The Twilight Years Are Here

The Twilight Years Are Here

Tuesday, March 30, 2010

It's A Red Flag Day

March 30, 2010

Many of Dad’s lifelong habits and routines are starting to drift away. For more years than anyone can count, he was an avid fisherman. Rising more mornings than not, he would be out on the water with his hook in place before dawn even made its arrival. Over the last several years, he gave up fishing altogether.

25 years ago, Dad would put on his running shoes and run to the gate (1 mile each way). 20 years ago, he would jog to the gate. 10 years ago he would walk to the gate. In fact, up until a few years ago he was still walking about half that distance daily. Up until a couple of months ago, he would walk to the end of the driveway (it’s rather long) to get the newspaper every morning. Now he doesn’t bother trying to do that. It’s as if it is too much effort to even go that far. Some days, it’s too far for him to go from the bedroom to the dining room.

Part of this is physical and part of it is mental. With mental illness, it’s very easy to slip into a depression. Days go by without tending to normal grooming habits. It has now become common for Dad to go days without showering or shaving. On rare occasions he won’t even get dressed. But when he does, he puts his bathrobe on over his clothes if we are at home. It isn’t unusual for him to wear the same clothes 5 or 6 days in a row. After repeated battles, I no longer argue about it. I just wait for a morning he comes to the table in his pajamas and robe then I go grab them up and throw them in the washing machine while he is having breakfast. He refuses to buy new clothes even though many of his are old and stained. He says he won’t get enough wear out of them so why buy them. I’m not even going to try to argue with that…

Mom’s lifelong habit of arranging and rearranging is still alive and well. Unfortunately, it’s because she is Manic. She hates being in a wheelchair, she hates being tied to her oxygen (The Leash) and she hates being told to take her meds or to eat. She wants what she wants… when she wants it and can be rather a handful until she gets her way.

She is getting more and more forgetful every day. At least 3 or 4 times a week, she doesn’t know who I am. Tonight, she asked me how long I have worked for them. When I replied that I moved here back in November, she wanted to know if my husband and children missed me. I gently reminded her that they were with me here. “That’s right… that’s right… I knew that,” she mumbled in a confused state.
After careful consideration, I have come to the conclusion that her confusion is sometimes induced by stress. Today was a bad day for Dad, as Mom calls it “it’s a red flag day” (referring to the caution flags used on the beach to warn you about being in the water). He has been argumentative and has picked at least 3 fights with her that I know of. He is not feeling well and his mood today reflected it. Here’s hoping, for both their sakes, that tomorrow will be better. And if it’s not… we will deal with it.

Sunday, March 28, 2010

Every Day Tasks Are Getting Harder

March 28, 2010

Some days are harder than others, know that and remember that. It can be very difficult to interest a demented mind. Sometimes, while the interest may be there the will just isn't, or worse yet, simple tasks have become physically or mentally impossible. Don't get frustrated, just keep trying. Anything you can do that stimulates the mind is a good thing. Anything you can do to stimulate the demented mind is a great thing!

Mom wants so desperately to be able to do all the things she used to be able to. Little things like arts and crafts, which she adores, have now become too difficult for her. Her hands shake violently most of the time (possibly related to Essential Tremor), making it impossible to do a lot of things. She finds many things physically impossible and others are just too much effort.

Dad, on the other hand, has no will to do anything. He is far more content to sit staring at a muted TV for hours on end. His self-imposed jobs around the house are gradually becoming more difficult for him to complete. If he begins to unload the dishwasher, for example, he may get sidetracked mid-task and completely forget what he was doing. He will then begin to load dirty dishes into the half unloaded machine. Or wander off absently forgetting to close the dishwasher door.
Last night, after dinner, I began loading the dishwasher while he insisted he was going to do it (he's still bandaged so he isn't supposed to be doing it). He immediately came to the kitchen with the few remaining dishes and informed me, "I have been loading that thing for over an hour. I don't need any help. Now move!"
I stepped aside and watched him turn 2 half full glasses of Coke and ice upside down in the dishwasher before he realized he had forgotten to empty them first. Within seconds, he grabbed the liquid dish soap and was going to pour it in the dishwasher. "Hey, Dad," I said, handing him the right stuff. "Why don't we use this instead?"
With a sheepish grin, he did it correctly before leaving the door open and wandering off into the other room. I followed him to do our nightly routine of cleaning his wound and changing the bandages. When we were done, he announced he was going to clean the kitchen and started to rise. I pointed out it was all already done. He replied, "Guess it's time to go seek a horizontal position." I wished them a good night and reminded them to call me if they needed me for anything. And as I was leaving the room, I saw him walk over and sit down in his recliner. Just that quick, he forgot he was going to bed.

Dementia News | Newsodrome

Dementia News | Newsodrome

Friday, March 26, 2010

Repeat, Repeat, Repeat

March 26, 2010

Dad gets to worrying about something and he can't let go of it until we find a way to resolve it to his satisfaction. For the past week or so, he has been worried about a prescription cream he uses. The tube was getting low and he didn't want to run out. I called the pharmacy and ordered more. A couple of days ago, I picked up the cream and brought it home. I put his credit card (which is used for all their prescriptions), the receipt and the cream into his hand as soon as I walked in the door. I made sure he put the card in his wallet before going to the kitchen to put away groceries. Dad called and reported his credit card missing so many times last year that they finally told him if he lost it again, he would have to wait until a specific date to get another one.

So here's the way today has gone so far...
Everybody slept in this morning (Mom and Dad were up A LOT last night and I was up with them) so breakfast wasn't fixed until about 11:30. While Dad was waiting for the pancakes to get to the table, he urged Mom to eat repeatedly. She and I both pointed out that breakfast wasn't ready yet, so she couldn't very well eat. He finally excused himself to go to the bathroom, mumbling that we were ganging up on him.
After 15 or 20 minutes, I went to check on him and found him in his bed asleep. He heard me and immediately struggled to his feet and made his way across the room to the door. He staggered when he went to stop in front of me. I caught him and held him til he was steady. "I think maybe I should lie back down for a while," he said shakily. "I'm a little dizzy."
I helped him back to bed and offered to bring his breakfast in to him. He passed his gnarled hand (the uninjured one) over his face and told me he would really appreciate that.
I went to the dining room and pulled out the bed tray I keep handy for times such as these. I put everything on the tray and picked it up while explaining to Mom that Dad wasn't feeling good so he was going to have breakfast in bed today. She nodded approvingly, "Good. Good idea. He's not himself today."
And as I turned around, Dad announced we were being silly. "I'm fine. Really. Sorry to put you to so much trouble, Sweetheart, but I've changed my mind. As long as I can sit at the table to have my meals, I will know I'm alive. Today, doesn't seem like a good day to die..." He ate his breakfast without incident but I could easily see he wasn't feeling well.

After breakfast, he went to Richard and told him he needed more cream. Richard explained that I had gotten him some a couple of days ago. Dad handed him the almost empty tube and asked if he would please take care of it. Richard of course came to me. And I of course went straight back to Dad. "Dad, I picked that up for you a couple of days ago." I was very cheerful about it, "Remember? I came in and gave you your credit card, the receipt, and the cream."
He instantly replied, "NO, I don't remember anything like that." He took the empty tube from my hand and led me to his bathroom. He showed me where it goes and pointed out emphatically that it would be right there if I had given it to him and it wasn't so obviously I was mistaken. Rather than argue, I took the tube back and announced I would go call it in and pick it up this afternoon.
As I entered the living room on my way to the phone, a thought flashed through my mind. I stopped at his desk and opened the drawer where he keeps his receipts. Rifling through it I couldn't find it so I closed the drawer and went to turn away. When I did, I saw the end of the tube poking out from under a book on the desk.
"Found it!" I yelled, heading for the bedroom.
Dad met me halfway down the hall. "Oh shit, Sweetheart. I am so sorry. Where was it?" I told him and he shook his head. "I'm sorry. I guess I forgot again."

After lunch we went through our routine of him telling me to get done in the kitchen and just let him clean it up. Normally, I would do exactly that, but he can't get near water with his bandaged hand. He is lost without his regular chores. He grumbled for a while but I managed to convince him he just can't load the dish washer. Sulking, he went to sit in his recliner.

Getting ready for dinner tonight, Dad asked if it was time to set the table (we go through this routine daily). I said, "Sure." "How many people are here tonight?" he asked. "Four." I replied.
He wandered into the dining room and promptly came back to the kitchen.
"How many people are eating dinner tonight?"
He got forks from the drawer and back to the dining room he went. As soon as he reached the table, he cleared his throat loudly. "How many people tonight?"
With a hidden smile I answered "Four."
Once the forks were in place he returned to my side. "What else do we need?" he asked in a stage whisper. "Knives and napkins," I replied, watching him gather the knives and shuffle to put them in their place.
When he returned to the kitchen he asked, "What's next?"
I told him he could go ahead and put the glasses on the table which he set out to do but as he opened the cabinet to get them down, he turned to me and asked, "How many for dinner tonight?"
I smiled at him and said, "Four." He looked at me with sad eyes and said, "Damn, I knew that. I'm sorry, I guess I forgot again." And off he went.
This continued until I had dinner on the table and we were getting ready to sit down. I realized there were no napkins. I didn't say a word about it, I just went and got them and put them on the table. Then Mom asked Dad if she could borrow his knife (she didn't have one) and so on. It is all part of our nightly routine.
When dinner was over I quickly cleaned the kitchen while Dad insisted he could do it. And I insisted that he would be able to as soon as the bandages come off in a few weeks.
Then I sat down to bandage his hand. The entire time I was unwrapping, cleaning and re-wrapping, he was telling Mom to eat her dinner, take her pills, etc. It has been a day of repetition, a day of confusion. But on the bright side, tomorrow just might be a better day.

Wednesday, March 24, 2010

Some Days Are Not Good

March 24, 2010

Today has been utterly exhausting. I woke up to the freezer door standing wide open (obviously for quite some time), food on the counter, 4 or 5 dirty dishes and a quart of milk had been consumed. I got the kitchen righted and took Jordyn to the bus stop and headed home. I managed to get 1/2 a cup of coffee in me before I heard the wheelchair above my head.

Mom woke up with a vengeance today. Ravenously hungry and determined to make herself pancakes, she WALKED into the kitchen. She turned the burner under the cast iron skillet to high and went across the kitchen to mix up the batter (which she sloshed all over the counter). She turned around and reached overhead to pull down the cooking oil, then poured a more than generous amount into the already hot skillet. In a flash, the oil was smoking and popping. I hurried to remove it from the heat. Meanwhile, Mom fills her coffee cup with half a cup of water and bunch of half & half and puts it in the microwave. When the timer goes off, she puts it on the counter and dumps a spoonful of Community (absolutely nothing else will do) Instant Coffee into it... the volcano that erupted everywhere was intense. I may have to tell Jordyn about it because it would be a great science project. While I cleaned up the mess, Mom fried pancakes.

Once things were stable in the kitchen, I sat Mom at the dining room table with her mountain of pancakes ( she ended up polishing off 8 small pancakes!). I began my Wednesday morning routine of filling their weekly pill boxes. It was more time consuming than usual because I had to make new med lists for them both as we have had several recent medication changes. By the time I was finished, they were done with breakfast and ready for a nap. So, I helped them get settled and disappeared downstairs to get a few things done.

Lunch time rolled around and I headed up stairs to fix them something to eat. They were already in the kitchen and Dad was pulling everything he could get his hands on out of the refrigerator, Meanwhile, Mom was stirring a pot on the stove. They were making there on lunch. I checked on Mom first and saw she was making oatmeal. When I turned to Dad, he grabbed my arm and pulled me as far from Mom as he could.

In a resounding whisper, he told me they had "decided to get a bite to eat because Mom got dizzy in the bathroom and closed her eyes then fell". He had apparently helped her up and encouraged her to lie down and rest for a bit. Having worn himself out, he stretched out beside her. They just forgot to let me know until now. For the 1,000 time I reminded him how important it is for him to let me know when one of them has an accident or an incident so I can assess the situation. A delay of the time it takes to get help could mean the difference between life and death.

Once everyone had had lunch, I left them alone again, at Dad's request, for a while. It wasn't very long before I heard them make their way back to their bedroom. When I checked on them, they were both sound asleep. A couple of hours later Dad decided he wanted to pick some Daffodils for Mom so he put on his slippers and quietly shuffled out the backdoor. He made his way to the hill that leads down to the lake and stepped right over the barrier.

I heard him calling me from the top of the stairs a little after 4 o'clock so I ran up to see what he needed. There he was hair sticking up wildly, shirt and pants covered in dirt, debris and grass stains (front and back), a handkerchief wrapped firmly around his left hand as he stood there shaking his head sadly. I couldn't have been more shocked as he told me what he THINKS happened. According to him, as he reached for the flowers, he lost his footing, or got dizzy, or was pushed, or something... and the next thing he knew he was rolling down the hill.

We both knew what was coming next as I looked at the huge tear in the back of his hand. I ran to tell Jeremy to come watch his Grandmother and bundled Dad into the car. Once again, we were on our way to the emergency room. When we arrived I dropped him off at the entrance and went to park. By the time I walked in, he was almost done with registering. "Sweetheart," he said to me, "Who is our primary doctor again?" Smiling, I told him. When they called him back for triage everything was fine until they took his temperature. "Mr. Felker," the nurse asked, "Have you been sick recently?" Immediately, he said no. I jumped in and pointed out that he has had a slight cold for about a week. The nurse explained he had a fever of 101.8. Dad smiled and said he had been running a "little fever" for several days now.

When I asked him why he hadn't told me he said he didn't want to worry me(ARRRRRGH, how can I help them if they don't tell me when things are wrong!!!!!) Whisk, we were taken to an examining room and a nurse breezed in and looked at his hand. There was no way for them to stitch it because the skin had simply peeled back. As we age, our skin becomes thinner and on the back of the hand, there is no fat to anchor the stitches. Next came an intern who decided it would be best to x-ray it just to be on the safe side and after looking at the chart, he decided it would be a good idea to do a chest x-ray too. He explained that it was likely he had "a touch of" pneumonia.

While we waited for the x-ray tech to come get him, the nurse came back in and irrigated his hand with a saline solution. She then pulled out 2 Q-tips. Very gently, she used one to lift up the skin and slid it under the flap. She then put the other one on the outside and began slowly drawing them toward the other side of the cut. "An old nursing trick," she smiled and urged me closer to see what she was doing. She explained that an elderly person's skin can actually curl under itself with this type of injury and if you can get to it within 2 hours of it happening, you can usually use this method to draw the skin back into place. I was amazed to watch her do exactly that. One steri-strip later and a whole lot of padding and bandaging and we were ready for x-ray.

The x-rays came back fine on the chest and on the hand so the nurse brought him Tylenol for the fever. When she approached the bed with it, he wanted to know why he had to take it. When she explained he said, "That's silly, I don't have a fever." The nurse, deciding to indulge him, took his temperature again. He was right, NORMAL.
She smiled and asked him if he had eaten or had anything to drink just before coming in. He said no not before we got here but he had drunk a cup of coffee after we got here. The price of those x-rays make that one heck of an expensive cup of coffee.

Then as I was signing him out, I find out that when I left the room to call Mom and report that he was ok, he told everybody that would listen that I was "a girl he had hired off the streets to take care of his wife." You can imagine the confusion that caused as I had to repeatedly explain I am his daughter-in-law. As we left the hospital, I informed him I would gladly spank him if I ever heard him telling people things like that. He insisted he hadn't... he didn't think. The laughter that followed us from the nurses station finally put a smile on my face.

We got home about dinner time (which Richard thankfully cooked so I could run to the drug store). Lord, the money that gets spent on keeping Dad in bandaging supplies is awful. When I got back, I went to check on Mom. When I walked into the bedroom, she was sitting on her bed, holding her toe with tissue wrapped around it. "Shari, do you know where the band-aids are? Ayla always gets them for me but she isn't here and I'm not sure where she gets them from." I dropped to my knees and removed the Kleenex to find over half of her toenail missing! She had tried to trim the nail and had pulled it off by accident. So, off I went to get bandaging supplies while Dad yelled at her for trying to do something I could have done for her. I almost wished she would yell back at him for rolling down the hill but she didn't and the rest of the evening was fairly uneventful.

10 Dementia Elderly Recommendations

1. Consider buying Long-Term Care Insurance while everyone is healthy.

2. Consult an Elder Law Attorney to get all legalities done right: Durable Powers of Attorney for Health and Financial, as well as Living Wills, Trusts, etc.

3. Realize when your elder says and does things that strike you as strange or illogical or irrational ¾ they are! Don't wait and just chalk it up to old age or second-guess yourself. Call the Alzheimer's Association (800-272-3900) and ask for a referral to a neurologist specialized in dementia who will perform a battery of blood, neurological and memory tests to accurately diagnose what type of dementia it is.

4. Ask the doctor about the medications: Aricept, Exelon, Razadyne and Namenda, which can mask and slow down dementia symptoms, keeping a person in the early stage longer. Make sure vitamin B-12, folate, thyroid and depression are checked, which can cause dementia-like symptoms. Have the doctor evaluate all medications for interactions. Optimize nutrition and fluid consumption.

5. Ask the doctor to consider prescribing an anti-depressant for your elder if needed, which will help to smooth out bad moods. And if you need an anti-depressant for yourself-get one!

6. When dementia surfaces, live in your elder's reality of what is true for them at the moment. Don't argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.

7. When illogical demented episodes surface, realize that your loved one may be trying to work through unresolved issues of a lifetime. Validate their frustrated feelings, go with the flow, and don't contradict, which may help them bring some degree of closure to difficult past experiences.

8. Enroll your elder in Adult Day Health Care, if possible, where professionals are trained to manage dementia patients. By maintaining a daily routine and keeping loved ones engaged during the day everyone will sleep better at night.

9. Call your Area Agency on Aging and the Eldercare Locator (800-677-1116) for resources, and attend a support group regularly.

10. Shift your perspective to being grateful for the lessons you are learning, even though they are hard. Celebrate the life that is left and stop focusing on the dying. You are required to make sure your elderly loved ones are safe, that they have good doctors and the right medications, but you are not required to let caregiving destroy your life, nor would they want that for you.

By Jacqueline Marcell
Dementia (from Latin de- "apart, away" + mens "mind") is the progressive decline in cognitive function due to damage or disease in the body beyond what might be expected from normal aging.
Although dementia is far more common in the geriatric population, it may occur in any stage of adulthood. This age cutoff is defining, as similar sets of symptoms due to organic brain dysfunction are given different names in populations younger than adulthood (see, for instance, developmental disorders).

Dementia is a non-specific illness syndrome (set of signs and symptoms) in which affected areas of cognition may be memory, attention, language, and problem solving. Higher mental functions are affected first in the process. Especially in the later stages of the condition, affected persons may be disoriented in time (not knowing what day of the week, day of the month, or even what year it is), in place (not knowing where they are), and in person (not knowing who they are or others around them).

"Dementia" simply means the symptom of a deterioration of intellectual abilities resulting from an unspecified disease or disorder of the brain.

Alzheimer's Disease is one disease/disorder that causes dementia. Many other illnesses or "syndromes" can also cause dementia. Parkinson's Disease can cause dementia. A stroke can cause dementia. Even dehydration can cause dementia.

Many of the things that can cause dementia are treatable, even potentially curable.

If you have taken your elder to the doctor and received a diagnosis of "dementia" you haven't received a diagnosis at all. Unless you know what is causing the dementia you can't begin to treat it's root cause.

If your physician has diagnosed "dementia" it's time for a second opinion. You are probably dealing either with a physician who is not comfortable with the truth, or one who doesn't know how (or doesn't want to bother) to differentiate between all the possible causes of dementia. Either way, a skilled geriatrician or a neurologist who is comfortable with seniors would be a good place to start.

Alzheimer's disease (AD), also called Alzheimer disease, Senile Dementia of the Alzheimer Type (SDAT) or simply Alzheimer's, is the most common form of dementia.

This incurable, degenerative, and terminal disease was first described by German psychiatrist Alois Alzheimer in 1906 and was named after him. Generally it is diagnosed in people over 65 years of age, although the less-prevalent early-onset Alzheimer's can occur much earlier. An estimated 26.6 million people worldwide had Alzheimer's in 2006; this number may quadruple by 2050.

The above is provided courtesy of SQUIDOO

10 Signs of Alzheimer's Disease (Early Detection Matters)

Have you noticed any of these warning signs?

Note: This list is for information only and not a substitute for a consultation with a qualified professional.

____1. Memory changes that disrupt daily life. One of the most common signs of Alzheimer’s, especially in the early stages, is forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own. What's typical? Sometimes forgetting names or appointments, but remembering them later.

____2. Challenges in planning or solving problems. Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What's typical? Making occasional errors when balancing a checkbook.

____3. Difficulty completing familiar tasks at home, at work or at leisure. People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. What’s typical? Occasionally needing help to use the settings on a microwave or to record a television show.

____4. Confusion with time or place. People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What's typical? Getting confused about the day of the week but figuring it out later.

____5. Trouble understanding visual images and spatial relationships. For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not recognize their own reflection. What's typical? Vision changes related to cataracts.

____6. New problems with words in speaking or writing. People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock"). What's typical? Sometimes having trouble finding the right word.

____7. Misplacing things and losing the ability to retrace steps. A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time. What's typical? Misplacing things from time to time, such as a pair of glasses or the remote control.

____8. Decreased or poor judgment. People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. What's typical? Making a bad decision once in a while.

____9. Withdrawal from work or social activities. A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. What's typical? Sometimes feeling weary of work, family and social obligations.

____10. Changes in mood and personality. The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. What's typical? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

If you have questions about any of these warning signs, the Alzheimer’s Association recommends consulting a physician. Early diagnosis provides the best opportunities for treatment, support and future planning.
For more information, go to or call 877-IS IT ALZ (877.474.8259).
This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations or individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association.

Some Days Are Good

March 22, 2010

Today was a good day, even though it didn't start out that way. Mom got up very confused and disoriented and didn't recognize me until halfway through breakfast. Dad decided to stay in bed when she got up (in and of itself a bad sign). By the time breakfast was over, she was cognizant again and spent a couple of hours happily getting ready to leave for her doctors appointment. It was a rare day when everyone was out of pocket (it was Melissa and the kids moving day). With everyone helping with the move, I had no choice but to take Dad with us. The fun part comes in where we have about an hour long drive to get there and Dad is in the backseat.

We have the same conversations every time we travel this road. "I will never forget the day Dr. B told me I wasn't allowed to drive anymore. Now everything has much has changed." He heaves a big, deep sigh that wrenches at your insides before launching a new subject. "When we first moved here..." "Have I ever told you about..." "Where is Richard going to work?"

The last one is easy since we are going to go right past it. Silly me for saying, "Dad, that's where Richard is going to be working."
Dad immediately responds, "HOOTER'S? That's where they have those NAKED DANCING GIRLS!".
"Dad," I tell him laughing, "They are NOT NAKED!"
"Ok, fine!" Dad interjected, "Half naked dancing girls. I remember when they said they were going to open this place a lot of influential people were against it. I just didn't think we needed DANCING GIRLS here."
I pointed out that the majority of the girls on the sidewalk were wearing LESS clothes (in their bathing suits) than what the Hooter's girls wear. And I pointed out the girls DO NOT DANCE. When I looked in the rearview mirror, he was smiling.

Mom wrinkled her nose and stated, "I'm not at all sure I would want MY husband working around a bunch of "those" kinds of girls..." I look over at her just in time to catch her grinning wink. It is very difficult to drive when you have tears from laughing in your eyes.

A little while later, Dad is talking about the kids and how cute they are when he suddenly says, "Kids misbehave when they want attention and they get it. I misbehave when I want attention but you people just ignore me. But on the bright side, I can misbehave all I want to and I don't even remember it half the time." It turned out to be a very pleasant ride with a lot of laughter.

When we arrived at the doctor's office, Dad insisted he would take Mom in while I found a parking place. I asked him twice if he knew where he was going and he assured me he did. I got her out of the car and settled into her wheelchair. I then showed him how to manage the portable oxygen tank while pushing the chair. He brushed me aside, "I know what I'm doing. I've done this before".
Actually, he hasn't ever had to deal with the tank and frequently reminds us that he has no idea how to even work it. So against my better judgment, I left it to him too get them where they were headed while I parked.

As I turned the corner into the main hall, I saw Dad pushing her toward me from the direction of the OB/GYN clinic. As was my worst fear, he was lost and hadn't been able to find the right office. So, I pointed the way and excused myself to go to the ladies room. When I returned I was informed that Mom wanted me to go into the office with her and that Dad would stay in the waiting room. Sirens went off in my head!! Leaving Dad alone could easily turn out to be a bad idea. I tried to delicately suggest he go in with us but she was insistent.

As we were returning to the waiting room Mom said, "I hope Dad's ok. Maybe we shouldn't have left him alone." I wanted so badly to say, "Wow, do ya think?" but instead, I said, "He's either wandered off or he's asleep. We'll know in a minute." And sure enough as we turned the corner, there he was, sound asleep in a chair facing the doorway. Thank God.

Monday, March 22, 2010

It Only Takes One Bad Caregiver To Ruin You

March 22, 2010

I want to talk about the importance of finding reliable, trustworthy, qualified help. Dad was driving down the road one day in 2006. He pulled up to a red light and noticed a large magnet on the side of the SUV next to him. It advertised a solution to elderly home care. Mom had been quite ill at the time and he decided it might be a good idea to hire someone to help him with her. He wrote the telephone number down and finished his errands before heading home.
He picked up the phone and dialed the number. It was answered by a pleasant sounding voice so he told the girl he might be interested in hiring her. He gave her his address and asked her how soon she could get here. She cheerfully replied, "45 minutes". Thus T entered the picture. She arrived under the allotted 45 minutes and was upbeat and full of energy. To him, she was an angel come to rescue him in his time of need.
During their initial interview, she spun him an amazing tale of being a recent Katrina victim. In this tale she was a heroine to an elderly woman trapped in her home near the beach in Biloxi, Ms. She was pinned to a wall by a floating refrigerator for hours but managed to save her patient's life. She then went on to relate the sad details of how her young husband had died in a horrific car accident. By the time she was through, his heart was on his sleeve. He hired her on the spot without ever making an attempt to check references, or work history or anything at all. He took her completely on good faith.
Gradually, we all got to meet T and almost everyone, including Mom, felt there was something "not quite right" about her. Dad, however, would not listen to a single word uttered against her. We had already taken a turn into Dementia with him, we just didn't know it then.

Time went on and T came in and took care of them everyday. Eventually, she recruited a girl or 2 to help her out. She assured Dad that she was doing background checks and making sure the girls who worked for her were qualified. He never questioned it. Over time one after another was gotten rid of usually because they were stealing or unreliable. At some point in 2007 she brought in V. Mom adored her with her soft, gentle country ways. The fact that she didn't like T was a huge plus in Mom's eyes. Thus began the days of a house divided. Dad on T's side and Mom on V's.
Everyone who met V (with the possible exception of Dad) loved her and felt none of the reservations T instilled. Time went on and Mom and Dad both suffered from declining health. It soon became apparent to the whole family that Dad was having some serious issues with his memory.

Somewhere in early 2007, things began to rapidly deteriorate. Our lives took several twists that year with Mom and Dad. They were both in and out of hospitals and rehab centers the majority of that year. I began closing my store on Wednesdays and driving 3 hours each way every week to keep a better eye on things. Their health was steadily declining and the caregivers just were not equipped to deal with most of what was happening.
A lot of the unrest between T and the family came to head in October of that year when Mom was hospitalized after a very serious fall. She had a heart attack and the EMT's struggled to revive her. She broke her hip in the fall and the outlook was incredibly bleak. Richard received a call from his father about 2:30 a.m. asking us to please get here right away. He asked that I start calling the family to let them know what was happening. We, Richard, Jeremy and I, made the trip on a very foggy night in under 2 hours. God was most definitely our co-pilot that night.
When we arrived it was to find Dad highly agitated and basically annoying the doctors and nurses in the ICU. Mom's doctor pulled me aside and asked if I would please sit with her so Dad could go wait in the waiting room with Richard and Jeremy. He also explained that it was very touch-and-go at that point. If she made it til sunrise we might have a chance...

Dad was furious at being removed from her side but we switched places anyway. I will never forget how it felt to sit there holding her hand and praying that the sun would come up. I was praying she would still be with us when it did. I will also never forget how it felt to watch the sun break on the horizon and at that exact moment, Mom opened her eyes and looked at me. I felt God's presence surround me as I rushed to tell her everything was going to be ok now.
Over the course of the next few days, family members began to arrive from all over the country. T went so far at one point as to actually show up, uninvited, at a restaurant where we had all met for lunch to discuss the current situation. And over the meal she referred to them as Mom and Dad. I thought my sister-in-law was going to strangle her then, but to her credit, she politely explained that she thought that was entirely inappropriate and that now was not the time for any strain. She then pointed out that for future reference maybe T should wait to be invited since, she was after all NOT family. It was a very stressful time for the whole family and T was only making matters more strained.

In early 2008, I began to receive very disturbing calls from T regarding Dad's health and mental stability. Things like the bank calling her because he was there, in the lobby, in his pajamas and bathrobe. Or calling me because he had been in yet another fender bender. I encouraged her to talk to his doctor. Unfortunately, the doctor decided that 2 things had to happen immediately. 1. NO MORE DRIVING. 2. They were going to have to have 24 hour care.
Dad was emphatic that he knew what he was doing and that we should all stay out of it. So he made arrangements with T to have either she or V stay with them 24/7. And for a while it seemed to be working out alright. Until their medications started disappearing.

The week of Easter in 2009, one of my sisters-in-law and I met T for lunch to discuss some of her concerns. The biggest of which being there were pills missing from the house. She told us she thought it was V and suggested removing the controlled substances from the house. We agreed to try it that way. T then called in an ex-employee, Faith, and explained her suspicions to her. Faith agreed to come on board.
On May 15, 2009 a formal investigation by the state of Florida was launched (this was the 2nd time it had happened). They got in touch with T who admitted to having removed the pills from the household. She returned them but the count did not match what should have been there.
On May 17, 2009 I called T and told her her services were no longer required. On May 18th, more pills went missing. It was apparent that there was more going on than anyone had realized.
The state of Florida gave her an option to turn herself in for criminal neglect to the elderly (among a few other charges) in the last week of July. We are currently awaiting her trial (after numerous delays) which begins next month.

I do not think she was responsible for the missing pills but I have no doubt she is guilty of the neglect charges. I do not think she made the mistakes she did deliberately, but she made them nonetheless and to the detriment of my in-laws (and it turns out many others). Had she been checked out in the beginning, there is every chance this could have all been avoided. At the very least we would have known from the beginning that she lied about her dead husband. He was sitting in a Texas state prison until sometime last year when she divorced him. Or we might have known that a lot of what was said wasn't exactly the truth. Or we might have known that she spent all her free time on the Mississippi Gulf Coast gambling.

V walked out during her shift sometime in August and we struggled through numerous replacements until Dad finally called Richard in September and asked us for our help. Faith remained the only constant at that point and she has proven herself to be a real friend through all of this. After hundreds of thousands of dollars for private care, they were taken to the cleaners in more ways than you can begin to imagine.

Get involved! I simply cannot stress how important it is to CHECK OUT caregivers. Are they qualified? What is in their background checks? Do they have any formal training? What do their references have to say about them? It is up to us, the family members that know and love them, to protect them. And if you don't get answers that satisfy you keep looking. In our case, we decided to move in with them and care for them ourselves. I do not regret the decision for an instant, I only wish we hadn't had to go through all of this to get here.

Sunday, March 21, 2010

Dealing With Dementia Jan. - March

Jan. 8, 2010

Dad tries so hard to be helpful but it really has a tendency to backfire at times. Last night, he decided to rid the fireplace of ashes just before he went to bed. He scooped everything, including the burning coals into a 10 gallon plastic bucket. When I went upstairs to secure the house for the night, I found a small electric fan on (blowing into the fireplace itself). I bent down and was assaulted by the smell of burning plastic and wood. I picked up the bucket to place it on the hearth and was shocked to watch the entire bottom of it come off.
In a split second my brain processed what was happening. 3 pitchers of water later, I felt secure enough to run downstairs and beckon Richard to help me. A major crisis was averted. But I am now more aware of the dangers that a demented mind can create.
When I explained what had happened to Dad, I expected denial (which is usually the case). Instead his response was curiosity. "That was really stupid. Why would I leave it on the floor? I should have put it on the hearth." He is fully aware that it could have been much worse. He is also determined to clean up the mess.
I guess the only thing we can do at this point is buy him a metal ash bucket. Oh yeah, and keep praying for strength and guidance. There is no doubt in my mind that, had it not been for divine intervention, what was a minor crisis could have been a major tragedy.

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Feb. 27th, 2010

You know it's coming...the day a doctor will use the words you have been dreading to hear. But when you see it in black & white, it still takes your breath away and makes you numb inside. This past week, we finally reached that point. Dad has been officially diagnosed with Alzheimer's Disease. The funny thing is... he was diagnosed by his previous doctor, we just didn't know it.
So, what exactly does that mean? Well, for starters he has become very combative and the forgetfulness has gotten progressively worse. The slightest change in routine can send him into an absolute tailspin. And he is convinced he is losing his mind. He has been known to double up on meds because he didn't remember taking them (they are now hidden from them). And he constantly argues while stating he doesn't want to argue. Dad is a classic example as he has hearing loss, and no sense of smell or taste left. On the 10 point scale for determining Alzheimer's, he is 10 for 10. Next step, we go for a full Neurological work up.

What is Alzheimer's... It is a progressive and fatal brain disease. As many as 5.3 million Americans are living with Alzheimer’s disease. Alzheimer's destroys brain cells, causing memory loss and problems with thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer’s gets worse over time, and it is fatal. Today it is the seventh-leading cause of death in the United States. It is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 50 to 80 percent of dementia cases. Other types of dementia include vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. There is NO CURE yet!
Just like the rest of our bodies, our brains change as we age. Most of us notice some slowed thinking and occasional problems with remembering certain things. However, serious memory loss, confusion and other major changes in the way our minds work are not a normal part of aging. They may be a sign that brain cells are failing.
The brain has 100 billion nerve cells (neurons). Each nerve cell communicates with many others to form networks. Nerve cell networks have special jobs. Some are involved in thinking, learning and remembering. Others help us see, hear, taste and smell. Still others tell our muscles when to move. In Alzheimer’s disease, as in other types of dementia, increasing numbers of brain cells deteriorate and die.

As a caretaker, it can be very difficult dealing with a loved one (or patient) who is impossible to reason with. While they may be upset or antagonistic one moment, they may completely forget an altercation the next. You simply have to learn to cherish the rare moments of clarity when they occur. And deal with the rest with patience and love. Remember, they are unaware of their own behaviors so there is no accountability for their actions. Your frustration is minor compared to what they must be feeling. You have control...they DO NOT!
We have begun a new phase in life here. It is often painful, exasperating, frustrating, aggravating, and heartbreaking. But on the rare occasions when it is none of the above, it is loving, rewarding, and special. I am blessed to be here sharing the end of their lives with them. And these notes will ensure that, should I someday be on the same path that they are, I will never forget how it was for them. Each day brings a new opportunity to learn and grow for me as they continue on their journey of forgetfulness.

March 5, 2010

Tonight in the ER, Dad told me he needed to talk to me. There was something he'd been thinking about a lot lately. I was then asked to make a promise that I know I will never honor. Dad insisted I promise that if Mom should die first I would see to it he could join her as soon as possible because he is only staying alive to take care of her. He said, "She is my breath. She is my soul. And I CANNOT have a life without her." I believe him.
But I will not do anything to hasten another persons departure from this world!
I truly believe he would die without her. I have seen it happen a couple of times in my life. Where a mate dies and the remaining mate simply gives up and dies within a very short time. In each case, an undying devotion was present in the relationship. I think that's why it happens. The connection is, quite simply, too strong. I believe it is likely he will simply slip away quite soon after she does. And he will be eternally content and happy to live his afterlife loving her.
I watch him tell her of his love (sometimes 20 or 30 times in a day). I watch how he hovers over her. Trying to help but constantly in her way. How he asks her over and over again, "Do you need anything, Sweetheart?" She considers it the height of rudeness to talk through a bathroom door but Dad will start knocking in 5 min, banging at 7 min and yelling at 9 min, "Sweetheart, can I get you anything?" Her tears break my heart. He smothers her with attention and suffocates her with love.

Without a doubt, she loves him, too. But she gets so tired sometimes. She is of frail mind and body. Far frailer than he. Her soul longs for a little peace and quiet.
She too thinks she is losing her mind. At this point she is still in touch with reality enough to understand, when I remind her, "It's just that touch of Dementia" she has. Her heart breaks as she watches Dad's mind deteriorate. And she is the most frequent recipient of his extensive, demented tirades. Though, I can say I am easily #2 on that list.

Our days are hard. Our days are incredibly complex. There are days I wish I were anywhere but here. There are days when I can't stop the tears of frustration, anger, and heartache. There are days when I feel too tired to lift my head in the morning. But I always do. My duties are numerous and my responsibilities are heavy. But they are mine because I choose it.
A friend of mine recently made me admit that I knew before I got here that it would be really tough. I did. But I could not have, in my wildest dreams, imagined how tough it would really be. You really have to walk this walk to even begin to understand.
I get it now in a way I didn't before. I came here to help them get their last wishes. They want to die at home. They want a modicum of dignity. They want a little bit of privacy. They want a semblance of independence. They want to go back to younger, better days. They want to share their memories and they want to, in some way, influence the the lives of the children in our house. The children are something they look forward to every day.
I am committed to helping them die. I am here to take care of them. I am here to help keep them alive for as long as possible. I am here to do all I can humanly do for them. But most importantly, I am here to try to understand them. I am here to listen to them. I am here to LOVE them.

I will not honor this promise. I made it because I was dealing with a need to put a demented mind at rest. I was buying us all, most importantly Dad, a little peace of mind. I hope.

This morning we went to the Neurologist for some tests. At the end of the visit Dad made a joke about being sent there because somebody thought he was going crazy. I asked the doctor, very softly, if he could please assure him he is not going crazy and explain to him what was going on. The doctor turned to Dad and said, "Mr. Felker, You are not even a little bit crazy. You have Alzheimer's Disease. Do you know what that is?" Dad explained it fairly well. The doctor pointed out to me quietly that Dad had been told at some point and either was in denial or possibly forgot. Dad sat there processing the information and thanked the doctor politely for telling him.

As of 3:17 a.m. he has so far gotten it but it is a long time til morning and he is currently asleep. That's a lot of hours to forget. If he does, we will start over again. And I will always be in awe of his love for her! And I will always be here to love them both and help them through this, the end of their lives.

March 10, 2010

Ok, Mom's list of illnesses is rather long (especially when you're 87). She has CHF (Congestive Heart Failure) and a leaky valve, COPD (Chronic Obstructive Pulmonary Disease), severe Manic Depression (Bipolar Disorder), OCD (Obsessive Compulsive Disorder), Carotid Artery Stenosis (at 60%), Chronic Asthma (with frequent bouts of Severe Acute Asthma), Debilitating Arthritis in her back and Dementia. She is confined to a wheelchair 99% of the time for 2 different reasons, the exertion of walking puts a terrible strain on her heart and the Stenosis causes her to feel light-headed and dizzy when she stands. She is on 24 hour oxygen (which she hates with a passion and calls her leash). She is frustrated with the quality of her life but at least she is alive (which I frequently point out to her).
Mom is currently in a Manic episode and it isn't hard to figure out the catalysts this time. Since Feb. 16th we have had to make 3 different 911 calls (all of which resulted in someone going to the hospital, one resulted in hospitalization) and 2 trips to the ER by car (one of which resulted in hospitalization as well). Dad was also diagnosed officially with Alzheimer's Disease and this time the doctor told him so. And, as if that weren't enough, their caregiver of over 3 years is getting ready to stand trial for criminal neglect to the elderly (most specifically my in-laws). It would be enough to drive anyone crazy. At times, I am almost glad she has an escape.
There is never a way of knowing how long an episode may last. Sometimes it is only a day or 2, others it can last a week or more. I have heard it likened to a shot of adrenaline that consumes one with boundless energy. She is unable to stay focused on any one task for more than a few moments at a time. She may have 8 or 10 projects going at the same time. When it is over, she will be exhausted for days. Together we will battle the overwhelming depression that sinks in once the euphoria has faded.
It is a vicious cycle that has claimed many great minds of our time Sir Winston Churchill, Abraham Lincoln, Theodore Roosevelt, Lord Byron, Victor Hugo, T.S. Eliot, Rudyard Kipling, Ernest Hemingway, Leo Tolstoy, Mark Twain, Virginia Wolff, Charles Dickens, Charlotte Bronte, Tennessee Williams, Hans Christian Anderson, Robert Louis Stevenson, Christopher Columbus, Bach, Beethoven, Tschaikovsky, Chopin, Mozart, Schumann, Handel, Rachmaninoff, Cole Porter, Irving Berlin, Noel Coward, F. Scott Fitzgerald, Albert Einstein, Sir Isaac Newton, Charles Darwin, Florence Nightingale, Vivien Leigh Butler, St. Francis Of Assissi, Martin Luther, Thomas Edison, and Robert E. Lee just to name a few.
Genetic factors contribute substantially to the likelihood of developing bipolar disorder. There is a history here of Manic Depression (even though the term is rather new). Mom's mother may have had it, as well as two or more of her siblings (they had the symptoms just not the diagnoses). All 3 of her daughters (one is no longer with us) have it. One of my own daughters has it, as do a couple of the other grandchildren.
The diagnosis of bipolar disorder can be complicated by coexisting psychiatric conditions such as obsessive-compulsive disorder. In the elderly, recognition and treatment of bipolar disorder may be complicated by the presence of dementia or the side effects of medications being taken for other conditions.As yet there is very little evidence-based research to guide management of bipolar in the elderly as opposed to adults in general. Mood stabilizers may significantly reduce psychotic episodes but they can not eliminate them. To date, there is no cure for this insidious mental illness. There are only treatments to help keep it in check.
As a caregiver who deals with mental illness on a daily basis I strongly advise anyone who thinks they may have Manic Depression or knows someone that may be suffering from it, to seek professional help. Mental illness is just that, an illness. There is help available (with proper diagnosis and treatment) that can improve the quality of your life and help you deal better with the illness that torments you.

March 11, 2010

I heard something so sweet today it made my heart ache and my eyes swim with tears...

I was getting the boys ready for school when Dad wandered into the kitchen. He came straight to me and gave me a big hug. "Shari, is it morning or night?" I assured him it was early morning and I was getting ready to take the boys to the bus stop. I suggested he go back to bed. With a squeeze of my arm, he turned and shuffled off in the direction of the bedroom.
As I headed for the stairs, I heard him talking to Mom. "Del, Shari says we can go back to bed. I think that's a good idea. Don't you? Let's go back to bed, Sweetheart, and cuddle for a while." For once, she didn't ask him to repeat himself.

Sometime after my return, I went upstairs to check on them. My fingers itched to take a photo as I peeked in their doorway. Sitting propped up in bed, side by side, their bodies inclined toward one another, they were sipping cups of hot coffee and obviously quite content.
I ducked back with tears in my eyes (for the second time today) and went to the kitchen. The poignancy of the moment was demolished as I turned the corner. I giggled as I took in the sight that greeted me. The freezer and microwave doors both stood wide open. The Half & Half stood next to the instant Community Coffee on the counter (hers) the top of the sugar bowl was MIA. The generic coffee was across the room with the Equal sitting next to it (his) also missing the top to its bowl. When I opened the refrigerator to put the cream away, the mystery of the missing tops was solved... Both tops were upside down in the egg holders. I picked 2 Mardi Gras cups out of the trash can and got them washed, dried and hidden. Dad repeatedly throws them away though I have explained over and over again that they are the kid's cups.
I still haven't found the measuring cup I left out to dry last night. I heard somewhere once that a little mystery in your life can be good for you. In our house they crop up daily. I can't count how frequently I hear that things around here "just move themselves". But I have a few theories on that...

March 17, 2010

Dad's doctor prescribed a cream that has to be put on his arms twice a day. When we sat down tonight to do his arms, I was quite pleased at how well it was going and felt him relax. Suddenly, he leaned forward and in a low voice, he said, "I've been having some problems with my penis, and I figured you are who I should tell about it."
I see his point, I am the one that schedules the appts and sees to it the get there. I administer their meds, I cook them their meals and I take care of them in every aspect of their lives. So, of course, he would tell me if he had a problem. He would expect me to have a solution for him. But these aren't exactly words you think you will ever hear from your father-in-law.
I continued to rub the cream into his arm as he watched my hand moving on his scaly skin. "That's it!", he exclaimed. "Can I put this on my penis? I think it just needs a little lubrication!"
To say I was speechless, is a gross understatement. I announced we were finished, told him I wasn't sure that was a good idea and assured him I would call the doctor tomorrow to see what he would suggest. Then I made a beeline for the door.
Can't wait to see what tomorrow will bring...

March 20, 2010

Ayla is 3 years old. She has connected in a way with her great-grandparents that is very unique. Though Mom (Muner) is legally deaf, she can hear Ayla quite well. More importantly, she can understand what she says. Ayla has taken it upon herself to "help" with Muner and Pop. In the mornings, she helps Mom get out of bed and into the wheelchair. She gathers a robe, lipstick, an inhaler (which she always shakes up before handing it to her), hairbrush and Mom's orthopedic socks. As soon as Mom has her socks on Ayla brings her a pair of slippers and slides them on her feet. Next thing you know, here comes Mom being pushed by Ayla straight to the scales.
There isn't much on earth more touching than watching a 3 year old try to hold the very shaky hand of an 87 year old while she steps on the scales. When Mom is back in her chair, Ayla hops on the scale so Mom can see what her weight is today. Ayla immediately pushes her to the table while I gather the blood pressure machine. Ayla pushes the buttons as soon as I have it in place and has her own notebook that she pretends to jot the numbers in. When we are done, she announces that Muner needs her memicine and breakfast. And then proceeds to hand Mom her oxygen tube and stands at the ready until it's in place. The instant it is, she turns the machine on.
If you ask Ayla what she wants to be when she grows up, she replies, "Me's gonna be Princess/Doctor." Because of her intense interest, Mom wanted to take her to a doctor's appointment.
So yesterday was the big day. We arrived at the office and Ayla insisted on opening all the doors. When we got settled in the waiting room, she sat quietly looking at several magazines until they called us back. When we got into the room, she became a whirlwind of activity. I have never seen a child so interested in EVERYTHING in a doctor's examining room. She was completely fascinated by the "other- one-kind" of blood pressure machine and asked the nurse several questions about things in the room.
It was an adventure for her and our doctor was delightful about it. Especially as he was trying to examine Mom and answer all Ayla's questions at the same time. I doubt I will do it again any time soon but it was a learning experience for us all.

Ayla knows when Dad is having bad Alzheimer's moments and will warn others that "Pop sick today". She will cuddle up to him more during these times and if he yells at her, she will simply walk away. She understands that he can't help it. On good days, he will tell anybody that listens that she is the cutest little girl he has ever seen. It really ticks Mom off when he points out that includes his own kids. Ayla is allowed to sit in his chair any time she wants to and has even been known to crawl into bed with them in the wee hours of the morning.

Mom is enchanted with Tyler and spends so much time watching him at the dinner table that she forgets to eat. She allows and encourages behaviors we are constantly having to correct. One of her favorite games at the table is to send wind-up toys across the table to Tyler while we are eating. Throwing food can cause her to burst out laughing. Running in the house is often considered a "cheerful" sound. Playing with things a child shouldn't can easily be a case of "Isn't that precious?" and can easily be a case of "Don't touch that" the next time.

Dealing with Dementia in the elderly while chasing 4 active children at the same time can be very trying. It can also be amazingly rewarding. It can be frustrating while it is fulfilling. It can be heart wrenching while it is heart warming.

And when all else fails, I call in the 3 year old cavalry. She can get the grownups to do most of the things they give me static about doing. All it takes is a little tilt of her head and an adorable smile... usually they become putty in her hands...

Nov. 22, 2009

Rule no. 1 never tell someone with dementia (or any aged person with memory issues) a secret! For a week now, Mom & Dad have known I was going to Tallahassee to bring Melissa & her kids back for Jordyn's birthday. Jordyn didn't think they were coming til Thanksgiving. After dinner tonight I excused myself to get ready for my little road trip.
Dad immediately asked where I was going. I remind him again to which he exclaimed, "Now wait a minute! What in the hell are you doing going over there? I thought those people were coming over here?" Needless to say Jordyn figured it out in record time.
As I left the room I heard Dad ask, "Who's coming again? And who do they belong to?" I spend a portion of every day explaining who is related and how. I assure you, when I get back with the kids tomorrow, I will be explaining it again. But on the bright side I won't be letting him in on any more secrets (he chooses the most inopportune moments to remember things).
Meanwhile Mom wants me to get the Lincoln Logs (it was Monopoly, remember?) she bought for Jordyn, so she can wrap it. And out of nowhere she just asked me to remind him to feed the fish (the one we never got). It is just one of those nights. I think it's definitely time to go get them ready for bed. NOW!

Nov. 23, 2009

I have believed that Mom had been misdiagnosed. We were told early this Spring that Mom was in the early stages of dementia. I see it now, though never clearly, the dementia that she isn't really trying to fight. You cannot see dementia clearly because it changes from moment to moment. Watching it progress is the most simultaneously- heart-breaking, exhausting, frightening, overwhelming, poignant, mind-boggling, painful things I have ever witnessed. I believe the reason she is giving herself up to the illness has a lot to do with living in an almost silent world. She can communicate with her toys because the only hearing required is the sounds in her imagination. She can honestly spend 5 or 6 hours in a day rearranging her toys (or flowers, or table arrangements, etc.).
It usually starts over breakfast & morning meds. She hates taking them, which I can totally understand, so she hides them. I find them around the dining room frequently. And today when I went to bring Melissa And the kids here for Thanksgiving, they both just skipped their meds completely. And when I pointed it out they both insisted they had taken them. I explained they couldn't have and Dad made me show him 2 times. He was mad at me the rest of the night.
I physically had to put Mom to bed. I had to catch Dad twice to keep him from falling. They were both disoriented, confused. He was combative, she was exhausted. And today was one of those days when I was relieved when they were finally settled for the night.
Tomorrow will begin at 5:30 when I have to wake Mom up to go to the hospital for bloodwork at 7. It's 15 min away but it will take her that long to get ready. If Dad wakes up at any point he will be going with us. I will let you know how that works out. For now, I am going to bed. I have to be up E.A.R.L.Y.

Nov. 25, 2009

Thanks to our trip to the hospital and the confusion that followed yesterday morning, the entire day stayed out of balance. Meds weren't taken on time, breakfast was very late and Dad's blood pressure was extremely low (lowest point 84/35. We spent a couple of hours working to get it back up. Despite my every attempt to get them both to lie down for a while, they stayed up all day. By the time I started dinner they were exhausted, confused & Dad was combative. When I took his BP before dinner it was 116/65 and I commented on it being better. He argued that it was low and I pointed out that it was better than it had been all day. He denied that it had been below 100 at any point & told me not to lie. My eyes met Melissa's across the room (hers were filled with shock as she had watched our battle all afternoon). I gently shook my head and pointed out that I had taken his BP over a dozen times & I had no reason to lie.
At dinner, Mom refused to eat much and I pointed out that she needed to try to eat more. Just that morning the doctor we saw had expressed grave concerns at her continued weight loss. Dad overheard me urging her to eat & immediately started telling her how important it is for her to eat. (for once he wasn't mean about it, he was genuinely concerned). But the one sure fired way to get her back up is for her to feel like we are ganging up on her. She adamantly refused to eat another bite! In fact she announced that if he didn't stop badgering her about eating she was going to stop eating all together. I decided enough was enough and we all left them alone. Dad to clean the kitchen and Mom to sulk.
A while later I received a text from one of my nephews concerned because they had been calling but not getting an answer. I went upstairs to check the phones (not sure what happened-no missed calls). Dad asked what I was doing and when I tried to explain he literally exploded. "Why is he calling you? You need to keep your nose out of MY FAMILY'S business!" I tried again to explain but decided it wasn't worth the effort. I went to check on Mom.
Within seconds of leaving the room I heard Richard tell Dad he was not going to tolerate him talking to me like that. In a flash they were arguing. Richard yelled at Dad, "I will not tolerate you being rude, mean or disrespectful to my wife. She is killing herself to do everything for you and you are mean to her. She is the one trying to keep this FAMILY together!"
Dad vehemently denied everything. He then came to find me to "apologize". He pulled me in the bathroom and closed the door. "If you don't like it here you can leave. We don't need you. Richard can't talk to me like that. I didn't do anything wrong and he doesn't need to be mean." He started with anger that quickly turned into whining. I suggested we all calm down. His reply, "I have never been rude to you. Richard needs to stay out of it." I replied softly, "I know Dad but how would you feel if you thought someone was hurting Mom?". He opened the door without a word and shuffled out. But I think he actually got my point.

Nov. 29, 2009

Mom woke up before I did this morning. She suffers from Mania as well as Dementia. This morning she was suffering them both simultaneously. She was rearranging the entire dining room surface contents. It is totally indescribable! She got fixated on Christmas and was off in OCD Manic mode that lasted the entire day!
Dad felt bad all day but couldn't pinpoint why. He didn't even mess with Mom at all (not about meds, or food, or going to the bathroom, or even going onto the porch alone. I wish he would talk to me more. He was locked inside himself. He didn't speak much at all today. He turned down going out to lunch with a friend and frankly told him, over the phone that he "just felt like shit". Tonight I am exhausted. And they both should be. Dad knocked right out, but Mom...she waited up for Richard to bring home the Christmas tree. We set it up and I mentioned to Richard that I wished I had a bird's nest to go in the tree. She actually heard me! She asked me to repeat what I had said. When I told her, she immediately began hunting for the one that "used" to be here...somewhere. (I honestly haven't seen it in years). Richard had to stop her from going out on the front AND back porches (in the dark, no less). Tomorrow we will look for the one that was here (once upon a time). If we do not find it, I will find one because I started this mess. I have always thought a bird's nest in a Christmas tree was charming. Until now...maybe.
I am hoping I can talk Mom into tree decorations from the land around us. There is a bounty here provided by nature (thank you, God). I would like to utilize it! And for that old-time country charm I will be stringing popcorn garland (and maybe cranberries). If I can only get Mom to help me it would be so incredibly theraputic for us both!

Dec. 12, 2009

Dad has been in a Scrooge-like mood since he got up today. If anybody mentions Christmas he is grouchy and terse. As Mom puts it, "He bites your head off." He gets like that because it is all beyond his control. He is distressed by all the fuss. Unfortunately, he acted out in a way that shocked us all.
He asked Jordyn a question and did not hear his reply. Jordyn repeated it at shout volume. In the blink of an eye Dad pushed him (yelling that disrespect will not be tolerated). He pushed him so hard that he knocked him down. Jordyn quietly got up, apologized and asked me if he could ride his bike to the beach. Richard turned to his Dad and explained that touching our 11 year old was not going to be tolerated! Dad was confused and contrite. He insisted he would never do anything to hurt Jordyn. That he hadn't done anything and he didn't understand why Richard would say that. He called me to his side and asked me if he had really knocked Jordyn down. When I said yes, his eyes welled up with tears. He squeezed my hand and kept saying, "I don't remember. Why would I hurt Jordyn. He's my favorite. Sweetheart, why would I do something like that?"
I can't explain an illness he isn't even aware he has. An illness that I only barely understand. He is well into the moderate stage and the combativeness will only get worse. Jordyn understands this and is probably the most tolerant of the situation. He loves his great-grandfather and tries hard to please him. More than once I have heard him say, "Pop can't help it!" I'm not sure what may come but violence can't be tolerated. Somehow we have to find a way to avoid it.

Dec. 20, 2009

What do you do when OCD, Dementia & Mania collide? get the hell out of the way. Mom is really suffering right now and there isn't a thing I can do to help her. The stress of the holidays has kicked her into Hyper-Mania and it's like watching a runaway freight train.
My Grandmama & Mama came to visit and were shocked at how far the Dementia has progressed in Mom. She is rapidly withdrawing into her own little world where she constantly putters around rearranging and moving things. She redid the dining room table at least 4 times during and after lunch. My 90 year old Grandmother was in agony watching her and wanting to find a way to soothe her restless mind. Always the social butterfly (the life of every party), she barely tried to talk to anyone. Dad on the other hand played host quite well. Everyone commented at some point or another about how sad it is to watch the helplessness in his eyes as he watches her. It was a wonderful day otherwise.
Until they all left, that is. I was immediately told that lunch had been inadequate and not at all how she would have done it. That hurt my feelings terribly because I tried to do it all exactly the way Mom wanted. (my family would have been content with a bowl of tuna salad, a loaf of bread and a bag of chips). They were amazed, impressed, and delighted with all the effort I had gone to. I was informed my family was too lavish with the number of gifts they'd brought and that it was an "utter embarrassment". The beratement continued until I couldn't listen another moment. I quietly excused myself and went downstairs assuring them I would be up in a bit to make dinner.
After a good hour long cry I washed my face and went back upstairs. Mom came in as I was pulling the makings for dinner out and informed me I needn't make anything for them. "We didn't know if you were going to feed us so we ate a bowl of cereal. I'm going to bed now." I explained it wasn't even 6 yet (dinnertime by their choice). And she informed me she "just couldn't rely on me" and headed off to bed.
I know that her behavior is controlled by mental illness. And I know I shouldn't let the mean things she says get to me. But I am human and at times it always will. So much of her actions (and words) are born of her own frustration. Just as my tears are born of mine. I pray for strength and guidance. And I never doubt for a moment that here with them is where I am meant to be. Sometimes, I just wish it didn't have to be so hard.

Dec. 22, 2009

Since the incident on the 12th with Jordyn, Dad has been a lot clearer. Still a lot of repetitiveness but virtually no confusion or disorientation. No combativeness at all. He is so eager to be helpful. Yesterday we were in and out of the car for over 4 hours. He held my hand at times with many gentle squeezes of reassurance.
Mom woke up yesterday in her own world again. She was withdrawn, combative and confused all day. For almost 3 years I have tried to answer her questions, "Why is he acting like that? Why isn't there a way to help him? Why is he so mean?". And all I can do is explain that it isn't him, it's his illness.
But the shoe is on the other foot now. It is Dad aching to reach out to her, to be able to help her. He is completely aware that she is mentally ill (though unaware of his own). There are never any labels just a profound sadness in his eyes as he watches her slip farther away. He wears a palpable cloak of helplessness which he never takes off. And always, ALWAYS there is a shining light of the most overwhelming, all-consuming love a man can have for a woman that I have ever seen. He fights so hard to cherish her he practically strangles her with his concern. As a rule, he will move heaven and earth to cater to her every whim. He lives FOR her. The beauty of his love for her is astounding!
There in lies my fears. I don't believe he could live without her and I pray every day that he will never have to try. She is declining so rapidly into the depths of Dementia. She weighed almost 160 in Sept., she is down to 122 now. The weight loss is aging her even more rapidly. She is thrilled every day that she loses more and never thinks it's enough. I went through Anorexia with my daughter as a teenager. I never dreamed I would go through it with my 87 yr old mother-in-law. But here we are battling multiple mental illnesses and trying to survive. And every day we are learning a tiny bit more about dealing with Dementia...

Quote From A Demented Mind

"I've been rich and I've been poor. I sure like being rich better. I just can't get used to being broke. Why is that so hard for everyone to understand? Mind you we were never really, really rich but we were never, never this poor either. I just don't know where Dad went wrong. He wasn't supposed to let this happen to us." -Mom over breakfast this morning.
I wanted to explain once again that they have spent app. $400,000 on round the clock care in the last 3 years. Add another $200,000 or so on medical bills and prescriptions in the same time period. Plus day to day living expenses and it just isn't very hard to figure out. I think Dad did a hell of a job keeping them above water as long as he did. Few of us could have provided for ourselves so well for so long. But then, I have always been broke and I have usually been HAPPY! Money really can't buy happiness. Sometimes, it just makes you think it can...

Christmas Day Dec. 25, 2009

It has been an interesting Christmas this year. Mom has been a daily challenge- hypermanic, OCD in OVERDRIVE, reluctant to take meds, temper tantrums, hissy fits, forgetfulness to the max. She wrapped half a dozen gifts when I was not in the room and immediately asked me who they were for and what was in them. Gifts that I knew about I had a list of that I carried for 2 weeks. When she asked, I usually had the answers. But when I don't see what she does, I can't possibly have the answers for her.
All of the stockings disappeared on Christmas Eve because Mom moved them and can't remember why she moved them or where she moved them to. We still haven't found them. Several gifts that she had wrapped and ready disappeared as well. We still haven't found them either. She kept wandering off while we were opening gifts (Dad still has at least 4 unopened gifts sitting next to his chair right now). Mom wrote a letter to the family "from Santa", that is beyond precious.
It was a wonderful, peaceful Christmas. There were no harsh words spoken. There were no tense moments. And when dealing with the demented mind, you realize they are childlike in their playfulness, petulance, and pride. They are lost in a myriad of ways. It is my job to make living as easy as possible for them. And I look forward to moments like these when I know they have had a great day. I will sleep well tonight knowing the house is filled with love, and for now, peace.

Dec. 28, 2009

Mom refused to eat dinner tonight. Trying to feed Ty, I just didn't have the energy to push her very hard about it. About the point I gave up, Ayla walked up to her, holding a deck of cards, and said, "Muner, you eat all yous bites me play cards wit you." Bless her 3 yr old heart for attempting to bribe the stubborn old grandmother. It didn't work but she certainly gave it her best try.
When Mom pushed her plate aside, Ayla sadly shook her head and told her, "Me no play wit you. Shoulda ate yous bites." With a kiss and a hug for both elders, Ayla headed for the stairs.
All the way down the stairs she hung her head. At the bottom, I stopped her and asked what was wrong. Her sad eyes met mine, "Muner sick. Her needs eat bites." I pulled her to me and told her she was right. I promised Muner would eat her breakfast in the morning. And I assure you she will, especially if I can make her understand that even Ayla sees what is happening.

Dec. 29, 2009

I can't make Richard understand that it is impossible to reason with a demented mind. You can coax, coddle, and cajole, you can beg, barter, and bribe, you can plead, promise and pray- but you cannot, ever (with any hope of progress) reason or argue with a demented mind.
Paraphrasing a t-shirt Richard has, "Never try to teach a pig to sing. It frustrates you and it annoys the pig." I honestly have a whole clearer understanding of what that means. The same applies to dealing with Dementia. I choose not to engage in battles. I choose the path of least annoyance and least resistance.
Fathers and sons have a tendency to be in an odd sort of competition with each other. Sons want to make their own way in the world (in part to make their fathers proud, in part to "show" their fathers). Fathers always tell them what would be best for them, how they should live their lives, that they would do it all differently. There is no nurturing as a rule. I often hear Dad say things like, "When you were little you were my pal." "Remember how we used to go fishing together?" "I don't understand why you are angry." Neither one of them can reach through to the other. It breaks my heart to know the one thing they have left in common is an enormous sense of frustration at the cards they are being dealt in life.
They are very alike, this father and his son. I am certain Richard fears that he may end up like his dad someday. And I often wonder if that thought hasn't crossed his dad's mind as well. Frustration can lead to anger just as patience can lead to peace. The problem around here, is being the only person who has enough distance (not related by blood) to practice patience. Believe me when I say that there are times I want to scream with the pain and frustration of it all. But I don't unless I am in the car, by myself, and no one can ever be hurt by it in any way. And when I am done, I pray...for more patience.

New Year's Eve Dec. 31, 2009

2009 was a year of MANY changes for my family and me. I closed the doors of my video store for the last time on New Year's 2009 and became a "stay-at-home" grandmother. Richard moved to Arizona for 4 months...and moved back. Melissa and the kids moved out and got their own place. The caregiver that was in place at my in-laws for 3 years got arrested for neglect of the elderly (the trial is yet to come). We received a panicked phone call wanting us to move in and care for them so we packed our belongings, put them in storage and moved to Santa Rosa Beach. I exchanged keeping my grand babies full time for caring for my in-laws 24/7. I reconnected with a couple of old friends that have become so important to me all over again. And I have made a couple of new friends that have become equally important in my life. 2009 wasn't exactly a bad year or a particularly good one. But I will always remember it as a year of drastic changes. I don't have a clue what 2010 has in store for me, but I look forward to finding out.

Dealing With Dementia

Nov. 16, 2009

There is no real place to start. It is so hard to watch someone you love get forgetful, add in a big dose of confusion and disorientation, throw a heap of frustration into the mix and you have a small idea what Dementia is like. And by all means, let us not forget the chronic repetitive stories. I wish it were easier to show appropriate reactions on the 7th or 8th time I hear the same story. Bear in mind, the way this works...a story is told, and as soon as the punchline is delivered, a short pause for audience reaction, and we start over. Usually there is very little variation in the delivery of the story but I feel the need to react as if I have never heard it before. As time goes on you hit the next stage of dementia. Combativeness. It is like dealing with an angry 4 year old. They sometimes know they are misbehaving and don't care, they are willful and stubborn, they are determined to have their way at all costs. They are argumentative, demanding and down right mean at times. It's all about control.

Nov. 17, 2009

So much of the negative behavior is caused by their lack of control. Put yourself in those shoes for a moment. You can no longer drive, you take so many medications it boggles the mind, you are told what to eat, when to eat and how to eat. Someone has to hover over you because simply standing up can make you fall. You have occasional "accidents" that require the most intense breach of intimacy known to man because you require help to clean up. You are nagged to bathe (its the kid thing again). You want to be useful, productive but you just feel like you are in everybody's way. You are lost much of the time in a world deep inside yourself. You dwell heavily in the past. Those memories are sharp and clear, they are happy times when you controlled your life. You don't want to complain about anything but anger, resentment, pain, frustration and confusion build and build until you explode! Can you imagine it? I see all of this every day. My heart breaks watching it. I am on a journey with 2 people I dearly love.
We are learning to deal with this horrific illness together. There have been many tears shed already (and there will be MANY more). There are also MANY hugs and "I love yous" and "Thank yous" and shared smiles. For years I was intimidated by my in-laws. They were Oilfield society (Mardi Gras & debutante balls, etc). Definitely not my world. They rubbed elbows with the rich and well-connected. When I finally started to feel comfortable with them it was instantaneous (after 4 or 5 years of being married to their son, the baby of 5 kids). We have never looked back!
Mom is one of my best friend's and has been for almost 25 years. She is the gentler side of dementia. She putters around (legally deaf and in a wheelchair) lost most of the time in a world where she arranges & rearranges things. She is directly controlling her environment. At this moment she is arranging a circus on the dining room table. She is an artist so she clings to her creativity. Please note we will have multiple scenes there today alone.

Dad is in the argumentative stage. With him everything is a fight. He is snappy & surly one minute and contrite the next. He is bored out of his mind so I find chores for him to do that help me. It gives him a purpose (and the floors have never been cleaner). He loads and unloads the dishwasher, sets the table, sweeps, mops, etc. He wants desperately to be useful. It serves another purpose as well- it keeps him from hovering over "his bride", as he calls her. He spends most of his time worrying about her welfare. While this is amazingly sweet, it is also suffocating. He drives her crazy at times. He often says it's important to help her get stronger because he can't face the thought of her going 1st. She simply is his reason for living! The problem is so many of his behaviours tend to drain the life right out of her. I make it my job to run interference for her or find things to distract him. I am determined to improve the quality of life for them both. We are currently seeking a balance in our relationships.

Let's talk about meals. Routine is critical to Dad. He gets up every morning and weighs in, checks his blood pressure, writes it all down in the log then heads for the kitchen. 1. Microwave water for instant coffee. 2. Drop bread in the toaster (1 piece on so-so days, 2 on good days). 3. Fry 2 sausage patties. 4. Pour a bowl of cereal and slice half a banana on top. Add milk. 5. Pour a glass of orange juice or water. 6. Sit down and start throwing pills (11 of them) into his mouth and chewing them up. Meanwhile when Mom gets up we go through the same medical routine then linger over a cup of coffee while deciding what sounds good to her. Usually it's 1 egg, 1 strip of bacon and a muffin. Sometimes she will make herself a couple of pancakes. Breakfast is casual. If you are in the kitchen when I'm cooking you can place your request. If not, you're on your own. Lunch is served between 12 and 1. And if it isn't Dad fixes his own and pouts all afternoon because "it wasn't as good as I would have done it". Lol. Dinner is rather formal. It is served promptly at 6. It is a family affair so everyone must be in their place on time. It is a long drawn out dinner (usually full of the same stories you heard last night & the night before). And the rare occasions you hear something new make it worth listening to time and again. The boys are learning to eat much slower because they have to stay seated until everyone is finished. The table is formally set by Dad while I cook dinner. And over dinner they take their evening meds. This has to be timed correctly so they don't fall out before dessert (which is imperative to them). I bake a lot here. Dad loves big, soft cookies. Mom adores all things sweet (brownies & muffins especially). After dinner Dad cleans the kitchen and they either play cards or go to bed. Rarely is there a shift in the schedule. And as it is that time of day I better get to it (got to figure out what salad we are having). Everything else will be ready right on time. And so it goes.

Nov. 18, 2009

When dealing with the demented mind you have to remember that they have no control over their actions at times. You cannot take outbursts personally because they are not personal. And you have to embrace the good, clear moments as they occur (unfortunately over time they get fewer and farther between). Dad slept late today which gave Mom and I a wonderful time to visit uninterrupted. When he finally made an appearance he was obviously well rested, clear minded and in good spirits. My heart swelled as I watched her roll over to lay her cheek on his arm. With shaking hand she gently touched his cheek and whispered, "Good morning. I love you.". The tears in my eyes at this shining display of affection were matched in Dad's eyes. "I love you!" he replied loud enough for her to hear. He kissed the top of her head and made his way over to me. I then received a kiss on the top of my head and an "I love you, too, Sweetheart!" Overwhelmed at this display of affection, I filed the moment away to be pulled out the next time he and I clash. How hard it must be for him as the family patriarch (respected, admired and even feared) to take direction from his "sassy" daughter-in-law. We are 2 very stubborn people learning our boundaries without a guidebook. But as much as we cross swords, we each know that the other loves us. In anger I once pointed out that I am the one who gave up my home, one of my children, my grand kids, my cats, MY LIFE to move here. I told him he has to try to see it from my point of view. He has been trying to ever since. And I was wrong because this is MY LIFE...and theirs. I see things differently now. Being here, taking care of them & teaching them about unconditional love is a gift I am being given. I am learning some of the most valuable lessons there are to learn in LIFE! And though our road will be long and hard, we are in this together. We will laugh and we will cry, we will feel anger and contrition but in the end we are not alone. And that is what matters most.

The elderly are generally prideful in my experience. While having pride can be a wonderful thing at times, the loss of dignity that comes with old age is not. There is a fine line between pride and dignity. As we age, we lose the ability to care for ourselves (and sometimes we simply no longer have the will to try). With that comes a loss of dignity. I always try to allow for as much privacy as is possible (which enables them to maintain their dignity). I do not pity them. They have had full, busy, successful lives. But I do sympathize with the frustration they must feel. Always remember to handle elders with respect, allow them to have their pride and as much privacy as possible. And they will feel more dignified as a result.

Nov. 19, 2009

Before I moved I babysat 3 of my grandchildren full time so Melissa could work. I have custody of Jordyn, Michelle's 1st born and have since he was 1 (I can't believe he will be 11 next week. I was up every night til 2 or 3 am, got up in the mornings at 7 to put Jordyn (and usually Cameryn) on the bus. Went back to bed til 10 or 11 (whenever possible). Here I am exhausted by 8 pm and up at 630 every morning.
I have discovered the rejuvenating power of being alone with yourself & God. I drink coffee, read, reflect, daydream, pray, go for a doesn't matter what I am doing, it only matters that I do it alone. The pace here is snail's pace slow (big difference from chasing kids all day) and it's own way exhausting. I am up & down stairs 40 times a day and there is absolute minimal privacy inside this house!
Let me give you an example of lack of privacy (sorry to those of you who know this story already). There are 2 doors to my bathroom (mine, huh! I share it with Richard & Jeremy). One to our bedroom & one to the laundry room. So, the other day I am kicked back enjoying a nice hot bath when there is a knock on the laundry room door. And I hear Dad say, "Anybody in here?" I reply, "It's me, Dad". He then says, "What are you doing?". I ask you- REALLY, Does it matter? But I reply that I'm taking a bath. To my utter horror I hear the door open and Dad's voice 2 ft away telling me he needs to talk to me. I squeak out a "Can it wait til I'm done?" while I quake at the thought of the (Thank you, God) navy blue, impossible to see through shower curtain being pulled back. Relief doesn't begin to cover how I felt when he told me to hurry up and left the bathroom pulling the door closed behind him! Seldom have I moved as fast as I did to lock that door. (You can bet it is ALWAYS locked now.
Dementia moment- Dad truly didn't see anything wrong with this behavior because to him it was urgent that he speak to me right then! I spend a good portion of every day talking about boundaries & privacy. The funny thing about it is they are 2 of the most privacy intense people I have ever met. I have discovered the aged tend to see us as ignorant children. Children do not require privacy in their eyes. It is a major issue here. All I can hope for by emphasizing it over and over again is that they will gradually begin to understand. Everyone has a right to privacy. A right to their own space. A right to set boundaries. And that is exactly what I am trying to do. I must also confess to seeing humor in the "bathroom incident". It just took me a while to get there.

I have to begin by saying this has been one of THOSE days. Dad decided to do laundry (Heaven help us all). Because Jeremy's room does not have a closet he has been preparing to move his hanging clothes into the laundry room closet (there are 2). So Dad starts raising hell about the mess in the laundry room. He then proceeds to add powdered soap to the washer, I had already put in liquid because he insists that's the only kind he likes. Not once but 4 times (the last 2 scoops went directly into the liquid dispenser). And when I pointed it out he told me he knew exactly what the hell he was doing. Wow, could have fooled me.
As soon as the coast was clear, Jeremy made a beeline for the "mess" and it magically disappeared. I thought that would be the end of that but it took Dad 5 more trips to the laundry room to notice it and quit griping. Then he started his tangent about how "you people" eat too much. Seriously my boys eat about what average boys their age eat. I make balanced, mostly made from scratch meals. He complains about the money we spend on groceries and insists I should just save the table scraps for them. 20 times a day I am told "we don't eat very much". Believe me, I know this.
I also know that Mom's appetite is better than it's been in a couple of years and he eats every bite I put on his plate. So I will keep cooking good healthy food and he will keep complaining (until he can find something else to complain about). He is bored out of his mind most of the time so he fills his time griping and complaining (almost always preceded by, "Now I'm not complaining but I want to talk to you"). Some days are tougher than others. I must admit, I will be glad when dinner is over (and we have eaten too much to suit him). So that I can cheerfully leave the dishes too him. I think it will be the perfect time to go take a bath. :)

Nov. 20, 2009

For the elderly, the fast paced world we live in can be too much. They lose the will to try to keep up (among so many other things). Dad has better days when he has chores to fill his time. So instead of brushing aside his repeated offerings to help, I give him simple chores to help me around the house. He sets the table for dinner, does the dishes after every meal, runs the dishwasher at night (and unloads it every morning), he sweeps and vacuums (it usually takes a couple of days to accomplish this, as he loses the vacuum regularly). He thanks me profusely for taking such good care of them and "allowing" him to help. If I try to thank him and explain what a big help it is to me, he waves me away. Mom needs projects to stimulate her mind. So I come up with things like going through old pictures, report cards & a ton of memorabilia that we are giving as Christmas gifts this year. Or having her go through her jewelry boxes and picking a piece of jewelry to give to all the girls in the family. She thinks it is fun. I think it's a great way to make sure the that things get to the person she wants to have them. It is all about keeping busy. If you are being productive, your mind stays sharper. If you are needed, you have a purpose. If you have a reason to live, your quality of life will improve. And these are just some of the things we are teaching each other.

The Woodpile
Dad has been worrying over the wood in the woodpile for days. Last winter they were in the hospital and rehab center so much that they barely used any. He has insisted it was 2 or 3 years old and "no good". So when the "Wood Lady" called this morning, he asked her to bring new wood and pick up the "no good" wood.
A couple of hours later a truck pulls in with 3 generations of firewood deliverers, mother, daughter and grandson. With Jeremy's help the 2 women unstacked all the older firewood, then unloaded & stacked the new wood, then loaded the old wood up to take away. And where was I while all this physical labor was going on? I was entertaining 5 month old baby Aadan, of course. Such a chunky little cutie!
After a while Dad came out and asked the ladies if I could take the baby in to meet "his bride". Mom and I oohed & ahhed over the little guy, then she started to pull out toys for him (he wasn't the least bit interested in anything but the new faces around him. When Dad came in he announced loudly, "He's awful cute. Real cute. But, Shari, don't go getting the idea to adopt him. He has a perfectly good mama outside to take care of him!" "It's ok, Dad. We're just borrowing him." I replied. Mom rolled her eyes behind his back and played with the baby.
Dad then proceeded to tell Aadan that he could tell he would grow up smart and when he graduated from high school he should come back to see. That he will gladly help him with college. Then he turned to me and explained that a baby like this (back in plantation days) would have been favored and possibly taken in, educated & set free. That this little guy would have been lucky like that. He could tell. And on that note, I took the baby back outside. Where Dad followed me telling me in a loud stage whisper that the wood we were getting didn't look any better than what he was returning. At last he decided maybe Jeremy should be in charge of fires now. He intends to teach him how to do it right (hmm a new project?) He then graciously thanked the "Wood Ladies".

Nov. 21, 2009

Dad has made himself Mom's self-appointed protector. If she is out of sight for more than a few minutes, he freaks with worry. Imagine this... You go to the bathroom and close the door (been there, sigh). After 3 or 4 minutes Dad goes looking for her. He knocks on the bathroom door. "Del, Sweetheart, are you alright?". No reply. Harder knocking followed by, "Del. Are you alright?". Pounding now, there is terror mingled with anger. "DEL! ARE...YOU... ALL... RIGHT?"
A tiny little, shaky voice says with a deep sigh, "What? I'll be out in a minute."
We are back to knocking but now it's used to punctuate his yelling. "ARE (KNOCK) YOU (KNOCK) ALL (KNOCK) RIGHT (KNOCK)???".
The tiny little voice is gone as she rather yells back, "I...WILL...BE...OUT...IN.
..A... MINUTE."
Her frustration is palpable. But so is his. If she feels dizzy (a frequent occurrence) she will go lie down for a while. Dad will follow her to the bedroom and tell her to get up. "You can lay down all you want to when you are dead. But to live you have to get up and keep moving!" is frequently said. To which Mom sighs (she does it all too often) and struggles to get up.
I spend a lot of time trying to run interference for this quiet, gentle creature that is my mother-in-law. I occasionally point out to Dad that she is legally deaf. (And I once again have to remind myself that he is entangled in his illness). To which he argues that hearing doctors just say that to get you to buy hearing aids that cost $2000. It's the Great Hearing Aid Conspiracy. He insists she hears just fine, she just ignores him. But I was there when she was last tested. I felt absolute joy as I watched her hear clearly for the 1st time in years. And we all avoid talking about it in front of Dad. But I am going to try to find a way to get them for her. How much do you want to bet she will wear them more when he is NOT around? But for now I'm going to claim a small piece of freedom for her. I am taking her shopping for more circus animals for her miniature menagerie.

Shopping For Circus Animals

Without a doubt Mom's favorite store is Michael's. For days she has been hinting around at wanting more animals for her "circus". So I decided it was time for a girls only shopping trip. She, of course, wanted to go to Michael's so off we went. I had to get gas and stop by the bank, both of which she impatiently tolerated. The air in the car practically vibrated with excitement when I pointed out where Jeremy works, and where Richard will be working starting Mon. (No more 1 hour commute).
When we pulled up to the store finally, she started tugging on the door handle. "Hang on a sec, Mom. I'm going to grab us a wheelchair with a basket." I quickly wheeled one out and got her settled in it. She insisted she wanted to go look at the bead section (just inside the door) while I went to park the car.
By the time I got back she had progressed all of 6 feet and I thought to myself, "Piece of cake". After a good 20 minutes of looking at and exclaiming over the incredible selection of beads they carry, I gently reminded her (yelling so she could hear me) that we needed to find the animals we were looking for. Much to the amusement of almost everyone within shouting distance. We finally turned the corner onto the main aisle where it took us an eternity to progress app. 12 feet to the animal section. (Imagine taking a small child with a pocketful of birthday money to a candy store & saying have fun, such was her excitement).
We spent the next hour & a half looking at animals. When we finally had 30 or so she then began the process of deciding which ones she absolutely could not live without. As the rejected ones were returned to their correct places she apologized to them. "You are a fine horse but I can only buy a few today. I'm sure someone will be along soon to take you home." or "Mr. Octopus I would love to have you but you really have no place in my circus. If I make an aquarium someday I will come back for you." or "As much as I would love to take you home little fairy, I would have to make a place for you. Perhaps I can get you another time. Maybe I can save up some money." (please the fairies were $7-$9 each).
Once the lucky ones were selected we set off in search of a birthday gift for Jordyn. After many, many "no's" she decided what she wanted to get him was a fish. So $30 worth of animals safely in a bag we left.
I left her at the curb to retrieve the car (where she unlocked the brakes & had to be stopped from rolling into oncoming traffic by a kind-hearted stranger). I, of course, was watching this helplessly as I rushed through the crowded parking lot. I deposited her safely in the car & returned the wheelchair.
Off we went to WalMart in search of fish. When we got there I again pulled to the curb and rushed in for a wheelchair (motorized this time). As I got her on it I cautioned her to stay put while I parked, thankful that she didn't know how to work it. Before I could park and make it back, another helpful passerby showed her how to work the darn thing!
1st thought- Oh God, where is she. 2nd- please don't let her get lost. I stepped through the doors to see her hauling butt (I know they aren't that fast but it's how it felt) around a corner. I quickened my pace to catch up with her. She went straight to toys and grabbed a Monopoly game. "I found it!" I was a bit confused, "Found what, Mom?" "Jordyn's birthday present. Do you think he will like it?" she asked with shining eyes. With a smile I told her it was perfect. We hustled to check out and wheeled outside (to go through the car routine again).
My phone rang. "Shari? Are you girls alright? It seems like you've been gone a long time." "Everything's fine, Dad, we're leaving WalMart now on our way home." He breathed a sigh of relief and said, "Be careful. I love you girls." And as I was taking the wheelchair inside a lady stopped me and nodded toward my car. "She's so sweet. You are lucky. I had to put my mom in a home last year. I just couldn't do it after her 3rd stroke. I admire you." She squeezed my arm and said, "God bless you." Then she walked away. As I got in the car my eyes clouded with tears. I am indeed so very lucky.