Just Let Me Know!

April 12, 2010


Here are a few snippets of how today has gone…

Mom insisted on making pancakes this morning. She added eggs, half & half, and oil to the instant batter (just add water kind). Then she turned the skillet on high (which I went behind her and turned down). She mixed instant coffee, half & half and sugar in a cup of water then placed it in the microwave on 5 minutes when I went to the bathroom. I swear it looked like Mount Vesuvius had erupted in the darn thing. I cleaned up the mess and turned the heat down under the pancakes again. When she had 4 burnt-on-the-outside, barely-cooked-on-the-inside pancakes ready, she ate them and began to make more.
This time, when she had 4 ready she went to call Dad to breakfast. He told her he wasn’t ready to eat “just yet”, so while he was in the bathroom, she ate 2 more pancakes. I made a new batch of batter and started making him some more. Before I could get them on the plate, she came in and snagged the last 2. While she was eating, she had a dialogue going with the antique sewing machine. Her world is getting farther away.

Mid-afternoon, she exploded another cup of coffee in the microwave before deciding she wanted bread pudding. Dad insisted I let her do it herself. Unwilling to fight them, I cleaned out the microwave and stepped back until I was asked to “go away”. When I returned less than 15 minutes later, the bread pudding had exploded all over the inside of the microwave and Dad had a saucer with the sauce for the pudding on it. Mom had microwaved the sauce in its plastic cup for so long, it had melted the plastic and was now beyond description. She was insisting she was going to eat it. I informed her firmly, that she was NOT. When I pointed out to Dad that the plastic was almost entirely melted INTO the sauce, he agreed and threw it out. She was furious with both of us for wasting it!

While I was making dinner tonight (as he does every night), Dad asked what he could do to help. I pointed out there really wasn’t anything for him to do yet.
“Just let me know,” he cheerfully replied.
He sat down in his recliner and promptly got back up and came to the kitchen. “Can I do anything to help?”
“Not right now, Dad.”
“Just let me know,” and off he wandered.
The 3rd time he came in and asked, I suggested he go out on the front porch and enjoy the breeze. He replied, “I don’t feel like it. Is there anything I can do to help you?”
“Sorry, Dad. Dinner should be done soon.”
“Well, just let me know.”
The next time he enquired I suggested he go water the plants. His reply? “Nobody lets me help with anything.”
“But, Dad, I’m sure the plants need watering. It would help me a lot.”
He got the water pitcher out of the cabinet and proceeded to fill it with water. He then carried it to the bar and set it down. “Sweetheart, is there anything I can do to help you?”
“You could water the plants.”
“Sure,” he replied as he removed drinking glasses from the cabinet.
“How many for dinner tonight?” he asked.
“Four,” I replied.
He carried the glasses to the table and cheerfully set the table for 5. He then returned to the kitchen and asked, “Is there anything I can do to help?”
“No, Sir. It will be ready in just a few minutes.”
“Ok. Just let me know.”
With a smile, he retrieved the water pitcher and filled the glasses on the table. When he was done, he left the room in search of Mom (to let her know dinner was almost ready). I discreetly removed one place setting and put out their evening meds.
On his return, Dad again asked what he could do to help. I told him it was time to eat. He informed me (as he does every night) that when dinner was over he wanted me to disappear so he could clean the kitchen. And as I do every night, I assured him I would.

*** Just a side note… My 3 year old grand daughter, Ayla, has recently developed a penchant for saying not yet. To her, “not yet” means “not now, or later, or in a little while”
“Nonni, me help you?”
“In a little bit, Sweetie.”
“Not yet?” she asks.
I smile, “Not yet.”
To which she will cheerfully reply, “Just let me know!” I can’t imagine where she gets it from…

Double Trouble & "Cycling" Minds

April 11, 2010

In the mornings, I sit in my rocking chair on the downstairs porch. It is beneath the dining room and kitchen. Gradually, sounds begin to filter through the floor above me. The creaking, sort of grating sound of the wheelchair making its way across the floor alerts me that Mom is up. Today, it was only a matter of moments before I heard the steady beeping of the oxygen machine alarm (Dad never remembers to turn the machine off before he unplugs it)as he drags it laboriously along behind her.

I have heard the sounds that herald round 2 of my morning routine.

I go upstairs to greet them and see how they slept (though I already knew the answer to that one). Dad woke me up at 2:30 because she was having a rather severe asthma attack. She had been off oxygen since about 8:00 and it took a while to get her back on track. I stayed with her until we could get it under control and she was asleep.

As I steer them through their morning medical routine, I quickly realize that this is going to be a rough day.

Mom is confused, disoriented and struggling to keep her eyes open. Her mania is the only thing keeping her moving. Dad is deep in the throes of Alzheimer's. His attention span is about 10 seconds long before he forgets what he's doing. He is unable to complete simple tasks today without guidance and instruction.

I long suspected that they were somehow "cycling" their mental illnesses together. On our last visit to their doctor, I asked him about it. He believes that it's entirely possible. Mental illness can easily feed off another mental illness. It's kind of like an alcoholic or drug addict feeding off another alcoholic or drug addict.

In an odd way, it is co-dependency, but it is much more than that... It can be a coping mechanism (he can't handle her dementia or mania so he retreats into his Alzheimer's) (she can't handle the Alzheimer's, so she retreats into her dementia).

Fewer are the days that they are both clear minded at the same time. In Dad's case, a day no longer goes by that the Alzheimer's isn't present. In many ways we have been very blessed. Dad's journey into dementia began almost 10 years ago. It has been a very slow progression (though it has been an insidious presence that couldn't be hidden or controlled for a quite some time now). On the bright side, I watch him try to fight it every day.

Mom's journey has only recently begun. Until this past year or so, she has been surprisingly clear headed and sharp. But the progression of her decline over the last 6 months has been rapid and is clearly visible to everyone. Unlike Dad, she embraces her illness. She slides into her own private world that shuts out her surroundings. There, she is content to putter and play in a place where reality plays no role. Dad's Alzheimer's doesn't exist there, people don't move in to your house and do everything for you there, no one tells you to eat your dinner or take your pills there. You don't have to do... or be anything at all there. It is a place where she feels "safe".

It is getting harder and harder to pull her back to reality lately. And these episodes are becoming more and more frequent. It breaks my heart to wonder what it must feel like to her. I am watching someone who used to be one of my very best friends, slip away. Physically, emotionally and mentally, I am losing her and it hurts like hell.

These are the times I cry in frustration. There is nothing I can do to stop it. It's my job to continue to try to make their journey as easy for them as I can. And so, we will simply go on...

Misbehaving to Get Attention

April 9, 2010

On my return trip from visiting my family, I came around the curve before the house. I saw Dad walking down the road toward me. This is really unusual. Like I have said before, he rarely walks farther than taking the trash out anymore. I pulled over next to him and he leaned in the window of the car. He reached his hand out to me. I grasped his hand through the open window. He told me he had really missed me. I asked if he had behaved while I was gone. He hung his head, with a twinkle in his eye, and told me, “not exactly”. He informed me he was taking a walk so I drove on home.
When I arrived at the house, Richard immediately warned me that Dad was having a “bad Alzheimer’s day”. I went up to say hello to Mom (Richard had her out on the back deck enjoying the beautiful afternoon). She greeted me with, “RED FLAG! RED FLAG!” before she released me from our greeting hug. I knew from repeated experience that she was telling me that Dad was having a “BAD DAY”.

Richard and I sat down outside with Mom and began weeding the flowerbeds for Mom. I had been home for over ½ an hour when I asked Richard to go find his Dad. He still hadn’t returned from his walk and I was getting worried. (Giggle) It turned out that he had returned at some point and was inside the house.

We all ended up inside getting ready for dinner soon after we discovered he was home. I had to do the weekly meds so I sat down at the dining room table and got busy. They had to have their evening meds with dinner. While Dad was setting the table I again asked if he had behaved while I was gone. Everyone had already told me he had been really hard to manage at times. He instantly looked contrite and admitted that he might have misbehaved a little bit. When I asked him why, he responded, “Nobody pays attention to me the way you do unless I misbehave. So, I do it to keep them on there toes.”
He came over to give me a big hug and said he would try to do better if it would help me out. Once again, I was reminded that a demented mind is often very childlike. And just as I would with a child, I said with a smile, “You better or the next time you’ll get sent to your room.” He smiled and assured me he would try to do better as he shuffled off to get the silverware he had forgotten on his 4th trip to the dining room.

I Went Home and Came Home

April 8, 2010

I returned this evening from visiting my Grandmama, Mama and my sister for 2 days. I was startled, as I always am, to realize that my grandmother is 91 years old and in far better mental and physical condition than either of my in-laws. She is very tiny and frail. Her skin is unbelievably soft and her wrinkles add charm to her face. She is surprisingly agile for her age (though she does use a cane or walker much of the time). She is a woman to be admired!

What surprises me most is the realization that she has signs of early Dementia. I am totally aware that she is VERY lucky to have only recently begun to show Dementia related behaviors. But, for me, it is very difficult to see happening.

She told me a story, in which she repeatedly made reference to my mother having been gone with her sister. Problem is, Mama doesn’t have a sister. When I relayed the story to my own sister, I discovered that on the day in question, Mama was with my sister. I told Mama, I think it’s a classic case of substituting words when the proper thoughts can’t be assembled.

Cognitive function is the term used to describe a person's state of consciousness (alertness and orientation), memory, and attention span. I told Mama I think it’s time to have Grandmama tested for a Dementia related illness. In just 2 days time I saw obvious evidence of deterioration of all of the above.
There are medications that can help slow the progression and deterioration of the mind. There are herbal supplements that can help, as well as vitamins, minerals and compounds. I told her of the possible meds a doctor might prescribe. I warned her that they could be referred to a neurologist and/or a psychiatrist. Many medications for Dementia related illnesses are only prescribed by a psychiatrist.

I know what it looks like because I am surrounded by it at home. To me it was quite painfully glaring. If there is a way to slow it down, I will do everything in my power to see to it that it’s done.

I also discovered, that I need to be with her more. My heart breaks that I can’t spend more time with her than I do. I have committed to being here, taking care of my in-laws and I know how desperately they need me. My grandmother knows it too. She applauds what I am doing with sadness in her eyes. And I know for a fact that she prays for me constantly.
I’ve heard it said, that you can’t go home… I disagree. I went home (if only for a very short time) and I found a place that I remember from my youth. I found a sense of recharging my batteries just by being surrounded by my all female family (Karen & Janice included, sorry, Johnny). And I found the most special woman I know floundering to assemble her thoughts and struggling to make a simple sandwich.

She helped raise me and I wouldn’t be who I am without her constant support, encouragement, and unwavering love. I have tried before, and am still trying, to convince her to move in with us here. I could take care of her so easily here. She and Mom are very good friends and have been since I got married over 28 years ago. They would have such a good time together. And Grandmama would feel needed and useful “helping take care of” Mom. I wouldn’t have to worry about her (and I do… so much).
I know in my heart, she will never do it. Like my in-laws, she wants to stay in her home. I truly understand that. She lived there with my grandfather. Grandaddy died there. She is comfortable there, surrounded by her things, in her space. I just wish I could help more. But, I will do what I can. And I will visit more often. I want to spend every moment I can with her. I so totally get that it will one day be too late and I want no regrets more than I will already have…

Making The Right Call

April 4, 2010

Dad is aware that something isn’t right but he can’t pinpoint it. One major change we are making is backing down his sleeping meds and his anti-anxiety meds. He sleeps the majority of the time and I can’t help feeling that it is because of these 2 drugs he is taking. I have to urge anyone who is thinking of making a similar change to discuss it with your physician. NEVER make a med change without medical guidance it can be extremely dangerous!

On the subject of medication, do yourself a favor and get to know the meds. I research every new medication. I want to know side effects, drug interactions, how long it takes to get into the system and how long it takes to get out. With each new prescription I ask the doctor what it is being used to treat specifically. This can be essential because many drugs are used to treat different things.
Watch for possible side effects, remember, a demented mind can’t necessarily distinguish how they are feeling. They have to count on you to make judgment calls for them every day. Some days, you may only get one chance to make the right call. It is a heavy responsibility. You have to be their eyes… and ears… and memory…

Fight FOR Them Not WITH Them

April 3, 2010

In the natural course of aging, it is common to lose your appetite. But, it is not natural for you to get so hung up on losing weight that you refuse to eat. This is a problem that we have been fighting with Mom for a while now. She was diagnosed as having an eating disorder. Back in Sept. she weighed in at a healthy 159. By the first of the year, she was down in the lower 120’s and was thrilled about it. By Feb., she had dropped to 112 (that’s the lowest she got to). I sought help from the doctors. No matter how many times and ways we tried to explain to her that losing weight was putting a bigger strain on her heart, she still refused to eat much. Most of the time she claimed her dentures were bothering her.

They tried a couple of different medications (that did NOT work at all). Every morning we weigh in, and every morning, she got more and more excited as the numbers went down. Every day, she began to eat less and less.
In desperation, her general practitioner finally prescribed liquid Estrogen. Now think about this for a second. It makes sense. The #1 side effect in women on birth control pills is weight gain. So, when all else fails, drastic measures must be taken.

Within 48 hours of beginning the new med, she started developing an appetite. She insisted food suddenly tasted good. Ironically, we haven’t heard the dentures mentioned since we started the Estrogen.
Now, bear in mind, a month ago I was lucky if she ate a total of 2 cups of solid food a day. Now, I can’t get her to stop eating. Here is an example… this morning she ate a bowl of cereal and a piece of toast but was still hungry. I made her 4 pancakes that she promptly inhaled. She wanted more, but I told her she couldn’t have them unless she finished her pills (this is still a constant struggle with her). As soon as I said it, she devoured the pills and ate 3 more pancakes. Her weight is up to a solid 130 and she has more energy than she has had in months.

I have discovered that the will to live gets stronger when you are eating a healthy diet. I have also discovered the art of compromise works well. I don’t fight with her because it drains my energy and makes her twice as stubborn. Instead, I fight for her (sometimes with her knowledge and sometimes without).

"Have I Ever Met Him?"

April 2, 2010

My best friend, Thom, came to visit this week. I told Mom and Dad he and his daughters would be coming the day before he arrived. The following are excerpts from conversations with Dad regarding Thom's visit.
Dad- “Who is he?”
Me- “Our friend Thom…the one that’s from Tampa.”
Dad- “Have I ever met him?”
Me- “Yes, Sir. Remember, he was here with us for Christmas?”
Dad- “I remember him. What’s his name?”
Me- “Thom”
Dad- “Where is he from?”
Me- “Tampa”
Dad- “I knew that. That’s near Bradenton. That’s where I was born.”
Me- “Yes, Sir. I know.”

The next day, Dad asked me over breakfast if there was anything going on today.
Me- “My friend Thom and his girls will be here today.”
Dad- “Oh, have I met him?”
Me- “Yes, Sir.”
Dad- “Where is he from?”
Me- “He lives in Tampa.”
Dad- “When did I meet him?”
Me- “Well, Dad, he’s been here a few times. He was here for Christmas.”
Dad- “I don’t remember him.”
Me- “You will when you see him again. I’m sure”
Dad- “What does he do for a living?”
Me- “He works for Wingstop.”
Dad- “I ate there once. I don't remember it."
Me- "They sell chicken wings."
Dad- "When I was growing up nobody wanted to eat chicken wings. That's what the poor folks ate."
Me- "Isn't it funny how that happens?"
Dad- "Didn’t Richard work there?”
Me- “Yes, Sir. That’s why Richard lived in Phoenix last year. He was working there.”
Dad- “Who is coming today?”
Me- “Thom and his girls.”
Dad- “Where is he from?”
Me (with a sigh)- “Tampa”
Dad- “I knew that. That’s near Bradenton.”
Me- “Yes. Sir”

So, Thom arrives and Dad is cordial, “Good to see you again.” And as soon as he is out of sight, Dad turns to me and asks, “Haven’t I met him before?”
Me- “Yes, Sir.”
Dad- “I thought so. Just checking.”
Me- “It’s alright, Dad.”
Dad- “I think there is something wrong with my memory.”
Me- “It’s possible.”
Dad (giving me a big hug)- “I forget things sometimes.”
Me- “I know. But it’s ok. That’s what I’m here for. I’ll be your memory for you.”
Dad (wink)- “Somebody needs to be.”
Me- “I know, Dad.”
Dad- “Where is your friend from?”
Me- “Tampa.”
Dad (with a huge grin)- “I knew that. I just wanted to see if you remembered.”