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NORMAL PRESSURE HYDROCEPHALUS
Shouldn't we be ruling this out as a matter of course?
http://www.foxnews.com/health/2014/11/12/is-it-really-alzheimers-treatable-condition-mimics-symptoms-dementia/
Happy Summer!!!
9 years ago
Showing posts with label disorientation. Show all posts
Showing posts with label disorientation. Show all posts
Wednesday, November 12, 2014
Wednesday, November 5, 2014
Saturday, October 11, 2014
Monday, October 15, 2012
"Why Won't You Let Me Go?"
“Who are you?”
“What are you doing?”
“Why are you touching me?”
“Get away,” (slap, slap, slap)
“Stop!” (slap, slap, slap) “Stop!”
(struggle, slap, struggle) “Help! Call the police!”
“Get me a phone they are holding me hostage…”
(Sob) “I want my Mommy. Please.”
(shaky hand grips my wrist)
“Why won’t you let me see her?”
“Why are you doing this to me?”
(shaky hand wipes wet eyes)
“I just want to go home.” (body shudders once)
“Why won’t you let me go?”
Momentary Leap Into the World of Lucidity
“What time is it?”
(struggling attempt to rise)
“What can I do to help you today?”
(eyes focus on me, clear and comprehending)
“I miss my wife.”
“Do you think I will ever get to see her again?”
“How did everything get so fucked up?”
(shaky hand reaches for me)
“I know you didn’t sign up for this.” (sigh)
“I don’t understand why you have stayed.”
“I want you to know I’d be dead without you.”
(squeeze tightly) “Please don’t leave me, okay?”
(eyes search mine) “Can I ask you a question?”
“Why won’t you let me go?”
Sunday, October 14, 2012
3 Days of Decline
This insidious disease spread slowly through his brain. His rate of decline amazingly having its own pace. But things have taken a surprising (to me) turn. His physical and mental decline are accelerating faster and faster. They have reached a point far beyond my control. Far beyond anyone's control.
Day before yesterday he decided to give up. He no longer wishes to live. More than anything on earth, he wants to “go home”. He spent the morning waiting alternately for his “Mommy” or the school bus. His speech was starting to slur. When asked where he was, he repeatedly responded, “England”. He constantly fretted saying that he doesn’t understand why we are keeping him here against his will. He was still able to help with his transfers from bed to potty chair and back. But, I could easily see he was growing weaker.
Yesterday his speech not only slurred but his words rarely made sense. He slept almost constantly and it was a tremendous struggle to get him to wake up long enough to force food and drink into him. At one point, trying to get him onto the potty, we ended up falling on the floor together. On the bright side, when we went down I was able to completely break his fall…with my body. It took almost 20 minutes to get him off me and rolled into a position that allowed me to drag him backward to rest his back against the side of the bed so I could go get Richard (he was downstairs asleep) to come help me get him up and back into bed.
Today has been different. He has slept much of the day. Sometimes he is a little bit clear, other times he is a lot hazy. He is in diapers now and he he seems to have no control over his body. Richard has gotten his first clear picture of how serious things have become. He has been a big help today and for that I am grateful. I know how difficult it is for him (after all, this is his father) but I am glad he finally sees clearly what our lives, Dad’s and mine, are like now. I spoke to hospice about my growing concerns. I also requested that we check him for a urinary tract infection. If he has one, some of what is going on may be explained by that. I guess we will know more tomorrow. Richard cooked dinner tonight and we (even Jordyn) ate it in Dad’s room with him. He ate it all, sometimes lucid, sometimes not. His imaginary world is now his constant companion. I watch him slipping farther away, a little more each day. My heart hurts and I am just plain tired.
Friday, October 12, 2012
New Orleans Is Next to Heaven
I know I have been absent for a while. I can honestly say that I have been completely and utterly overwhelmed by life. When life is coming at you, all at once, from every angle, it gets hard to put thoughts in order sometimes. There is also the unbelievable exhaustion that is caused by the mind that seems to be playing catch-up with the body (in my case, the battered and bruised body). But, the longer between writing the more I need it, if for no other reason than to exercise my demons and short comings.
I was blessed to get to go with Mama (and my sister) to her first Radiation Oncology appointment. Hearing the hope and BELIEF in this doctor’s voice that we could buy Mama some time with radiation and chemotherapy led me to set up a non-profit organization that will help pay her medical bills. I named it “Hope for Ann” and so far, we have raised almost $4,000 in less than a month! A dear friend, Terri, organized an all-day benefit last weekend, that enabled us to raise over $3,000 alone! Unfortunately, it is only a drop in the bucket of her mounting medical bills.
Mama and I had a long talk and I plan to keep “Hope for Ann” going for a long time to come. We will single out one person at a time, with terminal cancer, and we will raise funds to help them pay their medical bills. Some of my amazing friends have offered to embark on this journey with me. I can never thank them enough for their love and support. I can never thank EVERYONE involved enough for all they have done and are continuing to do.
I also have to mention that I planned to shave my head bald as a show of solidarity for my mom. She vehemently opposed the idea so I chopped all my hair off to donate to Pink Hearts Fund http://pinkheartfunds.org a group that makes wigs for children with cancer. My youngest daughter did the same as well as a couple of our friends. I am also now the proud owner of a white ribbon (for lung cancer) with my mom’s initials tattooed over my heart and my oldest daughter is sporting a new tat of a white ribbon on her foot. Solidarity at its finest!
Dad has had more ups and downs than are even imaginable. For the most part, he was doing pretty well… until I went out of town. I was given a trip to Colorado for the wedding of one of my “adopted” kids. One of the biggest honors of my life was getting to stand in as the “mother-of-the-groom” and it was truly one of the greatest trips I have ever taken in my life. I will cling to that always. As is the nature of a caregiver, I have to force back the feelings that so much could have been avoided “if only I hadn’t left him”. I left on Sept. 21st and returned on the 24th. What a difference a few days can make!
The week before I left town, I took Dad to see his primary physician. He changed his medications and it was decided that we would switch to hospice as soon as our time with home health ran out. A couple of days before I left, Dad’s beloved physical therapist, Helen, had to tell him that it was her last visit. That was a very hard day for both of us. Helen and I have become friends and she was the first person I told that we were calling in hospice. Dad was aware enough of the loss that he acted out horribly the rest of the day. His world had tilted out of balance and he knew it. Now, add to that the awareness that I was going out of town (most importantly, I wasn’t going to Ms. which he is used to) and throw in the fact that I had my oldest daughter come from out-of-state to take care of him. I mentioned to a couple of people, the doctor included, that he always seems to get sick or injured if I go away and prayed that things would be okay here while I was gone.
God has his own agenda. Apparently, he was doing alright on Friday and Saturday but then on Sunday, he only wanted to sleep. That afternoon, he went to the bathroom and fell. My husband, Richard, had to get him up and back into bed. He didn’t eat and barely drank anything all day. That evening, my daughter called concerned by that and the fact that he hadn’t taken any medications that day. I told her to wake him up and make sure he drank a full glass of water and ate a banana while taking his evening meds. She did and he went back to sleep as soon as he was done.
On Monday, he again fell. This time Richard had to call the EMT’s to get him off the floor and back into bed. After monitoring him for over an hour, they decided to not take him to the emergency room. Other than a small abrasion on his lower back, he seemed unharmed. Richard picked me up at the airport and told me what all had been going on in my absence. I didn’t even make it to the car before I knew we would be going to the ER that night and told Richard so. The 45 minute ride home seemed to last hours and I had to control the mind blowing urge to scream, “Hurry!” every few seconds.
I threw my bags aside as I came through the door. When I got to his bedroom, he was trying to push himself back up onto the bed, repeatedly scratching his tailbone on the side board. I grabbed him and called for Richard. When we had him fairly secured on the edge of the bed, I called for an ambulance. After a couple of hours, a bottle of fluids for dehydration, and several tests, it was determined that he had a small crack in his tailbone, multiple abrasions and bruises, but there was no reason to admit him.
The doctor (who we have dealt with many times over the last 9 or 10 years for both Mom and Dad) came in and knelt on the floor beside my chair. He looked me in the eyes and told me that he believed the medication changes were responsible for the falls. Then he asked me something I will never forget, “Take all his diseases and conditions and add them up, now multiple them by losing the person you loved an entire lifetime, then divide it all by 90… would you really want to keep fighting?” I told him that the orders had been signed to start hospice as soon as home health ran out. He suggested I call them both the next morning.
Just like that, we were discharged under one and admitted to the other. It truly couldn’t have been an easier process. Where home health was a tremendous help while Dad was still getting around and fairly self-sufficient, he had progressed beyond their functions. Hospice swept in offering help, supplies, resources, etc. For the first time in 3 years, I know that help is a phone call away and will be until the very end. It is nice to feel less alone in all of this.
The downhill spiral he took while I was gone continued until he was bedridden and slipping farther into his own mind. His Sundowner’s has taken a predictably bad turn over the last couple of months. At app. 4:30 pm EVERYDAY, he becomes increasingly delusional, belligerent and hostile. He invariably stops recognizing his home and anyone in it and is convinced that we are holding him here against his will. He is uncooperative and can physically lash out. He asks frequently where Mom is and why I am keeping her from him, unable to remember that she died in 2010. Eventually he begins to whine that he wants to go home. When asked where home is he replies, “New Orleans”. It wasn’t until last night that he mentioned that Mom always said, “New Orleans was next to Heaven” so he needs to get there to be ready to go. I remember my Grandmama telling me she wanted to “go home”. I remember how peacefully she did. I thank hospice for that and I thank them for their support again.
Last weekend while we went to Ms. for the benefit, Dad was moved to a local nursing home for 5 days of Respite care. Medicare pays for this service for 5 days every 90 days through hospice. Remember that caregiver burnout I was headed for back in Aug.? It finally caught up with me. The break was a great thing for both of us. We couldn’t believe how good he looked when Richard and I arrived to pick him up. He even fed himself all of his lunch while they processed his release. Unfortunately, he thought he had been arrested and that he was in jail. But the gratitude and genuine affection he showered Richard with at “breaking him out of this sh*thole” was nice to see.
He seemed to be in great spirits as we got him home and settled. But as the afternoon shadows lengthened outside, I watched him fade slowly back inside his demented mind. He obviously didn’t recognize me as I searched for ways to stop his mental retreat and by bedtime, we were both exhausted beyond belief.
He is belligerent a lot of the time now and has become increasingly violent toward me. He insists he can do things like standing on his own but he starts to fall if you let go for even a moment. He tries to scoot out of the bed without calling for help and gets stuck halfway through the process. He can no longer do anything unassisted and that frustrates him to no end. The other night, he reached out a hand to me with a smile. When I took his in mine, he yanked me down to him and smacked me in the face with the other one. Instantly, his smile was replaced and a look of absolute hatred replaced it. I jerked away reciting a litany of, “It’s not him, it’s the disease” to myself. I have to recite it a lot, especially when my old bruises have new bruises on them.
Today started early, about 4:45 am. Dad started calling, “Hello? Hellllllooooo?” I struggled to break free from the sheet on my makeshift bed otherwise known as the living room sofa as his voice rose in volume. He had wet the bed and needed cleaning, changing, and to go to the bathroom again. His speech was blurred and he was very unsteady, completely unable to do anything at all. Once clean and dry, he instantly fell back asleep.
He slept until the nurse’s aide arrived to bathe him. He is concerned that he missed the school bus today despite reassurances that today is a teacher planning day and there was no school. He believes he is a little boy and is waiting for his mommy to get home from work. When the nurse arrived she asked him how old he was, he replied that he was 56. When she asked where he was, he said he was in his home. When she asked where his home was, he said in England.
The rate of deterioration seems to be hurtling us ahead at a lightning fast pace. He is slurring his words and he is beginning to forget how to eat. Drinking water from a sippy cup with a straw is beyond him most of the time. He frequently chokes on food or drink. We are past the point of hoping for good days. Now, we can only hope for good moments. The washer and dryer are in near constant use, loaded with sheets, blankets and pajamas. Note to other caregivers: I have finally given up on the bottoms unless he is up and in the wheelchair. He was going through them faster than I could wash and dry them. It has also lightened my load because we aren’t struggling in and out of them all day, every day.
After seeing him today and helping me get him onto the potty chair, our nurse has decided to order us a Hoyer lift. This is an assistive device that allows patients in hospitals and nursing homes and those receiving home health care to be transferred between a bed and a chair or other similar resting places, using hydraulic power and slings. My back is thrilled at the thought of some relief. Moving a 6 foot tall man who weighs app. 195 pounds would take its toll on anybody. Moving said man all by oneself is possible but unbelievably difficult.
Hospice has come to my rescue. They have provided me with all the medical equipment I need to provide the best care I can here at home. They take care of his prescriptions, his Depends, wipes, pads, razors, shaving cream, medical supplies, etc. If we run low on anything, all I have to do is call and they will deliver it to me. They send someone to bathe him 3 times a week. We have an assigned nurse who is gentle and caring when dealing with him (which is a couple of times a week).
{Sometime & a wrenched back later} They just delivered the Hoyer lift. Whoever designed that thing obviously never considered its use with someone who suffers from severe incontinence, Crohn’s Disease & Prostate problems. This can only get more interesting. I will do my best to keep you posted.
Sunday, April 3, 2011
Back With Things to Say
April 2, 2011
I am the first to admit it's been a while. I apologize to my readers and I apologize to myself. So much has happened since last August. I realized today that I haven't been able to write because I have been too bogged down in the day-to-day chaos of just living here. I am going to give a quick overview and tell you that Dad has been hospitalized 3 times since Aug. Once for Crohn's Disease, once for dehydration and once for his heart. Last Oct. his oldest living daughter (and one of my dearest friends EVER) died very unexpectedly and our lives again were shattered. Ironically, Dad's Alzheimer's provided him protection from the realities of it all.
Living with someone who suffers from Dementia/Alzheimer's is similar to living in a war ravaged third world country. Unpredictability and instability become the norm. At any given moment, (with no rhyme or reason) anyone can be seen as the enemy and suddenly clarity ceases to exist. It happens in the blink of an eye. Being the caregiver of someone who is completely irrational at times and requires 24/7 care is without a doubt the most frustrating, exasperating and exhausting role I have ever taken on. But the times when it is satisfying, fulfilling and rewarding makes it all worth it. Unfortunately, there is absolutely no way to find such a thing as balance when dealing with Dementia.
In essence, I am dealing with an 89 year old child most days. Frequently, he is aware that he is misbehaving but is unable to control the behavior. And if he misbehaves, his illness enables him to forget it the moment anything happens. I am firmly convinced that most of the negative behavior he exhibits is born of his overwhelming sense of frustration. The limitations that have been imposed on him by his many physical ailments, his age, and his mental instability are taking a friendly, out-going, active, humorous, hard working, life loving man and making him a shell of his former self. (Though, I have to admit, he still has an awesome sense of humor at times!) He is so seldom animated anymore that I have to be grudgingly grateful for even the bad behaviors.
Here, I'll give you an example. When we left our last doctor's appointment the other day, Dad insisted on collapsing his walker and putting it in the back seat of the car unaided. I stood by helplessly watching his struggle. After several minutes, I stepped forward to help. Out of nowhere, I received a forearm across my chest that sent me reeling backward. Dad turned to me shaking with rage and yelled, "I can f-ing do it myself!" His frustration mounted as he continued to fight with walker and I stood terrified he was going to give himself a heart attack with the strain. A couple of minutes later, he finally got it shoved in (in a position that put a wheel directly into the back of my head).
For so many reasons, I wanted to rest my head on the steering wheel and cry. My frustration at it all enabled me to see his frustration so much more clearly than I already do. Those are the moments when I can hear my heart crack a bit more in the surrounding silence. As I started the car, I glanced over at him. On his face I could clearly see his pride, his sense of accomplishment in having successfully accomplished a task he had set for himself. And I could feel the crack slowly beginning to heal.
I am the first to admit it's been a while. I apologize to my readers and I apologize to myself. So much has happened since last August. I realized today that I haven't been able to write because I have been too bogged down in the day-to-day chaos of just living here. I am going to give a quick overview and tell you that Dad has been hospitalized 3 times since Aug. Once for Crohn's Disease, once for dehydration and once for his heart. Last Oct. his oldest living daughter (and one of my dearest friends EVER) died very unexpectedly and our lives again were shattered. Ironically, Dad's Alzheimer's provided him protection from the realities of it all.
Living with someone who suffers from Dementia/Alzheimer's is similar to living in a war ravaged third world country. Unpredictability and instability become the norm. At any given moment, (with no rhyme or reason) anyone can be seen as the enemy and suddenly clarity ceases to exist. It happens in the blink of an eye. Being the caregiver of someone who is completely irrational at times and requires 24/7 care is without a doubt the most frustrating, exasperating and exhausting role I have ever taken on. But the times when it is satisfying, fulfilling and rewarding makes it all worth it. Unfortunately, there is absolutely no way to find such a thing as balance when dealing with Dementia.
In essence, I am dealing with an 89 year old child most days. Frequently, he is aware that he is misbehaving but is unable to control the behavior. And if he misbehaves, his illness enables him to forget it the moment anything happens. I am firmly convinced that most of the negative behavior he exhibits is born of his overwhelming sense of frustration. The limitations that have been imposed on him by his many physical ailments, his age, and his mental instability are taking a friendly, out-going, active, humorous, hard working, life loving man and making him a shell of his former self. (Though, I have to admit, he still has an awesome sense of humor at times!) He is so seldom animated anymore that I have to be grudgingly grateful for even the bad behaviors.
Here, I'll give you an example. When we left our last doctor's appointment the other day, Dad insisted on collapsing his walker and putting it in the back seat of the car unaided. I stood by helplessly watching his struggle. After several minutes, I stepped forward to help. Out of nowhere, I received a forearm across my chest that sent me reeling backward. Dad turned to me shaking with rage and yelled, "I can f-ing do it myself!" His frustration mounted as he continued to fight with walker and I stood terrified he was going to give himself a heart attack with the strain. A couple of minutes later, he finally got it shoved in (in a position that put a wheel directly into the back of my head).
For so many reasons, I wanted to rest my head on the steering wheel and cry. My frustration at it all enabled me to see his frustration so much more clearly than I already do. Those are the moments when I can hear my heart crack a bit more in the surrounding silence. As I started the car, I glanced over at him. On his face I could clearly see his pride, his sense of accomplishment in having successfully accomplished a task he had set for himself. And I could feel the crack slowly beginning to heal.
Friday, May 14, 2010
Here We Go Again... And Again
We went to the doctor yesterday for a follow up on Dad’s light-headedness, low blood pressure and heart rate, and dizzy spells. I also wanted his arm checked out because I have been unable to completely stop the bleeding. I was reassured to hear I had done a good job debriding it and to keep doing the same stuff we always do with these types of injuries.
In light of the pain in the back of Dad’s head, the doctor was once again referring us to the Neurologist. The dizzy spells could be a symptom instead of a side-effect.
We went over his medications again, cutting several more in half. The biggest change for Dad would be cutting back his Trazodone from a whole to a half. (Trazodone is an antidepressant medication. It is thought to increase the activity of one of the brain chemicals (serotonin) which may become unbalanced and cause depression.
Read more: http://www.drugs.com/trazodone.html#ixzz0nv80eUx2.) It can be very useful for the treatment of sleeplessness. As we learned last night, Dad is not ready for a change on this medication.
Dad took his meds at dinner as usual. He was feeling off-kilter throughout dinner. My sister-in-law, Susan, and I left to go pick up Dad’s prescription. When Dad finished his dinner, he told Richard he was tired and going to bed (even though it was barely 7:30 and still quite light outside).
We got back just before dark. I went to check on Dad. His night light was off (which is highly unusual) so I leaned down and turned it on, which woke him up. I assured him it was “just me” and approached the bed. He was lying on top of the made bed without a shirt on.
I held out my hand. “I need your patch,” I pointed out.
“I took it off,” he replied automatically. His hand slid over his bare chest until he discovered the patch still firmly in place. “No, I didn’t.” He removed it and handed it to me.
I showed him that I had his credit card and said I would put it in his wallet. He nodded.
“Dad, are you ok?”
“I was feeling flukie at dinner so I decided it was a good idea to go to bed.”
“Flukie how?” I asked as I came back to stand beside him.
“I don’t know,” he couldn’t explain it. “Just flukie.”
“Dad, does your head or neck hurt?”
“No, I just don’t feel quite right… you know… I just feel kind of flukie.”
We were obviously getting nowhere with this conversation. I bent down and kissed his cheek. “If you get up, use your walker,” I reminded him. Please, Dad, I’m trying to keep you safe. I need you to help me. I need you around here.” He patted my hand and told me goodnight then closed his eyes.
I went back downstairs to hang out on our porch with Richard and Susan. About 30 minutes later, Susan went up to the kitchen for ice. She stepped out the kitchen door, closed it behind her and headed down the outside stairs.
She only made it a few steps down when the door flew open and Dad leaned out. “Susan! Susan! Did you hear me calling you???”
Susan froze on the stairs without turning around. “Yes, Dad. I did,” she replied with a sigh.
“You need to get back in here. Go in that room and go to bed!”
In her soft little singsong voice, she said, “Well, Dad… I’m hanging out down here with Richard and Shari right now. We are talking and visiting.”
His anger was palpable as she resumed her descent once more. “You don’t need to be hanging out,” he spat. “Our neighbors aren’t use to people behaving like this. Carrying on and making noise til all hours. These are decent hard working people in this neighborhood. They don’t like to be disturbed.”
Please note, it wasn’t even 9:30 yet and we had just been sitting around talking. We didn’t even have music playing. The bottom line was, Dad couldn’t sleep and the dementia was winding him up. As he closed the kitchen door, still mumbling, I made a decision. I told Richard I would be right back. I headed up the stairs and into the kitchen. As soon as I stepped inside I asked him, “Where is your walker, Dad?”
His glare softened as he looked at me. “In the bedroom. I forgot it again. But I can’t sleep with all this going on.”
I slowly began guiding him across the kitchen. I could feel his agitation bristling in his muscles. He stopped short and turned to me. “How many people are here right now?”
“6” I replied.
“You and me are 2. Richard and her are 2. Who else? That’s only 4.”
“Jordyn and Cameryn make 6,” I pointed out. Jeremy was at work so I deliberately left him out of my count. I knew where this was headed. We have been through this so many times before.
“Now, listen to me,” he implored me. “And don’t go setting pissed off. You always get pissed off when I say this.” I nodded but kept my silence. Here it comes…
“There are too many people in this house. We shouldn’t be doing anything that can draw our neighbors attention to us. They are all millionaires and they just aren’t use to a lot of noise and people running around. If we piss them off,they are going to go to the Board (Homeowner’s Association) and we are going to get thrown out of here. There are too many people here! I am just trying to make sure we don’t lose our house! Nobody wants to listen to me. You all think I’m just a crazy old man…”
I slowly counted to 10 so I would remain patient and quietly said, “I don’t think you’re crazy, Dad.” I let that sink in and asked, “Dad, when you and Mom brought your kids here weren’t there 7 of you in a house?”
“Hell,” he answered. “There were usually 10 or 12 of us. Friends of the kids, friends of ours…”
I felt him beginning to drift into old memories. I touched his arm softly and drew him back to the present.
“Was it a problem to have that many people in the house?”
“No,” he reluctantly admitted.
“Then I guess I just don’t understand what the problem is.” I handed him ½ a Trazodone and a glass of water.
He took it from me and popped it into his mouth. As he chewed it up and swallowed it, he thanked me. He said somewhat apologetically that he must have forgotten to have taken it.
“No, Dad. Dr. Hight wanted you to try taking half of your sleeping pill but that’s just not going to work tonight. You are cranky and I’m just trying to help you get some sleep. You look worn out.”
He hugged me and turned back to shuffle off to his room. I followed him closely watching him carefully for any signs of unsteadiness.
I got him settled into bed again… and reminded him to use the walker if he got up again… and kissed him goodnight again… and I told him I loved him again… and he thanked me again…
And today we will begin it all over again…
In light of the pain in the back of Dad’s head, the doctor was once again referring us to the Neurologist. The dizzy spells could be a symptom instead of a side-effect.
We went over his medications again, cutting several more in half. The biggest change for Dad would be cutting back his Trazodone from a whole to a half. (Trazodone is an antidepressant medication. It is thought to increase the activity of one of the brain chemicals (serotonin) which may become unbalanced and cause depression.
Read more: http://www.drugs.com/trazodone.html#ixzz0nv80eUx2.) It can be very useful for the treatment of sleeplessness. As we learned last night, Dad is not ready for a change on this medication.
Dad took his meds at dinner as usual. He was feeling off-kilter throughout dinner. My sister-in-law, Susan, and I left to go pick up Dad’s prescription. When Dad finished his dinner, he told Richard he was tired and going to bed (even though it was barely 7:30 and still quite light outside).
We got back just before dark. I went to check on Dad. His night light was off (which is highly unusual) so I leaned down and turned it on, which woke him up. I assured him it was “just me” and approached the bed. He was lying on top of the made bed without a shirt on.
I held out my hand. “I need your patch,” I pointed out.
“I took it off,” he replied automatically. His hand slid over his bare chest until he discovered the patch still firmly in place. “No, I didn’t.” He removed it and handed it to me.
I showed him that I had his credit card and said I would put it in his wallet. He nodded.
“Dad, are you ok?”
“I was feeling flukie at dinner so I decided it was a good idea to go to bed.”
“Flukie how?” I asked as I came back to stand beside him.
“I don’t know,” he couldn’t explain it. “Just flukie.”
“Dad, does your head or neck hurt?”
“No, I just don’t feel quite right… you know… I just feel kind of flukie.”
We were obviously getting nowhere with this conversation. I bent down and kissed his cheek. “If you get up, use your walker,” I reminded him. Please, Dad, I’m trying to keep you safe. I need you to help me. I need you around here.” He patted my hand and told me goodnight then closed his eyes.
I went back downstairs to hang out on our porch with Richard and Susan. About 30 minutes later, Susan went up to the kitchen for ice. She stepped out the kitchen door, closed it behind her and headed down the outside stairs.
She only made it a few steps down when the door flew open and Dad leaned out. “Susan! Susan! Did you hear me calling you???”
Susan froze on the stairs without turning around. “Yes, Dad. I did,” she replied with a sigh.
“You need to get back in here. Go in that room and go to bed!”
In her soft little singsong voice, she said, “Well, Dad… I’m hanging out down here with Richard and Shari right now. We are talking and visiting.”
His anger was palpable as she resumed her descent once more. “You don’t need to be hanging out,” he spat. “Our neighbors aren’t use to people behaving like this. Carrying on and making noise til all hours. These are decent hard working people in this neighborhood. They don’t like to be disturbed.”
Please note, it wasn’t even 9:30 yet and we had just been sitting around talking. We didn’t even have music playing. The bottom line was, Dad couldn’t sleep and the dementia was winding him up. As he closed the kitchen door, still mumbling, I made a decision. I told Richard I would be right back. I headed up the stairs and into the kitchen. As soon as I stepped inside I asked him, “Where is your walker, Dad?”
His glare softened as he looked at me. “In the bedroom. I forgot it again. But I can’t sleep with all this going on.”
I slowly began guiding him across the kitchen. I could feel his agitation bristling in his muscles. He stopped short and turned to me. “How many people are here right now?”
“6” I replied.
“You and me are 2. Richard and her are 2. Who else? That’s only 4.”
“Jordyn and Cameryn make 6,” I pointed out. Jeremy was at work so I deliberately left him out of my count. I knew where this was headed. We have been through this so many times before.
“Now, listen to me,” he implored me. “And don’t go setting pissed off. You always get pissed off when I say this.” I nodded but kept my silence. Here it comes…
“There are too many people in this house. We shouldn’t be doing anything that can draw our neighbors attention to us. They are all millionaires and they just aren’t use to a lot of noise and people running around. If we piss them off,they are going to go to the Board (Homeowner’s Association) and we are going to get thrown out of here. There are too many people here! I am just trying to make sure we don’t lose our house! Nobody wants to listen to me. You all think I’m just a crazy old man…”
I slowly counted to 10 so I would remain patient and quietly said, “I don’t think you’re crazy, Dad.” I let that sink in and asked, “Dad, when you and Mom brought your kids here weren’t there 7 of you in a house?”
“Hell,” he answered. “There were usually 10 or 12 of us. Friends of the kids, friends of ours…”
I felt him beginning to drift into old memories. I touched his arm softly and drew him back to the present.
“Was it a problem to have that many people in the house?”
“No,” he reluctantly admitted.
“Then I guess I just don’t understand what the problem is.” I handed him ½ a Trazodone and a glass of water.
He took it from me and popped it into his mouth. As he chewed it up and swallowed it, he thanked me. He said somewhat apologetically that he must have forgotten to have taken it.
“No, Dad. Dr. Hight wanted you to try taking half of your sleeping pill but that’s just not going to work tonight. You are cranky and I’m just trying to help you get some sleep. You look worn out.”
He hugged me and turned back to shuffle off to his room. I followed him closely watching him carefully for any signs of unsteadiness.
I got him settled into bed again… and reminded him to use the walker if he got up again… and kissed him goodnight again… and I told him I loved him again… and he thanked me again…
And today we will begin it all over again…
Saturday, April 3, 2010
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).
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).
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.
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.
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?"
"Four."
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.
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?"
"Four."
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.
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