body over mind

The Alzheimer's part of the equation seems to have taken a back seat to the physical condition in my dad's life. He continues to sleep a lot. The most he has been able to stay up is 3 hours. Today he played some solitaire with his caregiver, and with me, for about an hour. Yesterday evening, he and I played for awhile after dinner. But all of a sudden, he says he is tired. Off he goes to lay down, on a chair, couch or bed. Within a minute, he is sleeping. Naps linger on for hours and hours. He was served breakfast in bed over the weekend. He just couldn't get up. When he sleeps, I keep him hydrated by taking a drink to him and use a straw to cue his mouth. He briefly awakens and drinks it. Than, he's back asleep.

He's not eating even half of his usual meals/snacks. Sometimes, he misses meals completely because he is sleeping. Attempts to awaken him to eat bring a whining, pleading voice to "let me sleep, I'm so tired".

He continues to be short of breath with any amount of physical activity. I'm still assisting him to dress and undress. He is letting me into the bathroom without too much protesting, although he sometimes sounds just like my dad when he yells through the door, "don't come in!" He wins with that for awhile because, after all, it's my dad. His legs, feet, tummy continue to be swollen and very hard to the touch. His feet won't fit in his shoes anymore. He doesn't complain, except to say he is tired.

It's a rough time right now. I made an appointment to see my dad's doctor on Thursday evening to talk about his care. No way am I taking my dad anywhere, unless I absolutely have to do that. I'm hoping I will get some questions answered, some clarity or confirmation of my thoughts, and information that will help me care for my dad and plan.

A tired dad

16 hours of sleep last night. Up at 12:30 pm today. Bathroom, shower, brunch, nap right after that. Up once about 7 pm this evening to use the bathroom. Still sleeping...and it's 9:45 pm.

That says it all to me. My dad's body is tired. Really tired. As I type this, I hear him in the room next to me. He is talking. I can't really make out what he is saying, but he is talking away. I think he is dreaming a lot, and sometimes when he does get up, the dream is still there and it is real to him. Like when he was going swimming the other morning - or when we had the fire in the house - or when he's going golfing - and like this evening when he called my husband, dad. I would love to know his dreams. Is he remembering things? Is he visiting with old friends and family? Is he just out having a good time?

He's not talking any more. He's crying.
Such a terrible disease. What a way for him to spend this day. I think of all the other ways he could be spending his time. It could be a lot worse, I know. But somehow, that doesn't seem to be helping this sadness I have for him at this moment. I just hate this disease.

Hallmark says it all.

I received a card from my very dear friend, Pam. It has a verse that I couldn't resist sharing.

Watching a parent change can be difficult.
Where once stood a tower of strength, there is now a person who needs your care.
Those who taught you how to make it on your own can no longer do it all for themselves.
Helping a parent navigate these changes can take its toll,
So please be sure to take the time to take care of yourself, too.

So sweet. So true. I'll try. Yes, tears.
thanks, Pam!

erase that

It wasn't a terrible day, but it wasn't a lovely day. My dad slept a lot today. When he did get up, he walked to the back door in his undies and started to open the door. I said, "don't you want your robe on? It's kind of chilly out there." He said, "oh no, I'm going swimming." That was the start of the day.

I felt kind of bossy today, even though Pat was here. In my way, I demanded things of him. I made him take a shower. I did about 90% of his dressing for him. Several times I made him put on underwear, buffering my bossiness with an "I love you, Dad." Like I said, he slept a lot. His breathing...wow, he sure gets tired. And both of his legs are swollen now. I did get hold of the doctor's office today and asked for the results of his ultrasound. "Everything is OK, nothing showed up." So what is going on? Do I just accept that I have done what I needed to do in order to rule out anything really serious that could be treated? Do I just accept that my dad is 87, and things are just starting to fail? First the mind, now the body. ugh!

feeling a little overwhelmed

If I ever doubted my need for Saturday help, it is gone. This was the first weekend in a long time that I didn't have a caregiver for my dad on Saturday. So Friday, Saturday, and Sunday were mine. I could write about how many times I washed sheets, cleaned the bathroom, got my dad to shower, did meals, cleaned up messes...but I won't. I could talk about questioning my skill level at this, wondering how long I will be able to keep this up, the loneliness/isolation I am feeling, or how far behind I am with everything...but I won't. Let's just say that Pat can't get here early enough for me today. It's MLK day and I have the day off, but I'll still be working in my office. But I won't have to get up to do meals, clean, wash, etc. And I may even go somewhere, in the car, away from the house. Imagine that. It's going to be a lovely day!

3 of 27

Out of 27 hours, my dad was awake a mere 3 hours today. He went to bed at 7 last night and got up at 8 am. By 9, he was back sleeping until 2 pm when I woke him for lunch. By 3, he was sleeping again until 8, when I woke him for dinner. At 9 pm, he told me, "I'm tired". So off he went back to bed for the night. It is safe to say that he was really tired today, but why? His breathing was very labored today, especially after a trip to the bathroom or walking down the hall. While he was sleeping, his breathing was very loud, and the exhale sounded like gurgling. He has been talking a lot in his sleep, laughing out loud, and howling. What is this????

I'm disappointed that I don't have any results from his ultrasounds of a week ago. No news is good news? I called the doctor's office twice this week and they said the doctor hadn't "signed off" on them yet, meaning he hasn't read them yet??? I asked if he would please call with results, nothing or something, and they agreed.

His belly is very swollen. I never remember seeing my dad with a belly, ever. But without his shirt this evening, in those fashionable elastic waisted pants, it was clear that the swelling? is not down. (looks like he's about 7 months pregnant) I put my hand on his tummy and it was rock hard. His heart? That's my guess, but who am I to say that. Just a hunch.

And so I wait for results and wonder what I will do with them? I just want to know.

hey - any molars in there?

I still haven't gotten the results of my dad's ultrasound yet, but his swelling seems to be going down. Or am I just getting used to it? He's very tired. We just finished eating and his eyes were drooping. He's still up, but I bet it won't be for too long. But, you never know. He may get a second wind. He did a real good job while getting the ultrasound. We were there for almost 2 hours and he was great about it. The technician asked him how he became so patient (which is pretty funny saying this about my "other" dad - "patient? ha!). Anyway, he pointed to me and said, "ask Harriet" (his wife), "no, ask Helen" (my mom), then it was "ask her!" So I guess I am not always who I think I am.

Going back to the fact that we just finished eating...it does take my dad a long time to eat. A 30-45 minute dinner time is pretty typical. Tonight we had chicken, noodles, and broccoli. I was done way before he was, so I started watching. For each piece of chicken, there were at least 30 chews, and once it was 51. And he always picked up one noodle at a time, 15-25 chews a piece. No wonder it takes so long. I got to thinking, it's been a long time since I looked in my dad's mouth (if ever). I wonder if he doesn't have any molars left?

Aricept's side effects are coming into play. Diarrhea. yuck. But it does seem to be tapering off, which is a good thing. The other day, I ordered some reusable washable/dryable barrier pads, typically used in beds. They are a good size, 34"x36". I put one on a chair that my dad sits in (although a little late for this). And I have 2 more to place. We'll see how they work, and get more if they do. It's always something.

The Aricept seems to be getting my dad back to himself, or the self of today. There haven't been any extreme thoughts or behaviors in about 5 days. Yeah!

good stuff!

Day by day, this week has been a blessing! We've had 2 days now when my dad seems back to his "normal" self. He's no longer doing a fire drill with us. He hasn't gotten dressed to go to work, home, or golf like he had been doing. He is less agitated, and more content. whew. My new mantra...I will never take my dad off Aricept again! I'll take this "normal" any day!

But now...he is having some physical problems. He had an abdominal and leg ultra sound today. He's been swelling the last month or so...and he is sleeping A LOT. I even had to go and get him some new pants this week because there is a 3 inch gap between the fastener at the waist. At first, I thought he was having problems with the fastener itself. But now I know...his tummy is swollen. I went and got him some of those groovy elastic waisted pants. He is quite styling now. :) Now we just have to wait to find out the results of the test - and see if they tell us anything or not. The doctor gave him a water pill, hoping to get rid of some of the fluid. I haven't filled it yet, and I don't know if I will. I dread more trip/misses to the bathroom. But if I have to, I will....and I'll be dragging my feet too.

87 and counting

January 5th was my dad's 87th birthday.

Happy Birthday, Dad!

He loves his chocolate cake!

Diabetes Shmiabetes!

His Reality

I am writing this entry to emphasize the power of this Alzheimer's Disease. Although you may giggle at the incident, it was so real to my dad. I saw such fear in his eyes, his actions, and his words. There was nothing I could do to calm him but to enter his world for a short time.

At 1:30 am this morning, my bedroom door was flung open, hard enough for the handle to hit the wall. I sat up, and my dad was standing at the entry all dressed. In his booming, deep voice he yelled, "Get up! There's a fire! Hurry! Come here!" Of course, I leaped out of bed and ran to him. He yelled in my face, "Fire!" He was just frantic. He went to every door and opened them, yelling inside, "Get out! Fire!" "Get the boy!" "Fire!"

I followed him down the hall into the living room/family room area. Both the front and back doors were wide open letting in the cool night air. "We have to go! We have to go see what's outside". I said, "but it's so cold out". He said, "I don't care how damn cold it is". So about 1:35 am, I went outside with my dad, dressed in my nightgown and flip flops, and we walked up and down the street. He was still breathing hard, quick short breaths, and looking up and down the street. His eyes - so scared. I hooked my arm through his, and tried to slow the pace. After about 15 minutes, we were in front of our house, and I guided him inside. He sat at the table, "I'm so tired". But he wouldn't go back to bed. I got out a game, and we silently played tic tac toe (a game that has a board and plastic X and O) Initially, he was just tossing the O on the board, one right after the other. He gradually calmed, his breathing slowed, and he began to pay attention to the game. When he started to consistently beat me, it was about 3 am. Somehow, I got him to go sit in the lazy boy and he fell asleep in about 5 minutes. I locked the screen door in addition to the wooden door. Then I laid on the couch. No way was I leaving him! Last I looked at the clock it was 4:30, and he got up about 6:30. This time, he told me he had to get ready for work. So he went and changed his clothes, put on his good shoes, and I made him coffee and a light breakfast. As soon as he was done, he put on his sweater and said he was leaving for the office. I reminded him that he had a vacation day today. "Oh yea". So he took off his shoes and went to lay down in his bed. He is still sleeping now and it is past 1 pm. He says he is too tired to get up, but I'll keep trying.

What more can I say? It was a bad night for him. I learned early on that A.D. patients operate out of fear, and this is a clear example. I had to enter his world. It was his reality. Trying to convince him otherwise is a waste of time, and would only bring out his stubborn, belligerent side that would protect himself. I really can't blame him for that. We would all do the same thing in our reality.

I HATE ALZHEIMER'S DISEASE!!!

Back on Aricept

Holiday preparations have been completed. Christmas has come and gone. A year has passed, a new year is here. My dad has no idea. He did not get the connection between the Rose Bowl and New Year's Day. He was shocked when I said, January 1st, 2009. Did I really expect anything differently? I guess I just continue to hope.

During the past few months, there have been a lot of changes in my dad. He is quieter. He is more confused. He has been agitated, restless, and showing changes in his sleep patterns. At times, he has been unable to find the bathroom, his bedroom, his clothes, or the garbage can. He has fallen, and the soreness? from that, or the gradual weakness from not doing much, has impaired his ability to get up from the couch, chair, and the toilet. I have noticed that he becomes confused when new types of foods are given to him. He put some butter on his salad the other day. He used a fork and knife to eat a taco. Although seeming content, he has, on several occasions, said he was going home and wandered around the house making sure he "had all his things". He has come up with some interesting things that I have never heard before. The other day, he told me that he was arrested the previous night and spent the night in jail. He kept calling himself a "jailbird". And I want to know who Lawrence is. I have never heard of him, but apparently, Lawrence is "his" son. I have been called honey, dear, Harriet, Gini (his sister), and have been thought to be his wife, whoever that may be. We had another "threesome" this past month, and I have been awakened by my dad so he could "chase" me.

So, the decision has been made and he is back on Aricept. I'm hoping that it has been the lack of that, and not the disease's progression, that has caused daily incidences of increased dementia.

Happy New Year to all!