Christmas Eve - an early gift

I've had this in my head most of the day...

Twas the morning of Christmas and all through the house
Not a creature was stirring, not even a mouse.

I awoke to find my dad had a fall
His head was all bloody, a hole in the wall...

It was about 4:30 am and I was having a coughing attack. I got up to take some cough medicine, and found my dad sitting on the floor of his room, right by the open door. I turned on the hall light, and he just looked at me. "Dad, you OK?" "I'm fine" was his response. I hurried to awaken Tom because I wanted some help. I wiped my dad's head, and found the blood had already dried. I flashed back to a "kaboom!" I had heard about midnight. I thought he had rolled over and hit the wall. I was sure of it when I heard him mumbling, which he does in his sleep. But seeing the blood had already dried, I am pretty sure he had been sitting there for hours. During the transition from the floor to a chair, I realized that my dad did not know that he could have called me for some help. I also saw that he had no idea how to get himself up. I ended up sitting on the floor next to him and showing him what to do with his legs so he could get up into tall kneel. He did imitate what I did with my legs, but Tom and I had to help him up to kneeling, and then help him to position his foot so he could push up to stand - again with some help. He had obviously been getting up to use the bathroom, so there was that mess to clean up, but it seemed insignificant to the fall. And it was a good one. There is a hole in the wall, about a 6 inch circle and about an inch and a half deep, where his head hit. (He told me not to worry about it, that he would fix it later.) He has some good scratches in that area of his head, and a deeper gouge just above his eye at the end of his eyebrow. I told Tom that God had given us an early Christmas gift - no broken bones. It could have been a lot worse than it was.

So...today I looked up the symptoms of a concussion -
http://www.mayoclinic.com/health/concussion/DS00320/DSECTION=symptoms
Ask my dad if he had any of the symptoms? Nope. The most common symptoms, confusion and amnesia. Can't use that as an indicator. No vomiting, no slurred speech. Headache, dizziness, ear ringing? Can't trust his answers. So we'll be looking for the nonverbal cues, as discussed in the article. He seems OK, but today was the first day that he needed help getting off the toilet. I could attribute that to soreness from the fall. It was also the first day that he put on 3, count 'em 3 shirts. Not one then another, but 3 on top of each other. He always tucks his shirt in, and with that extra bulk, he had quite a hard time fastening his pants.

Lessons learned:
* There is now a night light in his bedroom. I had thought it best to keep his room dark so that he would sleep, and not get his days/nights messed up. But safety is winning out.
* My dad does not know to call when he needs help.
* I was able to go into the bathroom and help him get down and up.
* Tom was able to go into the bathroom and help him get up, even though he was protesting.
* We are going to get some type of bars to help him in the bathroom.
* I need to role play with the caregivers in case my dad falls when they are here.
* Keep all doors SHUT except for his and the bathroom, day and night. The master bedroom door was open and he went in there to use the bathroom. That toilet is lower, and he was in there forever, ("I'm fine"), and he could not get up without help.

My dad slept til 12:30 pm today. I think it was because he was up most of the night sitting on the floor, not because of the head hit. I am hoping that is what it was. He ate well today, and enjoyed our Christmas Eve dinner, watched football, and was his usual quiet, pleasant self.

So I'll keep my eye on him tomorrow. Poor guy. I think he's gonna have a black eye.

A sincere Merry Christmas to all!

pick, pick, pick

This is kind of gross, but my dad picks. He picks any anomaly on his skin. Anything that is above the skin's surface is target. It doesn't matter if I put lotion on him every day. I don't think it has anything to do with dry skin. It's "old man skin" I tell him. So he picks, and he bleeds. His legs, arms, head, and chest all have sores. I clean them and bandage them, and sometime during the night, or just later, he takes off the bandages. Then...picks. It's a mindless activity for him. His fingers will be full of blood, the front of his shirt soaked, and he will have no idea what happened to him. There is one sore on his leg that has been there, I would guess, 5 years. Maybe longer. It almost heals, and then, you guessed it. He picks. It's the weirdest thing. My job. . . .I know I can't stop it, it is what it is, right Jean? I have a large container filled with cotton balls, Aloe Vera, Neosporin, gauze, band aids of every size, and tape. It's my daily friend to keep things clean and covered. It's all I can do. That's what I pick to do about this symptom of A.D.

He's still got it!

Have you ever played Scrabble for 2 hours? Not 2 hours of game after game, but a 2 hour game? I just finished playing that with my dad. And he beat me too, 258 to 172! How can someone that puts words like isawfi and wezsa on the board win????? It was the first time we've played it since he's been here. I was surprised that he wanted to play it when I made the suggestion, and even more surprised that he could play it. The more words that got on the board, the harder it was for him to play. That's when isawfi and wezsa appeared. It was one of those lessons learned tonight. I learned that my dad could do it, yea, Dad! I also learned that I have a lot of patience! Maybe it made me have that patience, and wow, was I patient! Yea, me!

sitting on the fence

Decisions, decisions. What to do about Aricept. My dad has been off Aricept for about 6 weeks now. Was it helping? Seems like maybe it was. He is quieter, seems more confused, has been less of a game player (both not wanting to and has poorer skills), and other things. Is it the progression of the disease? I do know that people with A.D. can stay at the same level for years, but I have also found, from my support group, that people can change rapidly. Was Aricept helping him to function?

Per WebMD, "Donepezil (Aricept) is used to treat mild to moderate confusion (dementia) related to Alzheimer's disease. It does not cure Alzheimer's disease, but it may improve memory, awareness, and the ability to function. This medication is an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain."

The most common side effects include:
Nausea -- occurring in up to 11 percent of people
Diarrhea -- up to 10 percent
Headache -- up to 10 percent
Insomnia -- up to 9 percent
Generalized pain -- up to 9 percent
Dizziness -- up to 8 percent.

Was he having these side effects? I have no idea. I don't think so.
Like I said, decisions, decisions. And I do not know why headache and insomnia are highlighted above in the list of side effects.

Not getting feedback from my dad about his health, or much else, is really hard. He can't tell me he doesn't feel well, or if something is bothering him, or if something out of the ordinary is happening to his body. His one leg has been swelling, and he never complains, but I see it daily when I clean and bandage his leg sores (that some mystery person is picking). One thing about this disease is that the caregiver has be be very aware, ever vigilant, and have good observational skills. Being the detail person that I am, I do notice little things that others would probably miss. But being in this situation with my dad, I choose to ignore a lot, just saying that this is the way it is. Deciding what is important...there's the challenge.

Now what do I do about this Aricept?

Still grateful

With the holidays approaching, or any upcoming event, I need to be careful about what I say to my dad. I still put up decorations, and will comment to him about them. He has even helped me with a few things. But saying things like Christmas will be here soon, or I have to do my shopping, or talking about an upcoming event...those are no-no's. I need to remember to keep to the present. Tom is really good about this, but I sometimes have trouble with it. When I do, my dad says things like, "Christmas? I have to get home". The look on his face is confusion, and I hate that. Sooooo, my topics need to be closely monitored, by me! I need to avoid the "open mouth, insert foot!"

I've noticed a few things about my dad lately. In the mornings, I say to him,"good morning! Did you sleep well?" His typical responses are things like "I slept like a dog", or "I slept like a coon (raccoon)". This morning, he said, "I slept like a boon". Other word finding things I have seen are - he has gotten lost when saying the prayer before meals, that he was unable to recite the Lord's Prayer when the Eucharistic ministers came the other day. (He also said, "no thank you, not today", when communion was offered.) He's had some problems with the car seat belt, and some clothing fasteners. :( But, on a positive note, he still dresses himself without any help (except for me putting the dirty clothes in the basket so he won't put them on again), eats independently, and he showers himself, with prep work by me. :) And, of course, he is still very cooperative with his haircut, shaving, and teeth care.

According to this site, http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp there are 7 stages of Alzheimer's. My dad has all of the symptoms up to and including stage 5, and some in stage 6.

I'm kinda lost for words after reviewing those stages.
But I continue to be grateful he is here with us, and am blessed that my family has been so supportive. Thanks again Tom, Dawn, and Smith!!!

Three thoughts

1. Most of us, at sometime, have problems falling asleep. As a woman, I think men have less of a problem with this. Sometimes, I swear my husband falls asleep in as few as 4 breaths. I remember my dad being like that too. But today, I was really shocked. I was giving him a haircut and shaving him. It's a weekly thing, that takes about 5 minutes, tops. I had already cut his hair, and was trimming up his beard, and his head went to the side and Zzzzzzzzzzzzzzzz! Amazing. Was it because he is a man? old? or just plain tired? I kept on shaving him, and I guess he was startled awake by a hair pull... OWWW! I finished him up, and he needed help with his walking/balance back to his room. By the time I threw the blanket on him he was snoring again.

2. During my endless rambling with him while he was eating breakfast today, my dad told he that he was going to be 62 on his birthday in January. I told him if that was true, he had me when he was 9. That gave him a big smile and the house was filled with his LOUD LAUGHTER!

3. My son left to go back to college a while ago. When he said goodbye to his "papa", my dad said, "see ya later. I'll be thinking about you, pal."

The mind. I'm not even going to try and figure these three things out.

Thanksgiving Day

Family, food, football. That was today. I am grateful that everyone was here to share the day. I am grateful my dad was here to have Thanksgiving dinner with us once again. He is just too cute when he says prayers before dinner. He's so reverent, so ritualistic when he says it. Although, somewhere along the line, he and his wife changed the words to the prayer, he still says it with gusto! He ate more than the rest of us. Typically, he is slow eater, and it takes him at least 3 times as long as us to eat, but today, he won the prize for most eaten too! He's been especially quiet lately, even during the week with his caregiver. Today was no exception. He didn't interact with the visiting dogs too much, and his talking with us was only in response to our questions or comments. Still, I am thankful that he has recovered from his respiratory illness, and happy that he enjoyed his day. :)

The past, the present, the future

Two weeks ago I went to my support group. We had missed the month of October because the facilitator of the group was out of town. There were just 3 of us in attendance, plus Renee.

http://www.acompassinatevoice.com/ Before I forget, this is the link to Renee's website and it gives information about her books, "When a Voice No Longer Speaks" and "The Aftermath of Alzheimer's Disease". To my cousin, Bonnie - it sure took me long enough to get you that information!

Each of us at that meeting are at a different place along our journey, but traveling the same road. I found it a nice coincidence that the three of us were there at the same time, with no one else but Renee.

Lynn (also known as me about 2 years ago) - is traveling back and forth to the Midwest, discussing with siblings/father about her mother, figuring out what is important to do, getting information about health care and financial power of attorney, planning, observing, worrying...

India - (also known as me at some time in the future) has had her mother in law living at her home (with her family) for about two years. The decision has been made to find a placement, and she and her hubby are exploring that together.

And in the middle of these wonderful women, is me.

I do know that some time in the future I will be where India is. I know that I will know that it is time, just as she now knows. Something to (NOT) look forward to.

Update on health - my dad is back to himself. Best of all, that sick cough is gone. The regular cough remains.

Calgon, take me away!

My dad continues to have a low grade fever. He has a doctor appointment on Thursday, so we can address that then. He has been happy, eating/drinking, and without complaints. Me, on the other hand, I have a complaint. His cough is driving me crazy! It is pretty constant, with maybe two or three minutes in between, and every time he does it, it is like fingernails on the blackboard to me. Sometimes, I just have to get away from him. I'm on sensory overload!!!!!!! Don't mean to complain, but part of my blogging is to get it out and feel better that I have said it. There... I said it. No solution to this one at the moment.

Sickie Dad

My dad is still not back to himself. Day #5 of an antibiotic still hasn't kicked it for him. He's the best sick man I've ever known, although I do remember him not being like that when he was younger. He is still coughing, wheezing, sleeping a lot, and has a fever. This morning, after eating his breakfast with his caregiver, he lost it, aka vomited. Since then he hadn't eaten/drank too much, per Pat. So when it was dinner time, I made him a light, bland dinner, and told him it wasn't too exciting of a meal since he vomited earlier in the day. He said, "that wasn't from being sick, it was from something else". When I asked what, he said, "I was rastling (wrestling)". huh? Made me laugh inside. And another thing, while he was napping before dinner, I happened to see him fishing! No fooling. He was winding up his reel, then casting it out. Twice. hmmmm... dreaming of the one that got away, Dad?

I am bad, bad, bad!

But I forgive myself. I forgive myself for saying something that shocked my dad, because he didn't "know". I forgive myself for trying to convince him, and then saying the wrong things. Challenging his reality led to him defending himself with a loud, finger pointing encounter. And that look on his face...that confused, hurt, sad look broke my heart and made me cry. I should have known better. I do know better. But I admit, for a few moments, I forgot. I know that sounds stupid, but I did. I forgive myself, but I won't forget the lesson. My bad.

suffering in silence?

I know that my dad is a poor historian when it comes to his health. He denies having Diabetes. He has no idea what all the surgical scars on his chest and abdomen are from. But I never thought he'd be unable to tell me that he didn't feel well. I never thought he couldn't tell me what was bothering him.

We went to the doctor today to talk with him about the results of blood work from 2 weeks ago. I knew something was up with him for about the last week. He seemed really tired. We went for a walk and I heard him wheezing. And that ever present cough has worsened. It is non productive, and I can hear it rattling down there. It's like he needs to be suctioned! Yesterday, I asked him if he was feeling poorly and he told me his back was hurting. But I hadn't seen, and have yet to see, behavior that says that. No extra time needed to get up, no grunting or groaning...

Anyway, the doctor thinks he has either bronchitis or pneumonia. He had more blood work taken today, a chest x ray taken, and has an antibiotic to take. I thought he felt warm and took his temperature about an hour ago and it's 102.5 Most people would be complaining and laying around, or more than likely sleeping. Not my dad. He's not acting the way sick people act. Yes, he's a tough ole' guy, but man, at 102.5 I'd be sprawled out whining with a cold cloth on me.
Here's another thing learned about Alzheimer's. Marcia Detective is my name. Gotta be ever watchful, suspicious, and momlike I guess. whew

Sunday evening...

When we went to the new doctor a week ago Friday, I talked with him a little about Aricept. I have no idea how long my dad has been taking it and I don't know if it is working. Since he's been here, there have been some changes, both good and bad, but significant ones? I don't know.
And add to that, it costs $170/month out of pocket, which is totally worth it if it has some type of positive effect. In the class I took about Alzheimer's, they talked about medications and how they are typically more effective with mild cognitive impairments. That's not my dad. So I talked with the doctor about it. He recommended to d/c it for about a month, and we will know if it was helping or not. So my dad has been off it for 9 days now. I don't see any changes. Time will tell. Or it won't.

He had another appointment with that doctor on Friday, but at a different office. We got in the area about 30 minutes before his time, but Ole Marcia couldn't find the building. The phone number on the card had been disconnected. The (number at the) office we went to the week before was closed. And there wasn't a building with the address on it. hmmmmmmm? Soooooooooooooo, we didn't make it.

My dad and I had 3 days together this weekend. All went well. But...I am looking forward to going back to work tomorrow. :)

a moment

Last night I went through the night time routine with my dad. As we hugged good night, he said, "thanks". I said, "what for?" He said, "for being so nice to me". That made me feel so good!

The hunt is over!

Pat, my dad's caregiver, found my dad's college ring. She was so excited when she found it that she called me. I didn't get her message for a few hours and called her, and she was still excited. And when I got home, she was still excited!!! It was in one of his shoes in his closet. How did it get there? Tell me if you know. In the mean time, I am happy it has been found and it is safely in his desk drawer with his wallet. If he ever asks about it, I'll probably give it to him. But in the mean time, it is safe. Maybe his fingers have gotten smaller and it slipped off? hmmmm?

wood work

hmmmm....the layout didn't go very well. :)

But here are some of my dad's wood carvings.

"Did I make that?"

Oh yeah, dad, you did!

(Somebody has to help me with these layouts!)

A new friend

My friend, Cheryl, came over on Friday to visit. She brought her 14 month old daughter, Taylor along. My dad really enjoyed their visit, as you can see! Silly smiles! :) It's amazing how a baby or toddler just bring him to life! Dogs too!

And the hunt is on...

When my Dad first came here, going through his stuff filled up my days. Sneaking into his wallet while he showered, I was able to remove important stuff like his social security card, insurance information, and charge card. I left his driver's license in there because I knew he would know if that was missing. There has never been a problem with his wallet's contents. In fact, he has stopped putting his wallet in his back pocket.

He wears a silver necklace with a cross on it, and when I asked him how long he's had it, he told me forever. So I don't know how long he's had it. He wears a watch, and his college ring. The story I remember is that he got the ring when he graduated from Central Michigan University, I think in 1951. Somewhere along the way, it was lost. And on their 25Th wedding anniversary, my mom gave him a new one. He loved it. He was very proud of it. And the other day, I noticed it wasn't on his finger. I reactively said, "where's your ring, Dad?" He looked at his hand and said, "I never take it off". I told him that we'd find it, and changed the subject. So far, we haven't found it. I know for sure he had it on 5 weeks ago today, the day that Lisa started to come on Saturdays. After that, I don't know. I've looked through his drawers, clothes pockets, all around his bed, his closet, and even in my mom's silver cracker bowl. No luck. I know it is here somewhere, or at least I hope it is here somewhere. It could have been thrown away while he was cleaning up after a mess, but he never takes it off! Or I should say, he has never taken it off. But he obviously has taken it off. The good thing is, he hasn't mentioned it at all since I asked him about it. The bad thing is, part of me feels really responsible that it is lost. The other part of me says, it's just the way it is. Another time I can say, I like the way the other part of me thinks.

And...we went to meet my dad's new doctor yesterday. I really liked him! He was kind to me and to my dad. He listened to me! Can you believe that? A real live doctor listened to me! My dad had some blood work done, and we are going back next week to talk about that. I think this is going to be a good thing.

Interesting....

I found this in a blog that I follow. http://www.delanydean.com/ No, I don't know who she is, but I find her to have some good information for me, or at least some things to think about. - M

10 Things to Know About Assisted Living

By Jane Gross
Dr. Cheryl Woodson is a seasoned geriatrician in Chicago Heights, Ill., who has found that she can no longer afford to accept new Medicare patients. She is also a blunt and funny woman who liberally dispenses wisdom to her elderly patients and their adult children, and herself a daughter who cared for her own mother with Alzheimer’s disease for a decade. Here’s some of Dr. Woodson’s advice on navigating the care giving maze.

1. Assisted living, a popular solution for elderly people who cannot live independently, is a “myth,” Dr. Woodson said, “a place for people who don’t exist.” Families often believe these facilities will meet all of their loved ones’ needs, enabling caregivers to focus on jobs and family, only to find this isn’t the case. Before long, the elderly resident will require more than “meals you don’t have to cook, grass you don’t have to cut and socialization,” Dr. Woodson said. At that point the elderly resident is in trouble, since assisted living facilities are not permitted by law to provide medical care and consider it to be the family’s responsibility.

2. Squaring a family’s expectations with those legal limits would require a thorough, first-hand assessment of the elderly person’s physical and cognitive health before admission to an assisted living facility. That rarely happens. New residents are admitted based on a report from their current physicians, who may not be qualified to diagnose the early signs of dementia and impending immobility or may sugarcoat the situation in order to help a desperate family. “They just need a little help,” the usual rationale for accepting elderly prospects into assisted living, is ridiculous on its face, Dr. Woodson said. “If they just needed a little help, they’d still be in the community.”

3. Instead, without verifying the physician’s report or the family’s representations, these facilities may admit residents who already need help with simple tasks like dressing or eating, or will in the very near future, and then charge extra for these services. Some do this to fill empty beds; others give residency a shot as a kindness to desperate families, Dr. Woodson said. But when the resident declines, as all of them will unless they die suddenly, more and more a la carte services mean a bigger and bigger monthly bill, or more and more work for family members who expected the opposite.

4. Coordinating all the services that the assisted living facility doesn’t provide generally falls to one sibling, Dr. Woodson noted, who then becomes overwhelmed, sacrificing more than should be expected. The solution is hiring a geriatric care manager — “They should be called rent-a-daughters,” Dr. Woodson said — adding further to the expense, until the resident and family can no longer afford this kind of accommodation and are forced to consider a nursing home.

5. Most families balk at the prospect of transferring an aging parent to a nursing home because they like the aesthetics of assisted living — the carpeted floors, overstuffed chairs and crystal chandeliers. But without round-the-clock care, many residents are “as alone at night as if they were in their own homes,” Dr. Woodson said. Other families are unwilling to break a promise to Mom or Dad never to put them in a nursing home. The spirit of that promise — to give a parent the best possible care — is what matters, Dr. Woodson said, “and sometimes that means not doing it yourself.” An aging parent’s condition may eventually require three shifts of nurses and aides, not a family member trying to take care of everything 24/7.

6. The doctors who see residents at assisted living facilities are essentially freelancers, not employees, since their fees are paid by Medicare and they also may maintain private practices. So rather than hang around the facility expecting them to answer your questions on the fly, Dr. Woodson suggested calling and arranging to see them “by appointment, not by ambush.” This consultation will not be covered by Medicare unless it coincides with a medical procedure for the resident. Still, it is essential in order to stay on top of an elderly person’s medications, some of which may be unnecessary and even dangerous, and to make decisions about which medical care improves the quality of life and which is pointless and wasteful.

7. If a parent lives in an assisted living facility, families should closely monitor the monthly pharmacy bill, less for cost than for content. Is Xanax being prescribed for anxiety? There are numerous other remedies available without the potentially dangerous side effects. What about muscle relaxants for arthritic pain? They increase confusion in the elderly and add to the risk of falls; instead, ask for pain medication and/or a heating pad. If the assisted living facility offers to have prescriptions filled and delivered by a local pharmacy — a huge convenience for family members — be sure it’s a pharmacy that insists upon periodic blood work or other tests for drugs that are supposed to be closely monitored.

8. The goal of medical care for the elderly, in Dr. Woodson’s view and the view of every geriatrician I’ve ever interviewed, is to make day-to-day life more comfortable, not to cure illness or extend longevity. Examples? A joint replacement to relieve pain and improve mobility makes sense only if the patient has the cognitive ability to complete physical therapy. Otherwise, he or she will never walk again and would be better off avoiding surgery and simply being kept comfortable. Similarly, anyone who would refuse cancer treatment because of advanced age probably doesn’t need a mammogram, Pap smear or colonoscopy. “Why draw a map to someplace we know we’re not going?” Dr. Woodson asked.

9. Apply similar standards to immunizations and vaccinations. If someone is so ill or disabled that death would be welcome, refuse the vaccine for pneumonia, long known as “the old person’s friend.” But never say no to the shingles vaccine, which can prevent an excruciating rash. “Even if someone was only going to live five more minutes, that’s the one thing I’d suggest,” Dr. Woodson says. “It’s a quality-of-life issue.”

10. Do not assume that the presenting symptom of Alzheimer’s disease will be forgetting words, losing things or other obvious examples of short-term memory loss. Often the first thing a family member will notice is an empty checking account, Dr. Woodson said, because a normally cautious and frugal person has been tricked by a get-rich-quick scheme or other scam. And like missing money, look out for pills missing from those seven-day dispensers that help people with multiple medications keep track of what they’re taking and when. Family members may find the dispensers empty and worry about overdose, Dr. Woodson noted, but often the missing pills will turn up under couch cushions or scattered elsewhere around the house. Take this as a cue that it may be time for a cognitive assessment.

surprise!

I had quite an interesting thing happen last night. I know I was sleeping, when I felt Tom sliding back into bed. I moved over so he could get in, as it seemed I was close to the edge. But wait... why was he getting in my side of the bed? Maybe I was way over on his side and he felt it would be easier to get in on my side than get me to move over? But that didn't make sense. I began to drift back to sleep, but for some reason, I reached to find Tom. Yep, there he was. And the clock said 12:45 am. But something was behind me. Did one of the kids come home and climb into bed with us? omg You guessed it, and so did I. It was my dad.

me - hey dad
dad - yes?
me - I think you came back to the wrong bed.
dad - what the hell?

He immediately scrambled up on his feet and asked "where the hell am I supposed to go now?" I got up, suddenly hoping that he had his underwear on - which he did- whew, and walked him back to his room.

dad - "Is there anyone else in there?"
me - "no, Dad, just you".
dad - "OK, night"

Yes, it was funny. It's OK to laugh. But now I have to figure this out. All the doors in the hall are shut at night, except the bathroom and our room. I feel like I need to keep ours open so I can hear him get up, check stuff, etc. Obviously, I didn't hear him get up last night. There goes that theory. There is a night light in the hall, and one in the bathroom. He gets up every night 1, 2, 3 times. Why did this happen tonight? There goes my theory about how routines help. (they really do help, but not tonight! ) There goes my thought that the lighting I have in the hall/bathroom is enough. Today, I was thinking about getting a motion sensor night light to put in his room. I thought that when he got up, the light would go on and still be on when he got back. I looked online, and the longest any of them stay on that I found was 60 seconds. No way that is long enough. Perhaps I just need to shut our bedroom door. Anyone have any other ideas?

What are you thinking about?

Here is a tidbit of the table talk at dinner last night -

Dad - "What are you thinking about?"

Me - (I was really thinking about nothing, but didn't want to say that)
"oh, I was thinking about all the sounds I am hearing...lawnmower behind us, the kids on the skateboards out in the front, some one's car alarm going off... What are you thinking about? and don't tell me nothing."

Dad - "I was wishing that I had a lot of money".

Me - "What would you do with all that money?"

Dad - "I'd set all my kids up so they never had to worry about money".

How sweet is that?

Guilt

You can't believe how much guilt I have right now. Now isn't the only time, but it's bad now. I have spent the last 2 1/2 hours doing paperwork. Once in a while, I have gone out to check on my dad. I admit that I set him up in front of the TV - like a babysitter. I hate that. But there is stuff I need to get done! But I feel bad I didn't spend more time with my dad tonight. And yesterday was the day I usually give my dad a haircut and shave, but I didn't do it. I didn't have a caregiver on Saturday, and after Friday/Saturday/Sunday...I just had no more to give by Sun afternoon when I could have done it.

I never thought he'd be up as late as he was tonight. I got up at 6:30 this morning, and when I went out into the family room, there he was...all dressed and with his sun glasses on! No messes anywhere either. yeah!

Me: hey Dad. Did you know it's only 6:30?
Dad: I'm wide awake!

I went and got his regular glasses for him and told him that we'd trade. As he took off his sunglasses, he said, "it's not as dark as I thought it was".

He really wasn't wide awake. His eyelids were drooping, and he appeared to be nodding back to sleep. But it was morning for me, morning for my husband. Coffee being made, dishes being put away, noses being blown :) within a few minutes, he really was wide awake. Sooooooooooo......... breakfast at 7:00 am. Kind of messed up my schedule, but I made it OK. Anyway, no naps today, and he just went to bed. Like I said, I wasn't expecting him to be up this late.

The guilt - I know I have to get over that. But man oh man, how do I do that? Sometimes it's harder than others times. I think I like the other times.

A blessing for my dad

I arranged for Eucharistic ministers from church to come to our house and give communion to my dad. I told him about it last night, and he said, "that's so nice, honey, thank you."

They (a couple) came today and he was quite cordial and pleased with their visit. He said prayers along with them, and engaged in some chit chat with them afterwards. He asked them where they were from, if they were retired, and where they lived now. The woman asked him if he ever goes to church at St. Andrews and he replied, oh yes, every week. He also told them that he was visiting me when they asked how long he had been here.

Later in the afternoon, I asked my dad, "what's up?" He said, "I am. I had communion."
Yes, a blessing indeed.

Tuesday stuff

With all the busy-ness of work and home, I admit I have a hard time keeping up with it all. Last night, I was reminded that I have to keep up with it! In my basket of "stuff to do for my dad", I found an overdue bill for his health insurance. I was kicking myself! I mailed it off this morning, but all day I was fretting over it. What if his insurance is cancelled because of the late payment? That's all I need! I called the insurance company this afternoon, and he does have a 90 day grace period. whew. Scared the bejeebers out of me.

My dad's doctor is leaving the practice, so I have made an appointment for him with a new one in a few weeks. I have all the stuff to do all over again...paperwork, records transfer, telling the story once again. I hope it isn't upsetting to my dad. He did only see the original doctor 4 times, but still, here is a new one to get used to seeing...for him and for me. Will he remember? I have no idea, but probably not. I think I often assume he will remember something, or react in a certain way, and typically, it's never the case. Word is this doctor was kind to my friend's in laws, and I'm hoping the same will be true in my dad's case.

Cooler evening = a walk!

I did one of my sneaky tricks - and my dad went for a walk with me this evening! I couldn't believe it - and we even made it all the way around the block! He used his cane, and when he said, "grab a wing, chicken", I hooked my arm through his, and off we went. About half way, I noticed he stepped on his shoelace and it came untied.

Me: hey Dad, lemme tie your shoelace.
Dad: No, it's fine.
Me: I went in front of him and I bent over while reaching for his lace.
Dad: He kicked his foot around me and continued strolling.

Guess he didn't want to have his shoelace tied.
I find it quite amusing how he asserts himself at something like that. Not about being here, not about his home/car/wife, not about me making him wear "underwear". Nope, they don't seem important. But that shoelace sure was. It was in the present and that's all that matters to him.

another change of attitude

You know how that saying goes that someone always has it worse than you? So true. I have heard of so many heart breaking things going around here. I am feeling very grateful, and ashamed that I have had complaints lately. I think I will always call them concerns from now on, or things to think about, or challenges. Yes, that's a good one, challenges. Challenges make you rise to the occasion. They make you examine the concern and find solutions, or come to some type of acceptance. I guess I have been doing that, but sometimes, I have been whining. Maybe not on here, but I have been in my head. So no more of that! I have absolutely nothing to complain about. And for those I know that are having challenges, you are in my thoughts and prayers. Hugs to you all.

Where oh where did my father go?

I'm happy to say that the obstinate, belligerent man is gone...for the time being.

My son came home for the weekend, and we had a family dinner. My dad was so quiet at the table, despite all the commotion around him. I am very aware that A.D. is responsible for this, but I can't help but wonder what he is thinking about. It's like he's lost in space... His responses are almost always generic. What a thief this A.D. is. My opinionated dad has no opinions. Social skills - gone, except for politeness. Independent hygiene skills, nada.

Yesterday was my second Saturday with Lisa coming to stay with my dad. I did a few things outside the house with my son, and then took a nap. I wanna slap myself for doing that because I could have gotten things done. Oh well...it was a nice nap. :)

flip/flop

The dad I know is an honest guy, a virtuous guy, a moral guy. Cheat on his taxes? No way! Call in sick when he wasn't? Nope. Say he would do something and not do it? No, that's not him.

But tonight, I am wondering...can I put him in time-out for lying? Should I get in his face and say, "liar, liar, pants on fire!"? Take away his TV privileges? Make him go to bed without dinner?

I hope you know I am kidding. Really kidding. But this obstinate, belligerent man was here today for both the caregiver and for me. He refused to take a shower (when he really needed one, still does). He refused to go put on a pair of underwear (aka depends) when he didn't have any on. He refused to change his dripping pants in the bathroom instead of his bedroom so he wouldn't get the carpeting wet. And those looks he gave me!

(I wonder if I ever gave that look to him?)

Yep, time outs are on the horizon.
I AM KIDDING!

Lisa! Lisa! Lisa! :)

I did it!!! I found some help for the weekend. Lisa is a teaching assistant where I work, and graciously agreed to hang out with my dad when I asked her. Today was the first Saturday. It was great! I got to do a little shopping, clean my car, lunch and shop with my daughter, and go to her house for awhile. It was a very nice day! My dad was fine with Lisa (she's been here once before, but he didn't remember) and they watched football together ( not my thing), and seemed to get along well. Hopefully, this will be a weekly thing.

Thank you, Lisa!!!!

I came home refreshed, and enthusiastically made dinner, even tried a new rice side dish, with a little phone help from my college son. :) I didn't get anything done that is on my list, but that doesn't mean I won't. I'll just work it in this week, and not just try to recuperate from the weekend.

Thanks to those who encouraged me. Yeah for me! :)

An admission

I realize I haven't added anything to my blog in over a week. I think there is a reason for that, and the reason is I want to stay true to why I started this thing in the first place. I want to always remember how much I love my dad, and that I want to help him. I want to remember that this is a choice, one that I have willingly chosen, along with the support of my family. I don't want this blog to be a place of my whining and complaining. It's OK for me to identify difficulties, but only after I have come up with a plan, or some type of strategy for dealing with them. aka Marcia's rule.

Anyway, I have been having a hard time lately. I couldn't wait for my support group last night, and once again, I have been given a booster shot, a kick in the butt, support, understanding, suggestions, and hugs. Thank you to them for that.

I admit it. Maybe only for today, but I admit it. This is really difficult! This journey of caring for my dad is really hard! And one of the things that is really hard for me is the isolation that comes along with it. I am home from work on Friday, Saturday, and Sunday. My husband works Friday, Saturday, Sunday. My daughter doesn't live at home, my son is away at college. So basically, it's Dad and me. The three of us do have dinner together, and spend a little time together watching TV in the evenings. I am able to run up to Walgreen's or take a long bath in the evenings. But mostly, it's Dad and me, and I feel as though I have to be at his beck and call (verbal or not) 24/7. All that goes into caring for him is very time consuming, and I admit it, sometimes I just want to grrrrrrrrrrrrr! or maybe even say a few !#%$#>?!##! It's very hard to get my stuff done, in fact, I don't get my stuff done. And being almost alone, sometimes, it's overwhelming. Thank goodness for my cell phone and the free long distance! But still... At the meeting last night, we talked about how difficult it is for others to understand the care giving demands, the loss, the sadness, the isolation. Unless you are there, or have been there, it is impossible to understand it in its entirety. But thank you to those who try. :)

I know, at this very minute, that I need some weekend help. A few hours here and there would be great. So I am going to find that. Soon. And for those of you who know me, make me accountable, because tomorrow, I may say that everything is just fine, I don't need any help, I can handle this the way it is, and blah blah blah. But then again, you may have to accept my polite refusal of help. I can be pretty stubborn at times!

I have a new box of Calgon for the weekend. :)

hugs!

This is my dad and his favorite granddaughter, Dawn (as she tells him!)

I'm trying to get the hang of putting pictures in on this blog. Every once in a while it works.

A pretty good day today!

Research

I feel like I just recovered from the weekend, and here it is almost here again!

Last night, the guys went to bed early, and while I was ironing, I watched a show on PBS about Alzheimer's. Wow. They followed a few families' journeys and it was so sad. But there was also parts about research, and there was a man who did not have AD, who volunteered for a drug test. This drug, which I can't remember the name of, (oh no!), has been successfully used with mice in terms of attaching itself to pieces of the protein Beta Amaloid in the brain. What it did while there...I was kind of confused about. Anyway, with this brave man's sacrifice, they were able to see that it did the same in humans. The scientists were quite excited, and think that there will be some kind of treatment within 5-10 years. Funny thing was, they said that to these families 4 years ago (when the documentary was filmed). We will just all have to pray about this research, and listen out for the findings.

I'm also going to a class next month called Alzheimer's, Memory, and Dementia.

parent/child?

How do you tell your dad to put on his "underwear" aka Depends? He will sometimes use the bathroom, and during my BR check afterwards, I find his underwear in the garbage and none of the two I leave on the tank are gone. It's hard to, in a way, treat your dad like a child. I did go and tell him that I saw he threw his underwear away, and wanted to make sure he had a pair on. "Oh, yes, of course I do". But I knew better.

It's one of those times that I remember, validate don't agitate. I was not going to win the battle by confronting him. There was no way I would put my hands on him and check and say, "no you don't!" So I put a pair on the sink in the bathroom, and another pair on his bed, and waited (and hoped that the mess would be minimal). The next time he went in the BR, I yelled in..."hey, Dad, make sure you put your underwear on. It's sitting on the counter". He said, "OK, I see it". And he did.

We are very lucky that my dad is so easy going. If you knew my dad, he was anything but easy going before this illness. A few times, that dad has come out, but for the most part, I have an easy going, polite, obedient dad. Obedience comes along with the parent/child relationship, I know. And in a way, our roles have been reversed. I know that some could never react to him the way I do. My husband will ask me for the words when a situation arises, and when he says them, he gets the same results that I do. I guess we're kind of sneaky when it comes to handling my dad. Sometimes, waiting 5 minutes and presenting something again works. Other times, I just come right out and tell him what he is going to do. It's amazing to me how he just does it. Of course, as time has gone by, I have gained confidence at handling him. Never in my wildest dreams did I think I would ever shave my dad, but I do. And when I do, he is very passive, very quiet, and isn't anything like I remember him being. When I am finished, he always politely thanks me. I know we are very fortunate he is like he is. I am not ready or willing to let him change for the worst.

Setting it up for success

I grew up in a house with about 900 square feet on the first floor. There was a living room, kitchen, 3 bedrooms and a bathroom. Our house is about 2300 square feet. Yes, it is bigger, but to my dad, it is "so damn big".

Tonight was one of those times that I have to remind myself to do the things that make it easy for my dad. He announced he was going to bed, so I went down the hall and into his room to turn on his lamp. He met me at his door, and I told him I was going to get his toothbrush ready. He went in his room and took off his shoes. I came out of the bathroom and watched him walking back and forth in the hall, into the laundry room, the office, his room, back into the hall. It reminded me of playing pinball. You know how that steel ball bounces off a lever, into a bell, through a flipper, and back off a lever? Looked like my dad tonight. We usually shut all the doors except his room (which has his initials on it), and the bathroom (which has a universal bathroom sign on it). But tonight, the other doors were open, and I guess it was just confusing to him. When he saw me, he said, "I can't figure out where the hell I'm supposed to go".

We have identified several things to help my dad find his way successfully. Now I just have to remember to do them ALL the time!

From heartache to hugs

What to do...
It has been one of those days. Difficulty getting out of bed. Messes. Confusion. Naps. Aching. Messes. Hard time walking. Yelling at me. Naps. Naps.

When these days happen, it is hard. But my heart aches for my dad. Even with the yelling, I can get him out of it with kindness, soft words, a light touch. He did all that I asked today...shower, rolling (in bed), eating/drinking. I guess when that twinkle was in his eyes, or when he winked at me today...that's what makes my heart aches for him the most. I was scratching his back for him, and laughing at his sounds of delight. I gave him a hug and said, "I love you, Dad". He said, "I love you too. Believe me, I do love you." So sweet. I'm so glad he is here.

Cash back for caregiving supplies

FYI - this is a website that gives cash back for care giving supplies. Every little bit helps!

http://www.caregiversmarketplace.com/FrameSetup.asp

Sleeping ZZZZzzzz

Today is one of those days that I can't figure things out. Perhaps, I shouldn't even try to figure these things out, but part of me makes me want to figure them out.

Why is he sleeping so much the last few days? How can he go to bed at 9:00 pm and not get up til 11 am? Of course that doesn't include the bathroom trips, but still, that's a long time. And why, at 3:30 am, were all the lights in the house on and my dad was all dressed, even his shoes were on, and he was sleeping/snoring lying on his bed? How can he get up at 12:00 pm, eat "breakfast", and an hour later be so tired that his eyes are drooping and he crashes on the couch for another 3 hours? Sometimes he says to me, "I'm an old man - I'm so tired". The other day while Dawn and I were sitting in the family room talking, my dad came over and sat next to me. He looked real tired. I asked him if he wanted us to keep talking so we could keep him awake, and he said something like, "no, that's OK". And I'm not kidding, but within 5 seconds his eyes were shut and he was sleeping! How did he do that? Why did he do that?

At 86, I assume that people get tired and sleep more. But it's not normal for him. Is it his blood sugar level? I used to be able to test it in the morning and the evenings, but I can't anymore. I don't think I have been able to do it for about 4 months. It's not that my dad won't let me test it. He is just unable to let me test it. He is always verbally cooperative when I get all the stuff out to do it, he just can't let me. He freaks out...laughs, shakes his arm, pulls away, and yells at me to hurry up. But I can't poke a moving target! So I guess it would be wise to just really watch his diet more carefully and see if that helps. And maybe learn to poke a moving target?

Lesson learned...

Note to self: Always shut the bathroom door when using the toilet. While Smith was in the hall bathroom, it was nice to know that my dad could find the other bathroom when needed. He just wasn't expecting to find me there. And I wasn't expecting to be found! I scared the bejeebers out of him. oops. I'm glad that he forgot about that sight!!!

A new stage?

I'm not really sure if I am over analyzing or not, but I have noticed a new thing. Yesterday, while my dad was sitting in his chair looking like he was going to fall asleep, I went over and started to slide the stool over for him to put his feet on it. I said, here, you want this for your feet? He said, what is it? I said, the stool for your feet. He said, ohhhhhhh....and proceeded to put his feet on it. Then when I was cutting his hair and shaving him, I brought out his razor, and he asked me what's that? I told him it was his razor and he said, my razor? emphasizing the word razor. hmmm.... I know that sometimes, those with AD will have difficulty recognizing familiar things, or knowing what to do with them. Is this happening? I'll keep my eye out for this lovely new thing.

The weekend went well. My dad has been kind of quiet, like he is being introspective, but I know that is not the case. He is enjoying the Olympics, but I think I'll need to have a little more control over that because he (and I) stayed up way too late watching swimming last night. On the positive side, the relay team won. :) Fun to watch for both of us!

smooooooooth days

Things are going well. My dad has readjusted to being at home with us. He is eating well, sleeping well, finding his way around the house, and getting along well with his caregiver. :) He has noticed a few things from his home in FL that I brought back with us. He "never knew" my mother gave that to me. What's your mother's coffee table doing here? It's for you to put your feet up on. ohhhhhhhhh. He has not made the connection that these items were in his home in FL. He has not said anything about the additions in his bedroom. I can't imagine that he hasn't noticed. But even if he has, he probably forgets to mention it to me by the time he leaves his room.

I found a way to get my dad to brush his teeth. When he is going to bed, he always goes into his room and shuts the door. Then he comes back out to use the bathroom. When he opens the bathroom door, I am right there. Here, let me get your toothbrush ready. He can't get out cuz I am blocking him. So I hand it to him, and he brushes his teeth.

Took me long enough to figure that one out.

oh, and his home in Florida is no longer his home. It has been sold already! yeah!!!

A lesson learned

SMILE!
My dad is home.

The transition to Village Oaks was difficult for him. But I'm happy to say, his transition home was a lot easier. He was quite scruffy looking when we went to get him on Tuesday, and he was confused too (more about that later). I believe he knew who I was, but didn't act overly thrilled to see me. He went cooperatively with me, after snacktime of course. But after the ride home, a few hours of sitting around and some talking, and dinner, he was back to himself. He enjoyed watching the Diamondbacks ball game with Tom and me. I don't usually watch more than 5 minutes at a time, but I couldn't leave the room. I had to do my watching, listening, assessing...and enjoying my dad.

Now about the confusion...
This has not happened at our house. Not that he doesn't watch TV. He does. But for some reason, when we went to get him, he was IN the movie. The first thing he said to me was something about how he had fooled everyone. When I asked him whom he had fooled, he beckoned me closer with his finger and whispered, "my mother". Huh? Then on the way home in the car, he said that place was really fun and that he had fooled them all. He said no body knew for sure whether he was a man or a woman, except for that one lady. When I asked who, he said, "Harriet". Another huh? That was the end of that. But the next morning, Tom figured it out. My dad had been watching Mrs. Doubtfire when we arrived. If you haven't seen it, Robin Williams plays a father (also an actor) who misses his children so much after a divorce that he disguises himself as a kindly babysitter and gets hired by his ex to care for the children.

Lesson learned: Be careful about what he watches on TV. Make idle chit chat during the program to keep him with us!

Welcome home, dad!

T minus 18 hours

My dad is coming home tomorrow. yeah! I have really missed him and look forward to his return. But I am also quite anxious about his return. How is he going to be? Is he going to be angry with us? Will he realize how long he has been gone? His caregiver went to see him a few days ago, and he told her that he had only been there a couple of days. OK, sounds good. And it sounded as though he remembered her. That sounds good too. But what will he do when he sees his stuff? Will he notice? Will he just think they have always been here? Will he ask questions? Will I have the right answer? Keep it simple, Marcia. Redirect. Give lots of hugs! Hug myself!

I am going to be cautiously optimistic. Yeah, sounds good.

A cute picture

My sister in law, Karen, went to Harriet's (and dad's) home in Caseville, Michigan a week or so ago. She collected all his stuff and took it home to go through for me. She found this picture and sent it to me. I have never seen it before. It's my dad and mom. It must have been taken around 1952, the year they were married. That would make my dad 30 and my mom 34. I love this picture! Thanks for sending it to me Karen! :)

Lots

Lots to do while my dad is gone, and we're making a dent in it all, but it seems never ending. We went and saw an elder care attorney. Lots to think about. Lots of choices. Lots of decisions to make. Lots more to do.

We're still unpacking boxes. We're still packing boxes for Harriet. We're still cleaning, sorting, arranging, and integrating his things into ours.

6 days til we go pick him up from the Village Oaks. I have not gone to see him, but I have called 3-4 times/week to see how things are going. Reportedly, he is doing OK. He says, "wonderful" when asked how he is doing, is participating in activities, and eating well. Debbie, the nurse, has been very kind in answering my questions and making me feel good about this respite.

Still, I miss him lots!!!

Empty nest!

It will be 2 weeks tomorrow that my dad has been at Village Oaks, and I really miss him! His chair in the living room is empty, there are only 3 at the kitchen table, his bed is staying made :) and the house is really quiet without his laughter!

My friend went and saw him last week. She took this picture and sent it to me while I was in Florida. Thanks, Jean!

The trip

Not really sure how to start tonight. So many things are on my mind. Tom and I made it to FL. We cleaned, sorted, packed, pitched, donated, cleaned, fixed things, and did I mention cleaned? It was quite the experience. In a way, I felt like I was disassembling my dad's life. Kind of a sad thing, but we made it through the experience. Tom is driving back with a load of stuff.

I did learn a few things.
1. If I ever doubted my decision to have my dad come live with us, I no longer have that doubt.
2. I learned that my dad and his wife had a good life there, full of activities and friends...but there was definitely a change in all that over the past few years that many had noticed.
3. I learned that I can relax! :)
4. Some day, someone will be going through my things, my treasures, and they will be cleaning, sorting, packing, pitching, donating, and fixing things.

I went to my support group tonight. :) I wanted some words of wisdom about how to integrate my dad's things into my home. In a nutshell, I am going to just fit them in. And if my dad says anything, short answers are best. If he does ask about his home, one woman suggested that I just say, "it's still there". Great response! Short and sweet. I can't say that my concerns about his reactions are gone, but I do feel better about it. I am told there is a possibility that he may not even notice his things. That would be a good thing...but a sad thing too.

Last but not least, my dad is still at Village Oaks, and I really miss him! My daughter has visited him twice, even took her dog over once. She said all the residents really enjoyed their visit. And my good friend visited him too - even sent me a picture of him on the phone while I was in FL. I have this feeling inside that my dad is going to be really mad at me for having him go there. I'll work on that...because I know I'm wrong!

The day of, the day before

Whew. It's done. We took my dad over to Village Oaks today. When we have brought up the "senior apartment" in conversation, his responses have varied but were mostly agreeable. This morning, his response was not agreeable. "I'm not going there. I'm staying here, or just send me home!" But he did get up when I awakened him, took a shower, and came for breakfast happy as a lark. It's a beautiful day! After he ate, he and I played some gin rummy, then about 100 games of tic tac toe on his dry erase board (how does he win so much????). I had enlisted my husband to come in and say it was time to go, and that triggered the explanation again. But he moved along with us to the car, and over to the center.

He went in happily, met some of the staff and was his usual cordial self shaking hands and cracking jokes. We walked around his area, found his room and went inside. So I'm going to be staying here? Yes, we'll come get you when we get back. Where are you going? And so we did that whole thing again. Well, this is quite a nice apartment!

We went down to the dining area, as we planned to come in time for lunch. Smart idea, huh? I saw a man sitting alone and asked if we could join him. I introduced myself and he said his name was Sam. A small quiet man...and in my head I'm wondering about his story, his family, his life. My dad and Sam shook hands, and I started some small talk about the food, the Diamondbacks (Sam said he only watched it if he bet on the game!). Lunch was served, and as the two men started eating their chicken, stuffing, rice, and corn, I gave my dad a hug and said I'd see him when we got back. OK, sweetie, see you then.

And that was that. Debbie, the nurse, gave me her card and said to call any time, every day if I wanted, to check on him. I'll do that. :) I'm hoping I won't do it everyday. It was kind of like dropping your child off at a new school. I was sad inside, but I know that he will be OK. I can't wait to hear if he participates in karaoke!

We will be leaving in the morning for FL. Now I can start thinking about packing for that trip. I couldn't even think about it before. Procrastination is my name. Hey, it works! :)

First time is the hardest!

Last night at dinner, we brought it up. We're going to be out of town (actually, we told my dad that we are going to help Tom's sister move) and while we are gone, we found a place for you to stay.

D - you don't have to do that. I'll be fine.
M - You'll have your own room, meals (probably better than my cooking), and we'll come get you when we get back.
D - I'll just go - - -( you can see his mind trying to find something) back where I stayed before.
M - ok, that'll be fine. We leave on Monday, and we'll take you over for lunch that day.
D - I'll go sometime during the week.
M - ok, that'll work.

How did we do? Tom actually started the conversation because all through the day when I thought of it, I started to tear up. After the start, I think it went well. To the naked eye, with what I wrote, it may not look like it. But the subject was brought up, the sky didn't fall down, and now we can bring it up again, hoping for the same type of response. yeah!!!

By the way, my dad knew me today. :)

first time ever...

I'm going to begin this with a big wow.
10 pm - just watched a show with my dad.

D - I'm going to bed. He gets up, picks up his shoes, and heads down the hall.
M- Night, dad.
D - come on.
M - I'll be going in a few minutes.

I hear him go use the bathroom, and then he walks back into the living room, turns and walks into the kitchen, through the family room, and back out to the living room.

M - Looking for something?
D - I'm trying to figure out where to go.
M - I'm sorry, I forgot to turn on your lamp in your room. So I walk down the hall in front of him, go into his room, and turn on the lamp. I turn around and see him standing there.
D - Not this room. I've been here before. Where's our room? This bed isn't big enough for us both.
M - I walk over and wrap my arms around him. Dad, it's Marcia, your daughter - This is your room. I sleep in the other room.
D - Fine, fine, fine. Turn off my light.

First time that has ever happened. I know he didn't know who I was, even when I told him. He seemed kind of embarrassed in a way and wanted me to go away.

He has had a different kind of a week. The caregiver was not here. He has spent most of the days with my husband, who did a great job caring for him. But that was a big change for him, and perhaps, somehow, led to tonight. Changes can bring about confusion. Here's hoping that tomorrow morning will bring me back to him. :)

Man, I hate this disease.

Procrastination

5 days until my dad goes to the care center. No, we haven't told him yet. I've gotten a little bit ready for the transition, but there is a lot more to do, and probably even more that I haven't even thought about yet.
6 days until we leave for Florida to pack up his home and put it on the market. No, we're NOT going to tell him about that. I have not even started to get ready for the trip, except for labeling a folder "Florida" and putting some important papers in it that I need to take.

I wonder if I just don't prepare anymore if the time will go slower? Or maybe the whole ordeal will not even happen. Maybe I'll wake up from this journey.

Realistically, I know it is going to happen and I am looking forward to the respite. It's been almost 10 months now, and I know I need a vacation. This trip is a break, but it's really not a vacation. But getting away and not having to do the care giving will be wonderful. I'll be worried about him, and yes, I will call the center, but I will be okay. I'm hoping that we will work like maniacs for a few days, and then take a day and maybe go to the beach! yeah! I'm looking forward to seeing many of my mom's things, and delight in the fact that I will be able to bring them home with me. Those thoughts make me want to go pack, get ready, and go! Naaa...tomorrow's another day. And besides, I still have more than 5 days to get it all together! I always work best under a deadline anyway. :)

Fear and apathy

One of the things I first learned in my support group from our facilitator was that Alzheimer's patients operate out of fear. Their world doesn't seem the same to them. Things look, feel, and smell differently. At times, their world may not be ours, so confronting them about the differences can bring agitation, verbal aggression, not to mention confusion.

In my dad's case, I think these changes bring fear and apathy.
* I gave my dad a pedicure yesterday. He had his feet in my foot bath, and when I turned it on, you would have thought he got an electric shot, or worse yet, been shot! It scared the bejeebers out of him.
* M - "Dad, we're all going over to Dawn's. Here's your water."
D - "Why do I want to go over there?"
M - "We're going to see her new wood floors and her new big screen TV."
D - "Nah, I'll stay here. I've seen wood floors before and I'll watch this TV."
* Hey, dad - come on in the pool with me!
D - "Nah, I'll stay inside."

I can usually come up with a zillion of these things, but right now, that's all I can think of to type. I guess I just wanted to say that my dad doesn't want to go anywhere, and is frightened by things that typically would never have frightened him. (You should see him jump if I have to wake him up!)

Wii

My son got a Wii game and we tried it out on the big tv this evening. My dad watched us bowl, and then we made a player with his face (so funny), and he played a game of tennis. I was quite impressed that he tried it. I know that I had a hard time with the controls with bowling and with tennis. I really didn't expect anything better from him. But he did try it. For him, a used to be very good tennis player, losing was not an option. "I quit."

He's all signed up at the center. He'll be going on the 30th of June for 30 days. And no, I haven't told him yet. That will come later...

Re-energized!

I went to my support group last night. It was just about the best meeting ever. Topics that were discussed appeared to be just for me. Nice to know that others are struggling with the finance end of this journey. Not that I want them to struggle, but knowing that I am not alone is nice. Seems that there is conflicting information out there and I am not the only one coming across it.

It was nice to hear stories that were touching and humorous. I really try to focus on these in my life and on my blog because they bring smiles and laughter, which is a relief. This disease really stinks, and I could become focused on the time that is needed for care, the financial and insurance whoas, the messes, and the loss - but I consciously try not to do that. It's all about acceptance for me. Accepting that Alzheimer's entails time, money, insurance, messes, loss and much more - it's just the way it is. For the most part, most of the time, I do accept it. Figuring out ways to handle it is the challenge. I feel that I have done a pretty good job of that. Of course, new stuff comes along and with that comes the emotional part of it all. Anyway, it was a good meeting and helped me to, once again, know that I am not alone.

One more thing - the group facilitator is great. She shares her journey of care giving for loved ones with us. She has written a book about it, and is in the process of writing another. I have read her first book, and truly enjoyed it and learned from it. For some reason, the powers that be, have let her know that this support group is not the place to be talking about her book. I never felt pressured to buy her book, and I know for a fact that she wasn't using this forum to sell her book. She is truly a compassionate woman who wants to share her story, and help others by giving information, insight, and support. So when I get her book back from my daughter, I will put all the information about her book on my blog. It is a book that really helped me and I think it will help others who share my journey.

This is worth repeating

Prayer for those Living with Alzheimer's

O God of love, hear our prayer
for all who suffer from Alzheimer's.
In the days of changing memory,
be with them in their fears.
In the days when memory has gone,
bless their families who suffer.
Surround them with tender love
from family, friend, and stranger.
Grant them peace in their hearts,
a secure home environment, and dignity in their lives.
May each day bring a blessing,
hope and greater love. Amen.

- Vienna Cobb Anderson

A Reminder

No matter what anyone thinks, this care giving does not come automatically for me. I admit that I do have patience, and that I can typically get my dad to do anything I want him to do. I keep up on the appointments, hygiene, medications, etc. But there are times I want to slap myself up side the head and say, "haven't you learned that by now?"

A few weeks ago, one of my dad's friends from Michigan died. I told him, and he had a genuine reaction of sadness, and we spoke of what a lovely woman she was. Well, yesterday, I found her obituary online, and I showed my dad, I guess because it had such a nice picture of her. It was like I just told him about her death for the first time. His hands to his chest, mouth wide open, "oh no! I can't believe it" just as he did when I told him a few weeks ago. Again, a genuine reaction of sadness. I felt terrible about making him relive that moment again.

It was a good reminder to me that he doesn't remember things. Not that I need a reminder...but maybe I do once in a while. He doesn't remember my mother being sick (5 year illness). Can't remember a lot of things. But a good thing today and yesterday...we did a crossword puzzle together. He has done them for years, and has always been good at them. He comes up with answers that I would NEVER come up with. I'm one that always goes to the back of the book to cheat. Not him. He doesn't do them the way he used to do them, but together, we completed two this weekend. A good thing. :)

A good day

When I left for work this morning, my dad was still sleeping. When I got home this afternoon, he was napping. He got up a little after 5, about a half hour before dinner. He looked like he was sleep walking when he came out into the kitchen. His eyes were slits, and those lovely bags we all get under our eyes, were very prominent. His one eye was tearing (I've seen this before). I handed him a tissue and asked if he was crying because he missed me so much today. His reply, "oh, were you gone?" Funny, Dad. I asked him if he wanted some coffee, and he told me that he would just eat breakfast. I told him it was nearing 5:30 and we'd be having dinner. He had this look on his face like, what?????? dinner???????? "what the hell time is it?" "Almost dinner time, I said". "OK, let me know when it is ready."

After dinner, we did a manicure (he was digging in my garden again). Then we played gin rummy, and he did a great job shuffling, dealing, and playing! Yeah! Even beat me 109 to zero one game. I got out the Trouble game and we played that twice. He beat me both times. :) A little help had to be given for rules throughout the game, but a lot less help had to be given when he counted his moves out than the last time we played. I have to get that game out more often. It brings out my competitive dad.

Last, but not least, I made an appointment with an elder care attorney. The app't isn't until the middle of July, plenty of time to fill out the TWENTY PAGE questionnaire and gather all the documents that need to be taken. I'll have to do a lot of searching and reading to fill it all out, but I'll give it my best shot.

I never know how a day/night will be. Today.... a good day. :)

I'm confused, but not trying to figure it out!

I'm telling you, all you have to do is imagine the worst case scenario for a situation. Just imagine all that can go wrong. Think of all the problems you will encounter. Anticipate the worst. Roll play in your head. Talk to a dear friend for support and strength. And then what happens? Nothing. The doctor just signs the papers. No problems. He doesn't act like it is any big deal at all. In and out of there...lickity split. I met Dr. G's twin today. I liked him. :)

Tummy problem

When I took my dad to the doctor a week ago Friday, I had anticipated getting all the paperwork filled out for his July stay at a center. I know I mentioned in an earlier posting that the appointment didn't go as I had planned and I encountered "bumps in the road", as I so cleverly put it. Last week, I took my dad to have a TB test on Tuesday, then back to the office on Thursday to have it checked. (It's OK) Tomorrow, I have an appointment scheduled for him for a physical, and hopefully the time (if his highness, Dr. G allows it) to fill out the paperwork.

I am sitting at my desk looking over the papers. I have a knot in my stomach. I feel like I am going to the Principal's office - like I did something wrong. In my head, I am hearing Dr. G's comments, questions, etc. and trying to find some good answers and comebacks for him. There is a form called "Physician's Authorization for Non-licensed Caregivers to Administer Medications and Provide Treatment". It has listed that this non licensed caregiver has to have:
1. completed the state of AZ approved training, or
2. met the expectations of the rules as outlined in State Regulation R-9-10-722, and
3. have skills verified by a licensed nurse.

OK, that says that someone is going to give him his pills. They have some kind of training, or at least a procedure for administering the right drug to the right patient. They put the pills in a cup, carry them to my dad, give them to him with a glass of water. Wait...make sure he takes them. duh. The drugs are listed on another page with the name, dosage, when it should be given, and diagnosis identified (for drug use). Simple? Nope. Dr. G says he won't sign it. He doesn't know these people or this place, and won't be responsible for it. huh? Something to do with liability? Does he only approve of certain care centers? I can't believe he doesn't have any patients in a center, and I don't believe that this particular place is the only one that requires that paper. Heck, I'll sign it. I am my dad's power of attorney for health care. Why does the doctor have to sign it anyway? He's gonna give me heck about it, I know. Center "must have the permission of each resident's Primary Care Provider for non-licensed Caregivers to administer medications". I called the center and told them about my last encounter. They were really nice about it, and someone went over to his office to talk with him. But they didn't have an appointment, so he wouldn't/couldn't talk with them. They did leave some information about their center at the desk. Did he read it? I wonder. They told me that they would go back (with an appointment next time) and speak with him directly if I have a problem with the paper work. I am not looking forward to seeing him again. I cried like a baby last time. I guess I have to start my mantra...I am strong! I am a rock! I can do this! (I hope.)

three - five - eleven - fifteen

This morning, my dad and I were sitting at the table eating breakfast together. I mentioned it was Memorial Day and asked him if he kept in touch with any of his air force buddies. "No". He then spontaneously said, "I wanted to be a pilot in the worst way". I asked him if he was good at it, and he said, "oh, yes, I was really good, but they had so many guys that wanted the same thing that I did, and they only took the best. That wasn't me." I asked him how long he was in the air force. He quickly said, "3 years, 5 months, 11 days, 15 minutes". I said...what???? He repeated, "3 years, 5 months, 11 days, 15 minutes. Some things you never forget".

I guess not! :)

bumps on the road

It's been a long week. A busy week. Graduation events, visiting in laws (yeah!), graduation itself, party yesterday...and my dad did well. He stayed home with the care giver the evening of graduation. We all got to go out for dinner and then to the ceremony. I made the right decision not to have my dad go with us. I had expected the event to be outside in the football stadium for 2-3 hours in the heat. I even told him about it, and he said he didn't want to go. It ended up being inside as it poured outside, making 4 inch puddles for us to wade through on the way back to the car. Definitely made the right decision on that one. He was fine at the party, even changed his clothing without cuing when he needed to do that. yeah! :) He was quite formal and cordial with the guests, rising each time to shake their hand as he was introduced. That part of my dad has NOT changed.

We went to the doctor on Friday late morning, my plans being to have all the paperwork filled out for the care center in July. I was disappointed with the outcome of the appointment, in fact, I should say I was quite frustrated because I started to cry. I hate that! Anyway, we have to go Tuesday and Thursday for blood work and a TB test, then back the next Monday for a physical and to have the Doctor fill out the stuff he needs to fill out. He is a by the book guy - a good thing- but obviously time consuming for me. I need to remember that things aren't always going to go smoothly, and I can only do what I can do when I can do it!!!!!! Bumps on the road - what a ride.

The GOOD and the TRUTH

The GOOD
* Dad enjoyed a good night's sleep, got up later than usual this morning, and had a good breakfast.
* He basked in the sun and took a nap on his swing.
* We played a game of checkers and he beat me.
* He got a haircut, shave, and beard/mustache trim, and when he looked in the mirror, he said, "I look good!"
* We watched some old reruns of Bonanza and got a chuckle out of them.
* I had been thinking about a couple that my dad and mom had been friends with, and whom I saw in Michigan on my trip there prior to bringing him back to Arizona with me. So I called them today, and they seemed genuinely happy to hear from me, as they had wondered where he was. We had a nice talk, they gave me some good suggestions about the FL place, and plan to write to my dad. That made me feel so good. My dad has always been a very social guy, and the last few years, and since his move here...well, it seems as though everyone has forgotten about him. Not putting any blame on the situation...it just is what it is. Anyway, I was just glad I called them. :)
* We went to an awards ceremony at the high school tonight and I had a friend come and stay with my dad. All went well.

The TRUTH
Even though I put a deposit down on a place for my dad to stay in the month of July, I have not been feeling definite, about it. The $$$ is ridiculous, and even though the place is beautiful, I was still undecided. I went to another place on Monday. I had been there before, in fact, it was the first place I went to and I had liked it. Anyway, I went there and had a tour again and talked with, not sure of her title, but a nice woman. The assisted living part of it was nice. Nice rooms, activities, nice dining area, nice outside area...and the price is almost half of the other center. Then I went into the "special unit". Nice rooms, more staff, activities, a pathetic outside area that is secured. It was "down" time and the residents were mostly sitting in chairs or on the couches sleeping. It broke my heart and I hated it. My dad doesn't fit here. No way. I won't put him here. But somehow, I found myself setting up a time for them to come to my home and meet my dad, and assess which was the appropriate unit for him. I thought I already knew. The nurse came today, talked with me while my dad was outside, then met him, had a casual conversation with him, asked him all the self care things she had asked me, and did a "mini mental" test to assess his cognitive skills.

Truths
* To my surprise, my dad told her that he had been here 8 months.
* He lives in Clawson Michigan, in Oakland county, just outside of Detroit. (He moved from there in 1980)
* He did not know the year, although repeated 19... over and over.
* The month was January.
* He didn't know the date, but it was Sunday.
* The season was summer.
* He identified objects like a pen, magazine, and told their purposes.
* He repeated apple, nickel, Chicago after told to remember them. He repeated them twice after the nurse. She asked him another question, then asked him to repeat the three words. He couldn't do it. When prompted with "one is a fruit", he said banana. "One is a coin", he said nickel. "One is a city", he said Detroit.
* He told her that he didn't have any trouble eating (which is true)
* He said he dresses himself. When asked if he changes his clothes every day, he said yes.
* He responded that he brushes his teeth 2-3 times/day, doesn't have any problems taking a shower a few times/week, and never has "accidents".
* When asked to grasp a piece of paper she was holding with his right hand and fold it in half, he did it.
* When asked to use a pencil and copy two intersecting geometric shapes, he did it, however, it didn't really look much like the original.

I was told that he should be in the "special unit". He requires too much prompting to live in the assisted living area. He requires prompting to participate in activities and meals (otherwise, I know he wouldn't do anything). For safety, his bathroom would need to be regularly checked and cleaned. His hygiene needs to be monitored, and cued. The nurse told me that she believes that he would not be successful living in the assisted living area. He would be unable to socialize meaningfully with the others. She predicted that he would realize this, and would tend to isolate himself.

Ugly truths, and I know it.

Adjectives of the day

Overwhelmed, confused, impatient, disorganized, tired, behind, sad, overwhelmed, snappy, irritated, overwhelmed, overwhelmed, overwhelmed.

And on top of that, my glasses cracked today - just like a windshield.

Calgon, take me away!!!!!

I did it.

It's been on my mind so much lately. I've been procrastinating, then worrying that I may be too late, but still procrastinating. It's not every day that you make plans to dismantle a parent's life. I would think it would be like "taking care of their affairs" after they die, but he's alive. ( And I am so glad about that.)

Step one is done. Sorta. I put down a deposit at an assisted living center for a month long residency for my dad. All the paperwork is not done. Heck, I don't even know the bottom figure, but at least the process has been started. And confirmed with the deposit. And when I left that place, I felt much better.

I now have a time frame that we can use to go to Florida, pack his things, get rid of things, clean, put his place up for sale, get home, unpack, sort, store, put in the house, and on and on. The next steps, paperwork, paperwork, paperwork. Two people from the center will come and meet my dad and assess in which area he should stay. I have my opinion about that, but I do have to be honest. He did take off one day and I didn't know where he was for 15 minutes - the longest, most frantic minutes I had experienced in a long time. And there was the time that I was "cooking" aka "burning" and when I came out from the other end of the house where I was ironing, the kitchen, living room, and family room were thick in smoke. Scary. Where was my dad? Just sitting in his chair watching TV, oblivious to it all. Double Scary.

Anyway, I will leave it up to them to decide. Yes, when I left the place, I felt better. And yes, it was so hard to do. And yes, when I left that place and got in my car, I cried.

she's too good to be true!

I went to put a load in the dryer. I couldn't believe my eyes! The lint trap was clean! I thought I was only one of maybe two people? who think it is important to keep that thing clean. She cleaned the lint trap! And maybe better than I do.

I don't need much to make me happy. :)

Stuff

It has been 8 months since my dad came to live with us. 8 MONTHS! He has no idea. It's not like I hide the calendars. They are all over the place. It's not like we never talk about what the month is, or the day, or the weather, or activities that are coming up that day...we just talk in the moment, and that is where he is. He's having a good old time right now watching the Diamondbacks on TV. Between him and Tom, it's loud out there!

I've started the work towards having my dad stay somewhere for a month during the summer. My first choice doesn't take any temporary residents in the area where he would need to be. Darn. My next choice is close to our house, like a mile and a half, and I am playing phone tag with the powers that be. I better keep playing phone tag too. It's not that far away from July and I certainly don't want to hear, "we are all filled up." So on my list to do...call Sunrise Senior Living center every day until I get hold of whoever it is I'm supposed to get hold of!

The caregiver is working out very nicely! She is very conscientious and really wants to do well. And she is. She continues to engage my dad in games, talking, and they even went for a walk yesterday. Yeah! She has done my towels, dishes, floors, and I came home yesterday to find all the laundry done. Amazing! :) And - my daughter's dogs are here visiting for a few days and she really seemed to enjoy them. I'm so glad! My dad just loves them. He pets them and yells at them and talks sweetly to them too "oh yes, you are a good dog. oh yes, you are. I love you too but you have to stop licking me!"

The warmer weather has started my dad scratching again. Again and more. He gets these open sores from his scratches. When I get my box of fixin's for it, he says, "I didn't even know that was there!" (the sore) So I clean and bandage. Sometimes he has bandages on his head, neck, arms, ankles...and then I have to be sure to get those clothes away from him (we haven't been fast enough the last 3 days and he has worn the same outfit) as they are yucky!!! After the bandages, we get out the manacure kit and clean under his nails (he does this by himself). I trimmed his nails tonight. I must not be too careful, but I do try to be, because he jumps and yells like I am trying to cut off his fingers! Tomorrow night...wish me luck on the toenails. That is always fun!

he's baaaaaaaaack!

Last night, I got a good swift kick in the butt. My stern, obstinate, opinionated, strong willed dad was at my house. It kind of shocked me, and I had to retreat to gather myself. You see, he got up from watching the ball game to use the bathroom, and then went into his room. Lights off, quiet...
M - Dad, are you in bed for the night?
D - yes
M- I have your pills for you.
D - What pills?
M - Your night pills - as I went in to give them to him. He sat up and I noticed he had on a pair of boxers, the only pair he has.
M - Do you have underwear on under your shorts? (aka depends)
D - No
M - You have to put these on under your shorts ( as I hand them to him)
D - I do NOT have to put those on. (He lays back down and rolls to his side toward the wall.)

This is when I left his room. What the heck? Deep breath.

M - Dad, you have to put these on.
D - I do NOT have to put these on.
M - Trust me dad, you have to. You wear them every day and every night to bed.
D - I do NOT wear them. Why do you want me to wear them?
M - Sometimes in the night, you leak.
D - I do NOT leak. Turn my light off.
M - No. You can turn off your light after you put these on.
D - fine fine fine fine fine

I left the room. Tears - I am the worst daughter in the world. I can't even get him to do this simple thing. I stink at this. What was I supposed to do? Hog tie him and put them on him? All I could think of was, I am going to have a huge mess in the morning. I don't have time for that in the morning! I went to bed about 9:45 wanting to just forget this incident, but my mind was racing and I couldn't sleep. About 12, I got up and went and laid on the couch...I guess I fell asleep because at 3:15 am I hear the pitter patter of daddy feet. D -Where's the light? M -whatcha doing up so early? D - It's not early, it's time to get up. M -It's 3:15 am! D -For crying out loud... I thought it was a lot later than that! He did go back to bed. I did fall back asleep. There were no extra messes in the morning. I guess I worry too much.

And today was a good day. He's been getting up earlier and earlier this past week, so I put black cardboard on his windows behind his blinds. It is really dark in there! The AZ sun won't wake him next time!

The new caregiver started on Monday. She seems very willing to learn and appears to be a genuinely nice woman. She gets brownie points for getting my dad to play some games... checkers, cards, connect four, jenga. Hope it continues to be a good thing for us all.