Is it Fair?

I had a friend ask me if I thought I was being fair to Daddy by keeping him at my house.   It really raised a lot of questions in my mind.  I know it’s not fair that he isn’t living at HIS home - but nothing I can do about that.   Is it fair that I haven’t allowed him to go to a nursing home?  I don’t know.  I guess I need to pro and con it - think of it non selfishly. 

Pros  - For him:  Activities and people around him all the time.
                               3 square meals a day
                               immediate medical attention if he needs it
Pros - For us:      Freedom to do as we need to do
                              Less stress and worry
                              I’ll be able to help Mom more with her problems.

Cons - For him:   Strange place, strange people.
                               ‘locked up’ when used to freedom to walk and go outside.
                                He’s not sick
Cons: For us - Mom’s income cut by 2/3rds

I need to think about more pros and cons. There are surely more than this.
                         
            
           

I want to go home Part Two

I seriously may lose my mind.  Seriously.  How can someone who can’t remember 5 minutes to the next be so horribly homesick.  I can explain and explain about why he is here, and how long we’ll be here and his constant refraint is “I want to go home”.  I am upset and crying because he is.  It’s making me angry, because I feel guilty I guess, that I can’t fix it for him and make him happy.  I try to take him somewhere every day and keep him occupied, but my business is suffering because I have to cater and worry about him 24/7.  I’m afraid he’ll take off in the middle of the night.  I won’t be able to sleep tonight for sure.  I’m going to put a chair in front of the door when I go to bed.  I look at him and he has this frowny unhappy face.  He keeps rubbing his face and beating his fists on his legs.  He gets up and sits back down.  I have to quit being angry.  I know he can’t help it.  He hasn’t been able to live ‘at home’ for 2 years because I’ve had him living with me.  I even told him Mom would put him in a nursing home if he stays with her, and he said, “fine put me in a nursing home”.  

If I make it the rest of the week, I will be surprised.  God should know by now how much I can take, and I was there last Thursday.  This combined with being apart from my husband while he goes through his cancer treatments, losing Rock’s grandma last week, and not being able to work because of taking care of him has cracked me right down the middle and the crack is getting wider and wider. 
I’m not sure I even want to be strong anymore.
Pity party time - bring your own Kleenex.

Away from home

I may very well lose my mind too.  7 hour road trip to arkansas.   Dad didn’t use a restroom all the way down.  When we got there he thought we were just across town and wanted to know when we were going home.  He thought we had come here to work and told Jim “I can’t do much, but I’ll do what I can.”  He did eventually settle down and went to bed early. 

 
Jim left the next day to start his radiation.  I packed up Dad and went 30 miles to the ‘city’.  We had a nice lunch and then went to super WalMart.  30 miles home.  “Who lives here?” “When are they coming home” “Where did the guys go”.  He sits in the chair beside the table where my modem sits.  The flashing lights are driving him crazy.  I have to keep telling him to leave it alone.  He wandered around picking up papers and looking at things.  I asked him if he was looking for something, and he told me he was trying to find out who lived here.   When we go outside - Who’s car is that - who’s boat, etc etc.  (We’re in the middle of 22 acres)
It’s now 6:22 pm, and I know he wants to go to bed.  It’s a 2 room cabin.  If he goes to bed (couch) - that means I have to go to the bedroom.  The dogs will have to be in way way way too early.   I’m going to have to handle this very carefully.  He’s so mixed up.   well, he does remember I told him he was getting a haircut tomorrow.  Only 9 more days down here until the 7 hour trip home.  

Labor Day

Woke up today, as usual, to see Dad sitting in the recliner across from me.   I went and fixed coffee and breakfast and called him to the table.  He couldn’t get up from the chair.   I helped him get up, but then he couldn’t walk.  He was dragging his right leg as if it were dead.   I checked his face and arm, and there didn’t seem to be anything changed with them, it was just his leg.   I helped him get to the table and we had breakfast.  He kept trying to walk by himself, because of course he would forget that he couldn’t.   After a decent hour (all this happened around 5 am), I called my neighbor to see if she had a walker I could borrow, and went down and got it.  
I was in a bit of a panic, I didn’t know if he had had another stroke, or what had happened.  He was suppose to go with me to Arkansas tomorrow to stay at the cabin while Jim started his radiation.  Mom was at the Labor Day parade with her friends, and I didn’t want to bother and worry her until I knew what was going on, so I decided to take him to the doctor in Pana (where she lives).   They xrayed and catscanned him, and seems to concentrate way too much on the fact that his ankle was swelled a little.  He hadn’t fallen - he just woke up broke!   They could tell by the catscan that he hadn’t had another stroke, and of course the xrays didn’t show anything.  Doctor wrote me a prescription for a wheel chair and told me to give him tylenol and sent me home.  I called Mom told her what was going on and reassured her that she wouldn’t have to take care of him, I was still taking him to Arkansas with me.
He fell 2 more times that day, despite me being there.  I would have to physically pick him up again. 
We got up at 4 am Tuesday and took off for Arkansas, there was no other choice, I had to be there for Jim.  I was in a bit of a panic about bathroom breaks etc on the 360, 7 hour trip, but he didn’t go until we got there.   He still stumbled, and fell once (right on his butt).   I’m going to take him to his regular doctor when we get home next week.  (They postponed Jim’s treatments until Sept 16).

Could you be a caregiver?

Everyone thinks about it at one time or another. What will you do if it comes to the point that your parent cannot take care of themselves? This is the ultimate question when it comes to the reversal of roles. You may think of it as your duty. After all, your mother or father did not have to take care of you when you were a helpless infant. But they did because they love you. Love has a tremendous amount of  influence on the things you do.

Before you make up your mind if you are going to be able to do this, you should be aware of a few things that will make the difference in whether you can handle it or not.

1) You cannot do everything by yourself. If the parent you are caring for is diagnosed with Alzheimer’s, in the later stages they are going to require watching 24/7. They can be likened to a child. All you have to do is turn your head and they can be gone. Enlist help from somewhere because this is impossible for you to do. You will do nothing more than exhaust yourself to the point that you cannot care for them at all.

2) Do not feel guilty for taking a few hours off from time to time. Guilt is hard to handle. You must prepare yourself for the fact that you will need a little bit of time for yourself. They will be fine with someone else for a couple of hours. Remember the first time you left your child with someone for a much needed night out? This is the same thing. You are not superman or woman and you are not invincible.

3) You must be patient. Your mother or father is not doing anything to irritate you on purpose. They may be slow or they may not remember but it is not because they do not want to; it is because they cannot. This is one of the reasons you need a break. If you are short-tempered you will regret it later.

4) Do not let your feelings get in the way of your better judgment. No, they may not want to take their medicine and they may have a adult version of a temper tantrum. You cannot give in and just let it go. They must be made to understand that the medicine is for their benefit and it must be taken.

5) Along the way expect a little grouchiness. People who are sick tend to be a little more short-tempered than those who are not. It is more of feeling of being helpless because of the problems they are having. Their body has failed them and they are angry.

The worst thing about caring for someone who is ill or has a disease that will get progressively worse is worrying about whether they are suffering. This can stress you to the point that you really do not know where to turn. Talk to their doctor and yours and let them know the situation. They may have some helpful hints that can get you through this.

Most of all, be patient, understanding, kind, and let them know everyday that you love them. If you decide to do this, that is the least you can do for the parents who have loved you for so many years.

Balancing Act

Since my husband’s cancer diagnosis in June - it’s become quite a balancing act for me.  I live in Illinois with my Dad, and my husband is in Arkansas at our retirement home.  I am so torn between the two places.  I know my place is with my husband while he goes through the treatments and appointments…but it’s quite a deal making it happen.  Mom isn’t all that great mentally, she’s slipping too - but she’s stepped up to help all she can.  I have a good friend, Gail, that has really come through for me.  She’s actually going to take off work to help me so that I can be with him as the radiation wears him out. 

 I’ll probably bring Dad to Arkansas with me part of the time.  I have no idea how that will work out, a completely different place - no cats to feed - a big dog that might jump on him - just lots of differences.  There is no way to prepare him for it, I’ll just have to jump in and see what happens.

On a good note - brother Dennis visited today with Mom and Dad at my house.  He offered to do whatever I might need done around the place while he was there.  I took him up on the offer and had him fix the satellite tv.  I know they really enjoyed the visit. 

I want to go home

This week has been heartbreaking.  Daddy seems to be quite clear in the mornings.  Breakfast, then his walk…but the last 3 mornings when he comes back from his walk, his observation is the same “I want to go home …and i mean to stay.”  How do I explain this to him - how do I make it ok.  He can’t go home, she can’t/won’t take care of him.  She says nursing home.
I think I’m doing the right thing - but he’s unhappy.  I don’t know how to make him happy.  He said “So I have to suffer.”

He’s right - he should be able to go home.  He worked all those years to buy that house.  His pension pays for it’s upkeep even now.  Instead, he has to sit unhappily at my house, taking his walks and occasional outings with me, and being bored.  There isn’t much he could actually do, although he would be willing to do anything i would ask of him.  I wish he could ride a mower - he needs that sense of helping out, doing his part I think.  Unfortunately, his thought processes don’t allow him to do more than maybe 2 things in sequence. 

I talked to my oldest brother about it today, I’m heartbroken for Daddy, and just don’t know how to ‘fix’ it.  I don’t think I can fix it - just going to have to try to keep talking to him, giving hugs, making him know *I* want him and find ways to keep him busy occupied. (easier said than done).   Big brother just offered that maybe tomorrow would be another day and he wouldn’t remember it then.  I thought that too, but this isn’t going away.

I wonder if he thinks if he goes home everything will be like it used to be.  He’ll think better, walk better, talk better….
I guess I seriously need to talk to Mom about this.  He will be home more in the next couple months, maybe they’ll work things out so that he can stay there.  She doesn’t have to ‘give up her life’ - she only has to alter it a little .. after all when we marry we pledge - in sickness and in health.  I found ways to make my life work with him here.  Just a little less me, and a little more him is all.

In the middle of the night

Dad gets up in the middle of the night - and is frantically trying to find or do something.  Last night he was looking for the ’shut off valve’ on his bed.   The time before he was going up and down the door frame in the bathroom and looking for some sort of wiring.   I think maybe he’s dreaming and wakes up and thinks the dream was real.   It’s quite frustrating while it’s going on as there is no reasoning with him at all.   You can even go along with him and try to help him do or find whatever the episode is about - but I haven’t found the right solution  yet.  

This morning when he got up  he said “I am really lost”.   

Family Visit

My oldest brother, David, came to visit in October.  He stayed a week.   The highlight of his visit for me was that I had him clip Dad’s toenails!  I’m still not sure he understands what it is to take care of him day after day.  Dad was pretty quiet while Dave was here - watched ballgames with him and ‘guy’ movies.  They spent one morning alone when I had something I had to do (can’t even remember what).   Mom was here with us for 4 days too.  (David slept in the camper)

I asked David if he’d take Daddy home with him for a couple weeks.  I told him I’d come out and pick him up, but he just didn’t see how he could do that.  He has work (self employed - takes photos for loan and insurance companies) and then there are his religious obligations as well.   His wife is also self employed, and he has 4 grown children in the area.  Dad can’t be left alone, and he didn’t think he could work that out.   He did help me financially for the first time.   He gave me a $100 Walmart gift card.

Mom enjoyed hearing his stories of vacations and cruises, and glorious meals out.  They have such nice restaurants where he lives, way better than the ones here.  His wife has started using all organic foods at home, which of course we don’t have a lot of that here, unless we grow them ourselves.  They enjoyed talking clothing too - He got some amazing deals on designer clothing.  Mom  loves her clothes too.

He calls Mom a couple times of month and listens to her complain about me, making him the good guy I guess ha ha.  He didn’t mention when he’d be back - I hope it’s before Daddy’s toenails get too long!

Aricept - helping memory?

Dad’s been on aricept since he went in the nursing home.  Last month, Dr Epplin put him on 10MG.   Dr. Epplin is a wonderful doctor that specializes in geriatrics.    I just don’t know about this aricept stuff.   It’s not a cure.   It’s suppose to keep his memory from getting worse slower.   How in the world do you measure something like that?  How can you prove it’s slowed anything down?  In addition it’s about $9.00 a pill!   The warnings in the pamphlet that comes with it is quite daunting, telling you not to STOP the pills because you can never recover what you lose while you aren’t taking them.  So we take the pill every morning.   Whether it’s a panacea or a placebo I guess it doesn’t matter.  We won’t take a chance.

Here is some information about Aricept from their website:

How Aricept Can Help

Researchers have tested Aricept on people with mild and moderate Alzheimer’s. They also tested it on those with severe Alzheimer’s. The studies showed that Aricept helps cognition and function, which includes effects on memory and performing everyday tasks. Here are findings from 3 of the studies on which the FDA based its approval of Aricept:

15-week study

A 15-week study looked at Aricept in people with mild to moderate Alzheimer’s. The study compared 2 groups. One of the groups took Aricept. The other group took a placebo (sugar pill). Each group took tests that measured their thinking, memory, and how they functioned in daily life, including effects on behavior. The researchers found that:

• Compared with the placebo group, the typical patient who took Aricept showed improvement on the ADAS-cog test, which measures how well they think, remember, communicate, and figure things out
• Patients who took the placebo did worse on the ADAS-cog test during the same period of time
• Compared with the placebo group, about twice as many patients taking Aricept showed clinical improvement in the CIBIC-plus test, an interview that measures a person’s ability to function

Quick Reference-tests used in Aricept 15- and 30-week studies included measurements such as:

30-week study

A 30-week study also looked at Aricept in people with mild to moderate Alzheimer’s. In this study, one group took Aricept. The other group took a placebo (sugar pill). Both groups took tests to measure thinking, memory, and the ability to function in daily life, including effects on behavior. Researchers compared the results to see if Aricept improved or maintained these functions. The researchers learned that:

• Compared with the placebo group, patients taking Aricept scored better on the ADAS-cog test over a 6-month period
• Compared with the placebo group, about twice as many patients taking Aricept showed clinical improvement in the CIBIC-plus test, an interview that measures a person’s ability to function

6-month study

A 6-month study looked at patients with severe Alzheimer’s. All of these patients lived in nursing homes. The study compared 2 groups of patients. One of the groups took Aricept. The other group took a placebo (sugar pill). Each group took tests that measured their thinking, memory, and how they functioned in daily life. The researchers found that:

• Overall, patients in the Aricept group improved on the SIB test; those in the placebo group declined
• As a whole, patients taking Aricept declined significantly less on the ADCS-ADL-severe test than patients in the placebo group

Aricept may not work the same for each person. Some studies have shown that symptoms may improve. If symptoms stay the same—or worsen more slowly than expected over time—this may also mean Aricept is working.

How Aricept Is Thought to Work

When someone has Alzheimer’s disease, nerve cells and vital chemicals in the brain are lost over time. This occurs in parts of the brain that are key to memory and other mental processes. One such chemical is called acetylcholine. This chemical helps carry messages from nerve cell to nerve cell in the brain. Alzheimer’s may impair thinking and memory by disrupting these messages between cells.

It is thought that Aricept may help reduce the breakdown of this chemical.

Safety Information

Aricept is well tolerated but may not be for everyone. People at risk for stomach ulcers or who take certain other medicines should tell their doctors because serious stomach problems, such as bleeding, may get worse. Some people who take Aricept may experience fainting.

Some people may:

• Have nausea
• Vomit
• Experience diarrhea
• Experience bruising
• Not sleep well
• Have muscle cramps
• Lose their appetite
• Feel tired

In studies, these side effects were usually mild and temporary.

If you are concerned about side effects, talk with your doctor.