Satguys members who care for family member with Alzheimer's Disease

[TheForce]

A year ago I found myself needing to take care of my father who is going through final stages of this. He was first diagnosed with it about 5 years ago shortly after my mother passed with a sudden death. Visiting Home Helpers and good neighbors enabled him to live at his home in PA until January a year ago when he broke his hip. My much younger sister is still raising her own family but live an hour away so she only visited about once a month. After rehab, I went to live with him for about 5 weeks, pretty much giving up my business. I was essentially forced into retirement but it was a convenient time to do that due to the economy anyway. During that month Dad worked with his attorney and financial adviser to move all decisions over to me as POA, so that is not a problem in my case but I know some families who deal with this and suffer the financial burden as well. We are fortunate not to have this burden. He has enough income and savings to cover his (necessary) expenses indefinitely including medical.
His recovery from the hip surgery was very traumatic and caused his Alzheimer's Dementia Plus he has Parkinson's Disease Dementia, to worsen rapidly.
Today, he can no longer write his own name, and has trouble composing a sentence with a coherent thought. He now has fits of rage one minute only to forget and not even know he did what he did 15 minutes after. I get him ready for bed about 10PM and he can't remember how to walk, then 3AM I discover he is up and heading to the front door "to go visit my mother" who he claims is in the hospital.

I was wondering if any Satguys members have experienced this and how you were able to cope with it.

 

[navychop]

You are singing a tune I am well familiar with. We got my in-laws into a retirement community (partly on a charity -er, "scholarship"- basis). Then the "sane" one, my MiL, tried to move out. Had a heck of a time, extremely stressful time, but they're still there. Got their house sold just in time.

8 years ago, we could no longer deny my FiL was having dementia and severe memory problems. He is deteriorating slower than most. Part of a study on treatments that has worked out about as well as anything can. Right now, he's a happy guy. Most of the time. He's going thru a klepto phase. Did yours?

Lot more details, don't want to go into it. They'll be visiting for Easter supper, probably stay overnight. She's probably good for another year or so of daytime driving. After that........

Coping? Well, with my health problems, my wife's health problems, my son's cancer and BiL health problems, we've been "distracted." Overwhelmed. Just gut it thru, one day at a time.

 

[Bobby]

My heart goes out to both of you. As you say, Navy, gut it out a day at a time. I've got good vibes (I'm not a praying man) headed in both of your directions.

 

[brownover]

My heart goes out to both of you too. I have experienced it with my mother-in-law. My wife was her only child so all the care fell on us. I wish I could tell you it will get better, but it won't. Experiencing the same with my wife now. I am a praying man and I will pray that God will give you the strength you need. We are not promised good health physically, we are promised the opportunity for good spiritual health. Feel free to pm me anytime just to talk. It helps.

 

[Van]

As some may remember from the past my wife ( fiance at the time ) and I cared for my grandmother who had the big A and dementia plus diabetes and diversticulitis ( I know spelling is wrong, hire Johny C and take me to court ) and prior to her it was my cousin and I. I stayed with her for 5 years dealing with the heavy to medium stuff around the house and eventually the light stuff while one of my uncles handled the finances. The hardest part of it all was my grandmothers mood swings which predated her mental illnesses for an eternity though I'm wondering if they could have been red flags warning of the impending doom 40 or 50 years ahead.

My grandmother was the vision of grandmotherly sweetness until you hit puberty at which point it could go one way or another and at times she was a vicious evil destroyer of all that was happy within a 5 mile radius including the ability to instantly de-masculine a man with 5 words. This kind of evilness became magnified when she got further into the late stages to the point that it forced me to move my wife and I out of the house and repeatedly pushing my uncles and aunt to get their crap together and get her into a home because it was beyond what we could do anymore. Two months after we left she was still in the home, it was turning into a pigsty and she fell and cracked her hip and three months after that she passed away.

As much as I loved her I am still angered by her actions and I do realize that allot had to do with her illness but words can and do cut deep and hers cut through steel. I as someone that has been through it would encourage you to get additional help as your father gets worse such as double keyed deadbolts so he cant get out of the house and window alarms as well. You may want to consider an overnight aid or moving him to a 24 hour facility which would lessen the stress on you considering the health scare you had a while back.

There's nothing wrong with taking your father out of your house and moving him to a 24hour staffed facility, I wish that my uncles had done that but they didnt and I blame them for her death and I carry some of it on my own shoulders even though I gave them significant notice that we were going.

 

[brownover]

My wife was determined not to put her Mother in a nursing home. However, she finally gave in. And guess what! My mother -in-law had no idea where she was so my wife may have lost the battle, but she won the war.

 

[TheForce]

Thanks everyone for sharing. I knew I could count on friends here for some support. I can identify with many of your stories.

Van- Thank you for your sharing. I too have experience the words that cut but have gotten over it. My father denied my existence in a state of mind that lasted the longest after he came out of anesthesia from surgery. In addition, he kept seeing my sister as his wife, my mother who died. Worse yet, he had her husband pegged as his only son, me. My BiL didn't know how to deal with that so he just accepted his new position as being me ( when I wasn't around) But he is over that now and I understand it was the dementia that was the root of it. Van, that's what I think you need to do so the hurt will go away. Think of it as their illness that makes them say those things.

My Dad has not gone through the klepto stage yet but I have read about that. He may skip that, I hope. He just goes in and out of forgetting basic human functions like how to put on a pair of pants, shirt etc. The worst is when he forgets how to walk. Last night he was wandering around the house every hour and I had to keep guiding him back to bed. after 3 hours of sleep he now doesn't recall how to walk again. This as in the past, will probably last for a day or two. Along with not knowing how to walk, he is completely confused and can't decide anything for himself.

Personally, my biggest problem is when to let go. When to say now is the time to go to that nursing home that specializes in PDD and ADD. I did the screening last year so that part is done but the decision rests with me and my wife. I don't need to tell you how she feels.
I'd be interested in learning how you all came to the decision. The experts at the home said the easiest will be after he enters the final stage where he goes off and doesn't come back.
Now, when Dad is aware and is able to understand conversation, he repeats he doesn't want to go to a home. BTW- that is what he did with his mother. She died in a couple months after going there.


brownover- It is tough dealing with my father but it brought me to tears reading how you are having to deal with it with your wife. Lots of prayers heading from here to you my friend!

 

[dfergie]

We did it for our Mom's safety, she had the Klepto mode, then got into the wandering stage (we had shut off the gas to her stove a long time before that) it was hard...

 

[navychop]

"The experts at the home said the easiest will be after he enters the final stage where he goes off and doesn't come back. "

Not sure if I can agree with that. Depends upon how you take it. A friend at work visited his mother for years after she stopped recognizing him. Was not easy.

My boss's father was a walking vegetable, guided with gentle pushes, totally slack face. It was extremely hard on all of us. Especially his son, who sees that as his future.

You bring back memories. I've been mistaken as his son, a stranger, and a renter (in my own house). With his mental decline, the physical decline is now accelerating. Very mixed feelings about that. We all get some guilt in this process....

 

[brownover]

We let my mother-in-law live alone until she got so she would pack the car everyday so she could go "home". I had disabled the car months before so she could not drive it. We went to her home twice-a-day everyday to administer meds and check on her. She lived with us 11 months until she got so bad that she thought scatter rugs on the floor were mudholes and we would have to force her to go over them. Ever try to move a person with their limbs locked and do it in a manner so that you don't hurt them? She only lived 6 weeks in the nursing home, but her dr. did a brainscan before she was admitted to the home and told us that her brains looked cheese with plenty of holes. This was 12 years ago. Thanks for your prayers Don. My wife was in a automobile accident in 1989 and suffered a closed head injury. She has no short term memory. Drs. are not sure if all of her dementia problems are getting worse because of the accident or if she is slipping into altzheimers. The one thing we are sure of is she is getting worse. Thank God for dvrs because I am constantly pausing tv because she can't even remember the characters in a movie. So I have to stop it and explain. Pray for my patience.

 

[mdonnelly]

My Mother developed some Alzheimers' symptoms (repeating stories, shaky writing, forgetfulness, ...) in her early 80's, but it was tolerable until one day she fell, broke her hip and had a stroke (not sure what the sequence of events was, they all happened at the same time). After that she was severely disoriented for a number of weeks.

We knew she couldn't live alone, so we tried putting her in a 24 hour care facility. That made her so miserable that we brought her back to her house after just a few days. It was clear that she was deteriorating, so we entered an in-home hospice program with a professional (LVN type nurse) 24 hour attendant. She was much happier up to the end, but still disoriented. One time she asked me where my father was (he had passed away 20 years before).

I believe that she thought her caregiver was my wife, even though we lived 1500 miles away. We let her think that, because I think it made her feel better. It does make me sad though, because we couldn't be there with her all the time before she passed away.

 

[TheForce]

Ever try to move a person with their limbs locked and do it in a manner so that you don't hurt them?

Yes, several times a day!

I decided to try a new TV channel today. TV Land. He seems to enjoy it and remembered the character Hoss on Bonanza.

The local Alzheimers care facility has a respite program to try for a week at a time. I've been thinking about breaking him in with that service.

 

[navychop]

Do it. You might try the day care first, and build on that.

 

[TheForce]

Daycare won't do it for us. However, the week minimum stay Respite care applications are underway now. Two of their staff visited us in the home today to get a feel for his needs. We're scheduled to get our first break in early May.

So guess what we are going to do? We are headed to Pennsylvania to my wife's mother who is in a Alzheimer's care facility. For Mother's day you know...

 

[navychop]

Can't win.

 

[TheForce]

Just an update to my situation.

My dad is into the respite care now for a half week and things aren't going too well.

I had planned to go visit MIL in PA this week but as luck would have it, we suffered a death of a new born granddaughter last week. Very sudden pregnancy issues but my daughter is doing well physically now and is home from the hospital after surgery. The baby died on their anniversary.

So, canceled the trip and with all that going on it's a good thing dad is in respite care to give us some time to deal with the other crisis.

For my father, it has been a very bad experience and he has become completely combative and has tried to escape twice through the window. They have had to restrain him in the special advanced alzheimers unit for the balance of the week. While the original schedule is to have him return home this Saturday, it is probably time for us to make arrangements for him to be committed permanently. I've been visiting him daily and the visits are really difficult.

 

[Scott Greczkowski]

Sorry to hear the bad news Don. You guys are in my prayers.

 

[goaliebob99]

Brother Don, if there is anything I can do to help, let me know. You know that all of our thoughts and prayers are with you.

 

[dfergie]

My Condolence's on the loss of your Grand Daughter Don... we're here for you!

 

[TheForce]

Thank you all and I always know who my friends are. We're getting through it slowly. It is hardest on my wife than me because she is staying with our daughter for the week while she gets back to being able to care for our grandson.

Had a session with another Doctor last evening and he also believes my Dad has advanced Parkinson Dementia as well as mid stage Alzheimer's. He has some ideas on some different meds to try to help his shaking and muscle locking which causes him to fall all the time.

Brother Don, if there is anything I can do to help, let me know.

Yes, I get cranky at times like these so if you think I'm out of line shoot me a PM and put me back facing east.