Anyone else here a caregiver for an Alzheimer's patient?

Or had a friend or family member with this disease?  I'm the main caregiver for my father in law who is somewhere between Stages 5 and 6.  He lives with us and we moved our oldest daughter into his house almost 2 years ago.  He's not terrible yet but has his really bad days/weeks.  This disease is so horrible, watching what was a proud intelligent man turn back into a child who, at times, can't form a complete sentence.  Looking back now we should have seen the signs but we thought it was his typical stubborn nature paired with the aging, but the signs WERE there.  It makes the hubby mad because a mans inclination is to FIX the problem, but this time he can't and he doesn't know how to deal with it.  I try to coach but I'm new at this too and swimming in un-chartered territory.  It's really a tough pill to swallow when you have to convince him that the men digging the hole next to his bed are harmless and will be done soon.....

I'm going to put this bluntly because I feel that it is the most kind way: please reconsider keeping him at home with people not trained to deal with this. I don't mean to hurt feelings, I'm just being honest. Alzheimer's is a difficult disease to work with.

I feel for you and your family. My mother had Alzheimer's and it was horrible to watch the person we knew disintegrate, cognizant of the fact that there was no way to stop it. My sister and brother-in-law were her caregivers, with me giving them a break for 4 - 5 weeks every summer (I live on another continent). She remained in her own home, but the last few years somebody had to be with her almost constantly. My sister worked nights and stayed with her during the day, with her children spelling her in the early evening whenever possible, and my b-i-l spent his nights there. Luckily my mother took to sleeping half the day, so my sister could get some sleep, and her dogs would wake my sister up as soon as my mother was awake.

She, too, had good days and bad days, with the bad days increasing in number over time. The fixations were there, too - she was convinced that people were wrecking and/or stealing her pots and pans and was incredibly irate when I told her not to worry, because a lot of them were almost 50 years old. "That girl" (one of her granddaughters, whose name she forgot) was "stealing her shoes", too. That we all found funny, because my mother for some reason refused to get new shoes, and would appropriate mine ("more comfortable") whenever I visited. I took to buying pairs for her, wearing them for a week or two, then letting her have "my old ones". My b-i-l's cooked breakfasts were hugely appreciated by her, but sometimes when you called you'd get an earful about a "strange man living in the cellar", and she wasn't sure how many there actually were. We found there was really no way of reasoning with her, and the only way to cope was to look for the funny side of her behavior.

Right before she died of a stroke, things had reached the point where she was so difficult to cope with that we were discussing the possibility of putting her in a nursing home, but really didn't want her taken from her familiar surroundings. The very worst part of the whole situation was that she was aware that she was "losing it" and kept asking why she was still alive.

Are there any self-help groups in your area for families of dementia patients? His neurologist/geriatrician may be able to recommend a group, where you can share experiences and vent.

I don't have any family with alzheimer's, but when I was in nursing school I worked as a nursing assistant at a facility that had 2 different wards for alzheimer's patients. 

One ward was for those with moderate to mild alzheimer's; the ones that were non-violent and were "cute" when they were a bit mixed up, but could generally be reasoned with. They were there either for extended respite when their regular caregivers were away on holiday, or permanent residents because they were not safe to be at home alone.   I loved working on this ward. I have so many fun and cute stories.

The other ward was for those with very far advanced alzheimer's; those who were pretty much animal-like in their behaviour; very aggressive, and a danger to themselves and others. For some there was no periods of lucidness/awareness.  Not all alzheimer's patients get to this level of dementia.  But  I hated working on this ward. 

People needed to be fed and washed and dressed, and given medication. There were a few very, very aggressive patients. For these patients the general routine was to have literally 4 and sometimes 5 people trying to get the person washed and dressed. Literally staff holding down their arms and legs so that the person doing the washing didn't get punched, pinched, kicked or bitten.

At the time I was so upset because I believed what the staff were doing was very wrong. See, in nursing school they teach you ideals.  Essentially, you do not force care on someone who doesn't want it because that is considered "assault and battery."  In the real world, those ideals sometimes clash with reality.  What do you do with someone who is afflicted with a disease that has caused them to lose all  inhibitions, awareness and rules about appropriate behaviour; those who have lost all of their judgement and self-control?  The patient needs to be washed and cleaned up if they have soiled their clothing/diapers; it's the basics of care and the families obviously expect their loved ones to be fed and cleaned, regardless of their behaviour.   My outlook today is vastly different than it was when I was working there in my first year of nursing school.

I know you guys want to do the right thing for your FIL and I commend you for trying.  However, caring for someone with dementia can take a huge toll on a the caregiver.  Never feel guilty if you find that you just can't manage and need to seek out a care home.

My father had it for several years before he died.  He had been in a nursing home for several years before he died.  It is hard to watch.  My father never gave up the love of learning.  I remember when I was a kid, this was before the internet, we had a set of encyclopedia and he would get one and just start reading.  He went to college for a year and a half but that was at the beginning of the depression and he had to quit because of money.  There comes a point where residential care is necessary.  I remember years before my dad saying he would rather call it a day before going to a nursing home but it was the only thing that could be done.  Only the very wealthy can afford 24 hour care and to make the changes necessary to the home to care for someone in the advanced stages.

We will keep him here as long as possible... there are good homes and assisted living places but they will force you to have nothing before getting help to pay for them.  But he will stay here for as long as we can possibly can.  There WILL come a day when I can;t take care of him.  I almost hope his heart takes him before the disease (he has high blood pressure).  He knows very well what is happening to him and is always calling himself stupid and that just breaks my heart.

The things they remember and forget are crazy.  He can;t remember his grand daughter (she is named after him beloved wife) but remembers her fiancee.  He is also sure that there is a door in his closet that leads to a basement, we are on a crawlspace and up until a year ago he knew that.  It's sad seeing them decline slowly, knowing what is happening, and people that don't know the person laugh if they have a shirt on wrong or can't figure out how to work a door.  Thankfully we live in a small town and everyone knows he has Alz.  He is still driving to 3 places that he is allowed during specific times because the places he is going will call us if there is an issue... his driving will be going away sooner than his license expires, that will half kill him, I am NOT looking forward to it but it beats him having an accident and hurting or killing someone and/or himself.

He is still quite functional at the moment but those bad days are getting more and more frequent.  I'm not sure I'm ready for this

It seems like initially there are random holes in their memory.  I guess that has to do with the way the brain is damaged.  There is also the sundown effect.  Start out better in the morning then get progressively worse during the day, my guess is that is the combination of brain damage and fatigue.  As it progresses the wandering begins.  It's at that point that precautions need to be taken for protection.  It is a cruel progressive disease. I have seen ads for a medication patch that is supposed to slow down the progression. I don't know anything about it.

He is on every med possible... Aricept 23, Namenda and Celexa.  The Celexa is for the depression since he knows what is happening (nothing sadder than seeing a grown man cry) and the Namenda is more for the hallucinations (he has Lewy Body dementia)  I know there are patches but the doc put him on the pills so unless there is a reason to try the patch (like when he thinks I'm poisoning him with the pills).  The wandering is still minimal now that he is here... but I know us watching him has curbed it from when he was alone.

jcat said:

We found there was really no way of reasoning with her, and the only way to cope was to look for the funny side of her behavior.

The very worst part of the whole situation was that she was aware that she was "losing it" and kept asking why she was still alive.

Are there any self-help groups in your area for families of dementia patients? His neurologist/geriatrician may be able to recommend a group, where you can share experiences and vent.

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3 of my 4 grandparents have had some form of Altzheimers or Dementia.  One Grandpa passed a few years ago and it was a blessing as he was suffering so much (physically, beyond the altzheimers).  

My one Gram, who I was very close to, is in a nursing home now.  She got to be too much for my Grandpa to handle and physically she became too weak.  Which is also a blessing in a way because she would get very combative and Grandpa would have to call for help.  On her good days you can talk to her for a while; 10-15 minutes without exhausting her.  On bad days you either cant wake her up or she doesn't recognize you at all.  She thinks she is in the nursing home because my Grandpa needed to move his girlfriend in before their baby was born.    My Grandfather is 91.  Like jcat said; you cope by finding the humor in it.  She also used to see bugs all the time.  I also live in another state; so I don't get to see her more than a couple times a year.  Sometimes she knows me; sometimes she thinks I'm my Aunt.  One time my Mother also was there and my DD was a baby at the time. She kept insisting my Mom needed to have a baby now. I finally figured out she thought I was my Aunt, Mom was herself, and DD was my older cousin.    In some ways; she is easier to deal with at this stage because she's no longer caught between knowing something is wrong with herself and being so combative, hiding her medications (or dropping them; including her diabetes meds!) and attempting to do things that weren't safe around the house (she made me nervous just making toast and tea).

My other Grandma is 94 and the best out of the 3 of them dealing with it.  She is very childlike and generally has a happy disposition.  Unless my Aunt (her primary caregiver) tries to make her take a shower.     She's gotten quiet the last few years. She used to repeat the same stories all the time.  I took it as opportunity to remember where she came from.  Family history really.  She doesn't try to wander anymore. She used to walk up and down the street for exercise.  Fortunately my Aunt and Uncle are able to keep her home.  My Aunt is a nurse and only works 3-4 days a week.  My uncle is home all the time. So she is never alone.  My Dad spends time with her on the weekends and sometimes my cousin's take her for things as well.  My Aunt says if Gram's mind hadn't slipped; she probably would not have handled Grandpa's death.  They never left each others side unless it was absolutely necessary.    He was her rock.  Her mind started slipping about the same time Grandpa's did!

My Aunt also cared for my Grandpa till he had to be put in a nursing home.  Without her nursing skills (one cousin is also a nurse and the other was an aide in the hospital during college) he wouldn't have been home for as long.  He had suffered from multiple health conditions and was no longer able to walk and didn't recognize people most of the time.  My Dad would ask who his daugher was and Grandpa would say my name and look at Dad like he was looney.  But then Grandpa would look at me and have no clue who I was.  He passed a couple months later.  He had been in a lot of pain; it really was a relief to let him go.  I miss him of course and he never got to know DS; his one and only grandson.  Taking his car was the hardest thing. They were very active with the American Leigon; which is directly down the street from their house and the only place he drove the last year or so.  But one day my Dad watched Grandpa bounce his car off the snowbanks on either side of the road 3 times. That was it.

When my first Gram started with this the self help groups were very good for my Grandpa and Aunt (sorry if it's confusing). Just to understand what is normal and have the chance to talk to people who understand.  I think not being able to fix anything was hard on my Dad too.  I would just tell him; I'm enjoying them as they are while I have them.  I do think it helps that I don't have to deal with it on a daily basis.  I get some perspective.  I also get to bring babies to see them; which always brightens both my Grandmothers right up.  We just started skyping with one of my Gram's and she really got a kick out it.  I'm glad little things like that can make her days happier.

jcat said:

She, too, had good days and bad days, with the bad days increasing in number over time. The fixations were there, too - she was convinced that people were wrecking and/or stealing her pots and pans and was incredibly irate when I told her not to worry, because a lot of them were almost 50 years old. "That girl" (one of her granddaughters, whose name she forgot) was "stealing her shoes", too. That we all found funny, because my mother for some reason refused to get new shoes, and would appropriate mine ("more comfortable") whenever I visited. I took to buying pairs for her, wearing them for a week or two, then letting her have "my old ones". My b-i-l's cooked breakfasts were hugely appreciated by her, but sometimes when you called you'd get an earful about a "strange man living in the cellar", and she wasn't sure how many there actually were. We found there was really no way of reasoning with her, and the only way to cope was to look for the funny side of her behavior.

Right before she died of a stroke, things had reached the point where she was so difficult to cope with that we were discussing the possibility of putting her in a nursing home, but really didn't want her taken from her familiar surroundings. The very worst part of the whole situation was that she was aware that she was "losing it" and kept asking why she was still alive.

Are there any self-help groups in your area for families of dementia patients? His neurologist/geriatrician may be able to recommend a group, where you can share experiences and vent.

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Yep... a lot of this sounds like Baldy (that's my FIL) he had very little as a child so now as an adult he never throws anything away, since the onset of Alz it is exacerbated the behavior and in the last 10 years he has become somewhat of a hoarder.  Now that he lives with us that has become an issue.  Of course everyone is always stealing something from him.  It could be a rusty washer he found in a parking lot and it's worth more than a pot of gold.  He stashes food constantly, he has 37 pairs of brand new pants that he has never and will never wear, he also has a suit that his wife picked up from the cleaners (she's been dead over 35 years) and it's still in the cleaners bag.  Again, he will never wear it but suggest donating them to a veterans association and he turns into a brick wall.  They are HIS and that's the end of it.  We are slowly shedding all the garbage he brought ex: 2 55 gallon bags full of styrofoam meat trays and empty deli salad containers that he knew he could use for SOMETHING.  He has now gotten attached to empty cat litter containers and it cutting the tops off them and adding hinges and turning them into a tool kit... the things he comes up with are crazy, but he's occupied and proud of them so we just compliment him and move along.

As far as self help groups.... not within 50 miles.  There is the 24 hour Alz.org people I can call but it hasn't gotten there.  Yet.  It seems this stage is dragging on and on, but I know in my soul that the next stage will make this a happy memory.  I just wish my husband, his SON, would take a bigger part in his dads care.  One day he's gonna come home and dad won't recognize him and it will only be his own fault.  His dad depends on me for everything, and since my parents are both gone, he's the only dad I have left, and I will care for him as long as I can.  I also have a Alz board and now you folks that will understand what I'm dealing with, that helps a lot.

Originally posted by:  Natalie_ca

I don't have any family with alzheimer's, but when I was in nursing school I worked as a nursing assistant at a facility that had 2 different wards for alzheimer's patients. 

One ward was for those with moderate to mild alzheimer's; the ones that were non-violent and were "cute" when they were a bit mixed up, but could generally be reasoned with. They were there either for extended respite when their regular caregivers were away on holiday, or permanent residents because they were not safe to be at home alone.   I loved working on this ward. I have so many fun and cute stories.

The other ward was for those with very far advanced alzheimer's; those who were pretty much animal-like in their behaviour; very aggressive, and a danger to themselves and others. For some there was no periods of lucidness/awareness.  Not all alzheimer's patients get to this level of dementia.  But  I hated working on this ward. 

People needed to be fed and washed and dressed, and given medication. There were a few very, very aggressive patients. For these patients the general routine was to have literally 4 and sometimes 5 people trying to get the person washed and dressed. Literally staff holding down their arms and legs so that the person doing the washing didn't get punched, pinched, kicked or bitten.

At the time I was so upset because I believed what the staff were doing was very wrong. See, in nursing school they teach you ideals.  Essentially, you do not force care on someone who doesn't want it because that is considered "assault and battery."  In the real world, those ideals sometimes clash with reality.  What do you do with someone who is afflicted with a disease that has caused them to lose all  inhibitions, awareness and rules about appropriate behaviour; those who have lost all of their judgement and self-control?  The patient needs to be washed and cleaned up if they have soiled their clothing/diapers; it's the basics of care and the families obviously expect their loved ones to be fed and cleaned, regardless of their behaviour.   My outlook today is vastly different than it was when I was working there in my first year of nursing school.

I know you guys want to do the right thing for your FIL and I commend you for trying.  However, caring for someone with dementia can take a huge toll on a the caregiver.  Never feel guilty if you find that you just can't manage and need to seek out a care home.

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My oldest daughter worked at a nursing home here in town, it has been torn down for a few years now, but they had what they called "Memory Lane" which was the dementia ward.  Every other Thursday the volunteer fire department held bingo for the residents and a few of the A;z patients would join us.  They were so cute in their simple way, every day was a new adventure for them, meeting new people every morning, at least new people to them.  The only way to deal with them was to step into their world since there was no way to bring them into yours.  A few would get stubborn and irate but it didn't last long and the nurses were always there to help.  It was so sad at first, I didn't understand, I thought people just forgot stuff, now that I'm caring for someone and have done the research I know how ugly and devastating it will be.  Not a soul on earth deserves an end like this.  I also know there is no way I can offer the care that is involved in a combative grown man who needs help with the most basic needs.  When that time comes I will have no choice but to find a permanent place, if he lives that long.  Me trying to give the care I'm not qualified to give will only serve to do him more harm.  The facilities here are clean and have compassionate people working in them, I also know someone at every home so that inside track can help me make a decision.  I won't like it but at that point, it's not about me.  And seriously, if he is that far gone, he won't remember what is happening in 10 minutes anyway.  My fear is this.  What if, he is in a home and comes to us with a crazy story about abuse and we don't believe him because of the disease when there is a small chance that he was having a lucid moment and what he is saying is true...

Originally Posted by Colts2Broncos  

 The only way to deal with them was to step into their world since there was no way to bring them into yours.

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Nursing school was teaching us to reorient them to place and time. I didn't agree with that at all.  At first I tried, but it would lead to the patient becoming upset and even belligerent, so I just started going along with the flow. If they thought I was their daughter, then I was their daughter for a little while.

I remember one patient who was a retired nurse. If you didn't lock the medication room, you would find here in there dispensing medications!   There was another patient, a retired cardiologist who would often get his hands on a stethoscope and do cardiac assessments on other patients. I remember one day he called me over and told me "Nurse! This woman has a heart murmur!" I passed it along to the ward physician and strongly encouraged her to follow-up on it because the information came from a cardiologist.  Sure enough the woman had a heart murmur and required heart valve replacement.

There is thought that alzheimer's is a form of Diabetes known as Type III.

http://www.sciencedaily.com/releases/2007/09/070926113835.htm

http://opinionator.blogs.nytimes.com/2012/09/25/bittman-is-alzheimers-type-3-diabetes/

I have often found that if an advanced patient starts asking why her mother (who has likely been dead for decades) hasn't been there to visit like momma promised she would, it's best to not try to explain that mom has passed, mostly because you;ll get blamed for murdering her, but rather to just say "I don't know why she hasn't been here yet, but why don't you tell me about her" it redirects the conversation and soon enough they don't remember waiting on mom.  It's easier on everyone all the way around.  They can certainly get belligerent and demanding which I feel does more damage upsetting them.

I can't believe that story about the cardiologist story, that's incredible that he remembered THAT but probably not his own family

That is the best of going with the flow.  I was a home health aide and took a interest in alz.  What it can make a person do is just so strange.

A "loving lie" of Oh mom is delayed at the bake sale, or anything that the person would normally do that many years ago(asking how old the kids are will give you a guess of where they are).
 

Agreed... sometimes a lie is easier for them to accept than the reality.You know, as if the brain wasn't a mystery from the start, this just adds to it. If the docs couldn't figure out the miracle of the healthy brain, they'll be a BIG long time figuring out how to fix it

I can only say prayers going your way for the strength you need to do what you are doing. He is a blessed man to have family who love him enough to take care of him and help him.