Alzheimer's Disease and a Persistent Parental Caretaker...

[ponycar17]

Let me lay out the story.

My step-dad is 13 years older than my mother. She's 56 and is in basically perfect health. His dad had alzheimer's disease and it was a serious drain on my step-dad. He always said that there was no way that he wanted to ever live like that.

Well, he's there.

My mother, who until recently had gone back to school and got her a fairly good job with a nationwide pharmacy chain, gave up her job to care of him.

He's also a dialysis patient and goes 3 times per week for treatment. He's had a heart attack in the past month, and is a bypass survivor from back in 1995. He's occasionally violent, incoherent and irrational, often striking out at her. He also can't walk very well now and has started falling often.

Still, my mom will not let him go into a nursing home. He's grown so dependent, almost child-like with her, that he has to have her even at his dialysis treatments or else he grows irritable and violent with the nurses.

Occasionally, he remembers her name. She can talk about him in front of his face and he doesn't recognize who she's talking about and doesn't ask questions. He can't eat on his own any more and occasionally has "accidents".

She has parents who are still in their rational minds but are VERY sick. She helps with them but her help is limited. She has to time-share with full-time caretaker duty for her husband. She can't keep her grandchildren because of this. She can't work or advance herself because of this... It's a full-time job. Her health WILL INEVITABLY deteriorate because of the stresses that she's taken on.

So, how do you convince someone that a nursing home is the ONLY OPTION? I'm only a step-child to him. His son, who's older than me insists that my mom do something about his continued care but she refuses.

How do you approach this? He's stated his wishes in the past and she knows them. He doesn't want to burden someone like his dad did. His son has stated his desires. I've stated mine... What do you do? How do you convince someone that they haven't abandoned a spouse by admitting them to a nursing home facility? In all honesty, he wouldn't remember any of us in 30 minutes after admission. Yes, he's that bad...

This is a drain on all of us...

[armedandsafe]

Check your PMs

Pops

[CampingJosh]

PC, I don't envy you. I also don't have any advise.

But I will pray. Hopefully someone with a bit more experience than I will be along shortly as an answer to those prayers.

[Vladimir]

For his safety and quality of life he should be in a facility with individuals trained to take care of him. Your mom's well being and quality of life is certainly important, but it is not the only issue here. If he is as you describe, she cannot provide the care he deserves and needs.

Have you tried wording it that way to her? Perhaps she feels that it would be selfish of her to put him into a care facility.

Will pray for you, tough situation all around.

[HunterAlpha1]

my grandma is in much the same condition as your SF. for the "accidents" we have her wear depends(adult diapers). she was violent for awhile, but she's mostly past that phase now. when she started having the violent outbursts we got her on calming meds, i forget which ones.

she isn't a dialysis patient though, so i don't know exactly how much of a drain that is on your mom.

one thing we've done is get my sis and grandpa joint power of attorney over her, so anything that needs done they can do without alot of fuss over whether or not it's the patient's will. if you're mom can't be made to see reason(and i sincerely hope that she can!), you step brother might look into getting power of attorney over his dad and then do what needs done.

also, if you can afford it, you could look into a retirement home. good ones have the staff and facilities necessary to take care of alzheimer's patients, and your mom can stay there with him. and i'm sure some of them may even have dialysis equipment and personnel to use it.

i hope you can sort things out and that everyone involved will make the right decisions.

[Woodnut]

PC, I know exactly where you are coming from. My Dad was about that bad. He was in his 80's when it was the worst. I am an only child. My mother was 8 years younger than he was and was a heart patient. She had Open heart surgery when she was in her early 70's. She did not want to give up and send dad to a nursing home. I was on the road working and could not be with them. When Mom had her second round with her heart, (because of the stress) she could not take care of him any more. I finally convinced her to put him in a home and go with him, so she could look after him there. She finally agreed to go.
I said all this in order to say, it's hard to realize that this is a dreadful desease and is very hard to cope with. You actually loose your love one and they are still walking around, but you can't communicate with them any more.
I can only pray for you and wish you the best with what ever the out come may be.
May God Bless and look over Ya'll.

[HunterAlpha1]

Originally Posted by Woodnut

PC, I know exactly where you are coming from. My Dad was about that bad. He was in his 80's when it was the worst. I am an only child. My mother was 8 years younger than he was and was a heart patient. She had Open heart surgery when she was in her early 70's. She did not want to give up and send dad to a nursing home. I was on the road working and could not be with them. When Mom had her second round with her heart, (because of the stress) she could not take care of him any more. I finally convinced her to put him in a home and go with him, so she could look after him there. She finally agreed to go.
I said all this in order to say, it's hard to realize that this is a dreadful desease and is very hard to cope with. You actually loose your love one and they are still walking around, but you can't communicate with them any more.
I can only pray for you and wish you the best with what ever the out come may be.
May God Bless and look over Ya'll.

i often find myself speaking roughly to my grandma, subconsciously hoping that if i can get her riled up enough she'll "snap out of it". she used to be a very stubborn and saucy person; speaking harshly to her would usually result in an equally harsh, yet very humorous response.

i have to remind myself daily that she is no longer the person she once was. she spends 16-20 hours a day in bed, and the rest sitting in her rocking chair staring at the wall or repeating the same question over and over again to whoever happens to be in the room. the old her is gone, and barring a massive medical miracle, won't be coming back.

[Juker]

pony, I admire your mother more than words can say.

Clearly she is carrying this burden out of love for her husband, despite its obvious detriment to her. We've had several cases of infirmity and Alzheimers in my large family - those who were put in nursing homes, and those spouses who chose home care. One of my aunts cared for my uncle for ten years at home, rarely leaving the house for a decade. She passed a year after he did. She simply told the family that she took a vow to love and cherish him til death, and looked forward to spending eternity with him in Heaven.

My father spent most of his career as an engineer designing and installing alarm systems and call stations in nursing homes. It affected him greatly, so much so that my siblings and I have sworn we'll never put my parents in a home, no matter what.

I say honor her desires and help where you can. Since most of his care is on her shoulders, and she has chosen this path willingly, then it's her call.

[rosierita]

my dj had alzheimers. it was horrible. my grandmother was a lot like your mom. my dj became very violent, in fact, he tried to kill her. even that didnt stop her from her decision to care for him in their home.

but, there came a day when he called me, which he wasnt supposed to be able to do bc he was in the end stages of the disease... & she didnt know about it...

that day, i called my mom, we talked about it, then i called my grandmother. i told her about the phone call, she didnt believe me. then, as lovingly as possible, i told her that she could not keep doing this, that she needed help with him.

she broke down & cried, but agreed to the help. that's when the decision was made to place him in a nursing home. guilt ate at her something terrible, but once he was there & she was able to get some rest, she felt better about the decision.

i dont agree w/ nursing homes, i believe that we should care for our loved ones, but i became grateful for them in this instance because people w/ alzheimers are so very unpredictable & can become extremely violent.

pray about it pony. trust God to show you what to do. He will.

[armoredman]

My prayers, sir. My wife went through caring for her ailing father who died from this dread disease. From what she told me, it is terrible. Prayers to you and yours, sir.

[Gun Geezer]

I went through this with my brother and am currently going through it with my mother-in-law.

My advice would be to go with a nursing home as soon as possible. To try and tend to an Alzheimer's patient who is a close relative or spouse is much harder on the care giver than on the patient. The emotional toll on the care giver cannot be measured as it tears ones heart out to watch a loved one slip away. The Alzheimer's patient, on the other hand, once reaching the stage where they no longer realize they have a problem, can appear to be very happy if their basic needs are provided. Quality and quantity seem rather unimportant and sensual stimulation in the form of noise seems more than adequate. My brother, for example, had his TV blasting 24/7 never caring what was on and not able to figure out the remote for simple things like turning the set on and off, changing the channel or adjusting the volume.

As the disease progresses, the patient loses their capacity to relate to time. They wont know whether you were there to visit last night or last year. My brother recognized no one except myself and my wife and had he lived longer he probably wouldn't have known us. He couldn't tell me what he had just eaten, nor did he particularly seem to care.

The route an Alzheimer's patient goes through is in my experience fairly predictable as my mother-in-law is following the same course my brother took. Only the time line is different. My brother wasted away for 2 yrs. before a massive stroke ended our mutual suffering.

There are medications that mellow Alzheimer's patients out pretty well. My mother-in-law sleeps a lot during the day and most of the night. Both she and my brother got confused very easily, not being able to do usually familiar things like finding the bathroom or cutting their food. Falls are always a concern and the older and poorer shape the patient is in the worse it is. My brother was in his 50's when he first exhibited symptoms but did not have problems walking until he was in his late 60's. My mother-in-law is 93 and has fallen several times requiring hospitalization. It is impossible to watch them 24/7 and the guilt you will feel when they hurt themselves is hard to dismiss.

All this being said, It was much easier on our life and our relationship to put my brother in a nursing home since I was his closest living relative and had no one else to argue the decision. My mother-in-law has 3 daughters and a son who could never reach consensus to put her in a home. They take turns having her live with each which I believe confuses her even more and creates more problems. Her son refuses to take her and one daughter is in total denial that her mother has Alzheimer's related Dementia. She would be much happier and better cared for in a nursing home. I hope this is some help.

[gad1111]

I saw pretty much the same kind of things with my great grandfather and my grandmother on the other side of the family, and now with one aunt and my grandfather is starting to get bad. Alzheimer's is probably the worst disease for the family to handle. I pray for anyone who has to deal with it.

[ponycar17]

Thanks for the encouraging words and suggestions folks. I appreciate it very much. I have indeed approached my mother in many of the ways recommended above. She is in extreme denial. We can only do what we can do for her, since all of the children have careers to attend to in order to do what's best for OUR immediate family. The thing that gets me is that she has lost track of taking care of her parents, who are still very much here in mind, and still very much in need. We do what we can for them but to be burdened with someone who doesn't know you, and to forsake your parents? That, I don't get... Oh well... It IS in God's hands...

[millwright]

Pony, you've got a tough row to hoe with no end in sight !

We're doing the same for my MIL, and watching the toll its taking on my wife is a heartbreaker.

From personal experience, it seems its time for "professional care" . This entails some serious consideration of options. And that means consulting legal counsel before you make any changes. I can't stress enough how important this is as it effects your mom as well as your SD ! >MW

[fleetwood1976]

the furnace burning up my ammo money

[rosierita]

Originally Posted by ponycar17

Thanks for the encouraging words and suggestions folks. I appreciate it very much. I have indeed approached my mother in many of the ways recommended above. She is in extreme denial. We can only do what we can do for her, since all of the children have careers to attend to in order to do what's best for OUR immediate family. The thing that gets me is that she has lost track of taking care of her parents, who are still very much here in mind, and still very much in need. We do what we can for them but to be burdened with someone who doesn't know you, and to forsake your parents? That, I don't get... Oh well... It IS in God's hands...

have you looked into "daycare" for him, to give her a break? maybe she'll consider that... if she could get a few hours to rest & clear her mind, her perspective will likely change. its a very tough decision, i'm not trying to dismiss that, but the pressure she's under is enormous, "catching a break" just may help her.

good luck, i know there is no easy solution.

[HunterAlpha1]

Originally Posted by fleetwood1976

the furnace burning up my ammo money

i believe you meant to post that here: http://www.thefirearmsforum.com/show...d=1#post845150

[ponycar17]

Originally Posted by rosierita

have you looked into "daycare" for him, to give her a break? maybe she'll consider that... if she could get a few hours to rest & clear her mind, her perspective will likely change. its a very tough decision, i'm not trying to dismiss that, but the pressure she's under is enormous, "catching a break" just may help her.

good luck, i know there is no easy solution.

That's an idea rosierita but I don't know how it would fit their situation. Dialysis is a 3 day per week deal and they spend 5 or so hours there every day that he goes. There's not much time where he could go and actually give her a break. He's also like a child in that he can't let her leave his sight. It would take an extended absence to get him used to her not being there. As far as cost, they definitely can't afford it due to her not working in order to care for him. The only situation I could see really helping would be for him to go into a nursing home and allow her to go back to work. Work would take her mind off of things and she'd be free in her time off to visit and care for her parents when needed. After a while, he'd also totally forget her. That would likely make her see how far gone his mind really is, and would probably help back up her decision to put him there.

[ponycar17]

UPDATE - A week ago my step-dad, in one of his more coherent moments, revealed that he no longer wanted to go to dialysis. My mom took it hard but accepted it since she knew how bad he had been struggling.

His doctors had recommended that he discontinue dialysis in October of 2011. My mom refused... Well, ending dialysis is a one-way ticket into hospice care since they rarely last over 10 days after discontinuing treatment. So, Monday hospice came out to begin in-home care. After the nurses realized how dire his health really was, he went into the actual hospice house on Tuesday night. It has been a LOOOONG week.

He passed away on Saturday after his illness finally took him. Remarkably, my mother is taking it well. I think that knowing that he decided his fate relieved her of a lot of the burden of having to regret any decisions regarding his care. If he hadn't voiced his opinion she'd still be holding on and struggling to care for him in the home on her own.

I pray that she'll be OK in the coming months, as her father just got some pretty dire news concerning his condition yesterday. When it rains, it pours...

[rosierita]

(((hugs))) i'm so sorry for your family's loss.

[ponycar17]

Thanks rosie. Everyone is handling the situation surprisingly well.

[Capt Mac Turk]

Today last year my Step mom passed she stayed with my Pops 40+ years and she was pretty much a Saint . he was a real PITA & he had his moments
He was also getting "out there" & acadents But god bless her she hung in there with him.

He Died New years night 2011,,,, Jan 8-2012 She died. It was almost as if she said OK I have done all I could to help him & then layed down & gave up


Then on top of all this my Mother in law lived with Us,
they say deaths run in threes well Jan 17 She passed.

My Ashley lost her 3 remaining Grandparents in 18 days
Really hurt Me & my Wife but Ashley almost dident even blink
The school knew of what was going on & sent us a notice of a
Hospice program for kids losing loved ones. "Camp Good Greaf"
(I think this realy helped her @ age 12)

Its NEVER easy losing a loved one but 3 in 18 days even put Me & Mary in a tail-spin for a few months.

You & your Family will be in our Prayers

[ponycar17]

Thanks Capt Mac, and your family will be in my prayers... It's difficult to say the least but that dreaded "3" thing is all-too-often true.

My Grandfather got word that his health issues have likely turned cancerous and at 75, it's difficult to justify invasive probing to find out what exactly is happening, considering the possible complications. He's at peace. His deadline to ask for a biopsy is tomorrow. I suspect that he'll decline. We're OK with his decision, although this will be a VERY difficult time for all of us. For my step-dad, we had ample notice. My Grandfather however, took a sudden nose-dive. My 4-year old boy is already asking questions about why God wanted his Grandpa. I don't know how we could handle two so close together.

3 would be a definite test for everyone...

[armedandsafe]

Prayers from here, PonyCar.

I know the 3's version of which you speak. It is hard on everyone.

"Cry for your loss. Laugh and glory in your memories." Grandpa Carter.

Pops

[ponycar17]

Thanks Pops!