End of our rope with caregiving at home.

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I know many of you have been at the "end of the rope" when it comes to caring for an elderly parent in your home. We've come to that place over the last month and wanted to share this fork in the road we've come upon. Dad has been living with his youngest son and things have gone from bad to worse. He is in a beautiful home with everything from his own room, bathroom, TV, internet, etc. and is surrounded by people who love him , but to him, it isn't enough. At first, when he was still recovering from a lengthy illness, he was sweet and easy to be around. Now, as ALL of his doctors tell him he is FINE and can resume his normal activities and he is MAD. He wants to be waited on hand and foot. If he's not, he refuses to eat or bathe or take his medications or do anything for himself. Because none of us can be with him 24/7, he has stopped eating. His weight has plummeted drastically and his doctors have told him if he doesn't start eating, he WILL DIE. He tells his doctors that his kids would be "happy then", which of course is not true. While in recovery, he was diagnosed with major depressive disorder, but he refuses to fill the prescription for the anti-depressant, brushing it off as "crap" and not wanting to take another pill. This is a pattern of behavior that has repeated itself over the years and it is evident that this cycle will continue to repeat itself for the rest of his life. He's good for while, then he gets sick (he has several chronic conditions), gets better, becomes uncooperative, belligerent, controlling and verbally abusive and on one occasion physically abusive, then he gets sick again and the cycle repeats. This "hunger strike" has been going on for several weeks now, and we are all just done with it. My brother was out of town last week, and dad admitted he ate nothing but a bowl of soup over 4 days even though he had enough food in the refrigerator to last a month. So we are starting down the road of searching for a nursing home and financial aid for him. I know it won't be easy and when the time comes, he will fight it tooth and nail. But there does come a time when things get so out of your control and you cannot oversee their activities 24/7 that it has to be done. I know some of you are reading this and thinking "OMG, is she talking about MY parent?" All this is to say, you are not alone. WE are MANY. We are not cruel people who want to do away with our parent, even if it seems our parent is being cruel to us at times. We are mom's, dad's, brothers and sisters, parents ourselves. We do "get it." But we can't always DO IT. God bless to all. This journey we are on doesn't have to be taken alone.


When this was happening with my Dad...(wow..you really described my Dad to a tee!). My brother, who is otherwise worthless, talked to Dad

He told him...either you knock off the sh*t and cooperate or you will be put in a nursing home. The NH will simply drug you into oblivion and feed you thru a tube if you pull this violent crap on them!

It took a day or two for Dad to have that message sink in. He shut up..cooperated...took his meds. Made lunch for himself...and generally managed to cooperate. Not saying he liked it. Not saying he didn't grumble all the time about it. But..he did cooperate.

Until the final few weeks...he was so bad that I was beginning the process to find a Nh for him when he suddenly died. I guess it wasn't sudden...but I was surprised.
Thank you for sharing. I certainly, don't think that you are cruel. I hope you're able to find help soon.

Managing the care of a person who refuses to take meds that will help them is very frustrating. I've dealt with it with one of my parents.

I'd be careful of him due the violence that you describe. Would you be able to have him placed in a psychiatric hospital to get his meds adjusted? Just curious as to how a facility will mange his care if he is violent there.
KatieKate, that is where we are. His son has told him several times that the whole family is not going to have a bad day just because he is having one (which makes him mad because when he is miserable, he wants everyone else to be miserable too). He also told him that the day he stops doing anything for himself, he will go to a nursing home. That day has arrived. He may very well starve himself to death before we can get him in one, but we also won't stand by and allow him to do that...we will get psychiatric intervention if we must.

And Sunnygirl...I don't want to say the violence isn't "bad" because any violence is bad but he is in his late 80's and isn't as strong as he once was. It consists of him occasionally punching us in the shoulders (never the face), or jabbing his finger as hard as he can into your arm or chest or back. He hasn't done that in a while, because the last time he did it to me, I grabbed his hand and squeezed it as hard as I could, which was apparently quite painful and it got his attention. He was told then that if he EVER hit any of us again, that would be it...no more housing or care and he would be on his own. So far that has kept him from doing it again, but if there is any recurrence of outward aggression, we will certainly take action.
Based on his interactions and behavior, I'd be wary of believing that he has the capacity to process the ultimatums, weigh the consequences and make proper decisions. Has he been evaluated for cognitive decline? I ask because my LO went through similar behavior before her dementia became clear.

She refused meds, stopped eating, (lost over 80 pounds), withdrew, didn't want to do anything, refused to shower or change clothes, wanted to stay in bed and have her diaper changed, even though she was able to get out of bed and didn't need a diaper. (As she recovered from fracture.) And was very hostile. We couldn't figure it out, but, it was Vascular dementia, which progressed pretty quickly. I'd explore it. It might explain some things.
Sunnygirl, he was evaluated for all of the above when he was in a rehabilitation facility after his illness. Other than the depression diagnosis, he has some short term memory issues but nothing resembling dementia or Alzheimer's according to the doctors who evaluated him, and his army of personal doctors have given him a clean bill of health (GP, pulmonary, nephrology, oncology, gastroenterology....and more). He has always been difficult, being a 'my way or the highway' sort of person. Very controlling, very entitled behavior since the day I met him. I think these personality traits are exacerbated by his health problems and the fact he isn't living the life he dreamed of in his elder years. He is a very bitter man who lost everything through a series of very poor financial and personal decisions (trying to "get rich quick"). And the sad thing is, he does have the ability of a beautiful life...his son's home is gorgeous in a park-like setting and he has everything he's ever wanted or needed EXCEPT someone to do everything for him like a servant. We aren't equipped to meet that need for him so he gets mad, we get frustrated, and it turns into a viscous cycle. I'm going to contact one of several social workers that has offered assistance since his illness...all of them have been great and seem to really want to help us.
With that kind of erratic and odd behavior and they say he's fine? Hmmm... oh, well, without brain scans, neuropsychological evaluations, etc. But, if they say he's mentally sound, then it is what is is. Do you really believe that? It is sad that he's gone this way. You've tried your best. I hope something works out for you all.
Thanks Sunnygirl. It is stunning to hear them say "he's fine." What they mean is that his blood work is good, his kidney function is good, his heart is good, he shows no signs of cancer, and his lungs are as good as can be expected with COPD. No, I don't think he is fine mentally or cognitively.

I went through this with my mom two years ago...she was "fine" according to her doctor, but she wasn't fine any more than he is. She went through a rapid mental and cognitive decline, but as long as she could tell them what city she lived in, and what her favorite food was they deemed her "fit." If they had asked her to fill out a check they would have seen she couldn't do it. If they had asked her to say the alphabet, they would have seen she couldn't do it. She kept insisting she was having heart attacks, but they said she was "fine." She kept falling, but she was "fine." She missed appointments because she couldn't get ready to go. But she was "fine." Then she died. It was so frustrating and hurtful.

I would be very seriously considering having him taken to the emergency room. He is self-harming and need psychiatric care. Have the police take him there for eval. A short stay in a psychiatric lock-down unit will either reveal the nature of his psychological problems...or scare him straight.

Really...someone who starves themself for attention...that needs to be addressed. I wouldn't care if he wanted to seek that help or not...I would just call the police and explain that he needs to be take to the hospital because he has become a danger to himself.
Medical professionals who look at blood work and say " fine" mean that the patient is not dying of anything.

Get him to a geriatric psychiatrist and/or in for a neuropsych work up and you'll find out where his cognitive and mental deficits lay. Meds might be part of the answer.

Perhaps we should make a mental note that "fine" can also translate as "I don't know what you expect me to do about this."

There's fine, and there's "fine-apart-from-the-heart-failure-the-COPD-the-absent-kidney-function-and-the-..."

If you still really want to know, respond with "please define fine."

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