I have an 86-year-old dad who lives in a skilled nursing facility. He is an amputee and has dementia. I am age 42, by the way. Today I received a call from the home in regards to hospice care for him. The home wanted to know if I would be interested in that. As of right now, no one knows about this except the home, myself, and my husband (I mean other family members). I assume this means that his doctor thinks that he maybe has only a few months to live. I will soon meet with someone (I assume) to discuss it more. So in other words, my dad is doing very poorly. He is angry all the time and very combative, and his dementia seems pretty moderate to severe. He still knows who I and my husband are, but trying to have a conversation with him is pointless. He seldom eats, and has lost a lot of weight, but he is still pretty strong and spry and often swipes at and hits those who try to help him. He is just very mean and very unpleasant to be around. NOTHING makes him happy. Nothing. We have tried everything that we could think of for the past year to make him as comfortable and happy as we can. He is on a puree diet (doctor's orders - not mine). I have a couple of older aunts who are about 10-12 years younger than he is. One is his sister, and the other is his sister-in-law (her husband - my uncle - is now deceased). Anyway, all they do is gossip about me. I think they are basically accusing me of "starving" my dad. My aunt (his sister) will go and visit him when I and my husband are not there and claim that he "begs" for water or bread when she is around, and that I and the home are "starving" him so he will hurry up and die. He doesn't typically ask for those things when we are around, so I don't know what the deal is when she is around. Usually he pushes us away and slaps our hands when we try to feed him or give him his favorite milk shakes. She says he doesn't want to eat that puree "crap" they give him. The home has assured me on more than one occasion that the food they give my dad is the same they give the other residents - it has just been pureed. I know my dad well enough and he is EXTREMELY PICKY and I know that if -under usual circumstances - the food does not look appealing, he would not eat it. So I wonder if despite the fact that he has pretty bad dementia, that he can still see and recognize that the food looks unappealing and refuse to eat it? He can't eat solid food, and he often throws up after eating. I think maybe her mind is getting bad - her and his sister-in-law. And get this: she told people that the last home he was in was giving him "shock therapy". That almost sounds hysterically funny, but it really makes me so angry. How absurd. She apparently saw a lift one day that the home used to get him out of bed and she saw ear muffs and she told everyone that she had visited him and seen a shock therapy machine and that we had "destroyed his mind" with shock treatment. Any comments, anyone?
The aide that worked the most with him - he actually spat at her in anger. My husband gave him a "talking to" FIL thought it was funny that she was upset.
A nasty, mean, loud fellow, he became a bit of a folk hero to the other male residents. Nothing like FIL yelling "I DO NOT WANT TO GET UP" to make the others feel they had a voice, even if it was coming from the other room.
He was unruly and unmanageable - the staff deserved halos. He jumped, legless (!) to his death one day. If he was in the bed, he wanted out (unless they wanted him out) Once in the geri chair, he wanted back in bed. One day an aide left him for just a second and he jumped from his geri chair to his bed. The bed was low to the ground to prevent him from banging his head when he would attempt to get out on his own. So he fell pretty hard. He tore a hole in his intestine and the surgeons refused to patch him up based on high infection rate and his chart detailing his aggression and his dementia.
He was placed on hospice, unable to eat anything but clear fluids, and passed away 11 days later.
He always said "NO ONE tells me what to do" that was his motto through life.
He did have a clear 45 minutes a few days before he died. A small nursing home word spread quickly that he was awake and in his head. The staff all came in to see him and he thanked all of them and kept saying "these are good people, these are good people".
The staff had put up with so much. I used to fear that one morning we would wake up and find him on the porch. It would have been hard to blame them for returning him. They never wondered why he didn't live with family.
Are the aunts close enough to "draft"? Nothing like trying to get someone person to eat to take the wind out of a whiner. Encourage them to bring the foods that your Dad will like --- after they try their best to get him to eat for 2 hrs they won't have much to say to you...or they WILL get him to eat (yeah!) and it might give the staff ideas to work with. Heck, if they can get him to keep down BBQ ribs & mashed potatoes, more power to them! He has relatively little to lose at this point, right?
(ps - chocolate ice cream -- good stuff! Hagen Das has 230 calories for a tiny cup. Not as healthy as "nutrition shake" or whatever, but the food does NO good until it's inside him). Anti-emetics & appetite stimulents maybe?
I wouldn't want to eat that puree crap, either. And my husband tried it for several weeks and got terribly depressed. We decided he'd rather risk choking or aspirating and eat real food. With his doctor's blessing that is what we did. Naturally he wasn't eating rare steak but he did fine with macaroni and cheese. The decision of what to feed him is a medical one. It is not as if you made up the diet for him! I am glad to hear that you give him special milkshakes. Again, ignore your aunts and share what is really going on with other family members.
If Dad is eligible for Hospice care, I think you will find their participation very helpful.
When I started helping father caregive with mom, I always updated my siblings on everything..first by regular mail. Then when I got a computer, I emailed them. Then I finally got a mobile phone (sis gave me her old phone) and text to them. So, they were always aware of mom and father's progress. Nothing was a surprise for them. Too bad I didn't have a facebook. Then when mom had died, relatives would have known that I was the one who was caring for mom and not my oldest brother. He got praised by a lot of people for caring for mom all these years. No one even knew who I was (his sister, my parents' caregivers).
We have heard ridiculous claims about their care and their finances. One BIL claimed cash was missing from the IL's home. Supposedly this cash was hidden in the house. He started saying that a "couple of thousand dollars was missing" I thought that was bad enough, but he didn't stop there. When we were cleaning out their house, BIL told one of the neighbors that $200,000. was missing!
I wondered if the neighbor felt he was being accused as he had helped the ILs and had been inside their home many times. I hope not. When he came and told my husband what BIL had said, my husband told him that we didn't believe any money was missing.
In regards to puréed food. I think if someone puréed it down to baby food that would be pretty distasteful. The SNF's puréed is more like thick mashed potatoes in texture. One of the hospitals did a really nice job by using molds. The puréed corn was shaped like corn on the cob. Peaches were molded into peach slices- really made for an appealing plate.
MIL hasn't complained about puréed and FIL never did either - maybe it just has to be done correctly?
Yes, childofvet, it's not you, that aunt is a few bricks shy of a full load. It is irrational thinking at its best, and wishful thinking at its worst. Shock therapy for severe depression is still occasionally practiced, but the high risk of memory impairment makes it a last resort kind of a thing in most cases. You could try finding pictures of an actual shock therapy setting, which would look very different, but that might backfire.
Now I have seen pureed catfish and I would not want to eat that, but puddings, applesuce, potatoes, shaped puree foods, mac and cheese might all work. You can live on Ensure and Boost if you have to. If there is a remedy for the lack of appetite, he might not need hospice; since he can't be counted on to verbalize it, it is very possible that he has either pain or nausea with swallowing. Pain makes people very cranky or crankier, and I don't know why but lots and lots of people will just say "not hungry" rather than admit they have bad heartburn...we often treat for that just empirically and things often improve. Either Facebook or Caring bridge could be of help I think, and I wish you well!
Call Adult Protective Services and see if they will investigate the care facility. That will show that you have taken steps to ensure he is being fed. Also, when my Grandmother stopped eating, we didn't force her, and she died shortly after. I have heard from friends that it has happened in their families as well. Maybe you should talk to your Dad to find out his wishes. If he doesn't want to be force fed, it may be his time to go to Heaven. I wish you luck. You are in a very difficult position. I'm so sorry.
I suggest you tell the facility to ban your Aunts' from visiting your Dad until the issue is resolved. Considering the way they are acting. maybe they are the ones who have dementia!
See All Answers