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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?

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Oops...i didn't meant to repeat myself in the same paragraph! It must be bedtime...:)
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Thanks to all who commented. : )

Right now, I have to worry about his stump revision surgery. I will not waste any time thinking and worrying about gossipy ladies with nothing else better to do. I hate to say this, but from the way they talk, it almost sounds as if THEY need to be in a home. Really. I do not wish that on anyone, but these two women are headed that way. It is just hurtful to have people who barely visit my father even though the live close to him criticize my husband and myself. It tells us that they don't think too highly of us to begin with. Well, they are definitely not perfect and have far worse problems than we have, but I have never criticized them. Keep in mind that there is a big age difference between us. I am 42 and they are all in their 70's and my dad is in his 80's. That could have something to do with it in my opinion.

I have asked several times if my dad can have solid food, and the nurses all said that he cannot. That answers that question. That is the doc's decision - not mine. I noticed that they even put some kind of thickener in his drink. He has dysphagia among many other health problems. He has been treated for that in the past, but for the past couple of months he has been on a puree only diet. I was told that he is at risk for aspiration. I have asked several times about solid food, and once again I was told he can have puree only. That answers that question.
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Put your dad on a visitor restriction. Keep those women away and then focus on your dad.
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I know you have probably tried antidepressants or antipsychotics already, but in case you haven't, they can work wonders.
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I don't know,how you can be accused of starving him when he is in a living care facility. It is their job to make sure he eats, not you. That is SO RIDICULOUS! I assist my Mom, and my brother is a jerk, so I know how it feels when you are wrongly accused. He called Adult Protective Services on me twice (after I filed a Temporary Restraining Order -- because he assaulted me and I ended up getting a concussion, hurt me neck and back. Thankfully the TRO was granted and and he was removed from the house.

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!
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Just back from SNF, dealing with exact food issue. Dementia, picky eater. Doesn't eat meat, so of course it was puree chicken. Urgh. Spit out everything, but LAUNCHED the chicken LOL.

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?
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childofvet,

I mentioned hospice in another post to you and I can't tell you how helpful and wonderful hospice was when my dad had it. Unfortunately, his Dr. refused to sign off on hospice until my dad was pretty far gone and unfortunately my dad was unable to appreciate some of the services our hospice provided. They had a chaplain who was a military buff and he has collections of all kinds of military stuff and that's something my dad would have really enjoyed had we been allowed to hire hospice earlier. And being a military buff, this man thought it would be nice for my dad and his family to have a 'Recognition Ceremony' in honor of my dad's service. But again, we weren't allowed to have hospice until it was almost too late and by the time they came into the picture my dad was unable to participate or appreciate anything anymore. Another hospice volunteer had this adorable dog she'd bring around and it did the cutest tricks. The hospice aides who came to see my dad would give him a nice, warm, soapy shave (he was barely conscious) but my dad would have LOVED the attention.

As for OUR experience with them, they were amazing. We knew my dad was dying, he was heavily medicated and there were a few times when I was particularly upset, just at the whole situation. Hospice had told us we could call them 24/7 and I did and I spoke with the most wonderful and understanding nurses who stayed on the phone with me as long as I needed. The hospice nurses also took charge of my dad's medication and listened to our concerns regarding medication and acted accordingly. They became our advocate, intervening on our behalf with the staff at the facility and I can't express to you how this lightened our load. They kept in touch with us at all times and when I was having a problem getting out of work to be with my dad (he was in the process of dying) the hospice nurse offered to call my boss. I didn't take her up on it but it was so nice just to know she would have done that for me.

Personal feelings about hospice aside, it's a wonderful service and it doesn't necessarily mean that you're dad is in the process of dying. Usually hospice is enlisted when the Dr. thinks the patient (your dad) has less than a year to live. It's a supplement to the care your dad's already receiving at the facility. And while your dad is only one among many at the facility and has to wait in line like everyone else for his food or his meds or his shower, when you hire hospice and they're there with your dad he is their only patient and their entire time is devoted to him and his needs. As your dad begins to deteriorate hospice acts accordingly with more visits and/or more contact with you.

My professional experience with hospice has been just as positive. I work in the healthcare field and I have had hospice patients. I trained especially for hospice cases and learned everything there was to know about working with hospice patients. People who work only hospice are not only professionals but they see their job as a member of a hospice team as an avocation, a calling. They are experts in medication and while some people think hospice does nothing but drug people that just isn't so and is a misconception that makes me mad. If anyone can strike a balance with your dad between too sedated and too combative it's hospice. They will work on it, trying different dosages, different times, etc. Their goal will be to make sure that your dad is comfortable. Now, in nursing home speak "comfortable" sometimes conjures up images of people drugged into unconsciousness but to hospice, "comfortable" means that your dad is comfortable. Not sedated into oblivion, not angry and combative, but somewhere in the middle. Nursing home staff don't have the time or the power to do this, as I said, your dad is just one of their dozens of patients. To hospice, your dad is the only patient.

Medicare covers hospice even if your dad is on Medicaid. My dad was on Medicare, Medicare dropped my dad, we applied for Medicaid but Medicare still covered hospital visits and hospice. And our hospice told us that if for some reason Medicare wouldn't cover them, they'd offer their service for free. Hospice is made up of people who believe in what they do.

As for those couple of magpie aunts of yours, to hell with them. When I told my aunt that my dad had stopped eating she screeched at me, "Well, he needs a feeding tube!" They're busybodies. They're bored. Your dad's situation gives them something to tsk tsk about. You know your dad didn't receive shock therapy, what a ridiculous thing for them to say. They're crones and you don't need that stress right now.

I'm sorry this is so long, especially since I wrote you on the other thread but I just can't say enough good things about hospice. My dad was dying and hospice got me through it. Plus, they offer free grief counseling which I'm going to take advantage of as soon as I'm not too depressed to go. :-)

You hang in there, childofvet.
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Do you have your Dad's POA? If so, you can ban them from seeing him. Your family sounds as toxic as mine. Good luck!
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Where to start...

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!
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I did not know this until mom died, but my oldest bro of next door and his wife have been Actively telling people that they are taking care of mom. Hence, at mom's nightly Mass of Intentions at church, people were offering their condolences and praising them. They were also praising them to my other siblings - who were shocked when it happened the first time. Then they got angry that people were praising bro & SIL and no one even knew about me. You see bro and SIL helps Everybody but me and the parents. My angry siblings went on a campaign and started praising me the following nights as my parents caregivers. When I firts found this site, I was seriously suicidal because I was taking care of 2 bedridden parents with No Help from bro and his wife and 3 grown children living next door. Father gave bro the land next door, he built a house (renting it out) and a 2-story duplex (renting one unit out). When mom died, SIL's work mentioned that SIL's mom died. At the funeral, most people gave bro and SIL the bereavement money directly. When given directly, you keep the money. I know of at least 2 people who gave them $1000.00 each to my brother. He used that money to buy himself and his grown up son a $2000.00 tickets to travel to the states the following month. And that is only from 2 people. Who knows how much he actually received. No one is talking. And they never will....And you know something else? When father dies, I will Not be surprised that people will praise them for caring for father. My brother who lives next door RARELY visited when mom is alive. When he did, he walks in the house and doesn't even look at her. Yet they took very good care of mom! Ha! I try not to let it dwell in my mind. As you can see, it still bothers me a lot. I had plans of moving away when mom died. After the funeral, I changed my mind. If I leave, bro of next door will move in, rent his whole unit out and try to claim my dad's house/land as his because...he took care of father! So, I'm staying. When the time comes, and if my other brothers decide that I deserve the house/land for helping caregive 25 years of my life - I will sell it and move away. Oldest bro knows this. He already told me to sell the land to him.... I think having a Facebook and just putting general info on your father would help people know what's truly happening.
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My FIL passed away last June- he sounded a lot like your dad. He was a double amputee (both legs above the knee) and had never been a pleasant man. A long time alcoholic, his children did not have pleasant childhoods, quite the opposite. Dementia made him a terror. I was always nervous if I was close enough for him to touch me- he hurt several aides- one of the aides he hit with the big metal triangle that hung above his bed to allow him to adjust his position in bed. Of course they removed it after he used it for a weapon. He was very strong. He liked to threaten the aides if they refused his requests to "check his bottom" - he was a sexual handful in addition to his physical violence. He would threaten to report them to their boss if they didnt comply. He threatened me the same way when I rebuffed his sexual advances. I told him to go ahead and report me (bravely standing by the doorway).

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.
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OncehatedDIL, thank you for your comment/insight. It is extremely hurtful and insulting to me to think that relatives that I pretty much trusted (used to, anyway) and give the benefit of the doubt to could have such a LOW OPINION of myself and my husband - even after all that we have done for my dad. They are not even aware of half the things we have done for him. It is nonstop...ongoing. The home calls often to report that is gotten out of bed, etc, so he is a difficult patient to say the least. So we get lots of phone calls about him. He has literally been in and out of the hospital NUMEROUS times, and had many procedures done for various ailments. I think the aunt may be a little "off"...I just don't know. And the one who refuses to believe US and believes the aunt who told this story believes her instead of us - even after us trying to explain things to her. She keeps insisting that his mind was "sharp" last year ...last year it was better but it was obvious to the docs and nursing home that he had dementia. She can't accept that. She blames us for his being in the shape he is in. I give up on them. People will believe what they want to - even when the facts that prove otherwise are staring them in the face.
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childofvet, I could go on and one about ridiculous statements by family members concerning my ILs- why some people feel they have to invent stuff is beyond me. Maybe they like the attention they get with their wild stories. At times I find it difficult to ignore because it feels like a personal attack since we are responsible for care and finances.

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?
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Sadly, I do not communicate with my brother and my half-siblings (my father's step-children). THEY RARELY VISIT HIM! Up until recently, those two older aunts were the only real contacts I had to spread the word. I don't know if they are for or against me in our family's squabble...that's hard to say. There was nothing much to fight over, really - it is just about "control" for some people (mainly my two older half-sisters who blame our parents for their miserable lives).

I know for a fact that my husband and I have taken as good a care of my dad as was humanly possible. We have done everything we can for him. He has not been denied anything. I think my two older aunts' minds are getting a little "bad", too, and I hate to say that because it sounds mean, but I am pointing out the obvious. They are both in their 70's.

The most disturbing thing to me is that one accused me of allowing my dad to have "shock therapy" in a nursing home. She claims she visited him ONCE at another nursing home that he was in previously and that she saw with her own eyes a "machine" used for shock therapy. Of course my husband and I knew that was one of the most absurd things we have ever heard of, but we asked a CNA who we trusted what that machine that she described to us could have been, and he showed us what "machines" they had which were actually different kinds of LIFTS used to get the patients out of bed. She claims she also saw EAR MUFFS on that machine, but my dad is hard of hearing and no doubt they had those in the room to speak to him (he can hear much better with a voice amplifier). She told another aunt and who know who else. I can only imagine. I tried to EXPLAIN to both women that it was a lift and that dad has DEMENTIA and there is no way on earth that any such a thing (shock therapy) could ever happen, BUT - get his - both just would not believe me. That was so insulting. Even my husband was furious with her. He asked her why she did not take a picture of it or report this (inquire about it), but she had no answer for that (claims she did not have a camera on her cell phone, which she may not have). She thinks that I either signed a consent form to give him shock therapy OR that the nursing home was doing it behind my back and without my knowledge. She INSISTS on this,

The reason she thinks this is because she has an older sister (also my aunt) who lives in another state. This aunt is now in a nursing home. She had 4 or her 5 children DIE (automobile accident-related deaths) and suffers from severe depression. So the only remaining child of this aunt (her daughter) signed a consent form to allow her mother to have shock therapy. This sounds too incredible to believe, but I guess the depression was so severe. I guess the point of that treatment was so she would forget those tragedies. I really don't understand the reasoning and the whole situation because I am not close with them, but the point is that my aunt thinks I did this for my dad. I told her that I believed that nursing homes don't do this treatment anyway - mental hospitals do. Yet she insists. Does this sound crazy or what? Any takers?
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Bookluvr, and your brother never corrected this misunderstanding? Says alot about his character. People are funny. Sooner or later they show you who they really are. And you are good people. :)
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If you haven't been doing so, I agree with Jeannegibbs. Perhaps now is the time to start updating the family on your father's "progress" by text, email or FaceBook. If you let people know what's happening, your aunts words will fall on deaf ears.

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).
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Do the other family members believe her? If they are aware of her propensity to exaggerate or misinterpret what she sees and just brush her off, then I think you can safely ignore her. If there is risk that others might take her seriously, you might want to communicate Dad's status and progress to them periodically.

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.
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