It's been a while since I posted here. I cared for FIL for three months at home. He had so many additional health problems that he was finally hospitalised five weeks ago in the Dementia ward. He was extremely difficult to care for at home. In fact, towards the end, my husband and I were becoming ill ourselves. We have been told by the health professionals, social workers and professional carers that he needs 24 hour medical supervision which he can only get in a nursing home. He has been classified as needing "high care". After being told that keeping him at home is actually detrimental to him, we have finally put him on the waiting list for a very nice home nearby. We will be visiting him every day and still intend to be heavily involved in his every day life. I am still feeling guilty, however, since we promised to keep him at home. I don't know how to to tell him that he will be going to a home . Has anyone else had to deal with this? He will remain in hospital until it's time to move to the nursing home. Do i simply tell him he is going to another hospital closer to home? I feel the truth will only upset him and he seems to be confused about where he is sometimes anyway. Any suggestions would be helpful.
Last edited by rosariared; 10-30-2007 at 04:37 PM.
Reason: Grammatical error
Having gone thru this with my mother, I suggest you merely tell him he is going to a facility to help him get stronger. Otherwise, he will have a very hard time adjusting to never going home. It's one of the most difficult things to do, but if it were me in dementia or a stroke victim, etc, I would not want to be a burden on my family.
It did seem every time I went to see my mom, she asked when she was coming home and I had to evade answering. I did bring her home from time to time, but it was just that much harder for her to go back. Then she got to weak to climb stairs, so couldn't go home anyway.
It seems you have an ideal facility nearby, so I hope you can let go of the guilt and just remind yourself it's the best for him. My heart goes out to you...Patty
I agree with hypatia. Tell your FIL that he is going to a rehab facility or another hospital. I wish I could have done that when we moved Dad into Assited Living. Even when he visits my sister, where he went often and his van is there, he wants to go back home. Yet I know in my heart that we did what was best for Mom and Dad.... and they are exactly where they need to be.
After a year of guessing and a year of trying to keep them at home after Mom's diagnosis I have health problem that I am trying to correct now. Keeping your loved one at home can definitely effect your health.
As for the promise you made to him..... that was made when he was healthier. I do not think he would want his son and you to give up so much of yourself and your life when you can find good placement for him. Many older individuals think of the horrible nursing homes of the past. My mom was that way until she visited her assisted living facility. She went from insisting that she would never go to agreeing to go. She thinks it's a hotel.
So at this point you have to use your best judgement, listen to the experts, and leave the guilt behind. One of the wonderful members of the board said it so eloquently. It is time to place your love one in a home when the caregiver is ready. Nobody wants to go to a home.... nobody wants to have dementia or health problems that make it nessary. Know you are doing what is best for you and him.
I was in the same dilemma with my in-laws ... and talk about GUILT !!!
Having looked after them both for 2 years,it finally came to the stage where I was falling apart, physically and mentally. My FIL was permanently placed in a private hospital (not a nursing home, a hospital) but knew from the onset that unless he improved A HECK OF A LOT, he would't be coming home. This didn't sit well with him, and he continually asked me if he could come home. I had my hands full with my MIL who has dementia (FIL was FINE mentally, but had lung disease). I remember being called into the Nursing Unit Manager's office, and having a good talking to. I was told that I knew the entire situation was out of control and that for FIL's own good, he had to go to a nursing home. FAct being, he couldn't stay indefinately at the hospital .. they needed the beds for 'sick' people, not 'chronic disease' people.
So the day dawned, and they spoke to him about his now very limited options. He looked at me with those big blue eyes, and said "Can't I come home?" It broke my heart, and all I could do was shake my head 'no'. I did manage to say a little while later "I can nurse one person well, or two people badly" and he finally, sadly, understood and went with grace to a nursing home.
MIL on the other hand ...... *sigh* ......... ACAT took over for me. Respite was organised at a top of the line nursing home with the promise that she would basically never come home. We gently told her she was going on a holiday, but I KNEW she didn't understand, however everybody else thought she did, and everybody else thought she was great with the idea (just a holiday idea, not the ever after idea).
EVERYBODY, the professionals and the rest of the family all nodded knowingly and said "Yes, she's OK with that, she's seen Dad in the nursing home and she knows, she's ok"
I however, knew darn well that she said yes if spoken to in the right tones (gentle, smiling) and I KNEW she didn't 'get it'.
So ....... other people picked her up from day care, other people took her to this nursing home, and since I had already decorated her room with pictures, and unpacked her bag and gotten everything ready (I couldn't BE there when they dropped her off) .... and they rang me and said "everything went fine, she's very happy"
Until 7am the next morning, when the nursing home rang me and said "OMG, she can't stay here, she's uncontrollable!!!!!!!!!!!!!!!!!!"
Anyway, I had to put my foot down, and yes, they managed to find her a brilliant nursing home and guess what ..........
within 2 days of being there, she calmed down and never looked back.
What calmed her down? Her limited options. The fancy nursing home had too many options, the 2nd not so fancy one didn't.
2 days. Brilliant.
My story doesn't help you 'how' to tell your FIL, but just gives you an idea of the concept of 'how'.
I wish you luck, it's the worst time ... :-( I'm sorry.
We all want to do what is best for the loved one with Dementia. Often - almost always by the later stages - a Nursing Home is the best answer.
You have to become the parent as your elderly parent becomes more and more childlike. You don't explain to him that you think he might have to go into a nursing home and ask for his agreement. You say to him, on Monday we are moving you to your new room (apartment, home, whatever it is) . You will taken care of there until you are well again.
No matter what protests you get, no matter what he or she says to you, threatens to do or even throws a tantrum, you round up enough helpers, and remove him and his stuff (usually the belongings can be brought in later) to his new home. Stress that it is temporary. Blame it on the doctor. Tell him he won't get Medicare unless he does what this doctor demands. Just get him in there. Then you can keep on reassuring him, as long as he keeps asking (it may be days, months or years) "you will go home as soon as the doctor says you are well again."
Sooner or later the patient adjusts and feels at home in his new environment. There he or she gets the ultimate good care. Why guilt? You did the absolute best thing! If you ever 'promised' not to allow him to live in a NH, that was well before you had any clue what Alzheimer's Disease would do to him. He himself, if in his right mind, would urge you to get him into 24/7 care so that YOU can have a life again ...
These thoughts are based on my own experience with my Mom...
If he forgets from one min to the next don't tell him anything unless he is still remembering things then just make it simple or as little as possible. As others have said (and what we told my dad)... Tell him that he is going to a rehab unit to learn how to take care of yourself. In my dad's case we told him when he could walk on his own he could come home because mom could not care for him unless he could walk. He understood that part of things even though he didn't want to go we always gave him the encouragement and hope of coming home. Try not to feel guilty about it all...no one could predict how disease of any kind would or could make it impossible for one person to care for someone to the end. Good luck to you.
I am so glad I found this board! Finally, some people who understand what I'm going through!
We had to move my Dad into assisted living in April, and he absolutely hates it.
Angel_Bear, your point about there being too many options at your MIL's first home was something I've never considered. My Dad's place is a lot like a hotel, and there are 165 people there, tons of "activities" and menu choices and such. Perhaps he is overwhelmed! Eureka! It makes sense, now that I think about it. I wonder if he would do better at a smaller board-and-care type place.
When he first got there he was very involved, but as the months have gone by and his disease has progressed, he is now afraid to even leave his room. A lot of the other residents wave to him and call him by name and he never knows who any of them are. How awkward that must be, for a man who was once so outgoing- a salesman at heart- to become a frightened little boy.
It is breaking my heart to have to keep telling him that he is home. Next time I am going to tell him that he can "go home" when he is all better, and see if that will appease him at all. *sigh*
That's the thing that usually sets the AD person off at home. So many choices !!! Just think about it .....
A) get out of bed. Exactly what is involved in getting out of bed? What's OUT there? What will happen if I get out of bed? Is there anything on the floor? Safer to stay in bed.
b) Get dressed. My goodness, look at all these clothes! Perhaps I should put them all on! No, wait, that's wrong, I won't wear any! Oh darn, better be safe and keep on yesterday's clothes. I know that was right.
c) Breakfast. Oh lordy, lordy, lordy ... I know the fridge has something to do with it. Then there's something about a cupboard, is that white thing a cupboard? Must be. Oh I don't know what to eat, there's stuff there, there and there. I'll eat this stuff, it looks eaten before, so it must be safe (potential poisoning from old food). Actually - eating is the biggest, scariest thing for them. They can no longer comprehend exactly what is for what and when and why, so it all get's jumbled, and then they just give up trying to eat because it's just too much!
See what I mean? And your only in the first 5 minutes of their day.
At least in a SAFE, SECURE Nursing home they have somebody come in and assist them in hygiene & showering. Food is handed to them, they eat it. Clothes are handed to them. They dress in it. Options taken away, no more panic. (Unless your dealing with a paranoid AD, then it's an entirely different ballgame, they WANT choices, but don't know what to do with them).
Activities for AD should be calming, soothing and repetitive. I played with a gentleman the other day who was SEVERELY agitated (he was also having a hypoglycaemic attack), so I picked up a ball and threw it at him (gently). He caught it (much to my surprise!!) and tossed it back to me. We only played for a few minutes, but IT SETTLED HIM DOWN enough that he could eat some dinner and feel better. Less choices = calmer patient.
I hear of many nursing homes who spout all these wonderful activities and I think sometimes, they should spout how calming their influence is, music played (baroque being the best type), are there calming pets? Dopey cuddly dogs and cats? Fish tanks? Jumpy birds are not advisable either.
*sigh* ..... so much to write, so little time. LOL
We're having quite the dilemma here about the nursing home situation. My grandmother had been in a nice assisted living facility that she hated, so my husband and I built an extension onto our house for her and moved her in with us, which was fine for months until her AD turned worse. Right now she's in a rehab facility paid for by Medicare and her private insurance but I understand her income is too high for Medicaid -- but she'd have to pay about double what she earns monthly for a placement in a good AD care place around here. With two kids in college, there's no way my husband and I can make up the difference.
So we don't really seem to have any choice but to take her home, which scares me, as she has now started to become paranoid, delusional and even violent (which is how she ended up in the hospital and then the rehab center). These last two weeks I've felt like my brain is about to explode! Aside from asking my sister to check into pricing in nursing homes in Florida, where she lives (which might be lower than in the Northeast) about all I can do is hope the AD drugs she's now on (which she never took before) buy us some time.
Welcome to the Board. I'm sorry you are having this problem. In my opinion, professional placement is better than home care, especially as the AD patient gets into harder to manage stages.
My Mom was in similar positin. At first she was in Rehab for a broken hip, which Medicare paid. Then when her dementia became obvious and she was not able to make progress in Rehab, Medicare dropped her. She was moved to the long term residential building, and used up her life's savings to stay there 3 months. The NH advised us to apply for Medicaid, as soon as Medicare stopped paying ..that was in December 05. We used a good Elderlawyer, and it worked. Medicaid took over in April 06. Mom's social security was only about 1/10 of what the NH costs monthly! Now Mom has been there for another year and a half, paid for by Medicaid. She was allowed to prepay her funeral out of her existing funds, and the lawyer's fees, and as soon as her assetts were down to $1,200, Medicaid took over. The NH also takes all of her social security minus a small personal allowance. This was in NY State. The rules differ in each state. But the thing is, you have to apply before her assetts run out, then you are kept on a sort of waiting list while she 'spends down' the rest.
The NH cannot kick her out while on this waiting list. The children or other relatives are not required to use their own money for any of this.
We also thought we would have to take Mom back home, and it caused a lot of friction in the family - she is in a wheelchair and incontinent, so she cannot be in a house with stairs, and needs around the clock care.
I hope you can manage to get your grandmother on Medicaid - my Mom gets the same good care as she did when paying her own way.
Costs For ALF's designated for the "memory impaired" in Florida (South Florida anyway) are HALF the cost of those in the NE area. My daughter is managing the affairs of her father (my ex) and priced care in New Jersey.
We were dumbfounded at the costs there compared to the cost of the excellent care my husband is receiving in a small (40 person) residence in the Ft. Lauderdale area.
Please look into this option before you think of returning her to your home.
Oh, and by the way, welcome to the board.
Martha, thanks for the welcome, and also for the reply.
My grandmother's problem isn't assets -- it's income. Not only does she get Social Security, but her second husband was pretty successful and left her with a healthy pension, which was enough to afford the assisted living she was in and still have some left over for taxes, bottled water, chocolate, etc. Thing is, that was before the AD diagnosis (which is recent). So she has an income that will continue until she dies, and that disqualifies her for Medicaid. It also, though, isn't enough to actually pay for the rehab facility/nursing home she's currently in (cost is $7500 a month, yikes!).
So although I hope I can find a place willing to negotiate -- I mean, I'm sure Medicaid pays them less than $7500 a month -- we might be forced into a cycle of bringing her home until she requires hospital care (last time for not taking her heart meds for days, no matter what wheedling and arguing we tried) which then leads to a stay in rehab that's covered.
I can't help feeling really guilty about all of this, though. Until two weeks ago she was forgetful and a little dotty but otherwise happy and doing well in the family. I cooked meals for her and cleaned up her room, but aside from that she took care of her own basic needs (getting dressed, going to the bathroom). So although my sister is dead set against me taking her home again (for my sake, my sister says Nana will end up killing me) I can't help but want to try at least once more before I give up. The hospital found a bad UTI and they think this is what triggered the worsening of her symptoms, and with the new meds they just started her on I'm still hoping for improvement.
However, the more I read about this disease, the less hopeful I am. I do see that she will eventually need fulltime care in a facility, but in the meanwhile she still does mostly know who I am and where she is and I just want her to be as happy and comfortable as possible for however long she has left (she's 92 and our whole family lives into their 90s).
Sorry if I'm rambling...this is all still very new to me. I knew she had mild AD but now that I've seen the paranoia, delusions and rage I can't deny it to myself anymore.
I do understand your delima Dingo and if not for Mom's Long Term Care policy we would be in exactly your same situation. As for the facility cost.... When we were checking facilities for placement of Mom and Dad I talked to a friend in Mass. He was also checking facilities for placement of his Mom at the same time. We happened to check the same facility (same company different state) and found that the cost of his Mom's placement in Mass was slightly more than the cost here in NC for Mom and Dad.
Dad swore he was never going to a "home" and Mom would just say, "Dad won't go.", when we knew she did not want to go either. We tried hard for a year to keep Mom and Dad at home. I carried much of the burden since my other three sisters were working. It did affect my health and well being. It also cause much striff amoung the sisters. The day we moved them into assisted living there was a collective sigh of relief.
Also don't expect the Alzheimer medication to "improve" your Mom. Treatment of the UTI might make her better but the ALZ medications at best holds her where she is longer and slows the progression. They are not a miracle cure. I hope the UTI treatment does help her.