Sunday, June 12, 2011 Karen M asks

Q: Dad unhappy in nursing home.

Mom sort of snuck dad into a nursing home last year. Dad has Parkinsons and Parkinson related dementia. His mind is pretty much him but he does have delusions. He sees men in the trees near the nursing home -- usually trimming the trees. Stuff like that -- it sounds worse than I think it is. I think mom built up his dementia to some degree so the family is amazed that dad is still somewhat "with it". He remembers his past -- he knows people --- he even knows the names or a description of some of the new people at the nursing home. Dad's life was his tools, his work, puttering around the house, drinking beer, now eating sweets is a pleasure for him too. Mom made a lot of the "plans" sometimes dad rode along or elected to stay home to do some work around the house --- towards the end he wasnt accomplishing much but he was happy --- or my mom would hover and get sucked into doing the things dad wanted. Sometimes this was due to her ignoring his desire of a project thinking he would forget --- and he didnt. So then it was do it now or else.

The nursing home he is in -- all the staff are pretty nice --- they do a decent job of maintaining him and all but thats about it. There are activities for those motivated to go to them -- and those who have adjusted to living there -- and those who can read the calendar and remember to ask. Dad sometimes attends some of the activities -- they were engaging him before I dont know if hes regularly getting to any activities now. They had him on an ambulation program to walk him a couple times a day --- when I inquired I found out some staff didnt even know he could walk. So it seems they kind of "quit" the program without even notifying the family. They have reviews -- every quarter --- for a big 15 minutes. I/we missed the last few -- my mom was being notified -- she passed two months ago. We missed one because she was sick or something and was supposed to reschedule and the last one I missed in the wake of activity during and after her funeral -- and trying to consolidate apartments down to one (both mom and I were renting).

Bottom line -- Dad wants to come home ... yesterday I took him out -- we had a party at an uncles --- he seemed to enjoy all that. Once we headed back to the nursing home he decided he didnt want to go back and wanted to go home --- this has happened before but not to this extreme --- he didnt want to get out of the car ... I gave him some time then went back to the car to see if he would go inside ... i finally got a nurse to tag team me --- dad then got in the wheelchair and went inside ... but once he and i were in the elevator he said to me "what is this s--t?"

Im thinking of investigating the VA soldiers home --- dad would be eligible or should be ... they used to have a bad reputation but I hear they have improved and can certainly investigate. Im thinking/hoping it may be a more active place with a lot of guys that led similar lives to dad -- i think dad would much enjoy "shooting the breeze" with those guys and hopefully theyve got more "guy related" activities for him. Ive got the application so I need to fill that out and check the place out just to get things moving if that be our choice ...

Ive also found some internet site that helps you find elder services in your area --- so I figure it wont hurt to see what they also have to offer ... Supposedly medicaid will pay for people to come to your home --- I dont think dad would be able to be alone for long if at all and Im not sure Im willing to be there all the time ... right now Im laid off but I do need to get back to work if/when possible --- at least part time...

So how do I talk to dad about all of this? He has been obsessive about the money --- we cant afford both "apartments" - by that he means the nursing home and his apartment at home -- the one mom was living in ... sometimes its a "camper" or some such ... If I find the soldiers home or some other facility more "active" do I just do it say hey dad here we go? or do I involve him in the decision ...

How do I answer him when he says he wants to go home? I guess that is the hardest thing to answer ...

I could white lie and say I have to go to work as I plan to work again --- so there would be no one here for him ...

Sometimes he thinks that standing and getting his bearings is the biggest deal physically --- he sometimes thinks he can do and does more for himself than he is doing... he thinks once he stands he can walk to egypt ... i think he believes he can get up and down stairs now --- I'd be happy if he could walk at all --- but its crucial for him to be able to transfer so that I can get him out sometimes ... but getting out poses some emotional hardships for him --- in going back to the home.

He was much better when he went to the nursing facility last summer --- now he may not be able to walk --- he can still transfer ...

Any thoughts or help I'll leave it at this for now ....

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Answers (6)

Dorian Martin, Health Guide

6/15/11 12:03pm

Hi, Karen,

Thainks for asking these important questions. My mom had Alzheimer's and I faced some similar situations. So here are my thoughts:

- I agree with Nina that your family should be "advocates" to the nursing home. I always went by the motto, "They won't respect what you don't inspect." Therefore, I was very visible and very known to all the staff members at the nursing home, from the director and the nursing surpervisor to the nursing aides and the aid who drove the van to Mom's appointments. If there was an issue, I'd make sure they knew about it. And if they did a good job, I'd praise them.

- I also found that in Mom's case, she could be really with it one day and completely out of it the next. And she'd definitely be "on" if she had an audience, whether it was a family member or a friend. In these cases, friends would be sure that she should not be in a nursing home. They wouldn't see her the next day when she was incapacitated from this mental effort. So I'd suggest that you really get an honest assessment of your father's capabilities if you don't spend time with him on a daily basis.This includes participation in activities. In Mom's case, she no longer had the concentration to participate in the most basic events.

- If I were you, I'd also really explore the VA option. But realize that you really don't want to make a lot of moves with your father, especially as his illnesses progress; additional moves can be very deterimental. My mom had two moves within the nursing home and went downhill both times. Fortunately, she came back up, but some people with dementia died soon after the moves.

- My mom also wanted to leave the nursing home. However, I was not able to provide a level of care at home, especially since she had advanced Chronic Obstructive Pulmonary Disease as well. Although ideally I would have had her at home, I had to be realistic about the skilled nursing that she needed and that I wasn't equipped to provide her. When she told me she wanted to leave, I told her the decision was made by the doctor, which was true. If she pressed the issue, I'd have a compassionate discussion about her health issues, including her memory. She'd always agree with me, but we'd end up having that same conversation regularly. Therefore, know that this conversation is probably going to be a consistent part of your interactions with your dad.

- I think you need to make the primary decision about your dad's care. You can offer him some input but I think his choice is going to be to live at home. You need to really assess whether you really, truly can do this. (I also was working part-time when Mom's issues happened, and even juggling that level of employment with advocating for Mom at the nursing home was really stressful and actually affected my health.) So you need to take into account what this decision is going to do, again being realistic about the consequences.

Take care and keep us posted!

Dorian

6/12/11 1:29pm

I don't know about parkinson. My father-in-law has Alzheimer's. The elders tend to have delusion in the state of dementia. I don't know what you mean that your Mom built up his dementia. Either he has dementia or he does not. It has nothing to do with who builds up what. She probably onyl stopped him or tried to protect him from getting into trouble. No way she can cause his dementia.

Ok, now you seem to want to take him home. First of all dementia will get worse and he now has delusions here and there. It would be 24 hour home care. You need to hire some caregiver at home to help you.

The thing is, in the end, unless he dies from heart attack, you would have more problems and may still want to put him back to the nursing home. You would have another waiting list to send him back and etc.

I understand you seem to try to undo what your Mom should not have done, but it does not stop his dementia. If the home does not know he cannot walk, it is up to the family to visit a lot and tell the nurse/director what he needs. Lots of communications and so on. We had to tell the home to hide my FIL's razor and we had to tell them to use his old walker in the closet. Family is important and you need to be there to alert the staff. Don't just rely on the staff as they have many patients.

Certainly you could try to move him back to your home, but you will need 24 hour home care. I can say for sure one reason your Mom "built up" is due to her stress of caring for him day in and day out. It is lots of work to handle him. You would have trouble to wash him or bathe him as he would not want to wash.

He would treat you as his wife in his delusion and etc. He would get lost and it would very deadly.

My FIL can no longer be at home due to his insanity. Anyway, I hope you will find a way out.

Take care,
Nina

6/12/11 1:47pm

Sorry so you want to move him to this vet home. Well, the more move, the worse it is for the dementia elders. He will still want to go home.

I think it is also the issue of how the staff treats him. He needs to join the activities again and so on. Do they have outings? They should include him more. I think he is lonely now as a widower. My FIL is widower too so it is a problem. However, my FIL loves the ladies in the home given his memory loss. I guess my FIL is sicker than your Dad.

Moving itself is not a good thing because it only confuses him more.

I think the best thing is a home for memory impaired with a good reputation. I don't think the home like vet home or medicaid home is really that good.

Maybe you need to talk to the staff about activites. You don't need to wait for this quarterly report or meetings.. You can bother the staff anytime. It is your right.

Take care,

Nina

Carol Bradley Bursack, Health Guide

6/16/11 10:31am

Hi Karen,

I agree that taking your dad home could backfire. Most likely it will just mean trying to get him into another home soon, which will be hard. I think I'd investigate the veterans home and see if it's really better. If so, play to the fact that he'll have fellow veterans to have fellowship with and give him a choice between the two. Tell him you'll take him over for a tour. I wouldn't even give the "home" a mention. You can tell him that the best care is either the nursing home where he now lives or the veterans home (if you think it's suitable). Having a choice may help him. I would avoid too many moves, as that generally does make dementia worse.

Carol

Distressed Daughter

7/ 6/12 1:57am

Hi Karen, thank you for posting this as I am in a very similar situation. My father has the lewy body dementia due to Parkinson's. It is really difficult to deal with this type of dementia it progresses rapidly. The hallucinations are common but as you said nothing terrible. My dad sees people too but knows they are not real. This is typical. The worst part of it is that sometimes he seems more like his "old" self and somedays he is argumentative and confused. My mom was very adamant about taking him to a home as she had pretty much been his sole primary caretaker for the past few years. I think she felt that it would be her or him, as a lot of us know and have heard, many times the caretaker goes before the patient. My mom had to work full time and although I helped out when I could, living 45 minutes away, going to school and working made it very difficult. My dad is less and less stable on his feet and his speech and rigidity have gotten worse. He already fell once in the shower and dislocated his soldier. He was home alone a lot due to my mom's working and things like adult day care are not available in there are. He's been in the home a couple of weeks and I try to go at least 1-2 a week. Usually I'll bring him things he loves like chocolate, food, things they may not give him inthe home that could be useful to him. It kills me when he asks me "when am I coming home"? My dad never had too many friends, was very close to his family, and loved his work( he was a physician). Unfortunately the Parkinsons has robbed him of many things. I think there was a lot of good advice give here. Definitely be an advocate and make your presence known. Are loved ones are our loved ones and it is our turn to look out for there well beings. I found out my dad was only bathed twice this week and told them that wasn't enough. Most are very nice but they tend to be burnt out and will never see them as the wonderful pple they are. It kills me when my dad asks me to take him home, but as the other reader suggested, this question may always be asked. We are all in a lousy situation and the best decisions need to be made with a clear logical head. I wish I had the resources to keep my dad at home until he could no longer remember anything but that is simply not an option for us. Remember that you're not alone. Pple go through this sort of thing all the time. You will know what to do and try to enjoy him still while you still can. Lots of love and good luck.

Distressed Daughter

7/ 6/12 2:06am

Please excuse my typos.

Carol Bradley Bursack, Health Guide

7/ 6/12 6:46am

Your answer was wonderful and compassionate. We all make plenty of typos - never worry about that!

Thanks so much for your answer.

Carol