Family suddenly taking unwanted interest.

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I am the caregiver for my best friend and lover. I have my own apartment but stay overnight often and practically live with him. He was recently hospitalized for taking medication that caused paranoia and now his adult children are pushing strong for placing him in Assisted Living. Neither I nor his doctor feel this is necessary yet and that he can still live at home as long as he no longer takes that medication. The children live far away but have recently displayed an intense interest in taking over my duties and shutting me out of his care discussions. I feel like he sometimes wants to just give up and go into AL just to appease them. If I thought he needed it I would be all for it but I really don't think he needs it yet. He is not incompetent but they are saying that it will just get worse and they are doing this because they care for him. They are pressuring him and it seems they are beginning to cut me out of his care. I am disabled, myself, and am overwhelmed sometimes but feel we could just use some extra help at home. I am despondent about this. I don't want our life to change nor do I feel it has to and I feel as if the family is taking over where there is no need. He has early onset Parkinson's and is just 63 and every facility we've looked at just seems too "old" for him. I feel he will soon "become old" if he should have to move into one now. I feel like my opinion is not being taken seriously and wonder if I am being pushed out.


I'm sorry you and your partner are going through this. I don't have experience with your situation but I can imagine that it is sad to think his time of living independently is being cut short. I'm sure his children are concerned and wanting to do what they think is best. However your partner will need to act to defend his right to make his own decisions. Perhaps you two should visit an attorney to see what legal steps he can take to protect himself. If he needs assistance from the children he will need to take that into consideration. If you need help at home, get it and perhaps that will make the children more comfortable with the situation. Be glad they take an interest in their father. Having the dr on his side is helpful. Perhaps he can negotiate a span of time or a stage of the disease as a more appropriate time for him to consider AL. The dr might be willing to give him guidance on what he should expect and when alternative housing and additional care would be appropriate. Hopefully your partner can make a good decision that will work for all of you. Best of luck.
Assisted living is not jail. Would he have a private suite? Wouldn't it just be another olace to live, hang out, with more hands to help?
Dear 97yroldmom, Thank you for your kind remarks. Yes, it is quite sad to imagine that his time of living independently is being cut short when it needn't be. Yes, his children are concerned and wanting to do what they think is best. Yes, my partner will have to need to act to defend his right to make his own decisions. But why should he have to? Why should he have to hire an attorney to take legal steps to stay in his own home? This is, to me, just a lot of added stress on him and almost bullying. You say I should be glad his children are "interested" in their father. Please excuse my reaction but am I to be be glad that his children are bullying him? This guy is going through skin cancer right now and the added stress of their constant demands are not helping him. They are just making things worse. His children's interest is, imo, just adding to his stress. As I mentioned, his doctor doesn't believe he needs this just yet. I appreciate your taking the time to answer, though. Thank you.
Dear Babalou, You said, "Assisted living is not jail. Would he have a private suite? Wouldn't it just be another olace to live, hang out, with more hands to help?" Wouldn't it be better living in his own home and hiring some added help, as needed? I thought the intent was to keep the person in their home for as long as wanted and needed. How would you feel to be suddenly displaced by your children when you, your doctor and your caregiver [as well as neighbors, other doctors, friends who live near him] don't believe it is warranted yet? Why should he have to leave his home if he doesn't want to? I have visited several of these facilities and I listened to the sales pitch [and it "is" a sales pitch] and I've seen the tiny living arrangements and I've spoken to several residents. Why should he have to do this? I think that sometimes children think they are doing the best thing for their parent and the parent eventually acquiesces because they are so bullied into submission by children that they see a few days out of the year. But, the people that care for them and their neighbors who see them every day and know the person's limitations and abilities and don't agree. But because the children want to be "worry free", the parent ends up disrupting their lives and losing their precious last years of independence and dignity just for the sake of the wants of their children. I'm sorry and I don't mean to be rude but I've been on these "Help for Mother" type websites and although they have their place, imo, they are not always the answer. Their slick marketing is geared for one thing and one thing only - to make money for corporations and easing adult children's guilt. With all due respect, can't anyone see that? This is the meaning of my question. I thought this was a caregivers support forum. Not another "How can I talk my parent into moving out of his house?" forum. I've been with him for almost 15 years and I am not complaining about taking care of him. I should think I would have a voice in this but because I am not "a cheerleader for AL", I am being cast aside and his life is being uprooted. Why? So the children don't have to worry? I am the one doing all the work, not them. I appreciate your taking the time to answer, though.
Just, this is a real conundrum for all of us. I'm 62 and my mom is 92. My kids are in their 30s.

Read Atul Gawande On Being Mortal. Yes, adult children want to know dad is safe. It bevomes an even bigger issue when they live far away.

Here's the thing;he had an episode of paranoia brought on by meds. Were you able to handle that? Are they confident in your caregiving ability ? Are they not seeing that you are providing good care?
Is your friend competent to decide and willing to have you as his POA for financial and health. This could alleviate a potential problem of his living arrangements.
I see this as a battle between the intent of the adult children and you, with your partner in the middle and probably being exhausted by being the proverbial child presented to Solomon.

I think the first thing he needs is peace from being the center of attention, and needs to be allowed to make his own decisions. I do agree that seeing an elder law attorney might help, but I think your partner also needs to have respite from the opposing forces.

I can see that the adult children may feel he needs their assistance and are trying to provide it in a time of needs, but it seems as though they haven't been around for some time and are now suddenly attempting to dictate the course of his life.

It is, however, up to your partner to decide which course of action he wants, without interference from anyone.

If you feel his doctor is right, then do your research, learn what's available for in-home help, and go for it. Create a plan of action and follow it.

Someone battling cancer shouldn't be put in this position, by anyone.
justhecaregivr1, if everyone here thought the same way, there wouldn't be a need for a forum like this. There are many grown children who cannot be hands-on caregivers that are glad Independent/Assisted Living complexes exist. Each case is different.

I tried to get my parents to move to Independent/Assisting living as their home was no longer elder friendly because of all the stairs. They refused, even though I thought it was in their best interest being they were in their mid to late 90's. And they refused any outside help. Mom eventually fell and passed on due to compilations of her injuries.

After a few weeks Dad decided on his own that he want to try out Independent/Assisted Living. Well, he moved in and is happy as a clam there, he's safer, and said he should have listened to me years ago. If feels my Mom would still be around if they had moved. I asked him if he misses his house.... his answer was "no", as now he doesn't need to worry if we get 2 feet of snow, he no longer needs to shovel or worry about driving in the snow. No more worries about repairs, or worrying if this or that needs replacing. He said the Staff is great, he has zero complaints.

I am in agreement with most of the posts here. Since your partner is still able to make his own decisions... he should take full advantage of this, before he may be no longer able to do so.

Having things in writing, and having legal matters also in writing, is also helpful.
A very simple thing would be to have a Power of Attorney in place, designating you as the decision maker, should he be unable to do later on. It can also cover his bases regarding moving.

If you are considering being a paid caregiver to him (which you can be)... sometimes various states will not allow the person who is the POA to get paid. Depends on the individual state.

Furthermore... could someone else you both trust be the POA? Like a trusted attorney, perhaps???
Thank you all and I apologize if I seemed curt. His two children share POA. I believe I handled his paranoia well by calling 911 for EMT's as soon as it became clear. I drove there with his med list and history and stayed with him. His daughter jumped on a plane and came for the weekend but spent two days visiting ALF's, as well as visiting him in the hospital. It soon became clear that they were planning on sending him into an ALF directly from the hospital without him even choosing where to live. He was angry with them about that and when he came home he began proceedings to change his POA to me but I didn't want to cause a rift in the family. I thought they would see that he was fine. He told them he didn't want to move and he told them to discontinue acting on his behalf but that he would look at some and choose one for some time in the future. He is competent and he realizes he will need to move into such a place in the future. We just don't understand their urgency and it is creating more stress. I agree he needs less stress and I am beginning to research stay at home alternatives. I just want him to have as much independence as long as is safely possible and I want him to choose where he wants to live but they keep pushing for ALF by sending us constant links to them and calling and asking if we've gone to this one or that one yet. I think they are being influenced by reading a lot of web sites that cater to that need. And I realize that there is a need for people and that ALF provides for that need. I just don't think it's time yet and I don't think they should suddenly appear in our lives and start making plans that neither he nor I want. It makes me feel as if they don't think I am a good enough caregiver. Ive been with him for 15 years and this decision is affecting my life, too. Now the cancer treatment takes priority and we are trying to deal with everything but I just was asked to make an appointment for dinner at another one and I just don't need the extra intrusion right now. Of course, they think they are doing what is best for him and helping. I just wish that help would be in the form of respite care for me or at the least to respect me enough to include me in their decisions. But since I made my feelings known and am not a cheerleader for ALF, they have cut me off from any further conversations and only deal with him now. And I fear he is going along with them to appease them even though he does not want to do it. Thank you all for the advice and a place to at least write down my feelings.

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