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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.

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I know how wonderful it is to have this place to vent. Is that all you want or do you want a resolution? Seems to me this stress you speak of is self-perpetuating by both you and your partner. If both of you and his doctor don't feel he needs AL at this point then he just needs to firmly state that. As someone suggested get a time frame from his doctor so that he can say in X number of years I will start looking, but right now I'm focusing on A, B, and C and would like your support with that. Stop running after each suggested place. As for the POA and I would also suggest a separate MPOA, you need to stop being so nice. You see where things will go if he takes a turn for the worst. So either accept that you will be excluded from any decision making and be willing to go along with whatever is decided; or since he is willing, go ahead and have him make the change and appoint you. Either way the two of you need to just make a decision and stick with it.
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This Valentine's Day, let Tammy Wynette's "Stand By Your Man" be your anthem. Ask his kids the denture-dropping question "Is going into ALF the best for him or for you?"
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You didn't want cause a rift in the family, but now his children have driven a wedge between the two of you. Fight for your man and fight for what's yours. Talk to him again about changing that POA over to you. Otherwise he'll spend the rest of his years miserable without you, in a place he's not yet ready for.
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Thank you all very, very much for your suggestions, words, and caring. I appreciate it very much. I am taking a break now and trying to take some time off for a few days so if I do not answer you, please know I am not being rude. I just need to prioritize my time right now. I truly appreciate every single answer. Thank you.
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97yearoldmom, You know, you are right. I think we both tend to be more open about things but if he wants that, then yes. I do not have a POA. Thank you so much for answering.
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diamondsister1, Yes, we should. Thank you for acknowledging that sometimes families do that. And finally, yes, of course, they are thinking they are doing what is best. Thank you for your answer.
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You asked me why should you have to take action to defend your way of life from your partners children. Because it is important to the two of you. Because the children will ultimately have the upper hand if you don't AND maybe will anyway. You don't have to tell the children you and he have taken these steps until it is absolutely necessary. It will give you a level of assurance that your partner is in charge of his life. He can always change his mind. New question. Who is your POA? You were so close to his children. I wondered if one of them was your POA?
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You both need to sit with an elder attorney. His wishes will then be in writing & honored. This relieves everyone of making decisions for him. You will both have peace of mind in doing this. Sometimes family pushes older folks into assisted living sooner than needed to take care of their own worry & not visiting guilts! It makes life easier for them. And it could be they are sincerely thinking they are doing what is best! He needs to sit with attorney and spell out his plan for his own future or deal with pressure from others! Try to stay calm & guide him in the direction that will make him happiest. It may or may not match what you think is best. I am sure you want him to be happy and safe!
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Oh, and Pam, I support him in all decisions! That's why I'm on here!
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Pamstegma, Thank you for your post. He has early-onset Parkinson's that has been well managed by a DBS insert but his doctor put him on a medication that caused the paranoia. He has never shown any paranoia before [in the 15 years since I've known him] other than when he was placed on this particular medication. So, I don't believe it is Parkinson's related although there is such a thing as Parkinson's paranoia. But this recent episode happened within 2 days of taking that medication and completely dissipated once the drug was out of his system so I can only deduce, as does his neurologist, that this was drug-related. I will try to compare notes with Oregongirl. Much obliged.
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Sophe509, I care for my partner deeply. We started out as best friends fifteen years ago. That grew into love and I moved in with him about seven or eight years ago. I lived with him for about 2 years and then moved to a small apartment with the understanding that our relationship would not change and I would still be there for him. His disability was not not that bad then but his awaking through the night affected my ability to sleep. Our agreement was that I would come over and stay for about 4-10 days, twice a month and I would drive him to his one doctor who was an hour away if he felt he couldn't. On the days I was away, we video chatted on Skype every day. We also agreed that I would receive a small stipend that I still receive. It's not very much - just enough to pay my car payment. I don't know. Perhaps his children do see me as a threat but I have no idea why. He is a retired professional but he has no savings and his children are quite comfortable, financially. My relationship with them has always been good. Very good. We talk. We face timed. I've seen their children grow and taken care of buying their Christmas gifts and birthday gifts. We are or always were, anyway, very loving towards each other. They have always accepted me well and thanked me profusely for what I do which I always felt weird about because I do what I do because I love him. But this has seemed to divide us. I will take your advice to try to calm myself down very seriously because I know I need to. I have asked myself if I have had any role in their actions. They have told me that because I am disabled that it would be best for me, as well. I have never complained about taking care of him but perhaps my disability precludes me from giving their father the best care possible. I have Fibromyalgia and I am getting older, myself. I'm 60 and he is 64. But they refuse to even place extra in-home care on the table. This makes me feel as if they think I am not good enough to be his caregiver at all and that my opinion does not matter. I've given him my all and in the last 2 years I have basically been living there. I've been beside him through several cancer surgeries and hospital stays [I would spend the night there in his room] and countless doctors' appointments. I am all he has other than his bi-weekly housekeeper and he is all I have. We love each other. Of course, I'm hurt. As I said and tried to explain to them that I don't want our life to change and I see no need for it to change nor does his physician or his neighbors. Yes, blood is thicker than water. And that is why I gave myself the screen name, "Just the Caregiver". It's as if now I am just "the help" and I am being kicked out and I am heartbroken about it. When we first met he told me that his children wanted to put him in a nursing home and I told him I would do everything in my power to not let that happen. I feel this is happening too fast, too soon, not needed and without his consent nor my opinion of his capacity, validated. I find very little support online for when one is not ready for AL and for in home care but plenty of social support and marketing dollars spent on getting someone IN Assisted Living Facilities. It all seems like such a marketing scheme to me. We've visited four or five and we've talked with the residents there but he doesn't feel he'd be happy in any of them. They all seem so much older than us. He always said that when the time came, he wanted to go into a place that had The Rolling Stones for entertainment; not puzzles, bingo and big band music. I feel that if he should have to live in any of the facilities we have visited [and these are very nice facilities] that he would soon "become" old. Merely via the fact of his environment. I mean no offense to those that live in ALF's, but it would be like living with our parents generation and like him, I just want him to be able to hold on to his independence for as long as possible and to entertain all alternatives before making that huge life change.
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Oh, that would so explain his outburst! Yes, he would need meds for anxiety. His paranoia is not unfounded. If he decides against chemo, please support his decision. Chemo is hell and can induce Parkinsonism. Tough call. You should compare notes with Oregongirl.
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Pamstegma, Thank you, dear. Perhaps I miswrote. It is he who has the cancer.
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Just... you appear to care for your partner. What to you mean to say by using the word 'partner'. Is/was he a business partner of yours? Is he your common-law husband? I didn't see if you said you were his paid care-giver? You mentioned 15 years together. You may have rights depending on the paperwork and formality of the relationship.
The children of this man are not just sitting around plotting how to take him away from you...unless they see you as a threat of some type. For his sake, you need to calm yourself, encourage good will between all parties, try hard to work with the children, obtain some independent third-party medical evaluations, and some legal advice. You have said you don't see the necessity to take these actions as being fair, but there it is anyway. Ask yourself if you have any role at all in his children acting they way they are and do what you can to reassure them. It sounds a lot like what my aged mother used to say: "Blood is thicker than water."
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You must be terribly upset by this. Your cancer treatment would definitely take priority so please let him move to ALF until you finish your treatments. It will take a lot of pressure off of you. You can still have time together.
Chemo saps your energy. With him in AL you can sleep when you need to and sleep well knowing he is well cared for.
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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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Justthecaretivr...

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???
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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.
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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.
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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.
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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?
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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.
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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.
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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?
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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.
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