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My elderly (85) father, whom my sisters and I believe has early-to-mid dementia, doesn't want us to visit him or call him at the hospital. He had a minor stroke 3 years ago, and lives at home with a caregiver of his own choosing. He has grown increasingly distrustful of my sisters and me over the years, for no good/rational reason. Now he is in the hospital with pain that might be due to a pinched nerve and/or muscle spasm. He didn't want his caregiver to let us know, but she did because she felt we should know. I am the only daughter who is local, I live 15 minutes away from the hospital, but he does not want me to visit. I feel helpless. I think he wants to maintain his independence, but I also think he does not trust us & fears that we want to force him into assisted living. We have told him over and over, truthfully, that we support him living at home with his caregiver, with whatever adjustments need to be made at the house for his safety. It is heartbreaking to me that he doesn't trust me. I don't know how to handle the situation. He doesn't want me or my sisters involved in his medical care, at all.

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I agree that some of this may be a probably irrational, but still real, fear of aging and being dismissed and/or "put away." I believe that you are doing all that you can. You could try writing him a letter that, hopefully, the caregiver will read to him, reminding him that you fully support his choice of living the way that he has chosen as long as he has a caregiver. This caregiver showed good faith by contacting you so that relieves my feelings that the caregiver could have been feeding his fear. It sounds as if ego and fear a behind a lot of this. I understand why many elders fear that their children will take over their lives. There's a fine line between helping and taking over and that line is not always clear, especially to worried adult children. Then the parent may go overboard. I'm not saying that your dad is doing this because any of you went overboard. It's just that many older people will assume that this may happen. You sound wonderful and understanding, but concerned (as you should be). Work with the caregiver. Ask her (or him) to explain that none of you want to change his living situation. It's just that you love him and want to see him.
We're thinking of you - this is a tough one.
Carol
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If he has dementia, as you state, then he may be suffering from delusions about you and your siblings. No matter what you say, he may remain under the belief that you have some hidden agenda. I don't know of any way to change that. Sometimes, the delusions will fade on their own. So, as long as he is still competent, I don't know of any way around this. I know it must be very frustrating. I might send a nice card with a loving message or perhaps a plant of flowers. Or even a photo of you all together wishing him well.

Hopefully, the hospital staff will pick up on how capable he is to live at home and if concerned, they will discuss with his doctor and social services.
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Make occasional visits and only talk about things others than his illness, house, situation. Talk about the grandchildren, the weather, sports, anything, so he sees that you crave his company and are not trying to control his life. Tell him how great a dad he has always been, that you love him, etc. Make sure you hug him, hold his hand. Elderly people get so little physical connection anymore, so a hug means so much, even if taken begrudgingly.
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Putting myself in the situation, I personally would just honor his wishes and not push the issue if he doesn't want hospital visitors, that's how I would handle it, just stay away from him if he doesn't want you there, that's his right as a patient
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My father (83) had been spiraling into anxiety, having delusions and being distrustful of me, my mom, nurses at his dialysis treatment center which worsened over time. Finally we decided to take him to a psychiatrist who put him on meds that I believe have helped tremendously. He is more balanced all the way around.
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Bluegirl9, I often heard My Mother say WHEN YOUR SICK OR SORE NO ONE WILL WANT YOU, AND ITS YOUR OWN FAMILY YOU WILL HAVE TO TURN TO. Do not feel bad because Your Dad is pushing You away as it's the illness, plus there's a stubborn streak in Us Men, and We make dreadful Patients. Your Dad has always been the Provider, the strong One and now He's weakened by old age and I'll Health, thus His Ego is in bits and He probably does not want You to witness this.
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Blue - I'm gong to approach all this from another viewpoint...... You may have an opportunity to get long needed changes done. It sounds like the caregiver knows what dad is like as she called you. She reached out to you. I'd bet that the caregiver has her own concerns in working for dad & if so this is good for you. When dad gets discharged there will need to be a care plan in place. Social services unit at the hospital usually coordinates this. You ahead of time contact them to clearly discuss your valid concerns & that of his caregiver. If caregiver can accompany you so you two are a united front that dad needs a higher level of care that would be ideal. I'd bet that dad will be discharged for "rehab" to a SNF. The rehab period gives you time (3 weeks or so is the initial rehab period paid by Medicare) to determine whats best for dad and figure out how to make this hapen. You & caregiver Be very positive about rehab. if you have to pay caregiver to go with you on the socal services meeting, do it.

.? For you? Is the current caregiver ok with caregiving of dad IF dad ends up coming back home and needs lots LOTS more care. Strokes, dementia & nerve issues probably with pain(?) plus post hospitalization, well he could be quite the handful to deal with. What happens if current caregiver stops? Dad being in rehab gives everbody time to see if it at all makes sense to return home. Dads in safe environment with 24/7 and getting PT /OT rehab, totally a good thing.

Social services can nudge dad to do DPOA, MPOA and HIPPA as part of the discharge. If he balks at it being you, let it be a sibling. Whatever. Just so somebody has it. Having to go guardianship is nothing but time & $ which you want to avoid if you can. Try to learn to pick you battles, he's likely to fear you the most as your nearby and know his reality. Good luck!
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Bluegirl9 - you are "thinking" way too much? Has your father been diagnosed by a doctor to state that in fact he has dementia? There are other medical, physical reasons that mimic dementia (when Vit. B-12 is deficient, Vit. D is deficient) and need to be ruled out first because an MRI is done to prove he has in fact dementia. At 85 yrs. with strokes, he probably has some dementia, but unless he has been certified incompetent, then he can dictate whom he sees in the hospital. He obviously trusts this caregiver with whom he lives, and I suspect he might even think of her as his "wife" (in his mind). Back off for now and while he is in the hospital make his home safer for him to live there. If he has dementia and he lives long enough, he will forget who you are and will be unable to speak. Prepare yourself for these conditions and continue to love him regardless of his health issues. Keep in touch with the caregiver. She sounds like a gem.
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Or maybe it is an ego thing, he doesn't want you to see him sick. Being in the hospital just send a message to everyone that he is now getting older, and he may not like that. Assisted Living, never.

Now I wonder if your Dad has someone as his Medical and Financial Power of Attorney. If not, there is still time for him to do that before his dementia progresses to a point where an Elder Law Attorney won't allow him to sign any legal documents.

One has to remember at your Dad's age, the sound of assisted living or a skilled nursing home brings up a mental picture of an asylum, which is how it was a half century ago. Parents don't realize today's assisted living are more like hotels.

My Dad's Assisted Living/Memory Care had quite a few fellows on his floor, so Dad made a lot of new friends. Before Memory Care, my Dad was in Independent Living, in the same complex, in a really nice large apartment, plus he was able to bring along his caregiver. He really loved living there :)
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Autonomy is something I personally value. Maybe too much, myself. I hate other people trying to help me when I do not need it, and I am well aware of that.

I know elders can be so scared of being "put away" and I have heard them speak among themselves of this fear, and state how scared they are of their own families. I have seen them take great efforts to cover up tiny mistakes that *may* appear as dementia, or take offense if anyone says *you are getting old." I have decided not to say that to a person since even joking around like that is probably a form of ageism, micro-ageism or whatever.

If you think of the fear of being put away, or exaggerated fear of it as like the media hype of many things (such as certain cancers that are actually rare), such fears can become exaggerated, especially when an elder is isolated, or anyone is isolated. Isolation causes any fear we have to loom larger than it did previously. it takes up too much space in our lives, becoming central when our other lives which used to occupy our minds aren't there anymore. One's home and what is left of one's possessions is all one has left. That little world shrinks and shrinks.
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