Long Term visits
As a caregiver I moved my Father, who had Cognitive decline/Dementia, into my home. He lived in Colorado & I live in Massachusetts. He has adapted well. I found him neglected and financially abused by family members while he was living in Colorado. So I moved him in with me and received Guardianship. We have a lot of support services in the area for Dementia patients. The issue at hand is the demand from family members to bring him back to his primary home, which is being maintained for him by a family member. I am reluctant to take him back for visits, as his confusion increases with any change in environment or change in schedule. I have tried to keep zoom visits with family members available, but he is hard of hearing and finds them frustrating and then this progresses to sadness and anxiety. I have suggested that these same family members plan a trip out to Massachusetts for a visit, but they feel I should bring him back since I removed him from their area. How do I handle this the best way for my Dad? I truly want him to maintain connection to the family members, (his great grandchildren and persons not involved in the abuse & neglect.) but traveling with him and changing environments I fear with accelerate the confusion and Dementia. I need to do what is best for my Dad but feel I can't protect him from the abusers if I take him back into that environment. I really don't want to isolate him from them, but he has developed so many friends at his day care facility here, and he is flourishing, a side of him I never new existed, i.e., artistic talents due to the activities at the day care facility. I don't feel he is being isolated in his current environment, but the demands and guilt keep popping up. Is this just the fine line a caregiver has to walk? I am new to taking care of a person with Dementia, although not new to caretaking. Any suggestions on how to handle a very difficult situation would be welcomed.
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It’s sounds like you are looking out for the best interest of your dad and he is doing well in his new environment. The family should appreciate the care you are providing, realize your dad is thriving in his new home, and if they are really wanting to see him they should be more than willing to travel to do so.
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9 ReactionsHello @nana59 welcome to connect. It sounds like you are walking that fine line we all feel when caring for someone we love.
My own belief is that you should not feel guilt about the choices others make for themselves. If they don’t want to visit him, then that is a choice they make. His condition makes it unreasonable for him to travel half way across the country, and can you imagine the fiasco of an airport?
I can however make one suggestion regarding the zoom visits. We fit my aunt with a pair of blue tooth aftershokz, that is a bone conduction head set that also allows natural sound. I use them when I do meetings on my computer and they are amazing for the hard of hearing in many cases.
Kudos to you for taking care of him, and putting his need ahead of the wants of others, I know how difficult this is and how much guilt you can feel. Remember, you are one person doing the very best you can for another person and remembering how he was when you first decided to bring him home with you can sometimes help you get through when you have to make the hard choices for him.
How long has your father lived with you? Have the other family members made a visit or looked for ways to help with caring for your dad from a distance?
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8 ReactionsThat does sound tough. I do not like being the one to make all the decisions regarding my husband with dementia. So, you've taken on this role and I feel it's a tough one as you've stated due to family requests.
Perhaps build your case Re: why Dad should not travel. Line up the positives and negatives, share your findings with family and logically explain that Dad comes first, his needs take precedence over their desires, etc.
Good luck! 🫂
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6 Reactions@auntieoakley My Father has lived with me for 2 years now. No other members of the family have visited, nor have they volunteered to help with the caregiving, either financially or physically. I really do not begrudge them as I do know how hard it is. My disappointment lies is the fact that we have a large family in Colorado, and no one stepped up when he was being abused and exploited.
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5 Reactions@judimahoney Thanks.
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2 Reactions@nana59 sadly in the really crazy world we all must live in today. I hate to admit that I have been guilty of not seeing it when others were in distress.
I also have been the one who stepped up when I did notice and move aging family members in with me several states away when it was finally clear they were not managing on their own. That is the point when I had to do as @labrown and @judimahoney have suggested and consider the family members well being first, second and third.
I of course, am not suggesting that you be unkind, just to do exactly what you are doing. Then don’t feel guilty about it, you are doing the best for your dad.
Have you talked to the other family members about the neglect and financial abuse? How about how well your dad is managing in his new home?
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5 Reactions@auntieoakley Thank you for your comment. I hope your caretaking is easier than mine. I keep all family members informed of Dad's health status. The other family members are also well aware of the neglect and financial abuse but made a choice to not get involved, as so many people do. Life is hard enough without getting involved in some one else's drama. Unfortunately, the vulnerability of the aging population is not talked about enough, until it hits home. It's a mess, but we are working through it one day at a time. I have a good legal support system in place and hopefully we can undo some of the damage, although we may never recapture the what was spent.
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5 ReactionsYou are wise to keep your legal support system apprised of any previous emotional/verbal, physical, and financial abuse/neglect that took place while your father lived near a large family cohort in Colorado. Your obligation as a caregiver is to assure that does not occur again. You have also demonstrated that your father is content based on your efforts to arrange activities that are safe and enjoyable for him and minimize his lapsing into anxiety or fear in his environment. Perhaps you could provide those in your family who wish to have him back in their midst with a detailed summary of the daily/weekly scheduling that keeps your father reasonably content as he walks this journey of a disease that progresses daily. Of course, a family member in Colorado would need to take on the role of primary caregiver and demonstrate that similar quality activities would be in place prior to your father's return to his home including who will live full time with him. Do you think your commitment to your father's wellbeing can or will be willingly duplicated? Changing locations is traumatic for those with dementia. Your father is not "portable" at the whim of family members who are likely not well informed about his disease. If they were, they would be grateful for what you are doing to provide for comfort and joy for whatever remaining time your father has on this planet. You will likely remain your father's best advocate. Are you able to do so remotely?
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5 Reactions@dillknox I have thought of that, but there are no relatives that are willing to step up. The home, primary residence is also located in a remote, very small town with little to no nursing care for alzheimer/dementia patients. I really would not even consider taking him back to live permanently unless we could find a top rate nursing facility and be able to afford it. You are so correct....My Father is not "portable" to be available when they feel the need to engage. Thanks for the perspective.
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6 Reactions@auntieoakley My father has a cochlear implant in one ear and wears a hearing aid on the other ear. Do you know if the aftershokz device would work for him and where would I find out about it. What company sells it so I could possibly research what it accommodates regarding the extra hearing devices presently used. Could you possibly send me a link to the website so I can investigate it. Thanks.
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