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I work for an agency in South Dakota that keeps talking about moving an individual to a different group home. This individual has dementia, she can't walk but is in a wheelchair, she is changed from her brief every two hours, and gets sponge baths. She is close to the last stages of her dementia. I want to do what is best for her, I would like advice to share with those who feel she should move.

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A difficult one. My dad was in his last stage too with dementia, after a severe stroke and he was moved from a large hospital to a more specialised one 10 days before he passed. I was not happy about him moving and they didn't notify us beforehand, but he benefitted in the last few days from the 'better' care. He was calmer and better looked after in the last few days. We can just wish for them to be more comfortable and I felt we had done the right thing.
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As a mother of a special needs child, now an adult - I think I can accurately say that if this individual is receiving good care where she is, she should be left in the setting that she knows. Coupling the challenges of caring for someone with dementia and Down's syndrome, I imagine there are some very specific needs and challenges - starting over in a new setting would most likely be very difficult for everyone involved. This lady should be left to spend whatever time she has left in the environment she knows and with people already familar and experienced in her needs and routines.
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I guess my first question is...Is she aware of her surroundings and who is caring for her?
If she is it might not be a good idea to move her. If she isn't and she will get the same care, or better then it might be alright.
My husband is in the last stages but he is now in bed 20 to 22 hours a day and sleeping most of that time. Would he be aware if his surroundings changed?...probably not. Would he be aware that I was not there caring for him?...probably. If he got the same level of care that I provide would he do just as well?...maybe.
It is very likely that the transition will cause a noticeable decline right away and that decline may not level off as fast as some declines do.

If the transition will provide better care with staff that is more trained to handle the individual situation then the move might be good.
If the move is to a facility where she will not get as much attention then I think that will just hasten her decline and ultimate passing.

Bottom line..no one has a crystal ball. All any of us can do is do the best for the person we are caring for. Ask yourself... if I were this person what would I want someone to do for me.
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Is the reason the agency wants to move her is to put her in a higher level of care? For example moving from a "group" home to an ICF/ID (intermediate care facility for the intellectually disabled) would provide her with more nursing care and probably a higher staff to client ratio. The group home might not be able to provide the level of care she needs.
It would be helpful if you could please tell us why the facility is proposing this move. Also, are you her guardian? If not, who is her guardian? Does she qualify for hospice services?
I have a son with Down Syndrome and I know he is more likely to have dementia at an earlier age. This type of situation is one I dread for him because I likely won't be alive to make decisions. This client is very lucky to have someone like you to look out for her best interests. Thank you for what you are doing!
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It's so obviously a bad idea to move her that it makes me think the agency must have an incredibly good reason for considering it - what is their reasoning?
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I agree with Churchmouse. It's rarely a good idea to move someone in this stage of dementia. It sounds as if good care is already provided. If the agency doesn't have a good reason, I'd rather see the person remain.

It could be that someone needs this space and the move would seem beneficial to everyone, but every aspect has to be considered.

You are kind to be so concerned.
Carol
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What is their reason for moving her? If she is getting good care where she is and is not long for this world i would think a move a bad idea. Bring in hospice to assure she is kept comfortable and allow her to pass in peace.
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No, I would not change this person's "comfort zone" that they've known all along to someplace different. I doubt if they would be able to adapt to such a difficult change.
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Please explore hospice care.
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Moving her is probably going to be done to comply with state laws. My sister moved from an ICF (Intermediate Care Facility) to an IRA (Individual Residential Alternative) when she improved. Now this person in an ICF has to meet the criteria- most require the person able to at least attend a day program. Day programs don't change diapers. So now the person needs SNF (skilled nursing facility) level care. You move them to the level of care that they need.
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I'm sure you're right Pam.

Isn't it a crying shame that the level of care they need isn't moved to them? I know "patient-centred care" isn't meant to be taken literally. I just sometimes wish it was.
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Thanks for all the advice on this topic. I am not the guardian of this individual but have worked for that agency for almost 16 years. I don't believe it is a good idea to move her but I keep getting asked by others in the agency to contact the guardian. I had a meeting planned with her team members in the hopes that the guardian would be on the conference call but didn't answer. It is difficult to advocate for people when you know it's not in the best interest of the individual but others around you just don't listen. I will be planning another meeting as I don't want the guardian to get a call from someone else in the agency pressuring her to move her family member.
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What are the reasons for wanting to move your client?
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This individual is not going to be able to function in entirely different surroundings. The person may be barely hanging on as it is!
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