Incontinence of bowel and bladder is one of the deciding factors for SNF placement. Caregivers being unable to manage the person's ADL's also is a factor. Not having enough help to safely care for her also should be considered.
I would ask at a support group for Huntington's disease and see what the members have to say. Also, I bet there is special Huntington's "class" for HD families to attend and learn how to cope, what the cause of HD is, etc. I attended NAMI (National Alliance on Mental Illness) which covered a variety of diseases of the brain, and learned quite a bit on mental illnesses. It is a 12 week class and is geared for families who deal with brain disorders. Check and see if there is one in your area. The classes were free.
My brother had HD and we started with assisted living while he was still somewhat cognizant but needed help with ADLs. He had been living with me and my family but his care became too much and our house wasn't safe for him. He was in assisted living for about 18 months before he went to skilled care. He was in skilled care for about a year and then in hospice in-patient for four months.
I was my brother's POA and advocate. I found I had to do a lot of education of staff in both facilities since HD is not as common. He was in his 50s and a male, too, so he was an unusual bird in both facilities. Most activities are focused on elderly ladies.
This is an awful disease. Let's pray for a cure soon.
My dad has Huntington's too, and sounds like he is at about the same stage. He's still somewhat mobile, but his brain is starting to have a hard time telling his feet what to do. I feel for you, I struggle with this too.
"it is better for her to walk in to a facility with her personality comparatively intact than to be wheeled in later on, when it will be more difficult for her to form strong working relationships with her care and support team." Countrymouse, that is such a great insight! Thank you!
The association publishes this guide, which I hope will be useful to you anyway but also could help you identify which facilities have the right kind of specialist insight into your mother's needs:
My personal feeling is that when a person will inevitably need residential care at some point, it is better for her to walk in to a facility with her personality comparatively intact than to be wheeled in later on, when it will be more difficult for her to form strong working relationships with her care and support team.
But talk to other families facing similar decisions, don't be alone with this choice.
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I was my brother's POA and advocate. I found I had to do a lot of education of staff in both facilities since HD is not as common. He was in his 50s and a male, too, so he was an unusual bird in both facilities. Most activities are focused on elderly ladies.
This is an awful disease. Let's pray for a cure soon.
http://san-diego.hdsa.org/about/hd-resources-in-san-dieg
The association publishes this guide, which I hope will be useful to you anyway but also could help you identify which facilities have the right kind of specialist insight into your mother's needs:
http://hdsa.org/wp-content/uploads/2015/04/CaregiverGuide_Mid_Late_StageHD.pdf
My personal feeling is that when a person will inevitably need residential care at some point, it is better for her to walk in to a facility with her personality comparatively intact than to be wheeled in later on, when it will be more difficult for her to form strong working relationships with her care and support team.
But talk to other families facing similar decisions, don't be alone with this choice.