Re-posted for pedwards

MN Chickadee

A new member named pedwards messaged me this; is having trouble getting it on the general forum and asked me to share it for feedback.

Pedwards: I have been my mom’s primary caregiver for 2 years now because she had a stroke and she couldn’t go back to her assistant living facility. She has dementia and had the stroke at 87 in which she has become total care. I have become exhausted and somewhat angry at many of my siblings for not being concerned at all for our mom. Some don’t come by or even call to ask about her. I am working full time and have a family also. I have 30 approved hours for a cna to care for her while I work. I just need a break and I really don’t want to put her in a nursing home because I know her dementia will become worse because the environment will be so unfamiliar. I have really don’t go to any family functions because I don’t feel as we are a family. I reached out to them several times but they have excuses as why our mom can’t stay a weekend at their house. There is so much selfishness with them. Any suggestions from anyone.

MN Chickadee

Unfortunately many siblings, friends, and family don't behave as they should on this dementia journey. Do you hold POA for your mother so at least you can make all medical and financial decisions? If not I would consult an elder law attorney so you don't hit snags there. You can't force your siblings to step up but do make sure you communicate how difficult and time consuming her care is. How do they feel about her going to a nursing home? Would a discussion of it light a fire under them to pitch in a bit more? I'm sorry your family is not giving you the support you deserve. You are a hero for taking this on. Is your mother on hospice? if not she may qualify as the requirements are a bit different with dementia. That would be an added layer of support.

Some memory care facilities do offer respite care, where the person with dementia (PWD) stays with them for a couple weeks. This may be a good compromise, to get you some time away and see how she does in a facility in case the need to move her permanently comes up. Some PWD do take a long time to settle into a facility but it often is the best choice out of no good choices. A good memory care facility providing structure, routine, and a high level of care can actually be very good for a PWD in the long run. But no matter what happens try to remember you are doing your best for your mom. That's all you can do. If she is total care she is likely end stages. Sad as it is, your days with her a numbered. This grueling schedule won't last forever. I know that comes with a big mix of feelings.