This isn’t all ribbons and bows and beautiful moments. It’s awful, its, hard, and ugly at times. Twenty four hours a day, seven days a week, with no breaks- contributes to physical and emotional exhaustion. And… I am right there. I have not slept in weeks. This tiny frail little momma of mine, is back to incredible restlessness and profound fear. She will not rest- she is afraid. Therefore, I get no rest.
The hospice team asked me today- can you call your family will they come help? My answer- no they won’t. But, why? Well frankly our situation is just too inconvenient and unpleasant for any family member to call regularly, to check in on how we are doing, or to actually come help. No I am not bitter, just pretty damned pissed, but not surprised. So what about friends? Well quite truthfully, they don’t show up to help either. Honestly, I think people just don’t really get how badly help is needed. There comes a point where profound isolation is the norm for families coping with this disease.
Maybe it’s too hard for everyone, or maybe they can’t cope, or maybe they just don’t really care. I have come to understand that the true family I have is the one right here in the midst of this. My true friends- well who knows. The bitter truth – we are wholly alone in this situation and the term community somehow does not apply to families with a loved one with dementia. This is an all too common disaster – the lack of support and help for families caring for a loved one with dementia. Someone in the family steps in and does the work, while everyone else steps away and goes on with their lives. It is a disgrace to the loved one and to the caregiver.
While I am on this rant, the health care system is disgraceful in its inability to meet the real needs of families battling this disease. Sure, we are working on a respite-but because my momma has unmanageable behaviors, we still have to supply 24 hr, 1:1 care attendants to manage the behaviors. So tell me, what is there left to do? The only thing one can do- struggle to find a way to manage; and hope that someone along the way chooses to do the responsible and kind thing by offering to actually help. I will never again sit by and watch a friend go through this alone without support. My heart and soul is with every family member out there struggling to do the best they can for their loved one, every single day and night. May we all have our hearts eased 💜🕉💜
Maya Center 