What keeps me up at night

My loved one with dementia is my 58 year old sister.She is two years younger than me. She is single, no family other than siblings and a father who is 91 almost 92.

She is disabled. I am her guardian, health care advocate and power of attorney.

Yet I feel powerless.

She needs supervised care. She needs a safe place to call home. Our system of affordable and proper care is not geared to younger early onset dementia clients. Her assets are quickly evaporating with her current housing and care.

To qualify for assistance, one cannot have assets. One can’t apply too soon in the process or you will be denied. I have been told it takes 6 to 8 weeks for a decision. In the meantime services will be sending bills.

I have to make the best possible plans and “bet” they will meet criteria for her to receive help.

I knew this time would arrive and I thought I was prepared. It keeps me up at night!

Early in my caregiving journey I asked how did early onset dementia patients expect to be taken care. I was told that most have families that can support them. They mean a significant other or children maybe a parent will be able to manage the care. My sister has none. She has me and I cannot keep her safe. She needs the proper care. When I inquired about “what if” scenario, I received silence. If she had been 65 resources improve significantly. It is not a coincidence that early onset dementia is when one is diagnosed earlier than 65.

I will see to it she is safe and gets the proper care. Had I not intervened four years ago I imagine she would be on the streets, jail or worse had died from improper care and nutrition.

What happens to those who don’t have an advocate? That also keeps me up at night.

HartFelt wishes that all with early onset dementia find an advocate when there is no family and that the advocate is supported as well.

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