I asked the care partners in one of the Facebook groups I belong to a simple question:
What would help reduce your stress, improve your ability to provide care to your person living with dementia and make your life and their life easier?
It turns out they don’t need anything extraordinary in the whole scheme of things. Simple stuff is what they need. Most of all, they need help and support. They need friends and family to chip in. They also said they don’t want to be alone, forgotten, isolated or destitute. It’s not complicated.
Here’s a sample from the answers I got:
Someone who is trained AND totally understands dementia to stay with my dad from time to time.
Someone I trust to agree a regular standing arrangement to come over and stay with Mom so my husband and I can get away and have some sort of love life. Even if only for a weekend.
His family and friends to come and see him or at least to call him like they use to.
Some way of reducing the isolation in my life, so that I could spend some time in the real world with real, not invisible, people.
Short list: One person that I could call and say “I need help with mom” and they would come. No explanation needed. Nobody wants to beg for help. Visitors to improve her mood, a much needed break at least once a week.
Affordable care of any kind would help. Friends and family who don’t toss me, the caregiver, by the wayside. Perspectives on communication or how to communicate with a loved one who does not listen, does not pay attention, and does not think about what they are doing. I’ve tried signs, alarms, phone reminders. Someone to talk to that will just let me talk or vent. The isolation is unnerving.
A thank you now and again. From anyone. Anyone at all.
Are you the “someone” a dementia care partner somewhere needs? If you can help, even a little bit, please do.
Thank you.
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My Alzheimer's Story 