My husband has been preparing all my meals and leaving them labeled for me when he goes to work – “breakfast”, “Big lunch”, and “dinner” (usually salad).  While I am so appreciative of his doing this for me, it does not promote any independence. So my dementia mentor urged me to go food shopping and show that I can still do things for myself, like prepare a meal. It was complicated for me to pull it together, but I did it. Finally, I needed  some supervision in the preparation from him while I was making this, after he got home from work. It was intended for the next day, and would be refrigerated and reheated, and the steps in preparing meals are hard for a person with cognitive impairment, but I was the director of the plate. Voila!

Here’s the story behind the photo: I ventured out for a walk and proceeded to get a little disoriented about exactly where I was in relation to the supermarket, because I walked too far, farther uptown in the Western part of town. I couldn’t remember exactly how to find the market from where I was but I did not panic. I kept walking back in the direction of my home, and knew I would find it if I retraced my steps. Whew, I found it! I was there to buy the items for this meal, which I did, and bought some pistachio nuts and cheese. At the checkout, I paid for the items easily with my credit card, and carried the bags home, and put them in the fridge. When my husband got home from work, I set out to prepare all the foods. This required an orchestration of timing. Boiling the water for the string beans, grilling the potato patties, cooking the frozen cauliflower, and baking the flounder in foil pouches. How easy this sort of thing must sound. But for me each step required all of my concentration and coordination. The point is that I did it.

_____________________________________________________________

People with Alzheimer’s are often placed in assisted living and later nursing homes. The reason is obvious, they can’t take care of themselves. As the disease progresses and the spouse who is the caregiver becomes overwhelmed with caring for the spouse with dementia, the PWD gets placed in a home. If the adoring spouse who has become the caregiver predeceases his Alzheimer’s spouse, and the adult children do not want to take care of their mother or father with this disease, and do not want to pay for care of the home that the person lives in, and the cost of a home health aide (which is private pay, Medicare does not pay towards the cost of  home health care for a person with dementia), then being Medicaid eligible means the parent can be placed in a home. My biggest fear is being placed. I do not want to ever be placed in a facility.

I have learned that when a person has been diagnosed with Alzheimer’s, and goes to an elder care attorney with their spouse, everything is set up to take away financial autonomy from the person with the disease, to protect the assets of the community dwelling spouse, and their children. Everything is set up to become Medicaid eligible, so that when the spouse with Alzheimer’s goes into a nursing home, the assets of the spouse do not go for the exorbitant cost of care (at a minimum $7,000 a month and in some $15,000+ per month. The previous arrangement where a home has both names on a deed, must be changed to become Medicaid eligible. The person with dementia can’t have over $2000. in assets. A complete restructuring of finances and legal autonomy for the person with Alzheimer’s takes place, all in preparation for that time when the person is placed in a nursing home. This is how the family keeps their assets, and Medicaid picks up the tab. Sounds like a plan until one looks at what Medicaid really pays for. Medicaid really only pays for state funded nursing homes. These places are awful as you can imagine. Why on earth would I want to be placed in one of these? Elder care law makes it easy for the community dwelling spouse to make that decision when the care of the person becomes overwhelming.

I’m 63 years old and have Alzheimer’s. Some of you reading this know me. Can you picture me in a nursing home setting like the one pictured here?

No thank you.

I do not know if I will be able to keep preparing my own meals. I will try. I will aim towards as much independence as I can muster, for as long as I can. I never want to be placed in a home and if it means I have to push as hard as I can to hold onto my independence even if it is independence with assistance, I aim to. Making my “Big Lunch” was an effort in that direction. I sure hope I do not end up in a home. I do not want to be placed! Ever.