This spring and summer has been a time for on-the-job-training for me as I have become the care giver for my older sister who has vascular dementia and aphasia.
As I moved into my 60’s and realized my own short-term memory wasn’t as reliable as it used to be, I depended more and more on the adage “ a place for everything and everything in its place” just as a tactic for keeping track of things. I trained myself to always put the TV remote back in the same place, keys had only one place where they could be placed and found again, and there were many other conventions for letting my husband and me locate trivial but important items. That doesn’t always work anymore.
Now that I have my sister living with me I have had to set up systems for keeping track of her needs and the information systems for attending to her care. Many years ago, before she retired, she made provision for this time in her life. She made out a will and an Advanced Care Directive. She took out burial insurance and a Long Term Care policy. However, with the dementia, she had lost, hidden, or scattered these documents. When I brought her to live with me it was because we learned that the daughter she was living with was an alcoholic and had embezzled all her mother’s money from her checking account by using her debit card and her ATM card. A lot of the paperwork was missing because the daughter had been destroying it. I have been able to slowly regain the missing documents through having Durable Power of Attorney, but it is a hassle of playing telephone-tag with agencies and mailing the copy of the power of attorney each time before I can get anyone to communicate with me.
- Here are some things I now do:
- Make a copy of all identity cards such as Medicare, supplemental health insurance card, State ID or driver’s license because these items can and will disappear. My sister has lost or hidden (most likely) her wallet with these items in it. She tends to churn through her belongings. Fortunately, one of her churnings turned up her will and other vital documents that we thought were destroyed.
- Set up a filing system with a folder for every type of official mail or bills that come in. After I had her address changed to where I live I began getting mail from collection agencies for medical bills that had gone unpaid for years. I had to learn what she has for insurance coverage and pension income. I keep track of what comes in and goes out of her checking account very carefully. I also keep track of her medical reports and her prescriptions. The thing I was most nervous about when she moved here was setting up her daily meds in their proper order.
- I’ve learned to loosen my grip. I don’t try to “run a tight ship”. If she puts the plates and flatware in a different order than I used to, then I can live with that. I often re-wash dishes that weren’t cleaned enough, but I do it quietly, never chiding her for poor performance. The neural pathways for being a homemaker are still alive and well so she very much wants to make a contribution in whatever way she can such as folding the laundry and drying the dishes with me. This is a big change for me because I am a fast-paced, task-oriented person.
A quote I found: “ One of the advantages of being disorderly is that one is constantly making exciting discoveries.” by A.A. Milne. How true, especially when living with a person who has dementia!