After receiving the the news of the rapid advancement of my Lewy Body Disease I’ve been doing some serious thinking and have had some difficult discussions with my wife. She has always said she intends to keep me at home until the end, doing as much of the care giving herself as possible. While I dearly love and respect her for this, experience and the stark reality of our recent news bring home the fact that this is not feasible as a long term goal. Eventually I will require not only memory care but more and more physical care that often requires brute force, and I’m not a small man by any means. She suffers from advancing rheumatoid arthritis and can not afford the physical stress such activity would place on her body, not to mention the mental stress.
She counters that our sons will help her and she will be able to hire home health aides to give her relief. My problem with that is I know my wife. She has good intentions. She would go into it with all Intents of accepting that help but would in actuality be involved in every aspect of every detail of anything done to and for me. I’m not saying she’s controlling. I’m saying she loves me and thinks she can best care for me therefore she needs to be involved in every aspect of that care. In theory that’s not a bad thing but in reality it would wind up killing her.
With this in mind I’ve started the discussion concerning senior living in a memory care unit when I’m more mentally and physically incapacitated. It is not an easy discussion to have but one that must be be had. She is very resistant, feeling that our life together would effectively be over at that point. But I feel we might have more quality time if she is visiting me as a wife whenever she wants/can rather than tending to me 24/7 as a caregiver, possibly coming to resent the imposition on her life and health. I know she wouldn’t do this consciously but the subconscious is a powerful beast.
With these things in mind, and with some trepidation, we have started exploring some local senior living communities featuring memory care units in our area. We have an appointment to tour one tomorrow. Although I don’t expect to be in need of their services for sometime, I would like to have some input in the decision while I still have enough mental clarity to make an informed decision. We have informed the personnel at the center of the fact finding nature of our tour, that we are not in immediate need, and they are fully supportive, encouraging as a matter of fact.
So that’s our latest step in life. Although it could be considered a dark step I tend to look at it in a positive light in that at least we still have the opportunity to plan for what lies ahead rather than simply react and take whatever comes our way. It’s our chance to continue to have some modicum of control and dignity over our lives.
Hope you have a great day a and the sun shines brightly upon your back.
Randy
