Sometimes when you are in the daily grind of caregiving, you become numb and forget to think about preparing for the next phase.
When you are dealing with a progressive disease, as my father is, each day you lose a little more of your capabilities. The changes are tiny and only if you are paying attention might you realize what is happening before your very eyes. I notice it only when I stop and reflect back, and then I see that progression. This week, I did a bit of that reflection as I was looking through photos from the last year on my computer. A year ago, my father was still at Sunrise of Paoli. He had just come off of a fall and had completed his rehab for a hip replacement. It was around this time that I realized that I needed to move him; I realized that the place he was living was really not meeting his needs. I also remember that at that time, I was able to communicate with him most of the time. Yes, he had difficulty remembering anything short term, but if I kept my sentences short enough, we could communicate.
A year later, I am seeing fewer and fewer of those meaningful exchanges.
His ability to communicate is almost non-existent, although he doesn’t realize it so he continues to “talk” to me and I continue to do “improv” with him. We “talk” but 95% of the time I have no idea what he is trying to say. I continue to “talk” to him as I want him to always feel he can express himself and I am hoping through my improv skills I make him feel as if he is communicating with me. He is still able to follow simple directions, which is great.
However, I need to start planning for how I am going to handle the next phase of his disease. I predict that at some point he will give up trying to talk either out of frustration or because he no longer has the wind power to push his words out (another side effect of Parkinson’s is that your voice gets very very quiet). I have been testing out strategies for this next phase. And what I have found is that there is a tremendous amount that can be communicated through touch. When words fail, I often just reach out and hold his hand.
It is electric. I instantly feel the love flowing freely in both directions.
Sometimes I just massage his shoulders and I feel him relax and moan in glee. This weekend I bought him a massage. I found a therapist that specializes in prenatal and geriatric massage. He was in heaven. And, I’m told, he was able to verbalize his happiness to the staff all afternoon.
So when the going gets tough….and it will get tougher, it is important to start thinking about that next phase. The next phase may, in fact, be more rewarding than the prior phase.