Lolly and I are well into the ninth year of her illness, a rare form of Parkinsonism, which is debilitating, progressive, and — so they claim, and I do not believe — fatal. Once in a while someone will say that I must be a special person to have been a 24/7 caregiver all these years. I don’t really think that’s true.
It doesn’t take someone special; it just takes someone who cares.
So please, if anything like this ever happens in your family, have confidence. If you care, you’ll be able to handle it. To begin with, this kind of thing doesn’t usually happen overnight. There are forewarnings, tests, a diagnosis, talks with your doctor — time to learn, to adjust, to grow. You’ll have at least months to prepare, and probably years.
At this point in time Lolly can no longer do a thing for herself. She can’t walk, or talk, or do anything much at all. Most of the time her eyes are closed. She has to be fed and cleaned and taken care of in every way. But that didn’t happen overnight; it took nine years.
Someone who didn’t know Lolly’s disease might think she is asleep or unaware of what is going on around her, but that’s not true. She’s still in there, still the same person, still aware, still my beloved wife, and still as much in need of love and attention as ever.
Sometimes she will say a word or two as clear as a bell. Not often, but sometimes. Quite often she will say something that she understands, but I have to guess at. It’s not all that hard, though.
Suppose, for example, I ask, “Are you thirsty?” and the answer is not very clear. No problem. Aren’t you able to tell what someone is saying as much by the tone of his voice as by his words? Yes? Well so am I — now.
And so will you be if the need ever arises. We are trainable, you and I. And never fear. You’ll have the best teacher there is — time.
I don’t know all there is to know about Lolly’s disease, and to be honest I suspect the “experts” are often just guessing. The signs that her mind is still as clear as ever are unmistakable. She responds to questions, she makes “comments” at times when you or I would, and she is the past master at non-verbal communication. Also, she laughs at things that are funny, which to me is proof positive!
Want more proof? Try feeding her something she doesn’t like. And healthy? Whenever the doctor runs the same routine tests on Lolly that he runs on me she comes out better! And I am not the most unhealthy 82-year-old on the planet.
Nor will you be alone in your battle to provide the very best for your beloved. Arizona will help you, so will Medicare, your doctor, and several programs. They can’t provide the one thing that you alone can give — unlimited love — but they can help in many other ways: by slowing the progress of the disease with physical therapy; by providing expert knowledge and sound advice; by taking a portion of the burden off you. And more. Here in Gila County, we are especially lucky — Gila Aging is the absolute best of the best.
I have to be careful what I say next lest you think I am criticizing nursing homes, or those who have no choice but to put a loved one in one. I am not. It’s just that you need an important piece of advice.
When is a nursing home “best”? Only when it is impossible for you to keep your loved one at home. I have clear-cut proof of that, but prefer not to go into it. Just think about it, Johnny. How you would feel if you found yourself permanently trapped in a hospital environment and surrounded by strangers?
Got that feeling down pat?
If you ever have to make that decision for someone else, remember it!
There is no substitute for home, for being surrounded by familiar sights, sounds, faces and voices. And there is no substitute for being told — and believing it because you can see it — that you are loved.
Why do you suppose Lolly is still with us? Still doing so well? Still not unhappy after nine long years? It is not an accident.
Every night when I come to bed I kiss Lolly and tell her how happy I am to be there with her. I talk to her about the day we had, or about the coming day, or about some happy moment in the past. She hears me and she responds, and what’s more, it’s easy to see that she cares that I care!
I wish I could pass on nine years of experience, but it would take many columns to do it, so I’ll close with the most important thing you need to know.
Not only can you do it, it will be the most rewarding experience of your life.