Early in Peter’s the long journey, people warned me, Take care of yourself, take it easy, don’t wear yourself out. They were right, but I didn’t take their advice.
Several months ago, I added more hours to Peter’s two helpers’ schedules to give myself some time off. With those hours I run errands without worrying about getting home to Peter who can’t be on his own for more than a few minutes at a time. Really, he can’t be on his own for any time at all. And I’ve been able to schedule massages every other week, or go to the bookstore and sit with coffee and a new book for a whole hour.
I’ve wondered, how long can I continue doing this 24/7? What would happen to Peter if something catastropic happened to me? He couldn’t live alone and he would make life miserable for himself and a caregiver without me as a buffer. Carolynn and Leslie have always said they’d take turns taking care of one or both of us. I know they mean it, and they would do it too, but at what cost to them? These are the kinds of questions that keep me awake nights.
I’ve known for months what I must do, but I played ostrich. I should have done my research, should have put my husband’s name on lists. The multiple choice answers to my question include Assisted Living? Nursing Home? Memory Care? Private Care Home? Additional Care at Home?
When it comes down to it, assisted living is what Peter has now. I assist. In any case, he would not qualify now — he is cognitively impaired, he wanders, and he’s close to late-stage Alzheimer’s.
Nursing homes conjure thoughts of elderly residents parked at the nurse’s station in wheelchairs. No thank you. He doesn’t need nursing care, he needs loving care.
Additional in-home care would likely expand quickly to ’round-the-clock. It may yet come to that, but that would be the last resort. My husband is uncomfortable, always has been, with too many people around, and I’m a loner too.
What about a “memory care” unit at a nursing home, I wondered? Six weeks ago, when I began to scribble thoughts for this post, I wrote, …no need yet for that level of care.
That was six weeks ago.
Since then, my emotions and any rational ideas I might have had have tossed in my head like wet blankets in a malfunctioning dryer — around and around, flip and flop, toss and turn.
After Peter’s accident four weeks ago (two previous posts) I understood what my friend Lourie meant — she has faced these questions too — when she said, “You’ll just know when it’s the right time…” to put him into care. Or when Karen, owner of a caregiving service, said, “Remember, you ‘have Alzheimer’s’ too. You have to choose what is best for Pete, and for yourself.” And I took comfort from something gerontology professor Dr. Elaine Eshbaugh wrote in a blog, “You are just a person — doing the best you can under circumstances that aren’t great. And you’re not alone.” Others I begged answers from had similar thoughts — don’t feel guilty and don’t let anyone tell you what to do unless they’ve walked in your shoes.
So, after Peter fell on his face, literally, I was smacked in the face figuratively. I had not done my homework and I was not prepared for the awful days that followed. Somehow, in the swirl of emotions, I thought of respite care, something I hadn’t even considered before. Leslie went with me to visit likely facilities. Respite seemed like the right answer for the short term. Rescue for both of us. Peter would get good care in a more pleasant setting than I would have imagined, and I could put my crumbled self back together again.
I started the process, I talked to family and friends and all agreed it was a good idea. They knew Peter’s state was precarious after his accident, and how exhausted I was. Then, then, Peter’s awful journey changed course. He morphed into the person he was several years ago, before his brain was ravaged by rampant plaques and neuro-tangles
Again my own brain tumbled with conflicting thoughts, but after further counsel from friends, I put respite care on hold. Our life is now paused in that blissful place where romance first bloomed.
A delay was the right thing to do.
“A woman is like a tea bag — you can’t tell how strong she is
until you put her in hot water.” Eleanor Roosevelt
2016 National Society of Newspaper Columnists’ contest finalist.
I just wanted to tell you how much I admire you.
Thank you, Judy
Judy, You are amazing. You are working your way through this roller coaster of a journey with such thoughtfulness. You have done your homework now and you are ready to make decisions as life unfolds for you and Peter. It’s both unexpected and lovely that he has landed in this sweet space and you will always treasure this time together. Try not to worry too much and take it as it comes. Easy for me to say, I know. Clarence used to admonish me with, “A coward dies a thousand deaths, a hero dies but once,” because I always did so much anticipatory worrying. I was never very good at hearing that, but now I do and it’s pretty freeing. Hugs to you my friend!
Karolyn, you are a great cheerleader. Thanks for you comment and for your advice.
Well that just made me want to cry for some reason. So glad Peter has made somewhat of an about turn. And now you know what’s available! Funny how it’s all settled down right now. Enjoy every minute of it but also keep up with the massages!!!
Oh, dear, not supposed to be tear-inducing, but since my tear ducts have never worked the way I hear they’re supposed to, I shouldn’t comment. But thanks for your comments, as always.
You will know…and we will be right here for you. 💕😘
Don’t you just love miracles? So happy there is a respite care home for Peter when needed. Keep on doing the amazing job as caregiver including taking care of yourself. Another heartfelt post.
Thanks, Robin. Good advice from a true Care Giver.
one day at a time… one minute at a time.. even with the ‘good’ days ..you will know…..God intervened for me with another situation with one of my kids, since i could not see clearly with Mom. He will help you too….Amy