I started section one below on February 9, the first day of the 2018 Olympics. Danged if Life didn’t cause an interrupt. I no longer remember where I was going with a soccer reference, but I do know where I’ve been. It’s nowhere I’d recommend.
2/9/18 – The nicest thing I do for my husband is circle the soccer matches on the sports page. I jot the channel numbers next to the listings, too. Peter loves his “football.” I did not do it yesterday when the Olympic events began. The winter games only come along every four years and soccer took a back seat.
People say I’m such a good caregiver, so patient with my ever more confused husband, always able to laugh at our plight. But really, except for reminding him about football matches, No. I’m. Not.
As his condition worsens my stress heightens. No surprise there. Exhaustion envelopes me like shrink wrap on a carton of mushrooms. While Peter sleeps easily and long — 10-12 hours a night, plus mid-day naps — my sleep is a power nap now and then and seven or eight interrupted, restless hours at night.
As Peter becomes more oblivious to things, I become more aware of every thing that could go wrong with our lives, our health, our house, our country, our world. While he sinks into what could be likened to torpor, I become more frantic about what needs doing, fixing, cooking, washing, repairing, mending, replacing.
Any caregiver who is on duty 24/7 will understand. I’m lucky in comparison to some because I do have help with Peter several times a week, two daughters to advise me, cleaning help, and friends to console me. But still I fret.
4/14/18 – Where I’ve been is in the throes of indecision and upset unlike any I’ve experienced on this caregiving journey. In my most recent posts I’ve written a lot about the problems, the angst. Yet, as I write, I cringe. Whining doesn’t help.
Since February 11 and all the chaos that followed that event, our lives have changed. For one thing, my formerly cussedly independent husband is now very needy. He can no longer do even the simplest things — make his own tea or a sandwich, walk the dog, or even walk by himself without stumbling or falling. All these are markers for the escalating effects of Alzheimer’s.
He can no longer visit nursing homes with Nobby. Even eating out is problematic because he can’t make up his mind what he wants, yet doesn’t want anyone to choose for him. He’s satisfied watching Netflix at home these days rather than going out to a movie.
I’ve had to take further steps to ensure his safety inside the house — locks on the basement door, for instance, and no locks on bathroom doors. I took rugs up lest he trip, put covers over the stove’s gas burners, and I never leave the house without him, even for a quick dash to pharmacy. “I am OK on my own,” he yells when I insist he come with me.
These days we play endless games of dominoes, occasionally go for coffee or a drive. He even refuses to walk Nobby because he doesn’t want me to go along. “I can walk by myself,” he insists. But he can’t, not any more.
The one thing my husband still can do is pick up sticks in our yard and little patch of woods. He was thrilled two weeks ago when he could clean up a big branch that broke off our maple in heavy snow. He spent the weekend snipping, breaking, and sawing branches into precise lengths for the town’s after-storm pick-up. Son-in-law Martin arrived with his chain saw to take care of the biggest section.
Other caregivers would understand why such a silly thing as watching my husband’s obsessive twig collecting nearly drove me ’round the bend. When I complained to Martin he said, “He’s having fun, he’s out of your hair, he’s happy.” I laughed. He was absolutely right.
4/15/18 – Where we’re going is a post yet to be written, a post I don’t want to write. In the meantime, on this stormy Sunday afternoon, Peter is in the woods picking up sticks.
2016 National Society of Newspaper Columnists’ contest finalist.
It’s been said the hardest decisions are made with the greatest love…💕
Judith, I get it, I do. You’re not whining, your fatigue is talking. Being in charge of self and husband day and night and the accompanying worries is huge. I am not quite as far along the journey but I’m in your path. My best to you.
Thanks, Mary Ann. It is not a pleasant journey, is it?
No easy answers. The sticks made me think of a pt yrs ago at this same stage. In the hospital the Meds were written on various color tickets. Bedtime, Orange, four times a day yellow etc etc . I mixed up a pile, brought them on a tray and asked pt if she could help us sort the tickets. She loved it! Took her couple hours to sort. I then took tray out, mixed them all up n did it again. We do what we have to do…your doing better then so many, never doubt it. Amy
Thanks, Amy. Love your solution to your problem, There’s always a way, isn’t there?
Maybe there’s some sticks down tonight for tomorrow’s chore.
I’m sure there will be!
Your words leave me with feelings of sadness, loneliness and exhaustion. Such a terrifying journey you are on. Sending strength. 💙
Thank you, Sue. I need all the strength I can get.
Thank you Judith for your posts. I am way behind you on this journey but I can even now totally relate to your posts. God Bless, you are an amazing talented woman. So glad I met Carolyn on our N Italy trip. Have shared your blog with my support group.
Thank you, Prudy. I appreciate your comments.
I feel for you and just know that your frustration is normal and nothing to be ashamed of. You are only human after all! I know you will make the correct decision for you both. Not easy but necessary. I wish I had more than words for you, but unfortunately that is all anyone can offer at this difficult time. You are stronger than you think you are, remember that. Love to you both, Sharen
As we say in our family – Well, hell, Nell!
There is not one thing I can say to help except I know and understand.
Sending you a hug today.
I like that — well hell Nell! Thanks, Kathleen