Catching Up Is Bringing Me Down
It has been so long since I have written — here, anyway. More on that in a minute.
This is a quickie, to just touch base and let you know I’m not gone. But 2021 was kind of a shitshow for me, and my new normal is kind of stinky as well.
In June, my dad died. He had suffered from Alzheimer’s for more than a decade, so it was time. The end wasn’t pretty (I’ll never forget the sound of the “death rattle” as the hospice nurse called it). But it’s over. He is no longer disintegrating piece by piece, so we no longer have the internal war of wishing him peace, but not wanting him gone. I have a tribute post in the works, and will hopefully get to that next month.
Last spring, HWSNBN (my husband who abhors social media) finally decided to see someone about some hip pain he was experiencing. The chiropractor helped for awhile. Then he saw an orthopedist, who suspected an arthritic hip from all his years of long distance running. PT was prescribed, but it got worse. During the Boston trip (read that post here), he calmly shared with me that he couldn’t feel his right leg. It “woke up”, but we were shaken.’
He tried a steroidal injection, and that helped for a bit. We managed a Vegas trip in July, and had a ball. But shortly after we returned, the pain was back, and worse. He continued to be unable to run, which was just killing him. The orthopedist was alarmed, and decided it was tie to see a neurologist.
What followed were rounds of tests — blood work, MRIs, EMGs, manual assessments and more. And then they were repeated. On October 1st, we learned that after excluding everything else, they determined he has ALS.
So yeah. Shit.
Since then we have been busy coming to terms with what that means, now and in the future. What future? Who knows. Could be years. Could be, well, not. So far his breathing, speech nd swallowing remain unaffected, an for that we are grateful. But in the just over 3 months since he was diagnosed he has gone from walking painfully to using a walker and now starting to rely on a wheelchair. His right leg is almost useless, and his left isn’t very cooperative either. His hands and arms are weaker, but we don’t know if that’s the disease or the result of overuse from gripping the walker.
Date nights are gone, replaced by home stretching sessions and the never-ending struggle to keep him comfortable. To that end, a lift-assist recliner, swivel tv tray with handle and sleep number adjustable bed are all entering the home in the next week.
Friends, family and coworkers have been phenomenally supportive. “How can I help?” is the phrase I hear mot these days (well, maybe “Donni can I get some help?” is uttered more frequently). From putting air in my tires to bringing meals, to moving things into the attic and running errands, people are amazing. Truly.
I mentioned earlier that I have been writing, just not here. We have a Caring Bridge site that we sue t keep folks updated (check it out here). It’s cathartic for me as well — although, as Singer Girl reminded me, it’s not a therapy session. So I tend to hold back on the feelings there. I will likely be less inhibited here.
But not every future blog post will be about being a CALS to my PALS (caretaker of one with ALS, and person with ALS. All the cool, exhausted people use acronyms). I hope to post tomorrow about our fabulous trip to Sicily to spend Christmas with Sailor Boy. Lots of photos, as usual, so I’ll get at least 3 blog posts about that.
Thanks for listening. I know it’s a downer, but life isn’t all vacations and fashion. Nowadays, I’m thrilled with any me time and clean sweats (is it wrong that I found my filling at the dentist this week a relaxing respite of me time?).
Posted on January 7, 2022, in Uncategorized and tagged ALS, Alzheimer's, CALS, Caring Bridge, HWSNBN, PALS, Sailor Boy, shitshow, Singer Girl. Bookmark the permalink. 3 Comments.
Donni- I have not been on FB for about 1 1/2 years and Rob told me about Rich. I’ll reach out note this weekend. So many thoughts and emotions-mainly, love, fear, sadness, and an abundance of I’m sorrys…I’ll reach out this weekend.
Donni: so sorry to hear your husband has ALS. I assume that he had to retire because of it? Are you going to move back to CA? Let us know when you visit… Saying prayers for you. Say hello to Sharon for me . Love, the Santos’
No, he is still working remotely. His body may be letting him down, but his brain is still as brilliant as ever. We have zero desire to move back to California, lol. We love Minnesota!