This is last of the scheduled, rerun posts from my caregiver days and if you're reading it you'll know my one-track brain is on another train of thought. I didn't earn the nickname "One Track" for my ability to multi-task. Just sayin' I'm in moving mode big time. By this time next week I'll still be surrounded by moving boxes but those boxes will be sitting in my new place. But Saturday's post is half written, my last one to go out from this house. Blog fodder after that should come easy as I settle into my new life. In the meantime, here's one of my favorite memories from my life living with a husband who for 12 1/2 years could parrot any word anyone said to him but could only initiate a 25 word vocabulary all on his own...
My husband, Don, is an obituary clipper. It’s not a hobby that he picked up since becoming a ‘certain age’ like most people would assume of old people who have a box full of newspaper announcements of this sort. He’s been doing this for at least thirty-five years. Don has a memory like an elephant and he also knew a lot of people, so his collection of clippings was huge at the time of his massive stroke when the collection got thrown out with our move to a wheelchair accessible house. For several years after the stroke he couldn't read but when his reading returned the obituary clipper part of his personality did too.
In Don’s distance past he worked at a funeral home as an after school job while he was in high school. He did various things like take the hearse to the hospital to pick up bodies, put flags on cars on funeral days and wash black vehicles. They liked him so much they wanted to pay his way into undertaking school but he wasn’t buying that as a career choice. The experience did give my husband a special reverence for the importance of funerals and he never looked for excuses not to go to one. In Don’s book, it’s a duty to honor the dead and comfort the living and he’s not about to close that book now that he uses a wheelchair and he can’t talk due to his severe stroke related language disorders, aphasia and apraxia.
In the past, of course, there were many funerals that he went to that I didn’t have to attend because I had no history with the dearly departed. I don’t have that privilege any more and Friday was such an occasion. Don had a clipping and the funeral was to be held at the mortuary where he had once worked. A double header, I presumed on the Planet Aphasia. The name of the dead guy sounded vaguely familiar but no matter how hard I tried, I couldn’t get it out Don how he knew the gentlemen. Oh, but he was animate! This was a funeral where just sending a card would not do. He was going---no ifs, ands or buts about it. Don’s aphasic brain couldn’t say the words: “If you won’t drive me, I’m taking my wheelchair all the way into town” but the determined look on his face sure got that message across. So, off we went in our somber clothing. We’re there doing our funeral thing. Greeting people who spoke to us, signing the guest book and still I couldn’t figure out where this dead guy fit into Don’s life. People would ask us how we knew the guy but, of course, neither Don nor I could tell them. I was doing my standard he-can’t-talk-and-I-don’t-know routine and feeling like I’d like to melt into the floor boards when Don finally got out the word, “Four.” So we started doing the aphasic polka.
“Four that---months, years, days, hours, seconds, people, places, or things?” I asked.
“Years!” Don beamed like that’s going to tell me the entire story. He was so proud of himself for getting out that clue to the mystery. Four years. Okay. We started the aphasic polka all over again.
To make a long story short, just as the grieving family was getting seated so the service could begin my aphasia decoder ring finally broke the code. The only person Don knew in the dead dude's family was only four years old the last time he saw him, and that was way back when Don was in high school, working at that funeral home forty-seven years! Don kept the four year old busy at the funeral home when his parents visited their friend, the undertaker. So I’m sitting there in one of those little wooden chairs that are always too close together for comfort, listening to a bad version of “Precious Memories” and trying my best not to laugh up a cow. It was not easy, let me tell you. Even a few people near-by who had over heard our aphasic polka exchange were cracking up.
After the service, we didn’t stay for cake and coffee although I’m sure Don would have liked to have done so---there are no strangers in his world but I was too embarrassed. And thus ended another wonderful experience on the Planet Aphasia where every day brings something new to laugh about. We have now officially crashed the funeral of an almost total stranger. ©
You and Don really had to work hard in order to communicate! Loved this post--so sweet, yet funny, too. Hope you're hanging in there, with only a few more days to go until the BIG DAY! Today, we're going to start prep for our kitchen remodel in our future home. Part of me wishes I could just wave a magic wand and have it all done. Take care of yourself, Jean!
ReplyDeleteWE really did. Without the opportunity to be guinea pigs for the student pathologists we never would have been able to learn the tools we needed to pull speech out of Don.
DeleteIt will be fun watching your kitchen come together, but a magic wand would be fun too.
I've heard of wedding crashers, but never a funeral crasher. What a great story!
ReplyDeleteHonesty, I think crashing funeral and weddings both are popular with people looking for a free meal.
DeleteWhat a good detective you were. You were right, what a memory he had to remember a four year old from his youth. That was a thread to keep you off the crashers list:)
ReplyDeleteIt helps to be both stubborn and patient when living with (or being) someone with a language disorder. For a long time I've wanted to put some of my blogs from that era into a hard copy book. Maybe after I move I'll finally do it.
DeleteAfter my middle son needed emergency brain surgery while he was in high school, his vocal cords were paralyzed so he couldn't speak. We were lucky that he could write words, altho, often it was difficult deciphering what he was trying to tell us so I can identify with the guessing game strategy you used! We were lucky that with therapy his vocal cords recovered and he was fine after several months - went off to college and eventually got his PhD in medical research!
ReplyDeleteIt's amazing how much the brain can heal itself. The same thing that kept Don from speaking kept him from writing. Glad your son had a good outcome.
DeleteThis was moving and full of love
ReplyDeleteWe were both lucky that Don didn't embrace the "why me?" mindset that happens when someone acquires a disability. Most survivors do but the ones who make peace with their "why me?" early on are quicker to put that energy to better use working on therapies and making the most of what they still can do. Don had a great sense of humor and that came through even without language. he was also very stubborn and wouldn't give on trying to make me understand.
DeleteYes! Aphasia was hard. I still have some, more when I'm tired, and it's frustrating, but it is getting (s-l-o-w-l-y) better. I'm very lucky that my caregivers don't just jump in and say it (what they think is the word) for me. Because, in addition to it not being the word I'm actually trying to say, it derails my train of thought, and since my stroke, I have only a one-track mind. You can, I'm sure, see the difficulty. But it's super hard to communicate that when one of your biggest problems is communication.
DeleteOh, yes, and each stroke survivor's aphasia is slightly different. We were lucky to have access to a college with a program for speech therapists who taught us lots of technics for prompting speech.
DeleteFuneral Crashing, well, you're one up on me then, I've Crashed some Parties but never a Funeral! My Mom once knew a Lady that attended every Funeral she knew about whether or not she knew the decedent or the Living there, she'd sincerely Cry up a storm, it just always Touched her Deeply I guess and so she was always Welcome even tho' nobody knew her and didn't dare to ask. *LOL*
ReplyDeleteEven when you know the deceased, at a good funeral or memorial you learn new things about them.
ReplyDeleteI love the way Don's personality comes through in these posts. -Jean P.
ReplyDeleteHe had a real special way of communicating without speech that endeared him to people who took the time to interact with him. It was like being on a game show when he wanted to tell us something. After a while you didn't know who was trying to queue words out of who.
DeleteYou were most adept at eliciting meaningful communications from your husband. His dual issues of loss of language coupled with the difficulty making the precise movements to produce desired and/or intelligible words can be especially challenging, frustrating to the person who has those problems and their loved ones/caregivers. Humor coping with the situation goes a long way helping all to retain whatever sanity they have left in what sometimes seems like an insane situation, Enjoyed this story from which much can be learned by others encountering people with your husband’s speech issues. Having worked professionally with many patients having such problems i know what a challenge is presented. Others might well benefit from having some of your choice stories and experiences in a book since you write so entreatingly well.
ReplyDeleteI think enough time has passed since Do died that I could put a self-published book together of blog posts like this and of some of our speech classes. I've wanted to but emotions got in the way when I tried it before. I kept two blogs back in those days, one very detailed of how the student speech pathologists were being taught to diagnosis and set up therapy sessions for Don. And the other you've had a taste with my reruns here recently. I really do think they helped others as much as it helped me to write those post.
DeleteP.S. Thank you. Your opinion means a lot, given how you spent your professional life in the field.
DeleteI'm sure it was hard trying to communicate with Don at times but sure seems like you did your best and I'm sure that made him happy.
ReplyDeleteHe had a high IQ and our appreciation for one another grew stronger as we worked hard at his speech therapies.
DeleteYour post was both moving and very funny! Love the thought of being an accidental funeral crasher! As my better half and I are in our 60s and both from very large families, we go to quite a lot of funerals. He always says, if you're wondering whether you should attend or not, then you must attend. Families are always pleased that you're honouring their loved one.
ReplyDeleteYour husband is right. It helps with the grieving process to see how may others cared enough to show up.
DeleteDear Jean--I had to go to a dictionary to look up aphasia and apraxia--both new words for me. Living for 12 1/2 years with your husband after his massive stroke had to be filled with such a range of emotions. I would suspect that it was a long span of grieving. But also--possibly--a course in what love really means. Your story of the obituary and the four-year-old Don had known all those years ago just makes me muse on what our brain holds onto. We touch lives sometimes briefly and yet the moment remains. There is for me in this story an affirmation of the Oneness I so believe in. Peace.
ReplyDeleteOh, yes,s the range of emotion after any sudden onset of a disabilities brings you through a grieving process before you get to acceptance and start working on improving where you can. I credit keeping a gratitude journal in the beginning for helping me push through the loses we both faced with his stroke. I found my caregiver humor that way by actually looking for the positives in our days.
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