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I Am Reeling, Again 😪
Warning: this is a woe is me pity party post, so if you don't want to read my complaints you can stop now. If you want to hop on my pity bus, here we go... 🚌
My husband has had dysphagia (swallowing issues, common with dementia) for several months. His Doc referred him for a swallow study, and we waited 7 months for that appointment (we live in a small town and the hospital only does 2 tests/day, thus the long wait). Meanwhile he was coughing and gagging all the time till we got to see a speech and language pathologist finally last week.
So, this has thrown another wrench in the works and I pivot, again.
There are now tons of things he can't eat (not even bread unless it's made with specially modified ingredients), not quite to the puree stage but nearly. I even need to add a thickening agent to his drinks because thin liquids are problematic. He coughs when he drinks water or coffee, which I don't add the thickener to.
This past week has done me in! Modified foods and beverages, special textures required, slow pace of eating and drinking, and very small bites required. He also has to be monitored while he eats and drinks. I have had an educational week learning all of these new things. Because of his lack of impulse control, he had been eating VERY fast, huge bites and eating mindlessly (and yes, gaining weight). Now I have to sit next to him, cut up his food into tiny bites (because he won't), and physically keep him from shoveling too much food too fast into his mouth. I have started saying 'spoon or fork down' after each bite, or 'stop' if his bite is too big (he doesn't always listen so he gets a lecture about food safety).
This is like having a baby again. More of my precious time is now dedicated to meal prep and planning and sitting with him every time he wants to eat or drink.
Another time suck is that we have to do 8 sets of swallowing and muscle strengthening exercises daily; he can strengthen his swallowing muscle.
Meanwhile all this stress has made me feel sick.
Also very sad, at the end of the month we both celebrate our birthdays and our 40th anniversary. I made hotel reservations in a town we like about 3 hours from here, because every year we celebrate our 'big blowout' week in a special way.
I just canceled our reservation and our trip, because I don't know how I'd manage all the food and beverage modifications on the road. I am sad because I really wanted us to go out for a special meal to celebrate, and I had nightmares regarding what this process would be like sitting in a restaurant (too embarrassing).
Sometimes this is just too much to bear, so I write to unload on all of you who are also carrying big loads, sorry.
Thanks for reading if you made it through all this mess. I want Calgon to take me away. 😔
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After reading your post I set here for several minutes trying to form a response, but as I sit here with all kinds of thoughts jumbling through my head nothing seems like enough to help or express how to help you with your situation. I wish I could sit with you hold your hand and say it’s going to be okay… but really all we have is the solidarity of the people we share this group with. So I know I can’t physically hold your hand , but I hope mine or any body else’s post gives you a few minutes of peace and comfort.
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7 Reactions@akela09
Your words mean a lot, thanks for your support. 🫂
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2 ReactionsJudimahoney, you already know you need a break, so you can sit in a restaurant and not even enjoy a special meal without him for worrying about him. You think about a j tube, but don't want to interfere with his pleasures in eating. Swallowing is more about the quick coordination needed for swallowing liquids than the strength of the muscle. You might suspect that coordination isn't recoverable.
You might consider grinding every thing separately and putting it on the plate in bite size, so you can at least eat while he does, vigilantly none the less.
1 Corinthians 1-13 is mistranslated, the words even shifted in position.
This is more than anyone should bear.
The trap is that as you near the end of his life exhausted and torn you might fail to be as gentle and kind to this familiar stranger as your feelings for him would insist that you should be.
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3 ReactionsIt feels selfish, but I would love to once again have someone else to find an interesting restaurant, drive so I can be the passenger, be able to read and interpret a menu, order by himself, get the check and pay without help figuring it out, drive me home. I guess what I want is a date!
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8 Reactions@1gypsy
With virtual reality your date will be possible as an illusion. 😉
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2 Reactions@judimahoney I read this, this morning with sadness, and I like others, don't really know what to say to make this better. Even sending a virtual hug this morning, doesn't seem to be enough. My first reaction - at minimum - is to get help, to lighten your load and manage his meals and the 8 sets of swallowing and muscle exercises he has to now do. The other is to perhaps, puree all his food, freeze some of it, like I used to do for the grandbabies when they were born. You would still however, need additional in-home help to sit with him, to manage how much he's taking in. I remember my neighbor next door with dementia, shoveled her food in as well. So that was a challenge for the few of us caring for her. I feel sad over your post, Judi, that you had to cancel your anniversary/combined birthdays and that you're now in another stage you have to figure out and manage. Since you live remote, is this worth going to Mayo in one of their locations - or on a virtual call - and engaging a specialist who may have other helpful approaches you can use, so with the modified diet, he gets the nutrition he needs, and you get some relief in all of this.
Best, Karla
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3 ReactionsOh, Judi, I'm so sorry. I can't imagine adding all of that to what you already have to do. It's also so sad you had to cancel your celebration.
You deserve a ride on the Pity Bus; get in, I'll drive.
I'm always amazied at healthcare workers and family members that have such 'great advise" or "helpful suggestions" for what else we can add to our already stressful day.
Thinking of you,
Trish
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5 Reactions@kjc48
Good morning and thanks so much Karla. 🌹
We are attending weekly speech and language pathology appointments and getting the professional assistance we need from the therapist, as well as vital info from the internet and the IDDSI website (for dysphagia).
I lay in bed thinking of ways to make this easier, and I did buy some extra, small storage containers so I can freeze things like mashed potatoes and gravy for a quick thaw and heat and eat.
Anyway, we are always needing to stay one step ahead of this lousy game. I will call in some troops if need be, and I do take him to respite care once or twice a month as needed. He exercises there, gets some socialization and is amenable to attending; yippie and that's a win in my book.
Thanks again for staying in touch and your kind words. 🤗
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2 Reactions@trishaanderson
Thanks, Trish! And thanks for your offer to drive the bus! 😆 We used to say, 'I'm going crazy, want to come?' Crazy, pity bus and we're all on board laughing so we don't cry. 🥲
@judimahoney I am still feeling sad, as sometimes we just don't know what to say, other than thank you for your heartfelt share. We're all in this together.
Best, Karla
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