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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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Judy, I have an idea of how you are feeling. We always tried to get away for our anniversary. It falls on Feb 14 so it’s always been a little extra special to us. This year, our 45th, I am sad to say there was no special trip. My husband no longer recognizes special days and as you said so much is involved in planning. I am so sorry you had to cancel your plans for celebrating all those wonderful events with your husband. Maybe, you could still have a special night? Have you thought of doing something at home…maybe plan a special meal to have catered in with candle light and soft music? Just a thought. ❤️
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2 Reactions@sillyblone Thank you for this beautiful post. Your words regarding your husband’s celebration of life really touched me and it gave me ideas to tuck away for whenever our time comes. Like you, my husband is the love of my life, and when the times comes I want him remembered as the wonderful, caring man he was…not the man this disease has made him to be. 😔
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2 Reactions@labrown
Yes, I will make a special, modified meal here at home and we'll hopefully enjoy each other's company.
My husband doesn't engage much, no more conversation, but we will celebrate in some fashion.
Thanks 🤗
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5 Reactions@labrown Amen! I was able to show the funny things! A lot of those that attended were my husband’s family and they certainly didn’t know him like I did! They wanted to remember the very young man he was and had no idea how he had changed in his approach with life and especially how he loved us! It occurred to me and I believe that I was prompted to say what I did to take the heavy feelings in the church out! Sadness vs. Happiness was what I felt was appropriate at that time! Also included some of those moments that others had seen from him! I actually saw laughter and smiles! It warmed my heart! I am glad that they saw it from me! Several of them either texted me or spoke with me ! I knew that when he was placed in the ground everyone would been crying and solemn! 😔
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5 Reactions@judimahoney I understand about those quiet dinners...conversation is what, I think, I miss the most...
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8 ReactionsJudi, I am so sorry for the heavy load you are carrying. You are doing an amazing job of caring for your husband’s special needs. I can understand how you feel about, what should be, a very special celebration. My husband and I also have an anniversary coming up. I have decided that I will celebrate it for the both of us, in whatever way will give him some joy. For us, our anniversary had evolved into cards, and sharing pound of chocolate covered strawberries from a local candy store. So, I’m not sure about the card because last year there was not much reaction…he really just didn’t get what it was about, and that made me sad. So, I will get the strawberries, that will give him pleasure, and that will give me joy…win win. I hope you can find some joy in your special day.
I wish you a Blessed peaceful day. Happy Anniversary!
This will be our 64th!
Judy (with a y)
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9 Reactions@jniels
Happy 64th! Now I'm craving chocolate-covered strawberries, and heck, throw some champagne in the mix then we can really kick our heels up!
Congratulations to you on this amazing milestone. Very wonderful that you are modifying your celebration to make it special. 👏
Take care. 🌹
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3 Reactions@1gypsy, there is no selfishness in wanting those things. Sending you a virtual cup of tea and a hug.
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