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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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Oh boy! @judimahoney this IS a lot to add to your daily life. I know I feel similarly whenever he has a doctor’s appointment and we add another medication, therapy, daily activity, etc. into my already packed (and at times overwhelming) routine. Seriously?? I also know that with time and practice, somehow I always seem to make the modifications and add that “one more thing” into the mix. Sometimes it means stopping something else that is no longer useful or is now a lower priority. But in your case, this additional burden at meals x 3, every day, is a bit much, for sure. I support others comments that getting some additional help, even if it is only a few times a week could be beneficial for you. Also, I have learned that sometimes medical professionals give you ALL the information and advice that sound great on paper but don’t always translate to your situation. With some time and practice you may find some ways to streamline the processes to make it more efficient and still be effective for your husband’s health and needs. We have incorporated daily practice virtually with the Parkinson’s Voice Project, this has helped him immensely with strength in his voice and swallowing. It is free and anyone can join. We started this after he completed his in person sessions with the speech language pathologist. It’s 30 minutes a day and I can really see a difference when he doesn’t do it for a few days. He is much harder to understand and he has more choking episodes with his food. It might be something to consider if it could be helpful in your situation.
Blessings on your journey
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7 ReactionsJudi-not only is this exhausting for you, it must be scary at times if he’s having so much difficulty chewing/swallowing. Good you were finally able to get the evaluation, but yet another thing to add to your plate. (So sorry-did not mean that pun, as it is certainly nothing to joke about). Sincere best wishes, as you navigate this new curve in the journey.
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3 ReactionsOh, Judi, so sorry you are going through this. As someone else responded, a hug doesn't seem like enough.
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3 Reactions@judimahoney If anyone knows how to do this - and deal with the continuing changes of this disease - you do. Please take care of you, too! Best, Karla
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2 Reactions@trishaanderson You drive, I'll bring the "Fellas" (Jose, Tito, Ben & Jerry)...
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4 ReactionsThank you for sharing with us. My heart goes out to you! We are giving you virtual hugs and I wonder if there is someone close to you that understands who can come over and give you a real hug. Is there a close restaurant that could deliver a meal that you could celebrate both could celebrate your special time with a fancy tablecloth and candles?
You are NOT alone and we all have had to give up so much. My husband and I celebrated our 50th Anniversary two summers ago in Alaska and my husband can no longer travel. Yesterday I was frustrated and angry because he was so irritable, slept the entire afternoon; he woke up and wouldn’t speak to me in the evening. Someone told me that if God takes you to it, He will get you through it. But how many years, Lord?
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4 Reactions@judimahoney I feel for you having to deal with this dysphagia. I know personally that it does require a lot of work to manage but you can only do so much. My mother had dysphagia at the end of her life. You are doing all that can be done to address this phase of your husband's dementia.
I think you were wise to cancel your reservations. I think that was needed to save your emotional strength for other things that will come up. I agree that it would have been so stressful for you to try to manage his eating difficulties in a strange place when that was not really needed to acknowledge the milestone.
What I have come to realize is that we don't have to repeat what we did to celebrate in the past. We can find new, meaningful ways to commemorate milestones in our lives. My husband and I celebrated our 45th anniversary in February with a special dinner at home then looking through all our picture scrapbooks to relive all the years we have had together. Just being together was enough for me. I will keep you and your husband in my prayers. We are on a really sad, frustrating, heartbreaking journey and you don't need to feel bad about venting on this page. We need to vent and ask for support as much as we can.
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5 Reactions@ocdogmom
Thank you so very much. Hearing from others that have been through this makes me feel so supported by you and others. Thanks again. 🦚
@kjc48
Thanks for standing next to me when I need it. 🌟
It is very hard and you are doing a great job. We all mourn that which was. It's sad.
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