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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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Hi! My husband went to respite care today, and that gave me few hours to myself. 😊
Thanks
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1 ReactionBless you, Bless you, Bless you. And, him. I know this isn’t helpful. But, so sorry.
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2 Reactions@marketlink
Hi, I thought I'd already replied but at the risk of replying twice, I did get a respite when I dropped my husband off at respite care yesterday for a few hours, and that gave me some time to relax and not be on call for a bit.
Thanks ☺️
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2 ReactionsJudy, I am so sorry. Sometimes it’s all just too much…I am thankful to have a Respite program too that my husband can attend for four hours twice a week. It helps me make it through the week, especially on hard weeks, and those are coming around pretty regular. The good Lord said he wouldn’t put more on us than we could handle…hang in there and find help wherever you can. We are all in this together. I’m praying for you.
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5 Reactions@labrown
Thank you so much for your supportive words.
I hope you are well. 🦚
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1 ReactionI am feeling so much better when I see others getting frustrated with their loved ones! It is so hard to see them being so confused and getting angry or agitated If we dare say or do anything! I now don’t know how to feel about anything as I just buried my spouse and my brother! They both were wonderful men and made me the happiest and bought out the fun side of me! Just know that I have been there and done this as well! Mostly my spouse ! Give yourself a break! Caregivers are extremely helpful and helpful and know what he or she needs! I had a friend who came to give me time off! Now all I hear is silence! I say that that the circle of life goes backwards and it is so hard ! Hugs and prayers your way!!
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11 Reactions@sillyblone
Thank you so very much. I am very sorry for your deep state of grief for 2 loved ones. 🫂
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3 Reactions@sillyblone
Prayers for those who haven't loved, who haven't been loved, who will never know this ineffable grief. I think we are so lucky.
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6 Reactions@judimahoney Thank you for your support! I have been acknowledged by you more than I can count! I just know that the sadness is horrible! I feel like I am numb! Trying to carry on is the only way I can honor them both! I cry hearing our song! When I see his pictures around our home! I will not ever hide them away! I had chosen at my spouses celebration of life to share the man I knew! The first time I saw him, the first time he kissed me, the first time he took me skating and he was really great at it! The first time he gave me flowers which were always roses! He kept me and our family safe and we all loved him! But what really sticks out is when he and I were married! He was so handsome ! I shared a lot more and I did without crying! He was the sweetest man and always loved me and I will always call him “the love of my life”! I have chosen to try to be positive and know that he no longer is suffering! My brother was wonderful ! I was the oldest and I remember when he was placed in my arms by my Mom! I could not believe she let a 7 yo little girl hold her precious first boy! It makes me smile just writing it! Again thank you! You don’t know how it lifted me by sharing a little of my sweetheart! 🫂💕
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9 Reactions@gently I totally agree! We are realizing at the end that we were not always the best that we could be !
We try to be our best.. but that being said we are human and not perfect! I know he never had to worry that I had his back! I always questioned if I felt that him or myself was being dismissed or not listening to our concerns! I tried to be clear and decisive! I think some of the physicians thought I was too old to question them! No, sorry I was his advocate and if it wasn’t clearly stated I would question them! Most of the doctors were very nice! Some not so much! Sometimes my husband would speak up and I cheered him to question if he thought that they were rude to his wife! We would talk about how we asked questions and their responses! Never feel that u cannot ask questions! That is our right to a fair answer and I tried to not make anyone feel small! My spouse came first in my life and I will never feel like I messed up!
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5 Reactions