His Nutrition and My Mental State

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Believer

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My husband was diagnosed with bulbar onset ALS in September. On Sunday we had to go to pureed food because of a bad choking spell. We are in the process of getting a feeding tube. In the meantime, he has lost 4 lbs this week. He had already lost over 20 lbs since June. Milk products make him gag unless I put fruit or something in his shakes. He says, if no fruit etc, it feels like there is a coating in the back of his throat. I am trying plant based shakes but I am having trouble getting him enough calories. His speech is such that you cannot understand him. He is using a white board. His communications device is due any day. He has a wonderful speech therapist that has been preparing him for the device.

I do ok most of the time. I have a deep faith and we know that he will spend eternity with Jesus. However, sometimes I just fall apart. Sometimes my heart just breaks. Sometimes I just feel inadequate. Sometimes just sad.
 

rmt

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Sorry to welcome you here, but I'm glad you found this forum. The people here are amazingly supportive and helpful.

My husband is also bulbar onset. He has lost his speech entirely and mostly uses white boards and hand signals. He uses his tablet some too but he isn't very good with technology and doesn't seem to want to try to learn it. Due to choking issues, he got a feeding tube in May and it improved his/our quality of life so much. He was losing a lot of weight but gained it back once he got the feeding tube. While "real food" is definitely healthier, for extra calories he started having Boost Very High Calorie drinks. They have 530 calories in 8 ounces, so they really pack in the calories. We get them from Amazon. I have no idea how they taste, but my husband seems to like the way he feels after having one.

I would guess that all of the CALS can relate to how you are feeling. It is one of the things I love about this forum. It is nice to have people that understand what we are going through. Sometimes I can hold it together, but sometimes I fall apart. It is so hard to think about all the plans we had for the future that just aren't going to happen. And I totally relate to feeling inadequate. I try to be a good caregiver and wife, but I feel like I fall short all the time. I get frustrated and miss just being his wife and friend. We are trying to enjoy the time we have as much as possible, but even in the best moments there is always a feeling of sadness lurking just under the surface.
 

affected

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You could make his shakes on coconut milk and cream with fruits and peanut butter and chocolate - that would be calorie packed and no thick feeling in the throat.
Definitely keeping up the calories for now is really important.
I hope you can get the tube in asap. Did he resist having it put in early to prevent being in crisis?
No judgement, just wondering.
My husband did this and was emaciated and dehydrated by the time he said he was ready for the tube.
He never did adjust well to it as his whole digestive system had slowed down.

I'm glad you joined here, as we do understand all the things you face, both the practical things and the feelings of a CALS facing this and not being able to fix it all. Sometimes falling apart is needed, to get things back together again for the next day. 💚
 

lgelb

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A sad welcome, Believer. Glad to have you while sorry you are here.

Besides coconut milk, oat milk may be less "clingy." It is different for different people. Depending on his tolerance, any nut butter, not just peanut, could help, raw eggs, thickening with cornstarch or rice flour to make more of a pudding texture when shakes get boring, etc. Besides bananas, canned fruits like peaches and pears when pureed can be good, and applesauces of different flavors, since you don't want anything with seeds or bits or fibers.

Best,
Laurie
 

Believer

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TX
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GRANBURY
Thank you for the words of encouragement. I wouldn't say my husband resisted a feeding tube, I think the need just came so quickly. I will try some of your suggestions for shakes. The scheduler is suppose to call on Monday to schedule the surgery. We have already had the televisit with the surgeon.
 

affected

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Thanks, I didn't want to sound judging as I can see he was only just diagnosed, so the need has been sudden.
Hopefully they can schedule him in quickly as it's such a quality of life changer for you both.
Another tip is don't feel you have to feed him super healthy.
I totally agree that eating well is always best, but at the moment calories are king. You don't want him losing a lot of weight, and PALS can lose weight really fast, but don't always put it back on well.
So if he can eat puddings, any kinds of snacks that once you thought were something to go easy on, encourage him to just keep the calories coming. Once that tube is in, you can start to relax a little and look at good nutrition options for the longer term.

Keep us updated please 🙃
 
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