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Monday night we had another diarrhea episode. This was NOT in the toilet or commode. I spent the better part of the night cleaning him and the power chair, floor, and bed.
Two doctor visits yesterday - a video visit with the ALS clinic, and an in-person visit with the pulmonologist. The ALS clinic included the same cast of characters, encouraging me on the great job I'm doing keeping my PALS going. He's had a lot of mucus from the nasal pillows, so we put that on the list for the pulmonologist. And of course the very helpful social worker whose sum total of advice for me is to "be mindful."
The pulmonologist said some people just don't tolerate the nasal pillows as well as others. It may be that the full face mask is more comfortable. Then, after looking at my PALS data, he told us that he can go on for a very long time on bipap, possibly many years. He then said, "I'm sorry. ALS is a tough disease."
My PALS is currently all but paralyzed, cannot speak, cannot eat much, cannot do any of the sports he dreamed of doing upon retirement. We both worked so hard and sacrificed during our working lives and now it has come to this. As a CALS, this is feels very cruel. I'm already so exhausted and don't know if I have the stamina to go another decade at this. I'm trying to salvage some kind of life out of it but the thought of another decade stretching ahead of me is awful.
V
Two doctor visits yesterday - a video visit with the ALS clinic, and an in-person visit with the pulmonologist. The ALS clinic included the same cast of characters, encouraging me on the great job I'm doing keeping my PALS going. He's had a lot of mucus from the nasal pillows, so we put that on the list for the pulmonologist. And of course the very helpful social worker whose sum total of advice for me is to "be mindful."
The pulmonologist said some people just don't tolerate the nasal pillows as well as others. It may be that the full face mask is more comfortable. Then, after looking at my PALS data, he told us that he can go on for a very long time on bipap, possibly many years. He then said, "I'm sorry. ALS is a tough disease."
My PALS is currently all but paralyzed, cannot speak, cannot eat much, cannot do any of the sports he dreamed of doing upon retirement. We both worked so hard and sacrificed during our working lives and now it has come to this. As a CALS, this is feels very cruel. I'm already so exhausted and don't know if I have the stamina to go another decade at this. I'm trying to salvage some kind of life out of it but the thought of another decade stretching ahead of me is awful.
V
affected
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I totally hear you V. The idea of a decade of such intense care, and we know that the emotional energy of caring is really intense, would scare me very much. I have found since my Chris died that I have such a different outlook on what is important in life.
I wish I had answers. Doing a great job as a CALS means we sacrifice a little bit of ourselves every day. You may have to look at what you can realistically sustain and for how long. There isn't much harder to face and try to balance than this.
I wish I had answers. Doing a great job as a CALS means we sacrifice a little bit of ourselves every day. You may have to look at what you can realistically sustain and for how long. There isn't much harder to face and try to balance than this.
- Joined
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Hi V,
Oh gosh, it's so tough isn't it? My husband's pulmonologist said the very same thing. That my hubby, even though his SNIF is 15, could last years on being that low. I'm tired, too, and the thought of several more years of caretaking scares me. My husband, however, wants to live for years to come even if all his faculties are taken away. Because I know he wants to fight to live so badly I, of course, support him, even though the thought exhausts me. I'm not sure what is more draining, the physicality of this disease or the emotional toll every loss brings.
I'm not sure I have a point in my post, but more that I empathise with your situation. On a side note, if the doc OKs it for your hubby, I give mine 1 immodium tablet every morning because if I do not, we constantly fight diarrhea. The pulmonologist has assured us that only one is not detrimental, but it really is person specific because constant immodium use can make the bowels "lazy". Not sure what that means, but the doc said just one a day shouldn't do that. So, if the doc says OK, that could decrease clean ups for you.
Big, huge cyber hugs to you, V. You're a gem who is doing an amazing job for your husband.
J
Oh gosh, it's so tough isn't it? My husband's pulmonologist said the very same thing. That my hubby, even though his SNIF is 15, could last years on being that low. I'm tired, too, and the thought of several more years of caretaking scares me. My husband, however, wants to live for years to come even if all his faculties are taken away. Because I know he wants to fight to live so badly I, of course, support him, even though the thought exhausts me. I'm not sure what is more draining, the physicality of this disease or the emotional toll every loss brings.
I'm not sure I have a point in my post, but more that I empathise with your situation. On a side note, if the doc OKs it for your hubby, I give mine 1 immodium tablet every morning because if I do not, we constantly fight diarrhea. The pulmonologist has assured us that only one is not detrimental, but it really is person specific because constant immodium use can make the bowels "lazy". Not sure what that means, but the doc said just one a day shouldn't do that. So, if the doc says OK, that could decrease clean ups for you.
Big, huge cyber hugs to you, V. You're a gem who is doing an amazing job for your husband.
J
Mary2
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I feel what you are saying Vitsra. I am scared as well. Stamina and the emotional toll are huge concerns. I wish you could change social workers. I admire your patience with her. I probably would have been sarcastic with her by now!
rmt
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V, sending you a virtual hug. I always want to strangle the social workers with their "be mindful" garbage. Probably good our appointments are virtual.
My husband's G-tube is such a big improvement. He's gained over 5 pounds in less than a week. Clearly he was very dehydrated and malnourished. But I wish he was more on board with needing to use it for the majority of his nutrition and hydration. He keeps wanting to try to eat and drink by mouth, which means he barely gets anything in. Then it is 6pm and he hasn't had nearly enough calories or water, and then we are playing catch-up trying to make up for the lost time.
And he's so frustrated that he needs the feeding tube. I wish he could just accept that he needs it and move on and start embracing life again. He's already wasted a year spending all of his time trying to eat by mouth. How much more of his/our life is he going to waste? I feel like we are on borrowed time because he only has bulbar symptoms so far. I want to get the most out of this time, but he is so focused on the negative that he doesn't seem to enjoy anything. I'm sure he is depressed but he won't take anything for it. It is all so exhausting. I'm hoping that as he recovers from the tube insertion his mood will improve. At least he doesn't look like he is about the pass out all the time anymore!
My husband's G-tube is such a big improvement. He's gained over 5 pounds in less than a week. Clearly he was very dehydrated and malnourished. But I wish he was more on board with needing to use it for the majority of his nutrition and hydration. He keeps wanting to try to eat and drink by mouth, which means he barely gets anything in. Then it is 6pm and he hasn't had nearly enough calories or water, and then we are playing catch-up trying to make up for the lost time.
And he's so frustrated that he needs the feeding tube. I wish he could just accept that he needs it and move on and start embracing life again. He's already wasted a year spending all of his time trying to eat by mouth. How much more of his/our life is he going to waste? I feel like we are on borrowed time because he only has bulbar symptoms so far. I want to get the most out of this time, but he is so focused on the negative that he doesn't seem to enjoy anything. I'm sure he is depressed but he won't take anything for it. It is all so exhausting. I'm hoping that as he recovers from the tube insertion his mood will improve. At least he doesn't look like he is about the pass out all the time anymore!
Mary2
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RMT ...I hope your husband will accept the tube and use it. At least he is gaining weight. My husband is losing weight. He can still eat but does not feel hungry. He is in a wheel chair and I need to determine how to measure his weight loss. By taking measurements I would suppose. My guess is that he has lost 20 to 25 pounds. We have a virtual meeting with the NP on June 10. We have added Boost to his dinner. Dinner seems to be the meal he does not eat enough of.
Mary2
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Yesterday was my mother's 90th birthday in Boston. There was a family celebration under a tent in my brother's back yard. Naturally I did not fly up to go. I hate going to those family gatherings alone anyway. My son went. Tomorrow the aide comes. I guess if we are going to go out it would be today. It is hot here. I don't know where we would go...it is just easier to stay in. I could cry.
Jrzygrl
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Sending big hugs Mary. I remember feeling the same. As if the world was passing us by. I hope you can get out and at least get a bit of fresh air. It's been cold and rainy here all weekend.
rmt
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Sending hugs to you Mary. Thinking of all that we are missing and "what should have been" is so overwhelming and depressing. Do you have the "Very High Calorie" Boost? It has 530 calories in 8 ounces. That has really helped get more calories into my husband. I have no idea how it tastes, but through his tube it seems to be well tolerated.
Things are going better here. We had a talk about what my husband wants, and what it will take for that to happen. He really wants to gain the weight back and seems to have accepted that the only way to do that is to get a lot of nutrition through the tube, and then just eat for pleasure. The last few days he is the one driving the tube feeding schedule and seems much more motivated. I think it also helps that his stomach isn't cramping anymore as he heals from the insertion procedure. His mood is way better and he seems much more like his old positive, happy self. We talked about what a great summer we can have and he seems excited about that idea. Fingers crossed this continues.
I must admit, I totally melted down the night before our talk. I was just so sad about everything. I went to our room to let it all out, but my husband could hear (our house isn't that big) and came in. I think it finally hit him how everything going on with him, is also affecting me, just in a different way. But we had a good hug and cry and I felt (and still feel) closer to him than I have in a long time.
Things are going better here. We had a talk about what my husband wants, and what it will take for that to happen. He really wants to gain the weight back and seems to have accepted that the only way to do that is to get a lot of nutrition through the tube, and then just eat for pleasure. The last few days he is the one driving the tube feeding schedule and seems much more motivated. I think it also helps that his stomach isn't cramping anymore as he heals from the insertion procedure. His mood is way better and he seems much more like his old positive, happy self. We talked about what a great summer we can have and he seems excited about that idea. Fingers crossed this continues.
I must admit, I totally melted down the night before our talk. I was just so sad about everything. I went to our room to let it all out, but my husband could hear (our house isn't that big) and came in. I think it finally hit him how everything going on with him, is also affecting me, just in a different way. But we had a good hug and cry and I felt (and still feel) closer to him than I have in a long time.
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I think that sometimes we feel we 'have to be strong' to the point we might seem to our PALS to be cold or not have feelings. We can feel we lose so much of our relationship, and yet sometimes a little melt down and opening up of our feelings can bring that back a little.
Mary it is hard isn't it. Going out is a huge effort. I hope you can find ways for that effort to bring you both some rewards so that it is effort you both want to make.
It can truly seem like the world is just going on and we are in a warp of some kind.
Mary it is hard isn't it. Going out is a huge effort. I hope you can find ways for that effort to bring you both some rewards so that it is effort you both want to make.
It can truly seem like the world is just going on and we are in a warp of some kind.
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Mary, I'm sorry you missed your mother's birthday. It is OK if you cry, I certainly do it enough. It does help to get out of the house. I try and take my PALS somewhere every Thursday if possible. Even though sometimes he doesn't feel like it and sometimes I don't, it helps both of us.
RMT, I have frequent meltdowns. I am sorry to admit that I do it in front of my PALS. I have always been emotional so he understands. It is OK. This is a really hard journey for both of you.
This weekend was really really tough on my. I was on my own caregiving from Saturday noon until yesterday morning. During that time my PALS had 5 diarrhea episodes. I had to transfer him into the shower twice to clean him and do countless loads of laundry. He has no strength at all so cannot help position himself. I was exhausted yesterday. I'm considering getting more help in even though it's expensive. I don't know how else I will get through this in the long term, as it will likely continue on this way for years.
I went to my painting class, which is now being held outdoors at my fellow student's beautiful garden. His wife came out to chat with me and told me that her friend's husband had ALS. She told me "it got so bad he couldn't feed himself." My PALS has not fed himself in over a year.
V
RMT, I have frequent meltdowns. I am sorry to admit that I do it in front of my PALS. I have always been emotional so he understands. It is OK. This is a really hard journey for both of you.
This weekend was really really tough on my. I was on my own caregiving from Saturday noon until yesterday morning. During that time my PALS had 5 diarrhea episodes. I had to transfer him into the shower twice to clean him and do countless loads of laundry. He has no strength at all so cannot help position himself. I was exhausted yesterday. I'm considering getting more help in even though it's expensive. I don't know how else I will get through this in the long term, as it will likely continue on this way for years.
I went to my painting class, which is now being held outdoors at my fellow student's beautiful garden. His wife came out to chat with me and told me that her friend's husband had ALS. She told me "it got so bad he couldn't feed himself." My PALS has not fed himself in over a year.
V
rmt
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V, sorry you had such a hard weekend. More help sounds like a good plan. It is so hard when you know your current life just isn't sustainable. That's how I had been feeling before my husband got his feeding tube. I wasn't sure how we were going to make it through each day, let alone months or years. It is so overwhelming when you know you can't keep going the same way forever. Maybe more help would make things at least a little more manageable. Your outdoor painting class sounds lovely!
My husband is now thrilled to have his feeding tube! He feels so much better, has more energy and is in a great mood all the time. We are working in incorporate more blended foods (instead of formula), but he is tolerating the formula just fine so we aren't feeling a big rush to switch over. He's gained a bunch of weight already and looks so much healthier. He lost a lot of weight between when he decided to get the tube and when they could put it in, and he was looking so emaciated! Thankfully, he has bounced back quickly. And all the cramping and pain are gone. This week was the best week we've had in a long time.
My husband is now thrilled to have his feeding tube! He feels so much better, has more energy and is in a great mood all the time. We are working in incorporate more blended foods (instead of formula), but he is tolerating the formula just fine so we aren't feeling a big rush to switch over. He's gained a bunch of weight already and looks so much healthier. He lost a lot of weight between when he decided to get the tube and when they could put it in, and he was looking so emaciated! Thankfully, he has bounced back quickly. And all the cramping and pain are gone. This week was the best week we've had in a long time.
