Husband refusing to go to clinic anymore
- Thread starter Gmathyme
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Wilson2009
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There are several text-to-speech apps available for smartphones. On my iPhone, I use Speech Assistant, which allows you to save phrases in categories and will deliver text as speech to a caller allowing him to answer or even place a call. It can be frustrating at first, but practice does make it easier.
You mentioned he is using paper and pen to communicate. Might want to consider getting him a whiteboard. I use them as I find writing faster that typing in most instances when answering questions from doctors, nurses, and other medical professionals.
You mentioned he is using paper and pen to communicate. Might want to consider getting him a whiteboard. I use them as I find writing faster that typing in most instances when answering questions from doctors, nurses, and other medical professionals.
The white board is a good idea, especially when talking with doctors and not a lot of paper to carry around.I do like the paper and pen at home because he can read it over again later. Sometimes it takes him a long time to process information. Then the next day he can re-read it and then hopefully, we don’t have to spend a whole lot of time on the same subject again.
I can see where the speech assistant on an iPhone would be good but he is very hard of hearing on top of not being able to talk. Before he lost his speech he would answer the phone on telemarketers and he had them repeating themselves so much they hung up on him. Kept the spam calls down.
I can see where the speech assistant on an iPhone would be good but he is very hard of hearing on top of not being able to talk. Before he lost his speech he would answer the phone on telemarketers and he had them repeating themselves so much they hung up on him. Kept the spam calls down.
cb81042
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I see a lot of similarities with how you described your husband’s lack of understanding about treatments and general dislike of doctor/nurse/medical visits. My husband was very much the same. He had FTD along with bulbar onset ALS and the cognitive problems made it very difficult for him to understand any medical decisions. I’m also laughing a little bit at the part where you described his interactions with telemarketers - my husband used to do the same thing and you could hear them on the other end of the phone getting flustered that their script didn’t go as planned when he was on the other end of the call.
Have you had the difficult discussion with your husband about what his goals of care are? Sometimes when we see refusal of care, it’s from a place of wanting to avoid suffering. My husband was adamantly against all of the typical life-prolonging interventions (bipap, feeding tube, even a wheelchair and other assistive devices) so it was easier to take a comfort-based approach knowing what his priorities were. His priorities were “no hospital, be comfortable at home.”
The VA has a lot of resources for either path you choose - and if you need help having the discussion, his primary care provider should be able to consult palliative care to open up the discussion about goals of care.
Have you had the difficult discussion with your husband about what his goals of care are? Sometimes when we see refusal of care, it’s from a place of wanting to avoid suffering. My husband was adamantly against all of the typical life-prolonging interventions (bipap, feeding tube, even a wheelchair and other assistive devices) so it was easier to take a comfort-based approach knowing what his priorities were. His priorities were “no hospital, be comfortable at home.”
The VA has a lot of resources for either path you choose - and if you need help having the discussion, his primary care provider should be able to consult palliative care to open up the discussion about goals of care.
Well, I have been unsuccessful in talking to him about what he would like as he progresses. I know before all this happened he never wanted to be on any life support system but to to have him put it in writing he just doesn’t seem to see the need to think about it. His nurse has tried talking to him about it but he got agitated. He never was much on planning ahead.
The more I have been thinking about it I think he probably has some cognitive issues Sometimes he seems like his old self except for the ALS other times I feel like I’m talking to a brick wall. I’ve even written things down because he can’t always hear me and he just looks at the paper and I get no response. I haven’t always handled it well but I’m trying to understand he probably can’t help it.
He did finally agree to go to the clinic and was all set to go but we had a bad storm system go through and it is a long drive so I ended up canceling it and making a different day next month. So I worried about that for a week for no reason. Hopefully when the next appointment comes up things will go better.
The VA asked me if he would be interested in palliative care but I think right now anymore “visitors “ would not be good. He barely tolerates the nurse. They were very understanding.
I’m sorry about your husband I see he was diagnosed just a few months before my husband. I know you must be going through a hard time.
The more I have been thinking about it I think he probably has some cognitive issues Sometimes he seems like his old self except for the ALS other times I feel like I’m talking to a brick wall. I’ve even written things down because he can’t always hear me and he just looks at the paper and I get no response. I haven’t always handled it well but I’m trying to understand he probably can’t help it.
He did finally agree to go to the clinic and was all set to go but we had a bad storm system go through and it is a long drive so I ended up canceling it and making a different day next month. So I worried about that for a week for no reason. Hopefully when the next appointment comes up things will go better.
The VA asked me if he would be interested in palliative care but I think right now anymore “visitors “ would not be good. He barely tolerates the nurse. They were very understanding.
I’m sorry about your husband I see he was diagnosed just a few months before my husband. I know you must be going through a hard time.
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Maybe a whiteboard he can see from his bed and wheelchair, as others have said. More time to process if you leave the same message up all day. With a magnetic one, you can include photos, drawings, things he might like.
