My PALS is going on 9 months since diagnosis and since having a feeding tube installed a month and a half ago, she has been in a near constant state of anger and depression. To make matters worse, since the PEG procedure, she can no longer walk at all,... not even shuffle sideways. Also since the PEG surgery, she cries a LOT.
Went to a primary care doctor the other day and literally 85 to 90% of the time there was taken up with her crying. We originally went in for a medical complaint. Instead of dealing exclusively with that, the doctor wound up spending a lot of time telling us about the benefits of hospice care. The medical problem was addressed but it was clear the gently presented hospice advice the doctor gave her was as much about acceptance as it was about making the remainder of her life more comfortable.
As to mobility, the best she can do is stand next to something the proper height (with my assistance getting up) and lean on it. This means that all toileting, getting in and out of both the bed and wheelchair have to be done by Hoyer.
I don’t blame her at all for her feelings but I’m growing concerned at her inability to move on by accepting what is happening to her.
Though she agreed that it was time for the feeding tube, now that she has it, there are times she doesn’t want anything to do with it. It takes a lot of coaxing on my part to get her fed through the tube. I find myself being worn down and trying my best not to get angry, sometimes unsuccessfully, which in turn makes me feel guilty and just downright awful.
Mixed in with this swirl of ALS events is an active construction project going on to modify the house to make it more accessible to her. The audible chaos of saws, jackhammers, etc. has just added to the stress.
One of the stages of grief is acceptance. How long did it take your PALS to reach peace with ALS?
Went to a primary care doctor the other day and literally 85 to 90% of the time there was taken up with her crying. We originally went in for a medical complaint. Instead of dealing exclusively with that, the doctor wound up spending a lot of time telling us about the benefits of hospice care. The medical problem was addressed but it was clear the gently presented hospice advice the doctor gave her was as much about acceptance as it was about making the remainder of her life more comfortable.
As to mobility, the best she can do is stand next to something the proper height (with my assistance getting up) and lean on it. This means that all toileting, getting in and out of both the bed and wheelchair have to be done by Hoyer.
I don’t blame her at all for her feelings but I’m growing concerned at her inability to move on by accepting what is happening to her.
Though she agreed that it was time for the feeding tube, now that she has it, there are times she doesn’t want anything to do with it. It takes a lot of coaxing on my part to get her fed through the tube. I find myself being worn down and trying my best not to get angry, sometimes unsuccessfully, which in turn makes me feel guilty and just downright awful.
Mixed in with this swirl of ALS events is an active construction project going on to modify the house to make it more accessible to her. The audible chaos of saws, jackhammers, etc. has just added to the stress.
One of the stages of grief is acceptance. How long did it take your PALS to reach peace with ALS?