Janis J
Active member
- Joined
- Jan 7, 2016
- Messages
- 54
- Reason
- Lost a loved one
- Diagnosis
- 05/2015
- Country
- US
- State
- Oregon
- City
- Portland
I missed Wednesday, but because of that I get to respond to Adconley.
We continue to get new stuff faster than we can learn to use it: the power wheelchair, a suction machine, and replacement of our semi-powered hospital bed with one that also has a control to raise and lower the whole thing with buttons instead of a crank. The wheelchair arrived at the same time as the return of the rains so we haven't been outside with it yet, but it will be lovely to go for long "walks" in the neighborhood again. The friend who was working on a raised platform for the recliner finished it, and now Douglas can get in and out of it much more easily. He's still in a cheerful mood, which makes everything so much easier.
Adconley, Douglas was diagnosed last May and had a PEG placement in December. Within six weeks he was using it for almost all nutrition, although he still does some recreational eating. Douglas hasn't been able to use his arms and hands for much of anything for a few months now. He's not embarrassed to ask for a straw for his beer, wine, coffee, or soup in a restaurant, and often takes a professional caregiver to restaurants to feed him solid food. His voice is getting more difficult to understand, even for me. His legs are still strong, although he tires quickly. He now uses AVAPS all night every night but doesn't need it during the day. He's been fairly stable recently and new equipment and meds have actually made his life easier.
I feed very fortunate that ALS started when our kids were grown up and after I had retired, so I don't have the pressure of needing to work while also being a caregiver. As I said above, it's also easier when Douglas is feeling good about life, which he wasn't for the first several months. Even so it's very hard to take over all of the things that he used to handle, plus feed and medicate him a few times a day plus bathe him and take care of his teeth and pull his pants up and down at the toilet (I love our bidet toilet seat!) and scratch his itches and set up TV shows and help him read and write emails and and and. We have caregivers here 3 times per week: one for two eight-hour shifts that we pay for, and another from a different agency for a six-hour shift funded by the local ALS Association. I had hoped to use that time for myself, which occasionally works but usually I end up running errands or endless rearranging of the house.
Like everyone here it helps me a lot to read posts from others and to be able to rant occasionally, even if my rants seem so much less significant than those of others.
Janis
We continue to get new stuff faster than we can learn to use it: the power wheelchair, a suction machine, and replacement of our semi-powered hospital bed with one that also has a control to raise and lower the whole thing with buttons instead of a crank. The wheelchair arrived at the same time as the return of the rains so we haven't been outside with it yet, but it will be lovely to go for long "walks" in the neighborhood again. The friend who was working on a raised platform for the recliner finished it, and now Douglas can get in and out of it much more easily. He's still in a cheerful mood, which makes everything so much easier.
Adconley, Douglas was diagnosed last May and had a PEG placement in December. Within six weeks he was using it for almost all nutrition, although he still does some recreational eating. Douglas hasn't been able to use his arms and hands for much of anything for a few months now. He's not embarrassed to ask for a straw for his beer, wine, coffee, or soup in a restaurant, and often takes a professional caregiver to restaurants to feed him solid food. His voice is getting more difficult to understand, even for me. His legs are still strong, although he tires quickly. He now uses AVAPS all night every night but doesn't need it during the day. He's been fairly stable recently and new equipment and meds have actually made his life easier.
I feed very fortunate that ALS started when our kids were grown up and after I had retired, so I don't have the pressure of needing to work while also being a caregiver. As I said above, it's also easier when Douglas is feeling good about life, which he wasn't for the first several months. Even so it's very hard to take over all of the things that he used to handle, plus feed and medicate him a few times a day plus bathe him and take care of his teeth and pull his pants up and down at the toilet (I love our bidet toilet seat!) and scratch his itches and set up TV shows and help him read and write emails and and and. We have caregivers here 3 times per week: one for two eight-hour shifts that we pay for, and another from a different agency for a six-hour shift funded by the local ALS Association. I had hoped to use that time for myself, which occasionally works but usually I end up running errands or endless rearranging of the house.
Like everyone here it helps me a lot to read posts from others and to be able to rant occasionally, even if my rants seem so much less significant than those of others.
Janis