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Amandagall5

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May 9, 2015
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34
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Lost a loved one
Diagnosis
12/2012
Country
US
State
OK
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Midwest city
Hello.
My husband is in the end stages, can't do anything for himself, eats very little, no peg tube or vent etc. I was taking him out until about a month ago, I think he's too poorly for it now. I was curious as to what people's daily routines were at this stage.
I usually get him up around 8 and give him his breakfast and the first of his meds. The aide comes at 9 and showers and dresses him, then he's usually in the living room with the tv on. She gives him his lunch and does other things related to his care like teeth, laundry etc. sometimes I go out, other times I'm at home gardening or doing other stuff around the house. She leaves at 3 and I take over then, give him his dinner and his meds, and around 10pm he goes to bed. He can hardly talk now, and is not interested in the dynavox any more, he just exists every day. I talk to him about different things but he doesn't respond really, except to ask for water or repositioning his chair etc..
At this stage, is this routine similar to others?
Amanda.
 
sad

>give him his breakfast and the first of his meds.

how?

>he just exists every day. I talk to him about different things but he doesn't respond really, except to ask for water or repositioning his chair etc..

me & netflix :-(
 
Sounds about average...Mom would NEVER try and use ANY of the assistive things I bought or made for her. Those eye gaze computers are amazing, (unbelievable actually), but they can be a strain on the eyes.
 
Amanda, it does sound similar. I get my husband up at 8:30 and get him in his chair and have coffee with him. the nurse gets here at 9:30 and I leave for work. she baths him, does all his personal care, feeds him lunch and then lays him down at 3 for a nap. I get home at 6 and get him up, make dinner and feed him, do more personal care and then watch tv with him until 12 when we go to bed. during the day he likes to work on the internet on facebook and right now he has been active editing pictures in photoshop.

We don't have a lot of personal interaction--it is all caregiving related. very sad.
 
Barbie I can relate to what you are experiencing. Becca is involved with her hospice care but every conversation seems to be care related. I miss having engaging conversation. She is planning her end of life issues and she said that when she is done she may be depressed without anything to do. As of now she sleeps and watches movies. She has given up on her dynavox. We are upping methadone doses to enable her to get out because this summer may be her last chance to get out . She won't leave the house during Minnesota winters. At least she has friends who care and visit and I also get respite. I have been her 24 hr. caretaker for a year and a half.
 
Thanks Barbie,
Although I don't work our routines do sound similar. I was feeling a little guilty about not taking him out anymore but I think it would be too much for him now. I do miss having a normal conversation, when he does try to communicate it is also all care related. Today we have had a problem with the van and I had to get it towed, tried to tell him about it but he just wasn't interested.
 
My routine for many months with Chris was that I would rise at 5.30am, have a cup of tea in bed and be with my family here for a bit while waking up.
I would get Chris up a little before 7 and his personal care would be finished by around 10am.

All up his care took around 8 hours a day.

I had help coming in a couple of hours at a time mostly, and one day of respite for 6 hours. Until the last 2 months (after I broke a toe) he would not allow them to do any real personal care for him, so mostly they did the washing, prepared meals, peg feeds, light house work, massage.

I was also trying to work my own business and look after a 14 acre property.

As with others, conversation stopped a long time before that, and communication was mostly centred on his needs. Visitors would chatter a bit to him but he had zero interest in anything about the property once he couldn't do things here and wanted me to spend all my time caring for him so there wasn't much else to talk about.

He wanted to go out, but most of the last times we tried in his last 6 months he ended up having a miserable time for one reason or another (due to this disabilities) and as his ability to stand decreased he lost all interest. He very much withdrew early in the disease and I found that heartbreaking.
 
Hi Amanda. My day starts at 5.30am. I get up, grab some coffee and greet my dogs. I make lunches for our girls and take them to school at 7am. I get home and have breakfast and try and get 45 minutes of work in at my desk. At 8.30 I wake my husband and get him up and showered. He has a protein smoothie for breakfast by mouth (he does not want a peg or vent). We are normally finished with this routine at 10ish at which time I go back to my desk and work. My desk is in the lounge where he sits which is nice because he watches his sport while I work. I chat away to him throughout the day and give him kisses and cuddles (whether he likes it or not :) For lunch he has an Ensure shake. In the late afternoon, early evening I lift the kids. We all eat together in my husband's lounge. I feed him his supper while the girls eat. It is a struggle everyday to try to maintain some sort of family life. Teenagers just want to do their own thing, but they are very patient about it all. My husband does not go out except to church once a week as it is extremely uncomfortable for him to sit in his wheelchair and wear the neckbrace. During the day he sits in his recliner all the time and refuses even to sit in the garden. His life is spent in his lounge and the bedroom. It was very difficult for me to accept as we have always been outdoor people, but I have accepted it now. My acceptance seems to have made him more relaxed and he appears content where he is. I still talk to him about anything and everything. Sometimes he responds, most of the time he isn't really interested. But I still get him to smile every day!
 
Oh dear. My post went to moderation. Can't think of what I said wrong? Hopefully you'll see it soon :)
 
>But I still get him to smile every day!

:)
 
All of us PALS and CALS alike need to find something to smile about every day...it's good for the soul!
 
All of us PALS and CALS alike need to find something to smile about every day...it's good for the soul!

Here lately, I have been watching "fail" video clips on YouTube...
 
You CALS are amazing. I cant stand this disease and do not want to put anyone else through this.
 
It is really amazing how much time caregiving takes. when you care for yourself--nothing is a big deal. when you care for a child, no biggie. but caring for an invalid is so often complicated and time consuming and just plain hard in every way..

breaks my heart. I am just so tired of it all.
 
It is really amazing how much time caregiving takes. when you care for yourself--nothing is a big deal. when you care for a child, no biggie. but caring for an invalid is so often complicated and time consuming and just plain hard in every way..

breaks my heart. I am just so tired of it all.

I said the same thing the other day. A child can come and go as they please and can be taught to do things and things get easier as time passes. The exact oppsite is true for ALS patients.
 
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