My PALS and denial

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affected

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The possible option of renting your home out while you rent another suitable place could make a lot of sense and be a faster alternative with the option for you to sell or not at your own pace later.
 

JimInVA

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My PALS, Darcey, knew when her legs were becoming problematic when using them began to scare her. It is a very delicate point between being able to hold weight and that point where the leg collapses and sends you falling. And falls must be avoided at all costs.

We have a stair chair that gets us between the 1st and 2nd floors. Darcey has used this chair well beyond her ability to purposely sit up. She has had NO core strength for quite some time, yet is able to continue to utilize the stair chair to move between floors. Obviously, I'm with her and control all movement (she has no use of any legs, arms or hands). I've asked her multiple times if she'd like me to get a chest strap, in addition to the waist belt she already uses... but she keeps saying that it is not necessary. She says that once she is in the chair, correctly, she feels comfortable. By "correctly", she means that she is seated back in the chair (but not too far that it begins to push her forward) and with her arms wedged between her body and the padded arms. Anyway... this works for Darcey. I wouldn't assume to suggest that it would work for all others.

My best...

Jim
 

Nikki J

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Re stair lift. I suspect height of PALS factors in. My sister used a stair lift with no core strength but she was very petite so her slump forward was not like that of a tall person. I don’t know it was comfortable but it was quick and by the time the core went the whole transfer to lift, ride, transfer to chair, immediately go into tilt was much practiced. She was also small enough to be easily moved by her CALS
 

jfaidley

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Hi, Vitsra.

I have not been on this forum since 2018 -- can't imagine what happened since we continue to deal with this awful disease. Slow progression does not seem like much of a gift -- more like pulling the wings of a fly. I also faced his desperate search for a cure or a "way out" -- stem cells, IV antibiotics for 8 months in case it was Lymes, IVIg for three years despite relentless decline, supplements and more supplements...) Some of the options seemed reasonable, others crazy, almost all quite expensive! No lack of snake oil salesmen to exploit the desperate.

Of course any objections like "How do you know that's safe?" or "But we don't have enough to pay the rent" are signs of pessimism and disloyalty. And I have to say anyone who lives this path as a caregiver must be forgiven for thinking, "Wait? Do we actually WANT this to go on LONGER?" Yes, there are inspiring stories of people who transcend this illness and feel satisfied and fulfilled despite the limitations -- truly extraordinary. But my experience has been one of rage, "I hate my life," refusing small comforts offered (has not been out of our tiny NYC walkup for years despite a crew of people willing to carry him downstairs to sit in the sun for a bit), friends and family rebuffed ("Why would I want to see those photos? I can't ski anymore!" or "Who cares you lost your job? At least you don't have ALS!").

I don't mean to sound cavalier -- I appreciate, of course, that his rage and demands and lack of empathy for others are not entirely his "fault" -- partly the disease itself they say, combined with the very human fear of dying and profound, progressive loss of control. Awful. But it is a grueling challenge to be in the line of fire, as caregivers are.

Regarding the advance directives, I worried about this for a very long time, but eventually told him clearly what I would do as long as he did not have one. So, "If you do not have a DNR, and go into cardiac or respiratory arrest, the only appropriate choice is for me to call 911. They will do CPR, defibrillate, intubate -- whatever the situation demands. If this is NOT what you want, you should make that clear in legal document -- I will not accept the responsibility of allowing your life to end when your choices so far have been to try to prolong it." I followed up by communicating this with his (supportive) family.

Things like the g-tube didn't feel as urgent because they don't require split-second decisions. He eventually chose the PEG during yet another hospitalization for aspiration pneumonia, and it seemed appropriate to me since he still had some function and feeding him had become unbearably worrisome as he choked and spluttered with every bite.

One last tip that has helped me immensely -- I started to consciously seek things to be grateful for. I made it a physical project -- got a bowl from the cabinet, put in strips of blank paper and a few pens, and started writing down the good things that happened. Like when my caregiver brought me tulips for Mothers Day! Or my sullen, 18 year old daughter spoke comforting words to her dad. Sometimes I put in several strips a week, sometimes I forget for months! But it is full now, and the practice has made the little bright spots easier to notice. Helps keep perspective.
 

jfaidley

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Sorry -- and just a simple thing. We live in a walk up apartment in NYC, so in the days when he used to want to go out, he would just sit down on his butt and scootch down, one step at a time, with one of us spotting. Not elegant, but got the job done without risking a fall. Obviously not workable for going up and down a lot, but an option for an occasional trip. Eventually even this became impossible, but it was a thing we did for some months.
 

vltsra

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Dear J, I read your post and felt so sad. I don't know where we will end up mentally with my PALS. He may end up in the same state of anger. I've been through my own anger and think I have reach the "acceptance" stage, but who knows with a long caregiving stint.

I'm pretty fortunate that my PALS has a good spirit right now. He is a lovely person despite his failings and has kept a somewhat positive attitude, although he constantly tells me "this sucks" and more often, "I just need to get well." I wish that were possible. I'm willing to try whatever he wants to but often that means more work and more money spent.

The new caregiver started Monday and she is really great so far. She's a lovely Mexican woman which is great for my PALS as he is also Mexican and I jokingly said they can talk about me in Spanish now. My PALS told me some things about our previous caregiver that frankly make me upset, but I told him now I just want to move on. Our new caregiver is older and seems to like to spend time with him. It's a sunny day and he likes to get outside which is why we installed the elevator, which was a major expense and hassle but really good to have now. It's a shame that he worked so hard at his business and now is spending his savings on this instead of enjoying life. I hope to get him out later.

J, I love your idea of the bowl! Sometimes in the dark of this disease it's hard to think of things to be thankful for.

V
 

affected

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That bowl is brilliant!
 
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