Acceptance

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KarstBoy

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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?
 

lgelb

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Many PALS, including my husband, never reach(ed) peace. I think acceptance of a disease that paralyzes and then kills you is outside the usual "stages of grief" framework, honestly.

But since her depression is pretty much all-consuming....PALS in that situation have often found relief with an antidepressant and/or counseling. I would also try to bring the outside world in as much as possible -- obviously not socializing indoors in physical form with Covid rampant, but through YouTube, Facetime, etc. to make those connections with things she has not seen/done as yet -- the idea that people, places, and things still have much to offer even with ALS, and so does she.

And so do you. Don't feel guilty for being angry. It is not going to go away one day. It is a natural response to what is happening.

I can imagine the construction is stressful, so since you are in a fairly warm part of the world, any way to take a turn around the block, find a park with trails, etc. when things get loud?

Best,
Laurie
 
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Mary2

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Hi Karstboy, My PALS and I take antidepressants and xanax to sleep. These medications have been helpful for us. I can relate to the construction work. We laid a hard floor down and this took a week and I was so stressed by having the men in the house by the end of the week. I emphasize with how you must feel and struggle when your PALS doesn't want to eat or have anything to do with the GTube. Does she zoom with girlfriends or family at all? Does she have a counselor? I am thinking about you and your family.
 

Mary2

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emphasize....should be have empathy.
 

vltsra

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Hey Karstboy, we are 6 years in and my PALS sometimes still tells people he just needs to get well. He tells me he is still praying that God will cure him. That said, denial is a self protective state and pretty understandable.

I can understand her crying all the time...I did that for the first 6 months as a CALS. I'm sure she is depressed, angry, and frightened. As others have said, an antidepressant is helpful for both PALS and CALS. Also I find that because ALS can be fairly long term, we both cycle through those various grief stages.

We went through 6 months of construction to retrofit the bathroom and install an elevator. It was terribly stressful. I still feel like the house is a mess but have given up. Eventually your project will be done and there won't be any more noise.

Ditto the anger thing, I did that last night and in turn feel so guilty and horrible. I suppose we all have done that from time to time. I'm pretty worn out now but trying to hang in there. The forum helps

V
 

Gail Brewer

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OMG I am so glad to meet you all. I have ALS and it sucks. Most sites only allow cheerful Christian sentiments. Well this is not a cheerful heaven sent disease. It is hard. K, I cannot give you advice b/c I do not have enough information about your Pal. We all have unique personalities. ALS does make us all the same!. Each of us have our own reactions which are unique. Keep in mind that this is a neurological disease which causes brain damage. Your Pal requires some caring physician to provide medication to reduce suffering.
Period.
 

Jimi

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7yrs since DX. 9yrs since symptoms - drop foot. I'm paralyzed from shoulders down. Can still move my head somewhat. I have a trach and feeding tube. I don't consider ALS a death sentence. It's a mental battle. I spend 23 hours a day in my recliner most of the time. Things that help me: (excuse my rambling)
-Keeping my brain busy. Controlling thru head tracking multiple computers, phone, stereo, TV, lights, heat, fans and most importantly my recliner
-Pay bills and budget just like I always did before
-Keep track of my eighth grade daughter's school work
-No mind altering drugs. I want to be present. I did use ativan for six weeks until I got used to the trach. I'm drug free now
-Have good wireless earbuds to enjoy music and movies and block out the vent noise
-Read about how to adjust all the respiratory equipment. Taking control of my care is empowering and ensures my comfort
-Read about upcoming tech to help my ALS life
-Stop expecting things to be the same. Embrace my life as it is. I'm here and it's not that bad.
-Hold out hope for what is to come. What kind of brain to machine interfaces are just around the corner? A cure? Will alien life be discovered? Who knows! This is a great time to be alive!
-Learn patience
-Treasure that I am still here watching my daughter grow up and have a loving wife I adore.

I know plenty of people who died a more painful and or sudden death than ALS. My brother included. I'm not going to disappoint them all by moaning about my life. It might suck, but at least I was given a chance to adapt and make something of the extra time
 
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Jlynn

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Jimi….your awesome and inspiring.
 
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