How to deal with denial

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affected

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Jenny I'm so glad that my experience can help a little, it makes me feel like there was some kind of purpose in what I went through.

It is very hard, but somewhere, somehow, coming to a place of accepting that this is out of your control, and will take him, may help just a little as you face those losses every day. I felt like I was constantly screaming inside my head, but with antidepressants, counselling and peer support that did stop, and I muddled my way through.

Now I walk along beside others muddling along. We got you.
 

andrewf

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I'm not saying this is happening, but there is a dementia that is often associate with ALS, particularly commonly with bulbar onset.

If you go my profile and the about section there is a link to some information I have written about this that may help you to look at. Many with this dementia refuse being tested for it as they don't believe they have changed at all, and it can be traumatic to insist on this.

It can just help a little to understand some of the kinds of changes that can happen - most commonly if the PALS has this pairing of diseases, the FTD symptoms actually start before the ALS, even if only mildly.

Breathing issues can also cause behaviour changes.

Whatever is happening, you have support now.

Indeed. Do you have Guamanian heritage?
 

affected

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@andrewf I am guessing you mean did my PALS have Guamanian heritage? No definitely not, we are both white european descent mix in Australia
 

Jenny B

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Thank you so much, Al...you are wonderful 💖
 

Firefighter58

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Good morning Jenny, has your husband tried buttermilk milk yet? He may not like it but he may. I find a little salt with it is desirable. It is a bit thick and I find it easy to drink and I enjoy it.
Al
 

Jenny B

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Hey Al! Thanks for checking in. I tried to get him to try it after you suggested it. He's been super picky lately though and didn't want to. He doesn't seem to have much of an appetite. I had been nagging him and trying so hard to get him to get calories in... but finally asked him if I was bothering him with all of that and he said yes. So I've just backed off and just offer things here and there. He usually turns me down, but I feel good at least offering and feel that respecting his wishes is the right thing. I'm not sure what's going to happen next, but just trying to enjoy our days together as much as possible. He still likes to watch TV shows together and take walks. I've noticed he is more wobbley on his feet lately and has slowed down a lot in the last week. Our walks have gotten shorter and shorter. He won't talk about what he's feeling, but I hope this doesn't mean that the function of his legs is being affected yet. It's hard to know if it's an issue of not having energy from lack of nutrition, or the disease progressing.
 

Mary2

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Hi Jenny, One of the challenges I found with ALS is having the right equipment at the right time for the next stage of the disease.
My PALS progressed through a cane, walker, scooter, and two wheelchairs. We also had a lyft to go up and down the stairs for awhile....both to the second floor of the house and then also into the garage. Now we have an electric hospital bed downstairs and a ramp in the garage. ALS is all about equipment.
 

Jenny B

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@Mary2 - thank you so much! Great suggestion. He sees his neurologist next week, so I'll be sure we talk about how we can go about getting the right equipment for him ahead of time.

Thanks again!
 

MJT

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I would find a certified ALS specialist not a neurologist. We see Dr. Bedlack at Duke ALS. Appointments are 6 mos out but I was persistent and got my husband in quickly by calling Monday mornings to ask about cancellations. Had you both discussed a healthcare directive? My husband does not want a feeding tube or help breathing. I hope you know his wishes. I can’t imagine the agony of not knowing and trying to navigate your situation. Sending love.
 

Firefighter58

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Hi Jenny, I agree with Mary2, I also have all the equipment including a feed tube and combined they make life so much easier and better. Your husband has to reliese that he has als and all that equipment is made to assist him in living his life and makes life so much easier for you to. I know that your husband is against the idea of assistance but possibly a proscription from his neurologist to relax him would help, it certainly worked for me. All this stress is going to you to burn out quickly.
Al
 

Zephyr

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Jenny, I am so sorry. This is so similar to my journey with my Husband.

Mine held out until his 2nd year in to get a peg tube, which just happened this week. He wouldn't even go to a neurologist until the speech was 90% gone, and he was getting drop foot and muscle twitching.

And choking through every meal and having laryngospasms. I think he finally realized how terrifying meals were for me to witness, and decided on getting the tube.


I hate the feeling of helplessness, the dread, the sadness. Each new day you have them is a blessing, but each new day is one step closer.

My husband has also withdrawn somewhat. He knows he isn't part of my future at some point. That has to be extremely depressing.

I know it is for me. We just muddle through, and try to enjoy each day.

Everyone here is amazing. I come here when I am sad and empty. We are here for you. 💜
 

andrewf

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So, Sunday I spent about 3 hours with an assistant getting my parent-in-laws garage ready for the ramp to be installed. I think the place has never looked better generally. They have one of these two-car garages with 2 doors that can technically fit cars but is only 20 feet wide total. There's no "elbow room" for really anything else. Anyway with 'gampa's' car gone now theres room to move things and for a ramp. A staircar is coming in a few weeks but they are backordered, to get to second floor up the stairs. My mother in law initially was like "why do we need a ramp?" and she just didnt seem to process that at some future point he will not be walking and will still need to leave the house and be able to do things. He already basically isnt doing stairs anymore, and the garage has these 2 steps to get from the house to the garage. He walks with a walker pretty good at least. But I'm always looking at "what is the next mod" he could need so they could comfortably stay in their home.
I keep reminding myself, and my wife, that as unfortunate as this is.... think of an alternative, like he had a sudden stroke and was left incoherent and brain damaged. Or that he had dementia etc. So we're grateful for that. Hey since the situation is what it is, we have to get our minds around it somehow!
He is staying with us until the staircar comes, nice ADA bathroom on our first floor I had the presence of mind to put in 13 years ago when I did a reno. big room, lots of floor for walking. And most mentally, family around. 3 granddaughters it is never dull I will say that!
 
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