CALS Roll Call Continued

[vltsra]

Great to see your post Robin, congrats on the anniversary for your dog!

My PALS has seen a lot of progression which is why I have been unhappy that his sister has not tried to see him. She finally came over on Saturday after 14 months. She said she was just protecting herself from COVID. I'm sure his progression was a shock.

His friends came on Sunday and I tried to give him a little bite of cake with some ice cream. He wound up aspirating it and I had the cough assist and suction machines out. His friends seemed a bit rattled after that. They have no idea.

We are using the cough assist more often these days. My caregiver says she thinks he is still doing well but I can see he is weaker. It's sad for both of us.

V

 

[rmt]

V, we are planning a trip to see my husband's family and I'm dreading their reaction to how much he has changed in a year. You are right, people have no idea.

 

[Ken15]

And I'm trying not to worry about what things will look at in another year. It is so hard to prepare for possible changes, but not let the worry about those changes ruin the present.

CALS tread a fine line between past, present and future. It's terribly hard to do, but we can't dwell on the past - ALS doesn't allow for it - it will eat you up. The future is scary as heck, but this forum and a good support network can help tremendously.

The present is where the majority of our energy should be devoted, if at all possible. It's where memories are made and hopefully, the good memories will outweigh the bad . . . like when grandchildren want to sit with your PALS and it makes them smile.

Ken

 

[affected]

Wow great one year, I bet that pup is a big part of you both now.
It is lovely to see this thread in use again - it's good to just stop in at the least.
V so sorry that things were dampened by the aspiration, but what a reality check for those there. It can be hard to push past these things and remain in a place of enjoying the moment, when you are constantly being vigilant for everything. Still we find the best way we can.
Ken - spot on!

 

[vltsra]

Checking in...it's Wednesday, very cold and gloomy here today.

I've been having a hard time this week with all the losses. My PALS has lost so much and can't do much that he enjoys. He is now losing the ability to speak. He has always been so sociable. Eating can't be far behind. He was just watching a youtube video about Borrego Springs, where we went 2 years ago for a weekend getaway. He played pickleball for the last time there. It's so hard emotionally to see him suffering. I try to think of ways to keep him engaged but lately I feel so exhausted. Seems like all his pleasures are gone.

V

 

[affected]

Glad you posted V - it is hard isn't it when so much seems glib in the face of these losses. It's like a long slow grieving process without being able to let any of it go.

 

[rmt]

V, I know what you mean. It is so hard to watch the person you love suffer. I find myself exhausted emotionally a lot of the time these days too.

This week was pretty good. The weather has been great and I've been trying to spend time as much time as possible outside before it goes back to being cold and rainy this weekend (though we really need the rain that is on the way). My husband has been in a good mood most of the time and seems to be more engaged in things. We are planning a quick overnight in our camper van this weekend which we are excited about. Right now, his biggest issue is his swallowing and I'm constantly worried about him getting enough calories in. His weight is stable, and he is adamant he doesn't want a PEG (at least at this point), but it is a struggle for him to eat enough every day. I'm trying to be supportive of his wishes and not nag him all the time about eating, but it is hard to watch him struggle.

 

[vltsra]

Glad you had a good week Robin. I cherish those good days.

My two cents on the PEG, which is timely after another aspiration episode this evening. We were trying to feed him dinners in the evening by mouth. This has involved thick pureed food. All other meals have been thru the PEG. I think we are going to pretty much do all meals thru the PEG now. He got his PEG 9 months ago and I'm very glad we did. It is upsetting to watch him struggle with eating. He is keeping his weight stable and even enjoys a beer thru the tube on occasion.

 

[rmt]

V, I desperately want my husband to get a PEG. We've talked about how I wish he would get one and how stressed I am about his ability to eat safely and to eat enough. But he still isn't interested at this point. So I'm trying to let it go and I'm doing everything I can to not let it ruin every day for me. But it is so hard! It seems like such an obvious thing for him to get and that it would drastically improve his quality of life (and mine!). I think that is what is making this even worse for me, that it seems so silly to not get the PEG now. He could still eat what he wants and just use the PEG as necessary. Oh well, I guess this is just another thing that I have to accept is out of my control.

 

[affected]

RMT that is a really hard one isn't it? Advocating for what our PALS wants, not what we want. Remembering that it is their body, and with so few choices, any they make need to be owned by them.
That was the biggest thing for me in staying in a place of acceptance - disagreeing with choices Chris made, while strongly advocating for his right to have those choices upheld, respected and followed.
At the end of the day we don't know that anything will give the result we expect on anything in life, let alone with ALS.
I've supported a CALS who listened to the advice to have the peg placed fairly early and her PALS suffered refeeding syndrome and never came out of hospital from the PEG placement, in fact never truly became fully cognisant of the world again. The guilt she had to work through for pushing for the procedure was awful. It wasn't her fault of course, the syndrome as a complication is so rare we don't usually even get warned it can happen. But you can imagine she still had to work through it.
So we know what we would choose, and what generally would be a result, but this monster does what it wants anyway.
I hope you can find that place of acceptance each day, it is our biggest challenge for our own selves.

 

[vltsra]

Here again for a check in on the roll call. The weather has improved greatly which is so good for my PALS. He loves being outside and I can see a change in his attitude. His friend and I are planning to take him on an outing today.

Yesterday we saw a female oriole outside, so I put an orange dish with grape jelly for her. I didn't see it but my PALS said she came down and ate the jelly! I put it out again today and she came again this morning. We have two hummingbird feeders that are very popular these days. It gives him a lot of joy to watch the birds.

I was able to get out yesterday in the lovely weather for a ride with my friend who was also a CALS. She took care of her ex-fiance when he was diagnosed. Not many people would do that! While her journey was much shorter than mine, and she was part of a team of friends, she still makes me feel like I am doing my best and like I am not crazy or terrible when I have meltdowns.

Hoping for a good outing with my PALS. I am looking forward to the smile on his face.

V

 

[affected]

V how wonderful that you got some time away with someone who gets it

 

[rmt]

V, isn't it nice to get outside! Both our moods are so much better with the nicer weather. My husband loves watching the birds and squirrels in the yard too.

We took our camper van to the coast for a night. It went way more smoothly than I expected. I'm always really worried about my husband getting enough to eat and drink and I wasn't sure if he would be able to do that in the van, but he did great! He built a little platform for our dog between the front seats so he can see out while we are driving and it worked perfectly and made the dog so much happier during the drive! Our next adventure will be a 5 day trip to visit family in Reno in a couple weeks. Fingers crossed that trip goes as smoothly!

 

[vltsra]

Robin how wonderful you were able to get your husband out to the coast. We traveled as much as possible while we were still able. It meant a lot to both of us. Good luck on your trip to Reno - I'm sure you'll do fine.

V

 

[Mary2]

My husband was diagnosed 2 weeks ago but has had neurological symptoms for several years. I am not surprised by the diagnosis but feel very tired. Our home has nice windows and my husband enjoys looking out the windows. We have a bird feeder attached to the window and we enjoy watching the birds!