CALS Roll Call Continued

[rmt]

Wishmobbing, I love your shower stories! And I love your idea about staying in bed the whole night sometimes. I'm definitely hoping we can do that!

My husband loves getting pictures when I do things without him so I'm going to absolutely send him tons of pictures! He is pretty good at using emojis to respond so that also helps me feel connected to him when I'm away.

 

[vltsra]

We're still here...I was locked out of the forum for a while due to email issues.

My PALS has been talking a lot about the end of late. I know he is miserable (as am I) but I can't think about him going yet. I think we need to get hospice involved at this point to help us both with support. I have an appointment with the palliative care physician next month so will discuss the tube feeding coverage with him then.

I try to keep him engaged and amused to the extent possible. I set up four bird feeders outside the window for him. He can still get outside although driving the power chair is becoming more difficult. One day at a time.

V

 

[rmt]

Oh V, I'm so sorry things are so hard. You are doing such an amazing job for your PALS. Getting hospice involved is a great idea.

 

[Mary2]

V you have gone the distance taking care of your PALS. And it hasn't been a sprint. It has been a marathon. It is a situation where you do 12 tasks and PALS asks for two more tasks and no matter how small the task it is still a task. Quality of life is measured in 20 minute intervals...and audio book (James Patterson and Dolly Parton have written a book we are listening to) or watching a drama series on tv. Meanwhile I know I am on the cusp of widowhood and I ponder what that will be like.

 

[hbgracie]

Hello everyone! I'm sorry if this isn't the right place for this, this is my first time posting!

My mom has had trouble using the cough assist and ResMed Astral Ventilator machine. The first time she used the cough assist she felt like she couldn't breathe and it made her feel weak and drained. The ventilator she tried a few times with the RT adjusting it within the "parameters" the clinic gave him but she tries and tries and it just seems to be exhausting her more than anything else. She can't get on rhythm with it's breathing and when she's done using it she barely has any voice left for a few hours. I know people say these machines are wonderful so I would really love to get it working for her. Does anyone have any advice/similar experience?

Thank you all so much.

 

[lgelb]

Hi, H, this is the right place, and welcome. I will PM you about updating your mom's settings. You don't have to be limited to anyone's "parameters" to improve her comfort with it. The Cough Assist is not right for everyone, but those settings can be adjusted as well, to see if it might work better for her.

Best,
Laurie

 

[hbgracie]

Thank you very much for the welcome and for your help. It's very nice to hear something encouraging for her. I sent you an email!

 

[vltsra]

Another week gone by... today my PALS told me he was stuck outside for a few minutes unable to move the power chair with his ever weakening hand/arm. We live on a quiet cul de sac so at least there was no traffic. The caregiver was inside getting his lunch.

As for me I was down the road at a paint out event. It was a group of us painting outdoors. My PALS has always encouraged me to do these things so I went. A couple of the painters were fairly renowned artists. It was great just to get out there.

I asked my PALS if he wanted to try the head controller for the chair again but he told me his head is so weak now he doesn't think it would work. He asked for morphine again and has been sleeping more of late. I don't know how to think about this...just keep trying to give him a decent life given the circumstances.

V

 

[rmt]

V, I'm glad you went to your painting event. You need to have some time for yourself.

My husband is also declining both mentally and physically. It is so hard to watch. My heart breaks a little more each day.

 

[Mary2]

Well we made it to Wed. We have had some ups and downs but basically PALS is breathing okay and we are packed to depart for the wedding at 2 pm today. I am very tired but hope to rest a couple of hours this morning.

 

[vltsra]

Dear Mary so glad to hear you are ready to go! I will be thinking about you and wish you all the best at the wedding.

V

 

[rmt]

Mary, I'll be thinking of you this weekend and sending positive vibes your way! Hope everything goes smoothly and that you both can enjoy the wedding!

 

[Jrzygrl]

Good Luck with everything Mary! I hope it's a wonderful day for both of you! (And of course the bride and groom!) ❤

 

[lgelb]

Best wishes for a memorable day.

 

[affected]

Pulling for you Mary, enjoy every moment you can!