CALS Roll Call Continued

[MJT]

Tomswife, I love the image of the kids running around while you attempt to rearrange the furniture. I'm glad you and Tom went to the musical. Yay, musicals! We don't have basements in the south so we are doomed to theft. : (

My oldest daughter came today, and I went out for a few hours. I got a manicure because I felt like I needed to treat myself. I don't need a treat but feel pressured to do so by well-meaning people. Then I have to stop and think, "do I feel any better now?" I don't know! I didn't feel that bad to begin with, but since I don't have tons of free time, I thought I should frontload my treats. It's becoming stressful, self-care. I also got the Christmas tree up, which my husband has enjoyed.

Tillie, I saw the sip and puff mentioned on another post and mean to ask about it at our December 20 appointment. But, unfortunately, my husband needs the Trilogy far more than he uses it. He tries to use it all night and during his afternoon nap, but if it bothers him, he doesn't.

Laurie, I'm not sure of the exact mask type, but he has one with a foam cushion around the edge. Thank you for the info; I'll look at the mask options and get the less irritating tape.

Thank you all!

 

[MJT]

Laurie, PALS mask is an AirTouch 520.

Dawno, ThatsAmore, and Mana- what's new with you?

 

[ThatsAmore]

Well…. today has been mostly peaceful, but this last week has been a roller-coaster in the behavior department for my PALS. It’s been a lot to process. Logical thinking just does not happen. Cognition is not the same. Thankfully, a few family / friends in my circle reached out at just the right time - ones that I can be honest with. Talking to them helped with my high anxiety about a couple situations that came up. So… I just take this an hour at at time some days. Today we did get out for a sunny walk so we’ll celebrate that.

 

[affected]

He may be able to use the sip and puff at times, so check it all out with other masks. Poor nose.

I love the image of hiding things in a basement (we don't generally even have them here so they are always oddly romantic to me like something out of a movie).

 

[lgelb]

For another full face mask option, I'd look at the Quattro, for one. A lot of nose bridge pressure is about where the headgear fits into the mask and goes on the head.

Depending on why he was put into a full face mask, a nasal mask might also work.

Sip 'n' puff is just buying a 15mm standard or angled mouthpiece that fits into the hose, instead of a mask. They're cheap, so you can try one of each. If it works out, you can insert stiffer pieces into the hose to help mount it however works best.

 

[MJT]

ThatsAmore- I'm glad that you have the support of trusted friends and family and that you were able to get a bit of sunshine. It is helpful when someone shares that they are anxious, so thank you for your honesty.

Affected and Laurie- thank you very much for the detailed information.

 

[Bestfriends14]

This is going to sound awful, but I can't stand being a caregiver anymore. I hate it so much that sometimes I just want to walk away. Am I horrible, or are there other long-term caregivers who periodically feel this way? I love my husband and can't stand what this disease is doing to him. I wish I could bury my head in the sand, but that's not reality.

 

[Mary2]

I feel that way especially in the evening. I just want to put on a comfortable pair of pj's and read a book and lounge around in bed. I do watch over a face book site where people have been caregivers for decades...sometimes the entire marriage. And some of the people they are caring for aren't very nice or cooperative any more. At least my husband is nice. But I will be happy not to ever see a hoyer lyft again!

 

[Bestfriends14]

@Mary2 which fb site is that? I'd like to see others experiences so I can stop whinging and feeling sad for myself.

 

[Mary2]

Spousal Care Community - The Caregiver Space

 

[Tomswife]

I feel like the hunter gatherer lost in a fog. I am still in the DME acquisition stage. I just put together and tested the slider bench for bathing yesterday. We are in the process of getting the PWC. In the process of getting Relyvrio - that has been a long stressful process figuring out why it was on hold, then ready to ship (for $16880.07). I am following up to get the prior auth so we pay a more reasonable copay. R was not processed correctly thru all insurance. But all I do is think, call, follow up, order things, and care for Tom. Nothing seems easy, or is easy.
I feel like a "stranger in a strange land".

 

[Tomswife]

Sorry typo. CVS Specialty wanted 1680.07. I love the seven cents!

 

[affected]

Bestfriends I'm contacting you privately about getting private caregiver only support. You are not alone and your feelings are valid

 

[Tomswife]

Bestfriends I am so sorry. You have done so very much for your PALS. Thinking of you. I hope you will find support and comfort. You must be utterly exhausted. Sending virtual hugs.

 

[MJT]

Tomswife-"But all I do is think, call, follow up, order things, and care for Tom." You nailed it. And doing so while watching him suffer an incomprehensible horror. That's the icing.
Bestfriends- You are not whining; you are being authentic. I can't imagine doing this for 5+ years.

I feel like I have to put out forest fires; someone gave me a bucket but forgot the water.