CALS Roll Call Continued

[Mary2]

MJT my PALS is in his later 70s. He is still very interested in many subjects...the news, space, history and so forth. He is listening to an audio book on Carthage which interests him. I am younger. We have been together 31 years.

Tomorrow I am suppose to go out with a friend and "relax"...go to a museum or antique mall. But here it is 1:46 am in the morning and I am wide awake. PALS is having trouble with his secretions and is wide awake when I checked on him. I am afraid to take my sleeping medication because I am afraid I won't hear him call. Such is the life of an ALS caregiver!

 

[MJT]

Mary2- that you put "relax" in quotes made me laugh. As if, right?! I hope you are looking at a painting and having fun.

ThatsAmore- it just occurred to me that not only are you losing your husband's personality, but he might not be able to answer questions. Just awful. Are you able to get out at all? Do you have help?

I hope all the CALS out there have a peaceful day.

 

[ThatsAmore]

Oh Mary2, I can relate on the sleep challenge. I had a request to help my PALS with the cough assist at 3am. I hope you are rested enough to get out and enjoy your time away.

MJT, I definitely worry about how communication is trending. He has a speech device loaned from ALSA but he won‘t really use it. He will text some… mostly its attempting to speak and pointing and we guess until we figure it out. I have some picture board type things to try as well - but we haven’t needed them quite yet.

We have college age sons at home who are very helpful and we’ve been making it work. I do get out enough for now and we have a great network of friends.

Wishing you peaceful days as well.

 

[MJT]

ThatsAmore, I'm glad you have a strong network. We do too, and I can't imagine how people cope without it. My PALS was banking his voice but stopped. He has limb-onset, so it hasn't been an issue yet, but he can't text anymore.

 

[Mary2]

Just touching base! I have a care worker coming this evening and then won't have anyone until Monday. My son and his wife are coming tomorrow evening. My son is pretty hands on but he does live 2 hours a way so doesn't do much with the hoyer lyft too often. The house is ready for them and I have lots of food. Just not sure I have the energy to cook and do PALS care. I think my daughter in law will help. She seems to enjoy cooking. I bought a pumpkin pie at PALS request and he should be able to eat this. Happy Holidays to those that are celebrating the holiday!

 

[Tomswife]

Today on Thanksgiving, I am very grateful for all of the years Tom and I have had together. We were married in 1976 and have had good health until Tom's diagnosis this year. Many good memories and blessings.

 

[affected]

@Tomswife How are you and Tom doing after the peg placement?

 

[Tomswife]

We are fine. He has no pain. Minor discomfort. VNA coming tomorrow to flush.
Happy Thanksgiving!

 

[affected]

I don't understand why you are not flushing the tube at least twice daily? Also cleaning the stoma and turning the tube?

 

[Mary2]

Well the caregiver has been having trouble getting his car started on cold mornings. This has been going on over 2 weeks. Last week I gave him a break and so I have been doing a lot of PALS care. This morning I told him to come Monday rather than come late today. My patience with this is wearing down I must admit. Yet we are lucky to have him. We understand he is the only one at this agency who is fully vaccinated. He has been with us 13 months. It isn't easy having people in the house.
I believe one care giver I had in the evening may have taken my 2 wedding bands and a pedometer. She really needed money. I went out one evening with a friend....just one evening ...and I think she went through my bedside stand draw. I miss my privacy!.

 

[affected]

Oh Mary - I'm so sorry your privacy has been invaded on top of all this disease does.
You must be a little concerned as your cold weather is only just starting. I don't suppose starting a little later in the day would help much with the car as you probably live somewhere that snows? Sorry, from here I just can't imagine as I've never seen snow.
I hope you can find a way to work things out with this carer.

 

[MJT]

Hello everyone!
Mary, it amazes me that home healthcare agencies don't require caregivers to be vaccinated. And I would be VERY upset about the loss of wedding bands. Tomswife, I hope your husband continues to heal with little pain. Tillie, you may not have ever seen snow, but HELLO! Australia! I'd love to go one day.

We are hanging in there. Every day someone does something kind or generous for us. We are fortunate.

Does anyone have any advice on how to help my husband with nose pain from the trilogy mask? It's almost like a bruise. The RT replaced his mask with one that has foam, but it's not making much difference. I put a bandaid on his nose to no avail.

Thanks, Martha

 

[affected]

MJT can he use a sip and puff at all some of the time? That would give his nose a break (no pun intended as we do not want a skin break!) How many hours is he using it a day?

Australia is pretty amazing, but I've never been overseas to truly compare it, so you will have to take my word for it

I love that you have people giving you both kindness, what a difference it makes!

 

[lgelb]

Martha, you don't want a bandaid on the bridge that has adhesive and does further damage coming on and off Try "gentle paper tape" or Transpore tape. He may need a different mask. cpap.com offers many on free trial or returns for a nominal fee. What mask is he using now?

 

[Tomswife]

Mary so sorry. I have been thinking of you.

I was a able to get Tom out last night. One of his favorite Christmas plays is the musical Scrooge. I hired a driver to drive our car because my eyes are not good at night. We enjoyed the show and Tom was comfortable in his wheelchair.
Our daughter offered to come today with her 2 young children ti help me figure out rearranging furniture and organizing things now that Tom is on the main floor. I did not think we would get much done with the kiddies here... and we did not. But it was a nice visit.

P S I keep valuables in the basement. Our police department says no one has ever had theft from basement.