CALS Roll Call Continued

Oh, V, I wish I could visit you to give you a break. Some days the requests seem endless. My husband was always cold too. Long sleeves, flannel pants Sherpa lined slippers with heat packs in them, blankets. He was still cold. We were lucky to have a sunroom with a separate HVAC system. Some days I would crank it to 83 before he was OK. Would a portable space heater help?

Sending big hugs!💕
 
Darcey was also cold all of the time. And, of course, I was hot all of the time. The compromise was that I'd turn the temp up as high as I could stand it and then strip to my underwear. Darcey would be wrapped in blankets... cocooned, actually... and had an electric one that went across her shoulders and chest. And sometimes, she'd wear a beanie if her head was cold. When our caregivers would arrive, they'd crack open the front door and ask, "Hey Jim... do you have clothes on, yet?"

My best...

Jim
 
RMT..So glad you got away to the cabin! Is it near a lake or have a view of the woods? Vitsra I think you and your PALS are doing great for having done this for 6 years! I fear you are/ or are going to be sleep deprived. My PALS wears a diaper at night with barrier cream applied. I suppose we are taking a risk about skin but so far his skin is okay from this. PALS uses nasal type thing instead of a mask and has good respiratory support from this. PALS adjusted to the alternating air mattress....maybe it is the settings...do you think it was alternating too frequently and you could get away with less alternating. My PALS takes Lexapro and Xanax. I think the meds help. I can feel how hard you are trying and I feel your fatigue. San Diego Strong some would say!
 
So sorry I've been a bit absent a couple of days.
The constant feeling of being on alert and on call, I found really exhausting and never found a true solution.
V you are doing the right thing trying to keep him off that area, this is the warning sign and you are heeding it.
Do you massage around the area with creams each time you move his position? That really helps, but keep a close eye for any break in the skin.
The response to cold and heat is amazing as temperature control goes out the window. Jim I was laughing at your description and imagining workers arriving and doing that check at the door. We have find the mirth where we can for sure!
 
PALS just had a great few days with his niece from NH and my son and his girl friend! I am exhausted from the cleaning but had a great time as well. Maybe now the house will be easier to maintain since I decluttered so much!
 
how lovely to have family around Mary 🤗
 
Mary, so great to have family visit! And I bet it feels so good to have the house decluttered. I really need to work on decluttering too!

Nothing much going on this week for us, just normal mundane things like getting a tree trimming estimate and having the rat removal guys come back to check on things. We are having dinner with my parents tomorrow, which I'm looking forward to. My husband always comes to say hello and then goes home to spend the evening with the dog while the rest of us eat and chat for hours. Before his swallowing issues, he would stay for dinner and then leave (he has never enjoyed the extended chatting sessions, even with his own family), so it really isn't that different from before. I'm hoping he will stay at least for a few minutes to enjoy the people-watching from my parents' condo deck. It looks out over a walking/biking path and then out across the bay to downtown Seattle. He and my dad both really enjoy using the binoculars to check out all the boaters, kayakers, etc.. The weather tomorrow should be perfect for lots of action!

I used to feel guilty having a fun dinner while he is home with the dog. But we both agree that it is good for me to have a nice time and he is thrilled he isn't "required" to stay the whole time. Plus, it is one of the only times I get take out (or if I'm really lucky, a delicious Mom-cooked meal) these days. I really miss eating out (well, now takeout because of Covid). We used to eat out all the time, but the only time I do takeout now is when I'm with somebody else. I just can't bring myself to do it when it is just us since he can't eat it. It seems so cruel to get food from our favorite places when he can't enjoy it anymore. I guess the silver lining is we are saving money with me eating in and it is probably healthier too. I just wish I enjoyed cooking!
 
Hi RMT, So glad you enjoy dinners with your parents. And the condo sounds terrific! Yes, I am doing more cooking than I ever have. I am trying to prepare tasteful meals for PALS to eat before he has to stop eating! Our area is having a Covid surge...Less than 25% of people are vaccinated and the county next door has 10% vaccinated. So between the Covid and the ALS I am really confined. My PALS does not go out at all except to doctor's appointments. Yesterday the caretaker didn't show because the grandchildren are out of school doing virtual learning. Yesterday my son asked my PALS what Here Comes the Bride song he likes...so that is a happy thing. Still waiting on the proposal. Hope to get to the gym if the caretaker shows this morning!
 
I felt guilty about eating great food too. As my Chris had owned cafes and cooked absolutely everything from scratch, and I enjoy cooking, it was really hard for him to lose all that first.
Dinner with your parents just to relax as you is really something to enjoy without guilt, I love it!

Mary please stay safe, it's hard being isolated isn't it.
 
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Mary sounds like you had a great visit with your family. I miss my family so much but they are 2000 miles away.

Robin sounds like you had a lovely time with your parents at the condo. It's important to do these things for yourself while you can.

My PALS has not even wanted to go outside lately. He says his butt hurts in the chair. He complains about the bed too. I have checked but I don't think he is getting a bedsore. It could just be that he is just bones and skin now. I've tried various cushions and a sacrum pad and he still complains.

I've been just exhausted lately. All the things I promised myself I would do while caregiving (like getting an occasional massage and having lunch out with friends) are off limits due to Covid. Now the demands have gotten more difficult in any case. Our caregiver has been out here and there and I just find that I am worn out especially when she is off for a day or two. I think it's a combination of physical and emotional exhaustion. Just trying to hang in there as this is long term for me.

V
 
V, sometimes cushions and pads produce more shear stress (pressure in one area). I would consider a better mattress overlay (maybe perforated green latex if that's not what you have) that his whole body can sink into evenly. Does he have a ROHO cushion in the chair? Changing wheelchair tilt position and foot pedal height throughout the day such that his legs are stretched out at times like they are in bed, may also help.

Best,
Laurie
 
The ROHO are the best for sitting all day.
In bed I would just slightly tilt Chris to one side (he couldn't be fully on his side) and use pillows to prevent him rolling back onto his butt.
Often pain is the first warning sign before an actual bed sore begins to show so the more you can do to keep him off the painful area, massage cream into the area (around the actual spot) and changing position as often as you can manage will help.

However, your exhaustion concerns me too. The long haul is unbelievably exhausting physically and mentally and I hope you can find ways to let off some stress and gain just a little rest so that you can keep going. I truly know it is 1000 times easier said than done 💜
 
Thanks Laurie and Tillie. I just got him a new latex mattress topper. We also have a Roho cushion on the chair. I've been putting a special bedsore cream I bought on the area too. I have tried to put him on his side as well. We'll keep doing what we can for him.
 
We have a cushion for the wheel chair that I am having problems with. It is not a Roho but is a fancy cushion where the seat has
tubing to inset air. Trouble is that even with 2 people I can not get the clasp closed before the air seeps out. I even had wheel chair technician come out and he wasn't much help. Maybe I should look for a utube video on this.
 
If nothing else works, maybe overfill it to allow for air leaking until you get the clasp closed? I always put my finger over the valve stem after filling. What brand is it?
 
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