CALS Roll Call Continued

I took PALS to the emergency room this afternoon. There has been a red spot on his lower leg that I feared might be a clot The MD felt it was not hot enough or swollen enough to be a clot. He encouraged me to take a picture of it and if it gets worse, to contact him.
We are not good about putting on the elastic stockings. I feel I just don't have the energy or strength to put these on over swollen feet. Do other PALS wear the stockings and is there a brand that is better?
 
Most PALS as far as I am aware do not use or feel they need compression stockings. For preventing DVTs, keeping hydrated and doing active or passive range of motion exercises/receiving anti-edema massage, as well as engaging in whatever voluntary movement is possible, and regularly changing body position in the wheelchair via tilt/recline/foot rests, do the job for the vast majority. If your PALS is at a particular risk that led to the stockings, of course, that would be different.

Best,
Laurie
 
My husband used to wear compressions socks every day to work (he was on his feet all day). He has varicose veins that would ache if he didn't wear them. We actually just realized last night that his restless legs at night started when he retired and stopped wearing the compression socks during the day! He started wearing them again yesterday to see if it helps with his restless legs issue at bedtime.

But he is still very mobile so he is the one putting them on and off. I remember trying to get them onto my grandmother's legs years ago after she had surgery and it was impossible!!! We ended up getting some at the drug store that were much looser (bigger size and less compression) than the ones the doctors sent her home with.

My husband always bought the brands at the drug store (I don't think the brand really mattered). The key was to get the right compression. If the compression level is too much, it is really uncomfortable and getting them on is a nightmare.
 
Thank you! I don't know what we'll do. PALS purchased some compression socks and these are helping the swelling in his feet. I just don't know if I have it in me to put them on....
 
I wear compression stockings because of bad veins. The dr I went to prescribed Jobst stockings, which I personally don't like. I also like the drugstore ones better.. One good thing was a video by Jobst showing the "heel pocket out" method of putting them on which works well for me. You'd have to modify it to put them on your PALS, but the method may work. I've attached a YouTube link. (If the link doesn't show up, message me and I'll send it to you.)

 
Helpful video! Thank you! The video makes it seem so easy! Thank you again! PALS still has the red spot on his leg. It doesn't look much better or worse to me...just a game of wait and see.
PALS has less and less use of his hands/fingers/arms. The requests are constant. He needs help with BIPap every hour, wanting it on..wanting it off. He needs help to set up the computer and with his meds. He needs help with most everything. Amazingly he still feeds himself. No one request is difficult....it is the frequency of small requests and 2x a day to the commode that eats away at the day. One must make a conscious effort to try to do something besides prepare meals, clean the house and respond to all these requests for assistance. I am exhausted putting PALS to bed in the evening.
 
Mary, it must be so exhausting to have so many requests for help. I hope you can take a few moments for yourself every day.

My husband's daughter and her family are in town this weekend. We haven't seen them in 2 years! Today we got together with them and his other daughter that lives here and her family. I was very nervous since his health has obviously changed since we last saw them and I wasn't sure how she would react. I tried to give her a heads up before the visit, but it is hard to put it all into words. Well, it went great! My husband was very excited to see her and was totally engaged and upbeat. We stayed 3.5 hours! He usually is ready to go after 15-20 minutes anywhere. His daughter thought he looked fantastic and everybody had a great time. It was a total success! All the adults are vaccinated (including us), we mostly stayed outside and we kept a healthy distance from the unvaccinated kids, so I feel like it was reasonably safe. And honestly, it was probably worth the small covid risk so that my husband could have a good visit with his daughters.

Lately I feel like I'm emotionally running on empty. I'm always trying to find solutions to issues and put a happy spin on things. And frankly, sometimes there aren't any good solutions and some things just suck! It is so hard to figure out which things I need to accept and which things I can make better.
 
Robin so happy you had a good visit with you husband's daughter. It's been so hard with the pandemic. I hear you about no good solutions. Mary I feel worn out every day. I do have help weekdays and that makes a huge difference.

Having more problems with my PALS' friend and his wife. The wife is a nurse so they are criticizing everything I do. I had to take him for a feeding tube exchange last week and because he can no longer easily operate his power chair I struggled with driving it in the small spaces in the elevator and van. My PALS mentioned that I struggled to his friend, who proceeded to tell my PALS that I should have put him in the flimsy push chair in the van instead, and I am not a capable caregiver because I didn't do that. Now THAT would have been dangerous. He wants to fire our current caregiver and have his wife interview and hire and manage 24 hour caregivers to be in my house. Oh and I will have to pay for them. And apparently until I agree to this demand his friend is refusing to come over and see my PALS.

Ok enough venting. I'm so excited because my family is coming out from the Midwest to visit. My cousin and her husband are on the plane now. My other cousin's daughter will be here Wednesday. I haven't seen them in 3 years. It will be great to be surrounded by people who love me.

V
 
Wow V don't people love to 'solve' all our problems (insert me clicking my fingers)

I'm so glad you will have time with family, absorb every bit of the visit and recharge!
 
RMT yes...it is the the old verse Change the things I can change, accept the things I can't change and the wisdom to know the difference. So glad the visit with your PAL's family went well! 3.5 hours is a great visit! My family problem is where will my family from out of town stay and will they rent cars or will we get a large van to take them to the wedding. .......One issue we have is finding a room with a bed where the Hoyer Lift can slip under the bed....many beds in hotels go right to the floor. So many PALS travel. Is this a problem with the Hoyer Lyft? Do you just bring the Hoyer Lyft through the lobby? What about the commode?
 
V...Sorry missed your post. That is unbelievable. How rude!
 
V, wow! I would have totally lost it with those people! The nerve!
 
@Mary2 - We struggled with the same situation with the Hoyer fitting under beds. But at the same time, Darcey wasn't doing well in beds other than her hospital bed with the Alternating Low Pressure Air Mattress. So for what were typically 1 or 2 night stays, we would put her PWC into a sleeping position and get her all cozy with pillows and blankets. I'd use position her PWC next to the bed and use that side with pillows to hold that arm in place. For the non-bed arm, I'd often tuck it into place with her blanket.

Our Hoyer was one the folded up nicely... which was great for transport and also for taking from the car and into the hotel room. And her commode also folded up somewhat. We'd either bury it in with luggage which I'd put on one of the rolling carts that hotels have... or, if by itself, I'd put it on the cart and cover it with a towel so it was less obvious as to what it was.

I learned that it was necessary to actually CALL the hotel and talk with staff. I'd explain what I needed to know about their so-called "Handicap Rooms"...
  • Was the doorway to the room wide enough for the PWC? (You'll need to know how wide the chair is)
  • Was the doorway to the bathroom wide enough for the PWC? (Didn't worry about this anymore after I was doing Hoyer/Sling transfers to the commode)
  • Was there an opening under the bed for the Hoyer legs to pass? And if so, how high was that opening?
  • Was there room to maneuver the PWC once in the room?
Once I asked them those questions, I explained how frustrating it was to arrive to a hotel, go up to the room that someone had said would meet our every need and then find that they were only guessing and were wrong (about any of it). So I'd ask if they would actually have someone go to that room when it was empty to PERSONALLY LOOK AND VERIFY so we'd have no surprises on our arrival. And if that person could not (or would not) do so, I'd ask who could? And if they were not willing to personally verify, I apologize and tell them that I'd have to look to another hotel for our stay. I'd always try to be nice during the conversation... sharing the frustrating experiences caused by lesser hotels... and try to create some empathy and understanding from the person I was talking to.

As always, I hope some of that helps!

My best...

Jim
 
Jim, Pals and I thank you for your discussion. I will try this approach over the phone. Thank you again!
 
We had our 3-month ALS clinic tele-visit yesterday. The only change is that my husband can't squeeze his eyes shut tight anymore. That was a surprise to both of us! Not something he does on a regular basis apparently, since he hadn't noticed, but it made me sad to have a new thing he can't do. But it could be worse as his arms and legs are still working. And he can open and close his eyes (and blink) just fine, so that is good.

This morning we had a call to get a VA Adaptive Housing grant going. We don't need to do anything right now, but they suggested we get the ball rolling. Wow, it was so overwhelming! There are a ton of things to do and the process sounded like a total pain in the *ss. And then they want updates every 30 days! But it is a lot of money that they would cover, so I shouldn't complain. We haven't even really thought about how we would modify the house, so I was not mentally prepared for the call. I know I should start thinking about these things now, but I don't have the mental space right now. I think I'm going to give myself a few weeks to just think about what we might do to the house, and then start working on all the paperwork.

We both love baseball. My team is the Red Sox and his is the Dodgers. I'm excited the Red Sox won last night and I'm hoping the Dodgers can do the same tonight! We love this time of year with both baseball and football to watch almost every day. It has been so nice to watch all the games together!
 
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