Body stiffness

[quintok555]

Hi,

I am a caretaker for my mother and I wanted to ask if it’s normal that my mother can’t stay in one position. For example, every 30 minutes she request to be transferred from her wheelchair and to the recliner. This is throughout the day and night and it’s putting a lot strain on the family. We also hired an aide and they usually quit because it too much work to keep transferring her. Please note she doesn’t sleep in the bed because she feels she can’t breath and feels more comfortable in the recliner.

 

[KimT]

Does your mother have a hospital bed and use BiPap? Those two things should allow her to sleep in a bed. The bed can be adjusted up and down.

What did the healthcare worker expect? That's why it's called a job! Is she using a manual lift or electric lift or no lift?

 

[lgelb]

Yes, at night, she should be able to sleep comfortably in a bed.

During the day, needing a transfer every half hour is not normal. What exactly is not comfortable about her wheelchair and recliner? There are many improvements that can be made.

 

[quintok555]

She keeps moving because she doesn’t like the stiffness. I bought a temperpudic bed that auto reclines and she still doesn’t use the bed. Sometime I wonder if she developed OCD after being diagnosed with ALS. She also uses a bipap but only has it on for an hr and then she wants to move to the chair. It’s been so hard because I sometime lose my patience with her and she ends up crying.

Kimt
The aides are doing manual pivot transfer for my mother when they transfer her from recliner to wheelchair. My mother refuses to use a joyer lift.

 

[lgelb]

I am not sure if the bed she has is angle-adjustable for both the head part and the legs part? That kind of bed is what she needs.

A Tempurpedic mattress not have enough support for her failing muscles and weak joints. Most people end up with medical grade foam, as the mattress has to bend a lot in a hospital bed where there are many different positions.

It appears that she is not falling into deep enough sleep if she wakes up so often, so I would consider the bed, mattress and pillow closely, making sure her shoulders and elbows are supported, along with her hips and knees, and maybe taking a look at the BiPAP settings can help, along with evaluating scents, dust, noise, cold/heat and dryness that can make sleep difficult. Is she using the humidifier in her BiPAP, with new distilled water every day?

You can post a picture of her bed if you like.

 

[affected]

For my Chris it was a mixture of starting on Endep, an antidepressant, and using a hospital bed with an alternating air mattress.

This made a huge difference in allowing him to stay in the bed all night and sleep a fair amount of that time. After a while we added 5mg morphine before bed too.

However many people here find MM at night is far better than morphine.

I would definitely look at the bipap settings as well.

Asking to be moved every 30 minutes all day and night is a sign that something needs to be changed, it is not a good pattern of care either for your mum or for any caregiver to keep up.

 

[KimT]

I've observed two PALS at local support meeting who are in constant motion. Both are limb onset and cannot use their legs. One is constantly moving his chair legs up and down. We go out to dinner after the meetings and I asked him. He said his legs felt stiff and "antsy" all the time. The other one doesn't speak so I asked his wife why he continually adjusts his chair and she said because he is in pain and it somehow relieves the pain.

I have an adjustable bed but I've tried a tempurpedic mattress and I thought I was suffocating. Besides being too warm, the smell caused me to have a migraine. Then I ordered another similar one from Germany that advertised "no odor" but it had odor and caused the same problem. I'm chemically sensitive but I'm posting this because, after my diagnosis, it seems like I'm even more sensitive to smells and noises than before my diagnosis. I also have a lot of pain but can still sleep flat with a very thin pillow, with or without BiPap.

I plan on getting a hospital bed and figuring out what I'll need in the way of mattresses. My bed is a queen and it does adjust quite a bit, both legs and head but it doesn't elevate and it doesn't have Trendelenburg or reverse Trendelenburg so it's not a bed I would be able to use once I need more assistance.

 

[bigmark1954]

I would suggest not getting a Memory Foam mattress. I bought an adjustable bed with a 10 inch thick MF mattress. I like that the bed is adjustable, but the mattress is difficult to change position on. As I progress I will need to find an alternative.

 

[lgelb]

Yes, memory foam is more for healthy people to sink into, since they can get themselves out. With medical grade foam, as a hospital bed mattress typically has, you don't sink in, but are supported.