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May 4, 2006
I'm a CNA providing 9pm to 7am respite care for a 50yr old female diagnosed 2 1/2 years ago. She wears a bi-pap 24-7 and weighs perhaps 70 pounds. She does have care 24-7 from various health organizations, and from her mother and sister. She can only move her neck from side to side on a pillow - there's no strength to hold it up at all. All other muscles have atrophied (sp).

My questions relate to pressure sores developing due to her low weight. She is in a hospital bed with a foam pad on the mattress. It's not an egg crate foam. Her sacrum in very sore. We are putting patches on it - not duoderms; I can't think of the name right now. We also use a material similar to sheepskin to add padding.

Her right shoulder blade is also a sore spot. Due to her low weight, her shoulder blades are on the bed, but her actual shoulders are perhaps 2, maybe 3, inches off the bed. We have material similar to sheepskin which we pad there to make up the difference.

Neither area is open, and I hope to prevent that from happening. She does ask to be on her left side, then her right side and to her back throughout the night. I use a wedge and knee pillow to help position her. She does not sleep very well.

Her neck is very tight and sore. We use a Bed Buddy moist heat rice pack to give her comfort.

I believe she is near the end; perhaps the summer months. She takes nothing for pain. She does take ativan for her anxiety, which can be quite high sometimes. She's also suffering with heat flashes; just what she doesn't need. They feed the anxiety. Her speech is becoming quite weak.

Is there anything I've typed here that gives you thought to offer any suggestions? Any comments, suggestions, thoughts would be deeply appreciated. I intend to stay with her to the end.
I have not had to deal with this so I really don't know what works. I'm just posting my thoughts. I have recently purchased a silicone foam mattress topper for my husbands bed and made him a chair cushion from some of the foam too. The silicone mattress comes in firm or soft and in different thicknesses. It has small holes all the way through about every half inch and retains it's spring very well. It is not hot like memory foam can be. LB finds it very comfortable. I know air mattresses are also available and they let air in and out continously. That would probably be best but I don't know what your resourses are. The silicone foam can be bought from most any mattress factory at a reasonable price.

Bless you for caring enough to search for a solution to her problems.
Hi CNA. I admire your dedication to your patient. I use one of the egg crate type pads and it is really comfortable and doesn't heat me up too much in the warm weather. You didn't post where you are from but Wal Mart here in Ontario sells a 1 to 1 1/2 inch one that is about $30 for a single bed. It's better than nothing but Shoppers Home Mart sells one that is about 2 1/2 inches thickat $55. Well worth the extra money. It was so comfortable my wife got one to ease her back pain.
My dad also uses an egg crate mattress. I know that it is very important to continually move your body around so you do not get bed sores. I have a cousin who is a quad and when he is in bed he needs to be moved every few hours or so to prevent bed sores. Once you get a bed sore, it is so difficult to get rid of it as you probably already know. I am sorry that your friend is in the condition that she is in. It really breaks my heart, but she is so very lucky to have a CNA like you who is willing to research things on his/her own time. Good nursing is very difficult to find (my family has experienced this) and when you do find good nurses, they are simply life savers and angels from God. Keep up the good work and do everything you can to lift your friends spirits up.

PS- Does your friend have a wheelchair that she can be strapped into during the day to change her body into a sitting position instead of laying down all the time? I don't know if she would be capable of getting in one or not, but sitting up might make her feel better too.

Is your patient with hospice yet? Sounds like she should be. The hospice nurses have a wealth of resources that they will pay for too. If she is with hospice already, have her family ask for something called a low-air-loss, alternating pressure mattress. They're much better than the egg crate type if she is very atrophied. There are also wheelchairs that are called tilt-in-place that can be positioned so that she can sit semi-upright and comfortable all day long. It may mean moving the Bi-Pap whenever you do this, but I know from dealing with my Dad that it makes all the difference in the world to be able to sit up and watch the world, or visit with people.

Thanks for being such a caring person. I agree--it really is hard to find caring people like you who will go the extra mile to make their patient comfortable. We're here any time you need help!

I have delt with this and it is important to keep her moving. A wedged pillow used to prop her up can cause pressure at the base of the spine. My wife ended up with an open one there. To aleviate that we used a wedge with a shallower incline.
Good Luck
Thank you so much for all the kind responses. She is such a special lady, and I feel honored to help her out as much as I can.

Yes, she is with Hospice. I think I will suggest an air mattress. And I also think she needs to consider some pain meds. She currently is taking nothing at all. Just this week now, she complains that the heated rice pack (the Bed Buddy) is making her breathing more difficult, so I'm at a loss for her neck pain, other than pills.

I've been searching for some type of a pillow that lays flat and then gently slopes up into a pillow, with the ortho neck support. Ideally it would help her shoulder blades. I see in my mind what it should be, and just haven't found anything here on line yet.

And yes, she is in a tilting wheelchair during the day. We just got a new rubbermaid cart to make keeping the bi-pap right with her easier. She can even go out on the deck now with the new cart. She even made it to her daughter's soccer game somehow the other day! The mother of a very recently deceased PALS took her; what a big day that was for her, both mentally and physically.

Thanks again for the help and support. I'll be checking in probably daily. Bless all of you!
I don't have ALS, but I suffered from bad neck, back, and head aches and found a pillow that works well for me. I'm not trying to sell it or anything, but it looks like a long skinny cylinder cut in half the long way. The curved part cradles your neck really nicely and keeps your spine straight rather than having your neck all cranked out of position. Let me know if you want me to try to find it on the internet and I will.

I am interested in your pillow for myself! Where did you get it? I get headaches all of the time and maybe this pillow could help me out.
Yes, Marcia, I would be interested to see this pillow on line; could you just post the link here as a response? Thanks!
Just an update on my client. I've been on vacation for a week and will see her tomorrow night. I'm sure she's lost more weight (don't know how) and will be in more pain. She's refusing to take even Motrin or Tylenol.
Thanks for the update CNA. Thank you for being a caring person for this patient. A lot of caregivers just look at it as just another job. Obviously you are special and don't think that way. AL.
hi. i use a tempurpedic half round pillow and also a rolled towel around my neck. the pillow is perfeect cuve for neck/head support...and the towel gives extra security and helps move head by pulling gently....... you may need to experiment to find a comfy thickness for your friend... but together it gives support and is soft enough. i bought my pilllow at bed bath and beyond... go to specialty pillows.
good luck in finding some solution.
Another update. It's now October 20th. She was DX in Sept 2003; in Nov 2005, she was given 3-6 months by the ALS clinic. She's still not taking any pain meds, has lost more weight, sallowing is becoming more of an issue. We just got a suction appliance to clear mucas and salivia she can not handle.

Severe abdominal pains are becoming an issue. We're using companzine (sp) suppositories as needed. She does take Senna to keep her bowels moving, but only hours on being off schedule is a problem. Her neck pain isn't so much an issue anymore.

Her anxiety is quite high; I honestly don't know how she is holding on.

I really feel her time is nearing. Every night, I wonder if this is it? What will it be like? Can I stay strong for her in those last moments?

Thanks for all the empathy/sympathy here.
Hi CNA I have a site from Hospice that may help you cope with the time you are facing now. If you would like I can send it to you via private message or post it here if anyone else would like to read it. It can be a bit emotional reading it at times as it discusses making things more comfortable for the patient and less stressful for the caregiver. Let me know if you would like to read it. AL.
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