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Kim C

Active member
Joined
Jul 31, 2013
Messages
82
Reason
CALS
Diagnosis
07/2013
Country
US
State
KY
City
Nicholasville
Mom is beginning to have reddened area on sacrum. Feet are also quite swollen. I understand the feet are swollen because all she can do is sit and fluid is leaking/pooling in the feet. Would Lasix (fluid pill) help here. Also the nurse aid who comes in to help my dad daily said mom was getting a red area on sacrum and we needed to be proactive to prevent skin breakdown. Mom sits all day long. I guess she needs to lay down some during the day to get pressure off the area. Nurse aid suggested dycem also to keep mom from sliding down in chair.

This ALS is hell. we have no support from the ALS clinic in Lexington. I call them; they never call back. Supposed to be a big-time clinic but they haven't done squat for us.
 
Mom is beginning to have reddened area on sacrum. Feet are also quite swollen. I understand the feet are swollen because all she can do is sit and fluid is leaking/pooling in the feet. Would Lasix (fluid pill) help here. Also the nurse aid who comes in to help my dad daily said mom was getting a red area on sacrum and we needed to be proactive to prevent skin breakdown. Mom sits all day long. I guess she needs to lay down some during the day to get pressure off the area. Nurse aid suggested dycem also to keep mom from sliding down in chair.

This ALS is hell. we have no support from the ALS clinic in Lexington. I call them; they never call back. Supposed to be a big-time clinic but they haven't done squat for us.

Hi Kim, Does your mom have a nurse coming by on a regular basis? You say there is a HHA is she hired privately or work for an agency? if she is through an agency. She needs to report these problems to the nurse/case manager. Your moms feet need to be elevated. Hopefully the red spot on the sacrum has no broken skin. She needs to change positions throughout the day to relieve pressure points. Eating well & staying hydrated will also help in preventing skin breakdown.
If your mom doesn't have a home health or hospice nurse coming. You should really consider that service.
 
Hello Kim, Raising your Mom's feet up on a stool would help some with the swelling. A couple of things that might help her sacrum are, Tegaderm or Duoderm, they are both used to provide a cover and padding for red areas. The nurse could tell you about them, or perhaps something newer. We used them in the nursing home and I used them for my sister.
Hope this helps you some.
 
The nurse aid is from a private pay nursing agency. Mom was discharged from Care Tenders a few weeks ago. Perhaps I need to get someone from that group back out for the skin issue.

This is all just overwhelming me. Just last week mom started having difficulty sucking through a straw. Now we are giving fluids via a teaspoon/tablespoon. Now the skin problems. Feet have been swollen for a while. I just don't think I can cope with all that is going on. I am completely stressed out.
 
I understand how overwhelming this disease can be. I am on hospice service & they are a very big help & are also able to take the stress level down to manageable for me & my husband who is my caregiver. They provide HHA, nurse, social worker, all meds & all supplies & equipment needed. They will need a doctor's order to admit her to service. They are a huge help!
One way to get liquids in your mom is by feeding her Jello. Jello is nothing but liquid when it hits the stomach.
 
Kim, you should call hospice and see if they will evaluate her. Hospice in not just about the very end, it is about making a patient comfortable as they approach the end. your whole family can get emotional as well as physical help.

in the mean time, try to readjust your mom every hour during the day--elevate her feet and legs, lay down on her side, maybe use pillows under one cheek and then the other to change the pressure points. try to keep ahead of the issue before the skin breaks. healing is harder than readjusting...
 
Definitely call Care Tenders and have them guide you through the processes of getting RN visits at least weekly to anticipate and prevent worsening of these and other problems. The nurse aid was great to spot and report the red spot on her sacrum and it is that spot that is going to provide the justification to Medicare/insurance to kick up her care to included home visits by an RN.

Kim, you are already feeling overwhelmed by your mom's illness and care needs so you are going to hate what I have to say. I know all of this means more work and problem solving but it is offered with the hope that you can see it as a way forward in keeping your mom comfortable and the information you need to feel you can help, not feel helpless.

Lasix will help reduce the swelling but it will mean more frequent trips to the bathroom, dehydration, higher risk for blood clots. Lasix only masks the underlying problem of poor blood flow due to loss of mobility. Swollen feet cannot be fixed by medications or even surgery. If her feet have been swollen for a long time, there is already irreversible damage to the veins that will only make them swell worse in the future, but you can prevent that! What will help requires simple measures to reduce the daily swelling; correct positioning of the legs to reduce the pressure on blood flow, correct use of a recliner, the use of a wheelchair rather than a recliner, elevating the foot of the bed not the knees, and more. Please take the time to read
http://www.alsfrombothsides.org/swelling.html
It is all the information I wish I had known before my feet, ankles, and lower legs became water balloons! They are much better now and seldom uncomfortable so relief is possible!

If the red spot on her sacrum is just a ”rug burn” from sliding down in her chair, Tegaderm or a similar dressing will help. A sheepskin mat on the back and seat of her chair will also reduce friction and the resulting shearing force injury. Odds are however, that pressure is also involved in the skin damage. That damage is deeper, painful, and cannot heal as long as the pressure is still there. If the sore is more than a superficial raw spot, it is a pressure sore.They are not called bed sores any more because they are caused by pressure, in bed or out. The pressure squashes the blood flow to the area and the layers of tissue and even muscle begin to starve and die.

So where to start? First the sore has to heal. If it is deeper than skin deep, she needs to get off her bottom all day every day until it heals. She needs at least a foam pressure relief mattress on her bed and to lie on her sides as much as possible. To get Medicare/insurance to cover the cost of a pressure relief mattress and more frequent visits by a nurse, there will need to be documentation by a nurse of the wound. A snapshot is great proof and provides a way to compare day to day to see if it is healing. When she is up again, she needs to sit on a high quality (yes, expensive but covered by Medicare/insurance) cushion. A ROHO air cushion or a gel cushion is the best. When you add the cushion to her chair, make certain that her feet can still reach to sit flat on the floor or add a low platform for them -- NOT a footstool under her ankles. Also add pillows under her elbows so that her arms are not pulling on her shoulders.
 
We had a Hospice consult a few weeks ago. They said mom was not eligible because she could still drink & swallow.
 
We had a Hospice consult a few weeks ago. They said mom was not eligible because she could still drink & swallow.

Wow! That is not the way hospice is suppose to work. Is there another hospice service in your area? Home health would also be okay. Your mom desperately needs the nursing services. After she is evaluated by an admission nurse. She will qualify for up to 3 visits a week by a nurse & HHA.
 
when my ankles were swelling, I used elastic bandages and wrap them & it helped reduce the swelling. I tried lasix but it through my electrolytes off.
 
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