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Mom is bedridden after falling at home, refusing rehab therapy and subsequent UTI. So I have 2 aides for about 3 hrs each am & pm . Despite our best efforts, her skin is breaking. We have applied zinc oxide cream and try to move her position every 2-3 hours and also try to get her to sit in the wheelchair. The aides are experts in moving mom to wheelchair but she screams in terror and pain from muscle atrophy, I think. I am by her side when they move her and try to reassure her but in her dementia state, doesn't understand. She has no pain when she's just lying in bed & is content when we leave her alone. But when the aides try to adjust the hospital bed to fix her diaper, get her ready to eat, she screams and yells,



Should we stop moving her from bed to wheelchair then? The VNA home care nurse says now to do the minimum and just keep her comfortable. But I feel she's not able to eat properly if she's sideways, ie, the drink spills, the food falls on the bed. Once she grips the hospital bed rails on her side position, she just refuses to let go. It so made me sad to see her eating lying on her side.



Im now getting a hospice eval now but mom'e eating and drinking fairly well in her sideways position (when I hold the drink and balance the plate) and is cheerful as long as we don't touch her. So she will be on hospice for a loooong time, I guess.



The VNA nurse mom in her dementia state is not a good candidate for the Hoyer lift. I think even for a gait belt mom will be screaming.



Should we just let mom eat and drink in the sideways lying position and not get her to sit up ?

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My mother had these same issues. I agree with the VNA nurse that you should do the bare minimum. That includes feeding. When you really think about it, feeding is perpetuating her life and thus her suffering. In no way is this compassionate, kind, or caring.

When they get to this stage, it's time for us to let go. Nothing will get better. Everything will get worse. I hope hospice will give you guidance as well.

I'm very sorry this is happening to you.
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I finally had to tell my mom's caregivers to stop using the Hoyer lift with her (no screaming, thank goodness), because her skin would tear every time she was in that sling. She was bedridden from that point on, and she only lasted about another three weeks.
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Weary, I'm just so sorry about your mom's steep decline. I would be advocating for lots of good meds for pain relief without any worry about addiction, hastening death or anything, to be frank. At this point, morphine and benzos are her friend if they increase lessen her pain and agitation.
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wearynow Jan 2023
Noted, thank you Barb. But will lots of pain meds reduce her leg pain? She's moaning a lot lately - her knees are very bent and now even if I touch her legs lightly, she screams.
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Just reminding...Wearys Mom was brought her from Indian because Weary found her Mom had the beginnings of Dementia and was not being cared for in her Senior housing. And brother would do nothing. She was able to get Mom a greencard but her Mom is not entitled to any of our healthcare benefits, Her health insurance Weary pays for. She cannot get Medicaid until she is a resident for 5 yrs, I think she has been here 3. She can get no SS or Medicare because she never worked in the States. So if Weary chose to put her in LTC, the cost would be Wearys responsibility.

I would wait for the Hospice eval before I purchased anything. When Mom is admitted, Hospice will provide what is needed at no cost to you.

Yes, skin breaking down is serious. Aides are not Nurses. They learn from experience. Your Mom needs a woundcare Nurse to tell you how to care for those wounds. My daughter is a WC nurse and other Nurses came to her asking how to handle certain wounds. When she gets on Hospice they will tell you how to handle the wounds.

Once Mom is evaluated, the Nurse maybe able to give you a timeline. (IMO, Mom doesn't have much longer) You then contact ur brother with the info. If he does not want to fly over, thats on him. You take care of you and know that you have been a good daughter.
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wearynow Jan 2023
Thank you, JoAnn! Im amazed at how well you remember my details,
Yes, I guess I can sleep soundly at night knowing that I'm doing my best - with the help of all the Forum-ers here.
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Once hospice is on board, they can provide a hospital bed, air mattress, and anything else she needs. Godspeed!
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wearynow Jan 2023
Thank you
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I worked for a dementia client who was bedbound for almost three years. She could no longer be transferred to a wheelchair.
Ask the nurse if she can order a pressure air mattress to be put on top of the hospital bed. It inflates and deflates in different areas so a person's weight isn't just in one position 24/7. It helps to prevent pressure sores.
You should always be raising the bed for her to eat. Making a mess is the least of what to worry about. Eating and drinking laying down is a choking hazard. In fact, she should be sitting up all day in bed if it's possible. Raise it slowly. This may help to upset your mother less.
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Natasana Jan 2023
Great point about the choking hazard. Choking and aspirating food or drink are real dangers.
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Has her doctor evaluated for a med to calm her anxiety about being moved? Even if bedbound, moving is quite necessary to prevent the awful bedsores. I’d think a calming med would be a kindness to her
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Someone has x-rayed her pelvis, yes? Definitely no rami fracture?
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wearynow Jan 2023
X ray of hip done which had a fracture and the Dr put in a titanium nail.
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Do you have hospice in yet? Has there been a wound care consult. Quite honestly, as an RN I hated zinc oxide more than any other ointment. It is impossible to clean off, it doesn't cover or work. You need to have wound care for skin that is breaking down before it does indeed break down. I know you have been here and I forget how old your Mom is, but it sounds as though the goal now is relief of pain and prevention of pressure sores that can cause sepsis. I am so sorry. If you have hospice they will show you how to position Mom for feeding, but no, she cannot eat in lying down position. Swallows are already weakened and this would cause choking and aspiration of food into the lungs where it would cause orthostatic pneumonia and aspiraton pneumonia.
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wearynow Jan 2023
Alva, what's the alternative to ZO? Both VNA nurse and the aides seem to swear by ZO. Anyway, I will ask for hospice wound care consult. Mom's 86
Thank you.
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Whenever I read a post like this I'm reminded of a previous forum member's mother who suffered from an undetected spinal break after a fall, she was finally helped with a procedure to inject the broken area with bone cement (vertebroplasty).
People here highly recommend getting an alternating pressure mattress topper to help with pressure ulcers. And if you don't already have it an adjustable hospital type bed would enable you to sit her up for meals and change her position throughout the day.
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wearynow Jan 2023
Ok, I will look into the mattress topper. Thank you. I have the adjustable hospital bed.
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I would keep moving her. This helps with a lot of different things, including skin health.

If it is too hard for you to hear her, go for a walk when the aides are transferring her. I have a hard time with the screaming and choose to be absent for anything that causes it, it's okay.
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wearynow Jan 2023
Ok, thank you. I can take the screams but it just breaks my heart that she probably is not understanding what's happening.
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Yes, it is only during her transfer or when she's moved. Once she's settled, she's is okay and smiling.

I feel throwing up when I think how badly mom has declined..I feel I cannot do this journey any more..
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BurntCaregiver Jan 2023
Zippy is right. Now would be the time to talk about facility placement.
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If her skin is breaking down, she probably isn't long for this world.

Get hospice to evaluate her and guide you on what to do.

Does she scream after she is settled into the chair? My granny did the screaming but, it stopped after she was settled. It can be unnerving but, sometimes you have to do whatever needs to be done.

Great big warm hug! This is so difficult but, you are doing great!
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wearynow Jan 2023
i asked my (idiot) brother to think about visiting mom one last time but as usual when it's time to step up, he's quiet. Anyway, Ive other family members who care about mom...just venting....
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