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My mother is now sitting in a chair or wheelchair or is lying in bed on her back about 98% of her day. She stands only to transfer.


Yesterday morning she had soiled herself in bed and during cleanup, I noticed that her buttocks are a deep purple. It looks jut like postmortem lividity. Later in the day, she was in her recliner and she had drawn her knees up in an attempt to take the pressure off of her buttocks and, upon my suggestion, took a very short walk (maybe 7 feet) which demonstrates that she must have been in pain because she never walks voluntarily.


I this, as I suspect, blood pooling due to inactivity or is it an indication of something else?

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In the latter months of my mom's life, she was bed or chair bound as she could no longer support her own weight to walk. Our home health nurse recommended we get her a waffle air cushion, the brand we got was EHOB. They inflate manually and come in a few different sizes. I got one to use for her wheelchair and recliner. There are other brands, just search for waffle air cushion and they will come up.

You will still need to reposition her occasionally as she sits or lays. Use pillows or rolled up towels or you can buy repositioning pillows. There are different kinds, some solid foam and some filled with beads that are more flexible. For now, while she's sitting, see if you can place pillows beneath one cheek or the other to relieve the pressure. If you can get her to walk a little, that is excellent. She should walk as much as she can. Feed her at the table and walk her there. Have her transfer herself as much as possible from wheelchair to whatever else. That will save your back too. I suggest you wear a back brace whenever you're lifting her. You can get that at Walmart.

I hope you can keep the pressure ulcers from forming. They are a bear to manage. Mom had one that really stunk until we finally found a medicine to pack in it that helped. Her last few weeks before she passed were so painful and the ulcers just popped up and wouldn't heal. I wouldn't wish that on anyone. Hugs to you.
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Hugs, M2M.

Palliative care is called palliative for a reason, you know. It's not a question of closing the file and giving up, it's about making the best of what there is, right in front of you, and making things go as easy as possible on your mother and yourself. Which is a pretty sound approach for any person who isn't a candidate for long-term recovery.

If your mother isn't frightened and isn't in pain, you're doing it right. Hugs again.
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Mom did have edema a while back... last year, in fact. The Dr. had her on Lasix and the edema went away. She stayed on Lasix for eons but the rehab facility took her off it. We have since switched doctors and the new one did not prescribe it.

Her legs have been perfect - no edema for a long time.

I am not sure which tests she has had for her heart. I will have to look ito that.

Mom has lost interest in eating but will comply when spoon fed.

I have tried everything to get her to be interested in something, anything again. She just sits there most days and ignores everyone.

I actually wish she would just find a way to tell me that she is done. It would be easier to just provide palliative care and wait for the inevitable
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Just a suggestion but can you get a body pillow to make it easier to lie on her side ?

After a couple of hours in my recliner and my bottom is nearly numb -

My mom spends upwards of 12 hours a day sitting at memory care and I get her a new seat cushion for her wheelchair about once a month - more often if they don't put a towel on it and leave her in a wet diaper which soaks through

If mom still likes to eat then maybe try to encourage a few bicep curls beforehand - even that gets the blood moving - I make mom count to ten in a couple of different languages while doing it so it seems like a game

Let us know what the dr says 
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She's extremely fatigued - unresponsive, reluctant to move much (once she's in her chair it makes sense that she doesn't want to go back to bed - too much like hard work getting there). Her blood is pooling. A while back you mentioned, I think? what sounded like some oedema.

Was her heart checked with an echocardiogram or just an EKG? The EKG checks for normal heart rhythm (its electrical activity), but it's the echo that tells you how effectively it's working (measures the blood flow).

Anyway. I hope her colour improves and the new care schedule helps.
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Veronica

The visiting nurse is not hospice, she is part of that 60 day post-rehab service from Medicare. The thing is, Mom isn't really dying OF anything. The UTI's are kicking her butt and causing ongoing dementia and weakness but all of her other labwork is good. Blood pressure and heart are good. Diabetes under control with diet and oral medication.

I don't know that mom prefers to stay on bed. She prefers to sleep and resist being woken but, once up, expresses no desire to go back to bed until bedtime. She will fall asleep anywhere, though. Her favorite place is her recliner.

She often seems to have given up and is also depressed or apathetic most of the time.

Sometimes I think I see signs of end of life but then again, she checks out as pretty darn healthy at the doctor's office and doesn't seem to be going anywhere any time soon.
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Momtomom, I looked at your profile and did not see any information about your Mom's condition or age. If I saw this kind of blood pooling I would be thinking of end of life issues.
Assuming I am correct which of course I have no way of knowing is the visiting nurse from hospice? if not have you thought of contacting them.
I would advise a hospital bed with an alternating pressure mattress or at the very least and egg crate foam. This would make it easier to turn Mom from side to side so the pressure is evenly distributed. Even in the best of care conditions bed sores do occurr.
If you don't have or don't want hospice mom's regular Dr can prescribe a hospital bed and anything else she needs.
There comes a time when the heart is just too weak to pump the blood round the body properly and this is the reason for the blood pooling. As time goes on your may find feet and legs also become a deep purple and cold.
If you have never experienced the absolute hell of being made to sit in a chair for 12 hours a day you will understand why mom prefers to stay in bed. Wheelchairs are especially hard because the seats have no cushioning.
Being out of bed is in itself a good thing because the patient is sitting up which helps breathing and discourages pneumonia.
Make sure the buttocks are kept spotless and no trace of fecal matter remains. Soap and water is fine, rinse and dry well and apply a barrier cream. Feces if left on the skin are not only very irritating but quickly lead to skin breakdown.
It sounds as though you are taking the best care of your mother but may need a little coaching in what to expect as time goes on. Transitioning from being sick and elderly to the end of life is not easy to predict but it is very reassuring to know what signs to look for.
You did absolutley the right thing posting here as many caregivers have already been in your situation and feel guilty because they did not know what they were looking at. you are very observant and recognized there is something wrong but need help in correcting the present issues. No need for guilt you are doing the best you know how and that is what really matters.
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No adjustable bed. Mom has a lift recliner and that is where she spends most of her day.

Today I will encourage side sleeping in bed and call the doctor tomorrow.

CM,

I appreciate the words of warning but I am not overly concerned. Mom has no heart issues and it is actually less physically stressful to get her in and out of the van than to get her on and off the toilet.

Google Toyota mobility assist. I love, love, love this van. It has been our best investment.
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Sorry, I just want to add: it isn't that I don't applaud the encouragement of activity as much as possible. It's a question of recognising when it isn't helping. The trip out (I hope your back survived it okay? :/ ) *is* a good thing to have done and a morale booster, normally; but it's also physically stressful and stress can and does cause A fib. I blushed to the roots of my hair when I matched the incidents recorded on my mother's pacemaker to dates and events in the three months preceding. Mind you, the fact that my mother experienced A fib episodes on *every single day* that she spent with my brother and SIL is also one reason why I'm still in an incandescent rage with them over two years later.

It is okay to let up, is what I'm saying. What's manageable for you and what's comfortable for your mother are the only priorities.
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An adjustable recliner can help change the pressure points, and there are special seat cushions as well, but I agree with CM, you need to get her off her backside until the skin returns to normal.
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I wouldn't cling too tightly to the principle of getting her out of bed, unless she wants to get up. What for?

The lividity means that the skin integrity is becoming an urgent issue. Truly, believe me, you wouldn't believe how fast pressure sores develop once they get under way. If it were me, I'd avoid having her sit upright until there's an improvement. Is her bed adjustable?
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Thanks for the fasten response. I didn't feel it was an urgent care issue so I am waiting for the doctor's office to open tomorrow. She also has a visiting nurse visit and I left instructions to have it looked at. I did make her lay on her side for several hours yesterday.

Mom sleeps about 12 hours (in bed at 9PM, forced out of bed at 9:30AM) and then spends most of her dab in her chair. I don't know how I would reposition her in her chair to keep the pressure off and I don't want her to be in bed any more than she is now. If only she would be more active. I did drag her out for a much needed manicure yesterday which meant four wheelchair transfers. At least that was something.

I am doing pretty well. I think I found a third caregiver so I will be covered from 7AM-6PM (with overlapping shifts/double coverage at times because no one can lift her by themselves except me). This will give me a chance to cook dinner when I get home. The new caregiver starts Monday.

Mom just suffered a financial setback so I am wasting for that to settle down before I look for a weekend person.
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It's blood pooling, and it's not good. You might want to make some calls and get her assessed. She'll need regular repositioning at this point or her skin will disintegrate, by the way, not that that's the main issue.

How are *you*?
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