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MIL had a bout with congestive heart failure & fluid in lungs mid-July. Spent 1 week in ICU, 1 week in higher care hospitialization & then a week in rehab. I truly believe that ER/ICU saved her life! Its when she left ICU that she had a bedsore form. It was unstageable when she left hospital & went into rehab. Rehab (SNF) was a whole new nightmare.


I told MIL that we would get her out by her 86th birthday, Aug 2nd. And by golly she was FREE by 7:30 that evening. Bottom line, her bedsore is a stage 4 (down to tailbone). Luckily home-healthcare kicked in the next day & wound nurse came out & showed me how to dress the wound. By time she actually saw a wound doctor, it looked much better & he said the vibrant pinkness visable inside the gaping hole is actually new blood vessels. No infection (Praise Jesus!)! I've kept up on her vitals, and she's been in good ranges. She did need a couple of insulin injections when she was first home, but its all been good & stable since. For the last month and half, I've been her primary caregiver, which I'm totally fine with. She & I are good :). Her daughter & my husband alternate "night shift". Since they both work outside the house, it gives me a break & they get "mommy-time." So far so good.


Her PCP did suggest hospice and due to all of our ignorance, we agreed. So she's been on hospice for last month. We are considering taking her off since we (& she) now understand it better. She & we want her to get better. She hasn't been able to walk since she went to ER, but with hospice, there is no PT.


Which brings me to where we are now. She does not like her air mattress & wants to sleep on her memory foam adjustable bed. She doesn't really lie on her back, she does roll herself back & forth, side to side and even can sit herself up on edge of bed. So my question is whether anyone has had positive results on using a posturepedic-type bed on elder with existing bed sore?


I figured I'd share my the whole story since this is my first post. I've been stalking here over last couple of weeks & really enjoy the stories & experiences you all share. It really makes you NOT feel alone! Thank God I saw all the warnings to beware of BURNOUT. Hospice also made it clear that we all need breaks. Best info ever!

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Patty,
When you both see her doctor next week, have him photograph the wound. (She'll need to sign a "consent to photograph" form.) He should keep this photo in her chart IN CASE the SNF tries to deny it. (Especially if it isn't documented.)
Weren't they doing wound care on her there? Check the Nurse's Notes or a Wound care sheet. Anytime a person has a skin opening it has to be documented, also the size, any tunneling, depth, appearance of the wound, odor, edges, etc. If nothing is there, you've got a law suit.

Either way contact an elder law attorney. Your local Senior Center probably has referrals to lawyers for low to no cost. (That's how we got Mom's POA written up for just a donation).

Wound healing takes a higher protein and calorie diet than normal meals. Can you get a referral from her doctor for one consultation with a dietician who's familiar with elderly-diabetic-wound needs? Ask him for one when you go. Maybe it could be a phone appointment or she can copy some diets for better wound healing. You could check the ADA too online.

Again I'm sorry for all this unnecessary pain and trouble.
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PattyCares Sep 11, 2018
HA! Luckily when the in-home wound nurse saw us (the day after she was discharged from SNF), he took a picture from my phone to document it. So now I have that picture as well. He also did all those things you mention as far as measuring the sore and noting that the depth appears to go to tailbone, although there was lots of slough in way. MediHoney is amazing stuff! By time we actually were able to see a wound doctor a few weeks later, most slough was gone. Wound dr did some debridement of the wound, but said it was looking clean and he saw new blood vessels forming, so he was hopeful that it would eventually close. He also warned us that if we went on hospice, that he wouldn't be able to treat her any more. MIL went on to hospice the following day.
I've been keeping her diet higher in protein & supplimenting it with vitamin C drinks (Emergen-C)... having read that this is helpful for wound healing. But that is a great suggestion about asking for a dietitians assistance. Luckily she has been eating her 3 meals a day. Usually if she doesn't want to eat, its because she's constipated.
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We are definitely looking to remove her from hospice so that we can see specialist that can assist in her healing. We have an appointment with the PCP next week to get that ball rolling.
The really bad thing is that I'm not finding any documentation on the SNF/Rehab discharge that even mentions the bedsore! So annoying!
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The whole purpose of Hospice is to make her comfortable. If she is not comfortable then have them discontinue use. I hope the rehab noted the "redness" when she was admitted. Because her bedsore started with the hospital. My daughter had to testify in a case about this same thing. Where Moms sore is is hard to heal because not alot of tissue there. And her diabetes too like said.

There is no one who says Mom has to be on Hospice. If she feels she wants therapy then drop the Hospice. If things change, you can always go back.
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Hi Patty,
I am so sorry to hear that your SNF/rehab FAILED in her care so miserably as to have a stage 4 bedsore. You probably could get a law suit going for negligence, if you are up to the fight. That lack of care is inexcusable!

As a nurse, we were taught to turn the bedridden patient every 2-3 hours, side, back, side, back, etc.. Doing so relieves the pressure on the bony areas of the body with the weight of the person's body pressing down to cut off the blood supply. That is what a pressure ulcer or bedsore is-death of the tissue at a bony area (most often sacral (tailbone), shoulders, or heels of feet). They obviously let her stay in one position (on her back) for prolonged periods. If the skin isn't broken, lightly massaging the area can also get blood flow back to the area.

You also mentioned she has had insulin injections. Diabetes is a complicating factor in wound healing. She definitely should be followed by a wound care specialist and keep her glucose readings within normal range. However, persons with wounds need MORE calories to assist in healing. Ask her endocrinologist (diabetes doctor) about this and how to get increased calories without spiking her sugars.

Since you all are on the same page in getting her healed and well, hospice is not going to be your best bet. You will opt for treatments that hospice will not support. If you don't think she's got less than 6 months left to live and want to pursue treatments for her diabetes, wound, PT, etc., I would suggest talking about this with the hospice director or director of nurses. You will loose the hospital bed, bed protectors (Chux), meds and many other "perks" but, if you are able to financially provide those things yourself (or through her funds), then hospice should be stopped. Or, you could go along with the hospice plan and do the PT on your own payment. Insurance will not pay for both services. Also, if she needs to go back to the hospital, hospice will drop her until she is back home. She can then sign up again. You can do this over and over, I believe.

Finally, about the air mattress, there are other alternatives for reducing the pressure to the area. I believe there is a gel mattress topper with a foam back that we used in home health. You could try that. I believe Medicare will pay for one mattress every 5 years. Have her doctor write a prescription for one so the insurance will pay. There should be no trouble getting this topper through hospice because it can be a "comfort or pain relieving" device, not necessarily a curative device. It must stay with the patient when hospice is terminated because it is a personal care product.

I am sorry to report that bedsores do not heal quickly, especially with the diabetes and her age and lack of mobility. This will be a LONG recovery. As long as the wound looks fleshy pink and doesn't have any white covering or blackened areas or smelly areas, she's good to go.
You MUST keep her OFF the wound at all times. She'll get very tired of always being on her sides but it is the only way to heal one of these up completely (months down the road). She may inadvertently roll onto her back, so a pillow tucked into her back may be what she needs to "remind" her to stay off.

Good luck and God bless you for all you do and trying to assist in her recovery.
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PattyCares Sep 11, 2018
SueC1957, thank you so much for taking the time to address so many of the issues (I'm impressed that you were able to read between the lines 😉!)
I STILL get so angry when I think about the extent of her bedsore when she was released! The only thing on my mind is that it was infected (the smell was horrendous) and when I finally saw it, I wanted to cry. It looked so bad... there was an angry open wound that I thought for sure would give her sepsis and we would lose her over something that could have totally been prevented. I had to get her OUT! I was happy to find out that my sister-in-law did file a grievance with her mom's insurance company. And believe me I was so ready to get some legal action going... but my priority was to get my MIL healed.
Her wound has improved since she's been home (YAY!). The first 2 weeks were the toughest, for her & us. I think this is what the doctor based the hospice decision. MIL was frail & defiant & definitely depressed. So we agreed since hospice was presented as "high care". Never had we been told that she was terminal. So I called her doctor and asked her specifically WHY did she recommend hospice for my MIL? The dr said it was based upon the wishes of the patient. When we had our post-rehab dr visit, the dr did ask MIL if she wanted any more hospital visits. Of course she told the dr NO WAY! She just spent 3 weeks in hospital settings! She did not want to go back! Ooookay. I got it now. But it seems to me that without care from specialists, she just might pass faster. So I had a heart to heart conversation with my dear MIL and explained the situation. She & I have a weird respect thing between us and she doesn't get as defensive with me as she does with her own children. I told her what ever she chooses to do, we will honor. If she wants to get "well" that it will be hard work & require dr visits, PT & possibly surgery (she needs an angioplasty to look into heart damage). If she chooses to just let things go as is, we'll do our best to make sure she's comfortable till the end. She looked at me & said, I'm not ready to go in the ground! Lol! Gotta love her! I called and was told that her dr needs to put in the request to take her off hospice. So I made us a dr appointment which is still a week away... ugh.
It will be nice to be able to take her to have bloodwork done just so we know how she is really doing. We had been told that her bedsore may take a year or more to heal. As long as its healing and we avoid infections, I'll be happy.
She does get frustrated being in bed although she is really good about staying on her sides & rotating from side to side. The problem is when she sits up she refuses to lie down because she gets wrapped up on her coloring book or making jewelry with beads. I mean its good that she has things to keep her busy, but she gets so focused that she doesn't want to eat or lie down. When she's on her wheelchair we have a gel seat pad that hospice provided. She never complains that it hurts or is uncomfortable... again, it difficult to get her to voluntarily get out of it. So that is a problem sometimes.
Since she will no longer be paying the rent for Assisted Living, she does have the financial resources to cover what she needs, so the hospice supplies although helpful, are items we can rent or purchase.
Her diabetes has been completely diet controlled for the last 4-5 years. I believe all the chaos while in the hospital & rehab just kicked everything out of sorts. I do check her numbers daily (BP, blood sugar, temperature & oxygen saturation). She's totally stable at this point. She uses her oxygen only when sleeping and I periodically check her saturation when she's not "hooked up".
I'm hoping she will be able to walk again, but even if she can't, I want her to feel that she can be social again.

Thank you again for suggestions and apologies for such a long reply!
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People do have pressure sores that heal without using those mattresses but from the posts I've read everyone who has one is thrilled. I understand there are differences between various styles and manufacturers, do you know what your mother doesn't like about it?
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PattyCares Sep 11, 2018
I think she just doesn't like it because it is not "her" bed. She constantly tells us that she misses HER bed. Part of me thinks she really misses that she is no longer "independent" and she does not like having her kids tell her what to do. She was in assisted living 1 bedrm apartment and getting around by using her walker just 2 months ago! This has been a huge life change for all of us...
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