Follow
Share

My MIL has been totally bed bound for a year and her skin has been perfect. I have given her excellent care all along and have been proud of her skin.........like it was a reflection of my care. Well, about 2 weeks ago, a bedsore developed on her tailbone and rapidly - super rapidly - grew big and deep! I have had hospice services for 12 months and we were all surprised at the speed this sore came on. I went online to seek any and all advice for treating this thing and after about an hour on the internet, I left the computer in tears. Wow, such a stigma regarding this difficult subject. Lawyer sites popped up everywhere and every post pointed to poor caregiving. I have given my MIL excellent care for 2 years in my home and my spirit is crushed after reading these posts. In my heart, I know that I am doing all that I can. Yes, I am turning her every 2 hours, applying dressings, feeding her protein etc etc. Isn't there anyone on this site who has struggled with this despite good caretaking? I am almost afraid to bring it up as the stigma "makes me look bad." I guess I'm hoping to find some validation?

This question has been closed for answers. Ask a New Question.
She is still here Maria due to the wonderful loving care she is receiving from you. I took pride in the hardest job I have ever done in my life. But I would do it all over again to have my mom back. Prayers for peace and comfort for you 🙏.
Helpful Answer (2)
Report

Thanks all. It appears that the second red spot has swelled and is about to break open despite heroic efforts by us (hospice and me).
Up until Feb 2015.........I never felt guilty about MIL's care - rather the opposite. Proud that her tough as shoe leather skin was a reflection of my good caregiving.
When the first sore began to appear........I aggressively searched on line for additional tips etc. That's where my guilt struggle began.
Rosebush, you were right.........unless a person has experienced treating a runaway bedsore, he or she won't understand any of my comments.
A year ago, I would have thought "bedsore - oh my goodness.........poor care!!"
Is it always a well kept secret due to great misunderstanding? That's fear.
And then the lawyers ...........................................
I feel little guilt personally BUT around others...............it's more than uncomfortable when ....and if ....they "find out"!!
That's why I continue to reach out on this site and I greatly appreciate those who took time to encourage me through this crazy, unending, bedsore saga.
For what it's worth, my MIL has a strong, stubborn, personality................and has been on hospice for over 2 years (bedbound for 11/2 years). We are all respectfully surprised that she is still here.
Helpful Answer (1)
Report

I hope this helps you with the guilt you are feeling.

It helped me to write about it in a journal - where nobody judges.
I came to realize that what I was really feeling was way more complicated that guilt.

Guilt is appropriate if you've done something illegal or immoral, and you have absolutely not.

When you get a moment to think at night, get a thesaurus out and start listing all the feelings in there that apply to you. There are so very many ways to express being upset. Once you get going, it's not hard to let them just come one after the other. Get them all down on paper.

Fear
Anger
Resentment
Insecurity
Distress
Frustration
Worry
Anxiety
Helplessness
No control
Inadequate


Etc. You can do your own list. I found it to be so much more precise than saying I was guilty. If you can stop labeling yourself as guilty, and use other words, you may find that you aren't worried about what other people think as much.

And you can describe to them EXACTLY what it's like to do such a high level of caregiving and find that it doesn't all work out like on TV. Give yourself a break, and tell yourself that it's OK. You are doing all the best things and what's going to happen is what's going to happen.

The psychobabble term for this exercise is "unpacking", but it was really helpful for me to deal with everything coming at me at once and criticism - real and imagined.
Helpful Answer (3)
Report

Anyone who has "no" experience....
Helpful Answer (2)
Report

Anyone who has experience with a pressure has no right to judge. This is just something that happens to some people regardless of the level of care. watching our loved ones suffer is the hardest thing to do. Take pride in the obvious loving, wonderful care you take of your mom. She knows you are doing your best and screw what anyone else thinks. I commend you on what you are doing, I know it is not easy 😍
Helpful Answer (2)
Report

My Mom developed a stage 4 pressure sore in a 5 star rated rehab facility nearly a year and a half ago. She is now in my home bedbound. It has not healed but I have gotten it to shrink with protein, and staved off infection using colloidal silver with saline on the packing gauze. The skin is the first thing to go on a declining person, and high blood sugar can add to the occurrence of these wounds. I have heard stories of people developing these wounds after long hours on an operating table even. The tailbone wounds seem to be the worst and most stubborn no matter who is caring for the patient.
Helpful Answer (2)
Report

Addendum: that is " me and hospice vs the pressure sure."
Helpful Answer (1)
Report

I originally posted this question in Feb 2015.
The pressure sore has remained the whole time .......stayed the same no matter what. As a result of constant care, it's remained in a "holding pattern" but it's still the same huge, ugly gaping sore with drainage etc. Hospice nurses come twice a week. MIL is also prone to coughing and aspirating so all meals are stressful as I worry about her choking every time she eats or drinks. I've followed every "rule" advice, etc, etc. She's just hanging on forever and ever. She's lost a good bit of weight since February but I'm giving her very high protein things that she can easily eat..................
Anyway, about 2 weeks ago we noticed some discoloration in her skin about 3 inches from the pressure sore. Despite our efforts, that spot has now opened and we fear that it will become one giant sore. The battle between me and hospice and the pressure sore goes on.........................but I'm discouraged and exhausted. I don't know how or why she is still alive but the guilt is all on me. Now I have Thanksgiving coming and I really don't want family checking her out and judging me. They probably won't but it's another stressor for me. I am having dinner here because it will likely be her last Thanksgiving............ Yes, I thought that last year too.
Helpful Answer (2)
Report

I am a retired RN. I worked in a hospital many many years. We were taught that pressure sores were preventable. And yes we were repremanded if one formed because they cost the hospital money. But I can tell you I have gone home from my 8 hr shift , leaving a patient with baby smooth skin and come back the next day to find a bad pressure sore on this same patient. Yes lots can be done to prevent them but they do happen regardless of the best care in the world. So just know it wasn't your fault. I give it to all you wonderful people who take care of loved ones who need so much care. I take care of my husband but he is not bedridden yet.
I helped take care of my mother in law who was and I know it is never ending work.
Helpful Answer (3)
Report

Forget about the stigma and learn as much as you can about wound care from the visiting nurses. A pressure sore can develop in under an hour given the right conditions and not manifest itself until it is stage 2-3. The rapid development is hard to stop which is why wound care is a specialty in medicine and nurses are specifically trained to deal with it.

If you know you are doing the best you can, then hold up your head and be proud. People can develop pressure sores in hospitals and nursing homes. We caregivers are amazingly hard on ourselves - so listen to what the nurses are tellilng you and remember that whatever the outcome you did your best. Relax and go about it methodically.
Helpful Answer (1)
Report

partsmom...I am betting that would be good. I know my Mama always used apple cider vinegar on sores, rashes, skin issues in general and it always helped her she said...and I think it did because I know it always healed whatever ailment might be going on with her. She was also a believer in drinking the stuff every day....I even got on it and when I did it faithfully I am remembering it seemed to help stomach issues, even appetite control....could be worth a try....
Helpful Answer (1)
Report

For whatever it's worth, a good friend of mine who took care of her mom for quite a wile found that washing her legs and other vunlerable areas with diluted apple cider vinegar made a big difference in bedsores. When her mom wound up in a care facility, they wouldn't let her use the vinegar wash on her and the bedsores were much worse.
Helpful Answer (2)
Report

I mentioned this on another pressure sore thread, and at times when ulcers pop up or won't heal with actually minimal to no pressure, the underlying cause is low protein stores, even in someone who is getting enough or more than enough calories.
Helpful Answer (1)
Report

Look up Kennedy Terminal Ulcers. The answer is there.
Helpful Answer (0)
Report

What's happening, JeanetteB. Can I help?
Helpful Answer (0)
Report

Going through the same.... it's awful!
Helpful Answer (1)
Report

Sh*t happens
Helpful Answer (1)
Report

Marialake, a 2013 research study in the International Journal of Nursing Studies found that prevalence of pressure injuries for patients being cared for IN healthcare facilities in OECD countries ranged from 5% to 26%! That's professional caregivers providing evidence-based, best practice care for patients inside facilities! Anecdotally, I've known great nurses who are incredibly skilled and facilities that provide exceptional care and still, patients get bedsores. Even though you've given great care, there are some patient-specific factors that means they are simply inevitable. Don't spend another minute wondering. You're doing well.
Helpful Answer (2)
Report

Maria pick up your self esteem. You are doing a wonderful wonderful job of caregiving your MIL and she is indeed blessed to have your loving care. As others have said, poor caregiving often leads to pressure ulcers but the other side of the coin is that even with the best of care these things do happen especially towards the end of life when the circulation slows down thus depriving the tissues of proper nutrition. Does not matter how good the diet if the nutrients are not able to get to the tissues then it does not help. You mention that MIL has begun to loose significant weight and this again is very common at the end of life.
Lawyers like to stir up people and incite them to taking legal action from which they profit enormously. The worst acussations they can think up the money they make.
Rest easy Maria ignorant people simply do not understand what happens to the body towards the end of life and actually cause extra suffering by insisting on artificial nutrition etc. God Bless you for your care and concern and to everyone else who has or will experience guilty feelings when bad things happen to their loved ones.
Helpful Answer (2)
Report

I can tell you this.... You, yes you, are a wonderful, amazing caregiver! Sometimes things happen no matter how hard we try. Your level of devotion shines through in your writing, you MIL is lucky to have you by her side!
Helpful Answer (2)
Report

My grateful thanks for all the helpful comments.
My hospice bed is actually low air loss and it runs continuously.......for over a year now. My MIL's conditions goes up and down a lot. She has maintained her very large size the whole time she's lived here with me (2 yrs). However in the past 6 weeks she's lost considerable weight. I believe her body is no longer processing the food even though I give her drinks such as rejuv, etc. Yes, hospice told me about Kennedy ulcers and they have been kind and supportive. I am aggressively treating the sore even though I understand that it may never heal. So in my heart - I know that it's not my fault.
But the reason for my comment ..............after going on line I was amazed at the lack of assurance for caregivers who are in my position. Awful accusatory comments about caregivers regarding bedsores and
lawyers everywhere.....................it blew me away. It's sad that serious stigma remains even when no guilt should be assigned.

PS - Of course I understand there is awful caregiving too. Just speaking for good caregivers who should never be grouped with them and who struggle to find validation as this subject can be misinterpreted all over the place.
Helpful Answer (2)
Report

I am glad you have hospice involved, and it might be that the end is nearer than you think. If not, the best you can do is keep it super clean, treat any infection in it, and as free from pressure as possible. You even need to make sure diapers are not too tight and any wound packing is fairly loose. A wound vac can sometimes work on these but it is may be a lot of trouble to maintain and the sore has to be very clean. If malnutrition is not a factor, its the circulation that is no longer enough to sustain intact skin. If this was in a hospital, they would have access to low air loss beds like a Clinitron or similar which is about the only thing that allows for laying on a sore area but still healing it; the alternating air and/or Geomatt or most things you can get at home are good but not enough for this situation. Sorry this is happening to you!
Helpful Answer (1)
Report

Maria,
PS You said that you had hospice care didn't they explain Kennedy Terminal Ulcers to you? They know this quite often happens and should have explained it to you. It would have helped you to understand and deal with it without concern in reference to the care you gave
Helpful Answer (1)
Report

Most hospuce companies usually have a wound care specialist, request that person. I was lifting my mom from wheelchair to her lounge chair and slipped causing my elbow to hit her forearm which caused a skin year. You are right I felt terrible but the hospuce nurses were wonderful in helping mom and also me feel better. I had been transferring her for 5 years many times a day. Sadly, sh*t happens, do not beat yourself up over this. You obviously are taking wonderful care of your MIL, be proud a what you have done. There is a special place for you in heaven.
Helpful Answer (2)
Report

There is a phenomena called KENNEDY TERMINAL ULCERS that occur out of the blue on hospice patients. They can have no breakdown one moment and then within hours a wound will develop out of nowhere even with the best of care. We have to remember that our skin is our largest organ. Just as a hospice patients other organ stop functioning so does the skin. This occurs when the patient is nearing their passing. Usually 48 to 72 hours before pssing. There should be no shame on the care takers part if a patient is turned every 2 hours and kept immaculate clean this can and will happen towards the end. Look up the term KENNEDY TERMINAL ULCERS and ease your mind.
Helpful Answer (2)
Report

Maria..I understand. Mama is totally bedfast, now going on one year and two months and like you I am diligent in changing her, turning her, pillows here, pillows there...doing everything I can to prevent these sores, and so far so good on and about her bottom..BUT, the other day, the aid who bathes her three times a week, found a place on her elbow of all things and it had not broken through and thank God she saw it, but I immediately felt horrific..I almost started crying. I know what you mean about the feeling of shame...I know I am doing everything I can to take care of Mama and everyone, including the nurses and aids have told me I do an excellent job, nonetheless it did not help my awful feelings seeing that....No you are not alone....the aid and nurse both told me that even though the caregiving is excellent, the frailty and the super thin skin, boney areas like elbows, tailbones, etc. are just more prone, no matter how excellent the caregiving...yes, I do understand....take heart. I know I am doing all I can, I'm sure you are as well....but I do understand.....
Helpful Answer (2)
Report

Yes, you do have company -- I bet there are a lot of other people that have the same experience we've had, and perhaps some of those people bear some of the same unearned "shame". Yes, I've seen some of those posts, too, but was smart enough to know that while many pressure sores can be traced to poor caregiving, not all of them can be. The only thing that should matter to you is this: Did you do the best you could, with the resources you had available? If you can honestly answer this in the affirmative, then you have no reason to feel bad or guilty. Pressure sores happen. And since you've already been doing all the right things to try to prevent and then treat them, I think you're doing your job really well! And the fact that you responded to the wounds quickly, and that you are concerned about the job you are going and how that is perceived by others, tells me you are doing it well!
Helpful Answer (2)
Report

Thanks thezookeeper for responding to my post. It helps :)
I've had an alternating air circulating mattress for the past 12 months and hospice nurses are coming four days a week. We do dressing etc together. I also faithfully do the changes myself so we are working hard at it. More than anything I wonder if you all have read the accusatory posts all over the internet regarding bedsores. If so, how did that make you feel? I hope I've got some company in this regard....................
Helpful Answer (1)
Report

It's very easy for a bed-bound person to develop bedsores. Even the best caregiving can't always prevent them. If you haven't done so already, contact a medical rental supply and arrange for a specialized machine that will keep changing the pressure on her bed. We found that this one element was more than important than turning. Wounds on the tailbone tend to take much longer to heal (just the opposite of how quickly they can form in that location). If you don't already have a visiting wound nurse coming in to apply medications and change the wound dressings, you should. Make that every day until the wound starts to scab and heal. This was the second most important element involved in getting those wounds healed and in preventing new ones. My mom's tailbone wound took over 3 months to heal.
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.