Dealing with bed sores - afraid I'm screwing this up.

kyronae

My mom recently was entered into hospice care. We're keeping her at home, but we know we're getting close. She's refusing most food (we can occasionally get her to drink Ensure, but it's hit or miss), and in the last two days she developed bed sores on her bum, right between the cheeks.

We have an in-home caretaker on weekdays, but not in the evenings and not on the weekends. I'm technically not the primary caretaker (my step-dad is), but now that I'm here he's pretty much left everything in my hands. I have more physical strength than him (he's on oxygen and recovering from a couple of surgeries), but not much. Thank God my mom is tiny, because this would be impossible otherwise.

I've had the process explained to me for how to change and wash her, and I'm trying to get used to prepping all the supplies and going through the process, but I still don't really know what I'm doing and I'm so afraid I'm going to mess it up... I know how vital it is to keep her clean and dry and I know how dangerous those open sores can be....and I don't know how to do this better.

I've been cleaning sheets today and trying to make sure she's turning regularly, but I can still smell a pretty strong ammonia odor and I can't move her enough to change the base sheets (nothing seems wet, but that smell is not great). 

I asked my family to have a family meeting tonight, so I can get help then to switch everything and make sure she's set, but that's still 4/5 hours away. I don't want to hurt her thinking I can put something off until then. 

For others who have done this kind of cleaning care...what do I need to keep in mind? How much anxiety is warranted and how much is okay for me to let go until I have extra hands to help?

Basic details - my mom is 62 with early-onset Alzheimers. She was mostly nonverbal (though she's recently become really responsive in the last few days). She's not eating, has lost most of her physical strength. Up until 3 days ago, we would get her dressed for the day every morning and she'd sit on the couch next to my step-dad. Since we found the bedsores, she's been in the hospital bed in our living room and we've been trying to keep her turning and clean, but yesterday she was in urine-soaked diapers for HOURS because the interim caretaker didn't show up when she was supposed to and I didn't know to check. Since then, I've gotten the lesson on how to handle it and I'm trying...but I'm so nervous and overwhelmed. 

jfkoc

    
 The resposibility can be overwhelming. Please call your hospice and have them come out again...

Re the sheets...you want to have enough removable waterproof pads so that you do not get down to the base sheets.

Jo C.

I am so sorry and can understand how upsetting and stressful this must be for you.  Jfkoc is correct; get Hospice out there - they need to do a MUCH better job of managing this. They can do decubitus care and should visit frequently to ensure things are going well and the decub is healing and not worsening. They can also provide an alternating air mattress that will take the presssure off the various body parts to avoid skin breakdown; they can also assist in showing HOW to make the bed and change the bed and diapers with much better ease.  If there are adequate resources, one can also hire an aide for the hours presently not filled, but there is certainly an expense with that.

IF your mother is a candidate for it, there is a device which is excellent - it is the PureWick system which actually keeps the person from urinary incontinence wetness IF the person will not purposely disrupt and remove the device.  It is comfortable and fits comfortably between the labia; rather looks like a sort of soft tampon; (use Google and look it up).  It has a tube that goes from the soft catch device that catches all the urine and carries it by gentle suction up to a container that can be emptied.  NOTE:   It is an awesome device and is now used in all the acute hospitals; rarely any more catheters in those hospital settings.  IF they do not provide such a device (Medicare does pay for it I think), then if life is not expected to continue for a long period of time and if the patient is caused pain and/or great discomfort in being moved constantly to change wet diapers, they can put a foley catheter in to catch the urine. This of course can be an issue for causing bladder infections, so it is a matter of  judgement for patient comfort and safety.  Sometimes the moving to change the bed and diaper over and over and over again can really cause patient discomfort or actual pain.  Of course, if she is incontent of stool, that would have to be handled.

There are also various patient lifts that can be helpful when diaper or bedding changes are needed; it is absolutely up to the Hospice to manage this. You can see these lifts online if you Google them.  Some lift the entire patient off the bed and onto a chair or other surface; others raise the bottom of the body and legs.   If you get no satisfaction in assistance from your assigned RN, try contacting the RN Supervisor to gain more concrete assistance.

Let us know how you are,

J.

mommyandme (m&m)

After a conversation with hospice this week, when we are in a place such as yours I’m going to consider a catheter for my mom.   Has that been discussed? 

I’m so sorry for your struggles. 

kyronae

Thank you both. I had my step-dad call hospice. All they can say is that a nurse will come by at some point tomorrow.

I already stressed to my SD how important it is that we keep her dry and moving, so we'll work with family and neighbors tomorrow, and then get hospice to come in and reassess on Monday.

I'm going to get my SIL (a nurse) to help me change her sheets and make sure she's fully clean and cared for before I leave for the night (I'm usually here from about 9/10am until 7 or 8pm). Unfortunately, I live about an hour and a half away, but I'm only going home for a day and then coming back. I'm trying to be down here about a week at a time and then ducking back for a day to see my partner and my pets and recharge. 

This is so hard. I wouldn't trade being here for anything, but why is it that family so often assumes that, if one person is shouldering the burden, they don't have to? This would be so much easier if it was a community effort.

I'm really grateful for y'all in this forum.

towhee

It might be a good idea to get a video for your reference of your SIL or the hospice nurse changing her and her sheets, as well as what position she needs to be in if she is eating or drinking in the bed. I hope you can get better training so you will feel more comfortable caring for your mother.

sandwichone123

A person that is fully dependent is too much for any one person to manage. A person in that condition needs care at least every two hours around the clock, and it is physically impossible for one person to do that, regardless of the intentions of the caregiver or the size of the patient. Unless she is within days of dying, you need help. Care needs to be provided by shift workers, whether family or paid staff (usually a combination of the two), but no one person can do more than 40-60 hours of these shifts in any week.

BassetHoundAnn

For what it's worth, I found that memory foam was the miracle cure/preventative when I suffered severe pressure ulcers after a surgery. I covered the memory foam pillow and supports with fleecy knit fabric pillow cases so there was more surface area to squish down into than there would have been with percale sheets which keep the surface taut.