Here to vent. I feel inadequate.

jojobaggins42

Hi everyone,

I've posted once before and feel the need to vent again. 

Mom is 76 and in addition to being stage 4ish Alzheimer's and Vascular Dementia, she has pancreatic cancer and is on home hospice. She has been living with my husband and me since March this year. I am her primary caregiver.

The hospice nurse and I discovered yesterday that mom has a stage 2 bedsore on each butt cheek (the intragluteal region). Mirror image bedsores, basically. She's been telling me for a couple weeks that her butthole hurts. She has been constipated and is taking morphine for cancer pain, so a hemorrhoid is what we thought was giving her pain. Opioid induced constipation is very common and awful to deal with if it gets bad. Mom's extremely modest and wouldn't agree to us looking at it and we didn't push hard to see it, which was a mistake. 

I gave her tucks pads and got hemorrhoid cream for her supposed hemorrhoid. Still she had pain when she sat a certain way. 

She is still fully mobile and walks around the house daily and sits at the table to eat, etc. She gets up and walks to the bathroom when she needs to. She wants to have as much independence while living with us as possible. I think the cause of the bedsores was from our cat who adores my mom and tries to lay on her lap as often as possible. What cat lover would argue with that? But then mom would sit in the same position for a long time so she wouldn't disturb the cat. Plus the cat is chonky and weighs probably another 15 pounds. 

So mom didn't understand that the pain from the bedsores was not from her butthole, it is from bedsores. Still doesn't really understand and forgets immediately. I drew a diagram and taped it to the wall by her toilet paper roll to remind her. I know she will end up needing with them and making them harder to heal.

Now her big fear is worse. Since we didn't catch the bed sores sooner, she has to drop her drawers for me to put cream on them 2-3 times per day in the hopes they will heal. 

I'm having trouble finding a position for her to lay in that will take the pressure off the sores that she will continue to lay in. (She sleeps in a recliner because of arthritis.) She usually goes back to sit-lying in the way that gave her the sores to begin with.

It's also a battle to try to get her to bathe. She is weak and tired from the cancer already, but she doesn't want me to bring in a home health aide from hospice or elsewhere. She'll backpeddle and say she wants me to help her. But when the time comes, she's too tired and doesn't want it and refuses. I believe her.  Cancer causes exhausting fatigue and pain. But she has to be cleaned. Her skin is fragile and I'm more worried now about skin breakdowns elsewhere. She's just asking for an infection.

I think it's probably time to have hospice deliver the rental hospital bed so she could at least get bed baths in it from an aide if nothing else. But she probably won't stay in it.

I am leaning toward just making her do things she doesn't want and hoping she forgets about it later. But it's tricky because her mind can still latch on to certain memories and exaggerate them. 

I'm looking at the title of this post and thinking "no one could feel completely adequate in this position." Because it's impossible!! 

M1

Sounds like you're doing the best you can Jojo.  I would definitely go for the hospital bed, and talk to Hospice about a gel foam overlay and/or a doughnut, or other things that can take the pressure off her backside.  There have been several threads lately about bedsores and terminal illness, but if she's still mobile you may not be quite there yet.  

You may be surprised, she may actually like the hospital bed for its adjustability.  

MsReliable

You are doing an admirable job of things in one of the most difficult situations a daughter can face.

Venting is good. And so is realizing that anything you do is a major contribution, and doing everything perfectly is impossible. Give yourself credit -.you caught Mom's sores before they became hugely infected and despite her resistance. Good for you!

Re getting in home health aides and a bed  - yes, do it. The aides are as much for you (time to breathe without a weight on your chest) as for her, and BOTH reasons are valid. A professional aide, who has helped other patients, will see things you don't. They can help put her behaviors in context for you, so you can respond appropriately. And a bed designed for someone in her condition will make more than just bathing easier.

Your care for your Mom is beautiful and generous. And hard, frustrating, and emotionally draining. Vent anytime.

NizhoniGrrl

When my brother was under hospice care, he resisted help with bathing. Hospice sent someone every 3 days to help him bathe. The first time he only allowed the aide to shave his face and scraggly head. The second time, they helped him take an actual shower (he also had a peritoneal cancer and was vomiting a lot). The last few times it was a sponge bath. Have them come to help, even if she only initially allows something simple, like washing her feet or hair. She needs to get used to it. Tell her a sponge bath is like a spa treatment, you could even play that spa music and get some nice smelling lotion they can rub on her skin after washing. Hospice could definitely help with this. It's worth a try and I encourage you to not give up. It also gives you a break while they are tending to her.

King Boo

Have the hospice nurse hook you up with a Wound Care Center or nurse.  Being on hospice does not mean there is no medical treatment.

Bedsores go from bad to worse very quickly.  You don't want it to get down to the muscle tissue or bone, very painful.  

mommyandme (m&m)

I have my mom sitting on a nursing pillow.  Basically it’s a gigantic travel neck pillow, U shaped cushion.  We tried many coccyx pads/pillows etc… she would get raw where her incontinence pad sat on her bum along with chronic back pain.  So this pillow keeps her off of her coccyx along with the hole that keeps her off the rest of her crotch.   It’s really helped us for over a year and she too basically sits in her recliner all day.   Because the pillow is kind of big it takes a bit to get her positioned up on it but it’s worth it . 

Since we are looking at the hospital bed scenario soon, I worry more about bedsores with that.  Will just have to reposition her often.  

Not sure if a different sitting option could help your ma, my two cents for a maybe. 

Good luck! 

jojobaggins42

I have tears in my eyes reading your kind messages. Thank you so much to everyone who wrote responses. They are just what I needed. 

The hospice nurse is coming again tomorrow and I plan to have her order the hospital bed. When my dad was dying of a different cancer last year in December, his hospice-provided hospital bed had a motor that would periodically inflate and deflate the mattress to help prevent bedsores. I like the suggestion of a gel topper.

The nurse put in an order for the aides to start coming next week.

I currently have mom positioned comfortably on her back on a couch with a foam mattress topper doubled over, pillows under her head and each elbow, and a wedge cushion under her lower legs to hold them up with her knees bent. It's the only position I've been able to find that keeps pressure off the sores. She put on her eye mask and went to sleep listening to her Catholic Church songs she likes and a look of relief on her face. 

Space within

JoJo,

 You are doing great.  My LO slept in a recliner for months before it was, finally, deemed necessary for her to have a hospital/ medical bed.  I found it so very challenging to accept she was sleeping in a recliner, thoughts of how her body positions were limited from opening up and fully relaxing.  She lost her ability to walk, months before a hospital bed was granted. This probably was our fault.(she was in a MC ) 

You are so loving and brave to support your mom through this journey. The uncomfortable feeling of wanting to free her from all the pain is tough to deal with.  I found it difficult to realize. at times- the most(and best) I could do to support my LO - was just be there with her. 

When a LO is suffering or in pain- we wish to exhibit a superhero power to rid them of ALL pain. ya know?  Then there is a realization, we will all go through times of pain, it's part of being alive... 

    You are doing all you can- that is awesome.   It's okay to feel inadequate, but yeah - let that story pass on by.  You are one of your mom's angels, as she is yours.   

Iris L.

To examine the bedsores, you can have your mom lie on her side with the upper knee bent toward the chest.  This will expose the area more.

Iris