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Louise315 Asked January 2022

Anyone else frustrated that their loved one can’t get massage for comfort care through hospice?

My 90 year old dad is bed and wheelchair bound. He also suffers from dementia. His worst part of the day is late afternoon to evening, when he sundowns and suffers from pain in his backside from sitting in his lift chair or wheelchair. He does have pressure sores. I’ve asked the hospice nurse if it’s possible to allow him to get massages every now and then just to relieve him of his muscle pain due to atrophy. She said it’s not possible. He does have a hospital bed with the air mattress that inflates and deflates, and has tried mats and pillows while in his chair. He loves the bed air mattress, the pillows or seat pads not so much. If the goal of hospice care is to keep someone comfortable, it seems like massages would be built into their care. They can pay for morphine but not massages? I wish I knew where to go to help make positive changes for hospice care patients (like this). Chronically ill and dying patients benefit so much from massage as they crave human touch and benefit from the muscle stimulation.

Louise315 Apr 2022
Thank you to everyone who answered here. We eventually found a wonderful massage therapist who has given dad a massage weekly for the last month. Since his hospice program does not do massage, we are paying out of pocket for it ($120 per session). His hospice nurse is trying to get the hospice program to consider getting on board with the idea of offering a massage/music therapy option, which is a wonderful idea -and I hope they seriously consider it.

Myownlife Jan 2022
Does your dad want massages? Or is this you thinking it would be good for him? Where are his pressure sores located? Is it possible that when you visit you could bring some nice thick lotion/cream and do a mini-massage? It could be something your father looks forward to along with your visits.

Maybe when the aide helps with baths, he/she could do a few minutes massage to areas without pressure sores.

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MargaretMcKen Jan 2022
What sort of massage do you think might help him? Obviously not his bottom, with the pressure sores. Some massage really does require considerable strength and expertise, but gentle stroking is something anyone can do. It may not shift the pain in the same way as professional muscle massage, but it may help him to concentrate on something and somewhere different. And it feels nice and loving. Try it with him concentrating on slow breathing.

'Tylenol twice a day' needs a check to see what pain relief he is actually getting. Tylenol can be as little as 500mg of acetaminophen/ paracetamol, or can come with different levels of codeine or other pain killers. Many doctors are now under prescribing painkillers, following all the fuss about fentanyl. I am permitted to take up to 6 x 30 mg of codeine a day (with added paracetamol which does nothing for me and appears to be there to stop addicts from separating the codeine). It needs special permission. I very rarely take that much, take nil if my back is behaving itself, and I’m definitely not addicted. Double check that Dad is getting an effective level of pain killers at the right time of day – and if not, make a fuss.

Grandma1954 Jan 2022
To sp19690
Protecting dying patients from COVID is but 1 thing protecting Volunteers is another priority. Volunteers have the choice to enter facilities or homes and if they do not feel comfortable doing so it is not something that they will be obligated to do. And many of the people doing therapies like massage, Reiki, art, music are volunteers.
And yes you protect dying patients just like you would protect anyone else. Hospice is not going to intentionally try to get someone ill. Anyone that is on Hospice already has medical problems contracting COVID could hasten death and that is not taken lightly.
sp19690 Jan 2022
Nobody is trying to get someone who is already dying intentionally ill but if my loved one wants a massage so their legs don't atrophy and the tightness is causing them discomfort then I am sure going to find someone who is willing to do that to provide comfort. Covid or not. It's called palliative care for a reason and that is palliative care in my book.
AnnReid Jan 2022
This is a WONDERFUL discussion, NOT just for our LOs but most definitely for caregivers themselves too.

I was formally diagnosed with Fibromyalgia several years ago, and spent long periods of time with the pain, loss of sleep, and fatigue that can accompany the condition.

Following my mother’s death, I was able to use some of my extra time to institute some beneficial habits and practices, lost over 100 pounds, and was pretty much free of Fibro flares for a few years, while moving, being a grandma, and assuming the care responsibilities of my present LO IN Care.

Despite taking every precaution, I became infected with COVID, and have once again experienced a Covid flare within the last 4-5 months.

Through a relative, I’ve been connected to a fine Licensed Massage Therapist, and following 6 visits, I’m experiencing the benefits of improved sleep, reduced pain in my arms, hands, and fingers, and improved posture and breathing.

”Our” residential care center is currently closed to visitors, and it has been 2 weeks since I’ve been there. Again, COVID Ruins Everything It Touches.

Can our LOs benefit from massage? I certainly think so, but at this point, where I live, facilities AND family care providers are stretched so thin that even humane basics of care can be hard to access.

If she lives through this latest viral siege, I’ll discuss this with my CMT.

sp19690 Jan 2022
You could just hire a massage therapist to come to the house. Or you could give them a massage I suppose. Though how would a person with dementia respond to someone touching them?

BarbBrooklyn Jan 2022
Louise, you CAN get PT on Hospice, to maintain strength, prevent contractures.

https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice

Grandma1954 Jan 2022
The Hospice I had for my Husband offered and may still offer massage. They also offered Reiki Therapy. But many "therapies" have been cut due to COVID not just massage, Reiki, Art and music.
If he has pressure sores that may be the reason that they do not want a massage therapist involved. Using any oils may make the sores worse or lead to infection. And the pressure from the massage might also be problematic.
You can ask if the massage can be just upper torso.
And there is nothing that would stop you from gently rubbing his arms, back and neck.
When he is bathed I am sure the CNA also gently rubs his skin so he is getting touched.
My question is...if he is in pain are they doing anything to alleviate the pain?
sp19690 Jan 2022
Ironic that they want to stop people from coming in to help people on hospice. Those on hospice are dying so I don't get what they are protecting them from exactly.
funkygrandma59 Jan 2022
Our local hospice offered a massage therapist to come to our home and we agreed to let her. My husband enjoyed it very much as he was completely bedridden. However as soon as Covid showed up her services were put on hold, and sadly my husband died later that year.
So apparently some hospices do offer that service. You may just have to call around to find out which if any in your area do.
Good luck with that.
Louise315 Jan 2022
Thank you. In fact, I had read that and this was the reason I asked our current hospice service about it. COVID has definitely made things harder. BTW, I am very sorry for your loss. Glad that he was able to enjoy this small comfort for a while.
cwillie Jan 2022
It may be hard to find someone willing to provide in house services who is also willing to work with the chronically ill and dying. When my mom was a nursing home resident I thought it would be helpful if the facility could provide a list of willing alternative health services, even if they didn't provide those services directly - nobody else seemed to think this was worth pursuing.
Louise315 Jan 2022
If those you were talking to were the admins and caregivers, I can definitely understand why they didn’t see it as a high priority. Caregiving is so understaffed everywhere. We are blessed to have enough cash to keep dad in a fairly nice facility. They STILL have a super high turnover rate. Glad you tried, though. Human touch is such a need for the elderly and bedridden.
BarbBrooklyn Jan 2022
Louise, is it not possible because they don't have a massage therapist available, or because your father's pressure sores are a contraindication?

If he's developing contractures, ask for a PT to come in for stretching. Is he getting meds for the sundowning and pain?
Louise315 Jan 2022
PT is not covered by hospice, and dad’s insurance needs evidence of “progress” to cover the cost. He gets Tylenol twice a day for now.

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