My 91-yr old mom has lived in LTC since falling and breaking bones 4 years ago. I am her main family caregiver and spend time with her most days of the week, especially the past couple months as her health has been declining. She has SEVERE kyphosis/curvature of the spine that restricts her lung capacity, and she is on oxygen 24/7. Within the past 3-4 months, she has lost her ability to walk. She lives and sleeps in her lift recliner and uses the EZ stand to go to the bathroom (as opposed to full hoyer lift). I fear the day when staff will want to put her in her bed -- because of her spine, she cannot lie flat. Even when reclined in her chair, her head leans forward almost resting on her chest. Also in last 3-4 months, she has had vivid dementia episodes that she believes are real, though she lives in reality most of the time. We have talked about hospice on & off for a while, but mom doesn't want to do it because she thinks it's all about the drugs and she has always declined pain meds (not sure how), except for an occasional dose of morphine when things are really bad. Nursing home is REALLY pushing for hospice for extra help and drugs to "help" mom. Mom doesn't want the drugs. In fact, I'm sitting here here with mom who is not in any obvious distress but had an episode of confusion this morning. I'm game for hospice if it can help, but this latest conversation came after a nurse took offense at an incident that was blown WAY out of proportion when mom said she walked away when mom needed her (that's a whole separate, frustrating issue). Anyway -- benefit of hospice if a person doesn't want the drugs?
Hospice was suggested by her doc as “another set of eyes” on her.
She receives a shower twice a week from the SWEETEST aide. This aide is compassionate and kind.
The hospice nurse visits twice a week. This nurse is a fierce advocate for my mother. I call with an issue, and the nurse comes within 24 hours, at the longest.
Mom receives these services through Medicare. That includes her hospital bed, depends, bed pads, barrier cream, wet wipes, etc.
The hospice social worker comes every 2 weeks. A volunteer calls me weekly. The chaplain visits her once a week. He was even the first to notice that my mother had taken a fall, and got her help.
These people support my mother, and have developed a relationship with her, as well as with me. They are angels, sent by God, I always say.
You can interview different hospice companies, if you’d like.
Best wishes to you!
When mom is actively dying, hospice will come in daily to assess her needs; after death, hospice comes in to dress her body and to arrange for removal to the funeral home, etc. They handle everything FOR you. They also stay in close contact with the family for assistance with bereavement etc.
Best of luck!
as you can see they have been invaluable. I’ve had a CNA twice a week, an RN weekly, the minister weekly, a social worker monthly and a visiting volunteer weekly. All more eyes, yes she lives in a community, but with staff shortages and turn overs etc , so helpful and giving me peace of mind and guidance…
My husband was under hospice care in our home for the last 22 months of his life and there were times when hospice recommended different drugs for him and if I didn't feel they were necessary I just told them no thank you, and they were ok with that. So don't let that deter you from getting mom under hospice care.
They will supply any and all supplies, equipment and medications, along with a nurse once a week to start and aides a couple times a week to bathe her all covered 100% under moms Medicare. She will also have access to volunteers coming to visit her and a chaplain. And you will have access to a social worker as well.
So it's really a win win for all involved, plus having extra sets of eyes on her too.
Wishing you and your mom the best.
As soon as she was admitted, we received the "comfort pack" - which is an assortment of drugs to make the patient more comfortable. Yes, it contains Ativan and Morphine; it also contained Tylenol (both oral and suppositories), stool softener, and a few other things I can't remember (you can Google "hospice comfort pack" and it will give you a list). The box sat in my mom's refrigerator, unopened, until she was actively dying. At NO TIME did hospice "force" my mom to take any drugs or try to convince me to give them to mom prematurely. The reason for the comfort pack on "standby" so to speak, was in the event she needed them at a time when the pharmacy wasn't open, we would already have them on hand.
Hospice is a very personal decision. As far as any benefit "besides the drugs" I can tell you that the nurses were another set of eyes on mom, and another set of ears to listen to any of my complaints or concerns. They also encouraged mom to do what she felt like doing - or NOT doing, as the case was - such as not eating when she wasn't hungry or trying not to sleep during the day.
If mom is in an NH where there seems to be a little friction between you/mom and the caregivers, I think an extra set of hands to help mom might be a good idea. For example, I can't imagine a hospice nurse "forcing" a patient to lie down in bed if it puts that patient in extreme pain, and perhaps as far as the NH personnel, the opinion of another medical professional ("hey, maybe lying her down isn't a great idea because it causes her serious pain") might go further than that of a family member.
At the very least, talk to mom's doctor about a hospice evaluation. You and mom might have a different opinion about hospice once you speak to hospice personnel and see what it is they have to offer mom and you. In my experience with hospice, the drugs played a very small, albeit necessary, part of the care they gave mom. You're not obliged to accept their services if you're not ready, and at least you will have an idea of what they can do should the day come that mom has need of their assistance.
My condolences on the loss of your mom.
I'm sorry for the loss of your mom.
My condolences on the loss of your mom.
Is there a reason to believe that your Mom is at need of end of life care now?