Hi, I have read many experiences here that family has gone through for a loved one. The sad part is the person with dementia may not be able to tell you how much pain there in. I can only pray that Medicare Advantage and or Medicaid (if I have to go that direction) will provide good caregiving services or hospice care. But its 2023, and just to get someone to call me to talk about services or even to start PT again for my mother is ridiculous. I have called in to get a senior companion; no response yet. I understand that health care givers are under paid and work very long hours; so fewer people want the jobs and the ones still working this challenging field are overwhelmed. I personally am for a pretty little pill invention that would put me to sleep permanently when I get older and cannot do anything for myself anymore. I believe in leaving the decision to the person dying and going through the pain or long drawn illness to end it, or for Guardian/PA to decide for them. I would have the biggest party with whoever is still alive that I know and could attend and then I'd be ready for my spirit to fly. I would not want to put my life in God's hands; I want to decide when its time. I love my mother dearly, but I hope she passes in her sleep while dreaming of herself in some faraway place with friends and loved ones. I've seen enough already with two brothers passing; one at age 30 and the other at 42. It's really sad to see what health care givers get paid with experience, in Texas. I make twice as much as a food server. What a terrible shame what we pay them!
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What hospice does, and I'm grateful:
prescribes the pain medicines required at end of life that regular doctors will not
helps you find facilities and aides
ours mediates problems with the assisted living facility
provides equipment - hospital bed, wheelchair, oxygen, etc.

What hospice does not do:
Take physical care of your dying family member. You are likely to lose your job and your health providing 24 hour care in your home, which hospice really pushes. They may help you locate help or a living facility, but Medicare won't pay for the daily physical care or the facility. You are on your own after they drop off their stuff (other than advice over the phone), and it is going to get ugly. You are going to be handling urine and excrement every couple of hours, be forced to learn how to use catheters, suppositories, and injections, and, when you are about to drop, you will need to do the laundry for soiled bedding and clothing. You will suffer permanent back injury from lifting your loved one. Everyone who wants to die at home cared for by family should have savings or long-term care insurance to pay for home health aides, unless you are good with almost killing your family members with your care requirements. Hospice does NOT provide any care work. At all.

I highly recommend that everyone opt for assisted living (if they can provide the extra care) or a nursing home plus hospice care close to the end. My aunt was at a residential hospice for her last three weeks, which was the best solution ever, but the for-profit nature of modern hospice has closed most of them. My mom is currently in assisted living with hospice. I could not provide the physical care she needs at home.

It's depressing that you have to have money to die well, even with hospice. Much more of the taxpayer money paid into hospice must be devoted to physical care of the dying. We need legislative reform.
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Thank you for sharing your story
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"We all have regrets, but I can't go back "
What a great line. I think I'm going to make that my new mantra.
Thank you for the article, Carol.
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Hospice in my mom’s nursing home was NOT what they said they would be...
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Sorry but my husband still had his vitals and was responsive ..Then the hospice got involved and put him on morphine .Then he layed in a hospital bed 9 days and literally starved to death..And all the hospice people did was talk about his dying..Comeon...How dare they be so jolly about him in the hospital room with the nurses..comeon..How dare they...Who desides when its the individuals time to die.The hospice wanted money and my husband was just another dollar...Sutter solano vallejo..Awful...
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My MIL had been on hospice, at home since Oct. She just passed on Saturday and the hospice people were wonderful. They communicated with our family well thru the whole process and made things easier for my FIL. She was never in pain, was able to be at home the whole time. Hospice people are angels.
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Reba's experience with hospice is completely different than mine. Unfortunately, not all hospices are the same. I opt for non-profit over for-profit if the choice is available, though of course there are good for-profit hospices and likely poor non-profit ones.

Most reports of hospice care are full of gratitude, but some people do have a negative experience.

The other example here is where hospice takes away drugs that keep people alive. By midsummer the new healthcare law will have put into effect a trial program where Medicare will pay for both types of care at the same time - palliative (comfort) care for those near death, yet people can stay on the drugs while they are looking for a cure. This choice has not been available in the past, though some insurances offered it at a price.

Hospice is meant for those who are in the death process, so continuing with drugs that keep people alive is kind of counter-intuitive, but it's what some people want, so I'm glad that choice will be available soon through Medicare.

However we look at it, it's tough to see a loved one die. We make personal choices and it's best to do so in writing while we are well in the form of a health directive. I have my request for hospice care front and center so my kids will know what I want.

My heart goes out to all of you having to make these decisions.
Carol
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I wish we siblings would have known Mom, who was in a nursing home, could have used Hospice. Mom spent four hours dying in pain from congestive heart failure. We pleaded for pain medication and relaxing meds., but her doctor needed to sign the prescription and the nurse were unable to contact him. My mother was an Angel and did not deserve to have even one ounce of pain. Also, I understand the laws for pain meds restrict easy access and requires a protocol of events. If a physician would have been on staff, it would have taken less time. However, by the time the doctor was called and the medication arrived from the pharmacy, Mom had endured pain with minutes to spare before she passed.
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Also when I checked with them they said they would take all of Ed's medication away. The hell they will. He has high blood pressure and he could have a stroke or heart attack if they did that. I will never take him there.
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My friend had hospice come to her home. When they walk in they said they would not let her go past 9:30. They kept giving shots until she was gone. Sound to me like the put them to sleep like a dog.
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sorry.is there not a number or name on the paper?
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I wasn't asking you personally dear, I was merely posting the question to the forum. I'll start my own thread.
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i have no idea??
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Can someone tell me who my mom ended up with a letter from Hospice. That's all I wanna know.
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thank you for the responses. i just figured out that i had them. one step at a time & it will all work out.
peace to all
kim
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I'm sure there is someone out there who can give me info on Hospice.
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I have just come from my moms house. She got a letter from Hospice. Now I'm curious, she kept asking me to read it and I kept saying no because it was mixed in with a lot of paperwork and I didn't want to disturb it. I'll be ther 2morrow and will take a look at it. But I do have a question about this.

My mom is 90, she doesn't have cancer which is mostly associated with hospice, (or atleast I thought) so I'd like to know if possibly someone referred her, or someone phoned to have them contact her. The caregiver said they probably sent it due to her age, I don't know. But mom asked me if hospice deals with people who are dying. I said I believe they serve many purposes.

Can someone answer this question for me, how did they get in touch with my mom and has this ever happened to anyone else, hospice contacting you before you contacting them?
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I have been a hospice volunteer. It has been rewarding. Some family members don't want their loved ones to die alone, or there is no one, so when the time draws near some groups have volunteers rotate shifts to sit with the patients. I did this once, and it so happened she passed while I was there. It was an overall good experience and I would do it again. kimisme should look into volunteering or job shadowing if she feels call into this work.
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Hospices have volunteers and hire people, so it could be a paying job. To be hired, you'd need some training. But it's a rewarding field for many.

Carol
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There are a great many Hospice groups across the continent. They run (in Canada) on 30% taxpayer dollars, and depend upon donations. Volunteers are given mileage in return for their time and energy. There are various training programs, peculiar to each district or region. For example: http://www.nhpco.org/

All health care practitioners SHOULD be trained in end-of-life and geriatric care, but many are not required to have these specific qualifications.
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i have been thinking that i would like to help people cross over. to give comfort & help them pass peacefully.
could this be a job.
i feel it would be very fullfilling to do this.
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Thanks, Jen.

Fighting for pain relief is hard. I had to fight to get the doctor to put my dad on hospice care, even though the nursing home people knew he should be. The doctor said he slept, therefore he wasn't in pain! Nonsense. It was obvious that he was in pain.

As soon as he was under hospice care (with the help of a very tenacious nurse), he relaxed and was able to receive the love offered. His pain was abated. But it was a long fight.

We all have regrets. I regret I didn't touch more than I did. I had so much to "do" with so many people needing me. I should have slowed down and touched more. But I can't go back.

We can both share with others our triumphs and regrets. That's how we move forward.
Carol
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Great article, Carol. This is a huge issue.

I know that my father was in pain. In his case he sang, LOUDLY, when he was experiencing it. I had to fight long and hard, but fight I did - for more pain relief. I wish I had fought harder and sooner. My deepest regret.

I did figure out how to work through the Ontario health care system. It was not easy.
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