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My mother is in a ALF and on hospice. I also utilize a few hours of private care each day. But, for the 4th of July weekend, hospice is on holiday as well as the private care. I must rely on understaffed ALF. I used to love holidays. Now I dread every minute. They all say there is someone on call but something must happen before I make the call. An hallucination, a fall, or a messy undergarment are all possibilities. Every big holiday seems to be a setback for her. I pray that all will be well. How do you get through the holidays?

Cetude- Wow! You present a rather a morose description of hospice care, and certainly your description of AD death is absurd. Hospice doesn't "let your mom die", dying happens naturally. Hospice doesn't provide any curative care, nor do they shorten one's life. Why do you detail the agony of death and then tell us that your mother never experienced this? I, personally, was disgusted by your depiction of death. My wife's experience with hospice was one of compassionate care, comfort and companionship.
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Riley2166 Jul 8, 2021
I hate to say this but when my husband was dying of pancreatic cancer, I found hospice did almost nothing - I wondered why. So it all fell on me. I think some people have had bad experiences with hospice - perhaps it is not a wonderful as everyone thinks. I can tell only by what I saw this one time - I was NOT impressed. I guess on holidays you have to hire special people ahead of time to be there who do not mind working holidays. I don't know their policies but look into this for the future.
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My 97 yr old Dad is on Hospice being cared for 24 7 in his own home.
Even tho he has someone with him 24 7, the Caregivers don't really do much except what they have to like take him to poop or feed him.
No interaction, not much talking at all.

Just the TV blaring.

He has dementia but he enjoys having Company.

Rather it's a Holiday or not,, One day is the same as any other, just as boring as the next unless he gets a visit by a family member.

Visit as much as you can..

If you can't visit on a Holiday, make sure you call or send something which will make you feel better.

I've installed cameras at my Dad's so I can watch how he's cared for.

You can't make Caregivers be friendly but I can certainly watch any time 24 7 to make sure my Dad is being cared for and I know it's better than him being in a Care facility.

We just need to do the best we can, that's all we can do.

Prayers
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Hospice will basically let your mom die and often very, very slowly. They say it is humane but morphine does not always numb the pain--it just makes a person hallucinate -- often very terrifying hallucinations. It's the truth. At a nursing home or ALF at least you don't have to see it. Euthanasia is not legal so hospice lets their patients slowly--SLOWLY--die of dehydration which can take weeks (literally). The person shrivels up, mouth and tongue bleeds, eyes bleed..due to lack of fluids. The kidneys fail and death is slow. All the "evidence" say this is humane, but it is easy to say the writers of these articles are not the ones dying slowly of dehydration. I would not want to die like this, and I did not let mom die this way either. I got a feeding tube put in for comfort--it's an overnight hospitalization and it only takes a few minutes for the doctor to insert it.

The skin of the frail elderly is no different than a baby's skin. The diapers has to be changed quickly and frequently. Hospice will not do this.

I took care of my mom 100% of the time so she was comfortable and needs met. Mom died with perfect skin. I ended up having to get a feeding tube put in so she would not have to die of dehydration, which can take two week. Mom never bothered it and that feeding tube took a LOT of work to keep clean and well cared for. She died peacefully and never needed to be on narcotics or psychotropics.
But I also realize not everybody can do this.
Life sucks.
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Riley2166 Jul 8, 2021
What exactly does hospice do for patients? How often? What cost? What should one expect from them? If they don't do certain things, then who is supposed to do them if you are under hospice care? Can someone please explain more about hospice and how it works.
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Imho, you may need to change hospice companies.
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Jpapke Jul 8, 2021
I agree. Change! A not for profit hospice would be best. People have very misguided opinions of hospice care as written in another reply here. My mom was treated well and with total respect. She was comfortable. People were amazing.
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Thank you to all who have replied. This is a heads up to all who are new to hospice as I was. Check in advance to see if your hospice provider will take off gov't holidays. I was caught by surprise. Private care is an option but my pockets are not bottomless. Best wishes to all of you who are going through this most stressful time.
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Moving mom to Memory Care or Skilled Nursing sounds like a better option. Typically in Skilled Nursing and MC there would always be a full staff.
Private hire through an agency should work when when you need/want them. Yes it might cost more since the caregiver would be making "holiday pay" but someone is always willing to work a holiday just because of that.
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Msgt19 Jul 9, 2021
I agree. You have round the clock care n they do it all. Most people can't afford home care. Its twice as much as putting our loved one with skilled nursing. If I did home care my mother would be broke in a year. In skilled nursing she can be taken care for almost three years before having to switch to medicaid.
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Absence for medical staff just because its a holiday weekend - why? Caring is a 365 day a year job, it cannot be picked up and put down. I'm sorry you have to deal with such unprofessional organisations.
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Personally I am surprised she is still allowed to stay in an ALF at this point. She seems past that and should be either transferred to stay in LTC where there is more staff to care for her needs or if she's closer to death, then she could go to a hospice residence. Hospice can still make regular visits even if she is in LTC which is what we had for my dad. She needs more eyes on her.
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There are different kinds of hospices. But if they are licensed and in the USA, they MUST have care full-time, no matter if there is a holiday.

Does this facility get paid by insurance? Do they have a medical team?

My best friend's spouse was in hospital over the last week, and there was care on July 4th and July 5th, which were both holidays. It was a bit sparse, and some nurses had to work 18 hour shifts (because some will call in "sick" on holidays and there needs to be coverage).

Something seems very fishy. If you are not local to your mother, she may need a local advocate. If you are local, either get involved or let it go. If the private care will not cover on holidays, find different private care.

A friend of mine found out her family was using one person for 7 day/week, 24 hour per day care of her dad. But she was not local, so there was nothing she could do. If you only have one option - the ALF hospice and the private care your mother is using - then you only have one option. But I'm not sure why any of the fears you have are pertinent - isn't hospice temporary so a "messy undergarment" isn't as bad for someone with 6 months left vs. years with worsening pressure sores?
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Fowlair Jul 7, 2021
I must take issue with the soiled undergarment. It doesn't matter how much time a person has left to live. Lying in a soiled undergarment is degrading, unsanitary and can cause a UTI. Babies get changed as soon as they are soiled, and the elderly should be no different.
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Get another hospice company. There is absolutely no excuse for them to take off a holiday. My mother was seen by the hospice nurse on both the 4th and the 5th this week.
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NeedHelpWithMom Jul 7, 2021
Best solution! There are many hospice organizations to choose from. Why would hospice take days off? That’s crazy to place patients and families in a bind.

The hospice organizations that we had for my brother and my mom, were never off duty.
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When my father was on hospice in his ALF, messy briefs were ALL handled by the staff at the ALF, understaffed or not. Same with meals and anything else he needed, including medication for anxiety or pain, etc. By law, a nurse MUST be on staff at all times in all Assisted Living Facilities to be able to dole out narcotics and other duties.

If your mother's ALF is telling you that YOU have to change a soiled brief or pick her up from a fall, etc, they're way out of line and you need to take the matter up with the Executive Director immediately.

The holidays should be no different than any other day in managed care. If your mother is having a hallucination, a nurse or QMAP should come in to give her a dose of medication prescribed by hospice. In fact, she should be scheduled for regular dosing if hallucinations are an ongoing problem.

Let the ED know, in no uncertain terms, that you are not going to do any hands-on care for your mother in her fragile condition and expect the staff to do it! That's what you are paying for.

A couple of years ago, we had a hail storm here which soaked my mother's carpet in her apartment in the ALF. The ED told me to take her to a HOTEL for a couple of nights while they set up fans to dry the carpet out. I was flabbergasted. I said absolutely not, and to figure out another solution because there was no way on earth I was going to be changing Depends and dealing with vertigo etc in a HOTEL room with a 92 year old woman with dementia. So lo and behold, he put her up in a different apartment in the ALF and had the staff move her bed, recliner and tv set into the new place! 😁

Speak up! Otherwise these EDs will try to walk all over you!

Good luck!
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Reply to lealonnie1
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Our hospice takes every gov't holiday off--they were off last Monday, July 5!
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NeedHelpWithMom Jul 7, 2021
That’s crazy. I am sorry to hear that. This places patients and their families using their services in a bind.
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Hospice on holiday? That’s so odd. Health care workers work seven days a week, morning, noon and night, including holidays!

I guess if you don’t wish to do it, so you can participate in holiday gatherings or simply relax, then hire someone to be there.
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My husband was under hospice care for 22 months in our home, and they never took off holidays. I have never heard of such a thing!!! There may have been a different CNA that came to bathe him if his day fell on a holiday as his regular may have requested off, but there was always someone available. You may have to see if there is a different hospice agency you can switch moms care to, as something just doesn't sound right about them "being on holiday." Best wishes.
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WVson1 Jul 4, 2021
It doesn't sound right to me either but hospice says "We will be off on Monday. We will resume on Tuesday after the 4th". "There is someone on call if necessary". Took me by surprise actually.
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If you have the resources, perhaps you could consider hiring a private care giver for that time. I recognize that is a huge financial commitment so it may not be possible.
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