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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?

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I don't believe I've ever heard of hospice without drugs. The main point of hospice is relieving pain & making the patient comfortable, so if she does not want the drugs, she won't be put into hospice.
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HappyMeals Apr 2022
Thanks for your perspective!
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The main focus of hospice is NOT 'drugs'; in fact, it is to come visit the patient, help with showers/bed baths, have the chaplain come by to visit, same with the social worker, bring a hospital bed for comfort and ease of staff helping mom in/out of bed and with brief changes, to provide & pay for all supplies such as incontinence briefs/pads/lotions/ointments/barrier creams, etc., all supplies required for when mom becomes bedbound at end of life to keep her from getting bedsores (waffle boots for example to prevent bedsores on heels of feet), all DME medical equipment like high backed wheelchair if one becomes necessary due to mom's curvature of the spine issue, etc. Also, you say mom does use morphine at times, so that is covered by hospice, along with ALL other hospice issued meds which she WILL likely need at SOME point, but not now. Furthermore, hospice is not in business to 'force' drugs on anyone; they will confer with YOU the POA before administering anything, and you'll be in agreement before any meds are given. So hospice provides a HUGE extra layer of support for the SNF, the patient AND the family, and is not 'just' there to dole out drugs, not by a longshot.

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!
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HappyMeals Apr 2022
SO helpful. Thank you!
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Hospice is comfort care. If Mom does not what to take a drug she can't be made to. Morphine is used for pain and breathing. My Mom was in a NH on Hospice. There was no need for drugs. She died from her Dementia even though her death certificate says Heartfailure.
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HappyMeals Apr 2022
Thanks for your reply. Helpful to hear your experience of hospice without drugs.
I'm sorry for the loss of your mom.
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My mom was admitted in hospice 8 weeks before she passed away.

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.
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HappyMeals Apr 2022
Very, very helpful reply! Thank you. She was approved for hospice a while back but has chosen not to because her perception is it's all about drugs. This will be useful information to share with her.
My condolences on the loss of your mom.
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Slightly off topic from hospice, but my mother had very compromised lung capacity due to a combination of having been a long time smoker and also osteoporosis which led to compression fractures and kyphosis. She was on oxygen 24/7 for the last several months of her life, and she, like your mother, had episodes of confusion which were likely due to lack of enough oxygen. These epoisodes were fortunately short-lived, generally under an hour, and she was perfectly lucid most of the time.
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HappyMeals Apr 2022
Thank you for this! There have been a couple episodes of very extreme delusions that I was able to trace back to her somehow taking off her nasal cannula. Lately, she's had some other delusions but I haven't noticed a connection to her oxygen situation. Yesterday she was convinced she has "bad air" coming in from somewhere, flowing up from the bottom of her body to the top.
My condolences on the loss of your mom.
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Hospice is end of life care. It is not meant to act as a "helper" for caregivers.
Is there a reason to believe that your Mom is at need of end of life care now?
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HappyMeals Apr 2022
Thanks for your reply. My mom has gotten increasingly weaker, is developing more edema (she has CHF), finds it harder to breathe (even with oxygen), kidney failure, doc says her heart is not pumping as well, appetite is not great and says she doesn't like to eat but is forcing herself. She's been having delusions on and off for a while. A couple months ago her care provider said 6 months to a year based on her condition.
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Hospice can provide extra people and equipment to help take care of your mother's needs which of course frees up the nursing home staff and is no doubt one reason they are keen for you to enroll. I've read a lot of post from people about their hospice experiences since I joined the forum and one thing I have learned is that the level of care received, the competence of the hospice staff and their willingness to work with and take direction from the patient and/or their substitute decision maker can be entirely different from one hospice provider to another. I'd want to keep a very sharp eye on anyone who has stated their belief in the need to push drugs on someone that has clearly stated no, there will be time enough for a reexamination of that choice when she is actively dying.
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HappyMeals Apr 2022
Very helpful perspective, thanks. I think she's open to drugs if she knows she's actively dying, but that's a good thing for me to confirm with her while she can still make decisions.
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Hospice was invaluable to me helping my dad. And that includes the drugs. Hospice is often maligned for “drugging people” but I saw the comfort the meds brought my dad and wouldn’t have done it differently. As your mom is in a NH, my only caution would be if the NH staff uses hospice as a means to help your mom less. This happened with my mom, hospice was advised and it quickly had the effect of the NH staff “waiting on hospice” to do things for her. We actually stopped the service and her good care immediately returned
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HappyMeals Apr 2022
Very helpful! If we go with hospice, it's good to be aware and make sure NH staff doesn't "wait on hospice" to provide care.
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My mother (who is NOT at the end of her life) receives palliative care from Hospice.

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!
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HappyMeals Apr 2022
Thanks so much for sharing your experience. This is the kind of experience I'd want for my mom.
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Well, as I sit her with my mom in her memory care… hospice had a hospital bed delivered yesterday just in case… my mom who has been in this building 8 months has probably only slept in her bed for accumulation of a month… she is in the hospital bed now. Her wheelchair was delivered about 3 weeks before she needed it. Hospice was out on Easter when I called concerned, Monday an LPN came out , yesterday the CNA, today the LPN, tomorrow the RN will be out . They believe she is transitioning in the last stage of her life…

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…
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HappyMeals Apr 2022
Thank you for this perspective. I can relate to staff shortages and turnover at facility. Sending up prayers for your & your family as you journey with your mom through these difficult days.
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First I have to say that hospice is not all about giving drugs. Are you her POA? If so, you will have the final say as to what they can give her or not.
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.
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HappyMeals Apr 2022
Thank you so much for this information and perspective. My condolences on the loss of your husband.
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Thank you everyone for your generous and thoughful replies. I am mom's POA, but I'm hopeful she will continue being able to make her own decisions. Right now she's saying no hospice, which I will honor, but I believe the extra eyes/additional support would be beneficial. We have met with a hospice nurse twice, so we have information, but the first thing they always start out is the pain meds, so that's what mom focuses on. ALL of your answers have been helpful. I've recently found this site, and the information in these forums has been invaluable. God bless all of you!
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