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My mother is 78 years old, is suffering from early dementia, is no longer able to walk because arthritis, she needs help getting in and out of bed and frankly does not want to get out of bed even for a shower because of pain. She is incontinent. She has limited vision because of a stroke, and has been morbidly obese for most of her life. Doctors have told us that they have done all that they can for her. She is living in a nursing facility where she gets very good and thoughtful care. She doesn’t eat much, but lately has trouble with a spoon. We are not sure if it is because she is weak or not sure what to do with the food. Most days she seems somewhat happy and content. She does not always remember our names. We have had suggestions from nurses and other caregivers to consider hospice. That would include palliative care. Doctors will not schedule any appointments less than 8-10 months out. We see her going downhill a little every month. Has anyone ever had a loved one put on Hospice care even though they are not really at death’s door? Friends have said that for their loved ones it was a good thing as it was easier on the patient, family, and caregivers.

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Contact Hospice. In my opinion it is never to early.
Hospice will let you know if it is to early and if so they may suggest Palliative Care and if they do accept that. The Team that will see her for Palliative Care will let you and the Care Manager when they think Hospice is appropriate.
My Husband was on Hospice for about 3 years. So when Hospice was started he was no where near "deaths door" I don't think he was even in the same room as the door! Hospice was the best decision I made for him. (and for me!)
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I wonder if I should have waited until my mom got one more steroid injection for back pain… I hadn’t realized until she was signed up , I could not take her for the injections… insurance would no longer cover it. I considered taking her off , get the injection and putting her back on. Lots of hoops. My mom hasn’t cooperated with her care. Has declined. I’m glad I chose hospice over the injection. A nurse comes weekly, CNA twice weekly, minister 3 times a month ,social worker monthly, and a volunteer visits every other week.. my mom gets her depends / wipes provide, a wheelchair recently arrived, a bedside table .. but importantly the hands on and eyes on my mom is the best … my mom will probably live another 5 years , who knows … but her care will be better for it
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RedVanAnnie Mar 2022
You "could" still get a steroid injection, it's just that you would have to pay out-of-pocket for it. When people say they "cannot" do something b/c insurance won't pay for it, they are actually "choosing" not to do something b/c they do not want to pay for it themselves.
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You have no idea when your mother is 'at death's door', really. I begged hospice to come and evaluate my mother with advanced dementia back in November. They felt she was 'still not quite ready' for hospice at that time, which seriously irritated me b/c mom Showtimed them and I KNEW she was more than 'ready': I watched her dramatic decline for months. I asked for another evaluation in late December and she was accepted, on the 21st, actually. She wound up passing away on February 22nd. Two months and one day after she was accepted on hospice care at the Memory Care AL where she lived! In spite of the fact that the hospice nurse insisted she was 'nowhere near death' the week before she died!

Your mother is very much 'ready' for hospice services now. Get her doctor to write an order for an evaluation asap. Hospice is a huge Godsend in so many ways; they provide SUCH a level of support to your mother AND to you, with social workers, CNAs, nurses, chaplains, all intended to help mom and the family with the transition that will take place at some point in the future. The CNA comes in to help bathe mom; the social worker comes in to chat and talk about emotional issues, the nurse does the hands on care & ordering of meds, taking vital signs, and monitoring the patient for changes in health status, etc. The chaplain is there for spiritual support and also to arrange (in my case) for a priest to come into the MC to give mom Last Rites/anointing. Hospice also provides a hospital bed, wheelchair, incontinence supplies, air mattress, bolster pillow (to prevent falling out of bed, and other supplies free of charge. All the meds they use are free, along with lotions, shampoos and other supplies they use to care for the patient. The other great thing IMO about hospice is that there are no more trips to the hospital (unless it's deemed an emergency situation) for the patient, thank GOD for that! No more poking/prodding and waiting around ERs for 6 hours at a pop, and all for nothing. Hospice provides the opportunity for the patient to pass with dignity and grace rather than a horrible experience being rushed back & forth to hospitals and the like. It's never 'too soon' for hospice to get involved. If your mother lives longer than 6 months, she'll get reevaluated at the 6 month mark to see if she still qualifies, and if so, re accepted into hospice care.

I had hospice for both of my parents and it was a good experience both times. Morphine (small doses) and Ativan were used in each case, which kept mom and dad comfortable and suffering no pain or agitation as they transitioned.

Wishing you the best of luck with everything you have going on.
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My LO entered hospice about a year ago, and as far as I can tell, her care level is about these same (excellent).

From her experience, I can’t think of any reason why you shouldn’t opt for hospice care.
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I would ask your Doctor about a meeting with Hospice for evaluation. Meanwhile make that appt for 8 months out palliative care. You say that overall you are happy with the care your Mother is getting. Speak with hospice. There would be some extra care, and also Mom would not be transported to hospital for evaluations and treatments and tests. Ask Hospice in what other ways her care might differ from what she is getting now. Then discuss with family and make your decision. It doesn't sound to me as though Mom has reached end of life. Sometimes doctors are willing to kind of fudge it to get the extra care and recently on a radio program two folks called in who had their elders on Hospice care for 2 years. Both the elders were about 100. Good luck. It is worth consideration I would think.
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There should be a doctor associated with the facility. You tell the Nurse you want Mom evaluated. The facility Dr will sign an order and Hospice will evaluate.
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Yes. I think hospice is a good option in many cases. I have heard some people wish they did it sooner, as they feel they waited too long. You are getting good advice and should speak with the doctor to put your mind at ease .

As for the specifics on the nursing facility, you need more information. Can she stay where she is currently while on hospice? If not, where would she go? Iron out everything before making a decision. Her doctor should guide you through the process and help clarify what will happen, how insurance may be involved, etc. The doctor should be able to recommend a hospice agency and you can speak with the agency director to clarify some of these questions.

Hospice can be very helpful in cases where the patient is dying at home. It doesn't sound like this will be your situation, but there are other options, so ask questions.
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PS: I forgot to mention, the 'family' does not 'put' their loved one on hospice; the hospice company has to approve it based on their determination that the elder has 6 months or less to live. Medicare foots the VERY HIGH bill that hospice charges, so there has to be a valid reason for hospice; a terminal illness that is approved by Medicare for their services. My mother's hospice company used "Senile Degeneration of the Brain" for her dementia; she had heart failure too, but it wasn't bad enough to be considered terminal. So THAT is the criteria your mother must meet in order to get approved and admitted into hospice care at her nursing facility. It sounds like your mother has more than 'early dementia' if she's not sure what to do with a spoon and can't remember the family member's names, so maybe hospice can use the "Senile Degeneration of the Brain" dx if she has no other terminal disease mechanisms at play. The hospice company will have to make that determination, though.

Good luck!
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If she's getting good and thoughtful care in the nursing facility, what does she need hospice for? What difference will it make to either her daily routine or her current medical/healthcare treatment?
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Clairesmum Mar 2022
Health care (in the form of weekly nursing visits and NP/MD visits as needed) will go to her mom in the ALF or nursing home. No more getting her in the car and out to the MD, or the lab, etc. A hospice aide can provide a thorough bath or shower and change the bed linens, in addition to what the CNAs do. A hospice aide reports changes to the hospice nurse - change in intake, signs of pressure areas, etc. That level of detail rarely gets to the hospice nurse from facility CNAs, as it is not considered significant. These are signs of decline and hospice will track them. A social worker and spiritual care advisor support the patient, and the family; help prepare family for death, make final arrangements, etc.
So if the patient qualifies, there is a lot that hospice adds.
As the facility staff are recommending hospice for this elder, they may see signs of decline, and they can always use extra help with patient care.
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Palliative care is care to provide comfort and meet needs but not "cure" the person's disease conditions. Your mom definitely qualifies for this type of care.

Hospice care is for the terminally ill - usually considered to have 6 months or less of life left - that provides comfort and meet care needs. Pretty sure your mom doesn't qualify for this type of care yet. Talk to doctors and her insurance company.
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Yes. I knew someone with a stroke and hospice expected 6 months, but there was always the possibility that the person could linger well beyond that.

As I understand it, hospice evaluates the person to determine if death is expected within 6 months. If yes, hospice may accept the person. Interestingly, there’s no hard 6 month clock once hospice begins.

If the person getting hospice care is re-evaluated at some point and expected to live longer than 6 months, hospice can discontinue care.

If the person is in hospice and let’s say it’s month 5, the care can continue if the person is expected to die within 6 months (after a re-evaluation so it would be an 11 month hospice window).

Hospice does no rehab because rehab is for living, not dying.
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The hospice company will come and evaluate your mom,s condition. Since they make money with every patient, they are more than happy to help you out sooner than later. For us, we were surprised that she qualified when she did. It was a great help with info, healthcare stuff. Visiting nurse etc.. if she doesn't qualify immediately, at least the paper work will be done and enrollment will be that much easier when that time comes. Schedule an appointment as it is cost free...and you will know that you are doing everything that needs to be done
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It's my understanding that most people start hospice care too late, so why not get them on board sooner than later?
Your mom will first have to be evaluated to see if she qualifies, which it sounds like she would for their palliative care, which includes a nurse checking on her once a month, but really not much else.
To qualify for hospice care she would have to be deemed by her doctor that she only has 6 months or less left to live. She would then have aides come at least twice a week to bathe her, a nurse to come once a week to start, access to their chaplain, volunteer's, and you their social worker. They would also at that point supply any and all supply's, equipment and medications all covered 100% under moms Medicare.
And of course she would have to be reevaluated(I believe quarterly)to see if she still qualifies.
So it certainly wouldn't hurt to see if she could at least get under the palliative portion of hospice care as it would then be easy if and when she would need to transfer to full hospice care.
And just FYI, my husband was under full hospice care in our home for the last 22 months of his life.
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Ruthilyn: Perhaps you are able to obtain a telehealth physician visit since you cannot get an in office appointment until eight to ten months away, wherein the physician can better determine your mother's health requirements.
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If she's eligible for hospice, the sooner they get in, the more familiar they will be with her case as she declines. That simple. Better than scrambling when it's become crisis mode.
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In my experience, Hospice care supports the family and the patient. It removes the distraction of chasing a cure and gives loved ones time to love.

Most people wait too long to get the benefits of hospice. They must be trying to work thru their "goodbye" before they make the decision. In actuality, it's is easier to be in hospice and work thru the emotions with the care and support of the hospice professionals.

The only choice we get in life is how we travel the path. When you come to realize that we can not stop death, but we can let go with comfort, support, and love, you are ready for hospice.

I wish you peace and love in your journey.
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My mom had hospice care x3 at the suggestion of the AL in which she was living. And x3 she “graduated” from hospice. The AL continued to provide all of her “total care” needs. The Hospice services visits most of which were beyond her due to dementia. Ultimately she passed away without hospice being active at that time. But this was on 2004 and criteria may have changed.
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