Mom has dementia and has suffered from a stroke. I can no longer care for her. Is hospice, either at home or at a hospice house, the next step, or should I get her a full-time aide? - AgingCare.com

Mom has dementia and has suffered from a stroke. I can no longer care for her. Is hospice, either at home or at a hospice house, the next step, or should I get her a full-time aide?

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Mom will be 93 this month and is close to late stage dementia. She went to the hospital last week with dehydration issues and atrial fibrillation. At some point before her hospitalization she apparently suffered an "event" and may have even had a small one after she came to stay with me. It's now to the point where I can't care for her because she can't walk and I can't lift her. Some have suggested hospice either at the location or at home or getting her a full-time aide. I know what I would want if I were in my mother's situation, but I'm not sure what she would want and what would be best for her. Even if all of her physical and medical issues would miraculously disappear, she still isn't going to improve mentally. For me it's all about quality of life, but I know it's not the same for everyone. Anyone been through this situation and what were your experiences? I'm the only caregiver and Mom has no directives or proxies and I don't have POA.

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Like mom2mom, my mom has hospice at home. She is stage 7...totally bedridden, double incontinent, has to be hand fed.... We already had a hospital bed so they didn't provide it. They do send a CNA twice a week to bathe her, a nurse once a week to check vitals, and we have seen the social worker twice in the 7 weeks she has been on hospice. They do provide medication too.
Once issue I have is that they only provide Ativan for agitation and my mom has always used Seroquel. We still have some so that is what I use. My son in law, a doctor, says Ativan is a nasty med and he would never use it with anyone over 70 especially with Alzheimer's.
They do not provide caregivers, at least in my state. They do allow for respite care, but you have to agree to 5 day minimum and the only do it in their facility. My son is graduating from the University next week. It is three hours away and I are going for 2 days (my husband kids and grandkids will stay three days). I am paying out of pocket to have caregivers come to my house. Mom would not do well in a facility.
Be sure to ask all the questions you can about what services are offered. Good luck!
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ya i agree with mom2mom that is true what she said ..well everyone is different so you will have to make your decision on your case .
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My mother just entered hospice. She is on Medicare and has supplemental insurance. We are in Maryland.

Once she entered Hospice, everything is done though Medicare. her supplemental insurance is no longer in the picture.

On Maryland Medicare if Mom went into the Hospice facility EVERYTHING is covered 100%.

Instead, I honored Mom's wish to bring her home. Hospice has provided a hospital bed and all of the supplied I would possibly need (I provide bedding) They send nurses, they bather her twice a week, they offer social workers, grief counseling etc.

The only thing they do not provide is actual caregivers. Mom has to self pay for caregivers. Through an agency, 24/7 care will run $14,400/month. I have opted to stay with our current helpers for 52 hours a week and do everything else myself for about $6-7K a month.

I am about two weeks in and am considering reneging on my promise to her to let her die at home because, frankly, it is really, really hard to take care of a bedridden patient alone.

Mom has a catheter but I keep finding her in a lake that I can only assume is coming from her bowels. She has been vomiting once to twice a day and that requires a bedding change and a clean-up.

Lesson learned - Dying at home is very expensive and trying to care for someone who is completely bedridden is really hard.
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since you do not have POA ..THE NURSING HOME WILL NOT LET YOU KNOW HOW THEY ARE TREATING HER my mom was in one for 13 days to get her strength up .they will not tell me a thing about her meds ..if she has life ins.she will lose that & they may not bury her the way you or your family want. hard telling what they will do she will be more like a piece of property to them i think so if you can try to hold out letting her go in a home ..i hate them !!!!! my mom was in hospice care for almost a month & i manage to get her back on track after she was in the home ..your mom is close to needing hospice care .she did probably want to go at home they will help you -the hospice care they provide everything you need ..they will explain everything to you .so you need to contact the hospital ask for there hospice care phone # & schedule for them to come out to talk to you ..so good luck .they will help a lot they will tell you ..if you can keep her at home  because you have no rights if she was in a home ..i got lucky was able to get my mom at home & she went down on her own i do not think she ate enough food to live & i think she just stayed in bed till they needed her to exercise .then she went back to bed ..she stayed in bed most of the day & night up for a hour ...well good luck 
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I can only offer you my own opinion on what I personally would do. My mom had late stage dementia and was also in a long-term facility. A week before she passed, she was evaluated and placed on Hospice Care. The Hospice representative explained to me that they would work in tandem with the nurses and aides at the NH. Because of her condition, which included frequent falls, the facility's MD was also notified and she was closely supervised by him. At that point, she had no idea where she was. But I, personally, knew she was in the right place with the right care. Now, my husband has A-Fib. There is no cure, just monitoring and medication. Last February, he was admitted to the hospital for mobility issues. He was sent to rehab from the hospital and has been there for the past 3 months. I have to say it has brought me great peace of mind to know he is surrounded by health care personnel who understand and monitor his medical issues. I know he will eventually come back home and in his case, I can care for him. His mental state is good. But in my mother's case, because she had a tendency, as so many who suffer from dementia do, to wander. She also became combative. I knew I could not care for her. Each case is so different with dementia. The only constant is that it gets progressively worse. I would not have been a good caregiver to her or my husband because my stress levels would have been through the roof. I wish you onlybthe best in making this difficult decision. Call in all the help you can with making this decision. Just because mom has been discharged doesn't mean you can't contact the social services department at the hospital. Good luck!
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If she's not mentally able make medical decisions, then in most states the next-of-kin can do so, even if there is no POA. As her surrogate, ethically you are supposed to choose what you think she'd want for her herself and/or whatever serves her best.

She may or may not be eligible for hospice. Being bed-bound and with advanced dementia in of itself is not usually enough for doctors to say the person is likely to die within 6 months. But if her doctor knows her and her health situation, he should be able to tell you whether she would be eligible for hospice services.

In general, it sounds like you think she may have reached a point at which repeated hospitalizations are not really meeting her needs. So even if she's not eligible for hospice, it would be a good idea to discuss your concerns with the doctor and possibly also a social worker. There are "pre-hospice" and other forms of outpatient palliative care programs that are sometimes available.

Good luck!
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Thank you both for your responses. To answer some questions raised. Mom was released from hospital last Friday after having been admitted the prior Saturday. I had mentioned that I was concerned she had had some type of stroke because her speech was not clear. They didn't do a CAT scan and once mom's dehydration issue and atrial fibrillation was in check they released her this past Friday. They said she didn't have a stroke. She did seem stronger and while she was there had been wandering near the nurses' station on her own but she wasn't perfectly steady. I thought perhaps they would send her to some type of rehab but my understanding is that Medicare would only pay if something physical, like a broken foot, but they don't rehab for dementia. So they sent her home with an aide but although the aide was good the agency that supplied aides was so disorganized and not on top of things at all so I gave that up. Mom proceeded to deteriorate and I wanted her to follow up with her GP as I learned he no longer does rounds but his in hospital patients are dealt with by hospitalists according to new guidelines...totally illogical, in my opinion. Also, he wasn't permitted to see her on the same day she was discharged for a Medicare payment reason. She was able to get an appointment this past Wednesday and he didn't have to do anything but look at her and have her walk with his assistance to tell she had had some type of event. I'm waiting to hear back from him as he is filling in paperwork to send to the long term care policy company which I had set up for mom many years ago. I'm hoping he comes up with a plan going forward but wanted to get input from people on this site which has been very helpful in the past.
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So is mom right now still in the hospital? If so, I'd suggest you contact social services asap to discuss placement options for when mom is discharged. It sounds like you know that you just cannot provide the level of care and oversight that she needs. To me, it's really good that you know this as so often family bring them back home and then find they just cannot do what is needed and everybody (mom, you, mom's MD, hospice staff) are worse off than before…..
So mom would go from hospital to hospice in a facility.

My mom was on hospice for 18 months, she was in a NH on Medicaid for about 2 years and then fell (pulling her wheelchair no less), shattered a hip & became bedfast. X-rays done at NH via portable unit and NH medical director suggested hospice rather than surgery. I agreed. Hospice was paid by Medicare (about $ 4500 a mo). BUT the room & board aspect of the NH still paid by Medicaid. R&B at a facility isn't covered by Medicare long-term. I will say for my mom's NH, their regular staff and hospice staff really worked well together. It's like hospice provides extra hands to get things done and extra folks for you to lean on if need be.

My MIL too was on hospice but her situation was different. She was in a NH & "medicaid pending", became very ill & hospitalized. Severe septic and after stabilizing from shock at hospital transferred to a hospice only facility. Free-standing hospice & not a NH. Since she was hospitalized the transfer to hospice was covered by Medicare under a extended-hospitalization benefit as she kinda needed an ICU level care but had the services done at hospice. It's similar to the Medicare rehab benefit that pays for the first 21 days 100%. She was super septic and died within 3 weeks. All covered by Medicare. If she had lived longer then either it would have needed Medicaid or private pay . My aunt had a similar free-standing hospice post hospitalization situation at a VITAS unit.
Medicare may pay for a short window if the ICD-10 codes allow for the services at hospice unit.

For both MIL & my auntie the free-standing hospice were both part of a big chain (VITAS, Compassus). Both had been a hospital that converted to hospice facility with sophisticated equipment. If you speak with the bigger hospice groups, they will have someone who can walk you through the ?'s as to whether your mom would be the type of patient to go to a free-standing hospice and how payment gets structured. I will say for both my MIL & Auntie's situation, the type of resident were either very very ill (sepsis is pretty serious, like most elderly don't recover) or were end stage cancer. All seemed to be on some type of black-box drugs that need strict oversight. Most were younger & just a very few elderly. My point is that being eligible for hospice may not mean also being eligible for hospice at a free-standing hospice facility. Hospice can happen at home, at a NH or a hospice facility. Nursing staff were superb. All the hospice staff I've dealt with all really have known their stuff.

Really speak with social services at the hospital first and then hospice. There could be several hospice providers to choose from. As it's a Medicare benefit, it's in theory self-directed, so you select the provider.
Good luck & let us know how things work out for mom.
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You can do hospice at home with around-the-clock care or 12 hours/day care but if your mom isn't able to walk or be lifted she's liable to spend the rest of her life in her bed. This happens sometimes. I work in hospice and most of my patients were bed bound.

If you do hospice in your home the hospice company will supply your mom with a hospital bed that has a special mattress and controls for her head, feet, and middle, and the height of the bed. The aides will be able to care for your mom from this bed using the controls. Hospice will also supply your mom with anything else she may need such as medication, adult diapers, skin protector, and really anything else you can think of. They provide bathing (in bed), spiritual support for your mom and your family, music therapy and all kinds of other little extras.

Another option is hospice in a long term care facility. You'd have to speak to a social worker at a facility regarding payment. Different types of facilities can do things a little differently.

Then there are hospice facilities. I only do in-home hospice so I don't know much about hospice facilities, what they charge, etc.
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