How do you know when it's time to ask for/involve hospice for Alzheimer's cases?

My mother is in palliative care. She did not fit their criteria for hospice. She is still eating and still going to the bathroom by herself. She is having some slips with urinating and I have to change the sheets and her clothing in the middle of the night. I was asking all the same questions. My mother still has a great appetite and if that changed I would know its close to the end.

My mom at one point had sundowners she was having hallucinations and delusions. She would take a knife from the kitchen and keep it by her and she would threaten my husband with the knife. I had to hide all the knifes from her. I finally, took her to the Neurologist and she is on Neudexta, Trazadone, and Aricept. she is a different person back to herself.

My husband's oncologist made the referral to a hospice facility for him. That was a blessing because we got him in right away and they got him comfortable and on pain meds. He is now resting comfortably even though he is going through the dying process. When he was at home, it was awful as I didn't know how to regulate his pain meds...so now I know he is ok and in good hands.

Have your doctor call in hospice.... my doc asked which one I wanted, for my husband in assisted living with alzheimers. Hospice came in, asked me lots of questions, checked husband, and THEY made the decision. Said every six months they would re evaluate him. Sadly, he didn't even last that long under their care. In the home end of May 2014, hospice came in end of July, and he died early November. I agree, it was so nice not to get a call in the middle of the night, asking me what I wanted to do! Hospice was called first, they took care of his meds and eliminated many. They checked him 3 times a week, made his bed, bathed him. I could call and asked a question anytime of day or night, very helpful. Bob could not speak either, no communication of any kind... since 2009. Hospice here was just The Best.

Medicare guidelines for hospice stipulates that a physician certifies that an individual has a prognosis of 6 months or less if the disease runs its normal course. When determining eligibility, hospice personnel looks the big picture, incorporating all diagnoses and how they play a part in the terminal diagnosis (such as Dementia).
The basic indicators include progression of disease (infections, weight loss, difficulty swallowing, weakness, change in level of consciousness) as well as a decline in the Palliative Performance Scale, dependence with activities of daily living and disease specific guidelines.
Disease specific guidelines for Dementia include a FAST (Functional Assessment Staging Scale) of 7A with contributing factors such as sepsis, wounds and malnutrition. A FAST of 7A presents with inability to ambulate, dress or bathe independently, incontinence and limited speech (6 words or less).
It is best to have your mom evaluated for eligibility, as these are only guidelines. If your mother-in-law doesn't qualify for hospice, a palliative care program may be a good option. Palliative care can be supportive of you and your mom through this difficult disease and personnel have a good idea when it is the right time for hospice.

If she has dementia she may not understand end of life care. Her physician can order hospice if he feels she is ready and it's in her best interest. People who have dementia may know what they want to say but they are unable to find the appropriate words or they may just not know depending on the severity. As far as communication, as she progresses it won't matter if she has her hearing aids in or not because she will gradually lose her communication skills. You do what you can in any given situation, you don't say if she has caregivers coming in now. If she doesn't having a caregiver coming in would help you if you are her caregiver. Hospice would also be another caregiving support. Ask her physician if he/she feels it's time for hospice and what other services would he recommend.

DEAR Sophe509:

I BELIEVE YOU MAY NOT KNOW ABOUT HOSPICE CARE. THEY ARE NOT NECESSARILY APPROPRIATE ONLY FOR TERMINAL PATIENTS. I USED HOSPICE CARE FOR MY WIFE AT HOME AFTER SHE WAS DISCHARGED FROM RE-HAB. THE WOMEN IN "HOSPICE CARE "TRY TO KEEP THE PATIENT COMFORTABLE AND THEY GIVE THE CAREGIVER AN OPPORTUNITY TO BE RELIEVED FOR PERIODS THAT WILL MAKE IT EASIER ON YOU.

WHY DON'T YOU CALL "HOSPICE CARE" AND DISCUSS YOUR SITUATION WITH THEM. THERE ARE MANY AGENCIES THAT DO
"HOSPICE CARE"..

GOOD LUCK,

SONNY

Hi I am sorry about all you are going through. With my mom, when I felt hospice might be helpful, I just called. They came out for an evaluation. And in their opinion they felt that hospice was necessary. At that point, they contacted my mom's doctor and he cancelled the medicare nurses that had been coming to visit her and moved her to hospice care. Now here is the important thing....I thought I was being smart in keeping my mom's doctor as her primary, not giving hospice's doctors that role as I did not know them. The problem arose when at the end, my mom needed morphine etc to keep her comfortable and her regular doctor would not prescribe those meds.....so we were in a bit a hectic rush getting her transferred to the hospice doctors so he could give her the morphine to help her breathe better. So getting an evaluation by hospice is always a good first step.

Well your mother cannot have hospice without a doctor's orders. Speak to the doctor again with definite answers. The time is coming, perhaps not just yet.

The six month rule has never applied as long as the patient continues to decline. the hospice has to provide evidence to Medicare about the patient's condition,such as weight loss, inability to eat etc.

The six-month limit doesn't apply any more for hospice care. It can be longer is the patient meets certain criteria. A hospice rep in your area can explain it.

Sophe you have recieved wonderful advice. You can request a visit from hospice at any time to evaluate a patient for hospice care. The patient's Dr has to make the final recomendation but hospice can tell you when someone who is ready for their care. Patients do have to meet certain criteria for hospice care and something like dementia is very difficult to evaluate. Things like a sustained loss of weight will be a very good indication. It's never too early to consider the possibility for hospice even if you feel you are not ready.

Hospice nurses have seen so many people who are non-verbal that they can tell when someone is distressed and track down that cause. There is someone on call 24/7 if something happens. I had told Hospice not to call me during sleeping hours unless it was life threatening, so when mthr fell and broke her wrist, Hospice was the one getting up in the middle of the night, assessing the situation, and handling it the way we discussed before it happened. As a result of the fall, they moved her ottoman, her favorite hidey-hole, into her closet where she can still use it but she's not tempted to climb on it. (she can barely walk, I have no idea how she was climbing!)

They have her on drugs which stabilize her mood and keep her from being so paranoid and anxious. The doc had her on a mishmash of dru,gs some of which he'd thought he'd stopped and she was so confused. Hospice has her meds straight and checks them from the pharmacy. It is such a relief to have someone else checking these things!

Both my mother and my husband have/had dementia. Generally, the applicant has to be in a condition that would typically result in death within 6 months. Some types of cancer can be fairly accurately pinpointed this way. Dementia is much harder. From my experience I'd recommend involving hospice if her doctor thinks it is appropriate.

I signed my husband up when he began to physically go downhill, sleeping more and more, having trouble swallowing, getting too weak to walk. He was at home at the time. I can't tell you how wonderful it was to have medical attention come to him. There were several conditions they solved immediately. The nurse even came up with something to minimize his constant drooling. He definitely was more comfortable and dignified with hospice care. He died after five weeks, holding my hand.

My mother is in a nursing home. A few months after being there she broke her hip and became delirious. The hospital didn't expect her to survive the week. She went back to the NH with hospice care. She got lots of extra attention, a very comfortable wheelchair, a special bed, volunteers spent time with her, doing things like giving her gentle hand rubs, and doing her nails or fixing her hair. Hospice took over her medications, and it was very easy to work directly with the nurse. Hospice is awesome for cutting through red tape. After three months my mother "graduated" out of hospice. She improved enough so there was no reason to believe her death was imminent. (In her mid 90s it isn't far into the future, but not within 6 months, as far as anyone can tell.)

Since your MIL has nothing "fixable" I don't see any downside at all to involving hospice. (If she had to decide to forego chemo, it might be a tougher decision.) If she is on the final leg of her journey, hospice can make it smoother for all of you. And if that prognosis is wrong, she can leave hospice and come back to it when it is more appropriate.

As to communicating with her, hospice could help you with that, too. Remember that even if she doesn't know exactly who you are, she will know that a kind person is visiting and treating her nicely.

Surprise, Wow, thanks very much for this very interesting information about hospice. I read your answer to my husband as it's his Mom. He's the stoic type but I know he's worried about her a lot. Keeps trying to fix something, anything for her. She is calling multiple times in even just 15 minutes, sounds distressed but we can't figure out what's bothering her. I'm very interested to learn what hospice has done in your situation. Thanks.

Sophe, Your mil is about where my mthr is... Hospice comes to her memory care and checks her out for signs of UTIs and other ailments, straightened out her meds, and helped us make final arrangements in advance. When she fell, they brought out the mobile xray unit so she did not have to go to the ER where she would have been out of her mind with fear. Hospice managed her meds through that painful break and she never had to leave her space. There are about 8 other hospice patients in her MC home out of about 20, so they bring in lots of performers - instruments, vocalists, they even have hospice activities separate from the MC activities. Hospice has been wonderfully helpful, and the counselors even help the grandchildren.

It's her doctor who has to certify that she's eligible for hospice. Call him and set up an appointment to discuss if this is an appropriate move.