A guest speaker at the ALZ. mtg. discussed Hospice. I found out that since ALZ. is a terminal illness, Medicare will allow a little more "leeway" as far as the 6 month rule of end of life.
Wonder why doctors are reluctant to suggest Hospice? They sure order home health where the patient continues to get stuck with needles, checking cholesterol, etc. There comes a point in time when, SO WHAT if the cholesterol is high!!
During my husband's last hospitalization, his hospitalist was a d.o. This was new to us; the first experience outside the md system. The doctor recommended palliative care. First, he needed to go to rehab to focus mostly on swallowing issues.
The house doc at the palliative care ALF was also hospice certified and there was really no hesitation at all in suggesting hospice, for which I am very thankful. Medicare was not an issue as my husband was too young. I understand that it can be implemented if a person has been on SSDI for two years but he did not meet that requirement either.
I really did not expect or know about these resources. I have though, told myself that I would highly consider consulting a d.o. for myself if/when, and I should but have not done it yet.
I think their philosophy is a bit different from the medical model but don't know enough about it to say for sure.
I requested hospice when I moved my DH to nursing home last August--nursing home staff wanted it also---he had no trouble qualifying. It prevents the nursing home from having to send my DH to the hospital if he has a UTI or other infection, etc. Also, hospice was much quicker to find my DH the wheelchair and shower chair that fits him and they provide certain other supplies on a regular basis---mostly his bed pads and some diapers. The hospice nurse visits my DH at least twice a week--the physician that does rotation at the nursing home only visits when we requests. Also, I understand from the nursing home staff that if someone is on hospice, that means the rehab people (because my DH is in skilled nursing facility) won't keep asking to rehab him!
It was our PCP (He was PCP for both of us) Who signed off on Hospice for DH. And DH was on for 10 months, no problems getting him on or in getting any help we needed. And we live in a small town without many resources. Our Hospice seems to be up to speed on AD. Also during DH time with then, I offered the opportunity for them to send anyone over who wanted to spend some time with DH and see what EOAD was like. It might help then understand more how it affects the patient as well as the family. Most of the team were able to meet younger DD and older DD and SIL and DS. We did in home Hospice and it all seemed to work out for us. I feel very blessed with the team we had. I hope more doctors recommend Hospice to families, our PCP did say that so often that the families of AD patients just feel like they are giving up to call in Hospice. It must be hard to balance the needs of the patient as well as the family.
We had a speaker at our AZ support group meeting last summer. She said that most people don't call for hospice until the patient only has a week or two to live. She said to call and a team would come out to evaluate him. I dragged my feet for a couple months and then called. A team was here the very next day and they approved him on the spot. They called DH,s pcp on a Friday and he had signed off by the following Tuesday.
Our 6 months is up next week but he is already approved for the next 6 months. I can't say enough good things about all of the team. Aides come bathe him 5 mornings a week, the nurse comes 2 days a week, the chaplin and social worker about every 2 weeks. This week I am going to sign up for a volunteer.
When he went into a NH for respite they went there to do for him. When he could no longer get out of bed, they had a hospital bed here the next day. When our power was off last month they found a bed in a nursing home and a private ambulance to transport him. Someone even came to shovel the walk so the stretcher could get to the front door.
Here in Vancouver, Canada, we do have hospice, but unless you ask your doctor, or care facility staff, it isn't offered. Perhaps this isn't true at all care facilities, but it was at the one my husband was in. From what I have read here, it is of great benefit to the caregivers, too, to be able to have someone to call when needed.
When I mention to anyone that my DH is in Hospice, they immediately assume he only has a short time to live. I believe it's because dr. doesn't set it up until the very, very last few days of a person's life. My DH has only had Hospice for a week and already I feel some relief just knowing I have a team behind me that I can call 24/7. When I ask the dr. what was available to help with ALZ. he said, "Well a lot if you're poor". That wasn't what I ask him. He went on to say he didn't know much about the resources available. I knew I needed to research. It just so happened I was at an ALZ. mtg. on Monday and DH had a dr. appt. on Tues. The topic covered at the mtg. was Hospice. I TOLD the dr. (Not asked him) I wanted Hospice for DH. I only wish I had done it sooner.
I asked our neurologist about palliative care and he set me up with a group he works with, who qualified my husband for palliative care paid for by hospice. I was shocked he qualified for hospice as I would guess he has 6 months to two years to live, but glad of the help. We got an aide for an hour or two 3 times a week, a nurse once a week, and a social worker and chaplain once a month. What was most helpful to me was having someone to call when something went wrong--the nurse came several extra times to help with various problems. And wonderful to get needed prescriptions without having to make a doctor's visit.
As I was surprised my husband qualified, I didn't investigate other companies. This one was a bit small, for example, they only had aides available M-F 8-4:30. As we had to add more paid help, it would have been more helpful to have the hospice aide come in the evening or on weekends. They only had one model of wheelchair available--when he goes back on hospice the larger hospice he goes on will provide a positioning wheelchair. I was frustrated that the first hospice did not as a matter of policy do urine cultures for UTIs, even when it seemed to be resistant to the first antibiotic. They would not provide any PT or OT services even to try to solve positioning issues that were causing pain. Ask lots of questions--they get paid a flat rate per patient by Medicare so they like to take patients early and provide limited services.
I thought I would be able to keep my husband at home, but when he needed help with every transfer I found it wasn't working and I moved him to a nursing home. I took him off hospice at that point so that he could get PT and OT help with the positioning issues. They did take a rehab approach, which I found frustrating but he seemed to enjoy the attention. It turns out the nursing home doctor is there one day a week and is willing to take a comfort care approach, so I don't feel the need to bring hospice in again until my husband needs that special wheelchair.
Pamsc, Instead of a wheelchair, Hospice brought a "transporter chair". It's looks just like a wheelchair except no large wheels on the sides, (which DH couldn't use anyway) and is lightweight. You might like something like that.
We do already have a transport chair (they don't cost much more than $100 on Amazon). He leans to the right, and at some point when that becomes a worse problem he will need a Broda chair like this http://www.seatingisbelieving.com/chair/2 to keep him from leaning over the arm of the chair all the time.
It's really mind boggling the decisions we have to make for our DH. Never know what's going to come at us next. But the sad thing is......, we only have a tiny glimpse of what they're going through. It just rips my heart out.
Carolyn: I am going to be a guest speaker along with another more experienced volunteer on behalf of Hospice at a local hospital staff meeting to explain: Hospice requirements, Medicare Qualification etc. I just received my prepared speech and background info for this presentation this AM . (this will be my first presentation since I passed their requirements for them to wave the 1 yr rule and completed their advanced training. )
Following some advice from two posters on another thread, I called the PCP and asked her to make a hospice referral this morning. I was told to call our local Hospice and that I could make the referral myself; I did that this morning, and the Hospice nurse is coming out this afternoon. So we shall see. I just had my second night in a row being up with him four times--he is loud and hallucinating, picked off the dressing on his skin tear (from a recent fall) and bled all over the bed linens…twice. (Sheesh--I should open a laundramat.) He keeps rattling around trying to get things on his nightstand, or turns on the bedside lamp…for reasons that make no sense. For instance, said he needed his glasses, (at 3:30 am), but was holding his NYPD police badge and I guess thinking it was his glasses. The doctor's office and also my daughter gave me the well-worn platitude advice that I must "take care of myself." I wasn't rude (like I felt like being), but just said politely that that was impossible. So today I'm soaking blood out of sheets and trying to get them clean. I got a bowl of oatmeal into him with his meds, and a mug of good home-made vegetable soup at around 11am. I made him get up and sit in the chair to eat, but all he wants to do is lie in bed. (Yeah, me too, but I'm gonna rest my eyes in a chair for awhile.) My daughter and s-i-l have made plans to take over the childcare responsibilities that I do for them--so that will make life easier.
elizabeth, When Hospice comes, make sure your DH is "as is". Don't get him ready, don't coach him in what is going to happen. They need to see the real DH. I wish you well with this. Also if your dH wanted to be in bed that may be best. Towards the end my DH did not want to get up or eat. This seems to be the way this goes. He may be at the point of not feeling hunger and wanting to sleep. I let my DH set the pace, and just tried my best to guess what he needed.
Hi blue--Hospice just left, and they turned him down…said he is not quite bad enough to be admitted yet, but to call them when he gets worse. The nurse did walk in on him "cold", and unfortunately he remembered that he had been a policeman when she asked him his former line of work--she did not ask him to transfer or ambulate, or spend more than two minutes with him--she spent most of her time with me, not with him, although I did somewhat manipulate her into watching him transfer and ambulate. (Obviously he was unsafe.) She asked him the date, which he said was 1949, and she asked him who is the president, which he did not know. So it is still all falling on me, at least for now. My daughter and son-in-law are taking back all the care of the three grandchildren--they will all be in school or after-school care programs from early in the morning until the parents get home from work…which is exactly what we did not want for them. But I can't possibly watch the grandkids with grandpa this bad…so besides me being trapped and exhausted, the three little grands are losing grandma. I don't think Hospice makes much money from Medicare billing…or maybe their caseloads are a little too high for the staff they have. Who knows. Anyway, it was a no. Nothing has changed my mind that Alzheimers is the new leprosy…and spouses are on their own. There are a lot of platitudes and baloney, but most people (and agencies) don't care and don't get it.
I don't know how it is in your town, we have two Hospice here. And we are a small town. Check and see if there is another one. Also call you PCP and see if there is anything they can do for you. I am so sorry, I do hope you can get some help of some kind soon.
Edit to add, I do think it seems to be so hit or miss.
elizabeth, I had the same experience as you with hospice here. He could not get up, could not walk without my help, I fed him, dressed him, bathed him, shaved him, took him to the bathroom, did everything - but he did not qualify until 11 days before he died, when I got him admitted to a nursing home. Only one hospice here, too. There doesn't seem to be any really 'standard' qualifications for all hospices. So sad for we, who needed it, or needs it now but can't get get it. My heart goes out to the you.
Yeah, the more I reflect on this (after being in healthcare for 42 years myself), the more I realize it has to be a money thing. They are not going to make anything off of the kind of custodial care that Alzheimers clients need. If he had some kind of cancer with a definitive prognosis and a need for all kinds of high-tech care, he would have been admitted like a shot. Also, the fact that I'm a nurse works against me. They know perfectly well that I have the skills to take care of him (just not the endurance--14 years, sheesh!), and they figure I can give him a shower better than any aide in the county. And they're right. But that doesn't mean I don't need some help, which was the whole point of calling in the referral. Oh well
Elizabeth The Hospice's do very well on Medicare reimbursements just by ordering and billing for every conceivable item. Medicare, is their primary revenue generator. My DW had an O2 generator, a commode, toilet rails, they even delivered a hand shower 3 cases of diapers, 480 wipes (DW was never incontinent until she was in a locked down NH) I had all these items place before she was in Hospice care, they even delivered shower safety rails which also were in place and none of their equipment was ever used during the three months she was in Hospice care. The admittance focus will always be on the caregiver for information. The Nurse is trained to observe and evaluate the patient with minimal interface. Failure of a mini mental test, the inability to ambulate transfer and behavior issues are usually not sufficient reason for acceptance to Hospice. Hospice's stated goal is to minimize the patient's PAIN (not the caregivers) and is for those who are at the end of life phase (6 mos) and can no longer benefit from, or seek to obtain medical treatment of their disease. With Alzheimer's unlike cancer or other terminal diseases your PCP must be willing to take part in your battle to gain admittance. I not familiar with a case of an Alz. caregiver ever being successful making their own referral. You've got to get a referring MD to contact them or other Hospice provider again and you do the same, do not take the first NO final keep fighting.
Right, in my experience you have to have the physician sign that there is a 6-month prognosis to even have Hospice come out and take a look. My physician told her office to tell me to call in the referral myself. Odd, I agree. In terms of pain management, I know that that is a common reason for a Hospice referral. That is one reason I thought Hospice might be useful for DH, as he complains a lot about back pain following his several recent falls. It isn't relieved satisfactorily by OTC meds., although I adjust them as best as I can for his comfort; and I'm unsure whether it's a good idea to give him prescription rxs. that will either constipate him worse than ever or make him even more confused than he already is. I think it's poor nursing to evaluate a patient based on an interview with the caregiver. You have to do that, of course, but in assessing a patient for a given program, you have to take a good look at the patient…not just what somebody else tells you. I think DH's safety and comfort would be maximized by some durable medical equipment, and I believe Hospice can help set that up…so, the needs are pain mgmt., durable medical equipment, and nursing case mgmt….as sometimes I feel that I'm too close to the situation and would like another pair of eyes…I'm looking for help for my husband, not for myself, and I do realize of course that services are for him and not for me. I've never had an Alzheimers patient go to Hospice--it's usually cancer, or sometimes a very end-stage pulmonary or cardiac condition. So I was cautiously optimistic that maybe I could get services in Ohio that I would not have been able to get for him in New York…but c'est la vie. We have handled this as a family by lightening my child care role so I can be all the more available to DH. Sometimes you just have to figure it out for yourselves--we call ourselves the Waltons of the New Millennium.
I called our Hospice and told them that DH's PCP was willing to sign off on any paper work needed. I did the call myself and set up our first meeting. DH was on for almost 11 months.