Hey all-
What exactly does hospice do? I know it is end of life stuff, but if your LO gets something treatable (like pneumonia), I understand that hospice won't treat it but can you then take your LO to their dr to get meds or is putting someone on hospice like a death sentence? My mom is definately terminal, but her recent pneumonia has been treated with antibiotics. If I had placed her on hospice, would she just have just died of it? Kind of confused.
Thanks-
Sandy O.

Sando O,
Hospice is for end of life care. It is called "comfort care" or palliative care! If you had put your Mom on hospice, they would have treated her pneumonia with antibiotics because she would have been uncomfortable with it. They would, also, have given her oxygen for comfort. Hospice is NOT a death sentence. It is for patients that are in the last stages of their diseases and there is no longer a cure. Hospice manages many things not only medically but spiritually and emotionally!! The hospice team consists of and RN, an Aid, a Social Worker, a Chaplain, a volunteer and of course, a medical director! If you are interested in Hospice, contact your Mom's doctor, ask people you know if they have had any experiences with a particular hospice.
Good Luck
I hope this information helps!

Peace and Hope,
Lisa

The majority of people wait until far too late to plug hospice in. Hospice can often be started much earlier than we think.

They are extra eyes, ears and hands. There is care management for all facets of care, they are usually quite compassionate. Hospice is all about living the highest quality of life one can with an illness that is eventually going to be fatal. Hospice is not consigning them to death or to an early demise based upon non-treatment.

Infections can indeed be treated and usually are. Diets are modified and tailored to suit. They pay for all equipment and O2, incontinence supplies and all medications for comfort care AND all medications pertaining to the "admitting diagnosis" - the diagnosis listed by hospice when admitted to them.

I think it is always a very good thing to contact a couple of local medical centers and also the Alz's Org and find out who the professionals recommend. I personally chose to call three different hospice organizations and interview them regarding their services.

Ask to speak to the supervising RN, NOT the intake person. Tell her/him what your mother's condition is, and ask about their approach and their philosophy toward care. You will find that one may well be a better fit over the others.

Once you have hospice, you can opt out at any time. Medicare covers all services and you have nothing out of pocket for hospice approved services. It doesn't happen often, but if you get a hospice organization that just does not suit you, you may change hospice organizations just ONCE in a certification period. Hospice will explain certification to you.

Also know, if you like your hospice, but a particular nurse, aide or volunteer is not a good fit, it is perfectly fine for you to contact hospice and request a replacement. There is no negative to doing this - hospice wants patient and family to be secure and comfortable in their care.

I wish you the very best,

I'm printing up Johanna's response to this great question. I spoke to a local hospice
recently because their brochure indicates they offer services for folks w/ "Advanced
Dementia." Well, if I were to "stage" Dad's vascular dementia using the Alz. scale,
he'd be considered stage 7. When I called the house Dr. at the nursing home he sort
of "poo-pooed" my suggestion. I'm calling and INSISTING. His argument was "its really
for dying people." I said "my father may not be ACTIVELY dying but he does have a
"terminal" illness. I don't get why this Dr. reacted the way he did; I want my Dad
to have ALL the services and help thats available to him. I appreciate this discussion,
and AGREE w/ Johanna that many people "wait" for hospice, when all along their LO's
could've benefited from these services. We should all probably check w/ our local
hospice organizations and talk to them, and ask lots of questions. This way we'll
be more aware of the services offered, and more likely to bring hospice in at a
time where our LO's will benefit most. Take care!!

Had Mom to the doctor on Feb 25th for follow-up to UTI, she suggested a referral to Hospice-12 program, thinking it was much the same as the H-6. When the admitting nurse came out, Mom was the sickest she has ever been with me in 6 years. I believed it was the flu, since we had been in the drs office. Anyway the nurse was sure mom belonged in the H-6 program, just based on her dementia symptoms. That weekend it was wonderful to have hospice just because there was a nurse at the other end of the phone when Mom's fever went sky high. The H-12 program is not covered by medicare so you pay for the services.
Now that we are on H-6 and Mom has recovered from the flu I am wondering if they will fire us. The home health aid came out once was nice, but she is only allowed to give Mom a bed bath, as she is unable to walk in the shower. I am still willing to wrestle her in the shower chair and do the job. We already have all the equipment and their depends don't fit very well. I did have the chaplain come out, declined the volunteer, as I have private help 2 days a week and the most needed respite for me is an evening to go to dinner with all my family and am afraid that would seem frivolous.
Anyway don't know what my point is, except that I am still trying to figure out what role hospice is going to play. The nurse is coming out today and that I completely welcome, as this week Mom is having a real problem with constipation and I need professional advice. Sometimes I get so caught up in the details someone to remind me of the big picture is needed. My best to you all and your loved ones, Martha

Lisa,
My husband was admitted to hospice just yesterday. We will have a nurse come to the house twice a week, an aide will be out 3 times weekly to bathe, shave, change clothes and change the bedding. She would be here between 1 and 2 hours at which time I could leave the house if I wanted. They will also provide a volunteer who will come and stay 3-4 hours a day if I have an appmt or just need to get out. They also provide 5 days of respite every 30 days. During this time he will be admitted to a NH that deals with AD and I can do what ever I want for those 5 days. If we, my DH and I, want to go away for a week all I have to do is let them know. During the summer we spend a lot of time at our home up north and during that time they will switch the hospice care up there.
Also they provide all meds except for his synthroid (for thyroid), diapers, hospital bed, wheel chair, bed side commode, bath chair, walker, air mattress and a bed table (like they use in a hospital) for over the bed.
Plus 24 hour phone call away.

I signed him in yesterday and it is now 10am today and all the equipment has been delivered and set up. The RN and social worker that will be working with us is to call by the week end.

I admit that last night I went to bed feeling that things were working out pretty good.

His condition right now is: able to shuffle around the house, eats with no problem as long as I set it in front of him, mostly incontinent (will use toilet for bowel movements unless he has diarrhea), cannot carry on a conversation but is able to say words, doesn't know what things are, for example he doesn't know what a refrigerator or table is.

I kept putting hospice off even though the doctor said he qualified because I didn't think he was THAT bad yet. I'm glad the doctor took the initiative and called them himself.

I'm using Hospice of Mi which is state wide and that's why they will provide service when we are up north.

Martha: You don't have to wrestle her into the shower, let the aide do that. And, if their diapers are not fitting Mom well, let them know and they will provide ones that DO fit well.

Let hospice do for you. And, they may well be able to get a volunteer sitter in the evening so you may go out to dinner with family. That is NOT frivilous, it is therapy for you to be out and away and will contribute to NOT burning out.

If you are perplexed as to the amount of time hospice is willing to assist, or just what is going on, please contact your social worker and she will help you. When my mother entered hospice, the social worker was able to get me to, "let go" better than I had been.

I wish you well,

Lisa,
I just found out today that if I want to extend the 5 day respite to a week or even longer, all I have to do is let them know that I will be gone longer. Hospice will pay for 5 days and the balance of days I would have to pay but hospice will still be there to care for him.

This is sounding better with everyone I talk to. I'm already feeling better just knowing that there is someone out there that I can fall back on.

So you are all saying that even though Mom is in stage 5-6 I can call hospice and they will come out to help us?

The hospice that has been providing care for my Dad has been awesome and very helpful. One thing our hospice provides is a music thearpist that comes weekly. He spends about a hour playing his guitar and singing all my Dads favorite songs. Sometimes my Dad can't even keep his eyes open but when you watch him his little foot will be keeping time to the music. It is the most amazing thing to watch. I hope everyone else has this service because it truly is a big part of the hospice blessing for us.

Johanna,
Honestly I don't feel it is frivolous to take breaks, and after reading Joyce's post about 5 days of respite I asked our hospice nurse about that. She said they did provide 5 days in a NH after 6 months for caregiver burnout. I worry too much about what people think and could imagine hospice thinking "gee her mom is in her last 6 months on earth and her only daughter wants a night out or a vacation?" The only way I have been able to stay the course is by taking care of my needs too, but it does get harder. Our private aid(10 hrs/week) will be out of the country for 6 weeks this summer and I am counting on the help from all hospice offers at that time, if things stay relatively the same. Appreciate your good thoughts. Martha

Both of my parents qualify for Hospice, but we don't have it. I had considered it a while back and if their insurance would pay for it, I probably would have enrolled them on the spot. They only have Medicare part B and a "Medigap" policy with no Medicare part A.

Anyway, since that time I have used Home Health a LOT. My dad has a pressure sore that became a stage 3. Had he been on Hospice, they would have treated for infection and comfort, but the aggressive wound care treatment that he has been receiving from Home Health is far and above what he would receive from Hospice. I don't believe that he's at the "6 month" stage yet, although he is bedridden with other issues. I believe that the pressure sore treatment that Home Health is providing (and at the Hospital, as well) IS "pain control therapy". Without it he was in a great deal of pain from the sore, and with the more aggressive treatment it's been healing a bit more every day.

That said, I will also say that I have a relief caregiver who is here with me a lot. I have respite... many do not. Neither parent is at the point where they need "comfort measures" above and beyond what is being given now. If/when that time comes, Hospice will be here. If I didn't have Home Health, I would be in BAD shape. They help me determine what symptoms and reactions can be indicators of problems. I have them to ask questions of... and I quiz the poor nurse at every visit. If I didn't have access to Home Health or a private pay caregiver, I would definitely have Hospice on board.

Also, Home Health has provided durable medical equipment and wound dressing items. Wound care dressing supplies are quite expensive. Home Health does NOT provide things like pads, underwear, washcloths and other necessities, so we pay for these ourselves.

Martha,
Maybe it's the different hospice, but, I only signed my husband into hospice on Monday and the social worker is already asking for the 5 day respite care. She said I should have it maybe next week. No mention of after 6 months.
I can take longer than the five days if I want but I would have to pay for the extra days.

In the mean time, she is getting some volunteer help in so I can take 3-4 hours out on my own. I guess this is availabe as much as needed. I'll also be able to leave for the hour and half that the aide is here. That will be three times a week.

Everything is going so smooth that it's hard to believe. They delivered his new wheel chair yesterday and a hugh box of diapers. They don't furnish the briefs so if I want them I have to buy them myself. The nurse made a special trip out yesterday on her day off to bring me a box of wipes and a box of latex gloves.

NDuke, you don't have to wait for the "6 month" period to be accepted by hospice. But you're right you do need Medicare part A

ttt

Quick question: why don't some people have Medicare A? My father has Medicare
A and B........just wondering why some folks don't????
Another question, if anyone can answer this: My Dad was also just placed on
hospice, in part due to this thread; it got me moving to ask the NH Dr. again
to please refer my Dad....everything seems decent so far; the chaplain has
called me, and spent quite a bit of time encouraging me. The social worker
has called to let me know she's available to meet w/ me. The nurse (RN)
has visited and is viting again today; I noticed someone else on this
thread said "full reports" are given to them by the nurse. I don't get
that; the nurse seems very nice, and has told me I could call her anytime;
yet, she does NOT call me to give me ANY report after seeing my Dad.
It is "pushing" her to ask her to call me after each visit? I'd like it
if she'd call and report how the visit went. Some days I'm "full of vinegar"
and can call anybody/everybody to ask...other days, like today, I feel I'm
bothering people. Thanks!

"Quick question: why don't some people have Medicare A? My father has Medicare
A and B........just wondering why some folks don't????"

Not sure about others, but my parents both retired from the government. I believe initially that they received NO Medicare at all. But their government insurance covered everything better than Medicare anyway. Then at some point their coverage changed and they were made eligible for Medicare and "given" Medicare part B. To take part A would have involved a pretty costly premium for a retired individual (not sure the exact amount, but today it would be somewhere between $400-500/month each) so they only got the B and their insurance had reverted to a "Medigap" policy.

As to the Hospice question... I see absolutely no reason why you can't ask them to be proactive about reporting to you. Certainly it never hurts to explain what you want.

Thanks NDuke,
I've heard previously that others didn't have Medicare A and wondered
why. Thats sad your parents would've had to pay a high premium in
order to get it. Doesn't seem fair, especially since they worked
for the government. Yes, I NEED to be proactive where the
hospice is concerned. I'm hoping tomorrow is "one of those days"
where I'm not afraid to be pushy!

Matnet4,
If you have any problems contact the Hospice Director in your area, but only after reading the National Hospice Guidelines. This way if they tell you something incorrect you will have something you can read back to them that shows them you know more than they realize.

Matnet4,
I meant to say read the National Hospice Guidelines for eligiblity for Alzheimer patients, they are quite different so I found out.

Hospice coverage varies from state to state. Also different hospices have different funding sources. Some are for-profit and some are non-profit.

I've had a great experience with the local hospice team out of Long Branch NJ. I know all I need to do is call 24/7 and someone is there for me, my MIL and the family. Last week I called and the nurse came within 1.5 hours! They always make me feel like it is their pleasure to hear from me.

We called in hospice when Mom could no longer place any weight on her feet. I'm glad they did. We felt so paralyzed at the time as to what we could do to continue her care at home. Within 24 hours of contacting the hospice care team, we felt empowered in her care again.

Hospice is for end of life care. Generally, it for 6 months or less but I have taken care of many hospice patients longer. It is "comfort care". It is, also, care for the entire family.
I think it is very appropriate for the nurse to call you after each visit. You just need to be reachable!! Remember, hospice has on-call nurses and services 24/7!!
It is a great service and they do wonderful work! They are angels in clothing!

Peace and Hope,

In California (I noticed you were from Riverside) Hospice covers diapers, medication for comfort (but watch out, they like to give the cheapest ones like Haldol), bathing, a chaplain, social worker ... and many other things. Hospices vary, so check them out before you blindly go into one. Good luck!

Kendal,
do you use the Visiting nurses of Central Jersey? I had called a few, we have
a local one which is great, but I went w/ one that someone referred. Seems
good so far; they really are an extra pair of hands/eyes to care for our
LO's, especially in a NH setting. I do wish I'd known Dad qualified BEFORE
I placed him. I think it would've been the "answer" I needed to keeping
him here a while longer. I know I can't go back, but I do strongly
encourage those caregivers who NEED help (and who doesn't? ) to contact
hospice and have your LO evaluated to see if they qualify.

Hi Kendal,
I won't cover what other folks have already said, and said well. You now know the basics of hospice, but also realize that depending on where you live, you maybe have more than one hospice in your area available to you. I know in the Atlanta area there are 5--where I am, there are now 3. They all offer something slightly different--some don't have bereavement counseling, some offer more services throughout the week, most have a hospice "hospital" if you choose not to do a home passing.

I chose a home passing for my mom with the aid of hospice. I had to INSIST to my mother's doctor that she was ready. She lasted about 10 weeks from that point. I had asked before, but mother had a way of perking up at the doctor's, which was aggravating, but I had seen too many dips at home and knew she was forgetting how to eat/swallow. I chose against a feeding tube--a personal decision.

I now work with many hospice organizations giving them insight into the caregiver's mind/heart and to meet the needs of an Alzheimer's family.

I wish you well. This is a hard transition, I know.

~Carol O'Dell

I just recently called in hospice for Mom. She was not eating, was sleeping all night and most of the day. I'm not sure if she is just fighting a UTI (reading those posts too).

I had refused hospice previously because I had preconceived notions about them not allowing me to treat her. I asked the nurse about this and she told me it's basically up to me if I wanted to treat or not treat illness. She told me to post Mom's Do Not Resuscitate Order on the fridge. She also told me that if I felt the urge to call 911 to call them first and they could maybe tell me what's happening and give me options. If 911 takes her to the hospital she has to go off hospice until she comes home.

Mom and I had a conversation once, after she was demented but still able to communicate with me. We re-discussed the Do Not Resuscitate Order and I determined that she wanted to be treated for illness, she just did not want to be revived if her heart stopped and she did not want to be kept alive on ventilators etc. So I told the nurse that we WILL treat all illness. Presently she is ordering antibiotics for urinary tract infection, we think. Mom's urine has been very brown. Not sure if she is having kidney failure.
She is also ordering her a hospital bed as she can no longer "escape" the bed, at least at this time.

As for calling and interviewing various Hospice providers, you are lucky if you have that option. It took me 3 weeks to find a Hospice that will come to my location. I live in a remote area, about a half our from the nearest town (different county) and providers have to cross through that one county to get back into the provider county to get to me. Crazy!
I finally called a friend of a friend who used to be a home health aide and she told me the name of the only hospice that provides care out here.

The nurse has told me they provide all of the durable medical equipment at no cost. They will switch out her wheelchair (which we are paying a co-pay for), get her a bed, a bed alarm so I know if she is trying to get out of bed, and possibly train me for a Hoyer Lift so I can get her out of bed and into her wheelchair for meals.

I was mistakenly told that Mom had to come off Secure Horizons and go onto Medicare. The nurse told me that Secure Horizons is just managed Medicare and that Mom will stay on it.

Mom's doctor will remain the one that she signed up under with Secure Horizons but that the doctor can choose to defer to the Hospice doctor to prescribe etc.

The nurse also told me that the pharmacy (1 hour away) will DELIVER the meds. Yikes! This is wonderful but it's hard for me not to feel guilty for these services.

I am excited to read about the 5 day respite. I am going to have to ask her about that. My husband has taken my teenagers on vacation the last 4 years to Havasu without me. It would be great to be able to join them this year. Hope this respite service is true for my area too.

The nurse told me I can have a social worker help me plan the funeral, a chaplain for counseling and to pray with mom or with me, an aide to bathe her twice a week and that she, the nurse will check her once a week and also bring me gloves, wipes and things as needed. There has been no mention of diapers. Is that standard procedure for them to provide diapers? Should I ask?

I will try to post more details about Hospice as I learn.

ttt for mdamom

to the top for mdamom

Kathie M.,

'The hospice that has been providing care for my Dad has been awesome and very helpful. One thing our hospice provides is a music thearpist that comes weekly. He spends about a hour playing his guitar and singing all my Dads favorite songs. Sometimes my Dad can't even keep his eyes open but when you watch him his little foot will be keeping time to the music. It is the most amazing thing to watch. I hope everyone else has this service because it truly is a big part of the hospice blessing for us.'


WOW - I love that!!! What Hospice are you using? I'm in Charleston, SC and we are using Southern Care... They are ok, but they have no volunteers, or any extras like music therapy, pet therapy, or anything like that.

Jane