Hospice

[Rose Pink]

I thought hospice was for those with a terminal illness with a diagnosis of less than 6 months left to live. A visit to the Medicare website also gives those parameters. Yesterday, a visiting nurse told me that the 6 month rule doesn't apply. A patient just has to have a condition they will not recover from. In Dad's case, that would be dementia, Parkinson's, etc, etc, but I don't think any of those are going to cause his demise in the next 6 months.

The RN said he could get more home health services on hospice but that he cannot call 911 or go to a hospital. He would call the hospice service and go to their inpatient facility instead if he needed care that couldn't be provided at home.

I would like to hear from Tuggers what they know about hospice through Medicare and whether you think it is a good idea or not. I am also going to consult with Dad's gerontologist next week. Thanks.

 

[pcgirl54]

My mom had hospice through Medicare that was approved by her doctor in her home and had Alzheimers. Because my dad waited so long he could not opt for other elder services that would have made both their lives easier.

I cannot attest to how early you can ask for this because my mom died 4 months later at home as she wanted. She had the disease for 12yrs.

Hospice is the most wonderful service around and they also provide beds and other services including some meds.

You do need to always call them first.

Hope you can do this Rose Pink.

Take care!

 

[Luanne]

I am only familiar with my parents' experience, and somewhat hazy about the details. My mother opted for hospice care for my father who was in the end stages of pancreatic cancer. She wanted him to be able to be at home. I'm sure it must have been through Medicare. My mother was extremely grateful, and very impressed with the care given. They even provided someone to come in so that she could get out to run errands, or just take some time for herself. She didn't have enough good things to say about hospice.

 

[IngridN]

A friend of mine's father is also receiving hospice services due to dementia. He resides in a board and care or similar type of home.

I will be seeing her this Sunday and can get more details. PM me if you would like me to get some more information for you.

Ingrid

 

[pjrose]

Can't answer your question, but sending hugs your way

 

[pedro47]

My Father was a hospice patient under the care of the Portsmouth Naval Regional Hospital, Portsmouth, VA. All I can say is that the in-home health care he received was outstanding to the very end. My advice would be to check with your local hospital hospice support center.

 

[riverdees05]

My Mother is in Hospice while she lives in a Memory Care facility. About four months ago, she had an UT Infections and almost died. We worked with the Doctor to obtain Hospice because of her condition and being in the later stages of dementia. There is a criteria that Medicare requires the Hospice organization uses to determine if she still qualifies. She has had two reviews and still meets the criteria. She was doing better, but just this week has taken a turn for the worse. Hospice does provide certain medications, equipment, etc. But as mentioned before the patients give up certain Medicare items - like emergency room visits, etc. The program is aimed at making the remaining days confortable, not to extend life. It is a great service they have a nurse come in a couple of times a week, a nurse aid come in once a week, and other help. It has been a God sent for us and others.

How bad is the Parkinson's? My Dad had that and it is terrible and the medicine they take can really be hard on their mind.

Our prayers and thoughts are with you.

 

[Texasbelle]

A friend used hospice and improved so much, due to more intense care, she was out of hospice for a time and then back in closer to her death. On the other hand, our son was in hospice and the agreement was nothing would be done to treat any medical condition that arose. He was kept comfortable and died within a week. He chose not to be at home, but we saw him daily. The hospice he was in was privately funded. The government funded hospices are a godsend and can be very good especially for the elderly who have not purchased insurance for "nursing homes."

 

[suesam]

I just attended a seminar on hospice yesterday because I am a social worker for an assisted living management company. It sounded like 6 months was still the time guideline from that seminar. The Dr. can can re certify the hospice recipient after 6 months if the Dr. agrees to do so, but I would ask the Dr. about your dad being hospice eligible because they said some agencies are getting audited due to having patients in hospice for years and years. Also... another thing I learned, not all hospice agencies provide the same services. Make sure you talk to several and shop around. For example, some may provide massage therapy and some may not. Pet therapy, music therapy, could be provided but are not required services so some will provide it, some will not. I personally would think massage therapy and music therapy would be great and would want it for my loved one.

Hospice through Medicare is awesome when it is done by a great agency and appropriate. I know many, many families and individuals who have been so thankful to have the hospice program to assist them at such a difficult time.

Sue

 

[Twinkstarr]

We used our locally privately funded hospice for my mother when her cancer had spread to her liver(she didn't want to do chemo, and there was a small chance that it would give her an extra 6 months).

She chose to go to their location and WOW were they great. She met quite a few people when she was up and about. One of the other patients family members did a wonderful sketch of mom. They called promptly when they thought she wasn't going to make it through the day. DH was out of town, they had someone watch the kids(one was in K, the other 18 months). They have a cafeteria and also a full kitchen and living room with tv, toys etc.

One of the grief counselors, drove over and talked my sister into coming and saying good bye(she's doesn't handle this stuff well).

I can't say how much I appreciated the care my mom was given(her night nurses were her special friends, always made sure she was pencilled in for the whirpool tub every night). The staff(some paid, some volunteers) made that last day of my mom's life a lot less worrisome for me. They fed the kids lunch and entertained them. Would have taken the eldest to PM K and picked him up if necessary(he wanted to go). Got my sister over, which I was , but they did it.

We just went through this all again last month with my 90yr old MIL. She had a major stroke and while she was only there about 11 days(my mom about a month), they did a wonderful job with her also.

I've met other patients' family members and whether it was dementia, cancer, ALS, or some other condition, it seems once you get hospice involved it just takes the weight of the world off your shoulders. Besides the care given to the patient, the understanding of what you as a loved one are going through is priceless.

 

[Linda74]

I have used hospice twice; for my brother ten years ago and for my wonderful husband 7 months ago. My brother died in the Hospice facility in Branford, Ct. My husband died at home. They were wonderful. They have been so good to me with the grieving process and the widow group they ran was such a help. My Dad died of Alzheimers 10 years ago as well. At the time, we did not know that he might have been eligible. It surely wouldhave made life easier. We only called Hospice the last two days after the visiting nurse said he was actively dying.

 

[T_R_Oglodyte]

My mother died several weeks ago after being hospitalized in mid-June. She was in the hospital for about five days, then was discharged with hospice care orders signed by the attending physician.

When we investigating options for her post-hospital care, we discussed with hospice how long their services were available. The reply was, essentially, indefinitely. The hospice nurse said she knew of patients who had received hospice services for as long as two years.

She indicated the only criteria were that there must be a diagnosis of a terminal condition and that the only treatment provided is comfort care, not therapeutic care.

Also, just to be sure you are aware, Medicare will not pay for both nursing home care and hospice care. Those two are exclusive of each other.

 

[Rose Pink]

Thanks to all of you for sharing your thoughts and experiences.

I've promised Dad that he won't go to a nursing home. I hope I will not have to break that promise. Hospice care in his own home would be much more acceptable to him.

My concern is that, although he has chronic illnesses, I have not thought of them as "terminal." He could live another five years or die tonight. Who knows? What kind of message will he internalize if we put him in hospice care? I suppose we don't have to say much to him about it but we have another family member who probably would say something.

The enticement is more help for him in his home. Of course, he doesn't think he needs it but he does. I admit that I am the one who needs it. I haven't been doing a very good job of running my own household lately and add to that the extra work of running his and I am overwhelmed. I simply cannot clean his house and do his laundry and run his errands. I live at least 20 minutes from him (40 minute round trip if there is no traffic--and there usually is) and I just can't go out there every day although he likes the company.

I am exhausted from two trips to the ER this week--one for him and one for my daughter. Of course, they happen at night so I don't get home until 2 or 3 in the morning.

I brought about 6 large garbage bags full of his clothes home with me to launder. My fingers became black just going through one bag--and these were his "clean" clothes! Most of them went back into the bag and will be taken to our local equivalent of Goodwill--they can at least use the buttons and zippers. The fabric gets chopped up and made into some sort of felt.

 

[T_R_Oglodyte]

The enticement is more help for him in his home.

Hospice does not provide assisted home care. They may provide some comfort services, such as massages, hair and nail care, etc. Hospice also takes responsibility for managing medications (comfort medicines only). Typically someone associated with hospice will visit two or three times per week.

So if you are looking for help for him in his home, you won't get that from hospice.

 

[Rose Pink]

Hospice does not provide assisted home care. They may provide some comfort services, such as massages, hair and nail care, etc. Hospice also takes responsibility for managing medications (comfort medicines only). Typically someone associated with hospice will visit two or three times per week.

So if you are looking for help for him in his home, you won't get that from hospice.

Thanks, Steve. I must not have heard the RN correctly. I'll check into further and talk with his doctor as well. But even having someone visit him two or three times a week would be helpful. He needs the interaction.

 

[pcgirl54]

Rose

Through Hospice my mother had CNA come everyday 7 days a week. It starts out light and then increases as they fail. Also had a social worker and a chaplin come once a month or more. Nurse called or was there once a week. It was wonderful and helped so so much.

You can also get help from hospice volunteers who will come and do head rubs,clean or housesit so you can get out and do errands. They were so good to my mom that I became a volunteer myself. I have not done this in a long time.

Call Elder services in your town and ask Dad's doc what is available to you and do go buy this book"The 36 hr Day" Can get it on half.com.

My mother feared nursing homes and I recall when I was young her asking me never to send her to one. My Dad who is now 91 took care of her in their home. It was not easy but he is so proud that he did this for his wife. He misses her so. She died 7 years ago.

Do this for your Dad it's quite a wonderful thing at a most difficult time of life. It brings peace and grace to the dying process.

Rose I just recalled that the doc said they could renew it in 6 month intervals if warranted.

 

[Liz Wolf-Spada]

My dad also had Parkinson's, (originally, I think, misdiagnosed about 12 years ago as "essential tremors'). He had been unable to move around by himself for well over a year and finally got so he was really unable to do much at all. He died last September and in the summer, he seemed noticeably weaker and had trouble eating. Eventually, he had problems swallowing. We got hospice care at home for him and he only lived for maybe a week or two. There were wonderful. He had long term care insurance, so had already had full time live in help for at least 8 years.
Liz

 

[T_R_Oglodyte]

Thanks, Steve. I must not have heard the RN correctly. I'll check into further and talk with his doctor as well. But even having someone visit him two or three times a week would be helpful. He needs the interaction.

We went through that specific discussion when my Mom was coming out of the hospital. It was clear she couldn't return to her condo without almost 24-hr care. Our other options were moving her in with one of us kids or a nursing home. We discussed what services would be available through hospice, and hospice was quite clear that they did not provide living assistance. Their role was to provide support within whatever living arrangement was provided.

 

[MuranoJo]

I lost my wonderful aunt, my mentor, one of my best friends, to congestive heart failure over a year ago. She lived about 5 hours away from me and had tons of wonderful friends.

When her friends recommended Hospice, I related that to caring for someone who is living out his/her last few remaining months or weeks. At first, I fought the concept, as I was in denial about the whole situation. But I can tell you, they were a major help, very professional, very caring, kept me updated when I wasn't there, etc., and this was even in a smaller town. They were not there full-time at all, I think every day with someone checking in for vitals, then the nurse 3x a week, and a pastor once a week. (I chuckle to remember my aunt being ticked off that he wasn't her religion.)

I know nothing of extended long-term benefits such as Ahlzeimer's, but wanted to relate my positive experiences. They were great.

 

[pgnewarkboy]

I have all these wonderful posts about the excquisite loving care provided by hospice. We are very lucky that there are compassionate people to work at these very difficult jobs for extremely low wages and often no benefits. I personally know such people. Unfortuantely many are one illness, accident, car repair, from homelessness.

 

[SueDonJ]

Hospice care was wonderful for my mom when she was diagnosed with cancer twenty years ago. When they found it, it had already spread to her liver and we lost her just four short weeks later. The last two weeks she was able to be at home, where she wanted to be, and hospice workers came every day. They pretty much oversaw everything about her care as well as what we were doing - one sister who is a nurse was dispensing her meds, some of my sisters were taking care of her bathing and comfort needs, others of us were taking care of the meals and house ...

We were all fairly young, three were still living at home with dad. It was a very difficult time but hospice helped us to make the very best of that very bad situation. They offer so much compassion - it's amazing the capacity they have for caring. The most surprising thing was when we lost our dad 11 months after our mom, three of mom's hospice workers came together to dad's wake and funeral when they saw the notice in the paper. Amazing.

 

[Zac495]

I have no experience with hospice, but I wanted to say that I read all of your heart warming stories with tears in my eyes. Sending out love and thoughts to those of you going through this - and those who already lost a loved one.

 

[Rose Pink]

.... some agencies are getting audited due to having patients in hospice for years and years. ....
Sue

I spoke with my family doctor today and he said hospice is wonderful but also said that home health agencies that also provide hospice should not be the ones qualifying a person for hospice. They get more money from medicare when a patient is placed in hospice so that gives them an incentive to place people who really should not qualify. My doctor got upset and said it is just another form of medicare fraud. His thoughts are that the state should have an independent nurse practitioner be the one who assesses whether a patient meets hospice qualifications and not the treating agency. I think he has a good point. I will speak with Dad's gerontologist next week as planned to see what he thinks.

If I felt comfortable about whether Dad qualifies, I would feel much better. I do not want to be in the position of even hinting at fraud. None of his doctors have ever said Dad had only six months to live.

 

[suesam]

RosePink,

I was kind of concerned about the way the hospice nurse marketed this to you myself. The speaker at our seminar said that hospice gets paid $137 a day, not per visit. Iowa is notoriously LOW in Medicare payments.In your state they probably get paid a lot more. This $137 a day is paid to the agency whether or not they come to visit. Once a person is deemed eligible the pay starts. The service usually starts out light and increases when the person is actively dying and the family needs more support.

So if your loved one only needs a bath twice a week and a nurse comes every two weeks..... and this goes on for 3 years..... wow that is great pay. Unfortunately it is our tax payer dollars........
Hospice is a great service, it just has to be done appropriately and unfortunately there are businesses out there who have abused it.


Your initial instincts were right on....... unfortunately.
Sue

 

[Patri]

I had no idea hospice gets paid. The people who work for it are volunteers, or so I thought. I have known people who do it for a few years (the turnover rate is understandably high). I thought it was just a compassionate public service.