What can you do when your aging parent has a sharp mind but the doctors agree that there is not much more that can be done for her?

My mom was on hospice for 16 months. I saw the good, the bad, and the ugly of hospice. It was a not for profit hospice, but as Mom lingered on and on I definitely got some attitude from the office, though not from her team. They definitely liked using the Medicare excuse. They made me mad plenty of times especially because mom was totally bed bound, was not going to get any better and was terminal, but was not actively dying and yet they wanted to kick her off. Her doctor still certified her as terminal, yet they had no problems irking me about it. Sometimes I felt like they saw me as a lowly unpaid servant and they could vent on me - they did not seem to see me as an exhausted daughter in her early 30's who was losing her mother. I did end up taking her off of hospice - mostly because I had enough of them to do me a life time and I was certain my life expectancy had been decreased because of the experience. She lived another 6 months after I took her off. She was just so sick - throwing up a lot - I was fed up with her not getting the comfort treatment she needed. The problem that everyone overlooked was she had been on prednisone without an anti-reflux medicine for most of the 16 months (I did not even realize she needed it.) That steroid was eating up her stomach. So her suffering could have been eased very simply, but because hospice was acting as if there was nothing that could be done and we should just accept she was dying. They get into this mind frame because they do not want to be aggressive and tend overlook simple solutions. They were good at day to day type care, but when it came to any crisis stuff it was a good thing I had a background in medicine - but there were still days I did not think I knew enough.

Anyway, DT, I am glad your mom has such a wise and caring doctor and son, too. Even if hospice might be able to get out of paying for the transfusions, they cannot keep her from getting them. There is a way to go off of hospice and then go back on. Also she can still take her regular medications while on hospice. They only have to pay for the medicines which are related to the terminal diagnosis. Insulin was even paid for because the steroid my mom was on to keep the edema down in her brain from the tumor caused her blood sugar to shoot up. The steroid was a comfort measure - to keep the swelling down and prevent pain. If she had not had insulin, she would have gone into a diabetic coma and died. I also required them to treat UTI's and once she had pneumonia - I requested Levaquin and she pulled through. I believed in treating treatable infections and that it was a comfort measure. As long as she responded to the treatments I believed that she was not actively dying and should be treated. When it was her time, I had no problem stopping treatments and just "knew" when to say no more. Treating infections was also part of her living will she had made before appointing me as her MPOA plus she had prepared me for years for what she wanted. I also always talked to her about the decisions and let her make them as long as she could. Some in hospice believe in no treatments and stopping all medicines unless they are for comfort reasons, but they need to respect that each individual should be able to decide if and when they discontinue their medications even when they are on hospice. From a medical policy angle, hospice does allow for a lot more than some hospices want to deliver and some do get by with this because many families do not know any better and they are so overwhelmed they are not for sure where to turn.

A good resource I found on line was Patient's Hospice Alliance.

I had a good talk with mom's doctor today, he related that the duty of hospice is to see that the patient is comfortable in the final days, and may decide to withold transfusions if they believe them to be "aggressive care", putting the blame on Medicare. Patients have been known to be dismissed by hospice if they linger too long. Dr says he will never stop proscribing transfusions as long as they are needed, and it is our choice when to stop or even to continue on with hospice. I think I scared them from the very beginning I told them that I will insist on whatever care they can give her, even transfusions, and I will not just sit by and let her waste away if something can be done. If nothing can be done, that is another story that we will deal with when the time comes. It must have been horrible for you to be forced to simply stand by and not be allowed any say in the matter, I do have POA and will not allow them that easy decision. We are fortunate in mom's doctor, he is a great guy.

DT this was like reading a repeat of my mom's condition. Just don't let what happen to my mom happen to yours. Had the same diagnosis as your mom. Strong mind. 97 years old and the doctors couldn't believe her strong will and mind. When her platelets dropped they did platelet replacement etc. and then said medicare won't allow anymore transfusions. She had double insurance besides medicare but medicare was first. So they called a family meeting consisting of me and said nothing else could be done. I did not have medical power and they took over because she was in palliative care and kept hollering not from pain but fear. They said she was in sundowners and took her out of this world with morphine. Kept giving her morphine until she was in a medical coma. I had left the room to go to admissions to get her out and they took her out so quickly I didn't know what had happened and when I returned she took her last breath. I finally quit beating up on myself and keep reminding myself her mind was so strong she wanted no one to take over. They also told me because we had chosen hospice there would be no more life saving measures. It sounds you are on top of things.

Thanks marie's mom for reminding me - the verbal history thing is something I have always been meaning to do 'when I get a round tuit'. I have rearranged all of the old photos in separate books as to the eras of her and our family, sometimes they spur memories, just as often they make her sad. I have heard a lot of the stories a hundred times, but there is only so much that she does remember. As to sparking memories, it largely a matter of interest, if you are interested you remember better, mom just was not interested in a lot of things that did not actually pertain to her and the house, she is quite narcissisic in her way, and she cannot really relate some things. See above footnote to eddie about solipsism. As to her recipes, it is hard for her to even relate them, she "just does it". I do keep tryin', though.

before my Mom's Alzheimer's advanced to the point that she was no longer cognizant of the world around her, I often engaged her in questions about what she wanted done re her estate when the time came. She LOVED this, and could talk about it everyday.

Also, I did an oral history (keeping a notebook), asking specific questions about her childhood, her siblings, her neighbors, jobs, parents and grandparents. This too she loved. Everyone has a story to tell and life lessons to teach.

How about photos? Could you put together a photo book of family members or places she has lived or visited? I was able to "Google Earth" some photos of homes where Mom had lived, schools she had attended, even a boAt she took to cross the Pacific after the war . . .is she well enough to talk and perhaps record some memories?

There are also 'adult coloring books' that mom enjoyed using for a while. I would color with her. We put these on the wall in her room.

A footnote: I was amazed with my Hospice experience because none of the people who came to the house in Moms last 3 weeks of life ever did the old "when you're better" routine. I never did that with Mom and it would irk me to no end when others did. They were warm, compassionate, yet absolutely realistic - thus I saw them as extensions of myself, caring for Mom exactly as I had done.

I am so sorry, DT, that you and your Mom are going through this. My dad had ITP (low platelet counts of unknown reason) among other things and had nosebleeds, GI bleeds, and kidney failure. Have the doctors suggested IVIG treatments (intravenous immunoglobulin) or steroids?

She is very fortunate to have you as her son. When her time comes in someway and somehow she will be ready and at peace in her own way. Just as she has had her own unique outlook on life, she will have her own unique ending story - one that you will be able to appreciate like no one else can. I wish you both good things during the time you have left together - and I know that there can be good things even in the last days of life.

Thank you, Eddie - I respect you and your journey. On another thread I said that I hope when it comes my time that someone just hits me over the head with a mallet. Just take me behind the barn and shoot me, roll me into a hole and cover me up. That's why my only real luxury these days is to work out twice a week with a trainer, take a bunch of vitamins and eat sensably so that I can keep going until I just drop in the traces LOL. Neither mom nor I are comfortable with the nurses and social workers who come into the house and try to get as close as possible to her and talk in that terrible gentle way they have that they do not really realize is very partronizing and really not as comforting as they think. (I have noticed for some time that when I take her someplace in the wheelchair, like to the doctor's office, that the receptionist or nurse will often address their comments and questions to me and not to her, assuming that she is not in her right mind, I guess.) I know that they are trying to establish intimacy and trust, but sometimes people just do not like to be breathed on or touched unnecessarily. Politeness and consideration is the only necessity, in nursing and in life in general. It has really always been a family tradition (not a good one) that what is distasteful or uncomfortable is just not mentioned, we are comfortable with that so I just go about business as usual, trying to keep her comfortable and I try to be patient with her and try to explain things as well as I can, though mom has never been whachacall a deep thinker, she was more motorized than anything, so her incapacity is the worst thing for her and she tends to lash out occasionally. She got the gist of the conversation with the doctor well enough, but she has been expecting to be dead by morning for the last 5 years or so anyway, I have heard it ad nausium. I have told her that I do not understand how she has lived so long by being so negative, but again, she is comfortable with that, though it has not made My life pleasant. As for me, a goodly dose of Stoic never hurt anyone, being an eccentric and proud of it, that has always worked for me too. Keep that thought while dealing with your mom. Footnote - I was looking up a word in the dictionary once, and my eye fell upon an interesting word - 'solipsism' - the theory that only the knowledge of self is possible and the self is the only thing really existant and that reality itself is subjective. It struck me because that is really my mom.

DT:

As my Dad quickly faded in 1997, the doctors at Columbia-Presbyterian Hosp. whispered to me "There isn't much we can do for him. ... Take him home and make him as comfortable as possible." Back at his bedside I said "Doctor said you're well enough to finish your recovery at home." Dad asked "What did I tell you about lying? ... When you tell the truth you don't have to remember anything, right?" "I heard what he said, that SOB." Pointing at a red-haired nurse, he said "I'm gonna miss her. ... I might be dying but I'm still breathing."

So I took him home and made him comfortable for about 2 months. During the day, a cat and 3 pitbulls kept him company. At night, myself and my twin sons. He didn't want to be surrounded by "fakes" telling him "When you get back on your feet," "Looking good Mr. E.," etc.. He poked fun at that German actress famous for "I vant to be alone!," watch the Bronx street madness from the window, and smiled.

I walked around with a teflon attitude as if nothing hurt me; trying to be strong and stoic. ... Little did I know he was the one trying to make me comfortable -- and ready.

We're here for you DT. ... We'll always be here. Remember that.

PS - She sits in her chair with her little dog sleeping on her lap.

igloo - Thank you for your suggestions. I googled the organizations you mention and none of them are anywhere near this area. In the long run it does not matter anyway, as mom would prefer to stay here. As I indicated, her home has been her only field of expression and to take her out of it unless she were so poorly off medically that she could not get the care she needs is just something she would not like any better than the way things are. She does not crave company, in fact, she tries to discourge it and does not want to be bothered. As far as things like books on tape, good suggestion I have already thought of, but one of her problems is that she becomes confused even while watching a TV show, poetry or being read a novel without the visual reference would be beyond her. She never did like reading, and she has little imagination. If given her choice (like when I am able to step out for awhile) she will just switch to the food channel and watch them cook. Nothing much else interests her. There is a radio station that plays music from the 50's and 60's on Saturday and the big band era on Sunday, which you would think she would like because it is from her era. I like them too, and listen every weekend, but if I have to go out while they are on she turns the radio off, She likes to sit in a quiet house. Even the hospital drives her crazy with the commotion all around. I am afraid there is nothing I can do to entertain her at all, she does not have dimentia, but she will sit for an hour in her chair doing nothing, and it can only be by her own choice. She is most at peace at home, though, that is why I am glad for the in-home hospice care. Dad died in the nursing home after only 3 months, so nursing homes mean death to her. But thanks for the suggestions for distractions. I guess I am her only main distraction.

DT - oh so hard for your mom. What about trying hospice again? If that is an option that you all want to reconsider, is Vitas or Compassus in your area?. We went thru hospice evaluation with my mom - she rallied and presto! no hospice - but in the process, I contacted several. Some were good, some had no clue but
were all about their particular view of Christianity. Vitas, Compassus & Odessey seemed to have a more holistic approach without wanting to befriend my mom and us, the family. It's hard to explain, the other hospices reminded me of that fake friendship that realtors and bankers do. Now Vitas was especially good as they had a free-standing facility so that if the day came that the NH based hospice wasn't appropriate, my mom could get moved there from her NH for the final stay. The free-standing hospice was great in it's simplicity and without the frenzy and bad lighting of the NH or hospital. Really it reminded me of staying at a Lowe's while the NH is more like an old Comfort Inn. I know I'd rather be at a hospice than an NH or hospital for the end stage.

Yes, I know the frustration of not having your doc have "privledges" at the hospital but that is the system. Without a universal policy in the US, that ain't changin'.

What about running a book on tape for her? Most libraries have them - even old-school cassette ones. What's nice is that you can be there and do other things while the both of you are listening to the book. Plus it gives you something to talk about afterwards. Your mom still pretty cognitive, right? So she might like Agatha Christie as almost all her books are on tape and they are short and the accents are LOL good. My mom liked "Spiritual gardening" by Judith Handelsman. Just about every subject is on tape, look for short ones like Caroline Kennedy's poetry collection or short story ones that are on 1 or 2 CD's. If she's into it, there is the Caedmon Collection of short stories & poetry, most of which are old LP recordings from the 50's now put on CD, many read by the author like Welty, these are gems.

My MIL passed away in hospice (Odessey) in May from organ failure from wound sepsis after surgery. She went from ICU to a separate hospice floor. It wasn't traumatic or dramatic, you knew things were shutting down and it was a matter of time. She had a DNR so there was no issues of going back into surgery or doing another newer/stronger Rx. The staff was great but it is a whole different mindset for hospice whether it's at home or in a facility. What struck me was the flexibility toward the situation that hospice provided. it was very much if that makes them happy or comfortable then go ahead. Hope you can find a situation that is tranquil for your mom and your family.