Mom is 94, her body does not manufacture hemoglobin as it should anymore - she only has one kidney that is still functioning and her bone marrow is not doing it's bit. Last year she had to have transfusions about every 4 weeks, then it became every 3 weeks, then two weeks, her doctor told me some weeks ago that the treatments will eventually become useless. This past weekend she developed a nosebleed that would not stop and her platelet level nearly dropped out of sight. They gave her at least 8 units of pure platelets over the weekend and into Monday but her platelet level did not rise much at all. Resident doctor at hospital (in their wisdom the hospital now has it's own doctors and if your general care doctor does not chose to be a part of the hospital staff, they are not allowed to attend their own patient while admitted) and her specialist that diagnosed the original problem have both said that they can do nothing more for her "It is like trying to fill a sink with no stopper" - she will continue to get weaker until ????. We have an appointment with her general provider next week. How do I approch dealing with her imminent death as far as keeping her spirit level up. Don't worry about me, I have known this was coming for some time, I will deal with it in my own way, but I am concerned that she go out as quietly as possible. PS - it has been hard to keep her entertained for some time as she cannot do much of the things she has always liked to do, cooking, cleaning, etc. she is not much interested in reading or TV, she used to do crosswords but has lost interest in that even, she can't crochet because of her arthritic fingers, can't walk very well, and has no particular religious convictions or affiliations. Hospice has been very good about offering to help with case workers and social services, but she does not even like strangers trying to entertain her. In fact, one of the biggest mistakes social workers and even nurses make is to try and get physically too close to a patient. I know they are trying to establish a sincere, intimate and helpful bond, but some people do not like to be touched or breathed on. They are strangers, not family. I must admit, I would not even like that.
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.
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.
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.
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.
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.