Checking Out

Manifesto

The World Federation of Right to Die Societies (an international nongovernmental organization) is aware of the increasing concern to many individuals over their right to die with dignity. Believing in the rights and freedom of all persons, we affirm this right to die with dignity, meaning in peace and without suffering.

All competent adults - regardless of their nationalities, professions, religious beliefs, and ethical and political views - who are suffering unbearably from incurable illnesses should have the possibility of various choices at the end of their life. Death is unavoidable. We strongly believe that the manner and time of dying should be left to the decision of the individual, assuming such demands do not result in harm to society other than the sadness associated with death.

The voluntarily expressed will of individuals, once they are fully informed of their diagnosis, prognosis and available means of relief, should be respected by all concerned as an expression of intrinsic human rights.

Speaking for myself, I am very pro-choice regarding dieing with dignity. Life doesn't alway allow us to make that choice, however. But if I can, I will...

Choosing Your Own Exit

My mother would have chosen this path, I think, if she hadn’t been so deep in grief. She often felt many of the same things, albeit orignating out of grief, but I don't think that is any less valid, especially in the context of her age, health, and sense of deep loss.

Aunt Pat

From Delphine come these updates on her mother (and our mother's sister), Aunt Pat...

October 5:

Went to the nursing home today to take her to the beauty shop. Got our hair done and went to eat and she ate quite well. Got back to the health care center. And I went to talk to my daughter-in-law who is a registered. Nurse there and in charge of Medical records. Got some bad news. They want to put Mom on "end of life" care. Hospice. I had my choice of using the in-home care at the health care center. Or having outside hospice come to the nursing home. I told her in nursing home care was fine. She said Mom has really been going down hill. They have her in ambulatory care to try keep her active and up but she is refusing to do anything or cooperate when they try to work with her. She is refusing to eat and is rapidly losing weight. Down to 109 lbs. So in hospice she will have a CNA and a nurse assigned to her to check on her more often. Hospice care means that she can refuse anything and does not have to do anything she doesn't want to. Which means she will not have to take her meds if she no longer wants to. If she refuses them several times then they discontinue meds all together which of course Means Mom can have a stroke or a heart attack or whatever. Also means that they do not have to try to get her to eat. If she doesn't want to eat she won't have to. She will no longer be talked into doing anything she does not want to do.

I am waiting for a call from the gal in charge of setting this up. Audrey just told me about it but another gal is in charge of explaining everything to me in full and I imagine will have the paperwork that I will have to sign. Knew this day had to be coming but still hit me in the stomach like someone had whacked me a good one.

October 7:

UPDATE: Saw the lady in charge of Hospice. Was very encouraging. I was very impressed with what Hospice does. Mom will still get full care from nursing home staff but will now have a full team of extra people there just for her. 2 nurses a CNA and 2 other specialists. They not only take care of Mom but support family as well if you need any counseling or whatever.

They are giving Mom so many pills, her 4 or 5 prescription pills, but a handful of supplement vitamins etc. Well Mom often hides her pills because she all her life has had trouble swallowing pills and to see so many overwhelms her and she does know she never used to take that many pills. She lived to 91 without all these supplements and always had excellent health and excellent bones, etc. I tried to talk to the Dr. about cutting out the supplements so all Mom would get is the very necessary pills and with just a few she would take them, but not when they hand her so many, but I never could get the Dr. to answer my calls. I told Hospice this and they have the power to do just what I wanted. So they will get her pill intake reduced so hopefully she will be more willing to take them. Sounds like Mom will be getting much better and more personal care. I guess I never really knew what Hospice meant before but it is a "comfort", "Quality" end of life care. They just do whatever the person wants to make them as comfortable and stress free in their last months as possible. She will no longer have to go to the hospital, have anymore surgeries. Needles, whatever, if she doesn't want to. They have things to give her if any pain occurs just to make her comfortable but no more hospital procedure stress or traumas. She did tell me that by the time a person has declined to the point that they are eligible to go on Hospice that 90% die within 45 days to 3 months. The Hospice is good for 6 months. I asked what happens if she lives beyond 6 months. She said she will be reevaluated and recertified if necessary. Said they did have one lady on Hospice for 2 yrs. But that is very rare.

Since she will be having "extra" people always checking on her I too wondered if I could still take her out so I did ask and she said absolutely we encourage people to take them places as we want them to have complete comfort and quality a life as they can in their last days. So I will still be taking her to the beauty shop for as long as she can still get around. We did go Thurs. And I was amazed as she was walking better than she had for several weeks so I thought she was improving with her ambulatory care but I guess this is all just part of the ending process. They are so good one day and way down the next. Next week she probably won't be able to walk at all.

October 8:

I can also cancel Hospice any time if I feel it isn't working or am unhappy about anything, whatever. But It sure sounded like the way to go for now as I have had so much trouble getting things done the way mom wanted it with just nursing home staff. Like keeping her window curtain open so she can see out as she hates being "closed" in. I have talked til I am blue in the face about that even wrote a note on cloth and pinned it to the curtain saying please leave these curtains open for my Mom and still they are always closed when I go there. Made her a nice little lap quilt with a hand muff on the front that would fit in her wheel chair as she is always so cold and hands freezing all the time and she uses it a lot when she lays down. Puts her little lap quilt on and tucks her hands in the muff and just loves it. Yet every time I go there the little quilt has been tossed aside when they made the bed and is laying on a chair under a bunch of stuff that doesn't even belong to her and she doesn't have her little Muff/quilt. So I am constantly digging that out for her. The biggest problem is they can't keep help there so every time I get someone to do the things that make Mom comfortable they quit and it starts all over again. Hospice sounds like she will have 2 nurses whose names were given to me and a CNA that will be just for Mom so should be the same people all the time. So let's hope.

Quality of Life

My sister Betty took this photo of Mom on a recent visit to see her. She isn't as talkative as she used to be, but she definitely looks like she was enjoying the visit, and the staff had dressed her so nicely.

This past week (after I reminded staff that she was very late for both her opthamology and neurology checkups ... then appointments were made), we found out she not only needs a new eyeglass prescripton, but that she doesn't have her old pair anymore because they were broken recently. We learned this through a voicemail, but no reason was given. They also want to know if we want them to followup on the recommendation of getting a new pair; it was intimated that she doesn't use them so why bother. I definitely feel she should have them. To see much at all, she needs them, especially since her glacouma has obviously worsened. Even if she doesn't read as much as she once did, she often looks through her photo collection, and that is comforting to her. It's the least we can do...

"Growing Old" DVD

How does someone define aging? Is your age in your body or in your mind?

A wonderful new documentary film explores this...

Dementia Diary

"Her world was shrinking, and she was becoming more and more isolated. Those she offended saw only a difficult personality getting worse. No one suspected the demon growing inside of her, the illness that had begun to twist her memories, her judgment, and her emotions..."

Bob Tell writes about his mother as she slips into Dementia, a tale many of us know all too well.

Weary

This past weekend, my sister Sharon from Chicago came to town for a short visit. On Saturday, all three of us daughters met at Eventide to visit Mom.

I arrived first, then Sharon, and finally Betty. While Sharon and I were awaiting Betty, Sharon left the family visiting room to check on something. While she was gone, I started talking with Mom, even though she was dozing and hadn't said anything despite our trying to engage her. I went around back of her wheelchair, and put my arms around her and bent down to talk softly near her ear. I told her how much I missed talking with her and Dad, and how much I loved her, and then just smelled her, and felt her skin next to mine, and was quiet with her. Before I knew it, Sharon was entering the room, and I realized my eyes were moist...I was very glad to have had those few moments alone with her.

Later during the visit, I got down in the front and said to Mom, since you are so tired, I'll get down here to take your picture, half-joking with her. She momentarily lifted her head and looked at me as I shot this photo of her...

Later, as I said goodbye, Mom spoke for the first time, asking did I have to leave, and I explained I would see her soon, and that I loved her, and she responded I love you, too, Trisha...That really made me smile! She did know me after all...

Lifelong Love

It is a fearful thing to love what death can touch
[ Epithet on a New England tombstone ]

This weekend I was listening to this program. A segment featured the lifelong love of Page and Eloise Smith, a couple that died one day apart after spending a lifetime together. Of course, it immediately made me think of my own parents.

I wrote to their son Eliot, the man behind the memorial website, and he responded...

Good Morning Trish,

Thank you so much for reaching out. We are the lucky ones with family legends to live by and deep gifts that enrich us. It has been over 10 years now and I still think of them every day, see things I wish I could show them, learn things I wish I could share. Now in my 50's, there is nothing I would love more than to climb into bed next to them and watch TV while my mother dozes with her bifocals turned upside down, and my father reads a book.

A short while later, I heard from Anne, Page & Eliose's daughter...

Dear Trish,

My brother Eliot emailed me this morning to say that you had written to him after the "this American Life" segment on last words and the story of our parents deaths. The voice in the piece was mine (along with John Dizikes, a close friend of mom and dad).

I looked at the links you included with your email. I was struck by the similarities in my in-laws lives. My mother-in-law died 5 years before her husband did. My father-in-law lived a hard and lonely five years without her and died this last December after being bed-ridden in a nursing home for over eight months. It was a terrible decline and he was very confused, barely able to participate in a conversation the whole time. It was very hard for us watching Bob's decline and spending so much time in the nursing home for such an extended period. What a journey our parents (and we) all must travel. I feel deeply for you and your mother.

Anne

Young Love Remembered

Herman and Nora were young and in love. They met as students, and had a passion for writing.

Herman's life was cut short. Nora's life has been long.

Listen to her remember...

Telling It All

Geriatric1927 is not just using simple tools, he is re-engineering his social world with them.

His name is Peter. He's from England, he's 79, and he's found what for him is an exciting new way to meet new friends and be engaged with the world. Read more about Peter here.

You can see one of his videos here...