A place to talk death and dying issues
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I have told rveryone ,that will listen that I want to die here at the home, not sure if I wrote it down will check
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Bon - The word "hospital" might be a good addition. Thank you. Perhaps with the condition that should hospitalization be necessary, that it be limited to the shortest time possible, and for no more than three weeks, before she returns to her own home. That way if she should have a fall, or need surgery for something she could be cared for in a hospital and her home could be adapted for her needs.
My friend is a truly nice woman who is a touch simple. I've known her since we were teenagers. She copes with everyday life well enough, though she stresses out too much about everything, but she is not able to stand up to her lawyers and trustees. I have tried unsuccessfully for over a year to persuade her to hire a lawyer to represent herself to stand up to them, but she cannot bring herself to do it. Her father took care of everything for her all of her life, but now he's gone. At 65 and becoming frail, she may need help sooner rather than later.
When the time comes for her to need help in her home, I could see them pushing her into signing a conservatorship, and after waiting a decent time, they would definitely park her in a nursing home and be done with her. She has asked for my help and I am doing my best.
Question: Has anyone seen any Health Care Directives written for those who wish to be cared for in their own homes?
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Hortense: I suggest that you help your friend to find an attorney who practices in the area of elder law or guardianship. There are ways to protect her in the future; however it requires professional services. Your kind heart will give her emotional support, but leave the work to attorneys.
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Bon, great ideas
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Hortense thank goodness you are helping her. You are a good friend. Many nice ideas. I do hope your friend gets someone to represent her wants and wishes and not sit idle by as the vultures hover. ugh..
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Cling and Bon - The first thing I did was suggest getting an attorney. I even found her a good one that specialized in trusts over year ago, but she backed out of seeing him because she is not up for a fight, even to protect her own rights. It is hard to understand, but she is child-like in some ways. Because of that, her father set up her trust, lawyers and accountant before he died. He had always watched out for her and now that she no longer has him to advise her she is afraid to separate from the people he put in place, even though my husband and I have been telling her she needs her own attorney. The bunch she has is taking advantage of her, and making a bundle, i.e.: her accountant gets close to $100,000 a year for her uncomplicated finances. Fortunately, she can afford it.
She divorced years ago and has no one in her day-to-day life to help her make decisions or stand up to these people and feels very alone. I see her when she is in this state at her house here, but she lives most of the year in another state. She has appointed a step-brother she rarely sees to make her decisions, but he lives far from her, and while a decent man, he would not want to become saddled with an enormous responsibility, such as overseeing her health care at home. I believe she has only asked him to make end of life decisions - no tube feeding, etc.
She has a number of health issues that come and go - last year was a bad one. She has survived kidney cancer and colon cancer, and is being watched for breast cancer - she has a clip in place - and is not always too steady on her feet due to back nerve problems. A bad fall is real possibility. Her lawyer knows about her fear and has done nothing about soothing it, when he easily could have written a new directive for her.
She understands the need for a new one that reflects her wishes to be cared for at home and has left it in my hands. It is perfectly legal for directives to be written by people other than an attorney. I am simply adding some new wording to the one she has, then will get it witnessed and notarized when she signs it.
However, I have been surprised not to be able to find any wording specifically for those wishing to stay in their own homes. I've looked for examples online and in my local library's health care directive/living will section, but found nothing. I know quite a few people arrange to stay in their own homes, so expected to find something.
On the other hand, I did find out that holographic health care directives are allowable in some states! Who would have guessed? And, what do they look like?
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Holographic just means hand-written.
The problem with all this is that the living will is only good if you are diagnosed with a terminal condition and the doctor believes you only have six months to live. There are a lot of situations (a long term chronic condition or deterioration) that would apply to what she wants and don't have a thing to do with a terminal condition.
The important thing is more that who she designates as her health care power of attorney respects her wishes and is willing and able to spend all the time necessary to oversee all this.
You also must not be doing things in conflict with the trust.
If she spends lots of time in another state she needs both state-specific versions.
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Agree that choice of DPOA for health care and finances is critically important. Consider accessing the services of a Geriatric Case Manager to assist with planning and advocacy. Some of the GCMs are social workers with master's level or higher degrees, and they will have expertise in the area of eldercare. They also will know of other resources that would be beneficial.
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MelissaDallas - "The important thing is more that who she designates as her health care power of attorney respects her wishes and is willing and able to spend all the time necessary to oversee all this."
You are right. But in this case she hasn't discussed long term care with her designee, just asked him if he would act as her health care proxy and he agreed. And, she only did that after I convinced her that having her half-sister who lives in Europe as her proxy, as she does now, was not the best idea as the sister lives so far away and hates to travel and will not fly. I hope to speak with both him and my friend when he comes to visit in a few weeks to help them understand what will be involved. I am a distant cousin of both.
"You also must not be doing things in conflict with the trust."
Again, you are right, but nothing would conflict. Also, I am not looking to inherit so there is no conflict of interest.
"If she spends lots of time in another state she needs both state-specific versions."
Actually, I thought so too, but was wrong as I found out that having them in two states can create a legal conflict if the two states do not have the same wording or views about care. The advice I keep reading is to have a directive written in one state, make sure there are two witnesses - one state requires three - and other states should honor it.
Brenda - "choice of DPOA for health care and finances is critically important." You are so right. In this case, the finances cannot be changed due to the trust, but the health care directive can be carefully written out so that her wishes have to be honored - by whomever is her proxy, her lawyer and accountant. Copies will have to be given to others to be sure her wishes are known and followed. That is another reason why I have tried to get her to hire her own lawyer, but so far she will not.
I should apologize for running off with this thread. Please forgive me, everyone.
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Hort that is fine with me, no worries.0 -
If anyone is interested, CBS just wrote a story on dying: http://www.cbsnews.com/news/dying-without-dignity-americans-get-treatments-they-dont-want-study-finds/#postComments
I thought it was good as it talked about people getting treatments they don't want or need. It was based on a recently released 500 page report by the Institute for Medicine called "Dying in America". A link to the report is in the article.
The report stressed the importance of palliative care, among other things.
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A friend passed away last month in Osaka. Her breast cancer was discovered in July 2012, she did not reveal the details of her diagnosis. After seeing her father went thru all miserable treatments and died of lung cancer, she was determined not to have surgery, chemo or radiation treatments. She went on organic diet and worked until this May, and she stayed at home until death. I questioned her decision not to seek any medical treatments, but I admire her courage to die the way she chose.
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so sorry about your friend. I'm happy she chose a way that worked for her. My deepest condolences
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Bon I have it on my calendar target Nov. 20th. Then you can skate girl. Whatever your heart tells you about your cat. Just do it.
We will plan a phone party that night LOL. Well for a little bit. What do you prefer to drink ?Hortense, you are working so diligently bless you. I saw your dx of indolent lymphoma. Have you contacted the Leukemia Lymphoma Society? They have grants up to 5000$ with grant approval. The grant is just gathering of documents and filling out their forms. Only a few pages long. Then physicians forms. ???? The were a boon when DH had lymphoma. They cover allot of bills.
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Here is what I came up with:
I, ...., willfully and voluntarily make known my desire that if, or when, the time comes that I am unable to live independently I wish to have arrangements made for me to be cared for in my own home until I die. I do not want to be placed in a nursing home, assisted living, or other health-care-related facility or provider. My home is to be modified and adapted for my safety, care and comfort as needed, and staffed appropriately, my relatives and friends are to be allowed access to visit me, and I wish to have palliative care as necessary to keep me comfortable as I age.
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I was diagnoised initially at stage 4 and told that ten years in the most I can hope for. After crying for a week, I told morbid death jokes for months to the annoyance of my family. During the joke phase, I started living in the present. While it is cool for my mood, it seems to make me more forgetful. I decided to stop the jokes, and off handed comments like "If I am still here." Such jokes were needed to help me face my reality, but they are not helping me stay in the present.
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it's been my experience that if you can rise above the fear and uncertainty, and if you have a certain level of stability, there is a lot of living that can still be experienced even with a stage iv diagnosis. In over three years, I have had many wonderful times without letting the c thing take center stage. When first diagnosed, three or five or even ten years did not sound long. But my perspective changed as I moved forward, and I don't project myself so far into the future. I learned to be more present minded. Everyone is different and at a different point in their life. We must all find what works for us.
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DrBonnie - your diagnosis is still so new and raw, it is not a wonder you are finding it hard to regain balance in your life. The best I can do is send you some cyber (((Hugs))). I hope those around you are super supportive for it is a lot to digest. I hope also that you will find peace and acceptance so that you can focus more on day to day living, rather than on worrying, even a little, about having a shorter life. I know that I will not live to be as old as my mother or my grandmother, and I can't change that. My cancer did.
A wise woman on this forum told me right after I was diagnosed that "Nobody promised you tomorrow". After my initial surprise, I realized that she was right. It made me realize that I am lucky to be here today. I could easily be hit by a bus - my husband's aunt was, so I know it happens - and that would be the immediate end of me. Instead, I am still here, and while going slower, I am trying to enjoy what I have - the people I love, the small beautiful, simple things that I try to notice every day, the sweet memories brought back by things I run across.
Do your best to think about what you do have in your life, and try not to think ahead.
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Well said hort
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I've said it a few times on these boards...how much I hate death. I did something tonight I never thought I would have. My grandfather was dying and I had taken my mother to see him (her father). We stayed for a couple hours. His breathing got shallow and his hands and arms were cold and clammy. Mom was too upset so I took her home. I went home and took a shower because I was preparing to go back and stay the night with him so he would 't die alone. It's a 30 minute drive to his nursing home. On the way there I heard a new song on the radio about--if heaven wasn't so far away I'd pack my kids up and take them to meet their grandfather...well needless to say I started to cry, but I also felt that he was gone. I was only 5 minutes away. When I got there and walked into his room, he was gone. The nurses didn't even know. But what I did next was beyond me. I stayed with him for the next hour and played hymns on my phone. There was no rattle, no gasping for air. Just peace. I held his hand and rubbed his arm. I can't believe I wasn't freaked out, but I was just sad mainly. He was a complicated man. Hard to get along with at times. But he loved me, for some reason...out of all the grand kids. He had a strained relationship with his son and daughter. He divorced my grandmother after 60 yrs of marriage! It's a long story, but everyone cut him out of their lives except me. I just couldn't do that. I felt he was misunderstood and sick...and old. Anyway, he was really good to me and very sweet. He had moved out of state after the divorce 7 yrs ago. I brought him back last yr when his health started to decline. My mother and father were able to figure out their feelings and came to a place of love and acceptance for grandpa. My uncle went to see him once. Fatherr's day this year. Grandpa didn't recognize him but told stories about him to him. My grandmother doesn't know he died yet. I'll let mom figure out when to tell her. I guess his death is easier to take because he was 94. He lived a great life. He traveled and hunted and did all kinds of things. He really lived. And he had a great sense of humor that really came out this last year of life. I know he is so glad to be done with this life. Being cooped up in a nursing home was not his style. He believed in God the almighty (as he would say). I know he is so happy to be with his parents and his brother. Some say there is beauty in death...I'm still not there yet. I am selfish and want to hold on to this life for as long as possible. When the time comes, I'm sure I'll be ready. Thanks for letting me vent.
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How sweet of u. I've heard that people who r dying pick who they want with them. I am sure he knew u were there. Hugs
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Kjones, that was a beautiful post. Thank you for sharing it, and I wish you and your family peace. Love to you tonight!
Rose.
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kjones. So sorry. Thanks for sharing your honest emotion. Sweet of you to go back up there and then spend that time with him. Sounds peaceful. Will be keeping your family in my prayers.
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Kjones, So sorry about the loss of your grandfather. His end sounds very peaceful and even if you were not physically present when the end came, it seems as if you were with him emotionally.
I hope your grandmother doesn't find this news too painful, when it is communicated to her. Whatever unhappiness has been caused by the divorce, 60 years together is long time. There is a great deal of history and memories which your grandmother may still grieve over.
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Thanks for sharing your experience kjones. I'm sorry for the loss of your grandfather. May he rest in peace. 94 is a good many years.
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We're so sorry, Kjones to hear about your grandfather. Thanks for sharing your story and a little bit of his with the community.
Big Hugs
From the mods
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Beautiful Story kjones. May your Grandfather RI Paradise!!
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thankful for your feeling of peace after his passing.
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Hello all, I read you often but seldom post anything-- I am not Stage 4, but was caretaker to my (wonderful) father during his esophageal cancer and eventual stage 4 brain tumor, 3 years ago. We used Hospice, and I lived with him at the (great) Hospice facility (in Kansas City) for his last 6 weeks. This allowed my mom the ability to come and go as she was able, and left her home a place of respite -- where she could continue a somewhat normal routine. It worked for us, may not be right for everyone, but having Hospice staff immediately available at all times for Dad was a Godsend, and Mom having her house "non-hospital" was a peaceful solace for her. Our Hospice facility was like a fancy Marriott equipped with a hospital bed -- spacious rooms with the most comfortable couch and fold-away cot... and always (free) food (like soup, yogurt, stews, freshly made breads and sweets of all kinds) for the families... and free counseling for both patients and caregivers -- for up to a year afterwards.
The funeral was 2 weeks after Dad's death, which allowed my sister and I the time to create a beautiful ceremony which celebrated his Life -- and a great slide show of his life, family and him hiking and camping and the mountain scenery he loved to photograph. Dad taught Boy Scouts for over 50 years, and many scouts in uniform attended, and performed an honor guard. Dad was cremated, which was much less expensive, and allowed us more time to emotionally 'adjust and accept' prior to the service. Mom's wish is that when she dies, we will also cremate her, and combine her ashes with Dad's -- and then bury them together in the same grave.
It was a great honor to help Dad pass, and I just wanted to reassure you that for many of your loved ones, sharing this powerful time with you will be one of the most important discoveries of their lives. It changed me forever in such positive ways -- and taught me a new way of perceiving Death -- and gave me so many new emotional tools to use when I, myself, was diagnosed with BC 6 months after Dad's death.
The last cognizant conversation I had with Dad, we joked about what he might do in the Afterlife... and I said that I hadn't had much luck finding good men (I was 56 then and had never married, had a succession of pretty unhappy love affairs-- although I had been making some deep-level personal changes and felt I was finally ready to let a GOOD man enter my Life.
I told Dad that if he ever got bored in Heaven, maybe he could pull some strings and send a great man my way. That was our last conversation. That very afternoon he fell into a coma, and I like to believe it was so he could get one foot in Heaven to work on my request... because that afternoon is when Les showed up in my E-Harmony account and we began communicating. How wonderful was it that Les was there to support me through all my BC surgeries and recovery? It was as if Dad knew he could no longer be there for me, so he searched out his "replacement" -- a wonderful partner -- a future husband for me!
We married this summer, and Mom lamented after the wedding how sad it was that Dad never met Les, and that Dad wasn't there to (finally) walk me down the aisle. I just laughed and told Mom that Dad had hand-picked Les -- and that of course he had been at the wedding -- it was all his idea! (Dad and I were outdoor buddies -- and Les is a wildlife biologist who lives/works on a huge ranch in the mountains, surrounded by incredible natural beauty, only a stone's throw from Philmont, the most famous of the Boy Scout camps... I now live a "Natural Beauty" fantasy ... and I love thinking Dad created it even better than I myself could have imagined.)
Anyway -- I still take walks with Dad. I still share sunsets with him. When I find antlers I credit Dad with having directed my eye to them (antlers are worth good $$ -- and helped pay for our wedding/honeymoon). One afternoon I was joking with Les-- that if Dad was still alive he would have been sneaking me a couple extra hundred from his "hidey hole" to buy myself a special souvenir from the honeymoon -- and immediately I spotted a huge brown antler out the truck window -- in a place right by the road where hundreds of others could have seen it! Oh, how Les and I laugh about Dad's new 'currency'! (A big brown/fresh antler is worth about $200!)
All this story is to reassure you that you are offering your families one of Life's most precious gifts... by allowing them to share this time in your Lives... and perhaps to give you a fun (and exciting) idea -- a chance for a great conversation with the people you love -- how you might try to help them from Heaven, when the time comes. Then, when those great Life surprises do come to pass, it allows your loved ones to continue to feel your presence and for you to be connected in Love.
I know that not all people have the same spiritual beliefs, and frankly, I had, before Dad's illness and Death, never thought much about the Afterlife. But my spirituality during and since his Death is so much more fluid and loving and accepting -- more JOYFUL. Death will come to us all -- it is a part of being a human being. Once again, my experience with Dad's Death has made me much MUCH more peaceful about my own... and how I will deal with the loss of the other loved ones who may pass before me.
I wanted you to know that you can continue to be a powerful presence in your loved ones' lives... and when good things happen to them in the future, they can (like me) smile and feel you close.
Just something to think about -- You have so much to offer those you love by allowing them to share this time with you. You are NOT at "your worst" -- your soul is probably more vibrant and close to the surface than ever before... and our souls are what are connected. That is the connection which lives on and on...
All my best -- and one short request:
What is the sweetest/most-helpful things your loved-ones (especially husbands) are able to do for you during this time?
I am communicating with a husband of a woman with advanced cancer, and he so wants to be supportive in positive and loving ways. What can you suggest?
Thanks so much for your help.
Linda
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Linda - suggest you take your question to the "not stage IV but have questions thread" or you can also post to the caretakers thread as well.
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