My mom has had a living will since the 1970s. She made her wishes very clear, and her thoughts have affected my own plans.
But now she has Alzheimer’s. Physically, she is quite well, except when she trips or something. But she is hardly recognizable mentally. Some of you know what I mean.
It scares the crap out of me. I am pretty sure I would want an easy exit before that happened to me. I know how to prepare one. But thinking of it is so morbid. So depressing. And I worry. What if dementia gets me before I realize? And then I don’t remember that I wanted to pull the pin?
Mostly, I am grateful to still be here and hope to make the best of the remaining years. Yes, prepare, prepare. And then enjoy. Recently I have been cleaning closets and going through old papers. There are many remembrances of loved ones who have passed on, my dad, friends, old boyfriends. I feel greatful to be alive, and hope to be here for my kids. They are dealing with their dad’s final years right now, with early onset dementia.
Many scenarios can be hard. But I prefer to think of my mom, living independently at 93 and enjoying life and friends, my grandmother, who went around the world for the first time at age 83, and continued to travel internationally through her 80s. Find your own guide star examples of healthy aging to emulate. My friend’s mom, who has some dementia at 92, always says, “At least I didn’t die young!”
I did some volunteering for a few years with a woman who went on a trip to Chicago with her girlfriends for her 80th birthday! Her H had died a few years before. She was a gardener, and I’ve seen that sort of vitality in the elder years often in gardeners who are also blessed with good genes
Ironically or not, our volunteer work was in a nursing home. Some people there were physically disabled but very much mentally present. Others were not. For the ones who were not, many of them still had a beautiful, childlike sense of wonder and really appreciated simple things like a flower to hold. For those of you with parents suffering from dementia I hope at least they can at least enjoy those simple pleasures.
I used to carry this booklet around with me when I worked in hospice (as did other clinical staff members) - families were very grateful for it and it provided a great structure for discussion of difficult matters.
While this may not apply to some of us who will ‘go’ quickly, for those who face a terminal disease with a somewhat predictable timetable, I can’t tell you how much I recommend the little blue booklet, Gone From My Sight. You can probably read it in about 20 minutes and it is the most straight forward description of the stages people with terminal illnesses go through - they break it down from a few months out, to a few weeks out, to a few days out, to a few hours out. If you have a loved one who is facing a terminal illness, this will be the one thing you read, where you will agree that knowledge is power. It illustrates how we and our bodies begin to ‘shut down’ in the final stages of a terminal illness. It may sound morbid to recommend reading it now, when hopefully most of us are 30+ years out from facing this, but as we all get older, we will know more and more people who develop a terminal illness and having read this literature, you really will recognize the stages people go through, and it will make sense.
My dad was never one to talk about difficult emotional topics or his fears. When he was 81 years old, his mother developed ovarian cancer at almost 102 years old. She was already living in a nursing home (since about age 95), mostly due to poor eyesight - she was as healthy as a horse and active, other than her eyesight - and for that, she needed to live there. When she was admitted to hospice, the nurse gave a copy of this booklet to my dad, and it’s one of the very few times I ever remember my dad recommending reading material to anyone - he encouraged anyone that came over to browse through it. And I could tell he found it comforting to know what to expect. We all assumed my dad would live well into his 90s and 100s since his mom had been so healthy, but about a year and a half after my grandmother died, he was diagnosed with terminal lung cancer and died within four months. To this day, I think he faced that diagnosis with a courage he might not have otherwise had, except that he had practically memorized that booklet when he went through it with my grandmother and knew what to expect in his own terminal diagnosis. He had a fairly anxious personality (which was influenced by several factors in his younger years - including time spent in WW2), to the point that he did not travel well because he hated being out of his comfort zone and place of safety - and he HATED things being out of his control. But he actually faced his diagnosis remarkably well and had a very peaceful death (didn’t need/use any oxygen or pain killers until the last 36-48 hours).
I’m 58 and DH will be 59 next month. We have one 19-year-old son. Both sets of parents are not only alive, but have no chronic health issues. My mother is 78 and is a practicing massage therapist. My dad is 79, walks three miles a day, and plays tennis a couple of times a week. I just lost my grandfather to old age three years ago. We have been very fortunate or lucky. Family deaths have been few, but we know we are not going to live forever and, yes, @VaBluebird, I have been thinking about the end stages of life a lot these past couple of years, but I’m trying not to “rage against the fading of the light” for myself or my parents because, well, what’s the point?
We own our home, we have no debt, our only child is well-provided for, our wills and other legal documents are in order, and we have LTC insurance. I’m not sure there is much more we can do to not be a burden on our young and only child, but I never had the expectation that he owes us anything or should feel responsible about caring for us in our old age. That’s on us. I just feel bad that the math is against us being in his life as long as my parents and grandparents were in mine as he came to us later in life as a total surprise. I hope we’re around at least a little while for his children, but he has chosen a military life and has no prospects for family building for several more years. It is what it is.
What startles me now is the difference between how I see myself in my mind and what I see in the mirror as well as a noticeable decline in memory function and physical agility. These gradual changes are making me aware of my mortality and turning my thoughts toward how I want to spend this third quarter of my life. I do want to maintain a positive outlook and enjoy experiences with those I love, and I’m hoping to have more opportunity to do that as soon as I can get off the work treadmill, but even that step is a marker of age.
I remember your post a while back the day before you retired, and I envied you. I wished you well, and I thought, “I can’t wait to be like @VaBluebird.” How is this new phase going for you? What have you been doing with yourself? Is adjusting to retirement causing some of these thoughts, do you think? You also posted recently that you are out of state with your elderly hospitalized mom. I’m sure that is hard and adding to these thoughts, too. Hugs and prayers. You are certainly not alone.
This thread has been important to me. Some of you may remember my inlays. Those who don’t…I will just say that we had an unfortunate relationship. My fil died in 2008. My mil died yesterday. She was 95. I would love it if I could find something brilliant and sensitive or insightful. But I can’t.
Perhaps her legacy to me was that I learned how not to treat my children in law.
I am terrified of leaving my kids. Neither is in a long term relationship. I have this unhealthy and overriding fear of not being there when they are struggling., when they need an advocate, a champion of their cause. …you know, a mom hug.
I fear the debilitating long term illness that depletes all of our savings. I fear losing the money, all we have worked for, rather than the illness itself. I need to leave them a financial cushion in order for me to leave this life content. I need to give them some financial security for when they falter.
I was given a very scary diagnosis and poor prognosis in 2000, when my kids were 10 and 12. H and I were terrified and couldn’t and didn’t talk with each other about our fears for 6 months until we were finally referred to a counselor for a visit and it all came out.
My kids never believed the gloomy, awful prognosis and now 16 years later I’m still more or less similar to then but 16 years older and they are now 26 and 28. I am still without many medical answers but now pushing harder to get more–for me and for my kids.
In ways, it has been a gift to get the awful diagnosis, so we appreciate each day. In other ways, it has been very odd and scary because my docs and family don’t really know what to do with me because I am “a challenging case” and don’t behave like the rest of their patients.
I remember your post a while back the day before you retired, and I envied you. I wished you well, and I thought, “I can’t wait to be like @VaBluebird.” How is this new phase going for you? What have you been doing with yourself? Is adjusting to retirement causing some of these thoughts, do you think? You also posted recently that you are out of state with your elderly hospitalized mom. I’m sure that is hard and adding to these thoughts, too. Hugs and prayers. You are certainly not alone. >>>>>>>>>
Thank you, you are kind.
Yes, I think being with my ill Mom for a week certainly always brings it to mind but it is not just that really. I am most frightened of losing my husband as he is already 8 years older than I. He’s good and healthy pretty much though.
And yes, probably a lot of this “fright” is based on my entering this new phase.
As for retirement, I’ve been doing a whole lot of nothing really. Resting. I didn’t realize how worn out and burned out I was. Lunch w/ friends, household chores I had put off, watching movies, reading even more books. I have now signed up for the spring semester as our local Lifelong Learning Institute and am looking forward to some classes and outings with that.
I was on the wrong page and did not see the fear of aging/dying being addressed really until this page… Having learned lessons from parents who passed, my H and I are up to date with financial paperwork and have decluttered…for me it’s knowing there may be only 20 years if we are very lucky.
A few weeks ago there was a thread about engagement rings that turned into a debate about lab created diamonds. I read the Wikipedia article about them and discovered a reference to this company
Not terrified. I have been looking for older people who lead what appear to me to be good older person’s lives and try to be like them.
One shining example is a man I swim with, mid seventies. First, he swims regularly. Yes, he is much much slower than he was when I met him, but he stays out there. Second, he sings in several men’s choirs, which lets him travel and gives him a good social group. Third, he is active in his church, which gives him another social group and some community service activity. Fourth, he is happily married and has a family. Fifth, he has a bunch of what I think are funny old person rituals which he gets a kick out of, like he knows where he can get a free cup of coffee several days a week, and he goes and gets it! And he reads and stays up on the news and can use technology. He is pretty amazing.
He also has a remarkably sunny disposition. A few years ago he nearly died due to a medical error. That experience has left him much weaker physically. but it hasn’t dimmed his enthusiasm.
Come to think of it, my grandma was like him. She died a long time ago from a cancer that lasted about nine months from diagnosis to death. She suffered from rheumatoid arthritis which made it hard for her to walk very far. But she was very involved in service groups until the end. She was another good example of how to be an older person, including how to live when your body is failing you.
@HImom - thank you for the video link - I found it very informative and somewhat comforting since my mother-in-law passed away about a year ago from cancer and so much of what this woman said rang true in our experience. My own 93 yo mother recently developed (or we’ve just started noticing since last September) dementia. I wondered if she would develop this and if she would become a mean old woman. My mother is educated, was always well read and up to date on current events and a bit of a news snob. I thought she would get meaner with old age. Strangely, or I think so, she has become much nicer and more mellow. She doesn’t really like more people but she’s much more accepting that people are just different than her and that’s okay. She has started seeing her sister (died in 2003), her mother (died in 1972), my dad (died in 1980), her brother (died in 1988). She has begun to have memories of things that never happened, so vivid I’m thinking maybe they did but I check with my brother and he confirms, they did not. We have all decided not to argue with her - all her false memories are good memories - she is very happy. My mom has a very weak frame and uses a walker that I sometimes think won’t hold her up but she trudges to lunch and dinner in her retirement home and they bring her her breakfast since it is served so early in the dining room. However, her vitals are very, very good. She does sleep more and more but I’m thinking this is from boredom - she doesn’t seem to find much interesting except her cat. We talk about the cat a lot. She lives in Dallas and I live in Atlanta so I call her several times a week and fly over every 6 weeks or so to spend 4 or 5 days. I really do love her and will miss her when it’s her time to die.
I agree with most posts on this thread - not very common for me! My mother is 87, relatively healthy, and regularly reminds me I’ve promised not to let her suffer, but I’m obviously not sure how or if I can keep that promise.
As a baby boomer, I thought we’d have Soylent Green style euthansian stations by now because there too many of us to keep around, but no such luck.
I’ve been reading everyone’s posts and hesitating to post. My husband is 63 and was diagnosed with Early Onset Alzheimer’s three years ago. He looks ten years younger, always has. He left his job, abruptly, on the day of a strange poor performance review. We sought medical help immediately and, three months later, he was diagnosed. He is now on permanent and total disability. I am seven years younger and we have a son still in college. Fortunately, I have a solid career and decent income, so we are financially stable.
When he was first diagnosed, people had differing reactions. All of my neighbors spoke to me and offered to help in the future with anything we/I needed. Several of H’s siblings discussed it with him, in depth, and told me to reach out if needed. They talked to us about their, since deceased, father’s experience with the disease (he was diagnosed at age 59). Two of H’s siblings said nothing to me, but told him how sad it made them feel. (He is now estranged from them due to some comments he made via email. His filters are no longer there.) Most friends did not speak to H about it. I’m sure they were uncomfortable and at a loss at what to say.
The question several of my friends asked, when I told them, was, “What are you going to do?” I said, then and now, that we were going to get up every day and live for that day. I told them we were blessed with two great, healthy kids, a good income, we live in a beautiful place in a home that we love. We are in good health, active, and have been blessed in so many ways. What we are not going to do is let this disease define our lives. We are fortunate to have this life.
How long do any of us have? What is guaranteed to us? Today. This day. I don’t worry about how I will maintain our property when my husband is unable to. I don’t worry about what life will be like when he is incapacitated by the disease. I will cross that bridge at that time. We can plan for it, financially, and medically, and that is an entirely different aspect. I won’t waste my life worrying about disease and death.
Fear and anger are debilitating and they have no place in our daily lives.
