Well... I was considering having children until I started caring for my father because I wouldn't wish this on my worst enemy. I was a "late baby" (my brother who committed suicide was even younger... 10 years), so my father was 47 when I was born. I'm absolutely TERRIFIED to reproduce at the age of 38 now for the fear that I will get sick and have kids that resent caring for me.
Then I think I wouldn't be a good mother because I get so frustrated with my father when he doesn't sleep (babies keep you up at night as well), or I snap at him for ...whatever.
Finally, I think about putting a contingency plan together for aging. The short time I had Dad at the Independent Living (IL) facility, I would listen to the elderly parents that put THEMSELVES in the facility so their children could enjoy their freedom--so they wouldn't be a burden to their children. I admit I was a bit jealous. Why can't my Dad do that?
Then I have "angry compassion_ so to speak. Isn't it interesting that if an animal gets to the point where they can't function, they're put down, yet humans can literally suffer for YEARS (patient and caregiver) existing as a fraction of the person they once were.
I get it... it must be horrible to exist without being unable to hear well, see well, move around, remember anything, and be in pain most of the time, but should the caregivers suffer?
NOTE: I'm not advocating euthanizing humans... just making an observation.
...and to top it off, I want to SCREAM the truth at by standers that "commend" me for taking care of Dad. There's nothing commendable about it. I detest it most of the time and feel guilty for feeling that way every day.
....random venting I guess
when I speak with people in their 80s and 90s, what I hear is "I should have.." "I wish I had gone/done/been....." (Fill in the blank)
So what I know is...... When my time with my parents is done, I am cutting loose. No more planning for next year, next decade. Do it now. Follow the dream that has been in planning and on hold.
A life of planning very often means a plan never lived.
It looks like your parents made a plan and were living it. Good for them for stepping up. Is it possible your decision to step in and bring your parents home was not what your parents wanted? Perhaps they were trying to avoid consuming their children's lives? No disrespect intended, I'm just trying to understand if they wanted intervention?
Honestly, my children will not know where I am or what I am doing. When my time comes, I plan to let it happen. Make sure no one can interfere with letting me go. What they do not know cannot force them to make the choices I had to make.
I toured one community this past week... say what, three cement steps and no railings up to the front door porch., even I was unsteady walking up... and inside, the stairs to the 2nd floor were way too steep, more like rock climbing. The walk-in shower could fit a crowd so I viewed that as a lot of walls and glass doors to dry off, I would be too tired to make breakfast afterwards. Looks like this builder never consulted with anyone 55 and older. Cross that community off my list.
I didn't know I'd spend a decade (and counting) of my life taking care of my family. I have lost so much of my own life, job, relationship, hobbies, activities, that I also lose hope for my life. I think caregiving has horrified me as to the way we strive to live longer and then do so either mentally or physically broken ( or both) years longer than is good for anyone. Medicine doesn't always dictate that, my grandmother never saw a doctor and took no meds and was dependent the last 20 years of her life. I would love to have an exit plan. I live in Oregon, so it's possible to have one if you have a diagnosis. If you are experiencing aging without a diagnosis of a terminal disease, you're not eligible for assisted suicide. My doctor says if you want to stop living, stop eating. Guess that's what I'll do when it's time. I had a maternal grandmother do this when she was at the end of her hope. I have been denied LTC insurance because of polio when I was younger, so I know I cannot afford to take care of myself. And you all know that in a facility there's a point where someone has to pay bills, monitor care and do the shopping. People without anyone to look in and take stock of what is happening get the worst care. And LTC insurance only goes to the people who have someone to jump through the paperwork hoops when it's time to claim it. My loved ones who had it would have never been able to deal with the paperwork. So, whether we like it or not, all of us will need someone to look after things.
My 91 MIL has been with us 12 years. Started out easy. Now the only thing she does for herself is shower and dress and toilet herself.
I have watched her slowly decline in health - yes, she made poor health choices - NEVER said no to a piece of cake, a cookie or ice cream - even now with diabetes. She refused to do her physical therapy and then wonders WHY she is in such poor physical condition. She lost her ability to drive and blamed me and then became vengeful and hateful and vilified me to anyone she knew. Sadly, since she did this behind closed doors - it was years before I knew what she had done and said. She destroyed any trust I had in her. I care for her because I am a God fearing woman with a kind heart and she has NO IDEA how fortunate that she got stuck with me. :0) I just keep on giving...............
Has caring for her changed me? Absolutely! For the better? Not sure. I know I see my own mortality every single day. I resent that her other kids only see her when she's made up and looking pretty for a couple hours once or twice a year. I see her in her night clothes all the time, barely lifting her feet when she walks, complaining about being alive and wish she were dead and sharing all the ugly details of her dismal life with me each day. She is very negative.
If the sun shines - it is too bright. If it rains - it is too gloomy. The food is either too hot or too cold. Too sweet or too salty. Nothing is right in her life.
I know I hug my kids more and try to be nice to them. I pray every night that I not become my MIL as I age. I do resent that my BEST years of retirement - those before age 70 - are gone. I often think I will die before she does. She just keeps on plugging along and hating every minute of it. I know it's hard for her. But she has NO IDEA how hard it is for us.
I have told our kids to put us somewhere decent and stop by once in a while. We do not want them to sacrifice their lives for us. It is so unfair.
In times past - there were larger, extended families who actually HELPED EACH OTHER care for older ones. Then again, in times past, you did not get old unless you were 'vital' as Margaret Mead once said. I read an article written by her in my teens and still remember her stating that she never feared old age because every old person she knew was 'vital' - people were either healthy and vital or dead back then. Now they are propped up with multiple pills and procedures. My mother in law wants to be dead - but fears dying. She can't win for losing.
What a predicament to be in. How truly sad. And it is repeated over and over and over. Just read the comments in this thread.
I've been fugal all my life, have a good savings/stocks so I need to figure out how many years I could reside in IL or AL. I am just so glad such nice places are available. I wouldn't mind being in Assisted Living at this one place, even if it is a studio apartment.... I have the rest of the building for myself :) Numerous living rooms, couple of nice enclosed sun porches, couple of nice outside porches with chairs, restaurant style dining room. And wonderful staff who are smiling and happy to help you out :)
The ones who 'glow' about how great it is/was to care for mom/pop, etc. are usually fortunate enough to have plenty of funds, plenty of help and perhaps a 'shorter overall experience.'
It is never easy for anyone to care for another who is in declining health and who will never get better - but definitely a lot harder for some than for others and therefore a greater negative toll on their lives. I
I think caring for those with cognitive or personality disorders has got to be some of the hardest to deal with. But, I laud ALL CARE GIVERS EVERYWHERE - they are a special breed - usually the kindest hearted of the bunch. Hang in there. You will be changed forever. Hopefully you survive and come through it a better person and not completely burnt out beyond recognition. I pray for all care givers each night. They need all the help they can get. And often, they get NONE. :0/
But I totally agree with your basic premise. I remember one guy who wrote a book about how we should become a nation of caregivers after he took in his demented Mom and cared for her until her death. Turns out he had 24/7 paid nursing care for her. Easy for him to say we should all be doing it - he wasn't doing the hard gritty full-time work that many with fewer resources have to do!
We were just a family that kept quiet about our health. I shouldn't complain, I never told my parents I had cancer while I was trying to help them out when they stopped driving.... [sigh]
She sugar coated EVERYTHING, even the truth! Taking her to the doctor before I had to move in, the doctor would ask "Norma, what's wrong?" Her response "oh, nothing." I told her that she had to speak up, especially to the medical professional!!!! That fell on deaf ears!!!! Mother and I clashed because we were polar opposites!