The parents caring for parents thread plus the other threads about taking over before and after parents die show what a huge part of many of our lives this journey is. I am thinking a lot about whether I have any regrets, anything I wish I’d said or done before parents died and am trying to apply that to my situation with the last living parent.
When my Dad died, though we had known he had an untreatable condition, the last few days were a surprise, even hospice thought he had weeks or months, but he died the day after they began. I was definitely in the mode of hunkering down for a long stint in their home and I wish I had sensed it would happen so fast and spent more time with him rather than organizing everything. There was also one conversation he and I started, were interrupted, and never finished. I wish I’d made time to finish that. Other than that I did pretty well.
But what do you do when your parent has dementia? It’s so difficult to even have conversations about a meal or where she wants to sit, I don’t even know how to find a place back to have any sort of lovely memorable conversations. Have you had a parent die after a dementia journey? Was there anything you wished you’d done or said?
It has been a long time to be responsible for her. I am hoping I won’t have regrets. I know I have done ‘the right things’ for her, but I am more considering emotions and feelings and whether I might be missing an opportunity.
I have found with my mother and my in laws that by the time the child in charge of their every day life has dealt with all the realities, appointments, medications, advocating for any changes, financial stuff, tax returns, etc., it’s easy to be simply want to be done dealing with that person in any format.
I think we’d all like to have no regrets. If you do or don’t have any regrets, is there any wisdom you’d like to pass on?
I don’t have much advice except to live like today was the last day for them. I sometimes look back and regret not doing more and spending more time with them as their health slowly deteriorated. It’s a painful feeling.
Twenty years ago, we dropped everything, home, school, jobs and friends, moved accross the country to take care my ailing Dad, he passed away few years later and then I had to take on the responsibility to take care Mom, who passed five years ago. But it is all worthwhile for me, not only I have no regrets but I should be grateful for them to give me the reason to move to CA, the land of opportunities. Over here, I had the chance to flourish, to grow, to provide and to retire amicably. Without their calling, I would be stalemated on the East Coast and have little prograss.
I think the best motto is “To Give is much better than to Receive”.
When my mother died, I didn’t feel what I thought I would feel. Upon reflection, we had really lost her several years before to the last in a series of devastating strokes. She just was no longer there in the way she had always been. My mother was very very smart. She was incredibly well read and could talk intelligently about any subject. By the time she passed, she was like a little child. I remember crying when she didn’t recognize me after her last stroke. I think that’s actually when I grieved her loss.
My biggest regret is not appreciating her more. She was a difficult person to live with, but knowing her life history, I understand it all so much better now than when I was young. She did the best she could.
@somemom, My step-father died a few years ago after a slow battle with cancer. I had three young children at the time (two who were very young) and wasn’t able to spend an incredible amount of time with him, but I think I spent enough time. I was the only family member in the hospice room with him when he passed and I think being there at that time and having the final conversation of his life probably contributed to the sense that I was “there” enough.
My mother is near the end of her life and is suffering from dementia. We have the same difficulties with her as you describe. After years of me being the only child who was local to her and responsible for the bulk of her caregiving, my brother and his wife took her in 6 months ago. The end is likely very near and I see her less than once a month now, but I don’t feel regret for not being around her more often. It’s not something people like to say out loud, but sometimes tough decisions have to be made. It’s not polite to say “I pulled my shift, now you pull yours,” but the reality is life doesn’t slow down. Other responsibilities do not step aside and wait until this crisis has passed.
The good news is my brother and his wife are excellent caretakers. His wife is a nurse, they do not have young children, and what they do for my mother is far better than the care I could provide as I try to take care of three children, and manage a job and a business at the same time.
If you feel you have done enough, don’t let doubt creep into your head. You won’t do anyone any favors by working yourself into exhaustion. It is a tough, thankless, task. The only constant is the work and the nagging doubts. And yes, I think many of us do have that moment where we think it would be nice * “to be done dealing with that person in any format.” * Don’t feel bad for thinking that. It’s normal. It is not the callousness in you speaking – it is the mental and physical exhaustion speaking.
I would suggest having conversations about their childhoods and growing up years, sooner than you think you need to, if there are additional details you’d like to know. Although my mom started out with short term memory problems for many years, one infection and hospital stay basically wiped her out. I thought I’d have many more years of her retaining the majority of her memories, but they are gone. What was her favorite food? Color? Teacher? Place she lived? Activity? Trip? She no longer knows.
I have no regrets where my mother is concerned. I said in the past, we try to do what’s right. Later, we can know we did.
My mother was terribly challenging, something that grew as I became more independent (meaning from my 20’s, that’s a long time.) I still tried to be a good kid, but could not accommodate everythng about her style/wishes and would have lost the battle anyway.
After her death, one day, I just felt a peace come on, could focus on the positives. There were plenty. In my mind, the memories I interact with are good, loving, supportive- and yes, some of those are a bit made up. There’s a lot of comfort in that.
There’s a thing in psychology where you can imagine going back and finishing conversations, giving or getting a hug, somewhat re-writing reality to help you. Forgiving yourself, as well. I don’t know what it’s called.
I am not in your position. I will never be in your position. Both of my parents were killed when I was 24 years old. I can’t know what you are feeling, and I can’t offer advice. I have many friends struggling with this, and I can only imagine what it must be like. Much like people who have never had children can imagine what it is like to be a parent.
My generic $0.02: If people want to make sure they don’t have regrets, treat each moment, each word, each encounter as your last. You truly never know.
My parents both died suddenly, five years and a thousand miles apart. (They were divorced.)
I have no regrets about any unfinished business. I did, initially, have the feeling that I had shirked some sort of duty because I never spent even a single day looking after either of them. That issue was resolved by the work involved in settling their affairs and acting as coexecutor of their estates with my sister.
There was a fringe benefit to this: In the course of settling our parents’ estates, my sister and I developed genuine respect for each other’s abilities, which had not been there before, and our previously distant relationship turned into a friendship.
No regrets. My mom died years ago after 11 years of Alzheimer’s. My dad is in skilled nursing near me. I have 3 siblings, but I bear the burden of all decisions, doctor visits, and bill paying on my own. And like you said, after years of this, I do feel ready to be done.
My MIL had early onset dementia and there was just relief when she finally passed on. She had not been able to talk for years. I regret that I did not realize my father would die so fast, I ended up arriving the day after he passed away. With my mother I ended up leaving the day before she passed away, after having spent the better part of the week with her. I regret that I didn’t take notes of her night of talking non-stop. It was fascinating - she talked about everything from a boy in elementary school who gave her a Valentine to the difficulties of getting everyone seated optimally for a diplomatic dinner. My FIL keeled over of a heart attack exactly one year after my MIL passed away. He was a sweet guy, but he drove me and the rest of his family crazy. Hard to explain, but he was basically too nice, but vacuous. (Probably the result of some mini-strokes in his early 60s.)
I lost my Dad 2 years ago and my Mom very recently. Although I lived in a different part of the country, I ( and my sister as well) made a huge effort to visit as often as possible these last few years. I spoke to Dad less than 2 days before he passed and both my sister and I were there for our Moms final day. No regrets.
My mother had dementia. Her last year was challenging. When we saw her, we did a lot of the same things with her…it was routine and she enjoyed them.
One thing we did was make a very nice photo album with picture of her and our kids mostly but us too. We wrote captions for them all so that caregivers could also share with mom. She really enjoyed this…and it was one of the very few things that didn’t agitate her.
We also had a collection of CDs from back in the day artists…Bing Crosby, Frank Sinatra, etc. and we had a small CD player where these could play for her. She would sing or hum along.
I know…those seem like very little things. But as you noted, day to day conversation was not always possible. And it was good to have things that could be repeated…that she liked.
@MoonKnight No. Not unrealistic fantasy. But there’s an exercise in therapy where you can imagine regrets, unfinished business, and more, then imagine completing that conversation, apologizing, or someone apologizing to you. I can’t remember what it’s called. It’s something that can help with grief from loss. Not about the living.
No regrets. I have been taking care of my Dad with Alzheimer’s for years. It got to the point where I found myself thinking ‘Do I really have to drive that 1 1/2 hrs round trip to visit when he really doesn’t know.?” He was 93 and it was time to go.
But, about 2 weeks before he passed I said everything to him, reminded him of his wonderful life and told him it was OK to go. Gave him permission. I thought he probably didn’t understand a thing, but he pretty much stopped eating that day. On the day he passed he was unconscious, non responsive. My sister was hysterical and emotional but I was at peace and relieved and knew I didn’t even need to be there, but I was.
Speaking of stop eating. Mom stopped eating for a week and we had to send her to hospital. After intensive examination, the head of the department rounded us up and declare she was officially in hospice and I had to sign all the paper. However, she had to find somewhere other than the hospital to stay, she cannot do the hospice there. So we decided to send her home and have nurses visit every week to start. The day we arrived home with mom, all siblings had also arrived from afar, including grand children. Mom got home at around 11, by 1 PM, we were in the dining room talking, all of a sudden, heard mom was yalling from her bed, “Are you going to starve me to death?”. We were so suprised and happy to hear that. All the girls went to the kitchen to prepare for the meal for mom. After a month or so of observation, doctor declared she was out of the hospice. A happy ending.
@Hoggirl You were so young when you lost your parents. That couldn’t have been easy. I am sure it is much harder than if they pass later. My D’s close friend lost both her parents while in college. Took years to overcome the loss.
My mom had dementia. Hers was a type that robbed her of executive function. She knew who she was & who we were, but she was not the same person. My brothers & I took turns visiting my parents, who were a plane ride away. I wish I had visited more. It was really difficult to be far away & trying to advise my dad on the phone. I spent the last week of her life with her, and I was with her night & day. We didn’t have deep conversations because she couldn’t do that. But I feel that being there was the important thing for both of us .
After my mom died, I talked to my dad a lot & visited a couple times. I wish I had visited more. He came to town for my niece’s wedding & I scheduled an appointment with a gerontologist while he was here. He told everyone I was trying to put him in a home, and he died in his sleep the night before the appointment. Talk about stubborn! But I got to spend time with him while he was in town, and I know he felt loved & cared for.
From time to time, I wonder if I did all I could have or should have. I do think I did. I was a grieving child while my mom was still alive (child of 50), and I did the best I knew how. My dad & I had always had a sort of strained relationship, but I put that aside when he needed me. My parents knew I loved them. We do the best we know how to do.
I actually learned so much from dealing with my parents’ deaths. My older brother had a stroke last year, and he didn’t have anyone but my other two brothers & me. I did everything possible to make sure my brother, who was a hermit & hoarder, know that he was loved. When he took a turn for the worse, I stayed with him through the end. I don’t know that I would have realized the importance of doing that had I not been through what I went through with my parents.
By the time I was 27 I had lost both of my parents. There definitely were things unsaid; both died of illnesses, so it wasn’t sudden but with my dad I was a kid and with my mom, I think it was because I never knew her as a true adult (at 27 I was unmarried and I didn’t feel like a grownup at all.) Added to that was just the sadness at them missing out of weddings, grandchildren, etc. It has affected my life in many ways.
Slightly off topic - I just read a NYT article about older adults caring for their very elderly parents (eg - people in their 70s caring for parents in their late 90s) and how difficult it can be. Although I still have to deal with a difficult 93 year old MIL, after reading the article I realized that it is probably the one silver lining at losing parents at a young age. (Sounds horrible, I know!)