My parents are 81 and have lived in AL for 16 months. My dad has dementia with very little short term memory, repeating himself over and over during visits. He has also lost his sense of direction. My mom is also losing memory, though hers is better than his. She is more physically frail, with a leaky valve in her heart and neuropathy in her hands and feet.
They lived for 40 years in their mountain home on five acres. It is two hours away. I'm their only remaining child. I was making frequent visits to their home for doctor's appointments and other emergencies, but it was chaos. I suspect my mother has always taken too many painkillers, and had frequent falls and hospitalizations. They would often go to the emergency room at the hospital in town for the same problems over and over but couldn't follow doctor's orders, manage their prescriptions or eat regularly.
I started talking to them about AL near my home. My mom eventually agreed, but my dad was pretty opposed. We signed them up at a very nice place, hoping my dad would come along if my mom went. The family showed up to move them and my mother went willingly, but my dad refused to get in the car. The family was alarmed that he was alone two hours away. He would frequently get lost in a small town, would sometimes get in the truck and drive around for hours without answering the phone, and he couldn't remember his meds. So I went up a few days later and talked him into giving AL a try with Mom.
The entire first year he insisted on going home, tried to leave, and called me many times a day, leaving messages trying to bribe me to take him home or threatening me. He told everyone at the AL that I was trying to steal his property and that's why he was in there. We got a doctor's letter about his dementia and received a guardianship. It was a terrible year.
Things have improved with consistent medical care, meals, etc. They see their grandkids a lot more, which is great. They love to play bingo and can attend church right down the hall regularly. Dad still refuses to go to the doctor but the visits every two weeks in AL from the healthcare team are so helpful! Even though he can't remember the name of the town he is in and is very confused, he still asks about home and it breaks my heart. My dad has always been a kind and gentle soul. He just can't comprehend or accept any help whatsoever.
The problem is, I know they are safer and life is more manageable for all of us... but I still have incredible guilt. I feel like I should have tried to move in with them so my dad could stay in his home — he loved it so much. Even though it was two hours away from my job and my own family, and I know I could not have handled it on my own long-term. There was not much help available in the small town where they lived.
And now we need to rent or sell their home to help pay for their care before they run out of money. I cannot even talk to them about it — it would cause them sadness and they wouldn't understand. This also is extremely difficult and a guilt-inducing situation.
Do you ever get over the guilt and know for sure you did the right thing?
Recently when the 50 yr anniversary of the fall of Saigon was reported on CBS, survivors from that day were interviewed. After one interview of a Marine, Sergeant Juan Valdez, who happens to be the last left guarding the American embassy, the reporter mentioned that this Marine now lived in memory care but that some things will never be forgotten. In his segment, he remembered his responsibility to his men.
The people who get moved off their mountain know a thing or two about responsibility and guilt and having to make tough decisions. I suspect even your dad has had to make a few. I found it more useful to remind myself that it was a privilege and an honor to extend what bit of independence and normalcy to another’s life that was within my power. I tried to never forget that it would be grandiose of me to think I was large and in charge of the very nature of life. Sometimes the difference is easy to see, sometimes not so much.
Guilt is not a bad emotion. As humans who need to live together it is a necessary emotion. We have names for people who don’t feel guilt.
During my mom’s last hospitalization, I asked if she wanted to move to a NH. She was having a rough time. She said it wasn’t that she wanted to move to a NH, she might have to. I’m grateful she was able to make her own decisions and that I didn’t push back.
I wasn’t that lucky with my DH aunt. My guilt is more regret. Regret that tough decisions are sometimes required. I also had to accept my own limitations. “The spirit is willing but the flesh is weak” comes to mind. I was somewhat grateful that she had dementia to soften her losses although she had moments she remembered.
Your story is one with a validating consequence. Your parents have adjusted to the life they are living. It has given not only your parents but your entire family another chapter. Don’t forget that element when you have to make tough decisions. Some don’t have that outcome.
Your dad remembering his home and his happiness living there is a very strong influence on you. So much so that you contemplate leaving your own loved ones to enable his choices over all others. Gently I would suggest you consider this more addiction, a fantasy, he to his mountain, you to your dad.
But you, not having dementia, know that to dwell on this past fantasy of living forever on that mountain is something you’ve decided isn’t practical for the greater good. Simple and even clear decisions aren’t necessarily easy ones.
Also muscle memory from living there 40 years can’t be duplicated for a new place in 16 months. No where is as familiar to him now in his current condition. Since he is in decline, even his home is doubtful to be as wonderful as his memory of his home is to him now.
Sometimes it is helpful to pause and to mentally run through all those long tedious decision trees we have already been down a billion times to remember just why we are where we are and then take the necessary action. Not because anyone did anything wrong. Not dad. Not you. It’s the course of life, the realities you both live in. You are showing your parents great respect when you double check that you are still on the right course.
Journaling is a way of processing these events. Helpful at the time and later as you review your caregiving days. Debriefing here on the forum, with a therapist or a close friend is helpful to “check” your work. To comfort yourself, to validate that you are on the right track. And please know it won’t be any easier to sell later.
FYI:
https://www.cbsnews.com/news/remembering-the-fall-of-saigon-april-30-1975/
I hope your friend gets over the guilt and lives her life as best as she can.
They got to live in a beautiful mountain home for the best part of their lives, and now that they're no longer capable of being completely independent or safely living in that home, they have loving children who stepped up and made sure they are taken care of.
I wish that everyone could be as fortunate!
If you had moved in with your parents, you would have been giving up your own life just to allow your parents to remain in an unsuitable home.
Things would have got worse there - it would have been much harder to persuade your dad to stop driving, for instance, if he was still in the familiar surroundings of his beloved home.
It is highly likely that one of your parents will survive the other - at the AL they won't, necessarily end up being completely isolated and lonely, as they likely would in their distant, mountain home.
At some point, your parents are likely to need memory care. When you make that decision, it will also be the right one to make, as you will do it with your parents' best interests at heart.
A sensible, loving decision that errs on the side of caution and safety is always the right one to make.
Giving up one's life for that of a parent is never the right thing to do.
Wishing you and your family well.
Does your father's facility have memory care available in his facility? I hope not, so he does not have to move to another facility. He is no longer safe driving anymore with his dementia. Take the keys away from him and disable the vehicle.
You did nothing to feel guilty about. It wasn't feasible that you could have looked after two people with dementia, work a job that is two hours away each away, and also be available for your family and home. One person alone can't manage all that.
It's okay for you to feel sad for your parents that they couldn't stay in the home the loved. They did get 40 years in it and that's something great. Feel sad for their loss, not guilt. You did not cause their old age, their dementia, or the need for them to be in AL.
I am an only daughter and my father actually did plan well and agreed to move into AL/Memory Care before his dementia got worse. Even though he didn't object to moving, it's still a burden to deal with your parents' mental and health changes, no matter what. There will be at times guilt, second questioning, mistakes. That's what the journey is and it's ok, accept the good with the bad.
With dementia -- it's not about what they want anymore, it's about what is BEST for them. You are doing what's RIGHT, and that's most important. You are doing what's best for them. Be proud of yourself. There are many people who don't care what happens to their parents or don't have the means or the wherewithal to help them. Thankfully, that's not you.
So do your best to set aside any guilt, anger, resentment etc. and see how loved and lucky your parents are to have you and how wonderful it is that they are safe and your family can spend time together with whatever time they have left. However the struggle your journey might be, I know it's one I know you won't regret doing.
I don't know that you get over the guilt. Your guilt comes from being a good person from loving good parents and wanting them to be happy. It isn't always a logical emotion . Sadly, there isn't any way for them to return to the way it was.. that just doesn't exist anymore. You question whether you should have given up your life to go and help your dad continue his life he loved so much but he had that life, and it wasn't going to continue even if he stayed.
You have nothing to be guilty about. You did the right thing.. without question. The way your dads life was , was taken away from him by dementia not by you. You are just trying to do your best by them. How lucky they are to have you.
Guilt isn't involved here.
Guilt requires that you, with evil intent, CAUSED these problems and refuse to fix them.
The problems of aging weren't caused by you. And you can't fix them. So guilt is entirely inappropriate, and words you use to tell yourself things have great power as they form a habitual path through your brain.
You aren't god and aren't a Saint, and it is a kind of hubris to imagine you can be responsible for fixing everything, and for the happiness of those in the aging process. I am 82. I assure you, despite all the movies and memes about the glories of wisdom and age, this isn't a happy time in any way.
Throwing yourselves --your entire family -- upon the burning funeral pyre of the elders you love will not make for happiness for ANYONE involved. And it is often a slow burn.
Be easy on yourself. Sainthood is a bad job description when you think about it. Be happy enough to be a human being with limitations and with a right to your life.
This is full of pain for everyone. There's no way to avoid it. I am so very sorry.
My parents passed in 2018 & 2021..The guilt does subside though, at times, I feel a wave of it come back..This forum helps me realize I made the right decisions for my parents.
With dementia, my Dad asked to “go home.” He was referencing his childhood home..He didn’t understand where he was at & that he was at his house with my Mom.😞 A sad aspect of this disease..
I hope this helps..Prayers, we know what you’re going through..🙏🏼❤️
so you have a child that thinks it’s great fun swinging from the local bridge
Do you do the right thing and say no it’s too dangerous or do you cave into their unsafe requests and risk they get hurt or killed even
there is no guilt- you’ve done what was needed to keep your parents safe
Sometimes maybe conversation along the lines of
my love for you dad is greater than my wish to please you and risk you getting hurt and work with him to feel more at home in the care place
maybe he needs more of his things around him or to settle in more calls?
Or try and find someone else to explain that
Best wishes
Dad was not safe at home , nor should he have been driving .
You should not have had to potentially quit your job to move in either .
Your Dad can not understand . They all want to stay home . He does not recognize the problems .
No guilt , you did not make them old or in need of care .
Your parents were living in a wonderful home that they loved, but they didn't plan well for the future. They could have realized long ago that they couldn't live in that home forever because people do become older and more frail as they age. They could have discussed that with family and, on their own, they could have chosen a place where they would be cared for. They could have entered a facility at a time when they were still well enough to enjoy the activities of independent living. But no, not them!
They only had one surviving child - you. You work and have a life far away from their mountain home, but it was YOU that was supposed to alter YOUR life to take care of them. Plenty of warning signs; hospital visits! recurring health issues! And they never blinked an eye even as dad began to have signs of dementia! You! You are their salvation, never mind that THEY SHOULD have assumed responsibility for taking care of their own selves. So much for the common sense that they could have called upon at one time to figure this out for themselves. So much for your peace of mind!
Guilt? Because you think you should have moved away from your precious family to take care of over-entitled selfish parents who still do NOT understand your many sacrifices and never will? Because YOU can't make them happy enough? Because dad is sad? The truth is that you are not responsible to fix things that they should have taken care of long ago, such as checking into a continuum of care retirement place where as they get sicker, they could go to memory care, rehab, or SNF in the same facility. Guilt? When your family should come first, not them? When you can't, even now, discuss what needs to be done with them, grown-up to grown-up, without feeling even more guilty because they'd be sad? Awww, poor babies.
It isn't your job to keep them happy. The way to feel less guilt might be to work up a little resentment toward your parents. They could have spared you but didn't.
You are a kind and caring daughter, but for your own sake, you need to back off and stop being so empathetically involved. When the whining starts, and the blaming, and the tears begin, you hang up or leave. You can be nice about it, but don't keep giving them chances to load on the guilt, complain about their situation, or on and on and on. You didn't bring this upon them; their own failing health and lack of foresight did.
You should be mad as ell.
It sounds like you folks are both doing fine in AL, so let yourself off the hook you've hung yourself on. Realize dementia is a no win situation for all concerned....you, them, everyone. Instead of blaming yourself for this situation, blame the disease which robs your parents of their minds and their abilities. That's the true culprit here.
Do you love your home and family? Why in the world should you have to give them up to move in with your dad so he could stay in his home? Read through this forum about the many people who did that, with good and generous intentions, and came to thoroughly regret it. If he's kind and gentle, as you said, he, if in his right mind, would never want you to give that up for him.
But it turns out that it was definitely the right decision for her. She does not use a cane or walker. She has constantly tried to escape the building, so they moved her twice. Now she is in the farthest room from the doors of the Memory Care unit which has door alarms. She has a Wander Guard on her ankle, which sets off alarms anytime she wanders off. She still believes her sister (who's been dead for almost 7 years) lives in the building and she wants to "find her". I just make excuses for the sister, as going along with these dreams that they believe in is typically the best to keep things calm. I cannot convince her of her sisters death. No matter what evidence or proof I show her, she just gets upset. She is acclimating to the place, which is good, because initially all she did was ask me to take her home.
So, expect that at some point, things to get worse. This is not the scenario I wanted for my mom to finish her life. But it's better than being scared and up all night wondering what she is gonna do next.