Advice on dealing with aging parents
Questions first, the long backstory in the details section that follows if you care to read it. Thank you in advance for your consideration.
I've framed this in terms of parents for convenience, but of course I am interested in anyone's experience with the aging.
What did you learn later that you wish you knew about having aging parents when they started needing more care?
What resources were the most help to you navigating the transitions?
That resources do you think were the most help to your parents in navigating the transitions?
If you weren't local, what kind of things did you do to help stay connected? What worked, and what didn't ?
I'm really struggling with depression, disappointment, and worry about my parents. What advice do you have for me?
Details inside. Sorry in advance. This is a long one.
My parents are both in their 70s. My mom retired about 10 years ago, but my dad only retired last year. Shortly after his retirement, he received a dementia diagnosis.
My sister and I live about 3 hours apart, but 1,200 miles away from my parents, who still lived in the town we grew up in. I have been quietly campaigning to get them to move closer for years. My mom always said, "When your dad retires, we'll think about it." But my dad has ADHD, and most things don't happen unless my mom spearheads them. The bottom line was that she didn't really want to leave, so they didn't.
The dementia diagnosis proved to be the required catalyst. They have been packing for the past few months, and the movers moved them in to their apartment in the city where my sister lives. They're holding an estate sale to get rid of the rest of their stuff, and they have already found a realtor to list the house.
They moved into a two bedroom apartment in an independent living facility that has options up to full memory care. Right now they are both functioning well enough not to need any daily care, though my dad is no longer driving.
This new place is going to be good for them at least in terms of meeting their physical needs. It's a very nice facility with lots of social spaces. There's a (kind of blah) meal service, exercise equipment, a movie theater, and guest apartments we can stay in when we visit. It has a shuttle that they can book to take them anywhere within 20 miles, so the fact that my dad can't drive it's not as limiting. They're within easy walking distance of a grocery store and a Target.
I went to visit them this week to help with some unpacking. It really made me sad. They moved from a seven bedroom house that they've lived in for 20 years in a town that they lived in for 45 years. The new apartment is 1200 square feet in a town where they don't know anyone but my sister. I'm glad that they made the move because they need the support, but seeing how diminished their circumstances are, and in some ways, how diminished they are has been really depressing to me.
Things are even harder because the relationship dynamic between them is not good. It's become apparent to me that they mostly function as a couple by not being together. My dad would be at work all day, and my mom was doing her own things: volunteering, book club, etc. Now that my dad is retired, there is a lot of friction between them. It's compounded by some anger outbursts from him that are probably related to the dementia but also certainly related to the unresolved conflict between them. He sees her as the person who's taking away his independence. She feels hurt that she's treated like the bad guy in every situation. She is also bitter because their plan was that he would retire and they would travel and see things they had always wanted to see. The truth is more like: she was enjoying her retirement and independence without having him underfoot, and now she has to face the consequences of having put it off for so long. They have tried couples counseling, but my mom has been saying she doesn't want to keep doing it. I had a super weird moment at Target when we were buying things for their apartment the way you would for a child going off to college, and I almost had to break to an argument between them about towels.
I guess I have idealized their relationship in a way that ignored the reality, and now that those blinders are lifted, it's really shaken me.
To top it all off, my dad has had cancer (GIST) for the past 16 years. It's been pretty stable and manageable, but he is scheduled to have surgery in a few weeks to remove a tumor that recently started growing. This will be the first surgery in the new city, though they have an excellent cancer hospital so he should be in good hands. I will be there for the surgery and the recovery, so that is a good time to be able to suggest things to them or help them with things.
First off, let me say that this is a hard situation to be in. It's a situation that comes for a lot of us with time, and I'm sorry that you're going through it.
I think the first thing to think about is how to take care of yourself so you can support them. From the backstory, it sounds like for the moment you're not having to drop everything to be a primary caregiver, which is a great starting point. If there's a local support group for people with aging parents, it can be helpful to attend. Just having a set of people who really understand the situation you're in and with whom you can regularly connect will help a ton in dealing with the emotions that are going to be coming up as you start to take on aspects of the role of caregiver that your parents once were to you. I'm really glad your parents are in a situation where their day to day needs are met and they won't need to move as your father's memory fades, as it will make everything else much easier. But really, take care of yourself and your sister. This isn't going to be easy, but it'll be be easier than it otherwise would be if you can stay a team.
If you or your sister can get medical/financial power of attorney paperwork done while your dad is still coherent, it'll make things a lot easier. Your mom may be able to take care of everything for now, but if she has a turn for the worse and is the only person with access to their accounts things could become an emergency fairly quickly. I'd talk with an estate attorney, if you haven't already.
I think one of the core things to keep in mind is that you can only provide as much help as they'll let you, and it may get bad before they let you. Power of Attorney can let you skip some of the problems, but it will mean taking away their agency at some point when they may not agree with it. Especially when your dad starts to really have problems, he may be really angry with you. If you're doing the right thing by him, you may need to do it despite his anger. Consensus between you and your sister will help.
I deeply sympathize with your desire to help your parents in this time, but at least for now they're still in charge, and it will never be your job to solve their interpersonal issues. Take care of yourself, support them as they want support. and have a plan for when they need more from you.
Also a living will, which can help clarify their wishes in various circumstances. And am actual will, if they haven't done so already.
This is good advice. I will look into it. And for my sister too, source she is local and probably can get more inside baseball on services and such.
I can't answer your questions but I will say one thing: it seems like a major part of the problem you have is that your parents have a bad relationship. While definitely understandable that you are worried about that, it is in no way up to you to solve. That is their own responsibility and if you as their child get involved in it then you will eventually be choosing sides. It is for the parents to fix, repair, solve etc., their relationship issues, it can not be on the child.
I appreciate it. And you're right that it is beyond my control.
I think I'm a little afraid my mom will "give up" on my dad, and then it will be much harder to navigate.
And underneath all that, I see myself as a product of my parents, and if they are capable of this, what does that say about me? I know I can be more and different than they are. But I also know they are good people who didn't set out to be this way, and somehow they are here anyway.
It only gets worse from here. Dementia is a terminal illness. He will not get better. It is not temporary. There will be good days and bad days, then there will be good hours and bad hours.
We did find that our city’s Council on Aging had good advice. They deal with elderly all the time who don’t have anyone else to care for them. They’ve seen it all.
We were local, about 10 minutes away from the memory care facility. But this question reminds me of the repeat cellphone calling. Every 30 seconds, for hours on end, at all hours of the day. So be ready for that, should you decide to let him keep a cellphone until he doesn’t remember how to use it at all.
I’m really sorry, but steel yourself. Again, it only gets worse from here. Once I fully realized that, we were able to plan ahead instead of dealing with the current state and then being disappointed when it got worse again.
I expect the dementia will let your father acclimate to the new environment without much effort. I've seen patients have a really rough first few weeks, then as they get used to it, and literally forget their old place, it calms down. Your mother might have a more difficult time because she’s more aware of the change. Hopefully she appreciates the smaller space to manage, especially as your father’s condition progresses. You state that they are functioning well enough to not need daily care; this hits me as a red flag. Are you sure they are functioning well enough to not need daily care, or is it only your mother and she is picking up all the slack, every moment of every day? Is he still sleeping through the night? Eventually he won’t, and from what you’re saying below I’m worried that she’s the type who won’t say anything until she is completely burned out.
Yes, get used to being the parent now. Reason and rationality might still get you somewhere with your mother, but the time is coming when that won’t work on your father anymore. Prepare now for your father’s transition to memory care. Keep a schedule to get your mother a break from being his primary caretaker. You may have to force her to go to that movie theater, or take the shuttle to a nearby coffee shop or whatever. She will need time out of there, often, even if she refuses to admit it.
This will be an opportunity to really assess his condition. Observe how quickly he is recovering, or whether he seems to stall at a plateau. Pay attention to your mother’s state as well. Is she still cooking their food? Keep an eye on expiration dates, and whether their food supply is being consumed and replenished appropriately.
The dementia subreddit is actually very good still. Make use of everyone’s experiences there. On a positive note, be glad that your family is fortunate enough to afford memory care. I have no idea how people deal with this when all the caretaking must be done at home. Good luck, and I’m sorry.
Thank you for the reality checks here. Hard to read, but I appreciate it.
This is great advice, and I think you are spot on. I'm compiling a list of things to talk to my sister about.
I appreciate your practical assessment of the situation. Your perspective tallies closely with mine. People get sentimental about caring for old folks, but mostly it is a lot of hard, stressful work.
I'm now in the 13th year of looking after aging parents and to be perfectly honest, things do not get better. However it is possible to get better at dealing with the challenges that arise as part of the arc of caring for the aged.
Looking at things clearly and realistically and then preparing early is critical to good longterm care for aging people.
So is respect and compassion both for one's aging parents and, then when things get rough, for oneself, too.
OP should not hesitate to make use of memory care and/or full support aged care when it becomes necessary. This type of care is specialised and there is no shame in using it when it is needed, and it will free OP to better enjoy what time is left with their parents.
As someone who did care for a parent who was living (and then dying) with ALS, I can say it does get better. They eventually die and are free of it all. And then, after a few years of therapy and rebuilding a normal life, I have mostly been able to move on with my life without centering everything around being a caregiver. Of course, just in time, my remaining parent has been diagnosed with metastisized lung cancer, so who knows what the future holds.
So sorry to hear about the new diagnosis. I worked with a company that supports caregivers in North Carolina, and the founder named the company AKALAKA, which is an Igbo word that means "hands" but also "destiny" because it's all of our destinies to give or receive care during our lives. But I hope you can find a peace outside of that role.
Friend, I feel so much for you. Despite your difficulties, I am glad that your parents are now close to you and your sister. All these dynamics in your parents marriage were no doubt present when they were far from you; it's just that, now, you have to not only see them, but become entrained in them. Even so, how much more painful it would be to become acutely aware of their condition and be, at the same time, unable to provide for them any support or comfort.
Your parents have had to sacrifice a lot to retain what little they could and also to provide for you the bounty of being close to them during the waning days of what appears to have been a full and active life. It comes to mind that even the most wealthy and powerful will eventually move from their mansions and palaces to a box no bigger than a coffin. Downsizing towards the end, while painful, is also natural and inevitable and is no sign of failure or shortcoming on anyone's part.
My parents are, in some ways, in a similar situation. They live in a nearby nursing home and are cared for better than anything I could ever hope for. They are happy together, with many of their recurring sources of friction smoothed by my father's declining faculties. But my mother, despite her great infirmity, still has her wits about her and wants to get out and about. Dad can't. A little, but not much. And really, mom can't either, but that doesn't stop her from wanting it.
But when they moved in with us, ten years ago, man, that was crazy. Getting my parents to move in with us as I tried to make sure they didn't die while hundreds of miles away was such a hardship. I had my own naive notions about my dad helping out around the house and my mom helping with childcare. Getting disabused of these fantasies was a process that took its toll on us all, but I wouldn't have had it any other way. They wouldn't be where they are now without it, and I wouldn't have them anywhere else.
I could go on about this forever, but suffice it to say that the decision to bring your parents close to you in their closing days will exact a heavy price on you, as you are, clearly, already well aware. However, in exchange for this hardship you will purchase, for yourself and for them, benefits and bounties that will, in due time, far outweigh the difficulties you will have to endure presently.
I am a transplant to the city where I live, and I have always been jealous of the people I know here who have two or three generations, childhood friends, and siblings all local. We have had to forge our own connections. And it has not been easy. I'm not sure it is anybody's fault, but we did move away, and they did stay, and I did tell them many years ago that I would never raise my daughter in East Texas.
I know my parents are well past the childcare helping stage, but I see it as a loss that they did it get more chances for that when they (and we) were younger.
Thank you for your kind words!
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That they do not primarily need care or solutions, they need to feel validated. They want to remain clear headed adults: strong and healthy, capable of making decisions like judge right from wrong, and can take actions that solve their own problems. Now, the reality is that they can't do some of these, and will slowly lose them all. But you remember when your child was young right, when they had their "do it myself" phase? It's like that, only in reverse. Your parents' aren't gaining experience and knowledge, but they are retaining personhood, dignity, and honestly some needed challenge in their day. If they ask for help absolutely offer but if they are.....kicking a can down the road or struggling or in denial or making affordable mistakes..... Let them..
Instead of offering solutions, paying for and arranging care that go unused or receive poorly or downright have a fight over, I've learned to instead ask my dad, wow that sucks, what's your plan? And 9 times out of ten he's actually got big (I didn't say realistic or good) ideas. He's been thinking about it and he's got stuff he wants to try (even if it's just to think about it some more). Sometimes he might say don't know, and that's when I can offer solutions that he'll then ignore, but this time he might consider it along with the plain denial. Success.
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Religion. There no other way to sugar coat aging and death: without religion, for me, aging is ugly and pointless and torturous and we should all be gentle put out of our misery as soon as our value as elders diminish or once we've logged tribal knowledge to someone else.
On a less controversial note. You know how weddings are sometimes not for the newlyweds but for their families to gather and celebrate? Aging is like that. And the funeral at the end too. It's not just for them, it's a way for you and me to make sense of existence, consciousness, human relationships, love, and the fleeting yet one directional travel nature of time, and the sure march towards heat death of the universe via entropy. So broadly speaking I would say the best resources here are spiritual or metaphysical.
The resources that they want. See answer 1. Edit: MimicSquid is correct get financial and medical power of attorney ASAP -- but only if they want it. If they don't want it, honestly by this point of my journey I'm prepared to not fight him even on this.
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I thought about getting into huge amount of debt to move closer. I seriously contemplated buying property in forest fire prone interior BC to be able to drive 5 hours every weekend way one to be closer. My sister [edit] did a lot more, but while he didnt initially resist her efforts, he ultimately declined because it's not what he wanted, however optimal it might be to any outside observer.
Parting advice. The bulk of aging parenthood is about accepting: there are no good moves, only less bad ones. And accept that the pool of less bad options will diminish over time, sometimes in big leaps. Most of the time less bad means whatever makes them happier, NOT most optimised or even safest. Lean on your therapist, and your friends who are going through this, or even myself as an Internet stranger if you like. Lean very very very gently on your spouse: aging stress is about helplessness, and watching you be helpless can create secondary harm in helplessness. Your friends with healthy parents won't get it, forgive them and be there when it's (Lord willing) finally their turn.
Focus on good cheer and bring up good memories often.
As the "bad child" living on the other side of the continent, the suffering of helplessness is real. But I'm slowly learning still, to let go of bargaining: if only I can move closer, if only I can get him in X, if only the diagnosis of Y... That's all bargaining. Treasure the time you have means truly enjoying time that you have: listen more and nag less. You're not their parent and it will make you both miserable to pretend to be. There's so little enjoyment left for them compared to us middle aged children, our job is primarily to help them enjoy what's left.
I've had to learn that some of the biggest self sacrificing things we do is an attempt to use our own externalized and visible pain to match the internal pain we are feeling inside. These are rarely what our aging parents are truly asking of us.
This is good to remember. I have done a lot of work to instill a sense of both bodily autonomy and independence in my daughter. So maybe I can translate some of that over.
It seems harder to judge than it is with children, because the children start out helpless and become more capable, so judgement is about adding responsibility, but with our parents, it is about taking that responsibility away.
I know we are far apart on the religious spectrum, but I have found myself close to reaching "the end of myself" and thinking more about my need for spiritual support.
On the topic of being put out of our misery, this and a few other experiences have convinced me that for myself at least, I want to be able to choose the time and manner of my own passing. Not any time soon, mind you. But then, I often wonder what that diminished capacity will feel like from the inside, and whether the things that seem like they would be unbearable now will seem unbearable then. So hard to know!
I think this is why we have a diversity of experiences, because we can all learn from other people's, despite only being able to go through life once. Through love, we spend time with others to "get down to their level" and learn a bit of what it is like for them. With raising children we are able to get a tiny rear view glimpse of ourselves, an alternative universe view of what if we had been parented the way I wanted to be parented, and a preview of what the person may grow up to be like (with maybe their children) when we are gone.
With aging, if we're so lucky, an elder can show us quiet dignity, the endurance of the human spirit, and the strength of human love for one another.
Two personal storie that convince me the truth of the following statement:
My partner's maternal grandfather, Papa, had a degenerative disease. Towards the end, one time when we visited him at the care facility, he could no longer recognize my partner nor his mom. We were moving from his room to the lobby downstairs for tea, and when we got into the small elevator, Papa looked around, smiled, and said, "I dont remember who you are, but I love each of you very much". Through this and in many other small ways, we all know that Papa is still himself, that time and diseases cannot break the divinity within us which is eternal.
My mum died when she was only 62, after a 15+ year rollercoaster of decline/some recovery from brain tumours / cranial surgeries: because she was so young and one could never tell how much functionality she would regain after a big treatment option, mentally I threw in the towel for her so many times and each time she proved me wrong. At her lowest points, she was robbed of any body autonomy, her ability to judge reality from delusions, and even her personality -- but when she bounces back she's still herself. It's like she's playing peekaboo with me as a toddler and I'm amazed that with hands covering up my eyes she's still there time and time again. Maybe aging is a way of teaching us the eternal soul form of object permanence: planets and stars are fleeting, the human person is forever. We had some merciful final years where only her body was limited. Anyway, when we said our final goodbye, she had no idea why she's in hospital or what happened over the last few days, but thankfully she knew us. She asked, what day (of the week) is it? We said Saturday, then she said, oh, good, be sure to go to Church tomorrow. With her very last breath she retained what was core to herself.
I was a proponent of choosing my own time and the importance of dignity and the avoidance of suffering being paramount of our duties to one another. Papa and my mom have convinced me otherwise.
ANYWAY. Your mum and dad are still here, they love you and you love them very much. It's okay to let them go ahead and pick the wrong towel or choose a bad service or make dumb non optimal options. Let them. Remember your own teenage rage, between feeling like you're perfectly capable and not knowing what you didn't know. You and I are "one and done" so we didn't have to put up with kids fighting amongst themselves so here you are, enjoy the ride :) they might bicker, let them. It's okay. It'll be a long one, and you're not trying to grant them eternal youth and immortality, you're just trying to make some good memories while you can
This topic hit close to home. I don't have any advice unfortunately. I'm in a very very similar situation with an aging parent who was diagnosed with Parkinson's a few years ago. I think I'll be keeping an eye on this thread. I can only offer virtual hugs and encouragement at this point u/first-must-burn. I wish you all the best.
Virtual hugs back to you!
What does/did your father do outside of work? Continuing hobbies he did is good for keeping him occupied and IIRC can help slow dementia progression. No hobbies (and no, TV watching does not count) is a speedrun to an early death. Keep your mom engaged in her hobbies as well. Is there a book club in the new city she could join? Would give her a reason to leave the apartment for a few hours.
Start planning for hospice/palliative care now. If either of their conditions decline and it gets to the point that death is more likely than not, having a plan in place and being able to transition them into that care envelope quickly will make everyone more comfortable.
My grandmother (Nana) passed last year, and it was very hard on my mom and my aunts. My mom spent a month at the nursing home (that we got Nana into after her last hospital discharge due to the poor state of the house) with her, and was there when she died. Fun fact, apparently you can get superhuman strength near the end, because she kept trying to get out of the bed, and it took three people to get her back in. The fentanyl patch was a definite plus for pain management. The fact that your parents are in a living facility is much better, as they won’t have so much house to manage (Nana was stubborn, and refused to move into one until after her last hospital stay, and even then it was initially “temporary), and have better access to care.
Unfortunately, my father's main hobby was work. Especially with the cancer drugs over the past 16 years, he pretty much practiced and came home and went to bed. I don't know if there would be a place where he could volunteer, maybe a shelter. That is a good idea.
I think you're right that we're lucky they made the jump straight to a care facility, but I think the abruptness of it has caught me off guard. If they had moved house but kept their own residence, then later moved to a care facility, it would have felt more gradual. But I am sure it will become "normal" soon enough.
Work with your parents to find something interesting for your dad (definitely try to avoid imposing one). There has to be at least one hobby he’s thought about doing (ask him!) or did fifty years ago that could work. Social is preferable, but even solo hobbies are better than bed- or couchrotting.
One thing I forgot to mention: plan for the scenario where mom dies first. That happened with my uncle’s parents, his dad died before mom, who had Alzheimer’s, and it was really hard for her and the family. Being in a facility will help, but it would still have an impact.
If you want to talk more feel free to comment here or PM me.
Thank you!
Sorry to be blunt, but I feel like something is missing here:
They are dying.
Most of us are, obviously, about to die at some point in the future.
But you and your parents are aware that they are dying fairly soon (at least your dad).
Whatever you need to do with them or ask of them. Do it now.
There are, most likely, already regrets between you and there will likely be more. But you are able to make your peace with them while they are alive if you rise to the occasion now.
Also: have fun with them while you can, vacuum their minds from all nostalgia you can.
I have to disagree here, not because of the bluntness but because of what degenerative diseases look like. OP's dad is no closer to dying than his mom or you or I. Yes I agree with the carpe diem etc but I don't agree with the implication that a disabled person isn't any longer a person.
We tend to imagine ourselves as ghosts in a shell, that when our memory goes or our personalities or abilities, our personhood dies. This is not clean cut like that in real life: someone might lose pieces and forget who you are today but be back tomorrow and still have a lot of fun. There is also a quiet dignity and grace to be learned by being with someone who used to be able to do much more with you, who still might a little bit tomorrow. When we are sleeping we still expect others to treat us with respect. Before we were able to form memories or words, use the toilet, or pick up a spoon, or focus our eyes, our parents treated us with love and respect as a person -- it's now our time in return.
I am fortunate that the dementia is still in the early stages, so it is still visiting him, talking with him, laughing with him. And my mom too, though my relationship with her has always been different.
I don't think it's so much that I have unfinished business with them. A few years ago, I did a lot of work helping us all navigate a rift between them and my sister. So at that time, I did have a chance to make some adjustments in the way I saw and understood them. I think that this phase is probably the same kind of thing, but different in degree.
But I will take your advice to heart.It is a good thing to bring up with my wife and my therapist to dig down a bit and see if there is anything "unfinished" that I have been putting off.