No one is useless in this world… who lightens the burden of it for any one else. ~Charles Dickens, English writer and social critic, in Our Mutual Friend, 1865
I just want to be a daughter. Is that too much to ask?
For nearly two decades now, I’ve taken care of my mom.
At first, it was fairly easy: transport her to doctor and hair appointments (she doesn’t drive), cook a few meals when she didn’t want to, iron (she’s always hated to), and so on.
But as time went by and Mom got older and feebler, I found myself doing much more: all the grocery shopping, much of the cooking and cleaning, dealing with handymen and contract workers (electricians, plumbers, yardmen, and more). I had very little time for me, and a lot suffered, including my writing, my web design business, my inner calm.
Still, I carved out a niche for the things I refused to give up — daily exercise, eating healthy meals, sleeping sufficient hours, music (Band and practice), blogging, Church, and playing with Monkey.
Recently, Mom had to go to the hospital and upon her release, she was transferred to a local rehab facility. The idea was for her to get stronger and return home.
Insurance (Medicare) is the determiner of when a person’s rehab stay is up, and she was sent home last week.
Still needing care.
Personal care (bathing, ambulation, toileting) as well as help with laundry, meal preparation, light housekeeping, appointments.
But try to find care in a small rural community! We have a steady parade of home nurses and physical therapists, but eventually their time will run out, leaving the burden on me once again.
And Heaven forgive my “selfishness,” but I don’t want to do it anymore.
Is it asking too much for me just to be her daughter? And let a paid helper do the rest?
One of these days, Mom won’t be here, and we’re wasting valuable time in the day-to-day minutiae of living.
I want to sit beside her and hear the old stories again. To write down the special recipes she carries in her head. To talk about her memories. To do the things others have told me they miss, now that their moms are gone.
Caregiving eats up all the time I have, and I find myself resenting it.
Before my dad passed, I didn’t have a chance to just be a daughter either. Oh, sure, I was there for him and regularly sought his advice in matters of business or another area of his expertise. But I didn’t ask him the hard questions, like if he was afraid or worried or sad to see the end of life drawing near.
Not that he’d have answered. He was a very private person and didn’t go in much for reflection.
But I feel remorse over it, and I don’t want it to happen that way with Mom. And she’s not keen on going to a facility (if a nice one even could be found without forcing her to relocate out of town).
It’s a dilemma for sure.
Lightening the burdens of another is a high calling, one that demands great personal sacrifice. And finding just the right caregiver is a Godsend, freeing up a family’s time to say proper good-byes while the necessary work is getting done.
Medical science has made it possible for us to live longer than ever before. Sadly, no one seems to have figured out just what that’s supposed to look like.
My heart goes out to you, Debbie. While every situation is different, I went through this with my father from 1991, after my mother died, until 2013, when he died. At first it was giving him rides and washing his dishes and doing his laundry, but after he fell in 2001 and spent time in rehab he needed more and more care at home as the years rolled by. I get where you’re coming from. For the last few years we hired in-home help and I wish we had done it sooner so we could have had more quality time together than we did. Caregiving is so difficult and there are no good choices. We do it for love but it makes it impossible to keep one’s life in balance. I hear you!
Barbara, thanks for sharing your experience. You did a noble thing for your dad, and I’m sure he appreciated it. But it’s still hard. We don’t have time to pat ourselves on the back and feel good; there’s too much to do. The best we can do is try not to get overwhelmed by the needs and reach out for help as soon as we need to. Sometimes, it takes an “outsider” to provide the right kind of help.
Debbie, I don’t think you’re being selfish at all. Not in the least. And to be honest, I would feel the things you’re feeling right now as well – resenting the caregiving eating up all my time.
A woman I work with is going through the same thing at the moment with her mom. And she too feels as you do. She is having to do everything for her mother, plus work, plus take care of things in her own life. She’s exhausted and frustrated. And I don’t blame her. That’s a lot to handle for one person.
And you’re so right, medical science has made it possible for us to live longer than ever before. But at the same time, they haven’t figured out just what that’s supposed to look like.
As your reader Barbara shared, caregiving is difficult and there are no perfect choices. We do it for love, yet it’s hard to to keep the balance.
Thank you for sharing and being honest, my friend. This topic needs to be shared because it’s a realistic part of life.
Sending you much X
Thanks, Ron, for trying to make me feel better! I know in my heart that you’re right — there are only 24 hours in a day, and caring for an elderly person eats up a lot of time. Nevertheless, I’m not sure I could face myself in the mirror if I didn’t at least try to keep Mom comfortably at home for as long as possible.
I hadn’t intended to unburden myself in this space, but sometimes, we’ve got to let go of our loads. And what better place than this supportive, encouraging Blog-land?! After all, many of us have (or had) elderly relatives who needed care, and if I can glean some wisdom and advice from those who have trod this path before me, I’m calling it a win! xx
Your feelings are normal, Debbie, and unfortunately, the alternatives are few. You have a burden that you simply cannot lay down. Maybe expressing your feelings here will help a little. I hope so. In the meantime, I hope you can take some comfort in knowing you are doing the best you can for someone who loves you.
A burden I cannot lay down — hmm, I hadn’t really thought of it that way, but you know, John, you’re right. Somebody’s got to help her out, and my only sibling is 700-plus miles away. I thought I’d let my feelings out in a poem, but I got bogged down and figured this was a better vehicle. Thanks for reminding me the love goes both ways!
I think talking about it even on your blog helps. Bless you.
It does — kind of like therapy, without the couch!
Or the hourly bill.
John, Ron, and Barbara have pretty much expressed what I was thinking as I read your post. Best of luck finding a solution. I wish our country did a better job of caring for elders because the time can come when it’s too much for one person, especially when elders can no longer take care of their personal needs. Hugs from Maine. Keep us posted.
Thanks for the encouraging hugs, Laurie — I needed them today. I, too, wish we as a nation did better for our elderly residents. When you look at the statistics, we’re all getting older, and not everyone has someone they can count on (or are willing to allow) to care for them. So many nursing homes aren’t ideal either: too understaffed, for one thing. We focus on so many other issues — education, defense, infrastructure, and so on — but nobody wants to think about getting old. And nobody squawks until they start talking about Medicare and Social Security.
This is a hard dilemma. No one can give you the perfect answer, and I know you’re mostly venting anyway. We had to go through this with Aunt Vi several years ago. I know how hard it is to find good care, and how expensive that care can be, AND how insurance controls the whole thing. Maybe there are tasks you’re doing for her that don’t HAVE to be done. Like ironing. Spend the time you’d spend ironing with her talking about the old days instead. Or….if you must iron, talk about the old days while you’re doing the ironing. I know…nothing will ever be the best solution, but we all are sending you our best vibes for a settling for you and for your mom.
Dawn, I really needed to vent today — thank you for recognizing it! I imagine you’re right in saying there are likely tasks that don’t mean as much to her as they do to me, so they could be eliminated. Sadly, she was the one who set the bar so high, as to cleanliness, nutritious meals, and such. I’m just treading water, trying to keep up with her high standards. (And that’s probably why she’d prefer I keep doing the caregiving, rather than hire somebody — because she can’t run them the way she does me!)
Let me tell you one story. My father-in-law was dying from cancer, refused hospice so was being taken care of by family, his wife, my husband and my husband’s brother. 24/7. They finally hired in a care-giver to help in the mornings getting him cleaned up for the day. His wife heard him tell the woman not to shave him because ‘my wife will do that.’ She had to outright tell him she couldn’t do it all anymore and he needed to let other people do their jobs. Of course he’d rather she did it all, but it’s not possible, even with family helping. You can only do your best, and you’re doing that. But make time to savor moments with her…those things you will remember later.
Boy, does that sound familiar! Mom seems to think I’m the only one who can “do” for her. It’s not a question of inability to pay a caregiver — it’s more that she doesn’t *want* to have to pay them! Ah, well, you’re right, of course — savoring moments will become good memories one of these days. Thanks again!
You have my sympathy, Debbie. Caregiving is a tiring and largely thankless job. I hope you can find the support you seek. 🙏🏼💕
Thanks for your understanding, Eliza. It’s not easy — I guess nothing worthwhile ever is, right? But at the end of the day, I know I’m doing the best I can for her, and I don’t have to feel guilty for sticking her in a home and walking away.
Oh Debbie, I do sympathise! My mother and I were very close after my dad’s death when I was in my mid-20s. In fact I would have classed her as my closest friend as well as my mother, and I gradually did more of the housework, shopping, etc., for her. But when she reached the end of her life and needed personal physical care, I’m afraid I found that I just wasn’t cut out for it and wasn’t capable of doing it. And yet, like you, finding paid help or help through the state medical system seemed impossible. Apart from anything else, I found that I felt guilty all of the time, because I wanted to do a better job for her than I could. And it undoubtedly changed our relationship, not enough that we stopped being as close but it definitely became more difficult to just have a chat and share our thoughts and so on. I do hope that you and your mother find the caring help that you both need so that you can go on having that mother/daughter relationship which is so precious.
You too, huh? Well, it helps me a lot to hear I’m not the only one, FF! I just can’t do the personal care, and poor Mom knows it. She’s managing (barely), but I can foresee a day when she’ll need more help than I can provide. Thank you for all you did for your mother. It’s not easy, but I’m sure she was grateful. I’m trying to crush feelings of guilt for not being able to do it all. None of us can, really, and doing something is so much better than doing nothing.
I so emphathize with you Debbie. I hope you can find someone to care for her so you can visit her and return to being a daughter, not a full time maid and nurse. It is too much to ask of you.
What’s hard, Cindy, is trying to do this without knowing what I’m doing! I wasn’t trained as a caregiver, nor did I have that modeled for me (my parents stuck their parents in nursing homes). I’ve read that the important thing for a caregiver to remember is to take care of themself first. When you’re trying to be selfless, that’s hard. It’s hard also when you’ve got a “patient” who’s as demanding as Mom can be. I’m afraid I’m Grumpy Bear more than is good, and that’s when I have to separate myself for a wee spell (like sitting outside in the sunshine). She can do without me while she’s sleeping or reading!
I was caught by your comment about your mom maybe not wanting paid help because she couldn’t run them like she runs you. One of the first things I had to do with my mother was begin setting limits. What are parents want and what we can provide sometimes differ, and sometimes differ considerably! Don’t be afraid to set limits — and don’t feel guilty when you do!
Ahem. “What our parents want…”
HaHa! I knew what you meant. Isn’t it funny how our fingers work slower than our brains?!!
That’s good advice, Linda, and I needed to hear it! Yes, I’m trying to set limits. There are certain things I just won’t do, and Mom’s aware of it; however, that doesn’t stop her from trying to guilt me into doing them. I regularly remind her that when this all gets to be too much, she’ll have to hire outside help or go to a facility (neither of which she’s crazy about). Then, too, my only sibling has regularly volunteered to pull her fair share of the load, but Mom won’t hear of it. She seems to think that my meager efforts are sufficient. Sigh.
Your life has been disrupted. The time is difficult, your feelings are normal, and you are not selfish. Being a caregiver is difficult, but you also want your normal life – but that’s not going to happen. Yet, when you get the time, balance is still important – but only in the sense of efficiently using the time you get.
I think about a friend. She’s in her upper 60s, but has her mother of a ripe 102 living with her. Friend does what she can, but her mom refuses to go into assisted living – thus trapping the friend who wants to have a life.
My wife’s father is 93, but he’s in assisted living. My wife is his advocate & runs his finances while also does his laundry and takes him to various medical appointments. At least she doesn’t have the daily worry that my friend has.
Bottom line – your feelings and frustrations are real – so he patient with yourself!
Thank you, Frank. I so appreciate your sharing your experiences and those of your friend. “A ripe 102”??? Oh, dear, and to think this might be my existence for another span of years? Argh!! Getting old shouldn’t be this challenging, should it? I mean, I’m glad we’ve had so many years together, but when a person becomes unable (or unwilling) to do things for themselves, they need to find somebody to do them — and that “somebody” shouldn’t be their offspring (unless said offspring really wants to do it). We don’t have children so we’ll have maids and nurses in our old age!
We don’t have kids … so we realize our future will probably lie in the decisions we make.
Even if you had kids, you really shouldn’t count on them providing maid and personal care help. I sure don’t want my Domer to have to do that!!
You’re so right about how people are staying alive much longer, but we don’t really have a structure in place to make sure they get the care they need. Good care facilities are hard to find (and the staff is under-paid, so there is a lot of turnover) and often the burden falls on the family member who is closest by. In this case, you. It’s so hard! And I’m so sorry.
You’re not selfish at all to want a life of your own, and you deserve one. Is it possible to hire someone just part-time, who could give you a break a couple of days a week, or a few hours each day? Or have your sibling come and stay for a little while and take over for you? The key, as others have suggested, is setting boundaries. Recognizing her needs and your needs, and trying to find a way to balance the two. You are doing a wonderful thing to care for your mother, but you also need to care for yourself…and that may mean your mom has to make a few sacrifices too. Sorry for my long-winded comment. (Can you tell your post struck a chord with me?) Good luck!!
Ann, thank you for your thoughts. Yes, I was hoping my post would open up a discussion. After all, most of us have elderly relatives (or will *be* the elderly relatives, if we live that long!), so it’s a topic that needs some addressing. I’m doing my best to balance Mom’s care with my own needs, but I can see where hiring someone to come in — even for a few hours or a few days of the week — would be a big help. It’s not easy to find somebody like this, but I’m going to keep trying!
Deb…I did that for years for my mom and dad, then just caretaker for my dad for 10 years. Not only did I live with him just to care for him, but he had my sister, her husband, my niece and her husband and her 2 daughters living for free in the basement. My father died 8 years in, and all those relatives came after me and I had to get an order of protection. Because of covid the probate lasted 2 long years of torture and legal fees wound up costing me $10,000 and the loss of $70,000 for not being able to sell the house right away because of the reverse mortgage accruing interest. Moreover, I was sick myself!
I was so worn out from the caretaking. It’s not easy. I cried a many times. My dad was 94. I know everybody has the right to live their life to the end. I had times that I prayed and told God I need more spiritual juice to get me through it all and He always gave me more. I did question God about it and felt bad about wanting for my stress to be over knowing what that meant. Even after he died I had 2 years of being tortured by bad relatives and supporting them all financially.
After it was all over I cried in my new apartment from sheer relief from it all. Today 2 years after it’s all over, time has healing the stress and the hurt. I pray that you get the extra strength and relief you need. Being a caretaker is one of the MOST demanding jobs that anybody can do. Forgive yourself for your feelings because they or NORMAL!!!! Praying for you!
PS…Now I find myself getting ready to have my kids caretake me and my husband in the near future. We are both sick. My 6 kids told me don’t worry. I DON”T want to be a burden to them!!!!! But I will have no choice! 😦
Tanya, thank you for sharing your caretaking experience. It helps to know others have survived this, even if it wasn’t easy. I know exactly what you mean about praying for the stress to go away, despite knowing it only will when Mom passes. Then again, she’s been in some pain and feeling so poorly that she says she’s ready to go.
You’re blessed to have six kids willing and able to help you and your husband in your senior years. I imagine it will be easier when they share the burden, instead of having it all thrust on one’s shoulders. Hang in there and God bless!