Caregiving

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it may be dreadful to be old but it’s worse not to be young  ~E.E. Cummings (American poet, author, playwright), “Jottings,” in Wake, 1951

Lately, I’m seeing more and more mostly middle-aged people taking care of their aging parents.

In church. At restaurants. In grocery stores, medical facilities, parking lots.

I used to be one of those caregivers before Mom passed, but when you’re waist-deep in the weeds, it’s hard to notice how many others are in there with you.

Now it all comes rushing back.

Carers almost uniformly look haggard. Worn out. Exhausted. Frazzled. Hopeless. Sometimes even angry.

Did I look like that? I suppose so.

On the other hand, their “patients” appear blissfully oblivious.

Maybe they’re focusing — hard — on staying alive. Or they haven’t a clue how tough it is, doing for a parent when you’re the “child.”

I think my mom realized — probably because I told her a thousand times! — how hard it was, and I know she hated being a burden to her loved ones.

But caring for an aging parent is one thing. Others are taking care of a special needs child or young adult; spouses are taking care of their ailing significant other.

Many of these carers are trying to juggle their own employment, household duties, physical needs (like sleep and exercise), while they’re taking care of someone they love.

There aren’t enough hours in a day for all that must be done, but they’re giving it their best shot.

I never expected or wanted to be a caregiver. It wasn’t modeled for me, wasn’t something I trained for.

That’s pretty typical. I won’t bore you with the statistics (which might be interesting if you’re in the “misery loves company” camp); suffice it to say, there’s a lot of unpaid care going on in this country, with folks sacrificing their own needs/wants to tend to a parent, child, or spouse.

Looking back, I recognize I needed help but wasn’t getting it, partly because I didn’t realize what a strain I was under, and also because I didn’t have the time or energy to try to find help.

But the main hindrance, if full truth be told, was that Mom didn’t want anybody except me caring for her.

I didn’t know what I was doing, yet Mom said it was good enough for her. And she systematically ran off all the help I tried to hire.

I could go on and on, but before this gets too long, I wanted to offer a few suggestions to those who are presently caring, as well as to those who will be caring sometime in the future:

1) Rest assured, you’re doing a good thing. Yes, it’s hard, but that patient of yours values you and your help. And how nice not to be weighed down by the guilt of abandoning a loved one in their hour of need.

2) Remember to take time for yourself. Caring is hard. But you can’t care properly for someone else if you don’t first take care of YOU. Schedule respite care so you can regroup and escape the trenches once in a while.

3) Don’t be timid about asking for help. Whether it comes from family and friends or from organizations, help is available. No one person can be the be-all and end-all for another; even a little help can buoy you up enough to continue carrying on.

4) Accept that this is a temporary situation. Either your loved one will mend and return to self-sufficiency, or death will come calling. Whichever happens, you’ll never kick yourself for doing the caring thing, the loving thing!

Do you have any other tips/advice for caregivers?

23 thoughts on “Caregiving”

  1. Debbie, your post hit home for me because my dear friend Diana, who’s son is low functioning autistic, is going through a rough time since her husband passed away; leaving her with total care of her son. Not only is she caring for him 24/7, but she also has total responsibility of caring for home duties.

    She and I spoke on the phone a few weeks ago and she sounded strained and worn out. Thankfully, she is planning a weekend getaway to a quiet spot she likes to go out in the country for some self-care; leaving her husbands’ family to care for her son.

    It’s been extremely tough for her this past year and a half, but she’s moving through it with grace.

    Thank you so much for sharing this post today. I plan on sending the link to my friend, so she can read about your experience. I know she’ll get a lot of support from your words.

    Hope you’re enjoying a great weekend, my friend. We’ve actually had some really nice “coolish” weather lately, which feels a bit like Fall moving in. Yahoooo!

    X

    • Thank you, Ron, for sharing your friend Diana’s story. She certainly needs to be very kind to herself, given the circumstances. Caring for a loved one while processing through grief can be awfully difficult, I imagine. Yes, do share this post and if she finds it at all helpful, then I’m glad I wrote it.

      We got a lovely cold front to slide through and, on its back side, we’re enjoying cooler temps and much lower humidity! It’s been so wonderful and just what we all needed. It was 56 degrees this morning — you just know the Monk was delighted to go for his walk in that!! I understand we’re sharing it with the eastern half of the country, too, so enjoy when it arrives. xx

    • It certainly isn’t. Especially for those without training. We muddle through as best we can and hope that’s good enough, but our loved ones deserve so much better. I wonder if other countries do a better job with this sort of thing?

  3. Having been through this sort of experience myself, I really don’t have anything to add. Your discussion and recommendations are spot on. The nature of the person receiving the care can vary considerably, and shape exactly how difficult the situation is, but the basic dynamics are the same.

    It’s also true that the sense of relief that comes when the responsibilities of caring are over shouldn’t be experienced as guilt. When the first hurricane arrived after my own mom’s death, my first thought was of how much easier evacuation was going to be. Of course, it got even easier once my beloved kitty was gone — and a friend who just lost an 18 year old horse that took considerable care (and a lot of money) took only a week to start thinking about (1) evacuation ease, and (2) selling her truck and horse trailer and buying a different car for herself!

    • Linda, thank you for mentioning that a sense of relief once the caring is over doesn’t mean the carer should feel guilty. I find myself having much more time to do some of the things I want to, now that Mom has passed. Oh, I still miss her and likely always will, but I’m stunned at how much time her care required. Not to mention the mental doubts and frets!

    • Aw, thank you, my friend. While I had zero desire to be a caregiver — along with zero training and experience — most of the time, I was grateful that I was able to help Mom when she needed it. There’s a lot to be said about doing whatever you can to make someone’s last years easier.

  6. It is hard, but as you say, it comes to an end eventually and then at least we can say we did our best, which is some comfort. It gets harder now that families are so split up – the weight often falls on just one person now, rather than having an extended family around to share it.

    • Yes, and even if the family is close by, sometimes they can’t get along or agree on big decisions … and that’s got to be hard for the person being cared for. It’s hard putting all the onus on one member, too, and then complaining when they “don’t do it right”!

  7. This is an excellent post, filled with good advice. I’ve not really been in that position, but know my time will come (unless I die before my husband). As I’ve mentioned before, my parents both died when I was quite young and I’ve sometimes told myself one of the positives (funny how you look for positives in everything) is that I’d never have to deal with them getting old. I’ve watched several friends deal with it and I know it’s not easy. Looking at it from the other side… I never want to be a burden on my children and have already given them permission to do whatever they need to do, even if I resist at the time. And yes, I do have advanced directives in place. (this conversation could go SO much further, but I’ll stop!)

    • I don’t want to be a burden to Domer, either, and I hope I can get lots of things settled before I get old. Of course, none of us knows the future, so I imagine it’s best to get our ducks in a row before, huh? I’m sorry you lost your folks young, Kelly. That must have been hard though, as you say, you didn’t have to watch them go downhill. We never have enough time with those we love.

  8. my husband took care of his dad while his dad died from cancer. It was very hard. He stayed there for 3 months, sleeping on the sofa next to his dad while his dad slept in a hospice bed in the family room. His dad wouldn’t let anyone else help either. It was tough. On the other hand both my parents died unexpectedly and none of us 4 kids was there. We sort of feel unsettled about that.

    • My heart goes out to your husband — but God bless him for doing that for his dad. I imagine it must have given him peace of mind in his final months. I know you lost your folks early, Dawn, and I’m sorry for that. Maybe it’s a good thing to always remember them as young people instead of having to deal with the challenges of old age? If they hadn’t died young, I suspect all four of you would’ve gladly cared for them as long as possible though.

  9. So true that there’s a lot of unpaid care going on in this country, and even if we paid loved ones for doing it there would still be no way to make it any easier emotionally. I’ve been through this too many times and now I’m dreading becoming the one burden to burden my children. Sigh. Your four suggestions are spot on. Nothing lasts forever and we’re all muddling through this difficult part of life as best we can.

    • Thank you, Barbara. I know we don’t want to burden our families with caregiving, but I pity the poor souls who don’t have anyone to look after them.

  10. This post is timely, because I’m assuming more and more responsibility for caring for my mother. She’s still mostly independent, but I take care of the upkeep of her apartment, pay her bills, handle her mail, bring her the groceries, clean out her fridge, take her to her medical appointments, remind her to tend to basic hygiene, etc. My sister does her laundry, and has been trying hard to give that job back to me, but I refuse to take it. Still, I know I’m lucky Mom is as independent as she is. What the future will hold is anyone’s guess, but I do know that it will not work for Mom to actually live with us. You gave your mom an incredible gift by all you did for her….I know it was hard….and your advice to others is very, very good!

    • Thanks very much, Ann! You’re fortunate in having a sister nearby who’s willing and able to help share the load. It’s definitely not a one-person job! I know it gives your mom great peace of mind, having both of you around to help her out. I’m glad to hear my suggestions were spot on!

  11. Getting my sister to help wasn’t easy, but I really did need some assistance, especially when my husband was undergoing cancer treatment. Now it’s the grandkids I share my attention with, but it all works out!

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