Longtime caregiver looking for support and coping tips

Posted by tim1028 @tim1028, Mar 20, 2022

I've been a member of Mayo Clinic Connect for several years, but this is my first time at this group. Here's my situation: I have been a caregiver for my parents, 4 years for both and 7 years for my mom alone ( she died in December). I also have been a caregiver for my wife for the past two years because of incapacitating Chronic Fatigue Syndrome mixed in with Long Covid symptoms. It has been helpful to see a therapist weekly, but I feel emotionally exhausted and feel like I have little in reserve to give. I work hard to take care of myself as well, but this is easier said than done. My reason for posting here is for support and encouragement from others in the same situation. And,too, perhaps to pick up some useful tools to cope with the difficulties of caregiving.

Interested in more discussions like this? Go to the Caregivers Support Group.

Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. Your post brought back many feelings from those years for sure. Being exhausted and empty was one of the toughest aspects of caregiving for me. It is a relentless undertaking and I wish I had some magic potion to share with you.

My dad was an alcoholic and one of the things that helped me with caregiving was from his 12 Step program and that was "one day at a time". I had to refocus my life from longterm to one day at a time. That helped me with the feelings I was having of being overwhelmed.

Also I had to teach myself that noncritical aspects of daily life could be allowed to go to the wayside without feeling any guilt. I learned to get along with a constant pile of laundry to be done, shirts that no longer got ironed, and looked at dust bunnies as a new kind of pet rather than a pest to be worried about.

I also printed out and taped a quote up in our kitchen which says "Courage doe snot always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'" It helped me realize just trying was often the best I could do.

I had to chuckle at your comment about taking care of oneself! If I had people tell me that once, I had them tell me that a million or more times — and every time they did it made me beyond crazy! Do people think just because a person is a caregiver they don't want to take care of their own needs too? I support that comment might have made them feel like they did something, but it surely didn't. At least for me, it didn't!

Caregivers can only do what they are able to. None of us are superman or wonder woman.

I am happy to answer any questions you might have about specific things or aspects of caregiving to help!

Strength, Courage, & Peace

REPLY

Hi @tim1028, I'm glad you hopped over to the Caregivers group. Welcome!
I hope you don't mind, but I changed the title of the discussion you started. I think there are several members here who have been caregivers to multiple family members and for a long-term commitment who would like to join the circle of support and tip sharing. In addition to @IndianaScott, I'd like to bring @auntieoakley @ls1313 @cindylb @dbirkel21 @l32 @maryflorida @jal333 @deek15redpeppers @julesa @hotfooted and other long-time caregivers into the conversation.

Tim, it is really hard to replenish the compassion bucket when you're a fulltime caregiver. I understand that feeling of being emotionally exhausted with little in reserve. Scott, I also get how hearing from others that you have to take care of yourself doesn't square with the reality of caregiving. It's near impossible. Oddly enough, I find brief moments of tending to my plants to help me. I've decided to call that my self-care. I can do it in stolen moments in between. The plants don't require a schedule that needs to be incorporated into the caregiving duties. But the minutes hear and then watering or pinching off the dry leaves, repotting, bring me peace.

What small moments help you take time for yourself, Tim, if even measured in minutes?

REPLY

a couple of thoughts:
I now have a small garden and I feel refreshed for a little while when I tend to the plants. Even when they might be droopy, I can help them. Sometimes just sitting outside with only the noise of the day around me, helps.

REPLY

I am the caregiver for multiple family members and my husband is at 12 years in another month. I couldn’t agree more with the other members who have posted. Yes, we all try to take care of ourselves but I find that statement unhelpful as well. I find it easier to manage my physical needs than my emotional needs. Sometimes, I just need a set amount of time where I know I don’t have to help anyone anyone or answer the phone (unless it really is an emergency). I might just sit with my headphones on and look at rock slabs, or spin yarn. If I can get an hour or so, I head to the barn and brush my horses, they make me forget myself and live in the moment. It isn’t that I don’t want to be there for my family, it is just that you never really relax and if you can say “ I have the next 10 minutes free”, you can relax for that 10 minutes.
I love what Scott said about chores. Suddenly most chores are not so important anymore. Clutter is meaningless, as is dust. I hire the kids in the neighborhood to do outside chores that are simple, they get spending money and I don’t have to worry about the grass, weeds, or whatever.
In the case of my husband, hard times come and go but he will always be unable to lift, push or pull more than 5 pounds so even when times are good, life isn’t really easy. I am grateful for every day we get together and will be blessed if I can take care of him another 12 years, but sometimes I just need that 10 minutes to look at rocks.

REPLY

Thank you to each and every one of you who commented. Knowing I am not alone is a strong comfort. And I gained some helpful insights from the kinds of things you do to cope.

REPLY
@l32

a couple of thoughts:
I now have a small garden and I feel refreshed for a little while when I tend to the plants. Even when they might be droopy, I can help them. Sometimes just sitting outside with only the noise of the day around me, helps.

Jump to this post

Heard a great show/podcast/radio on NPR, "What's Health Got To Do With It?" Last weekends discussion was about how helpful nature is while we are caregiving! "Nature Deficit Disorder" it was jokingly called. When you need that break as a caregiver, just take some time and look out the window and see nature. It helps!

REPLY
@auntieoakley

I am the caregiver for multiple family members and my husband is at 12 years in another month. I couldn’t agree more with the other members who have posted. Yes, we all try to take care of ourselves but I find that statement unhelpful as well. I find it easier to manage my physical needs than my emotional needs. Sometimes, I just need a set amount of time where I know I don’t have to help anyone anyone or answer the phone (unless it really is an emergency). I might just sit with my headphones on and look at rock slabs, or spin yarn. If I can get an hour or so, I head to the barn and brush my horses, they make me forget myself and live in the moment. It isn’t that I don’t want to be there for my family, it is just that you never really relax and if you can say “ I have the next 10 minutes free”, you can relax for that 10 minutes.
I love what Scott said about chores. Suddenly most chores are not so important anymore. Clutter is meaningless, as is dust. I hire the kids in the neighborhood to do outside chores that are simple, they get spending money and I don’t have to worry about the grass, weeds, or whatever.
In the case of my husband, hard times come and go but he will always be unable to lift, push or pull more than 5 pounds so even when times are good, life isn’t really easy. I am grateful for every day we get together and will be blessed if I can take care of him another 12 years, but sometimes I just need that 10 minutes to look at rocks.

Jump to this post

@auntieoakley You make many excellent points in your post, but one really struck me as super-valuable! The challenges of physical and emotional needs of caregivers! Caregivers can always use support, no doubt about it, but I've never met a caregiver who lacks compassion, desire, and concern for their loved ones who happen to be doubling as patients. To me, what does happen is we get physically and emotionally exhausted! That is very different than a lack of compassion, etc. When someone tells me I lack compassion I feel very negative feelings since, to me, it imparts a failure on my part and goodness knows no caregiver needs more feelings of guilt and doubt. We all feel as though we fail at times, but not for lack of desire, but out of exhaustion — physical and emotional.

One of the nicest things an old friend of mine did for me at the height of my caregiving demands was send me a few select clippings he'd find during the week that he thought I might find interesting. They lived in my bathroom so when I could I'd grab one to read and escape for a few moments. I really came to cherish those envelopes in the mail since I no longer got a copy of the newspaper and magazines just stacked up.

Often it is the small that can really help a caregiver!

Strength, Courage, & Peace

REPLY
@IndianaScott

Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. Your post brought back many feelings from those years for sure. Being exhausted and empty was one of the toughest aspects of caregiving for me. It is a relentless undertaking and I wish I had some magic potion to share with you.

My dad was an alcoholic and one of the things that helped me with caregiving was from his 12 Step program and that was "one day at a time". I had to refocus my life from longterm to one day at a time. That helped me with the feelings I was having of being overwhelmed.

Also I had to teach myself that noncritical aspects of daily life could be allowed to go to the wayside without feeling any guilt. I learned to get along with a constant pile of laundry to be done, shirts that no longer got ironed, and looked at dust bunnies as a new kind of pet rather than a pest to be worried about.

I also printed out and taped a quote up in our kitchen which says "Courage doe snot always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'" It helped me realize just trying was often the best I could do.

I had to chuckle at your comment about taking care of oneself! If I had people tell me that once, I had them tell me that a million or more times — and every time they did it made me beyond crazy! Do people think just because a person is a caregiver they don't want to take care of their own needs too? I support that comment might have made them feel like they did something, but it surely didn't. At least for me, it didn't!

Caregivers can only do what they are able to. None of us are superman or wonder woman.

I am happy to answer any questions you might have about specific things or aspects of caregiving to help!

Strength, Courage, & Peace

Jump to this post

Scott,

I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed with bladder cancer in August 2021. Although it’s been only a few months since the diagnosis, I have been feeling so mentally and physically exhausted and overwhelmed. I’m hesitant to share my feelings with my close friends because I don’t believe anyone else needs this type of negativity. I pretend I’m fine if and when I have a chance to get together with them. But I’m really not okay.
My biggest issue was when he lashes out on me because of his stress and fear of cancer returning, as well as because he suffers from the side effects of treatments. I tried and tried not to take any of these personally, but it is very difficult at times simply because I did not do anything wrong and I have my own feelings too. I do put myself in his own shoes but I still find it hard to absorb at times.
How did you cope and overcome all of the above? I’m at a point where I don’t even want to socialize with my close circle of friends because I don’t want to pretend all is fine with me, yet I really don’t want to let my negative emotions out because I’m afraid my experience will not do them any good.

Thank you for listening.
JW

REPLY
@naturalebyjas

Scott,

I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed with bladder cancer in August 2021. Although it’s been only a few months since the diagnosis, I have been feeling so mentally and physically exhausted and overwhelmed. I’m hesitant to share my feelings with my close friends because I don’t believe anyone else needs this type of negativity. I pretend I’m fine if and when I have a chance to get together with them. But I’m really not okay.
My biggest issue was when he lashes out on me because of his stress and fear of cancer returning, as well as because he suffers from the side effects of treatments. I tried and tried not to take any of these personally, but it is very difficult at times simply because I did not do anything wrong and I have my own feelings too. I do put myself in his own shoes but I still find it hard to absorb at times.
How did you cope and overcome all of the above? I’m at a point where I don’t even want to socialize with my close circle of friends because I don’t want to pretend all is fine with me, yet I really don’t want to let my negative emotions out because I’m afraid my experience will not do them any good.

Thank you for listening.
JW

Jump to this post

Not Scott, but someone who has had both caregiver stress and stress from my own illness. Oh, I tried the pretending route, and you are so right that it is EXHAUSTING – as much as the work of being the caregiver. I found one friend in whom I could confide. Not who I expected, but a rather new friend who had been through some issues herself. She provided that sympathetic, nonjudgmental ear (and shoulder) I needed in the moment. It allowed me to feel enough relief that I then was comfortable being among others. Her best advice to me was "Don't pretend you are fine, your friends know that you are not. Simply say things are very tough right now, I am really struggling. I NEED this break to feel that there is still something good in life. Can we please talk about _______ or something pleasant. If anyone wants to hear my tale of woe, give me a call later."
Wow! two friends called later to express sympathy, and one became my lifeline.
Can you think of one friend or relative who might be your listening ear?
Sue

REPLY
@sueinmn

Not Scott, but someone who has had both caregiver stress and stress from my own illness. Oh, I tried the pretending route, and you are so right that it is EXHAUSTING – as much as the work of being the caregiver. I found one friend in whom I could confide. Not who I expected, but a rather new friend who had been through some issues herself. She provided that sympathetic, nonjudgmental ear (and shoulder) I needed in the moment. It allowed me to feel enough relief that I then was comfortable being among others. Her best advice to me was "Don't pretend you are fine, your friends know that you are not. Simply say things are very tough right now, I am really struggling. I NEED this break to feel that there is still something good in life. Can we please talk about _______ or something pleasant. If anyone wants to hear my tale of woe, give me a call later."
Wow! two friends called later to express sympathy, and one became my lifeline.
Can you think of one friend or relative who might be your listening ear?
Sue

Jump to this post

Dear Sue,

Thank you so much for listening and I appreciate your advice, it means a lot to me.
I do have my closest friend, who knows I’m not okay, but because I am not willing to share any details with her, each time at the end of our meeting, she always says: “you’ve got to take care of yourself, I’m always there if you need me.” But I know she has her own set of issues too, and my principal has always been “ if you have nothing positive to say, don’t say it”.
I am trying meditation, learning to let go. But it’s difficult to let it go sometimes because I felt hurt by what my husband said. I tried to convince myself that that was not the real him, it’s the cancer.
I suppose I have no choice but to let go of my negative emotions, but it’s so hard to put the smiles back on my face when he says hurtful things.
Thank you for listening, I already feel better after reading your reply. I know I’m not alone.
Cheers

REPLY
Please sign in or register to post a reply.