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Any survival tips for caregivers that are burning out?
Plez
1 Posts
As a caregiver, I can really relate to the pain and emotions a lot of you are going through. We are each different, so there is no one size fits all experience from the impact of cancer. I’ve been caregiving for a long time with many different people I have loved and known before they passed, but I don't know everything and I'm open to the idea that others have advice to share. So, I decided I'd ask fellow caregivers for their thoughts on surviving caregiving when you know your old ways of doing it aren't working for you anymore.

The phrase “look after yourself as a caregiver” came up starting in my 20s, but I had no idea what that meant. In my 50s, I’m still scratching my head. The books and pamphlets, and now the web pages all say the same thing – take care of yourself so you can be there for the one you love. I can recite the general comments from the literature, but wow do I struggle to live it these days.

I have no regrets stepping up to look after a loved one, none. It’s an honour, not a burden, but the experience can be punishing. I always felt challenged because I knew I was struggling with looking after myself. The literature makes it sound easy – that if you know you “should” be doing it you would be ok. We are all different, and that includes how we need to be cared for ourselves. I hear those words and when I think about myself I blank out.

I know that stress is toxic if it builds up. It eats at your body, even if your mind is holding things level (or at least you think so). And it’s sneaky at how slowly stress can grind on you, other times it just grabs a bat and goes to town on you.

These days, I am by my wife's side, who was diagnosed with inflammatory breast cancer. It went to stage 4 by the 5th year post diagnosis and has been flirting with her demise for the last 3 years since then. I’m still searching for ways to keep up the energy and not crash and burn as I look after her.

I got such heck from her recently because that was exactly what happened to me in January.

The doctor at Emergency was kind when he hustled to save me from a medical emergency brought on by all the stress I was trying to manage and a drug reaction to my changing diabetes that the stress aggravated. I didn’t recognize my health crashing that badly before it tried to kill me, but the signs were there if I knew what to look for. Unfortunately for me, I didn't. I had a few remote calls with physicians to talk about some odd changes and concerns last summer, but with Covid protocols nothing happened in person and lab work wasn’t happening.

Ah, stress and diabetes. Every time something blew up hard with new extreme stress in my life, I jumped to the next level of broken in the diabetic realm. Doctors call it a classic textbook response to extreme stress. The greater the stress, the worse the diabetes became. Over the years, the cumulative damage has really reduced my capacity. My wife was close to passing from IBC a few times since she was diagnosed, and to be honest, each time I feel like a yo-yo slamming into concrete when she goes critical. She has closed her world to her friends, and most family wants to keep their distance because seeing her ill is too hard on them, so it's really just the two of us 99% of the time.

No matter how conscious I am of the need to look after me, I just struggle. My parents survived war, homelessness, and brutality in their past so independence and personal fortitude were cherished attributes. Growing up it was not ok to show weakness, and that included love and affection for yourself. I can coordinate multitudes for the ones I help look after and that comes naturally. I can be strong, tough, and very loving to others, but nobody can guess that I need help because I don't show it if I can help it.

I’ve tried asking social workers, spiritual leaders, doctors, therapists for help now and then, and they all discounted it as “impossible” that someone that looked as strong and together as I presented myself could be serious. Inside I was running on fumes, grinding my gears, pushing myself well into unhealthy conditions, and feeling ashamed when they would scoff at my request for help. The number of times “professionals“ laughed at my request was discouraging. Many reacted in a very negative way and I became a problem to them, not a support that needed support. No matter how hard it was, I would drop the request for help and resume leading the care for a loved one, and it was always what everyone else needed and wanted. Lots of great outcomes, but inside I kept taking the hits and absorbing them in unhealthy ways.

When I was younger and my friends and family needed care, I could just brute force it. Now, the brute is running out of steam.

I know my body isn’t going to give me that many more chances to crash hard. Maybe I’m just too close to the problem. When you are used to being the rock and so many depend on you, how do you find softness? I can’t do much to help my wife if I’m gone, so I have to REALLY pause and reflect on the old habits that aren’t helping me to stick around.

So, to improve my odds of staying alive to look after her, I’d love to know if someone has advice about surviving caregiving when you’re into it for the long haul and the shock absorbers are worn out. Peace all.

4 Replies
Brighty
6210 Posts
Plez‍ you've taken the first step here by admitting you need help and you are getting burnt out. Caregiver burn out is a real thing. And it's perfectly ok not to be strong at all times. You are human. I have never heard of anyone laughing at a request for help. That's not right. But yes,the best way of coping..and the way to get self care and time for yourself is to ask for help. Sometimes not just ask, but demand. Think of anyone in your life that you can reach out to,whether it's a family member, friend or a neighbour. Be honest with them about your situation and don't even try to be a hero. You need help. Period. Then be specific about exactly what you need . If you need someone to drop off meals,ask. If you need grocery runs ,ask. A cleaning service. ...someone to just talk to,about anything but cancer. You need breaks and some fun for yourself. Zoom meetings with friends, walks,exercise videos, a friend to go for a walk with. Someone to check in on your wife while you get out a bit....don't hesitate to ask. Your health is at risk too here. It's not selfish to want time for yourself or a break. Its necessary. You may also want to get in touch with pallative care team at tbe hospital. They can help with things like pain management, or if you might need home care or a nurse to come in to check on your wife. You are a gem of a guy. Your devotion to your wife knows no bounds,but it's time to look after you too. Glad you reached out.
SandiG
21 Posts
Plez
The physical part of caregiving can be grueling , yes . My hardest part thou is the mental and emotional. Its the mood swings ( me and him ) its the personality changes , the anger and then doing all again the next day . We seem to do the same dance and then say we will do better the next day . He ( hubby) cant help it , BUT I can , Not sure how yet. Social work is helping but its all pretty new . The burnout part that is . The journey has been a year and when he was in hospital and i went home at night , was a breeze. Got alone time and personal space , even a tub to relax. Coming home and 24 /7 you dont turn off !. Yes, when he naps i could too but then the catch up needs to happen , the cleaning , preparing etc . At night , overnight, its up and down a few times to pee ( me and him ) and never in sync . So, sleep deprivation an issue /

good luck to us all , we are all just telling ourselves we are doing a good job and we are , but the care for us is hard
Trillium
791 Posts
I agree with Brighty‍ “you need help - period” and also sometimes we do have to really push to get help. For me I know when its too much and I have to either change what I’m doing or keep knocking on doors until someone opens it - when I start to feel resentful.

We would never expect a paid caregiver to work 24-7 without a break. When working as a caregiver we were not allowed to work more than 6 days in a row without a 1 day break. That was doing single 8 hr shifts. If we worked a double shift we had to have 2 days before working another shift.

Taking time out for us to rest is essential. My mother when caring for my dad with limited mobility and some cognitive deficits refused to let someone come into her house to help with my dad. She could no longer keep up with the bathing etc. As hard as it was I could do nothing about her decision. It is hard to have someone in your home that you don’t know and I get that. I then had to let it go because I lived at a distance and it was her decision. The best I could do was to constantly suggest that it would be better if she did have help and to let her talk about how hard this was for her.

So talking to us about this here is a good thing to do too. Below is a list of signs that you are experiencing caregiver burnout and link to the Ontario Caregiver Organization where the list is from. Call the Canadian cancer society https://www.cancer.ca/en/about-us/contact-us/?region=on
and this OCO below and if you don't or do get help from them please let us know.

SIGNS YOU MAY BE EXPERIENCING CAREGIVER BURNOUT
If you are experiencing any of the following, you may be showing signs of caregiver burn-out. Please speak to a member of your healthcare team.

• Lack of energy and exhaustion
• Feelings of tremendous guilt
• Frequently sick, feeling unwell, anxious
• Neglect own needs because life is dominated by caregiving
• Difficulty relaxing even when help is available
• Impatience, irritability
• Feeling overwhelmed or helpless, and possibly hopeless
• Changes in sleeping or eating patterns and/or the excessive
use of alcohol, cannabis, and/or prescription medications
• Unable or unwilling to ask for help

https://ontariocaregiver.ca/wp-content/uploads/2021/02/Time-to-Talk-brochure-NEW-OCO-5.5x8.5-Jan28.pdf

Warm hugs
Trillium
CentralAB
977 Posts
Hello Plez‍ Thank you for entrusting this personal account of your challenges re caregiver burnout. There is no easy answer, and sometimes, no reliable/consistent help and support. But that being said, there are ways to get some much needed respite. You sound very knowledgable re how to do the caregiving part and your wife is very fortunate to have you at her side through this. But as you mentioned, sooner or later, the caregiver starts needing care. I looked after my wife who had cancer, for over 5 years. I recognize many of the symptoms you have described for yourself. The worst one for me was that she was blind the last year or so and I was unable to leave the apartment for really long periods of time. Covid mentalities did not help; made it even worse.

I found non-family members to be more helpful than friends or family. But I did find some ways to get a little respite. One, I managed to find someone who would come into the home for 3 or 4 hour periods, during which I would go out with my camera to the nearest bush. Sometimes, I was so burned out, I would say "Im going out to my work shop to make something." But I was so tired that I would just go in there and sleep, with no one being the wiser. There is nothing wrong with having a caregiver or volunteer give you a few hours so that you can just go in your room, close the door, and have a much needed rest. I did this as needed during our last year together.

Respite for caregivers is a little bit like buying a computer. One has to first decide exactly what they want to do with that computer, and only then, can they choose the kind of computer they need. Like-wise, the caregiver has to make a list, in priority sequence, of what exactly they want to do but cannot now do it. Once that is done, then the caregiver can start to hunt down the specific help they need. For example, if going out for a walk or a movie would help you unwind, or going to the gym, anything you enjoy doing, decide when and where you could do these things and then start looking for the specific help you need. There are volunteers that will come into the home just to sit and visit with your wife, and that would give you up to 3 hours of respite so that you can get out and about a little bit.

In the end, my wife died in my arms. She wanted to die at home, and that is the gift I gave her. And there are NO regrets. It was very touching how it all happened. But i think that it would have been impossible for me to look after her those last few months, if I did not get the little bit of help I did find. Those years of being on duty 24/7 took a serious toll on my health. I am still recovering from all that. But now, of course, I can look back with great satisfaction because her final wishes were accomplished, and I can climb mountains and photograph Grizzlies in their natural habitats!

Another thing that really helped me was to plan ahead. Now I know that sounds a bit out in left field to some. But what I did was to start developing a short list of things I wanted to do after she was gone. And that included things such as dating again, my photography, etc. I didnt discuss the dating with my wife, as that would not have been helpful for her; I basically just gave myself permission to do that "when I was ready," But we talked extensively about all the other things I had on my short list. The thing she smiled about the most was what I said about wanting to move to a more remote area where I would have easier access to wilderness areas so that I could "make the world a little better with my photography." It made her happy to know that I was going to take care of myself, and do good things with my life after she was gone.

I found, in my own experience, that having tangible, hopes and dreams empowered me to reach towards a more positive future, and that is the kind of thing that seemed to renew my strength very well at times.

I hope something I or others have said above will be helpful to you. Please come back anytime to brainstorm ideas, or just to vent a bit. Thats something i also found really helpful too. I have found a few things on this web site that you may find to be of interest:

1/ Support For Spouses/Partners

2/ In Home Care Volunteers

3/ A Difficult Journey Without Someone To Listen
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