Caregiving is an incredibly broad topic and the practice of caregiving comes in all different shapes and sizes.
The main reason for this is that caregiving is completely tied into the relationship between the caregiver and the person receiving care.
Because of that, one person’s experiences in caregiving end up being quite different than the experiences of someone else.
Individual family members differ considerably from one another, as do individual caregivers.
This means that the caregiver-person relationship is different in every single case.
In turn, every relationship will come with its own set of challenges.
This can make it so much harder to figure out how to approach caregiving and the specific issues you face. After all, the solutions that work for one person and one situation often will not work for another.
The posts on this blog attempt to provide information that can guide caregiving decisions and help people to figure out what to do next.
In this post, I’m going to share a perspective written by a family friend. In this piece, my friend talks about some of the challenges she faced as a caregiver for her husband and some of the ways she tried to cope with them.
I find her story and situation an important reminder that caregiving doesn’t always look like we would expect it to and that it can often bring unexpected challenges.
I also feel that we really can learn from other people’s experience in caregiving and use those lessons to help us.
Some Background to My Story
My name is Alice, and in many ways, I have had a strange life.
I married at 24 to a man who faced some physical and some mental challenges. Specifically, he was bipolar and overweight.
Already, you can see that my experiences in caregiving were different than what many other people go through.
At the time, neither of those issues was particularly significant and for the most part, he was able to live life the same as everyone else.
I know that we both believed that his health would improve, but we were probably a bit unrealistic in what we hoped and what we expected.
Regardless, within a few years, his health had deteriorated. Physically he was not able to move far and within another year, he could not leave the house. He was also incapable of doing just about anything around the house, including cooking or cleaning. As time progressed, it got to the point where he was unable to do something as simple as getting something out of the fridge (which was in the next room).
There were other challenges too.
He struggled with sleep, and could sleep no more than five hours at a time.
Most of the time he would sleep between two and three hours, and then had to get up.
When he got up, he would often need help with something, such as getting something to drink or something else.
At the same time, I had to help him with some bathroom issues.
For myself, I worked full-time from home and was responsible for the bulk of the housework.
We lived with his mother, so she helped every so often, but frequently she caused more challenges than anything – as her own physical mobility was also very limited.
The situation meant that I had so much to do and not enough hours in the day or the week to do it all.
To make matters even more challenging, his sleep pattern and needs meant that it was rare for me to get more than five hours of sleep at a time. You can imagine how that started to feel after a while.
Caregiving
To be honest, I never actively viewed myself as a caregiver.
Even though he was so limited physically, I viewed the work as roughly equal, partly because he supported me very well emotionally.
It’s only now, looking back at it, that I see how much I did.
At the time, it felt like nothing was optional.
After all, I couldn’t really drop down how much work I was doing, and everything around the home seemed essential.
I mean, there wasn’t anyone else who could do it.
I felt obligated too.
This was my family, my life.
I was the one responsible for making sure that everything was alright.
But it was draining – physically and emotionally.
I never had enough sleep and I rarely had the time (or energy) to do anything for myself.
So, my days largely considered of work, housework, helping my husband and sleep – over and over again.
We couldn’t be intimate in any form and the challenges of home life meant that I rarely got out and had almost no social life.
But, we survived.
One day to the next, we did get through all the challenges of caregiving and he did help me cope as much as he could.
Self-Care
An important part of caregiving is self-care.
We all have needs and we can’t just overlook them because of our responsibilities.
I found that out for myself.
My family situation meant that I put my own needs last, all of the time.
And the problem was, there wasn’t enough time for everything.
So, if anyone’s wants or needs got sacrificed, it would always be mine.
The first example of that was simply time.
I rarely ever had time to stop and do things that I wanted.
Even when I did, there was a better-than-average chance that I would get interrupted.
For example, I love watching television and movies.
When I got the time, I would set up my laptop so I could lie down and watch a movie or an episode or two from a television series.
I was never able to get through a full movie without an interruption and even getting through a single episode was challenging.
For me, that was probably the hardest thing.
It meant that no matter what I was doing, I had to keep half an ear out for my husband calling for my help.
Even when I was sleeping, it felt like I could never fully relax.
We had some solutions – some things that helped, but it never seemed to be quite enough.
One thing we did was a stress box.
We planned it together and I filled a plastic box with things that helped me feel better.
Chocolate and candy were in there, as was alcohol – although neither of those was particularly good for my physical health.
There were other things too.
Bubble bath, candles, a couple of good books and music.
All things that could help me relax.
And that helped.
We also tried as much as possible to set aside times where I could just rest.
We worked on packed lunches in a cooler bag with ice, so he could eat at night without me having to get up.
Because, no matter how we timed it, he would be awake when I was asleep. That was just one of the downsides of how little he could sleep at a time.
It was never easy and finding ways to care for myself was always a challenge.
It also got harder as time went along, probably because I was already so run down and many of the techniques that we tried just failed to be effective in the long term.
Looking Back
Caring for my husband was the best-of-times and the worst-of-times.
Physically and emotionally, it was harder than anything else I have been through and in some ways I’m still recovering.
But, through all of that, we were happy.
I lost my husband less than six months ago, very suddenly.
We knew he was unhealthy and that this was a reality we would face someday – but we had both thought that it was years away.
I don’t regret caring for him.
Even with all the challenges, it was worth it, especially as we were happy and loved one another.
My biggest regret is that I didn’t take better care of myself in the process.
I ended up run down, out of shape and hadn’t even seen a doctor myself for many years.
There were things that I could have done to care for myself better.
Realistically, we never even looked into the potential for someone to help with what I was doing.
Even paying someone to do the housework would have made my life a little bit easier and it was something we could have afforded.
Yet, for some reason, I felt obligated to do it all myself.
I think every caregiver needs to seriously look at whether they are taking care of themselves.
It’s so easy to focus on the person you are looking after, especially if they do need a lot of attention.
In the short-term, sacrificing your own needs might seem like the best approach – but it never works in the long-term.
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