Sunday, January 15, 2017

What It's Like to Be a Caregiver and the One Being Cared For

If you struggle with a chronic illness, mental or physical, having people in your life who are close to you can be a blessing and a burden.

Sharing your life with someone, even under the best of circumstances can be hard. Add struggles into the mix—whether they be sickness, or finances, or any of life's other challenges—and relationships can be difficult.

Never has this been more true for me than when I've suffered during extended periods of depression. During these times, dealing with myself seemed almost impossible. Add to that the burden I felt to be a good mother to my daughter and to be any kind of spouse to my husband, and it felt like an insurmountable feat. 

I felt like I was causing them to be unhappy, but there was nothing I could do to fix it. My feelings of guilt made the depression even more oppressive. I am fortunate to have a husband who has always been supportive of me. And even though he never expressed anger towards me, or tried to make me feel bad for the times when I was unable to support him back or even contribute much to the relationship in any way, the feelings of guilt I had were sometimes unbearable.

I’m guessing (although my mom and dad will explore this further in the interview below) that people with physical illnesses or disabilities have similar, if not more extreme, feelings of thinking they're a burden to their loved ones and caregivers.

We wanted to take some time to explore the role of caregivers. So in this blog, as an added bonus, I get to interview my dad who has spent the last 16 years being my mother’s primary source of mental and physical support.

Like me, my mom is extremely lucky to have a spouse who has supported her unconditionally. We know not everyone is as fortunate.

To clear up any potential confusion in the interview, my parents are Toni (that's my mom whom you all know) and Tony (that's my dad). 

Toni about Tony:

Describe how having a chronic illness has changed your marriage.

It's been hard. In some ways, we're closer because of it, but it's been hard anyway. For one thing, we don't go out into the world together and do things. When you don't do things together, not only do you miss the fun of sharing an activity, but you also don't get to share with each other your impressions of the events or of the people you visited with. So, it's harder for us to share our lives because we do so much less together.

In addition, because of that, we've developed, for the first time in our lives—and this is not necessarily a bad thing—different interests because we're not able to do the same things. This means we have to work harder to make sure we don't grow apart. We do that by making an effort to ask each other what we've been up to, by playing some games we like, and watching TV together.  But it's a challenge. I think all partners in this situation have to actively make an effort to keep from growing apart. 

I also think it's important to keep your relationship from being only about the fact that one of you is chronically ill. The fact is, you could spend all day talking about it, but it's a good idea to find things to talk about and to do together that aren't related to being sick.

Has there been any time during your sickness when you wondered if your marriage would survive?

No. And I say that with a lot of gratitude because I know how lucky I am in that regard. It's partly because we had a strong marriage before I got sick, and we'd been together a long time already. But that's us. I hear from people all the time whose spouses or partners have left them.

It's one of the true tragedies of chronic illness—people get abandoned. Especially a parent with children. It happens mostly to women. Their spouses or partners just take off. They don't have the desire or the ability to be a caregiver. Again, this is something I've talked about before—how our culture comes up short in educating people that this may happen. It says in the marriage vows "in sickness and in health," but people don't realize they might actually have to be a long-term caregiver for a spouse who gets ill. 

So, no, I've never wondered if my marriage would survive because I can't imagine a scenario where that would happen. But I am very aware of how fortunate I am, and I count that blessing every day, even if I don't express it to my husband.

Can you give people who are sick any advice on how to cope with feelings of guilt they might have that being sick is a burden to their caregivers?

First of all, I think that feeling is understandable. I've felt guilty at times. I'm doing better now, but I've said to my husband too many times to count, "I've ruined your life," or "I'm so sorry." He always assures me that I haven't ruined his life and that there's no need to apologize, yet I still say these things to him sometimes.

The way I've been mostly able to overcome feelings of guilt is by recognizing this this isn't something I had control over. It's not my fault. People get sick, whether mentally or physically. It's one of the risks of being alive, so feeling guilty about the burden that it might impose on your caregiver serves no useful purpose. 

Actually, in my view, guilt never serves a useful purpose. The reason I say that is that it handcuffs us mentally and that keeps us from problem-solving and moving in a positive direction in our lives. What I mean is that it keeps us from thinking about how we might make things better for ourselves and our caregivers. I know it may be easier said than done, but I suggest that instead of spending your time feeling guilty about being a burden to your caregiver—do something nice for him or her. Think of some little thing you can do to show your appreciation, because guilt doesn't solve anything. And there's no reason for it because this stuff happens in live. It's nobody's fault.

So you instead of feeling guilty about being a burden to your caregiver, you would say it would be more helpful to focus on being grateful for them?

Yes. Think of the ways you're grateful for your caregiver and do something to show him or her that you feel that way. It may only be saying "thank you" or giving a hug. For example, on a day when I'm feeling good enough, I go in the kitchen and do the dishes. My husband does the cooking and the dishes every single day. So rather than feeling guilty that he does this, I try to pitch in when I'm able. It's a small way of thanking him for all that he does for me.

Do you have any advice for people who are chronically ill who have trouble communicating their feelings to their caregivers?

This is something I cover a lot in my books, and I offer several ideas for what to do when you're having trouble communicating. One suggestion is to have a third party present. That person can give you support and might help you express yourself in ways you're not able to.

Here's another suggestion that has helped people a lot. If you're having trouble communicating your feelings to your caregiver—write him or her a letter. I thought of this idea because, many years ago, I had friends who were in couples therapy. They were unable to speak to each other without one or both of them shutting down, so communication was impossible. Their therapist suggested that they write letters to each other. The wife told me that it led to a breakthrough because each of them was finally able to understand how the other one felt.

I know it can work in a caregiver situation because I mentioned this idea of writing a letter in an article that was published online, and I got an email from a reader who said, "This is how I got my mother to understand my chronic illness." Instead of taking care of her daughter, her mother was basically harassing her. The mother was constantly telling her to get up and go out—that kind of thing. So the daughter wrote her mother a letter in which she described what her day-to-day life was like and how hard it was to feel sick all the time. She said it completely turned their relationship around—her mother became her greatest support. 

So it's an interesting idea. I actually wrote a letter myself early on in my illness. The text of it is in my first book, How To Be Sick. I sent it to some of my friends, explaining why I'd suddenly become so undependable—having to cancel visits at the last minute, etc. I'm not sure what effect it had, but I do know that I felt better having written it. Actually, I now remember that two of them said something like: "This was really helpful. I didn't realize what was going on with you." So the idea of a letter—or an email—goes beyond just caregivers as a way to communicate what you're going through.

One more thing on this subject, In my most recent book, I wrote about something called "active listening." It's another way of facilitating communication. The key is to use the word "I" more than the word "you." This is effective, first, because the word "you" can be taken as a criticism and second, because the word "I" simply expresses how you feel and no one can deny how you feel. This is called "sending I messages instead of you messages." So always check your speech and check your writing and try to express things from your point of view. No one likes to be attacked, even gently, so this is a non-confrontational way for you to express how you feel.

[Note from Mara: My mom's latest book, How to Live Well with Chronic Pain and Illness has two chapters devoted to helping caregivers.]

We were fortunate that my dad, Tony, was willing to contribute some thoughts this week about being a caregiver and how my mom's illness has affected him.

Tony about Toni:

As a caregiver, what are the biggest challenges you've faced?

The appearance of chronic illness in life may not be a welcome change, but we didn't have much to do with our appearance in life in the first place, so the biggest challenge is learning how to deal with what we didn't plan for and don't want, without making things worse for everyone involved. You can't expect to make things better if you can't keep from making them worse in the first place, so acting out of disappointment, frustration, or anger doesn't improve anyone's life. The biggest challenge is overcoming our wish to hold onto the way we'd rather things be.

Do you ever feel angry at Toni for being sick? Do you ever feel frustrated about it? And if you feel either one of those, how do you work through those feelings?

I don't feel angry about it, but I do feel sad. I can see how hard it is for her to be unable to do things even as simple as going out to dinner or joining others in socializing in the house. It's pretty unrealistic for me to be angry because she can't regain her health—she certainly would if she could. Perhaps realizing that life comes with a raft of stuff you don't want no matter who you are is working through it? 

If you met someone who just discovered they were going to be the primary caregiver for someone with a chronic illness, what are a couple of pieces of advice you'd give them to ease their transition into the caregiver role?

Any specific advice I might offer would depend so much on the particular disability. A caregiver who needs to deal with someone losing mental capability as with Alzheimer's is very different from having to deal with the problems associated with a condition like Toni's where she is still fully present mentally but pretty much stuck in the house feeling lousy. 

Overall, I'd remind someone just beginning life with chronic illness—either as patient or caregiver—that life doesn't unfold according to any model we have of how it should be, and that expecting (much less requiring) things to be a particular way is only setting ourselves up for the added frustration and anger that come from not getting what we want. If we don't roll with the punches life throws at us, they'll knock us right down and leave us there. So I guess my advice would be to do the best you can and learn along the way.

Toni and her husband (and caregiver) Tony on their wedding day.

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