Yesterday was Father’s Day here in the United States. It was a day to celebrate all of the fathers and father figures in our lives. For many of us, that meant lifting up both our own fathers and the spouses that now play that role for our children.
My own father is married to a woman who is chronically ill. He has two children, both daughters, and both of us have chronic illnesses as well. As such, he truly understands what it is to be placed into the role of caregiver for people suffering from these issues.
Caregivers for the chronically ill and disabled are often overlooked. You probably already know that if you are reading this blog.
People are quick to praise those of us who are suffering from chronic illness as brave and heroic and to tell disabled people how strong and inspirational they are. They are much slower, though, to reward caregivers with praise and recognition. It is just one of the many reasons that being one of these long-term caregivers can be physically and emotionally exhausting, frustrating, and isolating.
This week, I spoke to my father about some of these issues. I wanted to get his opinion – his perspective – on how being surrounded by people with chronic illness changes life. I also wanted to hear how he felt about the situation he was in, and give him the opportunity to be open and honest.
I have to admit, some of his responses surprised me.
Mostly, though, they reminded me that I am one of the luckiest people alive, to have a father – and now a husband – who is so deeply understanding, compassionate, and concerned about the wellbeing of his spouse, his children, and his family.
Read our short exchange below:
Me: As far as I know, Mom was not chronically ill when you two met and married. Is that the case? If so, when did she – and you – realize she was chronically ill?
Dad: She was not ill whatsoever when we met and married. It became obvious to me that when her health went crazy a couple of years before she left state employment – around 2008, I think – that it was downhill from there. It has not changed the way I feel about her, though. We promised to stick it out all the way through, and I intend to do that.
Me: I started having chronic illness issues when I was about fifteen. What was it like raising a “sick kid”?
Dad: I didn’t feel that your health issues were that overwhelming. For me, at least. They definitely worsened as you got older.
Me: Both of your daughters and your wife are chronically ill or disabled. Does it feel like more is on your shoulders because of that?
Dad: Sometimes I wish I could turn time back to when everyone’s health was more manageable, but I don’t view it as a burden or anything. Life is what it is, and you can either stand up and face it head on, or wilt and let it crush you. I choose the former.
Me: You are a very strong person who supports those around him very well. Do you ever take time for yourself?
Dad: Sure, I take tiny bits of time when I can find it to just do mindless stuff, like surf the internet or something. It’s important to take time to relax and recharge.
Me: How did marrying and raising chronically ill or disabled people impact your ideas of health, wellness, capability, and work?
Dad: Not sure that I ever compartmentalized any of my family’s health issues from a standpoint of what effect it would or should have on me and my own thought processes. I’ve always been the type of person to just deal with whatever as I face it, and do the best with what I have. I understand that health and wellness is part luck and part genetics, so their health has never had a real impact on how I think of them or my relationships with them.
Capability can be as much about one’s mental state as it is physical ability and limitations, but obviously there can be roadblocks. Work is what it is, for me – a means to an end. While it is possible to thoroughly enjoy what it is that you do for a living, it does not replace the joy of a partner and of family, the joy of seeing and doing things that are solely for the purpose of enjoyment, be it meaningful or mindless. That joy has always been more important to me than my ability or availability to work. I think having your priorities in order that way make maintaining perspective – and your sanity – much easier.
Me: What would you tell other men whose wives or partners have chronic illness?
Dad: Don’t lose sight of what brought you together in the first place. It’s still the same person, but now they need you more than ever.
Me: What about other men whose teenagers or young adult children become disabled?
Dad: Don’t forget that you helped make these people – they are your flesh and blood. And don’t lose sight of the fact that we all reach that point where we aren’t able to do what we once did, that we must lean on others to make it through our days. For some people that is when they are old, for others it comes much sooner. What matters is being there for your family regardless of when that time comes.
Me: Any parting thoughts?
Dad: A man should never forget that it his privilege and responsibility to love and care for his partner and children, no matter what life deals to you. Play the hand you are dealt, and find joy in doing it.
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My final thought: My father and people like him in a fatherly role caring for a spouse, child, or other loved one with a disability or chronic illness are amazing – and woefully underappreciated. I love him and cherish everything he has done for me, my mother, sister, and family.
Love you, Dad!
Note: Thank you to my father Lee for his contribution and for being an amazing father. I love you, Dad!