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Caregiving as an Invisible Health Condition

This week is National Invisible Illness Awareness Week, organized by Lisa Copen, founder of Rest Ministries.  ** There is a great article on CNN about Talking with Someone Who is Chronically Ill that is worth the read as well.

For me, I have two major invisible illnesses: diabetes and depression.  And then I have two, well one-and-a-half, conditions that I consider minor:  Hypertension and essential tremors (it only counts as half because is usually not noticeable, but it sometimes is), which are annoying as hell at times.  Oh, and Raynaud’s and a little osteoarthritis starting in my hands (also annoying as hell at times).

As I was thinking about this, it occurred to me that there was something else going on that is a major player in my overall “wellness” picture.

Caregiving.

At the moment, I am a live-in caretaker for my mother.  During the day I work to support my insulin habit and then I’m there evenings and overnight in case she needs help.  I physically moved into her basement about 18 months ago (yea, I’m the 50 year old guy living in his mom’s basement) and this situation actually is a major factor in why caregiving can  be so stressful at times.

Overall, mom is doing very well.  She’s mostly self-sufficient and able to care for herself which is a much different picture that when I first moved in out there.  At that time, all of us siblings were having serious end-of-life discussions and had started talking to hospice agencies.  But, she’s a tough lady and today is her 89th birthday!

My other siblings come and stay when they can, which gives me a bit of a break. My brother lives about 30 minutes away and he and/or his wife stop by almost everyday and are usually able to handle getting her to and from any appointments.  But I can’t truly “get away” because all my stuff is in my mom’s basement. Did I mention I’m the 50 year old guy living in his mom’s basement?

It’s a very stressful situation, even though I really don’t “do” much for her.  I’m kind of a slave driver, she does as much for herself as possible to keep her engaged in living, she reads a lot, make quilts, cooks…

My heart truly goes out to those of you out there who are caring for loved ones under much direr circumstances

Some nights she will have nightmares, some times several, that I try and wake her gently from, I don’t think she remembers but a handful of these.  We have a monitor in her room and a couple of receivers downstairs, so I’m always keeping “an ear” on her when I am home. Being a light sleeper, I can tell you that she gets up at least twice a night to use the restroom…

Most mornings I wake up a little tired and I try to cram extra sleep in on weekends.  Some days though, I feel almost non-functional when I crawl out of bed and try to make it to work on time.   There have been times when I’ve used FMLA time for myself because, as Morpheus has helped me see, my own self-care is a critical component of mom’s overall care.

The “being always on” is stressful and any long-term stressful condition can bring on burnout and depression.  Since I’m already clinically depressed, it make those episodes deeper.  Both of those things also affect my diabetes control. If I’m really not caring for myself like I should, I don’t feel well physically which only adds to the mess.  And then I get angry with myself for not doing what I need.

If I get to a point where I really can’t care for myself, how will I be able to adequately care for her?  Especially if there should be some drastic change?

I’ve tried to use a coping strategy that I use with my diabetes when I’m feeling burned-out.  Just take care of today, just this one day. Worry about tomorrow when it gets here. It’s just not carrying over very well.  I go to a lot of movies and watch a lot of TV to try to give myself a little break, even if it’s only an hour or two.

It seems to me that, while there may not be a diagnosis code for Caregiver, they are certainly affected both mentally and physically by the challenges presented to them by their caregiving actions for a loved one.  And it certainly isn’t something visible.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

  • http://twitter.com/PrincessLdyBg Cheri Pate

    I think it’s sweet that you live in your Mom’s basement. Not a lot of people would do something like that. I took care of my Grammy for the last 7 months of her life, most of which she was bed ridden. I’m also a light sleeper so any change in her breathing or the slightest shift in bed & I was awake since my bed was right next to her hospital bed that was set up in the living room. I was pretty sure that I had forgotten how to even sleep for more than an hour at a time. It was the absolute hardest thing I have ever done in my life & I wouldn’t trade a second of that time for anything. There were days when I had to take it an hour at a time just to keep from running from the building, screaming. So I know what kind of stress you’re talking about. It’s one of the many reasons why you are my hero.

    If you ever need to vent or just need someone to listen, you know where I am. :)

    • http://strangelydiabetic.com Scott Strange

      Thanks Cheri, like you I wouldn’t trade a moment of it… I’ve gotten to know my mom better in the last few months than I ever did before and I am thankful for that.

      {{HUGS}}

  • http://www.facebook.com/scottkjohnson.diabetes Scott Johnson

    Great post, Scott. Until now, I had never considered this aspect of things, but it definitely makes sense. Even looking at it from the angle of being a caregiver to two healthy kids, there is a pull and demand on my time and energy that affects my overall health.

    • http://strangelydiabetic.com Scott Strange

      Thanks ScottieJ!

  • Sara

    Thank you for sharing this Scott. It is an important lesson to share that you can’t care for someone else if you don’t take care of yourself first.

    • http://strangelydiabetic.com Scott Strange

      Thanks Sara, it’s hard for folks to see that at times, esp the caretakers themselves I think. All the focus tends to be on the patient, and rightly so, but the caretakers much let themselves be their focus from time to time

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