Monday, July 19, 2010

Thoughts on Caregiving

You never know who will be placed in your path.  Such was the case when I took my grandmother to a birthday party for her friend, who was celebrating 101 years!  A nephew, Mich Magness, had come from Oklahoma for the party, and in general conversation, he said he was a gerontologist for the Oklahoma Department of Mental Health.  We began to discuss caregiving and the elderly, and he made some comments and observations about caregiving that I felt were worth sharing here.

  • Most caregivers are women.  Men will tell you they are caregivers, but when pressed and asked specific questions about what services they render, they consider financial duties, such as bill paying, writing checks and balancing the checkbook, and yes - hiring skilled caregivers to qualify them for the title of "caregiver."
  • Many women do not consider themselves a "caregiver" unless they have performed an intimate act, such as bathing the elderly person, feeding them, or helping them to the toilet.  If you are consistently driving someone to appointments and handling errands, going with them to doctor visits, helping with medications, making sure that they have adequate services and arranging for specialized care, and more, then you are very much a "caregiver."
  • Many nurses and teachers fall into roles as caregivers because others consider them "caring people" and readily assume they are the logical choice to provide caregiving.
  • Mich said that the "sandwich" portion of a "Sandwich Generation" looks more like a club sandwich than a conventional one-layered affair, because generally, the person in the middle is more likely to be a grandmother who is caring for her own parents while rearing a grandchild or grandchildren.
  • Sadly, many caregivers are so stressed out that they become ill, have weakened immune systems, and/or die before the person for whom they are caring.  He said it is not uncommon for caregivers to suffer a heart attack, develop cancer, or become ill in some fashion.  He said, "While the caregiver is having a heart attack from the stress of caregiving, the Alzheimer's patient is sitting in the corner, totally oblivous and happy as a clam."  He didn't mean to be flip... he was just offering an observation based on his experience and the statistics.
Mich noted that each state has an Area Agency on Aging... the "Triple A" of senior citizens - not to be confused with the AAA that refers to auto assistance!  The Area Agency on Aging offers not only care for senior adults...but also respite care for the caregivers.  He noted that each state does its own thing with regard to how these services are offered, administered and regulated.  Today, I did some checking and learned that in some instances (if not all of them), these respite services are "private pay."  Frankly, that's why many people are caring for their seniors in the first place... they cannot afford to do otherwise.  So I don't know that this AAA's "respite care" program is a viable option for many.  But it's good to know it exists for those who can afford it and are interested in the assistance.

After a half hour of visiting with this man, he said, "I've just met you, but as an objective observer, it seems to me that you are one of those people who feels responsible for others.  You said you have no children.  I imagine that others feel that this means you are 'free' to help, as in... 'Oh, she has no children, so she has time to help with this.'  I would further suspect that you not only feel compelled to help those in your own family, but you probably take on the needs of others outside your immediate circle."  I told him that my former pastor had told me many years ago that "No!" is a complete sentence, and I cling to that. 

However, in thinking over our conversation, I can see that I need to make some serious adjustments.  For one thing, I need to pace myself more and learn to use that word "No!" - even with myself.  Instead of trying to conquer the world, I need to conserve my energy for my husband and my own household, as well as the care of my grandmother and our nephew, Timothy.  I also realized that I have underestimated my caregiving role. With time and effort, I've pared down the days I actually am in physical contact with my grandmother to one per week.  We do her errands on Fridays - beauty shop, grocery shopping, pharmacy.  Occasionally, there will be a doctor visit on another day - or a party, such as Sunday's.  Often she calls me during the week to discuss something - or I phone her for the same. 

But because I have condensed our errands to one day per week, I had begun to see my "caregiving role" as diminished.  I would think to myself, "I really don't do that much for her."  But in retrospect, I am not considering the weekly attention to her checkbook and bill paying.  I am not thinking about the hours spent choosing a new provider for her Medicare Part D prescription drug coverage.  I have discounted the time I spend filing her health care insurance papers and her statements and bills...and the time I spend on the telephone reminding her for the sixth time that yes, she can afford to have her air conditioner serviced, and explaining to her where my mother and her husband have gone and why they don't answer their phone.

I have not accounted for the time I spend planning my route to encompass all of the errands and making sure I am finished in time to pick her up at the beauty shop when her appointment ends.  I have not factored in the hours I spend arranging for Mam-ma to have a birthday party or figuring out how she is going to get Christmas gift cards for everyone or making arrangements to ensure that I have all of her medical information in my wallet - and those of my mom and my sister.  I didn't include the time I spend updating an emergency phone list, so that I don't forget to call a long lost cousin the next time Mam-ma has to make a trip to the ER.

My point is that "caregiving" - much like parenting - comes with a set of subconscious nuances and stressors and "to-do" lists... and they have a collective effect on the caregiver/parent.  It really explains a lot!  When I'm driving down the street and drive right past a place I had planned to stop and Mam-ma says to me, "I thought you were going to stop there," I wonder... "What is wrong with me?!"  Now I know!  Well, okay... I partly know!  But I think we "caregivers" are too hard on ourselves, sometimes... and frankly, I'm going to try to change a few things.

I'm going to be a little easier on myself, and not expect to accomplish as much in a single day.  I'm going to realize that I'm doing the best I can to keep all the balls in the air, and some days, a frozen pizza for dinner is just fine.  I learned last week that Timothy will survive if I don't vacuum the floor right before he arrives... and sitting on the couch reading Ten Little Ladybugs for the umpteenth time is far more important than making a daily post on this blog!  And napping is highly under-rated!

So to all of you caregivers, I say, "Give yourself a break... and a pat on the back.  You're doing more than you realize... and it's probably taking a toll.  Take a deep breath, spend a half hour enjoying a good cup of coffee or a glass of wine, and simply 'let it be.'  Be kind to yourself and don't apologize for time and activities spent just on you!"  After all... if you wear down and become the "caregiving statistic" who becomes incapacitated, what happens to your charges then?  I consider yesterday my "wake-up call" -- is this yours?


Brooks Kenny said...

A wonderful article! So often, friends of family caregivers want to help - and, the family caregiver is so overwhelmed that managing multiple offers of help can become a significant part-time job.

I thought your readers who are building their circle of helpers may want to add Lotsa Helping Hands to their toolkit. Family caregivers can get respite and relief from tapping into the many offers of help they receive from their circle of friends and family by creating a free, private community. The service includes an intuitive group calendar for scheduling meals, rides and other daily activities as well as community sections (well wishes, blogs, photos) that provide emotional support to the family.

I look forward to your future blogs. Thanks for what you do!

Debbie Robus said...

Thank you, Brooks... I'm adding a link on my blog to Lotsa Helping Hands... for those who are computer savvy, this might be a wonderful resource.

mary rettig said...

I find myself Reading more and more on care giving as my mother ages. She is 82. I am also research for my new business of cargiver coach.

Like is said it takes community to raise a child it also Taking a community to care for a love one.

Self care and respite is needed for the caregiver.

Debbie Robus said...

This comment was posted on my Facebook account by Teresa Sturch Williams... she gave me permission to add it here... "I'm glad you posted this article. I put my life "on hold" seven years ago when my grandfather was diagnosed with Stage 4 adenocarcinoma of the lungs. I cared for him during his last few months. The day he passed away, I moved into his bedroom and began the role of primary caregiver for my grandmother. For the 10 months my grandmother lived after Pa passed away, my dad came every Friday at 5:00 and stayed until Sunday at 5:00, assuming the weekend caregiver role for his mother. That was my only respite.

I would not change those 10 months for ANYTHING in this world. In our case, we did try to bring someone else in to help, and Ma ran the lady off. With elders who have diminishing mental capacities, it is a bit tougher to bring others in for respite.

I'd also like to say the final days for both my grandparents turned out to be significant spiritual events in my life that I will never forget."