This Caregiver’s Game

Saturday January 28, 2012

There’s a children’s game I used to play called Mancala. The long wooden board had six scooped-out cups on each player’s side and larger “home” pits on each end. It is based on a primitive game, variations played throughout the ages by children everywhere, in which the players fill and count their beans, stones or seeds into each cup. In the beginning you have one bean in the first cup, two in the second cup and so forth.  This simple game prepares you to think ahead (where will my last bean land?) and strategize (what can I place beans in the opponent’s way to mess up their count) and learn to count, add and subtract.

I have crept into a full time role as caregiver now. I have my little box of boxes, labeled morn, noon, eve, and bed. I count out Dave’s many pills and plop them into each cup sequentially like the mancala game. When my cell phone alarm rings out at 7:00 am, 3:30 pm and 11:30 pm I sit next to his side (after sitting him up) and we dump the pills into his hand for ingestion. We have prepared ahead because keeping up with what and when is less reliable now for us both.

In the last few weeks, and particularly in the most recent two, Dave’s physical need changes are remarkable. His body is stiffer, his reach less far. His strength is limited although better than he gives himself credit. The aluminum walker is a given, clip-clopping along the bathroom tile announcing his entry. His self care has become assisted care. In medical terms, he is a “fall risk” since he lost balance in the shower yesterday and nearly fell, even while sitting. From a time just a month ago when I continued working from my office (which shares a wall with the master shower so I hear the water running), to sitting in the bedroom, to standing in the bathroom, now I am at the shower with the door open making sure he is safe and clean.

Last week we “ordered” a bath aid to help. She called on Monday. No, I just ran him through the shower on Sunday. We’re good. I told Dave it felt like I was relinquishing my care to someone else and I wasn’t so sure I liked that, or wanted to. He said it felt like surrender. Surrender to illness. One more loss.

She called again on Thursday, as scheduled. Maybe, later, I said. This morning was unpredictable, please call again. She did. I declined. I’ve already helped him through the shower today. I know I feel like I provide the best care. He wouldn’t want someone else washing his skinny frail body, I think. Some things just can’t be scheduled. When do you want her to come over, I ask Dave. I don’t know, he answers predictably. No decision is often his favorite decision these days. On Friday, during the nurse’s visit, she’d changed the bath aide order to once a week. No, discontinue it. We won’t be ready next week I can tell. Maybe never. And, I’m OK with that.

There are dirty little secrets all primary caregivers deal with. Bathing, toileting, pills, dressing and feeding. The basic needs come and go or come and get progressively more dependent on the caregiver in varying degrees based on the illness. There may be catheters, oxygen, wound care, prosthetics and who knows what else. I suppose we all have our own tolerances of what we will, can, want and are capable to do, be it our loved one or not. I am thankful that I have just enough an introduction to medicine and caregiving experience to put all this in a clinical perspective. Without it I’m not sure what care tasks I could handle. I separate the wife from the caregiver in my daily activities with him. Without my little healthcare background, I wonder, could I take care of him as I do now? Perhaps being a mother is enough preparation for most women to transfer into the caregiver’s role. (Not necessarily to preclude men, but women are the primary caregivers numerically speaking.)

So far I have been able to protect his kids and Dave from having to step over those most intimate boundaries. I’m not sure if right or wrong but there have not been any complaints that I know of! Surely bath aids and other supporting hospice folks make a big difference in caregiving support levels for families. Yet, for me, at times, I feel all the “care” intrudes.

As a hospice respite volunteer I’ve made many calls when the caregiver just couldn’t decide when and if I should provide the requested time off. The exception was when this person had an obligation to their own doctor’s or other appointment. So, I’d call back a day or two later as suggested, usually with better results. I also had a patient that when I arrived the caregiver would still be trying to get ready, often in her robe. With each subsequent week she was less prepared when I arrived. Oh, I can see it all clearly now! I, too, find myself just unprepared even when I dictate the date and need. I’ve set and changed many appointments. I’ve cut short my outings and to-do list. I have a very short list of what is critical to me. Massage is one. Perhaps the only one! The other critical need is  Dave’s needs – Ensure, the tolerated food of the month and some personal care items. Everything else can usually wait.

I could have food delivered. I can put off most doctor appointments. (I stopped the PT appointments for my hip. Not only was I not getting enough progress before the next appointment, but I couldn’t sort through getting someone here.) I do change my mind about what is important or priority. I take a nap and then I’m better.

I am living in a gray area. I want company. I want to be alone. I want supporting care. I want to do it all myself. I want to get out and about. I want to stay home.  I want to get my own groceries. I want to have it delivered.  I want to get dressed. I want to lounge in my robe.

I never know which want will surface. It may change in a matter of minutes. I can have coverage for someone to stay with Dave only to find that I don’t want to go and/or often don’t have the energy to head out somewhere. I can get out in the world and wonder what I am doing in it. (My SCDS balance and hearing issue contribute to this angst as store fluorescent lights and overstimulating environments can have quite an affect on my being.) Someone comes by to visit and I suddenly have an urge to run an errand. Or then maybe not.

I don’t think straight all the time. I have to aim my focus at times to what is important. I don’t want to train others (as in, would the bath aid know to bring in the heater during shower so Dave doesn’t get cold?) I hate making a specific list for stuff I just know (as in, oleo means Gold-n-Soft tub margarine and cereal is that one granola I like without the raisins). I’ve been at the store for others. It is stressful for each participant. Sometimes it is easier to do it myself, even if it is not seemingly the best solution, or even if I feel like I can give up the task. I did not realize how stuck in my ways I’ve become accustomed to! I didn’t know how much work it is to replace me! Dave himself is so sure of my touch and care unfamiliar can be difficult for him, as well.

This is just no fun right now. Humor has waned. The seriousness of comfort and care has taken over our game of life. We are both tired, but must play one more time. Our lives go around in circles, like on the mancala board. We fill one hole, another empties. We take turns and the cups fill again. Maybe less, maybe more this time around. Whose turn is it? What day are we on? Mon. Tues. Wed. Morn. Noon. Eve. Bed. Count the beans. Count the pills. Keep going until all the beans arrive in one single home and the other cups are empty.

Game over. OK. Let’s play again.

 

9 replies
    • joan
      joan says:

      Hi Allen. I can’t imagine that I am any stronger the the thousands of other men and women who care for their loved ones day in and day out, doing whatever necessary. The more I read and learn about all of the family caregivers in similar circumstances, the more I admire the teams of people serving hospice and elder care. It is nice to know I am not alone.

      Reply
  1. Juliet Bruce
    Juliet Bruce says:

    Joan, I’m one of your LinkedIn connections and clicked on your link a few minutes ago, which brought me to your sad and beautiful post. I just want to say that my heart goes out to you and your beloved husband. Words fail at this point, but not my deepest respect, compassion, and awe at the grace of your love. Warmest wishes, Juliet Bruce

    Reply
    • joan
      joan says:

      Thank you so much Juliet for reading the blog and taking the time to offer your kind words. I know you understand the power of sharing our stories through the work you do as well, for not only the author’s own insight and growth but also for anyone who stumbles into our world of writing. Write on, I say!

      Reply
  2. Connie Fenner
    Connie Fenner says:

    I came to your blog from the article in the Olympian about your husband’s death. Tears are forming as I write this and I don’t know you, but I know your situation.
    I truly thank you for being able and willing to express and share your thoughts as you go through the ordeal of helping your husband both live and die.
    I am in a similar situation as my husband, best friend, lover is suffering from a slowly progressing degenerative nerve disease.
    So many of your observations and thoughts have helped me know I’m not alone in my emotions.
    Thank you.

    Reply
    • joan
      joan says:

      Hi Connie. I find as I share my story that we are always more alike than different. Best wishes and peace along your way. Please stay in touch. ~Joan

      Reply
      • Connie Fenner
        Connie Fenner says:

        Thank you so much. I’m trying to see death as a culmination of life rather than a termination. I wish you strength and comfort.

        Reply

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