Thursday, July 15, 2010




Caregiving

Every single day there’s a surprise waiting if you just look for it (and even if you don’t). Just about the time I’m ready to fall over and say I can’t do another thing today, Mom will come up with something that makes me smile – and sometimes, just laugh out loud.

Yesterday when I was pulling up her britches after she went potty, she said, “Boy, I hate these air-conditioned potties! They freeze my butt! Why do these people keep the potty so cold?”

Now, if you knew my mother, you’d know she wouldn’t say “butt” if you paid her; however, over the last few years, we’ve entered a territory, thus far unexplored, where nothing of the familiar resides. The mother I knew and loved is no longer the woman I’m caring for. She’s still my mother, make no mistake, and I still love her, make no mistake about that either, but she’s a different person than the one I knew growing up – a different person than the one I knew when Boots was a child – a different person than the one who helped care for Auntie Grace – and a different person than the one I knew last night. Each day is a surprise.

When I get home today, I have no idea whether she’ll know where she is (probably not), what time of day it is, whether she’s eaten or not (even if she has a cookie in her hand and she’s sitting at the dining room table), or what season of the year it is (we already know she doesn’t know what year it is – she thinks it’s 2002 for some reason, and that’s usually the year she’ll give you if you ask her what year it is) – as I said, each day is always a surprise waiting to happen.

Now, I’ve always liked surprises. I’ve always thought of them as something special, happy, exciting, something you look forward to – I’ve always liked them…always…right up to the moment I realized I was losing my mother.

When is it you realize that your parent is no longer the adult, no longer the person you can go to for help, no longer the person who knows everything, no longer the person you can run home to if the world kicks you in the teeth, no longer the person who’s going to hold you and tell you everything will be better in the morning, no longer the one who knows how to make gravy or how to get a stain out of a blouse or whether Uncle Axel was Mam’s brother or what year dad’s family came out to Portland from Minnesota and how the kids were split up and had to come out in batches – traveling until they ran out of money, then working wherever they were until they could get enough money to continue to Portland… what happens then?

It takes a long time for this to happen. People change slowly… slowly… slowly, and then one day the realization comes like a sledgehammer coming out of nowhere hitting you in the head: MY PARENT IS NOW MY CHILD.

You don’t know exactly when it happened. You don’t know exactly how it happened. You don’t know exactly why it happened. You just know in the deepest part of your mind and soul that IT DID HAPPEN, and nothing will ever be the same again.

You suddenly realize that YOU are the adult and your parent is the child. YOU are the person your parent goes to for help. YOU are the person who holds them and tells them everything will be better in the morning. YOU are the person who’s supposed to know everything. YOU are the person your parent runs to if the world kicks them in the teeth or they’re frightened. YOU are the one who’s supposed to know how to make gravy and get the stain out of blouses. YOU are the one who’s supposed to remember the family history and all the stories (like Auntie Grace shooting jackrabbits off the back of a buckboard or mom having a rollover in her car and getting people from the neighboring farm to come out to help her roll it back up again as she drives away not thinking much about it), YOU are the one writing all the checks, and arranging all their healthcare and dealing with all financial and medical matters that concern them. And YOU are the one who is responsible for protecting and caring for your parent (who is now your child).

The life cycle must be “Child, Parent, Grandparent, Child.”

Who’da thunk?

Somewhere along the way I missed the last cycle of life. I knew that Mam (my mother’s mother) lived with Auntie Hazel and Uncle Red Red until she died; and I knew that Ma (my dad’s mother) lived in her own home with Aunt Mert and Uncle Ike living upstairs, and Auntie Grace living with Ma in her second bedroom until Ma’s death. But I had no idea of the care they needed or the day-to-day activities of caregiving that was provided to them by their children. It never occurred to me that they might need a break or a little help with caregiving.

Mam was different than Ma in that she was scrubbing the front porch on her hands and knees when she was 92, fell off the porch and broke her hip, and became unresponsive a few months later and died at home. I’ll never forget the day she died (May 7, 1975). I was living in Kansas City and hadn’t talked to her since I was last home (at Christmas, I think). I cried all night – sometimes I still do when I think of her. She was one of the most loving people I’ve ever known. She was a hugger and a kisser – a lot like my mom.

Ma on the other hand was very heavy and didn’t do anything but sit in her rocking chair and look out the window. She had a stroke one day (also at 92), and that’s when Auntie Grace came to live with her and cared for her until her death six months later. She was of German stock and didn’t hug much and never kissed anyone. She loved us quietly.

How did I get to be a ripe young age of 62 and not have even one small inkling of the care they needed and were getting from their children, and even more than that, how could I have missed the real lesson I should have seen with my grandmothers, that we end as we begin – as a child, and the only hope we have of ending our lives in comfort is the love that’s given by our families.

After the shock and realization of that lesson dissipated a bit, it left behind that same great sense of awe, love, and responsibility that I had when Bootsie was born. A tiny, perfect little child who relied on me for everything from food, clothing, and housing to love, emotional support and leading her to maturity and adulthood. In other words, she relied on me for her very survival – which is what my parents do now, but instead of leading them to maturity, we are, in effect, leading them to their everlasting home and helping them die surrounded by love. What an honor to be given this opportunity, and what a responsibility too. After living with us for three years, we were able to be with Auntie Grace when she passed away one Saturday late afternoon in June at the age of 97 in her own bed at our home. Mom, dad, Rich and I were all beside her, holding her hands, touching her, and telling her it’s all right to let go and that we loved her. It was an experience I wouldn’t trade for anything; and God willing, this is what I want for mom and dad too. It’s the ultimate gift we can give them. No one should die alone.

It can also be overwhelming and almost too much to bear if I let my thoughts get away from me. The responsibility, day after day after day; rarely getting a break, never able to go out to dinner or a movie without making prior arrangements for “childcare.” Never able to wake up on a Saturday and trot off to the beach on a whim. Never able to go upstairs to take a 2-3-hr nap after getting up at 3:30 am to go to work and being so sleepy my eyes cross. Having to take mom to the bathroom every hour and a half or so – and sometimes forgetting that she’s in there if I don’t set a timer – and dashing back to the bathroom to get her back to the couch. And all the while feeling guilty, so guilty. [How could I have forgotten her? What is wrong with me that I’d leave her in there for 20 minutes without checking on her? I’m a bad daughter for not being more diligent, more aware, more caring.] When I’m at work, I feel guilty that I’m not at home caring for mom and dad. When I’m at home, I feel guilty that I left work with some things undone. Now that I’m working half-time in order to be home with “the kids” more, I feel guilty because I’m not doing my share in bringing in the money we need to meet our obligations. Guilt, guilt, guilt. And occasionally I feel trapped, although fortunately, it’s not a feeling that’s often with me, but it’s certainly one of the threads that’s woven into the tapestry of our lives as we’re living them now.

Yes, all of these things can pile up and weigh heavily over everything I do or think or feel…

But, there’s another side to this.

All my life, through all the good and bad things I’ve done, always, mom and dad have been there. They loved me when they were proud of me, and they loved me when I wasn’t loveable – they always supported me in whatever I did in my life. They rejoiced with me when I was happy, and they ached and hurt for me when I was sad. How do you repay someone for a lifetime of caring, a lifetime of support, a lifetime of continuous giving of everything they had to give? How do you give back some of that same love and support and care?

I guess the answer is that you can’t repay those things. They were freely and happily given and would be given again if they had a choice. Repayment isn’t really an issue. What I can do however, is give back as much of that love, support, and care as I can. At this moment, our roles are reversed. I am the parent. My parents are the children. And I WANT to give them as wonderful a “childhood” as they gave me – as much love – as much support – as much care as I’m able to give. They need me now, as I needed them when I was a child. It’s not a matter of them not WANTING to care for themselves, it’s a matter of them not being ABLE to care for themselves. And as long as I’m ABLE, I will love, support, and care for them as they did for me.

The other day while mom was in the bathroom (we spend a greater portion of our day in the bathroom these days), she looked out the window and remarked on how beautiful it is here. Then she said, “These people have a nice house. We should buy this place.” I told her that it’s our house already, hers and dad’s and Rich’s and mine. She said, “Well, that’s good, because I told Earl he should buy this place a long time ago.”

Often I don’t know if she still knows who I am. She knows my name, but I think she gets confused and forgets I’m her daughter. Uncle Bill says the same. He doesn’t think she knows who he is; he thinks she accepts his hugs because she’s a loving person, not because she knows he’s her son.

It’s so sad. So much of this is sad.

But I’m so very fortunate in this adventure to have the most loving man by my side. When Rich and I were married, 12 years ago, mom and dad had been living with Boots and me for three years already, so when we married, he moved into a home that included two people in addition to his new wife. What a way to start a marriage! And how very, very blessed I am to have married a man who would not only accept my parents as part of our lives, but openly embrace and love them, welcoming them and asking them to stay in our home always. I don’t know that I could do the caregiving I’m doing now if I didn’t have a husband who is so filled with love that it overflows and covers my parents as much as it covers me. We share equally in the caregiving, each of us giving in the ways we each do best; each of us supporting the other – partners in “parenting,” enriching our lives together and also helping each other through the various fears, responsibilities, stress (yes, there’s that too!), heartaches and rewards of caregiving. And Uncle Bill and Robbyn are always there if we need to take a few days to go away. Uncle Bill takes dad out for dinner almost every Wednesday night, and that’s such a big treat for dad. It’s the only time he gets out of the house. I’m sure lots of caregivers have no relief from anyone, so having Uncle Bill and Robbyn available has made a monumental difference in our lives. Sometimes you just need to get away.

The other day, mom said, “Do we have any fingernail polish remover?” And I told her I think we do. She said, “That’s good, because I didn’t think I’d be spending a week here. I thought I was just coming to visit for a few hours or I would have brought my own.” I just smiled and nodded to show I understood.

These statements come out of the blue with no warning. Sometimes we laugh, and sometimes we cry – but fortunately, there is more laughing than crying. It’s just when she thinks someone is still alive that it hurts; we’re able to laugh most of the time with the “Alice in Wonderland” statements that come out of her mouth. She seems almost normal, like she always was, then she’ll say something that comes out of nowhere and surprises us. Often she’ll say, “Those people should be home pretty soon.” And when I ask which people she’s talking about, she looks very confused and doesn’t know who she’s talking about. I don’t ask who she’s talking about anymore; now I say, “You’re probably right. They should be home pretty soon.” And she continues on her way happy.

A few weeks ago, as I walked into the dining room, I saw mom wrapping up all the cookies that were left on the plate after lunch, and when I asked her what she was doing, she said she’s saving them for the two little boys that were just here. We think she’s talking about Alex and Asher, but we’re not sure. She may be seeing two other little boys running around the house because sometimes she does see people – at least we think she does. I told her that Alex and Asher weren’t here right now, but she could give them cookies when they do come back home, but it would be a while before they’d be back. So she put the cookies back on the plate and looked disappointed. She loves the little ones.

And there’s no getting around it, caregiving is hard. It doesn’t get any easier as time passes, it gets more difficult. Sometimes I think I can’t do it anymore; it’s overwhelming, it hurts so badly to see the people you love, slowly but continuously going downhill – getting more forgetful, their bodies getting weaker, their step slower, shuffling, and more labored, their minds getting more confused, seeing the confusion in their eyes and the expectation that Rich or I can fix whatever is wrong, the hurt in their eyes when they sometimes realize we can’t help them, and the fear of the unknown – whether one of them will die and leave the other one alone – whether they’ll be able to stay where they are or have to move to a care facility if we can’t take care of them – to know all of their friends and most of the family in their generation have died . . . it just goes on and on. And one of the toughest things about caregiving is that it happens every single day, every single night, every single week, and on and on. It’s not a superhero swooping in to save the day for one big gigantic event – that would be easy and filled with glory; no, it’s not that. It’s a daily routine where there are no heroes, no big wins, no saving of lives, no pats on the back, no one to know what you’ve done or how hard it is to do – you just keep at it every single day; and it takes the patience and endurance of a saint to continue to do this with very little help. Oh, for the days of big families, where you would have six or eight or ten kids in the family who would all do their share and who lived just a couple of blocks away. But that’s not our world now. Everyone is scattered all over the planet, and everyone is frantically busy, and everyone has their own lives to manage.

Yes, I could really get depressed and the self-pity could flow like a waterfall, pouring over anyone who would listen.

However, that’s not the life we live. Sure, we get tired, and sure we’d like mom and dad to be able to take care of their own needs, and sure we’d like to be free to go to the beach or to the movies or to just take a nap when we want one, but then I think of the great opportunity God has given us to be able to give love and care to mom and dad, and to be filled with such gratitude that we have them here with us for all of these precious days He’s giving us. And such a gift to be able to see what kind of people we’ve become and how much strength we have and how God has given us a mirror to reflect back the development of our character and who he wants us to be, and to know that no matter how the world sees us or treats us, that in our hearts, we know we’re doing something extraordinary every day of our lives because we make life easier and happier for mom and dad. So many people don’t have that opportunity. To be tested and to come out as fine gold – that’s what we’re aiming for – and somehow that goal seems possible.

More times than not, our focus is on how something will affect mom and dad rather than how it will affect us. I think we’re both less egocentric than we were before the caregiving became so intense, so demanding, so all-encompassing. We hesitate to ask for help, although we’re getting better at it.

It’s such a learning experience – every day – new surprises – many times not good ones, but the only way to get through this descending road to the end of this life is to pray, keep our good humor, and laugh as much as we can. And the answer I gave to her about the air-conditioned potty? Well, here goes:

“I guess these people want to have a high turnover in the potty. If it’s freezing cold, they can get people in and out fast. There aren’t any people outside the door waiting to use the potty right now, but if there’s ever a long line waiting to get in, we’re ready for them!”

She was happy with that, and when she’s happy, I’m happy too.

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