By Carol O’Dell —

For many of us, caregiving for a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. (Personally, I think it’s higher than that). And it’s not all the women who are doing the caregiving.  I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia. These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

Why does caregiving my spouse scare the bejezus out of me and most everybody else?

Because my husband is my strength, my rock, the person I can rail against, nag, complain about-but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it. We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

Here are some of the reasons I came up with. I’ll vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7-I’m very independent.

I don’t want him to be weak-for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her slowly die.

I don’t think I can manage our life/finances/home without him.

I don’t want the fun times to be over-the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida where I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic!? He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true but embarrassing example is a light-hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right self-serving.

The only thing I can offer is:

• Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
• Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted-or they all heard something different.
• Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.

If You’re Already Caregiving:

• Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
• Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
• Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
• Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
• Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

Caregiving a spouse is so hard. Why? Simple. Because we love them.

At the end of my talk, a very sweet woman purchased my book and asked me to sign it. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too.

I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough.

Caregiving our spouses may be the hardest, and the sweetest thing we ever have to do.

I’m Carol O’Dell, author of Mothering Mother

Tags: grief, hope