How Long, O Lord?

Well, okay, my question is not the same as that of Habakkuk, who was in pretty dire straits waiting for his text message from God.  What has struck me this week, though, as I have read all the the stories of bloggers here, and have looked at the Lewy Body Association website, is that I might be in for a really long haul here.

Some of  folks have been caregiving for 10+ years! Here I am, thinking that it’s no big deal to take a couple of years out of my hitherto oh-so-exciting life to take care of Mary. Her decline has been so dramatic in the last two years (she was still driving then!) that we all figured she’d only be able to live in her home for another two or so. Her symptoms, however, are nowhere near as advanced as Lewy carees I have read about.

Now I have to face the realization that I might actually die in my traces here. I’m 66. Ten years of Mary and I’m 76.  Time for folks to start looking for my caregiver. So this is not an interlude. This is my life. Somehow, I have to make it count for something.

Things I am exploring are:

1. How to make a living while my time is broken up throughout the day between caregiving and time away from Mary (and I am grateful that at this point I do have time away from her). Mary has no money to pay me and NY has no program to provide stipends to caregivers.

2. How to do something constructive with my time when, as noted above, my time away is fragmented throughout the day.

3. How to deal with days on end of speaking to no one but Mary and, perhaps, the checkout person at the grocery store. Oh, and my cats Papaya and Prince Hairy. There has to be a positive spin on this one somewhere – nurturing my monastic side?

4. Making this a vocation, rather than just a job. This one is tough, because Mary is not, say, my sainted sister, but a real little s**t.

5. Developing mental discipline to keep myself motivated to be more consistent with  meditation and exercise regimens.

My situation is pretty easy compared to most I’ve read about. I certainly don’t have the emotional pain involved with caring for a loved one. I am not whining, but have been hit with something that I hadn’t expected: a little frisson of panic at the thought that this is it. I am sure others have experienced this. I am just new at the game and feeling my way.


5 thoughts on “How Long, O Lord?

  1. Bette

    Oh Kristin,

    I’m so sorry. I understand,in a much smaller way, what you are feeling, and it is a pretty awful feeling. I can remember when my mother first came to live with us, thinking…okay maybe I’ll have a break from all that caregiving entails before the kids get to college– Maybe I’ll be able to enjoy some uninterrupted time then…our oldest is headed to college in 3 years.

    I think your question is close to Habakkuk’s, in that he was looking for answers and achieving complete faith. Kristin, I’m not so sure that is possible here on this earth. So, we continue to search and ask…and trust. God wants us to trust Him, which we do the best we can at, but that doesn’t mean there won’t be (lots of) questions along the way. Not that we don’t believe or trust, but that we try to understand.

    You are doing an amazing act for this family. You contribute so much every day. You are smart to think of options for you. If I was not able to talk with another adult besides my mother (who has dementia)in a day, I would be in a really rough spot. Seek that out Kristin, that will be a very healthy find.

    You are a very strong person–and even stronger to watch out for you as well.

    Thinking of you and hoping you are able to find some things for you–ultimately that will benefit everyone.

  2. Avatar of DeniseDenise

    Hi Kristin–I think that’s what is rather insidious about caregiving: It’s either so much longer than you can ever imagine. Or, so much shorter. And, you just never know.

    You are very, very wise to create your exploration list. The list looks just terrific. Will you keep us posted as you move through the list? I’d love to learn what you learn. :)

  3. Avatar of KathyKathy

    You know Kristin,

    I used to think that very thing about others being so much farther along.
    I remember thinking, But Hubby seems to be doing so well, and then the thing about Lewy Body, it can decline pretty rapidly.
    And just when you think you have a handle on something, it changes!

    None of us know when out time is up, Lewy just gets the all aboard call. Some trains may move out faster than others.

    We live a very alone and isolated life here. Our poor aide has to listen to me rattle on talking non stop. I try not to share much with Niece, she is still just a kid and I choose not to burden her with things of Lewy. So I don’t get much personal contact with others and when I do blab blab blab!! LOL

    Even funnier, Some times I start and can NOT stop talking. My brain says “SHUT UP” but my mouth just keeps moving!
    Also may be why my posts are a little long winded too hmmm. ;-)
    YAY for blogging you you guys!

    I too wonder, what will my life be like when my role is finished. I will need to find work. With no higher education and min job skills, I’ve been a home maker most of my adult life, I may have a tough go of it. But those are tomorrows worries.

    I love your list. Things to explore and goals decide and achieve.
    Ever thought about knitting or crochet?

    Thinking of you!

  4. Karen


    Your list of questions to explore is a good one for all of us, I think.

    Even though my mother is–well, maybe not sainted, but usually positive and optimistic, I still find myself asking a lot of the same questions.

    It’s important–and so very difficult–to keep ourselves physically, mentally and emotionally healthy while trying to deal with all of the demands of caregiving.

    I guess that’s why it’s so important to share and to help prop each other up.

  5. Kristin

    Thanks for all your helpful and supportive comments. It’s so wonderful to be a part of this group. Kathy, I am all thumbs and completely incapable of producing anything with my hands. I tried for years to learn to crochet and knit, to no avail. The only thing I have ever been good at is providing therapy, and that’s out for now. Few people can get up this driveway between Nov-April. But I’ll come up with something.


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