Tuesday, March 16, 2010

Hearts and Flowers and Tears, oh my

Or , "Happy Third Anniversary at Home, Mom".

Three years ago, my Mom came "home" to live with us. I can still remember that day so vividly. I remember the horror I felt when I saw how sick Mom was. How happy I was that she decided to stay with us, and how terrified I was that The Stepdad would succeed in his efforts to lure her home again.

Most of all, today I remember how much better she was then. Not just physically better - her body is actually healthier right now today than it has been in many years. But mentally, she was so much... sharper. She could make decisions. She could care for herself, and cook a meal. She was still able to write a check. She could sign her name - and she was at that point, still quite able to administer her own affairs. She was still an avid reader then. She still played the piano. She was still mostly... herself.

She was.

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I told Twinks and TW that this year I wanted NO flowers. In fact, we all agreed that our celebrations going forward will be a bit more... muted than in the past. Too much excitement and Mom gets flustered and upset. It's just easier. So, we all agreed; no flowers, no "big deal" about Valentine's Day. We would exchange cards (Mom still enjoys picking out greeting cards) and I bought four small identical heart-shaped boxes of candy.

It wasn't until I opened the Valentine's Day card this year from my Mom that it really hit me just how far she has deteriorated.

I had helped her pick out the card; for the first time ever, she had trouble picking out an "appropriate" card. For Twinks, she had picked a card that was for "Baby's first Valentine's Day" and for TW & I she picked up a card that said "To my husband...". So, we put those back, and I helped her pick out some other cards.

Inside of Twinks card, she wrote "A happy day for all!" and signed her name.

Inside of the card that was for TW & I, she had written the following, in a child-like fashion across the interior face of the greeting card:

TW
Twinks
Mom!
Happy Love

Then she signed her name at the bottom, and wrote

Love Love Love

I kissed her, and thanked her, and then went to our room where I cried. I stood at the window, and looked out at the back yard, and cried because at that moment I realized just how far she has deteriorated. My incredible, wonderful, brilliant mother, easily the smartest woman that I have ever known, has not used my name in written or spoken form for the more than 9 months. Last July, on my birthday card, she put "Happy Birthday Mom". At the time, I had hoped it was an anomaly; a glitch. Now I know differently.

I know that she knows *who* I am. Well, I think she knows who I am. More importantly, she knows that I am the person who cares for her. I call her "Mom" or "Mama", and I prepare her medicine and I prepare her food. I help her shower and wash her hair, and sometimes with other personal grooming needs. I take her to the doctor, and the store, and to the Sonic to get a cherry limeade. I buy her puzzle books, and coloring books, and I sharpen her coloring pencils. I do her laundry, and change her sheets. I suppose I am more "caregiver" than "daughter", more "mother" than "child" these days.

Every night, she kisses me, and tells me "Good Night!" and "I love you!". But she never says my name. Ironically enough, she says TW's name, and Twinks name. Just not mine.

And, G-d help me, it hurts.

I know it is the disease; the dementia has robbed her of the ability to remember and/or use my name. I get that. But it doesn't dull the pain. I fear now that I may never again hear her say my name. Stupid, I suppose, but when you are watching someone you love die by degrees, the little things often become absurdly magnified.

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I seem to find myself in tears more often now. It is so hard, this caregiving thing. There are times when I can begin to "see" Mom in a nursing home now. I know that we are heading that way; there is no possibility of a "recovery". Mom is terminal - her brain is dying. The question for me becomes "when", and not "if".

I have so many dilemmas now - we must try to "spend down" her money so that Medicaid can help pay for the nursing home. I need to talk to our attorney and see what I am supposed to do about the family farms; if I will be allowed to buy them from Mom, or if we will have to sell them because of the stupid 5-year lookback on Medicaid. I need to try and apply for Aid & Attendance for Mom to help offset some of the expenses; we are rapidly being drained dry, and I hate this feeling that at some point I may actually have to choose between her medication and food for the table. I worry that if I don't get some respite soon - a real break, not just a couple of hours - that I may crack under the strain. But I feel guilty about spending $180/day just for respite care for Mom. I look at that amount of money - for just 10 days off, $1800 - and I think about how that is one month's worth of medicine for her. And I feel selfish.

And so, we go on.

Twinks is still... Twinks. Only 16, and ready to conquer the world, and the Fibromyalgia be damned. At least until she gets home, and gives in to the pain. And I try to hold her, and comfort her, and agree that it *isn't* fair, and that she *should* be able to do the same things that her friends can...

And TW's parents are now both sick; his dad with prostate cancer (slow-growing, being treated, but still...) and his mom has been in the cardiac unit with heart failure...

And I am here, in the wee small hours, with my box of tissues.

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I will be fine. I have TW, the man who raised the bar so high for husbands everywhere. I have Twinks, the Amazing Wonder Kid. I have a lovely home, and a nice minivan to drive, and I have the honor and the privilege of loving my Mom away - while she slowly makes the transition out of this world, and into the next. And I have you - my friends. And that counts for a lot. :)

Thanks for your love and support. My tissues and I both appreciate it! ;)

7 comments:

Daughter said...

Thimbelle,

This is Lydia618 from the www.alz.org website. I've subscribed to your blog. Thank you for sharing- I hope we both can be a light to others going down this terribly dark path...

Rurality said...

Wow, 3 years, it doesn't seem that long ago. Sending you lots of hugs.

Michelle H. said...

Lots of love and hugs, Thimbelle. Hang in there.

Ericka said...

ah, hell, thim. this living, it's not for the faint of heart, is it? i'm sorry that life is handing you lemons right now.

i'm in coastal north carolina - it's a great place to visit. if you need to get away, the door's open.

*hugs*

weird - wv is phylls. my mom's name is phyllis, and one day i'll be going thru what you are, but w/o a wrench of my own. *sigh*

Chuck said...

Well, without being a full-time caregiver, I do know exactly how you feel. My Mom seems to recognize me but using my name is rare these days. And she can still read, but she can't retain anything...and she is a former freelance writer with a master's degree in English, and she can't even write in her journal any more. I still enjoy doing things with her but it is hard sometimes. Good luck with everything...and remember all your readers are in your corner as well. Some very nice writing from you, as always.

Thimbelle said...

Thanks everyone.

Lydia, I'm looking forward to getting to know you better! :) (side note to my other friends - I met Lydia over at the Alz.org forums where we both post)

Rurality! Thanks for the hugs - and I'm so glad just to see you here! :)

Thanks, Michelle. I am always glad that Sully introduced me to you!

Ericka, if I could, I would run away and play with you for a week! LOL! Don't give up hope. TW and I didn't meet and get married until we were both OLD! It isn't *when* you find each other that's important, it's being open to finding your own personal Wrench! ;)

Chuck, I am sorry to hear that your Mom isn't writing anymore. I know this isn't an easy journey for you, (or your sisters) either.

Suldog said...

Thim:

I could tell you how sorry I feel concerning your current situation, but that's not the point, is it? I don't think it is. Let's close this paragraph with the thought that you and the rest of your family are always in my prayers, and leave it at that.

You have no idea how much I admire your strength. We all have our crosses to bear, but yours seems to be getting heavier as of late. It will lighten. You know that, of course (but that lightening of burden is, perhaps, something to dread in itself.) You are amazingly strong, though, so you'll get through it all with grace. Of that, I have no doubt.

I wish I could offer better words, or actual physical help of some sort. You're such a sweet person, and I'd love to be able to lighten your load in some way. If there IS a way, you just let me know. I mean that. And don't hesitate for even a moment.

Even if you just feel like unburdening, writing a bit, I'm here (and so are many others.)

God bless. Give my love to Twinks and The Wrench.