Words from My Brother

After I wrote my brother--the one closest in age to me--an email updating him on Mom's decline, he wrote back with these words:

It makes me so sad to hear that Mom is going downhill so fast.  I thought that she was hanging in there as she has for awhile.  Your family and Dad have shouldered the load so much and I am truly grateful for your efforts.

"So sad."  Yes.  Me, too, brother.  Me, too...

What She Can Do

She's going downhill, and it's happening fast.

After analyzing my mom's condition for years--and being thankful that her decline was so very gradual and slow--we are now realizing that a new stage is upon us.  Things have changed.  She's losing abilities right and left, and it seems so quick now.  The knife in my heart keeps turning, digging deeper and deeper.

Hundreds of times over the past three and a half years since I started this blog, I have thought about what I should write here: usually incidents that occurred that showed how much the Alzheimer's had taken over my mother's mind.  But I very rarely actually took the time to sit down and write.  So much of the story of her decline has slipped away.  Perhaps that's OK.

For tonight, however, I want to capture a snapshot of who she is now--specifically, what she can still do.  I don't have any idea how much longer she'll keep these abilities; but for now, I'll pause and appreciate them.

~ She remembers my daughter's name.  At her most recent visit with the doctor for her regular check-up about Alzheimer's, she could not, when he asked her the names of her grandsons (specifically, my sons, the ones she sees every single day), come up with any of their names.  She could, however, tell him that my girl's name is Moriah.  :)  Even though my daughter is the youngest of my children, she obviously stands out in my mother's mind, and there's something really special about that.

~ She can feed my daughter.  Sometimes in the pre-dinner rush, I ask my mom to sit beside Moriah's highchair and feed her yogurt or applesauce or something like that, and she can do that.  An extra pair of hands at that busy time of day is a genuine help!

~ She can pray before a meal.  Since there are nine of us who eat dinner together, my mom's turn to pray before we eat doesn't come around very often; but when my husband calls on her to pray, she does so very willingly.  Her prayers are rather slow, long, and almost always include topics that maybe most people wouldn't include in a prayer before a meal; but it is obvious that she loves her God, loves her family, and puts her heart into her prayers.  I'll admit that, to my shame, sometimes I chafe at the length of her prayers; but then I remind myself that one of these days, her voice will be silenced.  I know when that day comes, I will long for the chance to hear her pray just one more time.  With that in mind, I have learned to value the precious times when she prays before our dinner.

~ She picks up sticks that fall from our many trees.  Using her pick-stick, she is able to gather sticks from the yard and put them in boxes to be used as kindling in our woodstove.  Despite the monotony of the job, she LOVES it.  As a matter of fact, monotonous jobs are really the only kind she can do now, so it's good that she enjoys them!  :)  I am truly grateful for her help with this because those sticks sure come in handy when I'm trying to get the fire going on chilly mornings.  :)

~ She washes dishes.  This is another job that she LOVES to do.  Nearly every evening--unless I send my parents on their way after we finish eating--she stands at the kitchen sink and starts washing the dishes I place on the counter as I clear up the table.  Tonight she had to ask me which way to turn the handle of the faucet to get hot water.  Often she asks me which dishpan goes in which side of the sink.  Sometimes she asks me if the soap sitting by the sink is the right kind to use.  But she very cheerfully scrubs away at the dishes and seems so pleased to be able to help in that way.

~ She makes iced tea.  My husband drinks iced tea all the time, as does my mom.  Since I'm still nursing my baby, I don't drink it as much as I would like to, but I do drink it some.  And the person who makes all the iced tea that we consume is my mom.  In the past, I have tried to make it, but it just doesn't taste as good as hers does, for some reason.  She sweetens it with stevia, rather than sugar, and so far she is able to make it just fine.  We're waiting for the day when she...oh, I don't know...puts salt in it instead of stevia or something like that.  But for now, we'll keep drinking her sweet iced tea and be grateful that she can still make it and contribute to the family in that way.

~ Even if she doesn't remember their names, she LOVES my boys and is so warm and affectionate with them, especially when it's time to say goodbye and go back to their house for the night.  My two younger boys can't let my parents out of the house without wanting hugs, and my mom is great about giving them enthusiastic hugs and telling them that she loves them.

~ She is the best at expressing gratitude to me, especially for the dinners I make.  I don't think an evening goes by that she doesn't specifically pause to thank me for the delicious dinner and the "fellowship" (the word she always uses) before she leaves to go home.  Her spirit is so gentle and agreeable and cheerful and uplifting, and that is a true blessing.

~ Believe it or not, she can still play the piano for their church.  When it's her turn to play (once a month or so), she plays several pieces for the prelude, one for the offertory, and usually accompanies some hymns, too.  Dad has to coach her about when to start playing and things like that, but her ability to correctly play the pieces is ingrained in her head sufficiently that she can still do it!

Remembering these successes helps to encourage my soul, especially because I'm more apt to remember her "failures" from the past few years.  Like the time she made a pie for us, but forgot to bake the crust.  Strawberry pie with an unbaked crust is not the most appealing thing I've ever eaten.

Or the time (several years ago) when she wanted to help with my laundry, so she found some clothes in a laundry basket in the laundry room and folded and put them away.  The only problem was that they were dirty clothes, not clean, and I had the difficult task of going around to everyone's closets and drawers and trying to determine which clothes she had put there that needed to be washed instead.

Or the time I was at their house when she got a message about making a fruit salad for a meal at their church.  She turned to me and asked, "How do I make a fruit salad?", then got a paper and pen and started trying to carefully write down the exact directions.  ("Mom, you open a jar of peaches, and then open a can of pineapple chunks, and if you have a banana, cut that up and put it in...")  And this is the woman who always had a big crystal bowl of fruit salad in the winter and would add various fruits to it to keep the salad going.

Or the time she and Dad were trying to pack before a trip to the beach with us last summer, and things were going so poorly that Dad was nearly at the end of his rope.  I had to intervene and do Mom's packing for her, which took me all of about five minutes and which I didn't mind at all.  I told Dad then that anytime they need to pack to go somewhere, I will pack for her.  There is simply no possible way she could do it herself.

Or the times, while we were at the beach, that she compulsively organized and reorganized the silverware drawer.  Take out the spoons, match up all the teaspoons, decide where to put them, grab all the forks, separate the salad forks, put them back in...over and over...  I don't know how many times she did that during our week at the beach, but every time she did it, I cringed.  "That's what a mentally ill person would do," I thought, and it made me wince to realize that that's what she is.

Or the night at the beach when she got up to go to the bathroom and became disoriented.  I was staying up late that night reading a book, and she came over to where I was sitting at the table and sat down beside me.  She then proceeded to explain something to me, but I couldn't understand ANYTHING about what she was saying.  She was COMPLETELY confused, and again I had the thought, "This is a really sick person.  We talked them into coming to the beach with us, but I feel like we brought along a nursing home resident.  Maybe we shouldn't have been so persuasive.  Maybe Mom would be doing better if she were in her normal environment at home."  (Although, on the other hand, I think Mom really enjoyed being there, so as it turned out, it was a good thing they went along.)

Or the evening fairly recently when she was standing at my kitchen sink washing dishes, then looked out the window to the top of the hill where our neighbor's machine shop is, and thought she saw people on the roof of it.  I looked and couldn't see a thing--just pine trees waving their branches, but certainly no people on the roof...and my vision is still good enough that I don't even have to wear glasses, so I trust my eyes quite a bit.  She was adamant about it though; and although I tried to change the subject quickly, she kept remarking on the fact that she was seeing people--including children--on the roof up there.  Really?  Are we at the point of hallucinations now?

Or a phone conversation I had with her yesterday.  I called my parents' number, and she answered.  Dad wasn't there.  She didn't know where he was.  Of course, she didn't know when he would be back, so I didn't even ask that question.  Then she said, "I think I'm getting ready for something, but I don't know what it is."  When I asked if their small group was getting together for dinner that evening at IHOP (my only hypothesis about what she could be getting ready for), she didn't know.  She sounded so lost.

It hurts my heart more than words can say to see her as a lost little child.  She's supposed to be my strong, capable mother!  But I know the decline is inevitable and things will only get worse, so for tonight, let me simply say, "Thank You, God, for what she can still do!"

While There Is Life

Some time ago, I saw the following quote on Facebook:

Treat your parents with loving care...

For you will only know their value,
when you see their empty chair.

As always happens when I think of my parents' eventual death, deep sorrow gripped my heart; and I was reminded that, no matter how difficult things become as they age...no matter how helpless my mother becomes because of Alzheimer's...no matter how much pain I experience in this time of extended mourning...these are days to appreciate--days that will be gone and will not return.

Someday those empty chairs will stand as a vivid reminder of what has been lost.  But while my parents are still here to fill them, I will be glad.  While there is life, I will give thanks!

I Need to Remember This

Sometimes I forget.  This reminds me.

When I Get Some Free Time to Read...

...I know I can find helpful encouragement here.  I'm looking forward to that free time.  :)

Nearly Five Years Ago

While going through some old emails today, I discovered some written nearly five years ago by my sister-in-law and my brother.  They caught my attention as I read them today because they concerned my mother's progression into Alzheimer's.  Five years has made a big difference, with small, day-by-day changes that are not always noticed.  And then suddenly, you read an email from five years ago and realize just how much has been lost in those years.  Sobering.


Here are some excerpts from the emails.


My sister-in-law wrote on November 12, 2007, after my parents had visited them...
I have to tell you though, you know how Dad is always worrying about Mom having Alzheimer's?  Well, I noticed BIG TIME that she was telling me the same stories literally over and over and over again.  She must have told us at least half a dozen times that the new roof cost 13K and made Dad tell us over and over, and you could tell it greatly pained him.  And, she told me the same story about your sister several times... and this is after we had had discussion at great length about the subject.  Then, she turned around only a few short hours later and proceded to have the exact same discussion with me with the same gusto as she did the first time around and I could tell she had no idea we had talked about it before.  I think this is the first weekend that I have ever really sat up and said... "hmmmm.... maybe there is something to what Dad is worried about!"  I didn't say anything to her, of course, because I didn't want her to be upset or anything.  Maybe it was so shocking to me because we don't see her all the time.  Have you noticed her forgetfulness being more prevalent?


In response, I wrote this...

About Mom's memory...throughout the past 4 years, ever since they visited us in Israel in the fall of 2003, I have had moments here and there of being shocked by her memory loss.  That visit to us in Israel was the first big time when I could hardly believe how much she had gone downhill, and of course I shed tears and was quite emotional about it (only with my husband--not with Mom or Dad).  Since we've moved here, for the most part, I have felt like she's actually doing fine--holding steady with her memory--not improving, but not losing it too fast.  I hardly know whether it's safe to say that I've noticed her losing it a lot more recently or not.  What I do realize is that she definitely has memory problems.  But so do a lot of other older women I know...and honestly, so does Dad.  I can't even count how many times he has told me the same story, and I stand there patiently but internally think, "I know this, Dad.  I've heard it half a dozen times already!"  :)

 

With that said, I can completely understand how she may have come across to you.  I know she repeats herself A LOT.  And I know that she compensates for her lack of memory by writing EVERYTHING down.  When she's at my house and I want her to remember something until she gets down to her house, I've learned that I have to pull out a piece of paper and write it down for her, or she will forget it.  I guess that's become second nature for me to do that with her.  And really, it's probably become second nature for me to hear her tell the same things over and over...and maybe even tune that out a little.  Or sometimes I can stop her and say, "Yeah, you told me about that!" and deflect the conversation that way.

 

I guess what I come back to is that Mom and Dad are doing all they can to help maintain her memory--and they've done that for years.  There's really nothing else to do at this point to help her.  But as I stare into the future, I am fairly certain that eventually her memory will get much worse and we'll travel down that hard path with her.  Whenever Dad brings it up with me, I try to reassure him that God knows the path that is laid out for her, and we are here to help, etc.  What else is there to say?

 

Anyway, I really appreciate your input because you have a different perspective since you don't see her all the time.  Like I said before, there are times when I do what you did and sit up and take notice of the fact that there really is a memory problem.  But most of the time, we just adapt and live with it.

 

Oh, another thing...I find myself being protective with her in new or different situations.  For example, if we're in a restaurant that is a little unfamiliar or if we're sitting in a place that's not visible from the bathroom, I'll often go with her to the bathroom to make sure that she can find her way back to our table again.  I obviously don't tell her that I'm doing that!  :)  And most of the time, she probably doesn't even need that.  But I do find myself watching out for her in different ways and being protective.  When we're in conversation with other people, I try to jump in --sensitively--to help her when she forgets what she wants to say.  Anyway...it's an interesting journey!

And then my brother wrote this...

Thanks for taking such good care of Mom and Dad.  My wife and I really appreciate it.  At some time, there probably will be a time when we will need to pitch in a little more with the care.  It will be tough from a distance, but we'll do as much as we can. 

A few days later, my sister-in-law added this to the conversation...

We cannot tell you enough how THANKFUL we are that you are right there to help out Mom & Dad.  We'll just all have to go on knowing that both she and her memory are in God's hands!

Yes.  That's all we can do.  Even though those words were written nearly five years ago, they're still just as true today.  I'm grateful for His strong hands to guide us as we continue this walk into shadows.

Quote I'm Pondering

Being a grownup means assuming responsibility for yourself, for your children, and--here's the big curve--for your parents.

~ Wendy Wasserstein ~

What do I do when what seems best for me, or for my husband, or for our children does NOT seem best for my parents? How do I balance it all?