Their time and ours – or – “I have a meeting…”

It’s not easy making the decision to place a loved one but sometimes it is for the best.  In the case of taking care of a parent, I think we feel that they took care of us therefore we should take care of them.

To a certain point, I believe that to be true.  I also realize now that when Mom was raising me, however, she was able to continue her life and it was a busy one!  Sewing our clothes and quilts, knitting and crocheting our sweaters, hats and mittens, taking care of a vegetable garden that took up an acre of land and canning or freezing everything that came out of it took up her days.  In addition, of course, she was taking care of all of us, especially me, the baby of the family of five children.

One memory of my childhood comes back each time I kiss Mom goodbye now.  I most always visit in the morning and stay until she sits down to each lunch.  She always wants to know if I am staying and is obviously looking for a place for me to sit.  My response is always the same.  “I have a meeting”, I say, knowing that response will put her at ease.  I don’t have a meeting but it is something with which she can identify.

Mom begins her process of preparing her place setting for lunch.  For some reason, she uses her napkin as a placemat.

Daddy was a teacher and Mom was a homemaker all the while I was growing up.  I remember the school nights after dinner when we would all be in the library of our home, Daddy grading papers and my brothers and sisters doing homework.  Busy during the day, Mom used that time to read, something she loved to do and hence, the reason we had a “library” in our home.

Some nights, however, Mom and Daddy would leave after dinner to go to a meeting.  They were involved in church, Daddy’s school, and the local school my brothers and sister attended.  There were also 4-H meetings because they were both leaders, separately – Daddy of a livestock club and Mom of a sewing club – and Daddy was one of the founders of the local baseball league given that he had three sons to keep busy.

So, out they would go, telling me that they had a meeting to go to.  It was sometimes frustrating to me because in my mind, I was the center of their world.  Why would they leave me?  J  One particular night, they told me I could stay up until they came back home but they didn’t tell my brother whom they left in charge.  When I refused to go to bed, I very clearly remember him picking me up and carrying me upstairs to my bed.  He was gentle and kind about the entire thing and kept telling me that Mom and Daddy didn’t tell him that.  Needless to say, I was not happy with them when they arrived home!

Lucky for me, Mom is not a child.  She may need help at times like a child and she can’t find the words she wants but there are some things that still strike a chord in her mind.  Meetings is one of those things and if a little lie like telling her that I have a meeting will put her at ease, then I can do that!

It’s so interesting…

I saw a story on the news this morning about a man with dementia, living in a nursing home, who, although unable to communicate, seemed to be comforting one of the other residents.  The gentleman’s son finally realized that his father, a medic in WWII, was comforting another resident who had been the cook for his unit in WWII.  Seems the cook was injured during the war and the medic took care of him.  Somehow his demented mind recognized the long ago friend!

You just never know what might trigger something in the mind of someone with dementia.  Recently, one of the aides (CNAs) in Mom’s ALF decided to move to Florida and go to school.  This CNA, Whitney, was an integral part of the staff so the decision caused quite a stir.

One day when I was visiting, Mom told me that she would be leaving for Florida soon because “they” wanted to try it out down there for awhile.  Grandma and Grandpa moved to Florida with her when she was little to try and make a life there.  They found they didn’t like it so they moved back.  I thought that she was just flashing back to that time of her life so didn’t think anything of it.  I just asked if she was going with Grandma and Grandpa and she looked a little confused and responded, “I guess so.”

It wasn’t until later that I learned about Whitney’s move and, of course, there had been some discussion of it.  Mom obviously overheard and thought that “they”, probably Tina, Whitney and Mom, were heading to Florida to “try it out”.

Since then, Whitney left and the residents have been enduring the process of finding the new CNA that will fit into the “family” there.  In the past, if Mom’s CNA, Tina, was off, quite often Whitney was working and took care of Mom.  Now if Tina is not there, there is no Whitney to cover and I have found reasons to be concerned about Mom’s care.

I have raised my concerns with management and they have asked for patience while they work out the staffing plan.  I can only hope that they will find a solution that will again make me feel that the Mom is well cared for when Tina is not there.

The good news is Mom is still happy.  I find her confused more often but in spite of that she still seems content.

Mom's awake and ready to play noodle ball!

We'd love to have more like her...

Today, like any day, had both happy and sad. My daughter, Jessie, and my grandsons made the trip up to see Mom with me and she was so happy to see them! She saw me first and was quite excited, just like the other day, but then she noticed the other visitors.

The funniest thing happened after we took a walk while they were getting things ready to play noodle ball. We had Mom settled in a chair ready to play and she looked up and saw Jessie. Now, she had already seen Jessie and talked to her but it was like she was seeing her again for the first time. She was so excited and smiling! I think she actually was confused for a moment thinking it was an additional family member coming to visit. Jessie's comment, "Yes, we all look alike." :)

The sad side was that one of the residents, a woman much younger than Mom but who was already in a wheelchair and pretty much uncommunicative when Mom moved in, is in the process of passing. She may, at this point, have already passed. Beth, the activities person, and Tina, felt she wouldn't make it through the night.

It's sad when the residents pass on and at the same time you can't help but feel relief for them that their journey has ended. I've watched over this last year as many have progressed from walking, talking and enjoying activities to sitting huddled over and uncommunicative to finally passing on.

Through it all, Mom continues to bop around like she's not 96 years old! I looked at Beth today after our conversation about the other resident and told her that Mom is going to outlive us all. She said, "We'd love to have more like her!"

Oh my goodness! Putting her in the assisted living facility has made her healthier!

This may sound really strange but when I first brought Mom to live with me, there were times when I thought she was at death’s door.  I would call my brother, whom she had lived with for 24 years, and he knew exactly what I was talking about.

Fast forward to the present, after spending a year living with me, and now a year living in the ALF and again, OH MY GOODNESS!  I swear Mom is going to outlive us all!

I drove up for my visit today and when she saw me, she got all excited and held out her hands to hug me.  I helped her up from the couch and she held on to me, telling another resident, “This is my daughter.  She’s mine… well, and my husband’s too.”  J

We walked around outside for awhile and sat in chairs in the sun while she exclaimed over the blue sky and how much she loved it and told me about the plantings and she and Daddy had done part of it and other men had helped with the rest.  She talked and talked and some of it actually made sense although it was all wrong – but she thought it was and I just went along with it.

The days aren’t always so clear.  Some days she doesn’t know me at all but not often.  She usually recognizes my face although she can’t come up with a name for me or anyone else in her family.  Some days she doesn’t recognize the family (in pictures) and sometimes she does.  I don’t know until I arrive.

Physically, however, she is thriving.  The only issue we see is that her ankles swell now and then, typically when Tina, her regular aide, and Beth, the activities person, have been off for a day or two.  I think she sits and sleeps on those days.  Other than that, their meals are obviously working wonders – and they should because their menus are all about nutritious meals for the digestive systems of seniors.  That care definitely shows on Mom!

Back to the mental part though.  Mom still has everything packed into her dresser, ready to move at a moment’s notice.  Not that she wants to, it seems, she now says she doesn’t know when they will come in and tell her she has to leave.  I assure her that they don’t want her to leave and that the family knows where she is so all is good.

It’s always fun to see what she has decided to put on her dresser.  It is the only place she will display anything and what is there changes from time to time.  I quite often take a picture and share it with my family on Facebook so they can see who rose to the top that day.  Here’s today’s picture – note that Jesus is sitting in the tray from her false teeth container…  the funny side of the mind!

He really does watch over us…

Some might think I am crazy but my first memories involve Mom, Daddy and God.  Sometimes all together as in going to church or getting ready to go to the hospital when I busted my head open on an iron radiator when I was about three.  Sometimes it’s just Daddy as when he came into my preschool class at church to play piano or when he taught me to sing “Jesus Loves Me”.  Sometimes it’s just Mom as when she made me lunch in a lunchbox and we ate it outside on a quilt in the yard because I wanted to be like my big brothers and sister and have a lunchbox or when I played under the quilt frame while she worked on a quilt for one of our beds.

Sometimes it was just God.  Most vivid is the memory of our big old house, built in the 1880s, and how noisy it would get when there was a thunderstorm.  I was so scared of all that noise and the thunder and lightning!  I can remember being as young as three and hiding under the covers and saying a prayer to God, “Please God, I’m scared, could you please make the storm go away?”  I can’t say if the storm went away or if I became peaceful enough to sleep but the next thing I would know, it was morning.  As far as I was concerned, God was there watching over me.  I have carried that feeling throughout my life.

I would not claim to always have listened to Him – sometimes I have made huge mistakes that obviously were not in His plan.  I eventually realize my mistake and, not without trial and tribulation of my own making, I am led back to the path I should take.  I also never ask Him, “Why?”  I figure that’s not for me to know but there’s a purpose to all.

So why is this all on my mind?  Well, many changes have been occurring with the residents at the home.  Over the last year I have watched the steady progression of the disease and eventual death in some, others are following that path quickly.  For the most part, it’s really been a calm ride but every once in awhile there is a resident that acts out and can be a danger to the aides or the other residents.  There have been a few times recently when I have helped the aides as they tried to deal with these situations without anyone being hurt.  I truly appreciate what they deal with on a daily basis!

Still, you probably wonder what God has to do with it.  When Daddy was 69 and far into his journey with Alzheimer’s, he suddenly didn’t know my brother and ran across two fields and jumped three fences to get to our neighbor’s farm and get away from my brother.  He was VERY healthy!  Shortly after that, he checked himself into a local hospital that is known for geriatrics to get some testing done.  A half hour after he arrived he forgot why he was there, wanted to go home and became violent.  They immediately gave him a sedative.

No big deal, right?  Unfortunately, Daddy had never taken any medication so the proper dosage for his height and weight hit him like a ton of bricks.  He was out for the better part of three days and when he woke up, had to be reminded how to chew and swallow again.  Although a week or so before he had run across those fields and jumped those fences, he never walked again.

I don’t think any of us ever felt there was a reason to be upset with the hospital because they had no way of knowing what would happen, nor did we.  I believe that God was watching out for Mom, knowing that Daddy had progressed far enough that she needed more help.  Daddy went directly into the nursing home and Mom spent every day, all day, with him but never had to deal with violence – because he was no longer mobile – and was able to get her rest every night at home.

Do I believe it was supposed to happen that way?  Definitely!

So back to food…

The story of food in our family is complicated yet simple.  Growing up, if it was grown on the farm, we ate it.  Daddy planted a huge garden every year, first with a horse (before my time) and later with a tractor.  Mom not only picked fresh vegetables and fruit for our daily meals but canned and packaged more every day to hold us through the winter and to harvest of the next growing season.

We also had a milk cow and raised our own cows for beef, chickens for eggs and meat, and rabbits.  Daddy and my brothers did the butchering and Mom packaged it all up for the freezer.  So between the garden, the animals, the walnut and fruit trees and berry and cherry bushes, we ate well!

As all of us kids grew, married and move out, Mom continued putting up food for quite a long time, even putting up enough that we all had some too.  My girls still like only canned green beans and frozen corn because that’s the way Grandma made them!  It wasn’t until Daddy was too far down the path of Alzheimer’s that she quit but she still provided Daddy with wonderful, well-balanced meals.

The gardening, canning and cooking skills eventually faded in the face of Mom’s dementia.  As I said before, we missed the signs for a long time. 

When we finally realized the situation, I thought I could improve things once she moved in with me.  I was able to give her healthier evening meals but I quickly decided to stick with her preferred breakfast and lunch because I found I had to pick my battles.  Her preferred breakfast and lunch may not have been the healthiest but they weren’t horrible.  So I left those alone and instead fought the bathing and other battles.

What I didn’t realize, until Mom moved to the Alzheimer’s facility and began eating their planned meals, was that Mom obviously has some digestive issues caused by particular foods.  Again, we are in some ways too accepting of our situations.  We knew that Mom made many trips to the bathroom every day – sometimes as many as five times in just a half hour.  We didn’t think about looking at the food she was eating, we just thought she had issues with digestion in general.

Now, after almost a year in the facility, Mom’s aide, Tina, and I have come to the conclusion that Mom has trouble digesting milk in any form.  I can always tell now when she has had some type of milk with a meal because those are the times she is constantly running to the bathroom – even in the middle of her meal.  Most days, however, she is able to have several hours between trips.

Despite the issue, Tina and I haven’t made a recommendation to take all of Mom’s milk away.  After all, she’s 96 now and why would we want to prevent her from enjoying ice cream?

Mom's favorite - chocolate!

If we would have known this years ago – hindsight is 20/20 you know – we could have helped Mom make changes to her diet.  For now, we’ll just try to keep the milk intake to things she really likes.  Like ice cream!

They try to communicate...

Although this is a really large cake, I'll continue my story of food in my next post.  Meanwhile, Mom turns 96 this week.  We had a little party for her on Sunday but I'm not sure that she ever really understood what the hoopla was about.  Life for her is quite often a mystery.

To give you an idea of life for someone with Alzheimer's, there was a video documentary on PBS last week taken in an Alzheimer's care unit and focusing on one particular resident.  I missed it but it is available for viewing online for a few more days and I took the time to watch it there. It depicts the disease very well and gives you an idea of what it is like to have a conversation with someone with dementia. http://video.pbs.org/video/2216780249/

I recently took a seven minute video of Mom but I was unable to upload it here.  In the video, you can tell when she's trying to find words and she rambles.  She actually managed to stay on topic for a good bit of the video but it was very disjointed, she didn't respond to questions, and she is never able to actually get a point across.  It really makes me wish I had a video of her in the past.  She was so full of family history and knowledge of sewing, knitting and more. 

She's here, but I miss her so much...

I'm currently participating in a fundraiser for the Alzheimer's Association.  If you would like to contribute, it would certainly be appreciated by me and all the others dealing with this disease that slowly takes their life away without taking their body.  http://www.alzgive.org/jeannielange