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

Food can be a sign…

One of the signs of Mom’s decline happened so gradually that even though we recognized a total change in the long term, we ignored the incremental changes as they happened.  Those changes revolved around food.

I’ve mentioned the schedule Mom lived by several times.  When we were little everything thing ran on schedule.  That schedule continued through Daddy’s Alzheimer’s and probably helped Mom care for Daddy during that time. 

That schedule is what we used to gauge Mom’s ability to care for herself as she got older.  As long as she was getting up, fixing and eating meals, and going to bed at a regular time, all was good.  Or so we thought…

What we weren’t seeing were the little changes.  She typically had cereal for breakfast with reconstituted nonfat dry milk.  On Sundays, she would have an egg on toast.  Lunches varied (years ago) depending on what she had and wanted to use up.  She might have a sandwich or she might have some leftovers.  Dinners were small servings of chicken or beef with a vegetable and either bread or potato.  Although Mom never was one to use spices, she always served well rounded farm meals and she continued that practice in her little kitchen after moving to my brother’s.

Breakfast stayed much the same over the years.  She continued to eat cereal and milk but at some point started heating the milk up a bit because it was “too cold”.  That was fine until my brother had to replace his microwave in the few months that she lived there.  She no longer had the ability to learn how to use it.

Lunch became very regimented.  She would have a slice of lunchmeat and a slice of cheese on two slices of bread.  She placed the sandwich in a half sheet of paper towel and put it in the microwave it to warm it – until the new microwave came along.

Dinner was the most interesting change.  Instead of a little plate with separate foods, she began creating little casseroles.  She was so proud of them!  Actually, she would break up a piece of bread in a little plastic container and add other things on top.  Sometimes it was leftovers from my brother’s meals – he didn’t dare throw any food away!  Sometimes it was a portion of a can of stew or soap.  When she first started this habit she would also put some vegetables in the mix but over time that changed.  Her dinners actually became more starch than anything else.  Her little creations were put in the microwave for warming – until the new microwave came along.

Once the new microwave came along, my brother was able to help with the use of it in various ways so that she was able to get her meals.  It wasn’t long after it came along that I started making the trip up to be with Mom during the day and learned firsthand what her meals had become.

As I look back, I realize that Mom was probably malnourished but we didn’t know it.  The story continues next time with how the story of food as a sign continued after she moved in with me.

Signs and (of) Denial

Oh, denial!  It is a stage in everything that we face in our lives, good and bad.  We see the signs of what’s ahead or what’s afoot and we don’t want to recognize them.  We gloss over them or totally ignore them or chalk them up to a “passing phase”.

I know this only too well.  My family is so loving and accepting that my daughter was 10 years old before she was diagnosed with epilepsy.  For years my call to her was “Earth to Jessie” because she was sitting right in front of me and not responding.  Grandma and Grandpa, aunts, uncles and cousins, we all said the same thing, “It’s just Jessie.”

It wasn’t until Jessie was 10 and she had a complex partial seizure lasting about 20 minutes that we realized something was wrong.  I finally took her to the doctor and started the long journey that continues to this day.

Years ago, Daddy realized that memory problems were interfering with his ability to do his job.  As a teacher and head of the science department at a local high school, he was missing meetings that he had scheduled and forgetting the names of his students and co-workers.  He retired at the age of 61 and unknowingly started his journey into Alzheimer’s.

You would think that we, as a family, would learn from the past.  Well, we’re still those “accepting” people that we’ve always been.  Mom lived with my brother for 24 years and during the last 10 or so years there, she began her journey – but we were oblivious.

I can’t tell you the order of the changes because, of course, we weren’t keeping track.  As long as she continued with her normal schedule of eating and sleeping, we figured she was doing too well to need help.  Truth was that things were changing even though the schedule wasn’t.

She had problems with dizziness so we moved her to the main floor to avoid steps.  She developed problems with constipation and talked about it a lot in inappropriate places.  She heard a doctor on TV say that an aspirin a day was good for you so, unbeknownst to us, she decided to take an aspirin each day – a regular one, not a baby aspirin.  Next thing we know she stops going to church because she’s filling the toilet with blood whenever she has a bowel movement.  The list of changes goes on and on but we were all in denial because her schedule hadn’t changed.

Please don’t think we ignored the problems.  I took her to the doctor for many problems and we fixed everything we could – hiding the aspirins that were helping the constipation aggravate her hemorrhoids, getting her on stool softeners, encouraging her to walk around the house to keep moving and eliminate some of her pain caused by sitting too much.  Truth was, though, we were fixing issues but not looking at the overall situation.  She was no longer bathing, her sleep was constantly disturbed, she stopped reading, stopped watching TV, stopped going out of the house, and more.

So, wondering if it’s time that your loved one needs help?  It’s time to dig beneath the surface and punch through that wall of denial.  But don’t feel bad – you’re not alone!

Full moon and a special day no longer remembered…

I arrived at the home today during exercise time but Mom wasn’t there.  She had gone back to her room to put her shawl away but evidently forgot to come back out.  Her door was locked from the inside so I knocked… and knocked… and knocked.  No answer.  Whitney unlocked the door for me and there Mom stood, looking toward the door.

A huge smile washed over her face as I stepped into the room and her arms went out for a hug.  Greetings and hugs out of the way, we walked back down the hall to join the others for exercises.  Sitting in a chair, Mom moved her hands and raised her arms a few times and then stopped, pointing to her shoulder.  She, and the other residents, watched as Beth and I did the exercises.  Seems they weren’t of a mind to join in today.  J

The Daily Chronicle was next and one of the residents, a former school librarian, read the one page newsletter.  Her reading skills are still quite strong and she even adds a bit of wry commentary here and there.  The residents seldom catch her quips but there are times when Beth and I can’t help but laugh out loud.

As she read, I pointed to the date on the newsletter, March 7.  Mom looked but registered no recognition of the date.  Today would have been Daddy’s 96^th birthday if Alzheimer’s had not taken him so many years ago.  The date no longer holds meaning in Mom’s mind but she still recognizes his picture.  Most days she says he is her husband, here and there she says he’s my father, an indication that she recognizes our relationship at that moment, and sometimes she even comes up with his name.

Full moon is dancing around today though, tomorrow being the official full moon.  I watch as one resident is holding a few of today’s Daily Chronicle, showing the gentleman beside her something on the page but talking about a totally different topic.  Meanwhile the gentleman, seemingly participating in the conversation, is telling her, “I’m glad we got that settled.”  I wish I would have been able to record that conversation!

Mom didn't smile because she was trying to figure out what I was holding "that thing" up for.

The full moon effect shows up in Mom in a subtle way today.  She told me she needed to go “in there” – her signal that she needs to use the restroom.  When she walked into her private bathroom, she looked lost.  I gave her a gentle reminder of her purpose but she looked at the fixtures as if wondering what they were doing there.  She told me that things “were very different”.  I pointed out the toilet and the toilet paper – she was still confused.  Then she went to her dresser to get her “bits”.  She looked through her dresser, obviously looking for something to use in the bathroom.  I let her go through her motions because I have learned that stepping in to the midst of the task can cause more confusion and have surprising (and not hygienic) consequences.

She eventually made her way into the bathroom and used it successfully.  I gently reminded her to wash her hands and we walked to the dining room where I was able to get her settled for lunch.

For now, her love for Daddy is still there but I’m happy to take over the remembrance of his special day since she can’t.

Even those with dementia love kids but…

Oh, the look on the residents faces when I walk in with my 3 year old grandson!  They are all smiles and saying hello as we walk back to Mom’s area.  Even when we walk into Mom’s area, where those residents in the later stages of dementia live, faces light up.  Words aren’t always there for them but they convey their pleasure in their expressions.

Mom really lights up when she sees a child.  I’ve only seen her when one of her little ones (great grandchildren) walks in and she seems to know they belong to her but I have a feeling she would be delighted with any child that walked in.

Yesterday, however, was a good example of how happy things can turn volatile quickly when dealing with dementia.

We arrived during exercise time and sat down next to Mom.  My little guy, Anthony, was feeling shy so he sat on my lap through the exercises and the reading of the Daily Chronicle.  The residents watched him and smiled but went on with their routine.  Snack time came next and while I passed out glasses of water, Anthony finagled a couple peanut butter crackers from Beth without asking but did whisper, “Thank you”.  J

Next up was noodle ball!  Anthony was happy to play and the residents were happy to play and watch him.  He’s 3 so I did have to remind him to share and make sure he was careful not to hit anyone but all was going pretty well.

There is a relatively new gentleman in the group who reminds me of my daddy because he calls the women “Mom” and everyone else “George”.  He talks constantly and was talking all during noodle ball.  He seemed to enjoy playing with Anthony and kept commenting on “the boy”.  Suddenly, as we played, the gentleman became upset and stood up, waving the foam noodle in a menacing fashion, talking the whole while.  It appeared to me that he was imagining some slight to “the boy” by the other residents.

Tina, the wonderful aide who cares for Mom, stepped in front of the gentleman and tried to gain his attention.  He towered over her but she is intrepid!  She worked on calming him and while I felt no threat toward Anthony, the aides were concerned so I took Mom and Anthony away from the situation.  Tina quickly calmed the gentleman and soon had him sitting on the couch holding one of the baby dolls.  Volatile situation averted.

It was another reminder of my daddy.  Daddy was in the nursing home when my son and youngest daughter were around Anthony’s age.  We went outside with Daddy and he became very agitated when we let them run across the driveway unattended.  He didn’t understand that it wasn’t a road and that they were safe.

While their memories are fading, you can never tell when a situation will bring forward an old memory, good or bad.  I know in my heart that the gentleman was being protective of Anthony but given the ravages of dementia, he no longer has the social skills to deal with the situation.  To avoid a similar situation, I think I’ll work on a different way for Anthony to visit Mom.

All tuckered out after his visit with Great Grandma!