Tuesday, March 20, 2012

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.

Sunday, March 18, 2012

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!

Wednesday, March 7, 2012

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 96th 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.

Friday, March 2, 2012

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!