I love the brief moments of clarity…

Mom’s routine continues.  Her aide awakens her in the morning and gets her dressed and then she has breakfast in the dining room with all of the residents.  After that, the majority of the twelve residents gather in the living room for the morning news, exercise and one or more activities.  Mom sits in her rocking chair there with a view of the entire area.  Although she doesn’t participate in the activities any longer, she holds her baby and watches everything happening around her as the morning progresses, snoozing here and there.  Twice each week her morning routine is disrupted briefly for a shower which makes her tired and she snoozes more.

Snoozing after her morning shower.

Lunch time arrives and typically she is ready to go in the dining room and eat.  The times she refuses lunch are very few and far between.  She may be 98 but she still eats well, just small portions.

There are more activities in the afternoon either in the living room or the TV area.  Her preferred seating in either area allows her a view of the comings and goings of the staff and visitors.  It’s very different from when she lived with my brother and later, me.  At our homes she spent all of her time looking out the windows, watching everything happening in the neighborhood.  Now her neighborhood is indoors and has enough activity to keep her interested.

Five o’clock comes and it’s time for dinner.  Again, Mom eats well.  My sister reports that sometimes she has to remind her how to start eating but she seems to take off well once started.

Evening is more time for sitting and watching until it’s time to get ready for bed.  Days flow one into another with the routine. 

While her days may be consistent, we never know exactly what we’ll find day to day.  Mom, for the most part, is past her combative stage, although it will pop up here and there, mainly at shower time.  She is definitely past her anxious stage – at least what seemed anxious for my very laid back Mom.  She typically smiles at everyone and I hear that she is pleasant.  I know when I arrive she is always pleasant.  She just doesn’t always know who I am.

I always carry my tablet and I use it to show Mom pictures of family.  I start with her “momma” and “daddy” because she can always recognize at least one of them, usually both.  I move on to pictures of Daddy or her and Daddy and mention that he is her husband and my daddy with each picture.  I tell her that she is my mommy and I am her daughter.  Her response varies each time but if she didn’t recognize me as “hers” when I arrived, she usually knows by the time I leave.

If things are going well, I’ll move on to pictures of me and my siblings and I go through the names.  I was at that point the other day when, in a brief moment of clarity, Mom looked at me and said, “You were named after my mom.”  Indeed I was!  My middle name comes from my grandma’s middle name!

She is seldom “here” but when she is, it pulls at my heartstrings.

And she sleeps...

When I left to visit Mom this morning, I planned to manicure her nails.  They have gotten very long but I've been visiting with little one(s) in tow and haven't had the opportunity to do the job.  My sister always carries a file and she keeps them smooth but Mom's nails, like mine, grow unbelievably fast.  Must be where I get that trait.

So, I arrived today to find Mom sound asleep in her favorite rocking chair, legs sprawled out in front of her.  It was so cute.  She had slid down a bit and every once in awhile, she would use her feet to rock - just a bit.  I touched her and rubbed her arm a bit, even gave her a kiss, but she didn't wake up.  She opened her eyes at one point and saw me but I don't think it really registered because she fell right back.  All the while, she was sitting right next to the computer and speakers that the RNA was using to play the Price is Right and Who Wants to be a Millionaire with the residents.  She was not sitting in a quiet area! 

I got out the clippers and file thinking that the manicure would wake her up.  Nope!  I did both hands, clipped and filed, and she never opened her eyes.  Changed position slightly at one point but didn't wake.  

As she slipped a little lower in the chair, the RNA and I worked together to lift her and put the chair cushions in their proper place.  Still she didn't wake.  I rubbed her back before leaning her back into the chair.  Still didn't wake.  God love her!  I know I do!

Sound asleep but all manicured!

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!

Noodle Ball, Toilet Paper Holders and Cookies!

You just never know what you’ll find when you walk in to see Mom!

Last week Mom was able to move to a room in Clare Bridge, the area of the home that is for the more advanced stages of Alzheimer’s/dementia.  Good for Mom but sad because that meant that another resident had finished her journey and passed on.

I wasn’t there when they moved her but evidently she saw her things passing by and immediately jumped in to help.  She’s so happy to have her room there where she can go to it whenever she wants!

I visited the morning of the move and must have arrived shortly after she had settled in.  I had my granddaughter and our little Hurricane with me and when we walked through the door, the residents, including Mom, were playing noodle ball.  What’s noodle ball?  Well, you blow up a balloon and use those foam noodles that you take to the pool to bat the balloon around.  It’s great for stimulating eye/hand coordination and working the minds of the folks there.  You can imagine Hurricane’s reaction…  It was his first visit and it took a few minutes for him to warm up but he was soon playing noodle ball right along with them!

After the noodle ball was over, Mom took us the few steps down the hall to her room.  She was so proud of it!  Just pleased as punch!

Yesterday I visited again and, as is my habit, I went through her drawers to see if there was anything of concern.  I found a half full snack bag she had hidden away and gave it to her to munch on while I continued to look through the drawers.  At first glance, things looked okay but as I looked deeper, I found her purse was full of pretzels and a great big cookie!  The RNA and I had a good laugh about that as she took the purse out to empty it.

I also noticed that Mom had tucked various pieces of clothing in the drawers.  My nose doesn’t work too well but I suddenly got a whiff of something and as I worked my way through the clothing, I found an obviously soiled shirt – good thing my husband wasn’t there because the smell wasn’t pleasant.

Once my foray into Mom’s dresser was finished, we headed out to the hall to do some walking.  Mom wanted to go outside but I had to tell her no because of the extreme heat we’re experiencing.  So, we just kept walking around the hall.

As we were walking, one of the gentlemen came out of his room carrying a toilet paper holder – the little springy thing that you put the roll of toilet paper on.  He was telling me something about it with a big smile on his face.  It’s so much fun to interact with the residents!  I alerted one of the staff and she checked in his room to see if he had taken it from there.  No, so into the next room to check.  Sure enough, he stole it from someone else’s room.  It must have been the day for it because I also learned that one of the other gentlemen had just pulled his entire toilet paper holder off the wall leaving a big hole in the drywall!

What fun!  Never a dull moment, that’s for sure!

Pet Therapy and Bus Rides!

I just returned from a LONG visit with Mom.  J  Before I get to that though, I should tell you about my visit last Thursday.

After a conversation with the Life Enrichment Coordinator some time ago, I knew that my daughter’s dog, a wonderful black Lab, could visit Mom.  It just so happened that my grandsons had left on a trip and Bonnie was feeling lonely so my daughter and I took Bonnie with us to visit Mom.

When we arrived, the Life Enrichment Coordinator met us at the door – and proceeded to take us around to all the dog lover residents in the main area of the facility.  They were thrilled to see Bonnie because their pet therapy dog had not been around for quite some time.  When we finally got through the main area, we made our way back to the smaller area of the facility where Mom spends her days.

When Bonnie walked in, everyone stopped what they were doing and my daughter took her around to each of the residents – and Mom, of course. 

Bonnie was well petted and even took a liking to one of the gentlemen and lay on his feet.  J  I think they’ll be very happy to see her come back again any time!

Today I went to visit by myself.  I had planned to visit today but received a call this morning asking if they could take an x-ray of Mom’s chest to make sure she didn’t have pneumonia so I was happy I was heading up there.  When I arrived, I expected to find her sounding terrible but she smiled and sounded just fine.  I could tell she was a little more tired than she normally is when I visit but her appearance didn’t indicate discomfort.  I heard her cough a couple times while I was there and figured that must have been what caused their concern.

We took a little walk around as I usually do with her and then we sat down and did the puzzle while some music was playing and one of the residents was dancing with an aide.  Mom enjoyed the puzzle and gave me that smile that I was used to seeing when we finished one.  After another little walk, we sat down and watched a show about animals on TV and she really seemed to enjoy just sitting there with me, dozing off here and there while we sat.  She showed me a nail that was a problem and I proceeded to do a little impromptu manicure.  Again, she was very pleased.

While we were sitting there, the Life Enrichment Assistant asked if I would like to take a bus ride with them.  She was taking ten of the residents for a little ride and thought I might like to join Mom.  I said sure and just a little later we all piled into the bus and took a nice long ride on some pretty back roads.  Mom dozed through some of the ride but definitely enjoyed getting out.

The length of my visit went from two hours to almost four but Mom enjoyed it and I enjoyed being with Mom.  A good day!

Family Celebrations Are Over… For Mom

On Sunday we had a birthday party to celebrate Mom’s 95^th – which she officially turned today.  It was bittersweet because the doctor has suggested we curtail her involvement in these family gatherings now because they are too hard on her.  I remember the trauma Daddy suffered the last couple of holidays before he moved into the nursing home.  It was so sad that he could no longer enjoy his family.

In this stage of her dementia, I find it is better to wait to tell her what is happening so no mention was made until an hour before.  I mentioned it then because I wanted to wash her hair so it would be fresh for her party.  She was happy to hear that her family was coming to celebrate, less happy that she had to have her hair washed, and expressed disgust when I told her she was turning 95 on Tuesday.  I’m not sure if she was upset about the 95 (she often says she is 102 or 104) or the Tuesday.  J  She went along with me though and I washed her hair without incident. 

Whenever I have to tell her something that will rock her world, I know that she will be in the bathroom multiple times and she was in there 5 or 6 times in the following 45 minutes and then multiple times during the party.  The thought, or possibly the inability to actually get her mind around the thought, sends her intestines into an uproar.

As the family arrived, Mom smiled and told them she couldn’t remember them, pointing to her brain.  It’s a busy time of year but almost half of her 70+ descendents attended and everywhere she turned, she found family.  She soaked up the hugs and kisses!

As time passed, I watched as she moved around the house, obviously disturbed by things being out of place and so many people around that she couldn’t remember.  She sat down and ate her meal amidst the commotion and handled it well but after eating, she went out and sat down by my brother.  I’m pretty sure she needed to feel safe and he provided that comfort whether he realized it or not.

Only term missing was "Big Meemaw" as Hurricane calls her.  :)

After dinner and birthday cake, Mom started her typical harrumphing at me.  It’s a pointed stare with a clearing of her throat that indicates she is ready to move on, or in this case, get everybody out and things back to normal.  I ignored it, pretending I didn’t notice and eventually everyone headed home and we were able to get the house back to normal. 

“Normal” is key to taking care of someone with Alzheimer’s/dementia.  They like routine and they do not handle clutter well, nor do they like things out of place.  Having a house full of people and the kitchen a mess was definitely NOT “normal”. 

With the house back to normal, Mom was finally able to settle into regular routine.  As I hugged her goodnight at 9:00 pm, I assured her it would be just “us two tomorrow”.  Her response was an emphatic, “Good!”

A Day in the Life…

Some people probably wonder what it’s like to be a caregiver for someone with dementia.  It’s certainly not a vocation for everyone especially as the loved one declines and more care is needed.  Initially the caregiver needs to handle the mental side of the situation but over time, more and more physical care becomes necessary.  At this point, I seem to be one of those people that can handle it – as long as I get some respite on a regular basis!

My day begins at 5:42 am when the alarm goes off for the first time – yes, I admit it, I hit the snooze twice before actually getting up at 6:00 am.  My husband quietly heads downstairs to take his shower and I stay in our room to do my exercises, hoping that Mom will stay asleep until at least 6:30 am.  By 6:30 I open the hallway gate and head out to the kitchen to prepare breakfast for the three of us.  Mom usually gets up by that time and begins getting dressed and ready for breakfast.  At the same time, my husband has finished his shower and we all sit down to eat breakfast together.

By 7:00 am or so, after finishing my breakfast, it’s my turn to shower.  My husband gets things ready for his workday while keeping an eye on Mom as she finishes her breakfast, makes her bed and decides which chair she would like to sit in for awhile.  J

The morning, in Mom’s case, is devoted to snoozing.  I squeeze in the changing of the Depends and taking care of her feet, or a bath if it is Thursday, and I throw in a snack midmorning.  She loves her banana!  Meanwhile, while Mom is snoozing, I alternate between cleaning, working on the computer, doing laundry, etc., depending on what needs to be done that day.  Since Mom is not able to carry on a conversation I generally have the TV on while I work and she sometimes sits and watches.  If she does decide to talk, I always have that pause button!

Lunch is at noon and the afternoon is spent working jigsaw puzzles.  At this point in time, it seems to be the only thing that Mom likes to do on a regular basis.

By 4:00 pm, the countdown begins!  She will check the clock and begin asking about dinner and when the time comes to make it, she stands there and watches.  At 6:00 pm we sit down, say a prayer and eat our meal.  Although she doesn’t say it with us, each night Mom thanks us for saying the prayer.

After cleaning up from dinner, Mom and I sit down and watch TV and she begins the countdown to her 8:00 pm bowl of frozen yogurt.  At 9:00 pm, she’s off to bed and we head that way too, shortly after 10:00.

I’m sure it sounds like an easy day and for me, it is.  I can listen to the same comments over and over and provide the same answers over and over.  I keep an eye out as she wanders around the house just to be sure she is safe (like when she just decided to touch a pan on the stove to see if it’s hot).  It’s easy but by the time I go to bed, I am truly tired.

Mom is Bored!

Yesterday, definitely due to the gray days and maybe because of the full moon, Mom was bored!  Along with bored came Snippy Mom – not really bad or mad but not really satisfied either.

She was up and dressed before 6:00 am – have I mentioned that a caregiver never gets to sleep in?  By the time I exercised and began getting breakfast ready within our normal schedule, it was easy to see Mom was getting impatient.  Lots of clearing the throat and harrumphing were coming from her direction.  When I put her breakfast on the table and told her it was time to eat, she didn’t understand me and said, “I’m going to have to write a letter to my family and ask them [about paying for this].”  The words at the end were quite jumbled but it was easy to understand she was talking about money.  So maybe she thought the service wasn’t what it should be?  Too funny!

As the day progressed, Mom spent little time sitting, instead moving from window to window most of the day.  I couldn’t seem to get her interested in any activities and she kept sighing as she moved around.  She was bored!  That may not seem so surprising but Mom taught all of her children and grandchildren that there was no such thing as “bored” because there were just too many things that a person could do.  Unfortunately, when I mentioned to her that she was bored, she told me there just isn’t much that she is able to do any more.  That is one of the sad states of dementia.

The one thing she did ask numerous times yesterday was if we were going to the store.  She was concerned that there were only two bananas in the bowl and that we had to go get more.  No matter how many times I explained that two would be plenty for the morning and we would wait and go tomorrow she continued to worry that we would run out.  Under normal circumstances I would have said, “Let’s go,” but since we had just received almost two inches of snow again, I really didn’t want to get her out yet.

When my husband came home, we decided to get her out of the house.  We went to Max & Erma’s for dinner and then headed to Ollie’s where I walked her all around the store.  She complained a bit but we made it through the entire store.  I think it helped the restlessness a bit.

Before bed, I told her that she should stay in bed until 6:30 because typically I am up at 6:00 to exercise and by 6:30 I am getting breakfast ready.  It worked and breakfast this morning went smoothly.

Today I will take her to Jessie’s for a visit while I go to an appointment with my allergist.  That should give her a nice break in her day because the boys are home from school and there are lots of animals to pet!

Vacation? Are We Crazy?

(Originally written on November 23, 2010)

Most caregivers would rightly tell you that taking an elderly person with dementia or Alzheimer’s on vacation is a BAD idea.  The trauma of traveling and living in a different location for even one night can set off all sorts of behavioral issues.

In spite of that, my husband and I decided to take Mom with us for our week in the mountains.  It’s close enough to drive in five hours (normally) and our little tree house there has a second bedroom and bath just for her so we thought it might work out.

It was a much needed vacation.  We’ve greatly reduced our weekend camping and skipped a summer vacation since bringing Mom to live with us.  We weren’t willing to give up our timeshare week.

That left us with the issue of Mom’s care.  Family members work or have children so outside help would be needed if we didn’t take her.  Although I checked into in home respite care, like a parent of young children, I had no desire to suddenly throw Mom in the hands of a stranger.  

Decision made, I packed surreptitiously so Mom wouldn’t suspect.  Better to let Mom know the morning we were leaving rather than letting her work herself into a frenzy.

The drive, as expected, took longer than normal but went well.  Mom snoozed, watched the scenery and enjoyed our stop for lunch and snacks. 

Given her dementia, she settled into her temporary “home” pretty well.  We brought her bedside lamp and the roll around foot stool that she uses when she watches TV to make her feel at home.  She struggled with the queen bed a bit because she is used to her twin but once I helped her turn down the covers each night, she would settle in just fine.

Our wings were clipped a bit because many of our typical activities were unsuitable for Mom.  We still managed to have a great time!

The highlight of the week was the visit of a cockatoo from a nearby bird attraction.  Didi, a beautiful white cockatoo, ran across the table and right up Mom’s arm to rest on her shoulder.  Didi then proceeded to preen, even feeling comfortable enough to stand on one leg on Mom’s shoulder so she could reach some hard spots.  Mom loved the attention and talked so quietly to the bird, showing no fear at all.

Mom also enjoyed a few meals out including a potluck with music by three gentlemen we have known for a long time.  Friends staying close by spent an evening and day with us and we even put Mom in a wheelchair and took her shopping and to the national park for a visit to their museum and a walk outdoors.

Did the week go off without a hitch?  No, but it was still enjoyable. 

I’ve Never Seen Anything Like That Before!

(Originally written on October 19, 2010)

One of the perks of my 24x7 job caring for my 94 year old Mom is the return to childlike innocence.  Granted, it’s not always there but it definitely shows up on a daily basis.

Just today, as we took a little trip to the grocery store, I thought it best to put Mom in a wheelchair grocery cart so I could do the pushing and walking.  My normally healthy mom is still dealing with the lingering effects of a cold so pushing the big cart all around the store, her usual job, would be too taxing.

When she realized what I was doing, she sat down with a smile and said, “I’ve never seen anything like this before!”  That may not seem to be an unusual comment but she has ridden in them many times in the past when my sister used to take her shopping.  Today, however, it was all new!

The job of caregiving is not an easy one, I’ll admit.  I’m the first one up each morning and the last to bed each night and in between I’m cleaning, cooking, and watching over what you might think of as an adult toddler.  Raising a toddler is difficult enough but add to it an adult brain that flows in and out of awareness and you have a whole new ballgame!  One minute I might be dealing with an amiable person who is ready and willing to go along with anything and the next minute it may all blow up in my face with death wishes (Mom saying she wants to die) and a few cuss words thrown in for good measure.  Those are not the moments to dwell on – even though they do, at times, make for funny stories.

In the midst of this continual ebb and flow, if I take the time to pay attention, I am given the opportunity each day to look through the eyes of a child again and count among my blessings the things I would overlook.

Just taking a short walk down our sidewalk I might hear, “I’ve never seen the sky so blue!”  A minute later, “I’ve never seen those things (clouds) up there before!”  A few steps farther, Mom comments on a tree adorned in its autumn colors, “Look at that tree!  I’ve never seen anything like it!” 

It can be anything at any moment that will catch her eye.  It may be something she has seen all her life but at that moment, it is all new and wondrous.

Did I know when I started this journey what I would find?  I had watched my Mom care for my dad as Alzheimer’s took his mind so I had an idea.  But did I really know what I would find?  I have to say no because for all the pitfalls of doing this job, it’s seeing the things around me through a child’s eyes again that is the unanticipated blessing.