Uncomplicated Relationships

“Mom, your lunch is ready”

From her slumber she replies groggily

“Lunch? I thought it was dinner time”

Moms sits at the head of the table which faces the  outside through the sliders and to her left is a picture window. It is a fairly wooded backyard with lots of birds. The view outback  is beautiful in every season.

“Pretty blue sky”

“Yes, it is”

 a minute passes, maybe…

”pretty blue sky today”

”it’s beautiful”

 

Mom will fixate on a word  or a phrase,  occasionally I can predict what the phrase will be for the day. Her thoughts are elementary these days.  Anything slightly complex is too confusing for her, she gets frustrated.  The frustration shows in her eyes  and it is incredibly difficult to watch.  “Eyes are the window to the (soul) heart” they say,  it’s true, I swear that I can see her heart through her eyes.

It is hard  for us to think in simple terms once complexity becomes our norm.  In moms case she no longer has a choice. Her brain just wont let her get to the right stuff.

It still amazes me to think of what she would accomplish in a day or a week  and the organization and drive it took for her to do it. The complexity in which she lived, I believe she was happy for the most part.  She is one to be admired, life was not at all simple for her,  she could made it look that way though.

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Kids always keep things simple, for them I believe it is because they don’t know anything else yet.  For mom it is because she can no longer manage the complex thoughts.  She connects with young children quite easily.

Mom  will lean forward in her seat and put her hands out in front of her and wait (patience is one of her older traits), sooner or later someone may arrive to her outstretched hands and  when they do her eyes change and  they soften.

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Paxton held moms hands today and just looked at her for the longest time (I couldn’t take a picture because I was so involved in watching and admiring their simple intensity) and mom was smiling, then all of a sudden Paxton launched herself up on mom and gave her the best hug ever.  As I was watching Paxton, (my  2 year old granddaughter) with mom, I realized that their relationship is quite simple , with an overflowing amount of  love.  Mom truly lights up when my grandchildren (some of her great grandchildren) are around her.  She interacts with them on their level.  Even when she doesn’t understand what they are saying she is happy with them around.  They color, they sing,  they chat, they smile and hug. Accepting and uncomplicated love.

 

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Over for an afternoon visit, Timmy, (my 2 1/2 year old grandson) insists on coming outside with me to help  get mom  off of the day care  bus.  He will start chattering to her right away, before she even has her foot on the ground, he chatters  about, I’m really not sure what its about, but he goes on and on. Once off the bus , mom will  acknowledge that he is talking to her.

“you don’t say, well you have a lot to talk about”

as she leans in to me

“What is he saying?  I have no idea what he is talking about”

she is smiling the whole time and often reaches for his hand.

 

Timmy will run in and up the stairs, talking to mom the whole time.

He will wait at the top of the stairs still chattering away as she forces her knees to bend enough to get up the stairs. Timmy connects with mom wholeheartedly and it is obviously special for them both.  He points to her chair and takes her cane or gets the other cane in the corner.  He will walk around with her cane for a bit, he always returns it to her. Timmy and mom might roll the ball, and chat, they eat cookies, go outside and sometimes watch Mick.  (Mickey Mouse) Most days, when he is leaving, he will run over to her and give her the best  good bye hug, sometimes he just blows her a kiss.  She smiles a big smile (again her eyes soften) and blows a kiss back.  Accepting and uncomplicated love.

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The kids keep things simple, most adults unconsciously ignore or think they have outgrown the simple.

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The kids will do the same thing over and over and over and each time they will find humor, fun and entertainment in that same action.  We enjoy watching them.

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Paxton:  “momma do it again”

Megan:  “ready set go”

Paxton:  “again”

Megan:  “ready, set go”

Paxton:  “again”

We have  all been part of  the repeated actions/sayings of kids and know  how cute/funny/sometimes annoying it is. Yet we will continue that repetition for a very long time because it is obviously making them happy.

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After a visit to Megan’s, when mom and I were riding home in the car,  is when I truly realized the connections with children and old people.  The 10 times Paxton wanted  Megan to repeat the game actions, and the 27 times mom mentioned the color of the sky are as different as they are similar.   Similar because it is what their capabilities  happen to be.

“Pretty Blue Sky today”

“very pretty”

the traffic starts to pick up the closer I get to Fall River and I focus on my driving

“pretty blue sky, not a cloud in it”

“I know, huh”

my mind wanders and a minute or two passes

  “pretty blue sky today”

… I didn’t respond, I just thought.  I thought about Paxton “again momma” and I thought I need to  acknowledge moms comment,  ( commenting on the sky).   I halfheartedly converse with her about the sky, (of course) but  as unimportant and repetitious as I feel it is, it is probably the most uncomplicated topic for us to share and for her to think about as we travel back home.  I don’t need complicated conversation that minute. Mom and I  can no longer converse with any complexity. Just hearing a loved ones voice can be reassuring and comforting.

Frustrating, it is, to try to vary a response to her repetition and do I even need to?

We are willing to play and repeat the same game or song or activity over and over again with a 2 year old,  while we smile and giggle with them.  Yet we will become  frustrated when it is an 89 1/2  year old that repeats the same few words, sayings  or ideas over and over again.  Why would our expectations be greater for someone who is no longer capable of the same cognitive function as they once were?  This cognitive deterioration is the realization that the conversation needs to adapt to the individual going through the process.  Just as we adapt to the 2 year old. The frustration, at least for me,  is sadness for the loss that I already feel.

“Pretty blue sky today”

“It really has a variety of blue shades and as you look straight out it is white, did you notice that mom”

“I do now, and the clouds are gray on the bottom”

“funny, that the sun is shining at the same time as gray clouds are here”

“maybe it will rain later”

then we were quiet

 

The innocent qualities of children  are  very similar in some ways and drastically opposite in other ways to an adult with dementia/Alzheimer’s.    The appreciation for the simpler things leave our minds for what we perceive as more important things and we really don’t ever welcome simple  thoughts back.

Until a circumstance jolts you back.

We arrive home and saunter our way into the house.  Mom shakes her coat off into my hands and shuffles to her chair.

“be it ever so humble”

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For Your Information;

 I was researching it a bit and found that there are places that have a combined day care situation .     What a fantastic idea.     The preschool inside of a nursing home.  Just read these articles and think…. why wouldn’t we do this?

Caregivers most definitely get frustrated, but so do the individuals we are being cared for.  There are many resources available.  What frustration must she be going through.   

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The Value of Relationships (1)

This is number 1 in the “Relationship Blog Series” and each will consist of  various  relationships mom has formed over the years.

In 90 years of ones life a lot will happen, a lot of places will be seen, a lot of people will be met, relationships formed, memories will be made.

People will touch each of our lives quite differently.

Research has shown that there is true life expectancy value in our relationships.  

It is hard to describe moms cognitive state.   How does her brain decide what stays and what goes?  Does she have any idea how much she doesn’t remember?  Is what she  remembers associated with an event? Does she remember what she has been through?  What does she remember about each relationship she has made over the years?

I think of the relationships that she has had with so many others over the years and wonder how each of them influenced who she is. Probably early year, I would guess.

Mom was my first female role model and she had quite and impact on me. She was strong and energetic. She was relatively even tempered  and  happy. Loyal and loving to her family and friends.  Her attitude, its just crazy, when the chips were down (and that’s an understatement) she picked up the chips and stepped forward.   One step at a time, but she did it. Mom is either modest or naive because she is so unaware  of her inner strength. She was caring and kind; she never (ok, rarely) had a bad word to say about anybody.  Fun, funny and often times quite witty, she always enjoyed a good laugh. Her glass was usually half full. 

We lived together the first 17 years of my life.  As I matured,  and my relationship with Mom evolved,  we were not only mother and daughter but also  “friends”  and  eventually “best  friends “.   I know a lot of mothers and daughters develop this kind of amazing  friendship,  and I hope it is as strong as ours.  Living together for the past 32 years has allowed us to strengthen and create this amazing bond, I’ll call “best friends”. 

The 4 of us

You know what though, I really need to describe the relationship, “best friends” with a few words and examples;

• its unconditional; nothing that either of you will do could possibly change how one  feels about the other.  Is it because we are mother and daughter or is it that we have been part of each other’s lives for all of my life (61 years)?
• you have a trusted confidant; the ability to  confide in another individual with the reassurance there is no judgement.  My confidant, will still listen and she will show her concern with an expression or a knowing nod, (even when she doesn’t understand) but she no longer  gives an opinion and I crave it.
• ongoing respect/admiration/trust;  thinking  so much of each other for what they have achieved because of who they are.   Our respect/admiration for each other is mutual, even now as she struggles to maintain her dignity while her mind and body try to let her down, I have to admire how she is handling  aging and old age. She trusts me completely and I know that.  I want others to  know and admire her for who she has been and respect who she is.
• supportive; emotionally, financially, physically, whatever the other needs, always.  The support that mom needs these days goes  far beyond what I had imagined she may need.   (emotionally) I see her looking  at me and I smile at her,  I think she needs assurance that all is good.  I always kiss her goodbye and goodnight, letting her know I am here.  (physically) I will hold her hand as she walks and pick her up when she falls, I’ll hook her bra, comb her hair, put her socks on her feet,  cut her toenails and change the battery in her hearing aid.  (financially) She is now my dependent, financially and more.
•  fun loving; sharing time and enjoying the company doing what you enjoy. (Ex.staying up late to play Nintendo , getting  peanut buster parfaits after the kids go to bed, spontaneously going to visit Paul and Bernie) We are still having fun  and taking our adventures as circumstances will allow. Sadly though I seldom see that look on her face or the sparkle in her eye that was there when she was having fun.
• sharing; thoughts, emotions, tangible things, experiences, time.  We have shared everything.  She seldom shares her deep  thoughts with me now,  but we share quiet snip-its of conversation and lots of time sitting together, sometimes we walk out back. We share a touch, holding hands, a ride in the car and a look.   We can still share many experiences,  it is just on a completely different level these days.  Sharing has a different value to me now, and time has become the most important part of our sharing. It just doesn’t matter what we do.
• giggle buddy; sharing a similar sense of humor, that you can giggle about the same silly things, giggle till you cry, and as mom would say “tinkle a little”  kind of giggle.  Although it is not as frequent as it once was, I still find  that on a rare occasion I have my giggle buddy.

Don’t think for one minute everything was always rosy, I mean we can not exclude the fact that we also have had many  differences and disagreements.  That is all part of a relationship. Also, did I mention  we are both a little stubborn.   Even through our differences our friendship never wavered.

Everyday I miss moms participation in the  relationship that we have  developed  and grown accustomed to over the years .  This change  in our relationship has been emotionally punishing.

I just wish I knew if she misses the same things that I do (how can she miss something if she can’t remember, but does she remember, is it in there somewhere?)  There are moments when we look at each other – and for a second  it is a familiar, however brief, look – but my heart catches for a minute, wishing it would last longer, but then it’s gone.

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Katie and I took mom to have our nails done. (this is an adventure/an experience for us)  It was a nice pampering, and it was different, we don’t always pamper ourselves and rarely get manicures. It was an afternoon event really.  (it was another thing we could share, with little physical effort on her part, she poops our quickly)  We even stopped for lunch, (soup at Panera).

 

When we arrived home (about dinner time, mom eats by the clock) Bob asked to see our nails and we both modeled our newly manicured hands for  him .

” nice, very nice and did you ladies have a good time?”

without missing a beat, and in her old witty way….

” oh yes, we did, but I thought you’d have dinner on the table by now?”

the comment took us all by surprise and we burst into  laughter ( my giggle buddy).

In my mind I said “there she is, that was her,” for that moment, she had returned.  I wanted to cry along with the laughing. I miss her sense of humor.

It was fun, even if it was just for the moment.  That was three weeks ago.

“I can’t believe how long this manicure is lasting”

“I know , huh, your nails still look great mom”

Sometimes she seems to be so aware , alert and participatory for a couple of minutes, hours and even once in a while a few  days.  Then for whatever reason she retreats once again.  The times between the old mom returning is becoming shorter lived  and further apart,

So where does our relationship go from here?  Does our relationship have the same value to her now (since she doesn’t remember everything) as it once did?

 For me,  there is more value to our relationship now than there ever was.  It really has become about the moments.

 

This is it, full circle, with my best friend.

 

 

 

 

 

 

She Sleeps

 

“mom, would you like a cup of tea?”

…no response

I peek into the living room and there she is, fast asleep in her chair.  It is what she does most of the time now.

Sleep.

Unless I keep her out of the chair and busy.  ( and by busy I mean coloring, or talking on the phone, sitting on the deck, having a cup of tea,  her word searches have even  become too much for her) Even then it  only lasts for a  short while and she will be right back to “her spot” and asleep shortly after she arrives there.

Before she started going to day care, she slept a lot and I was concerned about the amount of sleep and lack of stimulation.  I wanted her to be doing more, even just swiffer the floor or dusting the furniture.  I wanted her to be like she use to be. I wanted so badly to be able to” fix her”.

When she first started going to day care, she would come home exhausted and that was good, after all she was having a full day.  That was the point, keep her busy and active and  interactive. Make her days more meaningful.

Mom is up early during the week,  about 6 usually, she has always had an internal clock and there were times I didn’t  have to wake her, lately, though,  that seems to be changing.  She routinely gets picked up by 7 – ish or so by the day care bus.  I have a calendar of events that gets sent home so I know it can often times be a busy day. (guest students come in, or they play games, listen to music, sittercise, and now she even gets her showers there) I love that, it is all so important.   I have to be away at work so it is our  a perfect arrangement right now.   She arrives home at about 3:30 ish.  I meet her at the bus to walk her in the house.

“how was your day?”

“oh good, uneventful, really?”

She climbs up the stairs,  at least it appears to me that it must feel like a climb to her, a long climb.  There are 6 steps  (split entry) for her to climb at the end of her day. I’m sure she longs for that spring in her step now. I always walk behind her and sometimes give her butt a little push to help hoist her through that final step.

The dogs are anxiously prancing around for mom to come in  and up the stairs, excitedly wagging their tails  waiting for the attention and the affection she will show them once she makes it to the top of the stairs.

“hi babies, wait till nana gets in and Ill pet you”

“did you miss nana today?, I missed you too”

As soon as she is at the top of the stairs – we take her coat off and I hang it up, she  will shuffle over to her chair, it’s “her spot” (we all remember that relative, and that is how you will always remember them, in their  particular spot) .  Unavoidably she will groan.

“whats the matter mom?

“oh nothing, my knees don’t want to work.”

shuffling to her chair

“I’ve been sitting all day but I can’t wait to sit”

“thats ok, go ahead and sit”

It really is only a matter of minutes and she will nestle in and pull the afghan (that she made, and it’s beautiful) up over her.  She taps the arm of the chair inviting Rookie (the small dog) to join her.  More times than not Rookie does and they nap together for a while before dinner.

 

 

After her full day, it is an earned nap time.

 

Poor mom.   I can’t help but think that she must be making up for all of those hours of lost sleep from her younger days.  First with  dad, on occasion they had late nights, then kids, and no one sleeps with young kids, or even during their teenage years.  Mom will tell the story about the time  dads mom (grandma King) was staying with them for a short while after they were first married and one night when mom and dad  arrived home in the wee hours of the morning,  grandma King  was waiting up and spoke “rather harshly” to mom about  “keeping daddy out so late”.  Quite funny now, but mom was quite upset, as you can imagine, a new young bride, at the time.

I love the weekends for the simple reason that there is no reason to rush up and out.  We can take a leisurely approach to morning.

Most  weekends now  I will inevitably  have to check on moms breathing at least once in the morning.  How in the world does she know she can sleep in?  (She doesn’t remember what she had for lunch, or even 5 minutes ago –   I will never grasp, how, in her sleep, she knows it is the weekend ) Many times she has slept until 10 and that has never been her thing.

Mom sleeping with Delilah and Rookie

“I can’t believe I slept so late”

“I can’t believe you did either, but its okay, its the weekend”

After  the normal morning rituals , medicine. coffee and breakfast , Mom will make her way to “her chair”. In the cooler months this is where she is camped for the day, in and out of sleep.  In the nice weather I will be sure to get her outside for a while and she usually will find her comfy chair and nap out there too.  If here is activity she will “watch and nod” all through it.

She also sleeps anywhere.  She has even fallen asleep making gravy a couple of years back.  We thought that was funny, because it was unusual.

 Rehearsal dinner for Katie and Tims wedding, and some of her loving grandchildren, once again found this to be entertaining.

 

Who falls alseep during the super bowl?

Sometimes she is just in a zone, almost nodding off and sometimes she is out cold.

 Either way and anywhere, she is where we are.

 

Usually when she falls asleep, she is sitting up and  she is leaning her head back so her hair gets matted and sticks up all over and  it is so thin.  Sometimes I see her in the mirror trying to comb her very thinning hair over her exposed head.  I have tried helping by curling her hair, or using special combs to add volume. I have even tried stylish hats.

“I’m not a hat person”

  There once was a day when she could whip her hair into a beautiful french twist, throw in a few bobby pins and she looked fantastic.  Her hair was thick and darkish. She was always quite meticulous about her appearance.

 

She  can no longer  make the effort to see the back of her head.  You know how new babies have that bald spot when they are tiny, due to the laying on it, that is the comparison I have.

I try to be sure that when we are going out in public that she looks and feels  put together.

Mom  is  such a  beautiful person inside and out.

   She is just tired.

Our bodies get tired as we age.  All of our parts have been doing what they are suppose to do for , in her case about 90 years.

………….and have served her well.

Our routine after  dinner is pretty close to  the same  every night;  mom will look at the clock and try to wait a bit before going  to bed.

“I suppose it is silly to go to bed now when it isn’t even 8 o’clock, but I’m tired”

“mom just go to bed if you are tired, you’ll be more comfortable”

“I think I will, I’ll probably read for a bit”

We say our good nights and off she will go.

She doesn’t read.

My bedtime routine has evolved to include a few new things.   I will quietly walk into moms room and check her hearing aid, to be sure it is open (saves the battery) then I walk over to her and take off her glasses.  Sometimes she will giggle a little.

“I didn’t read much”

“Its okay, mom, I love you,  sleep well”

and I kiss her head

“love you too”

she snuggles in under her covers  and I turn out her light.

She sleeps.

 

Hearing Loss is more than not hearing

We started planning mom’s 80th birthday party a year in advance because we all wanted to be able to make it for this milestone event.  We are all so spread out across the country so we knew this was going to need some serious coordinating.

The five of us talked back and forth until we decided on the exact date  and then we had to be sure we could all get the time off  from work.  

“Deb, did you hear what I said”?

“Well I’m outside now talking to you because Mom got her hearing aids and I can’t talk in front of her anymore.  so, no I didn’t what did you say? ” 

“We booked our flight”!

“I can’t believe this is all coming together and she suspects nothing!”

Mom had her new hearing aids for her 80th birthday birthday party and it was fantastic. The 5 of us and most of our families were together for our three day party.

Mom loved it.  She was so happy.  When she is around her family she is always so happy.  I was so happy that she was able to have the hearing aids before her party.

So much fun! Look at Mom 🙂

 

 

Acquiring hearing aids for mom was a costly event the first time around – they were over $6000.00.   

The bigger battle, however,  was convincing her that she needed them. Then convincing her to wear them.  Have I mentioned she can be a little on the stubborn side.

“Mom, do you want a chicken for dinner?”

“What?”

“Do you want chicken?”

“I didn’t understand you,stop mumbling”

A little louder

“DO YOU WANT CHICKEN FOR DINNER?”

“ sure, how are you thinking you will  cook it?”

This was how most of our conversations were going for a long time.  We got that card in the mail that most people get that says something about hearing loss and a free exam and blah blah blah.  I’ve always pretty much ignored those ads.  

I started reading about hearing loss and how normal it was for people in their 70’s to lose their hearing.  I came across a few articles talking about hearing loss and cognitive function. Read that article ,  because after I did, I called and made her initial appointment for the free hearing exam.

She did not want to go for the exam and she did not want to have hearing aids and she certainly did not want to pay for them.  I can be pretty persuasive with mom, and I felt I needed to be.  The fear of her losing her cognitive abilities was a big deal.  She had already started with repeating herself and forgetting  things, and of course we attributed that to “old age”.

Long story short, she got her hearing aids, and wore them.  For a few years it was  great, she participated more in conversations and seemed to be back to herself.  (even though I didn’t realize there was a problem  with her not being her normal self until after she got the hearing aids. I think she was slightly depressed)  She was in her late 70’s when this all took place.  Hearing aids need adjustments to keep up with the continued loss of hearing and after a while (4 years for mom) they can no longer be adjusted and you will need new hearing aids.

 Uuuggghhhh

For some awful reason which I cannot fathom, most  insurance companies do not cover hearing aids.   With all of the evidence about the quality of life this is completely unfair.  We did not have another $8000.00 (cost increased of course) .

She went without.

It was awful and I mean it, her hearing was worse than ever and she had lost one of the “not working so good” hearing aids so now she had only one and  that barely helped.  

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I had been trying to get moms insurance changed because I began to realize just how bad her insurance was.  This process of changing her insurance and trying to find someone to help was PAINSTAKINGLY LONG AND TEDIOUS.  

Elder Services was moms saving grace. Mine too.  I’ll tell you,  once you find the right people to help, life gets so much better.  Still took a long time but they told me what I needed for documentation and how to get it to the right people and what was going to happen.  Mom needed to be approved for the program Navi Care   afer she went through the Mass Health approval process.  To be approved for Navi Care insurance she basically had to prove that she had no assets, no hidden money, property  or stocks, etc.  She had to prove she was poor.  She doesn’t know she is considered financially  poor and I would never tell her.  She was approved, of course.  

The quality of moms life changed with this approval.  We had caseworkers and nurses calling to check on mom  and they came to the house and got her a walker, a bench for the tub,  physical therapy and any thing she could possibly need.   They sat with us to see what her needs were and then they made sure these needs were met.  

This is how we could afford her daycare and her new hearing aids!

Not top of the line hearing aids but they worked.  They even sent her home with batteries and wax guards.   I was so grateful, it made a world of difference her moms daily life.

I know when it is time to change the batteries, or when she isn’t wearing them.

“Mom, would you like a cup of tea with me?”

“What did you say about me having to pee?”

“Do you have your hearing aids in?”

She reaches up to touch her ear

“Oh I guess not?”

Or

“Do you have your hearing aids in?”

She reaches up to touch her ear

“Yes”

That is how I know it is time to change the battery.  Or when she isn’t laughing at Bob and I while we banter back and forth, because we are funny,  and she is usually amused. So when she isn’t laughing it is time to change her batteries

Sadly mom has lost a hearing aid, the right ear,  twice now, and they only replace it once, so she only has the one hearing aid now. her left.  It is still good though and she does hear much better with that one than without any,  but occasionally she will misunderstand what is said.  

Recently, I had a few friends over for an afternoon “tea”  (wine) and mom often times joins us for a while.  

 

This particular visit we were all sitting around the table snacking and talking about our new year’s resolution  diets, as we do every year. You too, right?

“On fridays we all meet at the gym and get weighed and workout together”

Carrie explained

“You get laid at the gym?”

We all burst out laughing and I knew she needed new batteries then for sure!

Mom may be considered financially poor but I hope she feels the riches in her life.

Dependent Independence

“Is there anything you’d like me to do?”

“Not right now, mom, thank you”

 I feel guilty about this conversation,  it takes place at least once a day, while I am making dinner.   There are times when I will find something for her to do.  I know  she needs to be included in everyday tasks, she needs to feel useful.  It is just that she is so limited as to what she can actually do these days.

I know I have mentioned this  before,  that mom was always very busy, what choice did she have in the 50’s  with five kids, and a husband,  right?  She was non stop, the house was always clean, the kids were mostly clean,  the laundry always done,  groceries always shopped, meals always ready,   and everyone was usually happy – all her doing.    We were all blindly dependent on mom, for everything.  For the most part I believe she was happy about it.

What a great feeling it is to be needed, not only needed but also able to provide for those needs, that’s rewarding.  However it can create dependence.

I will often give mom a task.  Here is the problem, there are times when it is  work to come up with a task for her.   She is weak and she is unsteady and she is slow.

“can you help me  husk the corn mom?”

“oh I suppose I can do that”

She is so weak  now that it is hard for her to actually get those husks off of the corn, but she plugs away, peeling one leaf at a time.  When I could have had all 8 ears peeled in the time it takes for her to peel one.  She is helping and contributing, that is important. She needs feel needed and useful.  Eventually I will help her.

I typically have my list of Saturday chores.

“Is there anything you’d like me to do?”

“can you swiffer the floors?”

her typical response

“I suppose I can do that”

Can she do it? No, she really cant do it easily at all.  Its an ordeal.   She is so unsteady now that she has to use her cane in one hand and swiffer in the other  then I feel guilty for doing  it.  I have to tell myself that its okay if its difficult, at least she is doing something useful.  Now I watch her to make sure she is doing okay with it.

Trying to give her a bit of independence is getting almost impossible.

As always timing is everything,  and if she doesn’t swiffer right away, she will simply not do it, I’m not sure if she thinks she already did it or just forgot about it altogether,   I silently question.  Then I swiffer the floors.

There are times when the conversation is a little different,

“is there anything you’d like  me to do?”

“sure, do you want to dust the living room?”

I believe my problem was in the asking

“no. I really don’t”

And she doesn’t.  So how do you respond to your mother when she asks what she can do, and  then she  picks and chooses what that will be.  I chuckle.  Then I dust.

For her to dust the living room requires such great effort.  For her to walk up the stairs, requires a great effort. Husking corn is a lot of effort.  Putting her coat on is an effort.

She has had a task here and there that I would just leave for her to do. She use to be able to stack the kindling when she was able to walk around the yard with more stability, but that has become too difficult as well.   I could easily just spray the grass that grows up between the bricks in the patio with vinegar and it would die and we would be done with it, but it is a great job for mom.    Every once in a while she will notice the grass growing up between the bricks…

“I guess I better stop slacking with my weed pulling”

She will sit in a chair and bend over and pull grass for a long time.  We always make sure to comment on how nice the patio looks .  She feels useful.

It was not that long ago, she would do all of these little things with ease,  cleaning the kitchen.  Helping with the wedding favors for Megan and Robs wedding.

tying wedding favors

 

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I pick out moms clothes every morning, I lay them out on her bed and put the clothes from the previous day in the laundry basket.  We don’t talk about it, I just do it.  I started doing this because she would wear the same clothes for as many days until I pick something else out.

6:15 in the morning, getting ready for work

“Debbie, are you busy?  Can you come help me for a minute?”

“of course”

“will you help me with these stupid socks, I don’t know why I cant get them on my feet.”

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again, 6:15 in the morning, getting ready for work

“Debbie, are you busy?  Can you come help me for a minute?”

“of course”

“will you help me with this stupid sweater, I don’t know why I cant get my arm in the right spot.”

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So often I feel sad for this conversation, but it takes place more frequently these days.  There are times when I will find an excuse to just go in and help her without her asking, I don’t want her to feel she has to ask, so I try to be available.  I don’t want her to feel useless.  We can have  a little morning chatter while we dress her.

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recently, 6:15 in the morning, getting ready for work

“Debbie, are you busy?  Can you come help me for a minute?”

“of course”

poor mom sitting on the edge of her bed unable to hook her bra, she looked beat,  no words were spoken until she was dressed.

We both know.  We shared a halfhearted grin.

(I said this earlier…..What a great feeling it is to be needed, not only needed but also able to provide for those needs, it’s rewarding.  It  creates dependence. She is very dependent, but it is not reward that I am feeling) 

lately each of our conversations are ending the same way……

“thank you dear, what would I do without you”

she sounds so tired

“your welcome mom and I’m glad we don’t need to worry about that”

==========================

 

…….  what will I do without her.

Merry Christmas

With 5 kids in our house growing up, Christmas was always an exciting event. It is one of those holidays that needs to evolve as families evolve.  We usually stayed home on Christmas morning and went to my aunt and uncles house for Christmas dinner.  There were times when Uncle Hap played Santa and came to the house.

 

Sometimes though Aunt Julia and Uncle Harry and Aunt Bea would come to our house, either way  it was always so much  fun and quite exciting, with the anticipation of Santa’s arrival.  Mom  listened and observed each of us so well  and “Santa” always brought exactly what we needed and wanted. Mom often talks about the year the kids all got up at 3 am and had everything opened before her and dad got up. The year of the toboggan was one of the best and as always a family gift.

 

That is mom and dad in the midst of all of this tobogganing fun.

We often got those kinds of gifts, family gifts, for us to enjoy together, best gifts ever really and I would say the closest thing to buying time.

Lots of years of lots of  food and lots of fun and lots of love.  

I would never have changed any moment of my childhood… until August 31,  1969.

That was the day that Mom suddenly lost Dad.

 Five kids lost their dad that day too and it was the worst day of all of our lives.    What mom lost was far different than what any of the rest of us experienced that day and beyond.  She never really expressed what she felt, there were moments of expressing her sadness but that was it.

“I just wish I had been able to have more time with him.”

This quote of hers will always stay with me – simple and heartfelt.

Hard for me to jump right back into the holiday talk but I’m going to.  After you lose someone you love , it seems that the first of everything after they are gone is the hardest to try to adjust to.  The first birthday, anniversary, Thanksgiving, the first Christmas, etc.

Well the first Christmas after Dad passed away I can not even begin to imagine what mom was going through and you know what, I don’t think that I thought about what she was going through either.  Bruce and Barbara wanted to have something special for a family gift (mom told me this , years later) so they got the pool table that year.  That is how we learned to play pool.  Things evolved, rapidly after that year, as they do, as families change.

Aunt Julia and Uncle Harry and Aunt Bea would still  join us  but that gap was evident,  a missing puzzle piece, a black hole.

The gatherings  got smaller each year as someone would move out and share the holidays with their significant others and  families. Eventually Aunt Julia and Uncle Harry moved to Florida and Aunt Bea passed away.   All of that is a normal evolution of the holidays for all families.  When we all had our own kids and we were scattered about  the country we did different things but always thought of each other and we all tried to find time to talk to  each other on Christmas eve or Christmas day.

Mom and I always spent  Christmas together wherever I was, I was the one that was always closest in mileage.   There were some inconsistent years for a while, say 20,  but whoever was around we would get together sharing food and exchanging gifts.  Some years we were a large group and some years a little smaller.

Gift giving evolved too, and just like most families we eventually decided to cut back on the  gift giving  and buy for only our own  kids and mom of course.

Our newer traditions also evolved;  Christmas eve we would have a big dinner at home joined by  Barbaras family,  then we would all go to church,  and then back to Barbara and Michael’s for dessert and gifts.   The gift giving evolution was really fun as the kids got older.  We tried it all, drew names, yankee swap, family gifts, my personal favorite, “if I could get you” gifts.   It was so much fun just being together and as we all know it really has never been  about the gifts.

Mom loves time with family, any and all of them/us.  For years at Christmas, mom would get everyone who lived close enough, a gift certificate to a local restaurant with the understanding that we would all go together.  That was her way of getting more of that time together.   That too has evolved.

How about what to get mom for a gift now.? Everyone has been a little creative, Bruce usually would send her a pretty floral arrangement and moms loves that.  One year Katie and Tim sent her a “cookie of the month” gift.  Mom and I have always done our stockings for each other, it’s been fun.  I get baffled now and then, I hate to waste money just for the sake of getting her a gift,  however  I always put panties in her stocking.

“oh and they are pretty too” .

I had gotten her panties with lace around the top.  Yes even at 89 she still loves to feel  pretty and the feeling of looking nice.  So it is the feeling and not necessarily the lace on the panties or even a gift for that matter.

She really only needs time, family gifts of time together,  that is what creates the feeling. The boys always call – she may not recollect any part of the conversation but she absolutely remembers that they call.

She can not crochet  a dishcloth this year, she wont be making peanut butter balls, she wont fall asleep making gravy this year,  and we wont be getting together at a restaurant this year, but she will happily spend time with you.  She will chat with you on the phone or she will sit and watch the little kids play or the bigger kids gather together and be goofy.  Although she doesn’t eat much at all, she loves to see the feast, and she always looks for the sweets. Baileys Irish Cream, we can not forget her Baileys.

Her gift to us,  is time.

Mom always just goes with the flow, she always has, and even though she has a tough time remembering what is going on, she remembers how she feels in situations.  The feeling she gets from being with and hearing from family is the best gift, and for her and dad it always had been too, it exudes from her face, her smile and her whole demeanor brightens.

We sat and colored Christmas pictures the other day.   I thought I should have been doing laundry or dusting or a thousand other household chores, but then I remembered the gift of time and  Moms quote.

“I just wish I had been able to have more time with him.”

How have I let time go by and how did I get so caught up in other things that I could neglect the time, our time.  That gift does not have to be on Christmas day or Christmas eve and it doesn’t need to be in the form of an actual gift.

 

 

Our time together is often quiet these days, but it is somehow quite comforting to have someone that you love  just be near.

“what can I get you for Christmas? ”

“oh geez, mom, I don’t know, I really don’t need anything,  how about we start a new tradition?’

………….. and we will continue to evolve.

 

 

Laughing

We have laughed so hard before at……..

oh a wide variety of our own mistakes, and blunders.  Maybe something was said, a story was told , a memory shared or one of us did something goofy.

Nobody does it better than Mom when it comes to laughing at oneself.

 She was often silly and game for anything.  She did not let the fact that others may think an action or comment wasn’t as funny as she did, stop her.

birthday song at cancuns

“dont take my picture”

back in the day

toilet paper brides – mom in the middle

Mom laughing at herself always causes me to laugh and then once two people start laughing (at anything really) it is hard to remember what the original trigger was that started the laughter.  Thats just fun.

Mom has  told us about an” album” that  Uncle Hap had,  with  various sounds of people laughing and when you listen to it you can not help but join in.  Mom, Dad, Aunt Jay and Uncle Hap would listen and laugh …. the kind of laughing that makes your eyes water and  your cheeks hurt.  Even as she tells the story of the times they listened to it,  she smiles and giggles and sometimes actually laughs out loud.   Thats fun too.

Did you ever see that scence in Mary Poppins where they are all  laughing and it causaes them to  float up to the ceiling, well laughing does raise you up.  There is a lot of research that says so .  I heard it was just as good as crying, releaseing the same hormones/endorphins.

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One of my all time favorite memories of mom laughing at herself was the day we took the kids on the paddle boats in the duck pond at the zoo.

Katie jumped in the boat.  Megan was old enough to paddle and wanted to paddle the boat with me. Mom had already started getting in the front seat.

“Ma’am you will need to sit in the back corner so it will be balanced.”

He said this while he was standing with one leg on the dock and one leg holding the paddle boat. (Haha)

By now Mom was already in the boat and decided to step through the middle of the seats to take her spot in the back.

She was in her mid 60’s and fairly agile. Keep in mind, these paddle boats are relatively small.

As she stepped between the bucket seats , Megan hopped in the front. Mom had hit her foot on, I’m not sure what , but we figured it was probably the back of the seat.

She lost her balance and went toppling , it was almost a slow motion scene really but in a flash there was a splash and she was hanging onto the paddle boat half in (one arm and one leg) the boat and the other half (the other arm and leg) in the water.

Immediately I jumped in to the paddle boat to help her

” are you okay Mom,”

“oh ya I’m fine I just don’t want to get any more of me in this duck poop water. “. So realizing she was ok I was relieved and she started to giggle, so ….. I started to giggle.

The young man holding the paddle boat with his feet was not giggling nor was he helping, too hard for him to help when he was trying to hold the paddle boat to the dock. That is really a bit funny too.

Some people behind us waiting their turn in the boats we laughing with us and others were not.

We were laughing and trying to get her back on the boat and it really didn’t take long at all but it seemed like a a very long time as we were going through it but we laughed the whole time. It was very funny.

—————————————————————————–

Another time when Barbara and I were picking Mom up at the airport this was years ago, I think she was visiting Rob and family in Texas . As she was walking toward Barbara and I, she smiled and she had something red all over her teeth, I mean it was vivid red and a lot of it     .. so we were laughing,  literally laughing at her,  and she kept smiling at us. She thought she was eating a slice of apple when really it was the red wax around a piece of Gouda cheese. “I thought that apple tasted bad ” So funny.

—————————————————————————————

I envy people who can make mistakes or do or say something stupid and still laugh about it.  The ability to laugh at oneself, is truly a gift. Mom is better at this than anyone I know and thank goodness my kids have learned that from her.

The dogs ran by her and knocked her down. What does she do, she laughs

—————————————————————————————————————————————–

tensing up and letting go relaxation technique

If I wear a hat to the store noone will see my curlers.

mom

She does still laugh at herself but not like she use to.  She may giggle now and then about something she said or thought but somethimes she gets upset and often times  she will make a comment;

“thats so stupid”

 She feels differntly about her mistakes now and most often they are not  very funny to her.   She still laughs and giggles and even makes funny comments but it is the laughing at herself that is gone.  

 

I’m going to take over  and we are going to laugh at me and my blunders, mistakes and silliness now.

 

 

 

Being Thankful

Every year as far back as I can remember mom would make a “ carrot pudding “ for Thanksgiving and/or Christmas.  I didn’t always like it but over the years I have learned to love it.  This is also true for most of the family and now everyone expects it, with, of course  the hard sauce.  We can make it the weekend before thanksgiving because it lasts a while.

Mom can’t follow a recipe anymore so “I’ll make it” with her.

This required a trip to the  store (one of the ingredients is spiced rum and we ran out of it when I made mom’s birthday cake (absolutely delicious rum cake) So we went to do a few errands which now included picking up the rum.

We bought  the spiced rum and the non spiced rum, just to have on hand for the season.  Then I saw one of moms favorites, Baileys Irish Cream, (the original).

“hey mom, would you like some Baileys for the season?”

“ohhhhhh, Yes, I could stand that?”

I knew she would enjoy it.

So now I have 3 bottles of alcohol in a cart pulling it behind me  and pushing mom in her wheelchair.  At the register, I paid and now I have the three bottles in one bag.

“ Want me to carry that?”
“sure”  and reluctantly I placed the bag on moms lap, under the parkinson’s shaking hands.

We steam the pudding for a couple hours once put together, so we need a can, like a three pound coffee can or some reasonable facsimile.  This was a bit of an ordeal but I used the tin that moms cookies of the month club cookies came in.  Perfect, even has a cover.

We have everything we need now so we can get started.  I assign a task to Mom and then I need to watch her discreetly to be sure she does it correctly.

This is her thing.

I set her up at the table with a few items to measure out and have her  add them to the bowl, she moves quite slowly these days so it will take a while and I can get a lot done at the counter. She certainly can’t manage a knife now so
I’ll chop and she will measure.

making carrot pudding 2017

making carrot pudding 2017



We chatted a bit about the carrot pudding and who likes it, we talked about making the hard sauce and when.  We talked about Bruce & Karen making their own version of carrot pudding .

We worked as we chatted and it was nice.



Done  and steaming in the pot!
We will make the hard sauce on Wednesday.

That was a lot for mom, the concentrating is exhausting for her these days, so she sat down in her chair in the living room and promptly fell asleep.

She slept.

I took the pudding out when it was done and let it cool.
————————————————
Later that evening

“Mom would you like a glass of your Baileys “

“ do we have some?”

“yes we do, we picked it up at the same time we got the rum for the carrot pudding”

“ then of course I will”
———————-
“did I make the carrot pudding already?”.

“you sure did, it’s all done”

that conversation took place several more times before Thanksgiving
——————-
Wednesday 

we made hard sauce, this is simple.

I combined all of  the ingredients  but the recipe did not say how much rum to add

“mom how much rum do I add”

“oh , I don’t ,  know just pour some in  , maybe a quarter  cup, I usually go by taste”

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Thanksgiving day

“ okay let’s go”

Katie and Tim hosted thanksgiving this year and I was excited.  Mom was a little confused about going somewhere as we have always hosted and she was concerned about the dogs being left alone for “so long”.  I assured her all was good.

Dinner was amazing!  every bite.
It was different  ( by different , I mean lively)  now because of the  4 young kids,  and we forgot to do our traditional around the table “what are you thankful for” sharing. That is one of my favorite parts.  It was still so much fun to be part of this bunch.

We were all so full, that’s the theme of everyone’s thanksgiving,isn’t it.

A couple hours later the desserts were set out, there was so much to choose from and the hot chocolate was just heavenly.  We were so full again  and there was so many desserts that we didn’t bother warming up the carrot pudding.
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The day after.

In the afternoon, Mom and I finally had our warmed carrot pudding with melting hard sauce with a cup of tea.  It was as good as always.

“I think it’s only you, me and Barbara who like it anyway”

“Ohh, I don’t think so, I know Ryan likes it, Megan too and probably Jill.”
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I know this post is more about me than mom, but I wanted to share (since we missed  it on thanksgiving) what I am thankful for.

Of course, I am thankful for my growing family ( there is nothing more precious) and that we continue with most traditions that I grew up with.


Most importantly this year, I am thankful for the carrot pudding, not the carrot pudding itself, per se, but the fact that the carrot pudding created time for mom and I to stop and share with each other the shopping, the Baileys Irish Cream, the making, the baking, the eating and most importantly, simply the time.


Don’t forget to make carrot pudding! 

My errands take a little longer

“Mom, I’m leaving, I won’t be long, Bob is downstairs in the office.”  

I was bringing Moses (dog) to the vet for a recheck and leaving  Rookie (other dog) at home.

I got ready to go and woke napping mom to let her know I was leaving and that Bob was downstairs in the office if she needed anything.

 She came awake a bit  and said

“oh I might as well go with you”, and she started to get up.

“ I wish you would stay here Mom, it will be easier”,  

she sat back with look on her face that would break your heart.

“well I didn’t think it was that big of a deal,  never mind then”.  

Okay so now I feel like a schmuck….

“oh I’m sorry mom, come on then, come with me,  it really isn’t a big deal at all”.  

“Can we take Rookie with us?  I’ll wait in the car with her”

“No mom, you are not waiting in the car”

 

All of my my errands take a little longer, require a little more planning and can be a little more stressful.  

 

How big a deal is it to take mom with me to do any errands?  

Well she needs at least her cane and my arm to walk at all and that is if we can park close enough  (we do use her handicapped  parking permit, only helpful if space is available).

She absolutely adores the dogs, however the dogs do not understand how not to always  be in the way, so of course  I  worry that one day one of them will knock her over, again.  Even while I’m holding on to her. 

And mom doesn’t understand that she can’t maneuver the way she use to and she tries to help with the dogs, she even thinks she can hold their leashes and walk them in to the vet office.  (she had 5 kids, she did amazing things back in her prime)  The car door is too heavy for her to open (she is very weak) so, I  try to be  sure that I either take the dog out first and risk that she is not  trying to get out at the same time  with the possibility of the door slamming back on her or I help her out first and  hope the dog doesn’t jump over her to try to get out quicker. It happens fast and it does keep me on my toes.

As I’ve mentioned before, over the years incontinence has become an issue for mom, (our turn in coming) so we need to be prepared for that.  ( that is more than just proximity to a bathroom, often times it means a change of clothes) So as long as I cover those things and I do make sure there is a bathroom close by and that she has tissues for her forever running nose, we can go.

It is a slow trip with a little added stress but in the long run how big a deal is it to just bring her with me , I can slow down, heck I should slow down.  

So she came with me to the vet.

It wasn’t that bad.  

And then we have “adventures in the grocery store”   

 I just need to pick up a few things, HA.

We have her parking permit because it is too far for her  to walk and she is such a wobbly walker these days even with her cane and my arm.  People do stop for us to cross the lane in front of the store from the  parking lot, so that’s helpful , even more than when I was pregnant and carrying a toddler. (back then I could run in those conditions)

Then we need the right cart to be available; (only one grocery store has it) the cart is a wheelchair with a basket in the back, one in the front that fold down in front of the passenger to lock them in and one underneath in the back. It drives like the carts you use with kids that have the car in front, they are big and bulky and hard to take corners in.

  

She use  to use the motorized carts when walking for a long time was first becoming a problem but she can no longer manage those. ( became a little dangerous for all )

If the wheelchair cart is not available ( Market 32 only has 1) I use her wheelchair and drag a carriage or basket behind me.  That is a pain in the neck. 

On a perfect trip, we would park close, the right carriage is available, (they definitely need to have these everywhere) she has tissues for her nose and I can push that cart relatively well now, so we can zip up and down the aisles…….. until …….

“you know what we haven’t had in a long time?”  

“What mom”?

“Onion dip and chips”      (we are in that aisle)

So we pick that out,  too many choices are difficult for her, so I hold up a couple different brands and flavors so she can choose.

“Okay, if you see anything else you want just let me know”

 (one day in the vegetable section she wanted butternut squash, that was random, just squash.  I try to encourage her to eat so I buy her anything she asks for.)

Finish shopping, check out “fast”…….

Everything in reverse now, put the groceries in the car, get mom in the car, then the wheelchair in the car, unless it is the stores cart, then I always return it to the store because if someone else is in the same situation as I am they will want it available.  

So we went grocery shopping together like we have done so many times before, just different.

It wasn’t bad.

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Planned trips are different, If she has a doctor’s appointment, then I can make it an event.  Last year about this time, well early December,  mom had her hearing check, so I decided to  tour the beautifully decorated St. Vincent’s, where her appointment was and then take her to lunch.   Having the plan , I made it  an event.

 We donned our gay apparel and off we went.   

We received and gave  a lot of smiles and “Merry Christmas’s as we walked/rolled  around in our Santa hats.  We both enjoyed it.  

Her hearing appointment was such a small part of our day.

After her appointment we went to a quaint little restaurant for lunch (her lunch & dinner ), we had a pretty Christmas “beverage” (she occasionally still likes to partake) We chatted and had a few laughs.  It wasn’t bad at all.  We enjoyed it.

Often times I do  complain, not to Mom, obviously, but, to others and to myself.  I get annoyed sometimes that errands take so long.   I have to admit I can get a little resentful on occasion too.  There are times when I just stayed home because I didn’t have the energy to deal with what at that particular moment I think of as an ordeal.  There are days when I really do just want to run to the grocery store and grab something quick and come home to relax.  There are days I don’t want to go through the ordeal of getting the wheelchair out of the car , or checking for the things she would need.

The day will come I know ………where I won’t have to.   

So for now, I’ll take a little longer to do my errands , and I’ll plan to keep the senior necessities in the car and I will get out our santa hats and smile at others and say “Merry Christmas” because you know why……..

This really isn’t bad at all.

 

Planned Spontaneity and Traveling

 

“It is so nice out , let’s go for a ride,  just throw our toothbrushes in a bag”

She was spontaneous like that, it was so much fun.  

 When my girls were old enough to ask where are we going, mom and I would  simply say

“we are going on an adventure”

They loved our adventures  as much as Mom and I did.  Still do.

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We were all young ( including Mom) when my dad died, (another post for sure) and with 5 kids mom did not have much free time and then when all of us had moved out and started our adult  lives she was left alone. First time in her life she was alone.

Mom had been alone for a long time when the girls and I came to live with her.  I think at times it was joyous for her to have us there, we kept her busy, we had each other to do things with and we did laugh a lot.

She did some traveling before the girls and I came.  Texas (to visit Rob and family), Florida ( Scot and family), Virginia (to help Bruce when he broke his face), Colorado (with Barbara, to visit Bruce and I) and we did some trips together too, Kansas, Montana, Florida again.  She always enjoyed the travel and adventure.

The 4 of us

 

   ————————————————————-

When my girls were young I had to bring more than a toothbrush but we did pack light  – your basic diaper bag paraphernalia.  

Off we would go.

 There were times where we might end up at Weirs Beach New Hampshire, that was always an easy trip.  Sometimes we went further north,The Kancamagus Highway,   The Flume,  and sometimes we would head for the coast, York Beach usually, and on a rare occasion we fit in both.  Shorter trips we went to the Mohawk Trail and our biggest trip was to Prince Edward Island. (that took planning)

Mom at Weirs Beach

Franconia Notch

P.E.I.

 

As the girls got older it  got easier and  we’d venture  a  little further for a little  longer.  We stopped where Mom and I wanted along whatever the chosen route was.

Mostly we went without a plan, no routine, no phone ( we did not have  cell phones back then) , and  didn’t let anyone know we were off.

Always a different adventure and always fun. We were happy.

For years, much of what we did was not planned. Well of course the longer trips were planned but our  day trips were mostly spur of the moment.

A visit to Aunt Jay’s (mom’s sister)  was one of our favorite short trips. She was always so happy to have us or at least she made us feel that way.  We would visit the Maleys regularly.  When my kids got older and it was just mom and I we occasionally would visit her old friends , the D’Agastinos.  Scot invited mom every year to come visit in the winter and often she would go for a week or so, she did that alone since I was working.

 There are travel issues now with mom that require more planning, but don’t  think for one minute we can’t  still get out on some local “adventures” once in a while.

I’m not sure at what point in time this changed.  Like everything else, it was an evolution, it was gradual though.

 I do remember the moment I realized her traveling days would no longer be the same.   Okay I’ll tell you,

I was working, my girls were on their own and mom was going to visit Scot in Florida, it was February and a good time.  So I made the arrangements for her and got her ready.  The morning of her flight, we left 2 and a half hours before she needed to be there……. there was so much traffic…..  (this is one reason I am not a city girl)  I tried to not let on to mom that we were barely going to make it…  We got to the airport in time for Bob to  stop in front of the Jet Blue airline terminal and I dragged mom out of the car grabbed her luggage and ran (oh God she can’t run) inside to check her in.  Mom had no idea why we were rushing and I told her we were very late but she truly did not understand that her plane was probably boarding at that point.

The women at the  desk told me it was too late, that the plane had already boarded ,the door to the plane is already closed.

I said ” “no no no , you don’t  understand she has to go”  and I am sure I had a panicked look on my face.

I don’t like to be late, I am never late  for anything and neither is mom, so I was a little embarrassed too.

I had moms boarding pass in my hand and this jet blue worker (I was  not even sure of her title) however, this woman, I’ll  remember her kindness forever.

She saw moms itinerary and the fact that she required a wheelchair and an escort ( we make those arrangements because her memory was really failing her and she could not do this trip without the added assistance) she grabbed moms bag and called for a wheelchair while she made some communication with her walkie-talkie or whatever you call it , and she scurried off with mom.  I barely said good-bye to her and I am sure she was confused and I was a mess thinking about it.

Off she went.

I called Scot and told him this story and I was so upset to have left mom in that state of chaos and confusion.  Scot was very sweet and reassuring that she would be fine and he called as soon as he had her.  He asked her about the chaotic start to her day and she had completely forgotten.  That is the scary part.  Ugghh, too stressful.

The closest match to that feeling was the first time Megan got on a school bus as a kindergartener.

That was moms last trip alone.

 

There is not much spontaneity with Mom and I anymore. But I’m trying, I decided that  this version of our traveling life is what I call “planned spontaneity”  (oxymoron?  I think not)

For mom it is still spontaneous ,( even if I have told her, she forgets) and for me it is a lot of planning.

 

We take short, easy  trips now,

(this still requires more planning than I would have thought, we need to be sure there are bathrooms close by, we need to pack  incontinence  pads, tissues, a change of clothes, her cane, the wheelchair, papertowels (don’t ask) and her  handicapped parking pass.  Then she also insists on bringing her bag with her crocheting, she hasn’t  been able to crochet in over a year)

our easy trips consist of small adventures, the Newport Cliff Walk, Sleepy Hollow Cemetery (this is where my dad and much of my family are) and of course  the Old North Bridge.  Mom was  born and raised in Concord so it is familiar territory for her and the familiarity comforts her.

Barbara and I have taken her on shorter trips too, places like the  Wayside Inn, and one day we even stopped to see our cousin, Bob.  They both enjoyed the visit and shared pictures and memories.

mom and Bob

Old North Bridge

cemetery

cliff walk Newport

If we are going for an overnight I have to stay one step ahead of mom,  she will check and recheck and take things in and out of a bag….. forget she took it out or put it in   and If I don’t see her doing this we will be without something or have too much of another thing.

I try to pack her up and put her bags in the car before she has a chance to open it up again.  

“Okay Mom are we ready?”

..and I check again for  her medicine, pads, extra clothes, hearing aides with extra batteries, tissues, extra cane, handicapped parking pass,  wheelchair  in  car.

Finally, off we go.

So our “planned spontaneity” does require a little preparation and  a “senior diaper bag” with your basic  paraphernalia ( again, full circle)

Recently, while trying to make a plan for a short trip,  she told me that she is happy to stay home, “I’m getting old” she  said, with a well-earned groan.

  So we walk to the backyard, often.  We sit and chat, and reminisce and laugh. 

mom and I outback on the bench

 Still having our adventures, right here, in our own backyard.

Still having happy moments.

 

Eating and Weight Loss

I am moms legal guardian and health care proxy so I go with her to her doctor appointments.  We have the same doctor , and the same nurse has been there for as long as we have been going to this doctor.

“Okay Margaret, step up on the scale, be careful, I’ll hold your arm,

Okay , looks like 127” 

“I haven’t been 127 lbs since 5th grade” mom said chuckling

I asked the Dr. about moms weight loss, I was starting to get quite concerned. Mom has lost 25 pounds in a year and a half , unintentionally.

When they say you shrink when you get older they mean it in height as well as weight.  Mom’s height is hard to tell these days because she can’t really stand up straight. She is definitely shorter now that she ever was.

However, back in the day, Mom stood at an elegant 5’4” , and a solid 150-165 pounds- she looked great and healthy…. she was and happy too.  Impressive , after 5 kids, right!

Bruce, the oldest,  must have been taking the photo

As she aged, like all of us,  she grew a little shorter and little wider.  Still happy though.

Four generation photo Mom, Bruce, Stephanie, Nathan & Lucas

It was like everything else, a very slow process; her eating less and losing weight, it was slow enough that I hardly noticed at first that she was even  losing weight.

Before she started attending her adult  day care program, mom was home alone for lunch.  I was at work.    I began to  notice  that she wasn’t eating anything for lunch and sometimes for breakfast.  I would ask what she ate and sometimes she would say  “I must have had something,  I’m not hungry”. “You don’t have to worry about me”,  “there is nothing wrong with my appetite”.  “When did you ever know me to go without food?”

 I checked, no food was gone, no dishes we used.  

My mom always loved food and loved to eat, she particularly  had/has a sweet tooth.

Never picky.

 So for her to be not eating and  to not realize she wasn’t eating was obviously  a real problem.  

I started making her lunches and leaving it in the fridge, telling her it was there.  I wrote notes for her to tell her   what it was and how to heat it if necessary.

 (she use to give me similar directions for dinner, when she had to go back to work and I was home from school before she got home from work, another post for sure )

 For her breakfast I would put a bowl, a spoon, and a box of cereal in her spot at the table. Sometimes she ate and sometimes she didn’t.  

After about a 6 months  she wasn’t eating anything for her lunch. She told me that she just wasn’t t hungry or that she didn’t know I had made it for her. (the memory loss was affecting  not only her safety,( earlier post), but also her health)

I had to figure something out.  Sometimes  I gave her the ensure plus shakes for breakfast.  The very helpful people  at the senior center/ council on aging in town, suggested I try Meals on Wheels.  Mom was so annoyed with me for setting up the meals on wheels  for her.  (of course she was upset, such an independent woman starting to realize how dependent she was becoming, but I had no other choice )

Meals on Wheels program  did serve a dual purpose also.  I worried about her being at home alone but with the Meals on Wheels deliveries,  someone would be stopping by at 11:30 everyday….. and bring prepared food. 

She had to eat and I was trying to find a solution.

I would often come home to find the whole lunch in the fridge, untouched, uneaten.

She sees the Dr. every 3  to 4 months now. Basically mom is  a healthy woman, however Dr. M  does keep close tabs on her, simply because she is in her 90th year.

“Okay Margaret, step up on the scale, be careful, I’ll hold your arm”.   

“Looks like 123”.

“I haven’t been 123 lbs since 5th grade”, she said with that familiar chuckle

My jaw dropped.  She’s lost another 4 pounds.  

Her Dr. did tell me that her cognitive state (dementia) would eventually affect her eating and/or her desire to eat or even the recognition that she was hungry.  This is something I never knew could be a topic of concern.  It is. A serious one.

Everything had to change……

She attends the adult day health care program now and they give her breakfast and lunch.  So even if she doesn’t eat a lot she has it in front of her and she will pick at it.  When we are at home I put her meals in front of her and simply tell her that her breakfast is ready, her lunch is ready, dinner is ready – we always eat together, I think that helps.  I make sure she gets something to eat.   

I make sure and keep cookies or sweets in the cupboard because inevitably when she is “full” from her dinner she always seems to have room for her sweets.

Now 115 pounds, probably 5 feet tall,  she can eat whatever she wants whenever she wants  (wouldn’t that be nice?).  Sometimes we even have an ice cream sundae for dinner!  

…and by moments she is happy.  

Memories, Memory & Remembering

When you first start to realize it’s really  happening you try NOT to make a big deal of it,

“She forgets?, so what, we all do” or “she’s just tired”  or “she is bound to forget some things , she’s getting old” and my favorite “ oh please, she has forgotten more than you will ever know”.  

 

 When do we need to open our eyes and realize that it has become or will soon become a problem with all the forgetting?

 I don’t think there is a right answer. 

Each individual’s memory behaves quite differently.  

What is the solution? I don’t believe there is one or any real solution as of yet.

…. but safety should play a role.

 

She started forgetting names, dates, events, how to balance her checkbook, forgot PIN numbers ( don’t we all) could not figure out crochet patterns anymore (she always crochet), and it got progressively worse from there.  She started forgetting where she was going, how to drive to a spot she had been going to for years, she forgot the kettle was on, forgot to eat,  and how to use the can opener.

Now her safety was compromised.  

I would try to help and I would explain things a few times and a few more times  and instead of things getting better they were getting progressively worse.  I always encouraged her to write things down or make a list.  Often times she would get angry  and angry at me.  

That is how I noticed her frustrations but after a while ( a year or more) she just seemed confused and a little depressed.

Her doctor finally said to me,

” the real problem starts when she does not realize that she is forgetting”

……. uggghhh……

we are way past that.

 This is a very sad realization  for those around her, since she doesn’t realize how bad it has become.  

I kept trying to figure out why some things she remembered and some things she would forget.  The biggest lesson I have learned and numerous people ( doctors, nurses, support groups, articles) have told me this “DO NOT try to figure it out” .  That took me years to learn and to accept.  I don’t want her to forget me, ever.  I know, quite selfish of me.  I don’t though, I can’t help thinking that what her and I have shared I can’t share with anyone else and the memory then becomes mine alone.  

I take out pictures old and new

and she looks and we chat about them.

There are some differences with all elderly people diagnosed with Alzheimer’s and early onset  Alzheimer’s  or dementia.

Is one better than another?

I am sure I have not lived through the worst, Mom knows who we all are, she knows where we are, mostly.  When I say “we” I mean her children and grandchildren, great grandchildren and most nieces and nephews  and there are a lot.  She has survived my dad,  her three siblings and their spouses, my dads siblings and spouses, and most friends.

 

 I have three brothers, my youngest brother Scott, lives in Florida with his wife.  Out of the three brothers Scot calls most regularly, at least once or twice a week and if he doesn’t call Mom will say “well we haven’t heard from Scott in a while”.  How does that stick i her head and how does she know how long it’s been since he has called. So many  other situations she doesn’t recall time.  My guess, is routine.   

When Megan’s husband is away on business Mom knows and asks everyday if he is home yet, once he is home she stops asking.  How does she remember that and forget how to crochet a basic dishcloth? That was routine for her, she’s made hundreds of them.

 

Her long term memory is great, well no,  not really great, but it is good,  and she will often share stories when something sparks a memory.  I always  loved to hear those stories;

When she was little living on the farm and her family  would invite the neighbor family, the Manters to come for dinner and dinner,  was platters of corn on the cob. Her memory of that time is sweet, obviously is was enjoyed by all of them.

———–

She remembers running down to the train tracks to watch the train go by with men returning from WWII.  They waved to them and welcomed them all home.

———-

That darn Bobby Bumford use to “pick on” her so she would walk way out of her way to avoid going anywhere near his house.  

———-

The first house mom and dad bought in Acton, it was a foundation capped over and dad was going to build the house , which he did,  many stories come from that time.  Just one I have to share right now;  dad had hired some guy with a backhoe to move some dirt and rocks  in the yard and Mom wanted this very large rock placed in the yard so she could make a rock garden.  So she had the backhoe driver going all over the place try to find the best spot until daddy finally said “ will you make up your mind, we are paying this guy by the hour”!  

———-

And if you ask her about those times she will tell you and tell you in detail too.

But her short term memory is  just so bad.

My newest grandchild was  born a little over  two months ago.  When I got the call that Megan was in labor I went to Rob and Megan’s  house to watch their first child , Paxton, while they went to the hospital.  After baby  Remy arrived, I went home and picked up mom to bring her to the hospital as we had done with all of my other grandchildren.  

For the last two months every time she would hear us talk about Remy or when she saw Megan holding a baby, Mom would say, “how come I didn’t know about this baby”  “when was she born?”, why didn’t someone tell me”?  

I finally set Remy’s  birth announcement  in front of moms spot  at the table so she can see it every day, and I do believe it has made a difference – she knows Remy is here and where she belongs.  She will pick up the announcement photo  and say “she looks just like Paxton”.  

So although mom’s memories are jumbled  and she can’t remember from one second to the next , routine and repetition will get some things to stay in her memory a little longer.

But only sometimes.  

My memories of her strength and humor and devotion are what  help me to help her get through our days.  

Transitions (3)

Go back thirty-ish  years ago (Mom was 59-ish)  at our favorite vacation spot.  Now when I say vacation, I am not talking about anything fancy but for a few days each summer, Mom , me and my kids would go to Short Sands Beach in York Maine.  

This particular spot contains some of the best memories for all of us.  

Anyway on this particular trip was the beginning of Moms issues with her knees. Which led to issues with her back which led to hip issues.   Nothing to serious, just aggravations.

Here’s why; 

The waves at short sands beach are big and the water is cold.  Mom  held Megan (3 years)  (she would cling like a monkey)and I held Katie (18 months), we were in the water about to our knees.  

The kids loved it.  Mom and I were chatting and didn’t notice the big wave ( I’m sure this has happened to everyone) and that wave slapped us hard, so hard it knocked Mom and Megan down.  

All of a sudden I saw mom’s hat floating and Megan still clinging to Mom pretty much horizontal in the water, so I began my attempt to help them up. So just picture the few seconds that this all took place and now mom stumbling trying to stand up and me grabbing her arm to assist in the effort.  You have to know this was not easy, two people holding little kids on the ocean’s edge with waves still coming in, Megan still clinging, and now we were starting to giggle.  Giggling makes you weak.   Finally (30-45 seconds) everyone was upright and safe.  Still laughing  we started back to the blanket and Mom was limping a little.

Mom NEVER complains.

Still.

When I asked her if she was okay she said “oh yeah,  I’m fine I just need to sit for a minute”.  

We sat.

We replayed the scene a few times and laughed each time we pictured it happening.  So much fun and a great memory!

Mom is actually very lucky with her health, she has most her her original parts, some work better than others but her  knee was never the same, but we always get where we need to go.

The transition  from walking independently, to walking with a cane, to (should be) walking with a walker, (stubbornness  prevails) to shuffling, to shuffling slower, to needs a wheelchair for any distance, is a long and gradual one.  

We still love going to York Beach, all of us.

Routines & Transitions

Creating routine and how long does a new routine take for someone with dementia to adjust?

 Thank goodness for the adult day care option.

Don’t think for one minute it was an easy decision or an easy process to get her there

Nothing about it was simple.

The value however is so worth every bit of the effort.

 

 

I am Moms health care proxy and her power of attorney (another post for sure).  This came about when she first realized (this was a sad realization) she was getting confused and didn’t understand “all the new ways”.

Quite a few years ago I started noticing Mom doing less and less around the house during the day, not that I expected her to do chores or anything, but she had always done so much.

Heck back in the day mom could, tear through a room, ceilings,  walls,  floors, turn the mattress,  wash sheets and curtains  (with a ringer machine) and dry on the line, wash the window – she would even beat the pillows and have it all back together in time to make  dinner and have it on the table at dinner time.

Sadly, it was now at the point where she was not doing anything all day.  We all know that being alone all day and not having or doing anything cannot be good for you.

Barbara had moms car at her house because we figured it was best to keep the car out of moms sight so she wouldn’t be upset about not driving.  Barbara had assured mom she could bring her wherever she wanted to go if I was not around.

So after some prodding ,  mom decided she would like to attend the Wednesday morning meetings at church,  they only met twice a month but it was a good start and Barbara would take her.  They did this off and on for about a year, mom would say “Barbara likes it so I will go”.

Mom has to be pushed a little and really so does Barbara, so when one of them said they didn’t feel up to going the other agreed and they would not go.  Maybe too hot, or too cold, or too tired, or didn’t feel like it.

I finally talked mom into going to the town senior center (she thought it was for old people, duh) because they had a Yahtzee group and she always liked that.  Socially I thought it was important.  Barbara took her a few times because it was during the day and I was at work.   Again because they both needed a push to create this routine, it didn’t always work out.  Mom would often say she wasn’t up to going, and where I would push her to go Barbara would not.  Barbara once told me I should let mom do what she wants.  Barbara felt bad, and felt I was pushing mom too much.  I on the other hand wanted mom to be around people her own age and do the things that people her age were doing.

So I made arrangements for the senior center bus to pick mom up,  figuring she couldn’t say no to them, (like she did with Barbara)  if they showed up at the door.    I was wrong.   Sometimes she would forget the bus was coming, even after I reminded her in the morning before I left for work.  Other times she just said she didn’t want to go.

She was forgetting so much and doing so little.   She ruined 2 tea kettles.  She fell down  out back one day when no one was home.  Tried  to bring in firewood. Tried to start a fire in the wood-stove.   She didn’t eat the lunches I left for her or anything else.  She couldn’t lock the door when she did leave.  She forgot phone numbers and didn’t know how to reach me during the day.  She wore the same clothes every day.  She started having difficulty getting to the bathroom on time.

Time for me to realize that she can no longer be alone.

Such difficult decisions.

After months of insurance dealings, and meetings and interviews and more frustrations than you can imagine  (yet another post) we got the ok for mom to attend adult day care.

Barbara and I  went to visit a few adult day care facilities, at which point   I questioned if mom even  belonged there, after all it was for such old people who were so dependent on others for everything, and they looked confused and…….. I finally heard myself and realized it was the right place for mom.

These transitions and  realizations take time for everyone to accept.

I asked around and the day care facility  I liked had such great reviews from a friend who had her mother there a couple years ago before she passed away.

After a few  very lengthy discussions and convincing mom she had to go, she started going 2-3 days a week through the summer.

Mom must have been scared and  she is a little shy and this was all new to her.

 That was almost 2 years ago.  She now attends day care 5 days.   Now it is routine and mom looks forward to going.  She complains about some other people that go and about one of the bus drivers.  She loves the food.  The kids from the tech school come to visit.  A few different dogs visits, she loves that.  The preschoolers march through on Halloween. She  participates in everything even  chair yoga and once in a while she even gets to play Yahtzee.  She will often bring home a craft she made or a prize she won playing bingo. We have so much we can chat about at the end of the day. She has a routine and someplace she needs to be.  She even has a task,, she wraps silverware for lunches.  When she gets off the bus, she is tired because she had a full day.  She looks forward to the weekends now.

  We have created a  safe and happy routine.

 

 

Morning Routine

I’m sitting here having my coffee in the morning quiet and the dim light. I love this peaceful moment and over the years I’ve learned much about appreciating these moments.

After a few minutes if Mom doesn’t rise on her own , I’ll go in her room with the dogs and the small one, Rookie, will jump up on moms bed and that always works.

I’ll talk more about pets at another time, but I’ll just say that Mom is more attached to these two dogs than any animal we have ever had.    Just look, they are holding hands!

Anyway she will get up and shuffle to the bathroom. That is when I go in her room and get her clothes out. (She will wear the same thing everyday if I didn’t do this)

She moves slowly.  That is why I use the term shuffle  (definitely another post)

I get dressed for work, then get her medicine and a glass of water and put it on the table in her spot. By now she is out of the bathroom so I check if she needs help, mostly socks are an issue these days. On occasion it’s her bra that gives her the biggest challenge. Often times we may giggle about the whole getting dressed process. Our mornings are never rushed , so it is pleasant.

Once dressed, including hearing aides (lots to talk about there) she makes one more stop in the bathroom and blows her nose and pats down her hair.

Then she will shuffle to the table for her waiting meds and coffee.

She prepares her bags( another story) and sips her coffee. Finally she walks over to her chair to watch for her day care bus. If Bob is available to wait for the bus then I am off to work , I give her a kiss good-bye and say have a good day as does she.

I think of her during the day, hoping she is happy.

Everyday.