It Hangs on the Fridge and always hangs on My Heart

“okay, let me call an ambulance,  sit down for a minute”

“Lets just do it real fast and get it over with”

“fine”

“I want it to be what you want though mom, that’s why we have to do this”

“I know, okay”

 

That was three years ago.

 

Due to the progression of moms dementia, it had been suggested to us that  we should make sure to have a few ” things in order”.   In other words prep for death.  There is no pleasant way to talk about or prepare for this without causing some emotional strain, for all involved.   For the person that is filling it out as well as for the family.

‘We have done a lot of things, this can’t be the worst thing mom”

“well it’s not your life we are talking about”

uggh, I thought… just  stay positive

“okay, I guess, you’re right”

There really isn’t an easy way to do this, I mean, have you read the form, it sounds so final.  Okay so I know that is the point, but when the discussion  revolves around someone you love, it takes on a completely different feel.

We did it, we filled it out,  and we talked about the different situations that might occur or that could occur and really there is no way of knowing how one will  die, or what will occur to lead up to that persons death.

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MEDICAL ORDERS FOR LIFE SUSTAINING TREATMENT

DNR – DO NOT RESUSCITATE

DNI – DO NOT INTUBATE

DNH – DO NOT TRANSFER TO HOSPITAL  (unless needed for comfort)   (WHAT?!!)


 

It gets complicated and the  DN’s can overlap

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I heard mom  from my room, she was up and moving around and it was very early, I jumped up out of bed, I always do, I have to check on her.

“mom, are you ok?”

“something is wrong, I can’t breathe”

“okay, let me call an ambulance,  sit down for a minute”

I got her seated and picked up the house phone , which I rarely use and for some stupid reason I fumbled with dialing (pushing buttons, actually) 911.

I dialed 911

“no thats not right, I need to push the green button”

I did and dialed agai’n

“hello what is your emergency”

” I need an ambulance, my 89 year old mom can’t breathe”

“did you just call and hang up?”

“oh God, I’m sorry, yes that was me”

Mom also has the medical alert bracelet and the option to push that button for the ambulance never  crossed through our brains.  It is a little scary how your brain functions, or doesn’t function  under  momentary mental chaos..

Long story short, (10 minutes, tops) the ambulance arrived.

Thinking about the MEDICAL ALERT FOR LIFE SUSTAINING TREATMENT paper hanging on the fridge….

‘under what circumstances should I point out the paper?  I know it says something about hospital transfer.  Just don’t look at it.  She has to go to the hospital, she can’t breathe.  So what if she stops breathing, would they resuscitate her? don’t get the paper.”

“I want to go with you”

“ok, no problem”

So I rode in the ambulance.  I didn’t mention the paper on the fridge and for some reason I started to feel guilty about it, but I don’t know how to handle this.

You know how it works, things happen fast and  information get  transferred quickly these days.  Suddenly it seemed that the hospital ER. had  all of moms medical records straight  from her Dr’s office and included was a copy of the MEDICAL ALERT FOR LIFE SUSTAINING TREATMENT and they asked me if I knew what it said and Of course I said yes.

The doctors office has their copy  of course!

 

I’m scared now. I need to stay with her.

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both with the flu and  mom also had pneumonia

 

Everyone puts on a mask before coming into her “booth”.  They have her on oxygen, of course,  but her heart rate is very high, and she has a fever, they keep saying “frail” and suggesting pneumonia.  Not only did they had her medical records but they  even had the x-ray she had had 4 days earlier and said it was clear.

Mom can’t hear and she has dementia, so she needs someone with her who understands all of this.  That is usually me and I’m good at it, as we have evolved to this.

They took her for another x-ray, and did the nasal swab for flu.  I didn’t want her out of my sight,  I need to translate, not really translate but sometimes I need to be her ears, her mind and her voice.

 There are so many people that come in and out to do a variety of things to and for mom and I have  explained the hearing and dementia numerous times, I just wanted to scream For Christ sake write this stuff at the top of the damn chart, and highlight it, it’s important stuff!!! 

 

 

 

All of a sudden the head nurse came over to the sliding glass door of the”booth” and taped a couple different papers to the outside of the glass and she walked away.  I went to see what the papers were…….

caution, contagious, droplets and contact; wear proper coverage

….. what does this mean?  

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Tying to get up out of bed in ER

“I’m going to need to go to the bathroom”

“okay, well we need to call the nurse, hold on a minute”

I pressed the call button

After dressing in what looked like a hazmat suit the nurse came in and looking at mom , the nurse  spoke too softly

“how can I help you?”

so I answered for mom

“she need to use the bathroom, and I have a question about the signs on the door”

“well she can’t get up, your going to need to use the bedpan”

mom groaned (who wouldn’t)

After being summoned for the third visit to help mom to use the bedpan and the noticeable  (body language) impatience of the nurse, I just started to help mom with the bedpan  myself.

She requires patience,  she isn’t stupid, she has dementia,  so be kind to her, that face you are looking at has a history and a life story too and she’s my mom, so be patient with her.

Finally one of those bedpan visits the nurse did inform me that mom tested positive for the flu and the x-ray did show a little pneumonia, that is why the sign had to go on the door.

I found myself getting frustrated, and I’m scared.  I can’t leave her for a second either, she keeps forgetting that she has to stay in bed, she doesn’t understand why we are here.

“can’t we just go home?”

“we can’t yet mom and actually you are going to stay overnight”

groaning again and a sincere childlike sadness on her face

My heart breaks for her.

“Its okay, mom, I will stay with you”

with resignation

“okay”

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Three  demanding weeks have passed, after the week in the hospital and the two weeks in rehab mom will be coming home on Friday.

Things have changed for mom since we drove away that morning  in the ambulance.  Although mom has come a long way since then, I am realistic enough to understand that this is likely a permanent step back.

She no longer has her cane, she needs to use her walker.

She now will need oxygen at home and I will need to monitor her oxygen levels to be sure they stay above 90.

She can not get up without assistance and she can never be alone.  I may need to get a bed alarm.

We have new furniture too; a commode, it makes sitting and getting up from the toilet so much easier for her.

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working hard at rehab

 


I do feel a lot better about the Form on the Fridge;

DNR does not mean that the patient will not be cared for.  I have included the link below to prevent the stress of knowing what the right thing is to do.  I have done a lot of reading over the past few weeks.  I have learned a lot and I honestly feel we all need to understand this emotional process so as not to panic that your loved one won’t get a simple thing like oxygen.


click here to understand the medical orders for life sustaining treatment order

MEDICAL ORDERS FOR LIFE SUSTAINING TREATMENT

DNR – DO NOT RESUSITATE

DNI – DO NOT INTUBATE

DNH – DO NOT TRANSFER TO HOSPITAL  (unless needed for comfort)


So although we may have made a step backwards,  we still are making memories.

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Easter visit at Rehab

 

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afternoon tea with mom while in rehab
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She Never Complains

“Oh,   it’s just a little tickle”

“How are you feeling mom?”

“oh fine”

I know I have mentioned this  before but mom NEVER complains. Let me be more specific about that, she never complains about her health or how she is feeling.  She does however complain about waiting in line for anything (and she makes loud comments about how slow people are),  the weather ( it is too hot , too cold, too wet, too humid),  technology (of course , how can she learn it all), the dogs barking  and lots more,  just not about herself or how she is feeling.

Moms immune system is amazing, always has been.   She receives her flu shot faithfully every year, she has had her pneumonia shot ( I think that is every 10 years) she also had the whooping cough booster.  She does not take any medication other that a vitamin B12. That is impressive for a woman in her 90th year.

I have mentioned in previous posts my concern about her diet and nutrition, that is due, in part to her lack of appetite.   There is serious evidence that appetite loss going hand in hand with dementia and Alzheimer disease. She does drink her (ensure + ) shakes, when I place them in front of her, and I try to force her to drink water, by reminding her constantly, I keep her cup next to her all the time. Still a challenge.

I believe I have also mentioned her stubbornness, but did I ever mention she was  a nurse?  That is how her and daddy met. (story for another time) So just like a nurse and a mother, she cares for others and puts her own needs last.   Still.

nurse mom
So pretty and so young

 

When someone you know has a cold or isn’t feeling well,  you know it, I mean they sound funny ( congestion makes us sound funny) for one thing,   and of course the nose blowing  and groaning, for some. But sometimes they are just out of sorts,  just like with a child you have to try to figure it out .  This is how it is with mom now, I have to try to figure it out.

She  slouches in her chair slightly and pulls her afghan up around her neck

“are you ok mom, do you need anything?”

“no, I’m just cold”

She has a slight fever, (99.8).  I warmed her corn bag for her and put it under her afghan so it could help to warm her up a bit.  Give her some Motrin and force liquids.

regardless of how she feels she really only ever says

“oh fine”

one time recently she said

“eh just not 100%”

So how do you know and how can you tell what’s wrong or what hurts, other than the obvious I mean.  I have to ask very specific questions, even then I don’t get a good answer.

“does your head hurt mom”

“no not really”

what does “not really” even  mean. What I think it means is that, it does hurt but not too bad or at least not enough for her to say it outloud.

And when I say her short term memory is bad,  it is these situations when it becomes a real problem.   I mean she can be coughing a lot one minute with obvious chest congestion ….

”goodness mother that is an awful cough, how are you feeling”

seconds to process and she forgets she has a cough.

“Oh,  it’s just a little tickle”

Bob and I were discussing my concerns and he made it clear I should be concerned

“she must be feeling pretty bad, she hasn’t had a cookie in days”

we chuckled,  but there is a lot of truth to that.  Mom always eats a cookie after her meals, even if she doesn’t finish her meal she still allows herself the treat.

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It is so much harder to do anything when you are not feeling well, everything seems to be so much more difficult to accomplish, even getting dressed.   Mom gets understandably frustrated, and when she gets frustrated she mumbles clearly

“oh for Christ sake”

That is my cue to go and assist her.  Today I told her that I am thinking that she thinks  my new name is Oh For Christ Sake. She chuckled. I love that I can still make her chuckle, even when we are both under the weather.

Mom is so weak these days ( but even more so when she is sick) that she has a hard time pulling her pants up, imagine when you get that weak, how helpless you must feel. Because she is sick,  and she is coughing a lot, that is causing  a lot of other problems. When you cough you pee, usually simultaneously.   (Often times that peeing gets on the chair, so when she gets up to go to her room, I wash the chair and put a towel down) When you pee you need to change your clothes.  When you need to change your clothes, you need to walk to your room. When you walk into your room you need to take out dry clothes to put on. Before you put on your dry clothes, you need to take off the ones you currently have on.  Once your wet clothes are off and your dry clothes are on you need to get back to your chair. (somewhere during this process, I will here my name, “oh for Christ sake”, and I will go assist her) So coughing is a lot more complicated than just a cough.

Okay so she is all snuggled back in her chair, wish fresh clothes and fresh water and she taps the arm of the chair and encourages Rookie to come up on her lap.  Rookie jumped but moms arm was in the wrong spot and Rookies claw caught moms skin and tore it like paper.

“oh damn”

she never talks like that

“its OK, I’ll fix it”

as I was washing  and covering her newest cut , she looked at me

“I’m a mess, huh”

“right now, yes, we both are mom”

 

2 days of this and then….

A trip to the doctor and the clinic for her chest x-ray (still  waiting on those results) picked up her antibiotic (concerns about a lung infection)  and back home. She is resting again.

 

She is weak and shaky so I didn’t trust her to walk to bed on her own so I assisted her in her evening shuffle to bed

”what would I do with out you?”

a lump catches in my throat, (it is the second time in recent days she has said this) and it is a second before I can respond

“good thing we don’t need to worry about that mom”

 

 

 

Stubborn Insecurities

“yes, I didn’t know where you were”

” Deb?”

seconds later and a little louder in her weak voice

“Debbie?”

“what mom, what’s the matter”

“where are you?”

“I’m right here, bringing in firewood, what wrong?”

“nothing, I just didn’t know where you were”

“okay, I’ll be right in”

A few minutes later, it’s  the same scene,

She does not like me to be too far away from her these days.  She checks for me often.  If I’m in the office or my sewing nook downstairs , she calls to me.

“Deb”

“I’m down here mom”

“okay, just checking”

Sometimes, if I’m sewing, she comes down and joins me and she curls up on the couch in the heat of the wood stove and she nods off. (that’s my favorite, so I know where she is too )

So many people comment about the stubborn people in their families. We all have them,  or we are them. (sorry, about the grammar)   I think stubbornness could be misunderstood some of the time. As people age, what we perceive sometimes  as being stubborn is actually their  insecurity.

Mom carts a lot around with her everyday, 3 bags.   She has her pocket book (1) cram packed with, I don’t even know what.   The other bag (2)   is a cloth like shopping bag, in that  one she has a few  word search books (most have a pen or pencil stuck in the binding), incontinence pads, tissues ( always so many tissues) and a few other odds and ends.  The  small bag (3) fits inside the larger bag,  in that one are more tissues (again, for her ever running nose) and she has a few skeins of her crochet cotton and a crochet hook,  (which she never uses)

“mom, why don’t you leave the bags here, or take just the smaller one with you”

“why?”

“well it is a lot to carry everyday”

she defensively, almost panicky replies

“no, I want it with me, I might have a few minutes to crochet, I just want to have it with me”

understanding

“okay, just thought I’d mention it”

I would never  battle with her over it, I mean,  it is a pain in the neck to carry her bags around.  I know she isn’t being stubborn, it goes deeper than that, you can see it on her face.   I think it is a secure feeling, to have the familiar things with her, things  that she thinks she needs or should have.  She has always carried at least her pocket book, but now she insists on  the extra bags too.   Mind you, she isn’t the one to  carry them, her bus driver carries them to the bus and when I get her off the bus I carry them into the house.  She does, however,  have them hanging on the arm of her chair at day care everyday.  She has forgotten her cane, but never her bags.   So she has all of this luggage to take with her and she feels good about it.

There once was a day where she could pack for 7 of us for a weekend at camp and have it all in the car with all seven people and we fit comfortably – so she once packed lightly.

I wish I knew what she was thinking about when she insists on bringing her bags because, she does not use anything from any of the bags  except for  the tissues.   But really, so what if  she carries a few extra  bags around wherever she goes, I don’t think that it is just that she is being stubborn, I believe it gives her that sense of comfort.


 

Mom has been walking with a cane for a very long time.  I believe at first it was for security.  One year when Bruce was here visiting he wanted to bring Mom to Fenway for a game so she brought her cane  (it was new at the time and we had to walk a little ways). The staff  and security at Fenway Park treated mom  like a queen, she got to cut in line and go through the large gate they opened for her, none of the rest of us could go just her.  fenway bruce nate and mom

I think Barbara was the one to encourage Mom to use a cane way back , she even bought her a pretty pink flowered one. So over the past 20 years she has grown familiar with the use of a cane.

When the insurance and health care, committee, I’ll call them, came to evaluate moms mobility they told her she should be using a walker. One was provided for her through her insurance.    Mom would push the walker out of her way and wobbly walk around it to get where she wanted to be.

“Mom, you’re suppose to be using that”

”oh, I’m just going to the bathroom”

”I understand, but that is the point, your suppose to use it”

” oh, it’s too bulky”

and it went like that for a very long time, months. So I finally folded it up ant put it in the closet.

Every once in a while I bring it out and try to encourage her to use it, but she still pushes it out of her way and now even wobblier walks around it.

Is she being stubborn? I mean I believe that the stubbornness lies in her genes, and she definitely has that gene, but is that refusal to use her walker just being stubborn or is it more?

I have noticed lately when we are walking to the car or into the house she reaches  for  my hand with her free hand and uses her cane with the other, similar to the security of a walker, dang it.   But it is  another change and one more thing she would  need  to adjust too.   Again, the cane is familiar to her, it is what she understands.  Not stubbornness alone but also security in the familiar.

 

“Deb?”

again

“Debbie?”

I reply but she can’t hear

“yup mom, I”m in the office”

I hear the back door open and I know she is going out on the deck looking for me.

“Debbie?”

I come out of the office  and up the stairs

“mom, are you looking for me?”

 

I’m never far from her.

I still remember as a child the comfort that I found just hearing the dishes clanging in the kitchen, or the cabinets closing and opening as she bustled about the kitchen.  I loved the noise of the vacuum when I laid sick on the couch. There is so much comfort just knowing that the person that cares for you is close by.  I had the best  secure and comforting childhood (12 and under) and  I knew where mom was all of the time.

When she calls out to me, tying to find me around the house, I equate her need to know where I am, to what  I felt as a child.  That she must need that same  comfort and security that she once  provided for me.

“yes, I didn’t know where you were”

“I am in the office doing some work, I’ll be right up”

 

I look at her and I still see my secure  independent mom – but her behavior shows me something else.  I hope I can provide the same comfort that she provided for me.

 

 

 

 

 

 

 

An Unexpected Relationship

“I can watch your mom”

“Mom, Bob and I are going out tomorrow night and Rosellen is coming over to stay with you”

her face softens

”oh okay, she is such a sweet girl”

”I agree, we are very lucky to have her”

 

I don’t leave Mom alone anymore. Well, that is not entirely true, I have.  I have run to the grocery store or post office  if she is settled in her chair.  But it’s a short trip and I’m a nervous wreck the whole time. For the most part though,  I stay home  with her or I take her with me wherever I go.  When I do have the opportunity to attend an event that doesn’t interest Mom, or that she is unable to participate in – I have found the perfect solution.

Rosellen!

 

rosellen 3

 

There is so much talk about teenagers and young adults these days that is not always positive. I work with teenagers and young adults and I believe most are good just like  I feel most adults are good.   Some students (teenagers/young adults), however, stand out from the others.  To emphasize this  I must tell you  about an extraordinary (so understated) teenager/young adult that mom has developed a very special relationship with.

I may have mentioned some of this in an earlier post,  I apologize if it is repetitive, that appears to always be the  theme around here.

Last year I wanted to take a class which was on Thursday nights for 8 weeks and I was trying to promote this evening class to my students…

”would anyone be interested in taking a bee class (raising honeybees) with me?”

There was some  interest and there was a little discussion about the bee class.   I clarified that my attendance was contingent on finding a mom sitter,  and  I was half kidding, half serious.

”if you don’t want to take the bee class with me , would you want to watch my mom while I take the class?”

I didn’t expect an answer. I didn’t really think they were listening.  I continued  with class.

”I can watch your mom.”

Rosellen came to me after class and stated quite simply.

“I can watch your mom”

I was so surprised that someone responded and so pleasantly surprised that it was Rosellen.

The best analogy that I have about leaving mom is when you leave  your child  with a babysitter for the first time.  You want to get out but you are also still concerned about the well being of your child.  You check on them several times by calling the sitter. You know what I mean.  Those of you with kids know the feeling.  That is how I felt leaving mom with someone too.  Don’t get me wrong, I want to go out.   But I take care of mom the best.  Will someone else care for her the same as I do?  There are some things that I  think mom could be embarrassed about so I would want someone to be discreet.  What if she falls?  What if she chokes?  

We planned a meeting with Rosellen.  She  came over  with her mom to meet mom. (great family, I have had most of her siblings as students and I loved them and I loved her mom immediately.)  Rosellen’s grandmother had lived with her for a while before her passing and so Rosellen was quite familiar with the concerns that I had about leaving mom.  She understood  and reassured me about everything I brought up and her mom also reassured me about Rosellen’s abilities.   Rosellen talked to mom, made sure she knew that it was all about her, she asked her questions and sincerely listened to moms answers.   I felt very good about the meeting.

We all agreed that it was going to be a good arrangement.  That was a year ago.

I took the bee class and I also raise honeybees now.  More importantly Rosellen was interested in continuing coming to  stay with mom if I were to go out.

I’ll text Rosellen to check on her availability.   I really don’t go out very often, maybe once every six or eight weeks, really.  Sometimes she is available and other times she isn’t,  but either way it has been a fantastic arrangement for all.

Rosellen arrives and cheerily greets Mom

rosellen and mom

”Hi Mrs.  King, I haven’t seen you in a long time how are you?”

You know how you can see so much in people’s eyes, well Mom is easy for me to read through her eyes and I see her eyes brighten as she responds to Rosellen.

”oh, I’m  pretty good”

Rosellen is there for mom in every way. She never acts like mom isn’t capable of anything but instead she builds moms confidence.

They have developed the  sweetest relationship.  Mom looks forward to seeing Rosellen.  I know because I see it in her eyes and hear it in her voice when she knows Rosellen is coming over.

Mom will “wait up” ( asleep in her chair ) for us to get home, which is cute.

“I’m afraid I wasn’t good company for her tonight”

Rosellen looked at me and looked at mom  and smiled

“yes you were, we had dinner and we chatted a little and we watched a little T.V., it was fine, you only fell asleep the last hour”

 

….and they hug good night.

 

 

 

 

 

 

 

 

 

Hindered Hobbies

“I better get busy on dishcloths”

“I was so mad when Jackie Caulicout was chosen to sing at graduation”

“why?”

” we both sang, and there were 2 events,  class night and graduation, I would have preferred graduation but I got class night and she got to sing at graduation.”

high school graduation
moms high school graduation

 

Mom has had so many hobbies and interests; music and singing were right up there at the top of her hobby list along with,  gardening, reading, traveling,  crocheting, crossword puzzles, and so much more.   She struggles to do all of them.  

Mom had a beautiful voice, she took  voice lessons at  Boston Conservatory, she use to sing at weddings,  I mean, she could sing and sing well.  She loved music.  She played the piano and organ her whole life.  I still think she can play when she sits at a keyboard, maybe not perfectly but she can tap out a recognizeable tune.  She will try to sing along in any musical situation and wants to sing on key, when she cant, she just stops.  Her voice is weak and cracks a lot so she feels unable to sing around others.  She does sing for the little ones though,  so” 2 little blackbirds”,  “pat- a- cake” and “rock a bye baby” have become  my favorite songs that she sings.

 

 

 

 

When we see old people who have lost the abilities to do so many things,  I dont think we always realize that they have a variety of history which includes their hobbies. The things they once enjoyed doing they can not longer do.  The things they looked forward to doing. The things that when they were working and raising families they didn’t have time to do.  Hobbies.  Hindered now by their physical and congnitive abilities.

So moms beautiful singing, has been replaced with lullibies and tapping out “A” “B” “C” on the piano.  I try to play music more often at home so she can at least hear what she once enjoyed.

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Just stirring from her after dinner nap

“What time is it?”

“It is 7:30 “

“ohhh, I might as well get comfortable in my bed.”

“okay mom, good night, Ill come and tuck you in”

“I’ll probably read for a little while .”

She doesn’t read.

The  church newsletter  arrived and she picked it up to read it,  her hands tremble so much that she can not find the words as they dance around..  It seems like a very long time  that she spends  sitting and staring at that paper.   I can only  hope she has read at least some of it.  Even after she reads it,  the newsletter, or anything , she will forget she has read it and attempt the process once more.

Often we read to mom, not a whole book or anything, but tidbits of information, brief articles from the paper, the church newsletter and even a new recipe.

Such an avid reader at one time, with a wide range of interests.  Reading was one of her favorite hobbies.  Books or gift certificates to get books has always been  a great gift idea for mom. We would frequently go to the used book store with a bag full of books she had read and trade them in for  yet another bag full to be read.  She had an incredible range of interests,  religions, romance novels. She would read about places and people, from Royals and Bette White, to training your dog with Ceasar Milan.

“what are you reading mom?”

“I forget,   I’m sure it will come back to me as soon as I  read a couple if pages.”

“what about the quote book I got you for Christmas, it’s beside your bed.  I thought you might enjoy it.”

The book is 365 positive quotes, they are very short quotes.  I love the book, it is quite positive and I was hoping it could hold her interest long enough for her to read and retain at least one short quote or a  piece of a quote or part of what she had read.

quote book

It was a couple years ago when I realized she was just not reading or if she was then  she was not comprehending.     I would go her room to tuck her in or  to turn out her light  and she would be there with a book open on her chest and she was fast asleep.  Oh, I know, who hasn’t done that, right.   I know, but that was not the sign she was not reading or comprehending.    The next night it was a different book, opened to the middle of the book.  Every once in a while she will retrieve a previously read book from the bookcase.

“I think I’ll read this book , I don’t know why I haven’t read it yet.It was in the bookcase”

For years we both read every night, we would share our books with each other before we went to purchase or trade them  in for more.  We have not bought or traded any books in a few years.

She doesn’t read.

What can you replace reading with?

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Mom has traveled all over the country, often times by herself.  I already told you about her last trip to Florida to see Scot, so she can no longer travel alone.

How do you replace travel?

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Mom started really crocheting a lot  when she quit smoking (another admirable trait). (She didn’t really smoke very long either, and  back when she started smoking it was the so called cool thing to do and she was, well,  she was cool.)

Crocheting, they say,  is a lost art. Mom has crochet for at least 50 years, but most of it has been in the last 30 years.  She has made such beautiful afghans, sweaters, mittens, stuffed animals, curtains (I loved my curtains, she made me) and so much more.  She taught me to crochet a long time ago, but I did not do anywhere as much as she did.   I’m trying to find pictures of some of her best work.

 


I first noticed her having  difficulty with crocheting  about the same time everything else started falling apart, a few years back.

Frustrated.

“This is the third time I have ripped this out, these directions are to confusing.”

“let me look, see if I can help”

I would read her the pattern from the book as she would crochet the item.  Eventually I would just complete the difficult parts for her.  Her abilities evolved to only being able to complete the simplest pattern or stitch.

“I should get busy on making dishcloths.”

”everyone loves them, that’s for sure”

Her heart and intent are  as always is in the right place, and she carries her crochet bag , with her hook and crochet cotton with her everyday when she goes to daycare, still.   I have mentioned that maybe she should just leave that bag home since she really doesn’t have time to work on dishcloths at daycare, but she insists.

“you never know when, I might get a chance to work on it”

She has not made a dishcloth in well over a year, she can’t.

How do you replace crocheting?

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A few years back, quite a few now.

“I guess I just don’t watch enough T.V. ,  I am having a hard time with the crossword this week.”

Slowly crossword puzzles transitioned to word searches  ( she will still carry her word search books with her, in the same bag as her crocheting) and now  that has been replaced with the coloring.

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She is unable to  garden, travel,  play the piano, crochet a new dishcloth, or complete a crossword,  due to either her cognitive or physical limitations.

Do  we attempt to find new hobbies that  fit with her new  (lesser) abilities?  Are her interests even the same as they once were?  How do I concentrate on what she can do, when I only see her losing her ability to do all the things she loved doing?  What now?  

  Old age has a very cruel side.

 

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watching the chickens or looking at photos  (replaces reading?)
mom picking weeds
picking the grass out between the rocks  (replaces gardening?)

 

 

 

 

 

GO PATS!

“are you ready for some football?”

“Big day today Mom”

“Why?”

“Because it is the Super Bowl”

“Oh, Whoopie”

 

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cheerleader

 

Mom loves baseball and really understood the game quite, well, football is a different story altogether.

When Rob was staying with us for a while, he tried so often to explain the details of the game – Mom still could not  get into it at all. Me, on the other hand started getting very interested!

 

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“Want some Super Bowl snacks Mom?”

“Of course, when did you ever know me to say no to food?”

“Are you ready for some football?”

“Sure”

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Uncomplicated Relationships

“Pretty blue sky today”

“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.

life is good


 

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.

nana with paxon and timmyt

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.


piano with paxton

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.

 

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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.

nana with timmy

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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”


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.