I am still adjusting to life without you in it,and it is still quite odd. There are still times that I hear you call for me, although that is happening less and less. I am just starting to realize that I don’t need to rush home for your day care bus and that I don’t need to buy your ensure shakes at the grocery store. That you are not sleeping late. That I don’t need to get your prescriptions. No plate for you at dinner.They called from the doctors office the other day – to schedule your annual hearing check. All little adjustments to the day.
Those realizations are…….. well I am not quite sure what they are, not really a slap in the face, but more like a simple awareness that momentarily saddens me. I’m not as sobbing kind of sad as I was at first mom, but, times like, right now as I’m writing this, I get that lump in the throat back, and my eyes well up, but I’m okay, really. I just miss you. We all do. We are supporting each other.
Talking about you in the past tense is difficult.
I wish you would show me “a sign” or “visit” me so I would know you are okay too.
Is that stupid/silly of me? I just miss you.
I still expect to share everything with you, I want to explain how Iraida’s surgery went, or that Barbara is doing great at quitting smoking and that Megan almost hit a deer today, Katie is at her last class tonight, Rookie licked a hole in your chair, and yes the chickens are fine in the cold weather. I borrowed your scarf, the one you had hanging on your mirror in your room, it coordinates with my new gloves perfectly and I didn’t think you would mind.
Our mother /daughter plant has so many new shoots on it and Megan’s has actually started to regrow!
Last year when you were sick with the flu and pneumonia and our mother/daughter plant started wilting, I thought it was a sign that you were not going to pull through. This plant has so much significance for us, however I guess I read too much into it, a little bit like I am doing now, what do all these new shoots (daughters) mean? If anything?
It has been emotionally difficult trying to get all of your “affairs” in order. Although, the odd side to that is that when everything is finally done, what will I have to do for you? I think I will miss the time with you, if that is what it is.
I’ve had to explain so many times;
“my mom has recently passed away…”
… when selling your car. … when cancelling your car insurance. … when closing accounts. … when sending paperwork to the life insurance company. … when ordering your marker for the cemetery. etc.
Although everyone, in each situation has been kind and offering their condolences, I have started to feel they are just words that I really can no longer hear or find meaning in them. It is not their fault, there isn’t much else people can say.
However my responses have started to be a little bit more involved, rather than the simple thank you, I expand a little, just letting them know a little bit more. …
” I am sorry, please accept our condolences for the loss of your mother”
my response:
“thank you , I still , I think I always will miss her terribly, but I am so grateful for the years we had together, she was just so much more than my mom”
Sometimes that response creates a little more conversation but certainly a smile or another comment that places you someplace other than a simple condolence and then I can always find something fun to say.
“I am so lucky, luckier than most, and I have so many great memories”
or
“Strong, funny woman, she was”
or
“She was definitely my hero in so many ways”
I feel that empty spot where you always were – I just miss you.
“I know but sometimes you are just so wobbly, I don’t want you to fall”
“well, I don’t want to become dependent on it”
UGH.
I wish sometimes, that I could just tell her what to do and she would simply do it without an argument or discussion or defiance, but that does not ever happen, and it never worked when she tried telling me what to do either.
Sometimes, I think;
“I’m busy, just do what I tell you”
Again, my once extremely independent mom, being told what to do. I need to take a step back and remind myself of the changes she has had to make, and how difficult these transitions must be for her. I need to find balance too. So I take her arm and assist her with the rest of the short journey to the bathroom.
Her balance has declined so much this year. I do always hold her hand or take her arm when she is on her way to the car or if we walk outback, places she can’t use her walker. Although she most often reaches for an outstretched assistive hand, she also comments:
“don’t you think I can do it”
or
“you don’t have to walk with me, I know I’m slow”
or
“I’m fine just go ahead”
once upon a time she did have great balance
———— and I believe she thinks she still does —————-
I read a lot about how to handle different situations with an aging loved one with dementia and although none are specific to any one person, they often do offer many possibly helpful tips. As a caretaker, it is important to have an emotional balance. Mom is not my child, she is my dependent.
– the few minutes it takes to keep connected is worth that time at least ten fold. Staying connect will give you both the emotional balance to help you through.
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We, (by we, I mean mom) are however, at the point where the use of her walker can no longer be negotiable.
As we all have done with our children, we pick our battles, and that is true with our aging parents as well. This particular battle is one for obvious safety, so I need to insist.
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FROM A PREVIOUS POSTING;
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.
———————-
So here we are at the point where it is a must to use that walker.
…again, getting up from her chair
”take your walker, Mom”
”oh leave me alone”
she chuckles at her own attitude and I do too
”I know it is a pain in the neck, mom, but I don’t want you to fall”
”I haven’t fallen yet”
still with that grin on her face.
She HAS fallen…… 3 times in as many months, she can no longer recall those falls, and I can’t get them off my mind. I can’t help thinking she will fall again, especially when I see her holding furniture and walls on her “shuffle-wobble” as she attempts to maneuver from one place to another.
Just when I think I’m getting somewhere (she is using her walker everywhere) then I see this…
…this is her walker outside of the bathroom door! and she is inside! I have cleared any possible obstructions in there and there is plenty of room, I mean the walker fits perfectly.
..and the other day she used her walker and walked into the kitchen to get a paper towel to blow her nose (rough huh) …. as she was leaving the kitchen she left her walker behind, right in the middle of the floor. It was right in front of her. She literally had to walk out from behind the handles to leave it behind.
————
“I’m so nervous watching you walk without your walker”
“then don’t watch”
that spunk can be exhausing
————
Getting up from her chair and pushing her walker out of the way…
”Mom take your walker”
she keeps moving, obviously ignoring me
A little louder
”Mom, your walker”
With a little grin and a lot of attitude
”I don’t want to”
..and she keeps going
I have cleared all of our floors of anything that may get in the way of her walker travels. There are no area rugs, nothing on the floor that can get in her way. (Except maybe Moses) I made sure that in her travels around home she would not be running into any obstacles. I moved the bookcase next to her bed to allow room for her walker to be right at her bedside. I have tried to make it more convenient to use her walker. I made her a pretty washable discreet bag that ties to her walker.
I’ll make more , maybe even seasonal ones.
I bought a tray to go over the top if she needs/wants to carry something (again “letting her” hang on to some independence) and I tie a little trash bag to the side.
So it should be a relatively simple transition, wouldn’t you think?
We have used a wheelchair for a number of years with mom for a variety of situations. We all did this to make sure she could attend whatever activity we were participating in.
So I’m questioning all of this…. why is it okay for us to take her somewhere in a wheelchair but she balks at the use of a walker? Is it because she doesn’t have to exert much effort to be pushed in a wheelchair and she is able to keep up with the rest of us, or actually we keep her up with us? I understand if she thinks she is holding others back or slowing them down but at home, she impacts no one with the pace at which she moves.
If you saw the way she wobbles you would understand my concern. She has such poor balance and often stumbles and sways. I suppose that I am entitled to stumble and sway a bit too as I seek out my own “balance”.
I will continue to promote and encourage the walker use and I will always hold her arm when she decides to ignore the mention of the walker. Maybe eventually it will become the new normal for her to reach for her walker and she will simply forgot this transition.
and she doesn’t finish but retreats back into herself
Right now I’m watching Mom , sleeping in her chair. I honestly wonder more about her life now than I ever have. Her life before me I mean. The parts she never filled me in on. I look at the pictures and I want to know the story behind them.
Was that your own chicken you are holding?
Is that your cat?
That baby picture obviously you are at your farm and is that your baby buggy in the background?
You look so happy riding your bike mom, where is that?
mom riding her bike
I wish I knew more and had asked more questions over the years, about the pictures and the stories behind them. She always had such funny and interesting stories to tell about her growing up years, but now watching her sleep I wonder about so many different parts of her life.
thinking…
Did I hear enough?
Did I ask enough questions?
Will I be able to share some of her stories?
Is anyone going to be interested in her stories?
It would be so nice to hear some of those stories again.
I am thinking about all of the relationships she has had in her 90 years. I want to recall for her sake.
Now that she is unable to recall very accurately to tell me more, is when I feel the need to want to know more. I often times will still ask about a picture or an old relative and she will respond with confidence and sadly I question if that is accurate recall. But then
….does that matter?
————————————————————————————————————–
Our “first relationships” to develop are with our parents and siblings. What were those relationships like for mom, I know the basic answers but not the details. I do look at old photos and try to piece together the things she has told me.
Mom always spoke lovingly about her own dad with the utmost respect and admiration. He was a “kind and gentle giant” . But, when he spoke, you listened. Even when he didn’t speak you listened!
“He had a way of looking at you that you knew not to say another word.”
“All he had to say when we were sitting at the table is one word… “Bud”,
or whomever, in his stern voice. Bud would stop what he was doing right away, and there was no discussion of what he wanted Bud to stop doing.
Moms Mom, was very sweet, to everyone, always. Welcoming to all (parents in a future post)
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Mom adored her siblings. (siblings in a future post)
“They always made me feel special”
referring to her parents and siblings. She knew she was loved. Mom was the “surprise”, and ten years younger than Uncle Bud.
“There was always family around, I was never lonely”
————————————————————————————————————-
The firsts of any kind of relationship come with intense excitement.
HER FIRST (AND LAST) LOVE
“we could look across the table from each other and not say a word and know what the other was thinking”
When mom tells stories or talks about the special relationship that her and dad had, I think that what they shared was rare. I think that now, but growing up, I thought that all husbands and wives had what my parents had.
They don’t.
I have never gotten tired of hearing stories about when my parents were young. They had great friends and so much fun with their friends. (friends in future post)
First love in future post, too , but all of this leads to , drum roll please…..
HER FIRST BORN……
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AGAIN…The firsts of any kind of relationship come with intense excitement.
HER FIRST BORN
Our “first relationships” to develop are with our parents and siblings.
There is not much more special than your first born child,
that is, of course, until your second born child comes along.
What happens through these years – just look at the way she is looking at him (above) and how happy she looks with him (below). That love, that connection, so evident through her eyes then … and now…
Does geography play a part in a relationship?
Not in this case… not in the least. Mom has certain expectations of Bruce. She would usually visit him pretty much wherever he has lived.
“I always liked to know where my kids are.”
The frequent phone calls, the flowers he sent/still sends for every occasion. Always on mothers day regardless of where he has been. She will definitely mention if he hasn’t called or if she didn’t receive her flowers on a particular occasion. Funny though that she acts surprised when she does receive them.
her most recent bouquet
Bruce had the longest time with daddy, that must have made it more difficult for him in some ways.
Was there an expectation to care for mom?
Was there an expectation to care for the rest of us?
But he rarely talked/talks about it; his relationships with mom or dad. Bruce was only 18, almost 19 when we lost daddy.
Did that experience for Bruce, barely a young man, help to mold his relationship with mom?
Bruce is an oxymoron, he is a “sensitive male”, a real one, and I have always wondered if he learned that from mom or dad but most likely it was the combination.
“So mom what are the things you remember about Bruce as a child?”
“oh I don’t know, I guess he was always on the go, always liked a little adventure”
“well that has never changed”
He always looking for adventure.
“What else mom? About Bruce?”
“each child has their own special”…….
and she doesn’t finish but retreats back into herself
Please, mom come back….. just for a bit.
“what else mom, about Bruce? What are some special things about your relationship with Bruce?”
“oh I don’t know, I don’t know if I know what you are asking.”
she was quiet for a minute
“Music, I guess, we both grew up enjoying music.”
” oh that’s true, so he must have acquired his love of music, and his musical talent from you then.”
“well I don’t know about that.”
Bruce and Robs first guitars.. and the family tabogan!
She has talked about each of my siblings at length so often over the years, and now I feel that I need to squeeze out every last memory . Why didn’t I journal more over the years. I want to share with all of my siblings their special place in moms heart.
I try again… please be good timing
“What are some things he did as a kid?”
“He always found good healthy fun, like building the log cabin in Concord. He was older and daddy never had a problem with him using any of the tools”
“Those were such fun years living there, it was good for everybody.”
again she retreats
——————————————————
look closely. Bruce is up the highest, then Scot, Rob and I’m the last one up. Look at the date.
We all looked up to Bruce, literally and figuratively.
“Did you ever get mad at him, I mean did he misbehave, ever?
“You know I don’t believe so, well not that I know of, he was a pretty good boy”
(Well that’s cute, he was a pretty good boy. )
“were you mad when he cracked up the Rambler?”
“oh no, I was glad he was alright”
mom floating down the river while visiting Bruce and I in Colorado
“He brought you to your first red sox game with your first great grandchild, didn’t he”
I show her the picture
“oh that’s right, he did , didn’t he?”
Again, her recall is foggy. I wish I had written things down over the years, documented some of the things she has said. Her concerns about her kids. Her memories, both happy and sad. Mom was busy when we were growing up and may not have always had the time with us that she wanted and after we were all settled away from home is when she was able to have a bit of time. I believe she has had some of that time given back to her from each one of us.
We all know that her time is limited and I am sure you must be thinking the same way I’m thinking…..
I wish I had asked more questions.
I wish I had written things down.
I wish we all had had more time.
Will I be able to share my stories?
Will anyone be interested in my stories?
“mom, Bruce is going to come for a visit.”
“what about Karen?”
“she can’t make it this trip”
I am so happy that Bruce is coming back again , even if for a short visit. That connection, that bond between a mother and child can always use a recharge at any age. And I need to hear his stories. Is that selfish of me? I need to hear more about her, I’m hanging on to her as best I can. I want to share her and her memories or what were her memories.
That love, that connection, so evident through her eyes then … and now…
“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
—————————————————————————————————————————————–
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.
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?
————————————————————————————————————————————–
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”
———————————————
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.
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
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.
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”
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.
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.
“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!
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
”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”
“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.”
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.
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.
crochet afghan – one of my favs
crochet afghan -well loved
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.
watching the chickens or looking at photos (replaces reading?)picking the grass out between the rocks (replaces gardening?)
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!
“Want some Super Bowl snacks Mom?”
“Of course, when did you ever know me to say no to food?”
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.
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.
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.
Raising Mom 