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”
“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”
“Strong, funny woman, she was”
“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”
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”
“you don’t have to walk with me, I know I’m slow”
“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.
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.
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?
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.
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)
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.
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……
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.
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”
“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.”
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
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”
“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”
“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.
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.
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”
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.
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