It Hangs on the Fridge and always hangs on My Heart

“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?!!)

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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.

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.

working hard at rehab

 

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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.

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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)

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

Easter visit at Rehab

 

afternoon tea with mom while in rehab

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She Sleeps

 

“mom, would you like a cup of tea?”

…no response

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

Sleep.

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

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

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

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

“how was your day?”

“oh good, uneventful, really?”

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

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

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

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

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

“whats the matter mom?

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

shuffling to her chair

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

“thats ok, go ahead and sit”

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

 

 

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

 

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

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

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

Mom sleeping with Delilah and Rookie

“I can’t believe I slept so late”

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

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

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

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

 

Who falls alseep during the super bowl?

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

 Either way and anywhere, she is where we are.

 

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

“I’m not a hat person”

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

 

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

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

Mom  is  such a  beautiful person inside and out.

   She is just tired.

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

………….and have served her well.

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

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

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

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

We say our good nights and off she will go.

She doesn’t read.

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

“I didn’t read much”

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

and I kiss her head

“love you too”

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

She sleeps.