My heart is smiling

When my brothers left home, I was just a kid.  First Doug left and then David.  I felt abandoned because they left me, just a kid, to deal with mom and everything that went along with dealing with mom and for a kid, that was a lot.
Life with mom was never normal or easy.  Life with mom was interesting and challenging.  I can say that now but for many years, I couldn't.  I spent the first part of life and childhood doing every thing I could to please her, to get that cup of love from her and to keep her sane.  It never worked, she would always have a psychotic episode and end up in the hospital.  So I never felt that what I did or accomplished was good enough for her and then I twisted that to mean that she doesn't love me.
By the time I was a teenager full of the normal teenage angst, I stopped chasing that cup of love, that I never did get.  I became resentful, bitter and angry, so the next 15 years were spent trying to hate her.  But I could never really hate her either.
At some point I realized that the resent and bitterness served no purpose what so ever and I became accepting of my mother and the person she was.  I looked at it like this, I loved my mother and I really didn't like her but I certainly didn't need to hate her or even try to hate her, because I just couldn't.  Even with all the crap that she pulled, I couldn't hold it against her and I always forgave her, just like she always forgave me.
Being home again and with mom everyday is one of the best decisions I've ever made and not only for mom and dad but for me too.  Suddenly I have been able to look back in time and look at the times with my mother and smile, yes I smile from my heart.  Now I'm seeing that the best thing that happened was my older brothers leaving the nest.  Why, because then it was just me and mom.  Now mom could be not a bit of a controlaholic but a lot of a controlaholic, and looking back, that's wasn't such a bad thing after all.  I can still do plies and petit jetes because she forced me to take ballet and I love going to the ballet to this day.  She forced me to into figure skating but I can skate so well that I was able to teach my kids and I play hockey and appreciate winter sports. She forced me into Jr. Forest Wardens but dammit, I learnt how to camp, light a fire without matches, use a compass, build a lean-to and I'm pretty sure I could do well on Survivor.  I hated music lessons but I can read music and appreciate music and I made sure that my kids do too and my daughter is a very talented musician.  
Mom liked to travel and to get it out my childhood system she took me to both Disneyland and Disney world.   Now, I did not want to go to Britain, mom forced me and I pretended to hate it but Stone hedge was cool as was everything else we saw.  Pearl Harbour didn't really appeal to me but I'm so glad she forced me on that tour because I learnt so much history in one day.  Thanks to mom I know that Mexico is more than tacos and Spain is still one of my favourite places in the world.  Asia, England, Greece, Spain, Hawaii, Mexico and the States were all stamps in my passport by the time I was 13 and that wanderlust stayed with me.  Thanks to mom, half of my bucket list is complete and at a young age I started to view the entire world as my home and not just Canmore.  She planted in me a global awareness that formed who I am.
When mom was sick, it wasn't good.  I had to tend to myself and do many things my self.  I think the term they use today is 'parentified' and everyone, family or friends would always say that Lisa-Marie is 12 going on 30.  I don't think that's a bad thing anymore.  Dammit I'm a strong woman and I was strong young woman and a strong girl and that is thanks to my mom and I'm glad I am.
I owe you mom, I owe you a lot.  So thanks, thank you from the bottom of my smiling heart.

The Dementia Diary: Just what I needed

The Dementia Diary: Just what I needed: I had an absolutely fabulous time away,  I cannot lie.  Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't...

Just what I needed

I had an absolutely fabulous time away,  I cannot lie.  Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't feed mom properly, but otherwise, I had a great getaway.
I returned last night and of course the first place I went was to see mom.  The look on her face said it all, her eyes brighten up and she said "You were gone."  The staff told me that she asked about me a couple times and so did Evelyn and Olga and Violet and Bob.   Evelyn said "You left without me," as she thought I had taken the train we were scheduled to take together.  I told her she didn't miss anything and that it broke down and we were stranded for 2 days.  When Robbie saw me he wheeled himself over and grabbed my hand as if to say "Welcome back, I missed you."  It felt really good to know that presence on the ward is appreciated and even better that even with their addled minds, some of residents have emblazoned me in their memories.
The time away was just what I needed and I'm so very glad that I moved back home.  Time in nature, communing with the trees, the water, the mountains and all the creatures that call it home forces me to see the simple loveliness in this world.  When it's in your face, you can't deny it.  The crisp air as it bites at your nose.   The trickle of water as it makes its path in the world.  The majesty of the mountains and the hard beauty they display.  The trees glistening with hoar frost.  The mule deer staring at me while she rested.  The ram who grunted "Leave me alone," when I got near and ran off to find a more desolate spot.  The woodpecker who was too busy to notice me.  Add friends and family and food to the mix and you have a fantabulous 3 days. 
I had times like this with mom.  Mom liked to walk and hike.  She liked to walk by the river and stop and listen to sounds.  Sometimes she would throw rocks into the water and sometimes she would just sit on the riverbanks and enjoy the beauty that this world offered her.   We hiked Mt. Assiniboine, Yamunska, Lady Macdonald, Stanely Glacier and Marble and Johnson Canyons, just to name a few.  It was during these hikes that we had our best arguments, sometimes so loud that the animals would run off and birds in the trees would fly off.  I would bolt ahead and would scream from a distance.  But in nature we would always come to a compromise and the issue would be resolved for now.
It  hurts my heart that mom couldn't join us this weekend.   It hurts my heart that she'll never be able to hike or walk with me again.  But, I'm so grateful that we had those treks together and were always able to put aside our differences and see the peace and beauty in the world.  Today I'll take outside and at least let her feel the crisp, cool air and watch the sunlight dance on the snow.  That's the best I can do.

A bit of respite

It was recommended to me by other caregivers and staff and the facility that after 7 weeks of being there everyday, that perhaps I might take some time to myself.  I was against the idea.  I felt guilty even thinking about it.  It made me anxious thinking that something could happen while I was away.  Then Audrey, who has been caring for her husband for 7 years, told me that caregivers will burn out.  Most of the caregivers are considerably older then I am, but still it could happen.  So, with much prodding I am taking a couple days off from care giving and will spend it with friends and family.  I hope mom will be all right.  The staff assured me that they will take good care of her.  They have my number in case of emergency
Wow, the child really is the parent now.

The Dementia Diary: The daily rollercoaster ride

The Dementia Diary: The daily rollercoaster ride: Everyday I go through the full gamut of emotions.  Happy, sad, angry, indifferent and even numb and sometimes even all of these at once.  Wh...

The daily rollercoaster ride

Everyday I go through the full gamut of emotions.  Happy, sad, angry, indifferent and even numb and sometimes even all of these at once.  When mother is alert and in the present I am happy.  She will say something or be aware of the conversation and add her two bits in or she will read the news or enjoy the pages of a magazine or sing the words to a song and she knows who I am and who the nurses are and where she is.  I know she is there so I cherish those minutes or hours that's she is with me.  But also during these times I will get sad.  It is during these times that mom is maybe too aware.  She wants to say something but can't.  She wants to go for a walk but can't.  She wants be knitting or having coffee with a friend, but she can't.  She is well aware that she is peeing in a diaper and that her hands won't let her scratch her nose and that her back might be hurting but she can't tell anyone.  She'll watch the people who can and then she will cry.  So I cry too.  It is during the crying times that I sometimes hope that something in her mind will switch and she'll start sun downing and get lost in the voids in her brain, just so she won't cry.  Then I feel guilty for thinking that and then I get angry that the universe or God or whoever has allowed this to happen and then I get numb because there is nothing I can do to change the fact that my mother is dieing in a slow and cruel manner.
Just this past Sunday one of the residents of mom's ward passed away.  He and mom were both C1 status and although their dementia's were different, they were very much the same.  On Saturday night at dinner, I took Eddie his soup as he could still feed himself and swallow minced food.  He didn't talk but he grunted a thank-you and I put his bib on him.  Sometime in his sleep, he peaked a fever and was unresponsive in the morning.  The staff called his family and early Sunday afternoon he quietly and peacefully passed away.   He was a former chief of his reserve so they laid his body for viewing in one of the large rec rooms.  In the afternoon at least 300 hundred people from the reserve came to pay their respects.  I did too because I knew him and  two of his daughters, Eddie and Elsie had 11 kids, and I'm some of you reading this played hockey with his boys.
Robbie and Eddie were friends and I saw Robbie sitting solemnly in the dining area.  The two of them always ate together and everyday Robbie would come to me to get Eddie's coffee for him.   Robbie plays crib everyday and everyday he would have the staff go and get Eddie so that he could watch the game.   I went over to Robbie and I asked him if he would like to go and pay his respects.  He nodded yes and I wheeled him over to the rec room.  Robbie took his friends hand and sat for a moments and then he nodded and smiled at Eddie's body, as if they had just spoken some unheard words to each other.  Robbie then motioned me to take him back to the dining room and I did.  He grabbed my hand in his hands and as he cried he mouthed the words thank you.  I nodded and left him to his grief.  Robbie is 96 and has outlived so many people in his life including a wife and children.  As I walked towards mom's room I cried for Robbie because it must be terrible to slowly lose yourself AND the people around you. One of the workers asked how Robbie was and I told her.  Deneen told me that I need to be prepared and I asked why.  She said that it can happen that quick and they prefer that, a peaceful passing not one of infection and pain.  I went and said good night to mom.
The next day when I went to collect mom I noticed that her hands were swollen and her wedding ring was tight on her finger.  I used some cream and gently removed it.  I checked her feet and ankles and they too were swollen, so much so that I removed her socks.  I went and found the nurse practitioner and she too looked at the edema.  All she could say is that she would keep tabs on it and tell the workers to monitor it and not to put socks on if it continues and she rubbed my shoulder.  Mom is a C1 resident, so no intervention will be done.
Mom discovered at age 70 that she only has one kidney.  The woman had three kids, numerous surgeries and injuries but having one kidney was not noticed until she was 70.  Edema is one of the first signs of kidney failure.  I found it odd that only days after losing a resident, mom's kidney might be headed for failure.  Having worked with renal patients and the Kidney Foundation I have seen many people pass away from renal failure.  Many of the them by choice.  When the realize that they will never get a kidney transplant or they are told that they are no longer a candidate for transplant they choose to stop dialysis.  Many that I knew had been on dialysis for 7 or more years and they have no life being hooked up to a machine 3 to 5 times a week for 5 hours at a time.  Their disease is their life and they choose to go to a hospice for their remaining days and that's all it takes, days.  One guy I knew well, Bob was his name, and he called me and told me he was stopping dialysis as he had been removed from the transplant list.  He was going to the hospice the following day and he asked if I would bring him a couple packs of smokes and two bottles of Rye, things he wasn't allowed for many years.  I did and 5 days later Bob peacefully passed away.
So as I thought about it, I said to myself that if mom's kidney is starting to fail, that's a good thing because it is a pain-free and gentle death and I was pleased.  Then moments later I was angered because mom can't choose to stop dialysis today and pass away in 5 days and then I was sad because I'm really enjoying this time we have together.
Later in the day mom and I sat in the dining area and we looked at a magazine.  There was an article about the Mayan Caribbean.  I read it out loud to mom and she looked at the pictures.  She started to cry again.  Mom loved to travel and has been to the Mayan Caribbean many times.  I started to cry again.  I cried happy tears though because I've had some good times on holidays with mom.   We met some wonderful people and I have incredible memories.  Mom cried because she is sad, she knows she will travel again.  In that moment my tears changed to sad tears.  I cried because I realized I'll never travel ever again with mom.  I cried because I feel her pain.

          This is my finger with the wedding/anniversary ring that dad had made for mom. 

 

The Dementia Diary: My birthday wish

The Dementia Diary: My birthday wish: I was born in Saskatchewan, by accident.  Mom and dad had travelled with the boys out to my grandparents farm because I was due to arrive in...