Final Post
The end of my story. Final Post. This was written just a few days after Mom had passed. As I read it now I feel the same emotions. May 25th, 2018 For the last few days there are times when I feel I am in a movie script. The moment
It’s over. Now what?
When the journey is over, now what? This was the biggest thing on my plate for many years and suddenly I had been fired, let go, made redundant. The team I built spun out into their own lives and we made small efforts to touch base once a year. Mom
Survival techniques.
Nature is number one on my list. I have the good fortune to live in the midst of the wilderness and it never failed to refresh and renew me along this journey. Exercise. I ran into my tears, I ran with my tears and I ran thru my tears coming
When does it end?
I wanted to know what to expect. I wanted a date. I wanted certainty that I could plan for. I wanted the nurse to tell me the day and the hour and of course that was not possible. And I did not want the end, ever. In early May I
The final chapter.
Mom lived for another nine months after that time. At this stage I thought I would have to put her in an institution but yet again we found the path to keep her at home. Her home transitioned to give her the best care. A hospital bed had been purchased
Money stress.
Where can you find money? Whose house is it any ways? My Mom had unexpected artery surgery when I was away on business for a month. My Father at this stage could not handle the care but was not ready for me to hire our own team. I ended up
Family – The good, the bad and the ugly.
The question is simple. Would you do this journey if you did not have any family? If this responsibility was solely yours? If the answer is “Yes” than accept and move on. This was ultimately my journey and I am stronger, more compassionate and the winner. No regrets. In time
Flying From Bed to Chair!
I did not believe I could manage this entire journey at home. I thought in the last year Mom would go to a home and my staff would go with her during the day leaving the nursing home to take care of the night shift. It would all work out…somehow.
A Wet Issue, Incontinence.
What I liked about caring for Mom at home was that it was all about Mom. We did not have to accommodate other patients, or rules or even safety guidelines. We did have to constantly come up with new ideas and solutions. Often that was my job. Like finding the
Letter to my friends?
Mom passed May 24th, 2018 and this spring I finally cleaned the last few boxes that I had taken from her home. I had looked at the boxes over the past years but was always too afraid of what emotional bombs I would find. There was only one. "There is
Building new relationships.
Nothing was the same. Mom was not Mom any more but she was still Mom. Okay, I am confused by that statement, how did my sister manage! My sister has Downs Syndrome and struggled with losing her Mom. But even if it is scary and sad, if you persist a
Cataract Surgery at 86?
Mom’s cataracts were slowly getting thicker and her world was getting darker. Surgery would require anesthetic which was bad for her brain. The recover required lots of drops and keeping her hands away from her eyes. And I had to make this health decision for her. After the visit to
A word about nursing homes.
In this past year there have been lots of terrible stories about nursing homes. We can hope this will lead to higher quality care and more monitoring of the homes. I want to encourage relatives to continue to advocate strongly for their loved ones. You have to be involved for
Wiping Mom’s Bum.
I shared what I was doing for my Mother with many people and they would say, “It is not your job to wipe your mother’s bum. You shouldn’t do that. You should always remain her daughter and not become her nurse.” I couldn’t have agreed more until I did it
Sleep, Please sleep!
For a week every fall Mom would often come up to visit me in my home. Dad dutifully brought her halfway and we transferred and I brought her to my home. We were in high spirits and looking forward to some mother and daughter time. Unfortunately since my last visit
Just hug me.
I live in the wilderness and despite putting stickers on the windows birds will smack into the window and fall hard onto the snow. Wings sprawled, twisted and helpless. In winter I rush out and collect them to keep them warm as the freezing temperature will kill them faster than
Travel, Friends & UBC
This trip to UBC went much better. There was no great news from the good doctor but involving Mom with UBC gave me telephone access later in her disease for some of the decisions I had to make for her. I would speak with her local GP, the local pharmacist,
Who’s money is it anyway?
Parenting parents was new for me. I never had children so this was a new experience. Money was a private adult matter that was none of my concern and I could not just tell them what to do, I had to ask. The thing with sending your parents to their
Window Shop Early!
I was not prepared for the amount of involvement. Even though I did not live with Mom she was always in my thoughts and I was almost daily solving a problem. It was hard for me to find information and support for the kind of care I was offering Mom.
Eating Challenges
Eating changes were among the first to be noticed. Mom could not tell the size of a piece she had cut and would try and stick half a piece of chicken in her mouth all at once. For someone that drilled us with table manners, this was a big change.
Mirrors and reflections
Mirrors and reflections became a source of humor and concern. Mom would greet the friendly older lady in the mirror and have a short visit with her. She would tell me what a warm smile she has. It made me feel good that she was not critical about what she
The truth is not always necessary.
There was a period where Mom would look for her babies. They had to be in the house someplace. After we had visited with a family gathering it was much worse for a few days. I would stay longer after the bigger gathering had left to ease the transition. There
Packing for Mom
Mom and I had to go to Vancouver to visit the Alzheimer's clinic at UBC. After the that appointment I thought to make the trip a bit more fun we would travel on to Victoria for the spring flowers. Packing was no longer easy for Mom so we did it
Patient Centered Care
The team worked hard to create patient centered care. It was all about Mom. When she could tell us what she liked we would do our best to make it happen. When she could no longer tell us we tried to guess and always respected the person she still was.
Drugs and Humor.
The last year, during the palliative stage, when I was not with Mom she was always on my mind. She was on very few drugs but we were prepared for whatever happened. We live in a small town so planning ahead was critical as access to drugs would be limited
The Sound of Music
There is lots of evidence to suggest when you can’t reach someone to try music. Mom made the effort to reach out to us with music. There was the whistling year. She whistled from dawn ‘till dusk. Drove my Dad nuts until the day it stopped. She would often direct
Constipation Relief Recipes
I never dreamed I would be printing a “poop type” chart so that the team had a picture for a method of communication. “A big one” meant something different to everyone on the team and I do not want to go into details. We tried teas, Metamucil, laxative powders and
Hospital Stays
Mom had other problems beyond Alzheimer’s and needed multiple surgeries on leg arteries. Along with her brain her leg arteries were past the best before date. One of our cousins’ thought it would be handy if she lost a foot because then we would not have to worry about her
Bathing Challenges.
This is one thing I think I did wrong. This is where I clung to my memories of my Mother and refused to open my brain to other ideas. Mom loved the water, she loved to swim and she loved to shower. I still took her swimming as did some
Saving Myself
I had no understanding of what I was getting into as the journey evolved. The beginning was just spending more time with Mom and taking her to specialist appointments five hours away in the city. As the disease progressed it involved advocating and fighting my father for the best possible
Possible funding options.
The prevailing attitude is that we should step aside and let the professionals care for our loved ones. I fought back hard against this thinking and found on my own a better way for my situation and my mother. We each have to find our path. There is a small
Care aid angels do exist
Angels for Mom I had a care aid call and say Mom was mad at her and calling her my name and she did not correct her and was that okay? Hmmm. I guess. After Dad died it was easier but I no longer had a watchdog. More
Nothing Happened! Wandering worries.
Being the primary caregiver and living five hours away had its own set of frustrations. I usually woke thinking, always thinking about solving a problem for Mom. I would get the phone calls that would roll my stomach and I would remind myself, “Nothing happened.” And that was the truth.
The dancing queen spreads hope!
The team was charged to find activities that Mom enjoyed. Every day had outings. Walks, the library, visits with friends, finding puppies to play with and children to hug. One of the team took Mom to a toddler reading program at the library. At first the program was not sure
The early years lost.
I am grateful that I did not run from this disease and took the opportunity to do things with my Mom while she still could. Memories of our two big hiking trips will always be with me. If my Mom had not been diagnosed I never would have made the
Doing something 100% right. My priority shift.
After being deemed palliative Mom did not die for nine months. I learned that time is finite and infinite at the same second. A friend had given me a business book on procrastination called Eat Your Frogs. One chapter exercise was to quickly name the three things you had to
Best car for mobility issues.
My Mom’s team was driving an old Dodge caravan that my brother had found after her car gave up the ghost. Lots of room for the wheelchair but it was getting harder for my Mom to make the big step into the car. Plus the car was acting up and
Trusting in the good in your care team
I lived five hours away from my mother’s home and managed a team of six long-distance. The keywords were, ‘trust’ and ‘change’. I would just put together the perfect team and there would be infighting over a toothpaste cap left off or a glass in the sink or crumbs on
Letting go of YOUR social anxieties
Mom was always friendly and warm and willing to give the best hugs. Along with her brain having a best before date that was long past so were her arteries well past their best days. She had almost lost her foot to artery disease a few years previous and we
Give great gifts to the dying!
Mom was palliative for nine months. What was she waiting for? My husband said she was avoiding seeing her husband and her mother. My friends said she never had it so good. Six women that fawned over her, massaged her and fed her big bowls of Haagen-Dazs ice cream. A