My mom, Shirley, was a tough old bird. She knew we called her that and would laugh about it.

She was born in St. John’s, Newfoundland in April of 1934, so she was a “Newfoundlander” in every sense of the word. She had a great sense of humor, could cook up a storm and nothing was too much trouble for her to do for anyone she cared about.

She survived Cancer in 1966. She said it was because no one was gonna take her away from her little girl, that little girl being me. She also had a heart attack and was given a stent implant, had 3 stents put in one of her legs and lost two toes to gangrene….like I said she was a tough old bird. She had a long history of vascular problems due to her love of smoking and had 8 surgeries to correct these problems. Mom ended up having 3 of her vascular surgeries here in British Columbia and I cared for her during these events, I learned more about nursing than I ever wanted to. I thought at that point when she recovered from these events that everything would be ok; she stopped smoking and was looking forward to a peaceful existence here with me and my husband Keith and our 6 cats. We have no children, everyone asks.

In September of 2001, just after the terrorist attacks on New York city, I went to visit her in Rochester, NY where she had resided for many years. I brought her home to British Columbia with me. We hadn’t lived with each for 15 years so it was wonderful to have her around, I thought we would have many years together as it turns out we had 2 years, one month and 7 days, not that I’m counting at all.

In March of 2003 Mom’s voice started to sound funny and she would choke on her food sometimes, she also lost some of the use of her right arm and hand. We thought maybe she had a stroke; indeed she did have a mini-stroke. We saw the neurologist in July and after a bunch of tests he figured that along with the stroke she probably had  “pseudo bulbar palsy”, I had no idea what this was. At this point we still didn’t know for sure what was wrong. I had researched pseudo bulbar palsy on the Internet and found out about ALS. I knew then that our time was limited. An appointment was made to do an EMG test, however we would have to wait until October 24, 2003 for this test.

Mom’s decline was rapid to say the least. When she arrived in Vancouver in 2001 she weighed over 175 pounds, she was five foot nothing, so as we say back home she was a big healthy girl. We watched her fade away to less than 80 pounds.

She lost the ability to speak altogether around August and communicating was very difficult. We tried getting her to write things down, but the stroke had made that hard as well. It was very frustrating for her. She could only eat soft food cause of the fear of choking, and she really didn’t enjoy that as she was a steak and potatoes kind of girl. She started falling while walking around the house so we got her a walker, which was a big help. She also had a lot of pain from her vascular surgeries on her legs so she was on Dilaudid for that. It was so sad to see her suffer so much.

We arranged for a speech pathologist, occupational therapist, and physical therapist to come to the house to see her to try to make things easier for her and to help keep her comfortable. 

As time went on we could see her fading away, but for the most part she kept up her spirits, we could still make her laugh and smile. She did cry a lot sometimes and I’m ashamed to say I didn’t always deal well with that. I understand that part of the disease is lack of impulse control when it comes to crying or laughing. It was heartbreaking to see her cry.

On October 20, 2003 I brought her to hospital in an ambulance cause she was having chest pains that we couldn’t get under control with nitro, that was the beginning of the end so to speak.

ALS was confirmed with an EMG on October 24, 2003. We had to break the news to her that she had this disease and that there was no cure for it. She took it very well. The part that bothers me so much is that she couldn’t speak and she must have had a lot of questions, a lot of fear, maybe she just wanted to say “I love you Keith and Sonia” but she couldn’t express herself other than to smile or cry. On the advise of the doctor’s at the hospital we moved her to St. Michael’s Hospice, as they thought it would be a nicer environment for all of us to spend the 3 months they though she had. The nurses and volunteers at the Hospice were amazing; they provided great care for my mom and helped me through some really scary days and nights. My mom’s greatest fear was that we would put her in a nursing home, she made me promise that I would never do that, I didn’t break my promise. When she went to the Hospice I stayed day and night with her, Keith stayed every night with us for 3 nights up until the end.

She died peacefully on November 8, 2003, at 5:30pm, in the presence of those who loved her most, me and Keith. She held my hand as she left this world and went to a better place.

There were times when I was so tired, frustrated, scared and overwhelmed by her needs and sometimes her demands, but if I could do it over again I would, this time I would just do it better.

It was an honour and a privilege to care for my mom and to be with her when she died. I have a nasty hole in my life now and don’t really know how to fill it, but I do take comfort in knowing that now she is not suffering and is at peace.

I love you and miss you mom. 

Sonia

God saw you getting tired
When a cure was not to be
So he closed his arms around
and whispered, "come to me."

You didn't deserve
what you went through
And so he gave you rest
God's garden must be beautiful

He only takes the best
So when we saw you sleeping
So peaceful and free from pain
We could not wish you back
To suffer that again.

"Fate loves the fearless." James Russell Lowell