My Caregiving Story: The Most Wonderful Sadness

 

Frankly, I was planning to wait until Mother's Day to post this. Today is our Canadian Thanksgiving, and for some inexplicable reason I feel compelled to share this now. So here it is. It's based on my speech, when I am invited to speak as a Facilitator, at the Longterm Care Homes in Toronto.

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In 2005, at the age of 89, my mother fell and broke her wrist. She was living on her own in Montreal, so my husband Vince and I brought her to Toronto to live with us. The doctors were impressed with how quickly she healed, but over time we discovered that her forgetfulness and her lack of appetite were of greater concern, and that it was related to Dementia. We had a steep learning curve, and it didn't help that I was in complete denial about it for months.

When she was summarily dismissed from a nearby Community Centre for needing too much care for their daily programmes, I threw a major fit. I was insulted when they suggested she join another local organization catering to Alzheimer/Dementia folks. Because I desperately needed a daily respite for a few hours, we tried it out, and to my surprise and relief, she thrived. She absolutely loved it there. They’d send a van to pick her up and bring her home, and she went about 3 days a week. She made friends with her peers and the excellent staff, and I humbly and slowly, came to understand about my mother's condition.

The most troubling part was her adamant refusal to eat much, if anything. I didn't want her to starve herself to death, and my nerves were seriously frayed from worry as never before. (One day when she was very ill with a fever, I accidentally nuked her slippers because I forgot to separate them from their microwaveable inserts, and placed them into the microwave!) At that moment I broke down, realizing I was seriously in over my head, and if I kept going the way I was, I wasn't going to be of much use to anyone, especially Mom.  So I began researching Nursing Homes, also called Long Term Care Homes.

Now one thing that was a lifesaver and I can't recommend this strongly enough, is the Respite Program that is offered by some nursing homes. About once a month Mom would go for a few days, and she loved it, since it reminded her of sleep away camp and she was a very social person. In this manner, in the space of a year, she experienced a few different places and we all got to familiarize ourselves with the culture within Nursing Homes.

Being a writer/researcher, I really did my homework, and found one that 2 social workers from different organizations told me THEIR families lived in, and frankly, I was impressed - especially after the tour, so that's where I made sure Mom was placed. (It was one of only two places I was willing to consider.) And when it was time for mom to transition from our place to the Nursing Home, in February 2006, it went extremely smoothly, and she adapted easily. Once again, the staff loved her (because she was pert and witty) and she made friends with peers there as well.

While mom lived with me, for about a year, before she was accepted at the LTC home, I researched and utilized a myriad of available resources, from a physical therapist who worked with mom while her fractured wrist was healing, to caregivers from an agency, who came by once a week to give mom showers. I was lucky, and discovered a lady in the neighbourhood who is also a professional caregiver. She became invaluable to us. Mom really liked her, and she was just great at supplementing the weekly showers from the agency, and spelling hubby and me for a rare night out.

About 6 months after mom moved into her nursing home, I discovered the Family Council. I was so relieved to meet other family members in the same boat as me. At my first meeting, I was voted in as VP of Communications, and enjoyed every moment participating in that position for the 4 years mom was there. It was a wonderful way to bond with other family members and to learn about the inner workings of these facilities. I invited the Guest Speakers, such as department heads, medical staff, Alzheimer’s specialists, vendors, and grief counsellors, etc., to visit our group and we learned so much from them.

Sadly, eventually mom’s heart gave out and she passed away at the age of 94 in 2010. I stepped down from our Family Council and shortly thereafter joined the umbrella organization, The Ontario Family Councils Program where I am a volunteer Facilitator with 8 Toronto LTC homes under my jurisdiction. I've manned information booths at educational trade fairs and been the Guest Speaker at other Family Councils meetings and events. So in this way, I believe I'm honouring both of my late parents to the best of my abilities.

It should be noted that for most of my life my mother and I had a very difficult, contentious relationship, which ended up with my being placed into the Foster Care System from the age of 11 (just after my Dad moved to the United States) until I was 18. My point is that it wasn't until she developed Dementia, and I stepped up to the plate, that our relationship turned around. Several of my friends still don't understand how I could do this knowing my painful childhood history. But it was a surprisingly easy decision because initially I did this for me. I felt that I needed and deserved to have a mom who was well taken care of, who knew that I loved her, and that I had her best interests at heart.

So the very thing I was in denial about, the dreaded Dementia, in our case was a healing thing. Who knew, that for us to finally have a truly happy, healthy and positive relationship, I was meant to step into the parenting role, advocating on her behalf? And believe me I am so glad I did. I miss her so.

Centre photo: Mom was moved to happy tears when we threw a surprise party for her 90th birthday at her favourite eatery - The United Bakers Dairy Restaurant. (The staff were amazing to us, and we were especially thrilled when her favourite waitress, the lovely Maria, was there for her. Not pictured, just sharing that tidbit.)

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The Most Wonderful Sadness

When someone has the courage

To confront the past

To embrace it wholly

The experience while it lasts

To untie the knots

Of all the years

Then retie them in a bow

So when it's really over

You truly know

The gladness of the most wonderful sadness

I know.

© Joyce Singer-D'Aprile