One of the hardest things about caring for my mother and my daughters, is that feeling of isolation and exhaustion. Reaching out to others is difficult when you have no more energy to spare after a day spent trying to juggle work, children, regular daily commitments and care-giving. In between all of that you can add to the mix, a daily need to research and educate others – otherwise known as advocacy. Resources can be hard to find, so this is why I want to share Caring Bridge, a free website, that allows you to create a blog and invite friends and family to stay connected.
Some of you know the story about my Mom. She was diagnosed with Alzheimer’s disease, more accurately dementia, in 2011 after months of chaos, confusion, escalating symptoms and emergency room trips. My Mom was a school teacher for 35 years and then she retired. She divorced when my brother and I were both very little and my father has not been a part of our lives since. For 15 years after her retirement my Mom lived happily on her own in the city where she taught for three decades. Those of you who are children of school teachers, know that everywhere you go, your school teacher parent encounters a walking, talking, memory of the legacy they have left behind. Every single day of my childhood, my Mom ran into someone she knew, a child she had taught or a parent who revered how well she had taught their child. This was her identity and her passion for so many years. It was to us, as children, slightly comical that my Mom ran into “her kids” everywhere. Sometimes we didn’t know whether she was talking about us, or her students. Each one of her students were like her own children. She loved them all and left an impression on many. She was revered. She was respected. She was loved. She had family – several brothers, sister-in-laws, nephews and nieces. She cared for her own mother for many years. My brother and his family made a life in Toronto. I made a life with my family in Kitchener, and then London. We were close and that was good for several years.
Roughly three years ago my grandmother passed away, and an uncle died shortly before that. Then my Uncle Doug, my mother’s closest brother, a kind and caring man, who fought a long, hard battle with cancer died. A couple of her best friends moved to retirement homes or senior’s apartments closer to their children. Although my mother had memories, friends and a world of history in Guelph, she was getting lonely. One of her friends called one day to say she was worried about my Mom. She was losing things and she seemed to hallucinate once or twice. My brother and I tried to maintain her in her own condo for a bit longer but one night when she called police fearing people were in her home, she was taken to the hospital emergency room and everything changed. It was apparent to all that my mother could no longer drive, and she could no longer stay in Guelph.
I have written about that horrible summer of 2011 when everything was chaos and my mother was hospitalized. And I have written about us moving her to my city of London to be closer to us, so she can visit her grandchildren, my daughters, and she can rely on me to attend medical appointments, pay bills, and support her physically and mentally. What I haven’t written about is the sadness that followed. The devastating realization that everything changes on a dime sometimes and the tragic reality of friends falling away. My Mom adjusted stunningly to her new home once she was assessed, treated and given proper medical care. She loved the comfort that came from being near us. She loved the fact that people in her new retirement home were welcoming and always seeking to engage her in square dancing, choir, or movie night.
One of my biggest heartbreaks during this entire process has been watching as some of my mother’s friends, and even family members, fell away. Maybe they didn’t know how to react to her new diagnosis. Maybe they didn’t know what to say. Maybe the distance of two hours down Highway 401 was just insurmountable when they already had busy lives. Whatever the reason, it saddens me for everyone. My brother turned the sadness to anger and has little use for the friends we tried so hard to engage by phone and keep informed that summer when she first moved. I am just sad, because if I put myself in her shoes, I think my heart would be battered knowing important friends stopped connecting. For instance, I know she misses one young teacher she mentored for 10 years and it is sad not to see her hairdresser anymore, the one she went to for 30 years, even though she still writes letters. It is palpable the silence that follows on days when I ask if anyone called.
My Mom has gone on to make new friends at 75 in the last act of her life. She remembers their names most of the time and she enjoys being in the present. It is a weight lifted from all of us that she settled so well in her new home. There are so many people I still want to keep engaged in my mother’s life. I accept that it’s my role as caregiver to build those connections again and reach out to her past to keep everyone active, informed and healthy.
Finding Caring Bridge has been such a welcome and incredible opportunity. I am relieved and happy and feeling supported just by building this small important bridge for friends and family to use on line. Caring Bridge is a completely secure space with multiple applications. For my Mom, I have set up a page that is her story, her journal, written by me and updated as often as I want with pictures and blog posts. Sometimes I write about my Mom on my blog thriftymommastips.com, but the difference here is the bridge part. Caring Bridge is a patient web site that allows you to create a blog. Guests that you invite by email can then be involved in your life. They can sign in on the guest book, or leave messages, read updates and check pictures. Until now I have been sending my pictures as status updates on Facebook. That’s not extremely personal and I can’t get as detailed about my Mom’s progress or challenges as I might like to do. Caring Bridge free web site is just what I have been looking for as a caregiver resource. It’s one of those brilliant ideas that make life richer for caregivers, patients, family and friends.
In addition to that blog and support bridge function, there is also an incredible support planner and meal planner function too. My daughter has special needs also, and I write about that here a lot also. I have even posted entirely on the fact that when your child has special needs finding a babysitter is like high level detective work. You can’t simply leave a child with special needs with your neighbour’s 15-year-old because frankly she’d run for the hills. There is so much more stress and work involved in caring for a child with a complex disability than an average family might experience. The Support Planner allows me to register my family and input a date or function as an event we need help with. So, for instance on December 5th if we have a work Christmas party and we need a caregiver or respite worker to watch Ainsley we could post it and then invite family members to view and potentially offer help. The support planner is an on line calendar that helps friends and family coordinate care and organize helpful tasks, like bringing food, offering rides, taking care of pets and other needs. The tool also lets me input a day on the calendar – say every Saturday – and request help with cleaning the house. The meal planner would be super helpful for those going through cancer treatment or for families with a member who just went through surgery.
I know I may not be able to recapture all the friends that have fallen out of my Mom’s regular daily routine. But I can try to reach out to them through Caring Bridge. For those who have been with us every step of the way helping her adjust, supporting her through a terrible diagnosis, showing their love daily or weekly with phone calls and visits, this is a way to stay involved as long as possible.
Caring Bridge sites are personalized web sites where you can post health updates to connect with family and friends and keep them updated during a health issue. It is a safe place to share daily thoughts and experiences. People are able to leave supportive messages and well wishes, regardless of whether you are recovering from surgery, living with chronic illness, caring for an elderly parent or anything in between.
Caring Bridge sites are protected.
Users set their personal preferences.
There are multiple settings for privacy.
Personal data is not sold.
There are no ads.
Caring Bridge sponsored this post. The site is a great tool, for so many. I am thrilled to share it. My opinion is my own and I hope you will all find Caring Bridge a great resource as I have.