I have been home for 3.5 days, coming home is always welcomed, there is truth in ” there is no place like home”. I came home to a dog that was grieving, I was gone to long she had thought I wasn’t coming back, so she lost interest in all things, including food, the last three days of here stay with two of here favorite people where difficult, and they could not provide her with the one thing she was needing, which was me. I knew from past experience when my blue Russian cat Mootchie died that animals grieved, for Pheobe really grieved the loss of Mootchie, but I thought she would be fine, as she has stayed with Brent and Kay many many times, its like her second home, she loves them to bits, I am normally only gone for 2 or 3 days though, this trip was much longer. She is declining overall as it is and maybe thinking that I wasn’t coming home was enough to make her decide she didn’t want to keep trying. I am happy to say that since being home, she has returned to eating better than before I left, sleeping more, which she was increasingly doing anyways, but she is happy and has her moments of sheer joy bouncing around the house. Going anywhere now would require someone being here in her home know, fortunately I have no plans barring any emergencies to go anywhere until spring, hopefully by then she will have forgotten this episode. I felt terrible for Brent and Kay and the worry it placed on them as I know to how they love her.
Yesterday was an early start for me with meetings here in town, I sit on the VSAN ( Vernon Seniors Action Network), for round table meetings with community stakeholders as we work towards a age/dementia friendly community. It was a great meeting with great turnout, and I look forward to working towards a better community for all. I was tired but it was important for me to attend. There seems to be no end to the work that needs to happen. Luckily I can home feeling greatly inspired from my CCNA EPLED meetings in Toronto, such a great group, love working with them and all the researchers, some great things happening and its wonderful to be part of it.
During those meetings one of the researchers was explaining how she worries about how much “hope ” we place on things and you could tell it weighed on her heavily. It was good to hear from her perspective the impact we have on them in this regard, it is not something often talked about. This was something I said to her about it, my quote, “I will feel bad if you try and fail, but I will feel devastated if you never try.” (Christine Thelker 2022).
I explained that most of us living with dementia understand there is a great chance that many, in fact most things that have come to the attention of everyone have in fact failed. But we must remain hopeful that some ( and this particular research, Bio med), are looking beyond what was the traditional ways to try to help people with dementia to finding and looking at it through a new lens, that the one size or one pill fits all is not feasible for dementia. I wanted to reassure her not to let it weigh on her too heavy, that we the people living with dementia must have a clear understanding of the boundaries of the hope we carry and where we place it.
This event was days filled with a lot of inspiration coming from everyone who attended and in many different ways on many different levels. These are the things that help me continue to push myself to be as well as I can. Rest is required, trying to ensure everything is set up so that I can manage it. Advocacy work is hard, exhausting, exillirating, rewarding in ways I never thought or had imagined, having a purpose, value, connections. Life changing. Why would I give in to my dementia, why would I not fight to be as well as I can when I have learned and gained so much because of it? It is not a disease I would wish on anyone, it causes many challenging, difficult days, but the blessings far outweigh those at least to this point. the end stage will be the end stage, hopefully I will be gone before I have to live that piece for now I am beyond grateful.
The other great thing that happened and this was the big one, meeting Janet in person, after becoming friends for over 4 years, to having her travel to Toronto and then to Niagara Falls with me, (Janet lives with Alzheimers), to help me in my quest to honour my mom and sister. What a beautiful gift to my life she is, Kind, fun, generous and I absolutely can never thank her enough for all she has brought to my life, not only during the trip but over the last 4 years. I hope we get the opportunity to spend more time together in the future and share more memorable moments. I came home feeling a great sense of peace finishing something that was important to both my mom and my sister and Janet was a huge part of helping me through that. We never know where life is going to take us or what it is going to present us with, but my dementia has brought many great people into my life, that I would have otherwise never had the opportunity to know. More to be grateful for. I have been blessed throughout my life to know so many great people, sometimes friends come and go, sometimes, life itself creates those things to happen, it doesn’t mean those people are any less important today than they were then, life is just ever changing, just like every day is different living with dementia. So I hope I can always just be grateful for what is, what was and what will be.
A reminder if you know anyone living with dementia, get involved, research is a wonderful place to be involved. Reach out if you would like to learn about opportunities in how you can be involved.
Off to Physio have a great Thanksgiving to all those in the USA and to everyone everywhere remember to spread kindness, and enjoy the day you are in and may the weekend be filled with blessings for you all.