Seems like a silly question right?, yet over and over we hear from people living with dementia how family and friends disappear from their lives. Often we hear it said followed by, “ but I understand”, and “it’s Ok, I get it”. We accept their departures from our lives, like we expect it, and for many it does become the expected and somehow expected outcome after a diagnosis. Sometimes people stick by for a time, sometimes others step in and step up to fill the void, to ensure connection and the importance of not becoming to isolated doesn’t happen. Often we don’t know, understand and can’t no matter how hard we try understand the departures. People are hurt by these departures, but rarely do or say little except that they understand, and that it’s ok.
I have learnt though that people come and go, but we shouldn’t chase after them, leave room for them to come back into life it lets itself to that, if not be thankful for the time and enjoyment you had, cherish those and open yourself to let new people in, you may enjoy some wonderful new relationships that will go the test of time. This holds true if you have dementia or not.
I have been fortunate that through my work and affiliation with Dementia Alliance International, and with various research groups like the CCNA ( Canadian Consortium Neurodegeneration in Aging, AgeWell, and others have gifted me with friends around the globe, and providing opportunities to meet in person with many helps keep me connected, even though for the most part still isolated. Without having the opportunities to work within these and meet others, I would struggle to have purpose or hope at this time. They are a life line.
They have been, kind, caring, respectful, as I am navigating the loss of my sister, which has taken the wind out of me, but their willingness to be there in any way they can, the willingness to give me time and space, yet ensuring they are there if need be, speaks volumes to the depth and importance and strength of those relationships. I am grateful for all of them.
Back to the title of this blog, I sat here with an address book and pen and paper, the loss of my sister has me reading in many ways, thinking about all the losses, I was soon to discover, that I now have more people on the other side, than I do in the here and now. I have no idea if it matters, except to me. I am ungrounded at the moment, I feel like I’m holding my breath, gasping for air. I will get there, I will be gentle with myself and I will get there.
There is many things of concern in the dementia world, how and why many organizations collect huge $$$ every year, but very little ever actually makes it to being used in ways that has a positive impact for those living with dementia, it’s like 30 years of advocacy has fallen on deaf ears. I believe we have to fight to have a measurable way to see how they are doing and everything they do should have to be reviewed by an independent group of people living with. They should also be required to set aside a certain amount to fund bringing people with lived experience together. I believe more input from those with lived experience to make sure grants are going out and do and for things that will actually be good and have a positive effect on those with lived experience. I believe it’s time we hold them accountable. Everyday there is reports of funds being misused throughout many organizations ,it is time to make them and their people accountable, they are collecting money on the assumption it is going to help people with lived experience… its time.
I have mixed up days, dates, my medications and appointments in fact today I thought it was Sunday, wrong, it’s Monday evening, pills missed, others taken to often, nitro patches forgotten to put on, other times forgotten to take off, the other day I discovered I had three on. Oh well, I will get on track, some days are better than others. Life is and can be hard and down right cruel, but it can also be beautiful. The sadness will come and go and I am pointing myself in the direction of finding my joy again, finding my peace, finding the beauty.