Welcome, Friends
While we've never met, I say "friends" because we all share something deeply personal. The experience, both good and difficult, of caring for a loved one in their later years.
I started this journey of sharing my experiences partly as a way of processing what I was going through, and my emotions along with it. But also in the hope that, from time to time, it might offer some help to others like you. Perhaps hearing my story will let you know that you are not alone. No two journeys with this will be exactly the same, but many of the experiences and feelings will be. Know that you are not alone.
Or perhaps the help will be something more practical. Some foresight into what you might experience today, tomorrow, or weeks and months down the road. Or a few concrete tips on how we coped, or at least tried to cope, with the things that challenged us.
I recently lost one parent to some combination of Alzheimer's, dementia, and Parkinson's. She slipped away gradually and, thankfully, peacefully. By the end she had lost most of her memory, both short and long term, but she at least kept a pleasant personality, able even to laugh at herself and at what she was facing. And now my father, who had cared for her almost single-handedly until very late in her journey, even while managing his own health issues, is beginning to slip himself. First he could no longer live on his own. Then he was diagnosed with dementia, became reliant on significant community support, and is now nearing the need for full-time care.
For us as a family, it is difficult. Trying to help them, trying to comfort them, trying to help them make sense of it all. Perhaps the most heartbreaking part is the near-futility of helping a man who was so accomplished and so intelligent, a leader, someone who thrived on the intellectual stimulation of others, come to terms with the fact that he can now do little more than sit and watch television, alone. And even though my support feels inadequate, it still takes more hours than can be managed. A near-endless stream of medical appointments, delivering medication, searching for better care and better accommodation, and even having to help him leave his home and belongings behind. Managing finances. The burial of his wife of 65 years. And somehow, somewhere, providing a little bit of company through it all.
I'm deep into the journey now. If Dad left us tomorrow, it wouldn't surprise me. Equally, it might still be years away. It has all happened so quickly, less than a year, and yet it has felt the whole time like an unending challenge. I wish I had documented this from day one, for anyone who might benefit from hearing our experiences. But I wasn't ready. I'm still not sure I can manage the time, but as part of my own healing I think it's important. My parents gave so much of themselves for others, especially for me, and so making the time for this feels like part of my healing too, and therefore very important.
There is no plan, but as often as I can, I'll share some of the stories I need to tell and that might benefit others.
Everything here will be the truth. Not fictionalized, not exaggerated in any way. But I won't share names, including my own, at least for now. The story is mine, but the most difficult part of it is being lived by my parents, who cannot give their consent. And beyond just privacy, I think that if it became too specific, too tied to names and places, it might take a step too far away from what you may be going through. I never want to do that. Because while our journeys are personal, they are also related and connected.
I'm thankful for any time you take to read mine and to consider how it may, or may not, apply to you.
This is about all of us.