Dementia/Alzheimer’s can present itself in many different ways and I understand that your own experiences with it might be different. These are my own personal experiences and they are in no way meant to down play someone else’s challenges and feelings.
This last year’s been one that’s truly shown me how little help there is for anyone and has really brought out more anger, rage, sadness and hopelessness than I ever thought I could feel. This may seem like a bit of a rant and granted, I guess it is but I think it’s important to get it out of my system and if it can help one person feel like they aren’t alone, than it’ll be worth it.
The most common depiction or description that I’ve seen has been someone simply, passively, slowly, losing their memories, beginning to “live in the past”, or otherwise slip away quietly into their own minds. This is indeed some peoples experience and I envy that. If you have the misfortune to personally experience this disease, I would wish that you get this version.
I’ve had the fortune however, to travel the road paved by anger, confusion, hallucinations, violence, aggression, and everything in between. All of the systems and people that offer supposed help either disappear when it’s time to do so, or will find any excuse to say no. All the while, we are forced to become the help and take care of someone that we used to know. It steals them away from you and you are stuck fighting a system and themselves to be able to provide care to a stranger.
I’ve been advocating for 6 months with my provinces healthcare system to get my LO(Loved One) the care that they need. They’ve found every reason not to provide any, however. Instead the responsibility falls on the family, who are quite obviously not equipped to handle the outbursts and everything else. Every professional that I’ve seen has asked “Well has [The Province] seen them?”, “Do you have any support?”, “They need to be medicated properly”, “I’m sorry you have to deal with this” etc… The song and dance is always the same. You tell them what you need to be able to prove care. They agree on what this care needs to be, but instead, they say they won’t give you that authority. My LO can still eat and shower. So they don’t qualify for any additional support, even though their quality of life is becoming more and more non-existent and they don’t have the capacity to help themselves. They’d rather watch them rot and waste away as long as possible before they eventually have to take on this burden. Your LO is a burden, not a person in need of care the eyes of the state. If they can pass that burden to you, they will take every step to.
Even obtaining therapy for yourself so you can “take care of yourself” is at your own expense and the bill is extraordinary as the help is needed now, not a year from now when the system is able to bring you in. Your own wellbeing is a burden to the state along with your LO.
As I navigate this, my LO becomes increasingly more angry, forgetful, argumentative and mean. Not to mention the physical problems that they develop. They become unable to complete complex tasks, and start to lose the ability to string together multiple steps to say…. boil water on the stove or open a video on the computer. This brings on agitation and I need to be good at stepping in and taking over or thinking up excuses or lies on the spot or I’ll get sworn at, yelled at, physically grabbed, bullied, and demanded of. This is something that I’ve found great difficulty in doing since there is such a personal connection to them. I know this is not who they are.
As the care and stress and chaotic behaviour increases, the support base gets smaller. While I have had some amazing people step up in my life to help and share the load where they could, especially when my LO was not in the same city, there have been a lot of people that have distanced themselves and they’re happy to watch from afar while making sure their moral compass is pointing the right direction by saying “I’m sorry you have to go through this”. In my search for a group of people that are going through the same thing I am, I’ve found that this seems to be a common experience amongst those of us that were lucky enough to be given the “Caretaker” mantle.
This may be the bitterness talking, but even in the group I found, there’s some virtue signaling. They’ve all done hours of research, are active in the community, spend all of their days searching for ways to find the “silver linings” in this journey. “Lets try to get videos of them saying ‘I love you’ or videos of them laughing so we can remember them like that forever”. I still don’t know how they have time to do all of that on top of their normal lives. That time by now has passed for me as I was too busy to capitalize on those moments. When this project started, I was working in a career that I loved but took up a large chunk of my time. Any other spare time was spent trying to make my LO comfortable. Responding to requests that turned into demands as the disease progressed while also trying to maintain a relationship, exercising, hobbies, etc. I was failing at both. I didn’t cook a single meal for 4 months. My fiancé had to force food on me at night in between moments of crying and melt downs. This role was inevitably forced on me, either by the universe or by everyone else, It took everything in me not to walk away like the rest of the world seems to be.
I’ve been forced to put my career and personal ambitions on hold. It’s turned me into someone that I don’t recognize. I’ve become angry, resentful, short tempered, and bitter. While I’m working through this on my own, I have a fear that I won’t come out of this the same person I was. This is someone that I looked up to and loved very dearly and watching them leave themselves here as a shell of who they once were is something that’s pretty traumatizing to watch. This isn’t simply stealing them from us before our eyes, it’s stealing pieces of me as it goes. Those that are able to watch from the sidelines don’t have any idea and only get to see the, and I use this term VERY loosely….. good parts.
People call it caretakers burnout but it’s so much more than that. It’s burnout, it’s feeling that I’m failing them every time I run into a roadblock, it’s frustration when the system starts to run me in circles, it’s the anger knowing that I can’t stop it and exhaustion from constantly having to manage and change my life as well as adjust theirs, usually against their wants. I guess you could say I’m well into the thick of said Burnout… but I’ve said that before and been wrong. The worst part about this whole thing however, is the grieving…. You don’t just get to grieve once though. You initially get to grieve knowing what the future has in store. Then you get to grieve when they start to change. Maybe it’s when they first start doing strange things, getting lost even with GPS, starting to forget things like numbers and dates. You eventually will come to terms with that. You will understand that this is the new normal and move on. They will have good days and bad days and on those good days, they’ll be like themselves or will surprise you with kindness. After this, they’ll change again and there will be another deterioration. And you’ll now have to grieve the person that you came to accept that they are. Rinse and repeat. On top of that, if you’ve had to pause your life, you then get to grieve where you had hoped you’d be and what you hoped to be doing. I’ve been grieving for two years for my person and it’s not done yet. Every week seems to be a new form a grief that I need to come to terms with. So it’s not something that always takes someone gently or quietly. And the world treating it as some sort of rose coloured experience that eventually fades to black is not helping the matter. In fact, it’s making it harder for the complex cases to receive care, as well as the people that are caring for them to get help and support and care for themselves.
My Avocado Toasts 