I've been lurking and contributing in these forums for seven years now, so I thought, given how much they have helped me, it would be the right thing to give back by providing my testimony.
My mother was diagnosed with primary progressive aphasia and frontotemporal dementia 7 years ago.
They don't tell you that when people get diagnosed, but it's the most painful, harrowing event one can go through, and I've been through a lot, including young family members dying in accidents. Nothing even begins to compare. Entire family units collapse on themselves. Divorces are rife. Carers enter depression.
I know so many of you wonder, "How can it POSSIBLY go on for even one more minute?". I know you've witnessed what happens to the human body when the frontotemporal cortex disappears completely. There are no words. We feel helpless in the face of overwhelming pain, and then we go home just to feel guilty because, after all, "we're not the ones suffering'. It's the most unfair, relentless, mind-numbing, atrocious thing that I can imagine happening to anyone.
And the "advice" we get from others. "Why do you put yourself through that? Why did you take this responsibility on board?". Because it's my mother, evidently. Don't fall for the gaslighting.
For seven years, due to a legal loophole in the French system, I didn't get guardianship despite having done all the paperwork. So i found myself having to cover every bill, every medical expense, and as her only surviving family member, put my entire life on hold to support her through this harrowing disease. Not only I had to watch my mother disintegrate in front of my eyes, but my career and finances are distant memories at this point.
As a nurse friend of mine told me "The most unfair part of this disease is that as long as the heart beats, life continues, regardless of the condition the person is in".
Three months ago I was told she had taken a turn for the worse. I was so sad to see that even though the care home was modern, clean and well-staffed, nothing, NOTHING could take away the pain. Nothing. I felt horribly guilty to even have her placed there; I felt powerless. She kept being transferred from care home to the hospital and back due to respiratory problems. She coudln't eat. She was 100% paralized, her greatest fear as my grandpa was quadiplegic and she watched him suffer and die in a time when care wasn't as widespread as it is today. She coudln't speak, draw, or do anything for that matter. Since then I am grateful everytime I lift a fork - this illness is a thief, and it robs your loved one of EVERYTHING, piece by piece. And you can only watch.
This morning, she was due to receive a visit from a friend I have on site who takes over for me when I can't be at the care home. The staff prevented her from entering the room, and I received the call - a doctor was on his way to issue a death certificate. I'm grateful to God that it appears she did not suffer, and her heart stopped beating. I'm not a doctor and not pretending to be one, but I'm grateful the alternatives I feared so much didn't happen.
To all those who are going through this living hell, you are not alone. I have two pieces of advice people rarely talk about:
Firstly, Please please, please if you're reading this and the person you love is still in the early stages, organize for a respectful, responsible handling of the finances well ahead of time so you don't end up like me. Especially if international matters are involved, i know for a fact that 'foreign care homes' are popular these days. You don't have to feel guilty - you're doing more than most people already. As a psychologist once told me, "at one point you will face a choice: one body, or two". Do not underestimate the impact this illness can have on you or your loved ones.
Second, I know it's extraordinarily difficult, but organize for medical care well well in advance. Not all countries offer palliative care. Read this again. I know people who suffer from this illness can be combative, but in my pig-headed battle to give my mother the 'best possible', I forgot to think about the inevitable end. Things could have gone even more sideways for my mother. It's critical, and i mean absolutely critical that you take control of the finances, or else you'll be stuck in this absurd loop where authorities will claim you need 'paper xyz' to get guardianship, but you can't get it because your loved one cannot, clearly , have any self-agency.
To my Mum: I love you. I hope i did the best I could for you. I hope you didn't suffer. You can rest now. I love you.
My mother was diagnosed with primary progressive aphasia and frontotemporal dementia 7 years ago.
They don't tell you that when people get diagnosed, but it's the most painful, harrowing event one can go through, and I've been through a lot, including young family members dying in accidents. Nothing even begins to compare. Entire family units collapse on themselves. Divorces are rife. Carers enter depression.
I know so many of you wonder, "How can it POSSIBLY go on for even one more minute?". I know you've witnessed what happens to the human body when the frontotemporal cortex disappears completely. There are no words. We feel helpless in the face of overwhelming pain, and then we go home just to feel guilty because, after all, "we're not the ones suffering'. It's the most unfair, relentless, mind-numbing, atrocious thing that I can imagine happening to anyone.
And the "advice" we get from others. "Why do you put yourself through that? Why did you take this responsibility on board?". Because it's my mother, evidently. Don't fall for the gaslighting.
For seven years, due to a legal loophole in the French system, I didn't get guardianship despite having done all the paperwork. So i found myself having to cover every bill, every medical expense, and as her only surviving family member, put my entire life on hold to support her through this harrowing disease. Not only I had to watch my mother disintegrate in front of my eyes, but my career and finances are distant memories at this point.
As a nurse friend of mine told me "The most unfair part of this disease is that as long as the heart beats, life continues, regardless of the condition the person is in".
Three months ago I was told she had taken a turn for the worse. I was so sad to see that even though the care home was modern, clean and well-staffed, nothing, NOTHING could take away the pain. Nothing. I felt horribly guilty to even have her placed there; I felt powerless. She kept being transferred from care home to the hospital and back due to respiratory problems. She coudln't eat. She was 100% paralized, her greatest fear as my grandpa was quadiplegic and she watched him suffer and die in a time when care wasn't as widespread as it is today. She coudln't speak, draw, or do anything for that matter. Since then I am grateful everytime I lift a fork - this illness is a thief, and it robs your loved one of EVERYTHING, piece by piece. And you can only watch.
This morning, she was due to receive a visit from a friend I have on site who takes over for me when I can't be at the care home. The staff prevented her from entering the room, and I received the call - a doctor was on his way to issue a death certificate. I'm grateful to God that it appears she did not suffer, and her heart stopped beating. I'm not a doctor and not pretending to be one, but I'm grateful the alternatives I feared so much didn't happen.
To all those who are going through this living hell, you are not alone. I have two pieces of advice people rarely talk about:
Firstly, Please please, please if you're reading this and the person you love is still in the early stages, organize for a respectful, responsible handling of the finances well ahead of time so you don't end up like me. Especially if international matters are involved, i know for a fact that 'foreign care homes' are popular these days. You don't have to feel guilty - you're doing more than most people already. As a psychologist once told me, "at one point you will face a choice: one body, or two". Do not underestimate the impact this illness can have on you or your loved ones.
Second, I know it's extraordinarily difficult, but organize for medical care well well in advance. Not all countries offer palliative care. Read this again. I know people who suffer from this illness can be combative, but in my pig-headed battle to give my mother the 'best possible', I forgot to think about the inevitable end. Things could have gone even more sideways for my mother. It's critical, and i mean absolutely critical that you take control of the finances, or else you'll be stuck in this absurd loop where authorities will claim you need 'paper xyz' to get guardianship, but you can't get it because your loved one cannot, clearly , have any self-agency.
To my Mum: I love you. I hope i did the best I could for you. I hope you didn't suffer. You can rest now. I love you.
