Hi, my mother is FTD/nfPPA for the last 4 years, official diagnostic as 'Alzheimers' came in 2018.
I'm the only son and the only person she has in the world. I'm not a doctor and i had to learn how to care for her (she stayed with me for a year before being moved to a facility). This are things I've learned they don't tell you bout in the books. I made a lot of mistakes, but I also did a lot of things right. I hope you benefit from it. I'm posting here just 'to give back' to the community which has helped me so much over the last 4 years.
I tend to speak honestly and the below might be a bit 'brutal' but i prefer that approach to doublespeak and patronizing. Oh and the below are OPINIONS , not necessary facts. Your mileage can and will vary.
a) the whole 'I'd rather be dead' thing is nonsense
...at least in the early stages. My mother was a nurse, and ironically spent most of her career caring for people with alzheimer's. "I'd rather be dead" is something i heard from her a lot, and when i went through her house I found a 'suicide' kit she had hidden and mercifully forgotten or decided to not use. Based on its content she wouldn't have missed.
Here's why it's nonsense: sure its been up and down and recently more down than up. But me and her were estranged almost until her disease hit. She got her son back. I designed her first year with us as 'bucket list' challenge and took her to really nice holidays. At the time she could still enjoy it. I think we did more in a year together than we did in our lifetimes.
And so far, her personality has changed radically. She was a bitter, angry woman still upset about her divorce. She was obsessed with her health, had unnecessary surgery. She was not well liked by well, many people. After AZ, she became this sweet grandma everyone loves to have. She makes friends everywhere she goes despite the PPA. She will never have to worry about tax, money or anything of the sort again as i took over everything. For all intent and purposes, her 'overall' life post diagnostic is undoubtedly 'happier' than pre-diagnostic. She smiles the sweetest smile, most of the day.
Evidently everyone's mileage will vary, but the above is true for my mother. It might not last - in fact it's certain it won't last... but what we shared in the last 4 years is real and was really touching and very precious. These will stay with me and her forever.
b) this disease is going to take a toll on EVERYONE, not just the patient.
... and the carer gets it in the neck first and foremost. So if you don't have a therapist, get one now, because 'people' not exposed to this disease will not understand what it's like and you won't get the support from them, at least not the one you might expect, in fact you might get really , really frustrated by other people reactions. I was also shocked by the lack of respect from some people, either acting as if she was idiotic or mentally r******d , people acting like vultures ('so what will happen to her car...'). People crying in my room while i do important paperwork, as if i wasn't difficult enough for me. People not caring at all "it's just a disease, we all die one day". In other words - get ready to become strong. Get ready to be disappointed in others. But also expect some good surprises along the way - i received some great support from the most unexpected people, like the local butcher. People... will be people.
Second, if you're married or have an SO, bring them *in* the discussion ASAP. Talk. Talk some more. Your behaviour will change. When i was obsessing about the disease at the beginning my wife thought i lost my mind. My own doctor, looking at my blood pressure, told me I had a choice: take it easier or , to quote him, 'there will be 2 bodies instead of one' (yes my doctor speaks like that). If you need a marriage counselor, get one. EARLY. My mum disease almost led to my divorce. Don't let that happen to you. If you're in pain, say it to your SO. Don't expect them to read minds. Don't expect them to handle this or have this hit them as hard as it hits you.
Third, kids. If you have younger people around, bring them in the discussion , too. Everyone wants to feel useful. The person suffering from AZ wants to feel love. It's a no brainer - there's no reason to be 'scared of grandma'. My son in particular played an important role in reassuring my mother when she felt anxious.
c) don't worship medical professionals like gods. They make mistakes. Fight for your loved one's care.
I can't count the errors made by various doctors over the years. I caught many prescriptions mistakes. I counted even more mistakes from the nurses in charge of administering said prescription medicine. Count everything. Recount everything. READ READ READ online, there are tons of university papers on google scholars that will open your mind to new techniques, ranging from brain stimulation to novel prescriptions. At least learn about them so you have OPTIONS. It's not about overdosing your loved one - it's about knowing what they are given, why, and what else they could be given.
I had doctors wanting to take my mum 'off memantine because it's useless', when there are documented cases of patients suddenly changing for the worse when that's pulled. It's not the 8 euros or so that thing cost that's going to burn in a hole in your pocket anyways (see more on money below). Most doctors i had were erring on the side of NOT prescribing the usual alzheimer drugs, because they thought i was going to use social security and must be on a 'tight belt' regime. Once I explained i'd pay cash, the prescriptions came out. Go figure.
I had nurse giving her 2x the amount of steroids for her sarcoidosis, triggering a run up to a stroke. Your mum isn't their mum, they will never care for her like you would. Remember at the same time you rely on these people to litterally save your mum life when the time comes. If they can do something better, don't ruminate - just tell them. Work with them.
Don't' fight them either. Get them on your side. On your loved one side. Make them see the human.
I'm the only son and the only person she has in the world. I'm not a doctor and i had to learn how to care for her (she stayed with me for a year before being moved to a facility). This are things I've learned they don't tell you bout in the books. I made a lot of mistakes, but I also did a lot of things right. I hope you benefit from it. I'm posting here just 'to give back' to the community which has helped me so much over the last 4 years.
I tend to speak honestly and the below might be a bit 'brutal' but i prefer that approach to doublespeak and patronizing. Oh and the below are OPINIONS , not necessary facts. Your mileage can and will vary.
a) the whole 'I'd rather be dead' thing is nonsense
...at least in the early stages. My mother was a nurse, and ironically spent most of her career caring for people with alzheimer's. "I'd rather be dead" is something i heard from her a lot, and when i went through her house I found a 'suicide' kit she had hidden and mercifully forgotten or decided to not use. Based on its content she wouldn't have missed.
Here's why it's nonsense: sure its been up and down and recently more down than up. But me and her were estranged almost until her disease hit. She got her son back. I designed her first year with us as 'bucket list' challenge and took her to really nice holidays. At the time she could still enjoy it. I think we did more in a year together than we did in our lifetimes.
And so far, her personality has changed radically. She was a bitter, angry woman still upset about her divorce. She was obsessed with her health, had unnecessary surgery. She was not well liked by well, many people. After AZ, she became this sweet grandma everyone loves to have. She makes friends everywhere she goes despite the PPA. She will never have to worry about tax, money or anything of the sort again as i took over everything. For all intent and purposes, her 'overall' life post diagnostic is undoubtedly 'happier' than pre-diagnostic. She smiles the sweetest smile, most of the day.
Evidently everyone's mileage will vary, but the above is true for my mother. It might not last - in fact it's certain it won't last... but what we shared in the last 4 years is real and was really touching and very precious. These will stay with me and her forever.
b) this disease is going to take a toll on EVERYONE, not just the patient.
... and the carer gets it in the neck first and foremost. So if you don't have a therapist, get one now, because 'people' not exposed to this disease will not understand what it's like and you won't get the support from them, at least not the one you might expect, in fact you might get really , really frustrated by other people reactions. I was also shocked by the lack of respect from some people, either acting as if she was idiotic or mentally r******d , people acting like vultures ('so what will happen to her car...'). People crying in my room while i do important paperwork, as if i wasn't difficult enough for me. People not caring at all "it's just a disease, we all die one day". In other words - get ready to become strong. Get ready to be disappointed in others. But also expect some good surprises along the way - i received some great support from the most unexpected people, like the local butcher. People... will be people.
Second, if you're married or have an SO, bring them *in* the discussion ASAP. Talk. Talk some more. Your behaviour will change. When i was obsessing about the disease at the beginning my wife thought i lost my mind. My own doctor, looking at my blood pressure, told me I had a choice: take it easier or , to quote him, 'there will be 2 bodies instead of one' (yes my doctor speaks like that). If you need a marriage counselor, get one. EARLY. My mum disease almost led to my divorce. Don't let that happen to you. If you're in pain, say it to your SO. Don't expect them to read minds. Don't expect them to handle this or have this hit them as hard as it hits you.
Third, kids. If you have younger people around, bring them in the discussion , too. Everyone wants to feel useful. The person suffering from AZ wants to feel love. It's a no brainer - there's no reason to be 'scared of grandma'. My son in particular played an important role in reassuring my mother when she felt anxious.
c) don't worship medical professionals like gods. They make mistakes. Fight for your loved one's care.
I can't count the errors made by various doctors over the years. I caught many prescriptions mistakes. I counted even more mistakes from the nurses in charge of administering said prescription medicine. Count everything. Recount everything. READ READ READ online, there are tons of university papers on google scholars that will open your mind to new techniques, ranging from brain stimulation to novel prescriptions. At least learn about them so you have OPTIONS. It's not about overdosing your loved one - it's about knowing what they are given, why, and what else they could be given.
I had doctors wanting to take my mum 'off memantine because it's useless', when there are documented cases of patients suddenly changing for the worse when that's pulled. It's not the 8 euros or so that thing cost that's going to burn in a hole in your pocket anyways (see more on money below). Most doctors i had were erring on the side of NOT prescribing the usual alzheimer drugs, because they thought i was going to use social security and must be on a 'tight belt' regime. Once I explained i'd pay cash, the prescriptions came out. Go figure.
I had nurse giving her 2x the amount of steroids for her sarcoidosis, triggering a run up to a stroke. Your mum isn't their mum, they will never care for her like you would. Remember at the same time you rely on these people to litterally save your mum life when the time comes. If they can do something better, don't ruminate - just tell them. Work with them.
Don't' fight them either. Get them on your side. On your loved one side. Make them see the human.
