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Some tips I've learned in the last 4 years - that aren't' in the info pdfs.

rmabo

Registered User
May 19, 2019
25
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.
 

rmabo

Registered User
May 19, 2019
25

d) if you're wealthy good, start spending wisely. If you're not, get ready financially, right now.


When my mum was diagnosed they messed up the diagnosis and put her in the 'late stage' box because they didn't take into account the fact she had isolated herself in the run up to the doctor visit, leading her to be more confused and dishevelled than she normally was. I was told a year at most.

4 years later I'm paying 3k for a care home, 2k for a dedicated carer. That's a lot of money. I'm lucky to have been very successful with my last startup so i'm paying, month after month. But it's adding up.

And don't expect home care to be free of charge either. These GPS trackers to make sure she doesn't wander off? These night lights that trigger based on movement? These partially transparent cupboard windows to show them what's inside (because what's behind a opaque door doesn't exist)? All these gizmos everyone seem to have? They aren't cheap.

I went overboard and I had my home completely redone to cater for someone with such disease. The bill was in the 6 figure range. At the same time, if you can't afford any of this, it's not the end of the world. Don't let companies that sell the gizmos tell you otherwise. Yes, it's nice to have these fancy taps that cut off when it gets too hot - but standing near the person and checking the temp yourself works just as well.

If you're not doing well financially, start getting in touch with banks, friends, family. Get the money UPFRONT, because it will harder to get by later (I'm really sorry to blow your bubble, but people can be very , very cynical when it comes to these things). Expect hardships. Prepare, lower your standards, make that paycheck go a little further every month. Get the whole family on the ball and working together. That family holiday you take every year might have to go. In fact, it will have to go. It's really hard. I know.

e) Alzheimer is a catch all word for a multitude of disease subtypes. The 'progression scale' we all read is not that accurate. At all.

When someone has PPA (primary progressive aphasia), they can become mute. My mother is now mute.If you look at the'stages summary' of most website, that places her on end of life. That's just not true. She has limited memory loss, and outside confusion and language, she's functional within the realm of being cared for 24/7.

One much more interesting scale is the fragility index. That, in my opinion, is the way to measure the progression of the disease. The test can be found on line, are free to read, and very easy to administer. I'm not a doctor, but i can assure you that has stayed true for me to this day.

MMSE etc - you'll find your LO will take it once or twice then the doctors will stop administering it. When you get to 13 and below it's pointless to measure further. Don't get upset by that, it just is. Use your own opinion as a benchmark. Film your loved one. Compare posture/affect etc if you must absolutely track things like that. But MMSe and all these things are diagnosis-level tools, not progression scales.

f) A care home that would provide a personalized service is a care home with 1 nurse per patient. That doesn't exist. Get your expectations right.

I made a huge mistake on this and it's forums users just like yourself that highlighted this to me. I'm grateful for their non-patronizing advice.

I got really frustrated at the idea that once lunch is over, my mum is left to either be wheeled of to watch tv in a room full of people affected to varying degrees by the disease (which is upsetting to watch for her), or left in her room until dinner. So much for 'cognitive stimulation' and whatnot. Activities are group activities. If your LO is socially difficult, these groups may not even valuable for them.

So, I had to hire a carer .He's amazing, he's an angel. He's also 1) absolutely a must have for her to maintain the standard of living i have in mind for her b) 2000 euros a month. But by the end of year one, it became evident i couldn't go on being with my mum 24/7. I'm lucky to have 'partially retired' to care for her but even then - I couldn't leave her home alone for one minute to go shopping, nevermind having a social life of my own. It became impossible -I suffered tremendously, consumed by guilt when I left my mum with my wife and kids so i could 'breath' and walk in the park for 30 minutes. I felt i was passing a burden to my closest support system. I even distrust their capabilites to keep her safe from herself, as they hadn't studied the disease the way i did. I

Having a carer for my mum transformed this - i"m now able to 'have a life' of my own and know that my mother is safe, enjoying the company of a young man full of energy who plays music for her, engages in games, take her out on walks and visits, protects her from herself and other patients that might be agressive, verifies the work of the nurses, takes her to the hospital in case of emergencies, and stimulate her mentally through workbooks I sourced for him.
 

rmabo

Registered User
May 19, 2019
25
That's about it for now, I'll add more later. i hope it's useful - and i hope its not upsetting anyone as I don't mean to be controversial here, just relaying my own experience.

Finally i want to say this: you're all heroes to me. The fact that you're in this very forum proves it. Out of all the homes i visited, I would say 95% of patients were left there alone with no family contact. I won't judge these but i will certainly praise you: i can only hope someone like you will be with me should this disease affect me one day.
 

Bolo

New member
Oct 5, 2017
9
Thank you so much for providing this, based on your experience caring for your mother. It is beautifully direct, insightful and so helpful. I care for my mother with vascular dementia and can identify with so much of what you say. You are an amazing son, your mother should be very proud of you.
 

France-Lise

New member
May 30, 2019
6
That's about it for now, I'll add more later. i hope it's useful - and i hope its not upsetting anyone as I don't mean to be controversial here, just relaying my own experience.

Finally i want to say this: you're all heroes to me. The fact that you're in this very forum proves it. Out of all the homes i visited, I would say 95% of patients were left there alone with no family contact. I won't judge these but i will certainly praise you: i can only hope someone like you will be with me should this disease affect me one day.
Thank you for relating your experience with your mother. You are right about care homes. They don't have enough staff to look after the elderly with or without AZ. As long as you can rely on a competent carer, you and your mother will feel better.
 

Chrystle

Registered User
Feb 15, 2018
12
Thank you for relating your experience with your mother. You are right about care homes. They don't have enough staff to look after the elderly with or without AZ. As long as you can rely on a competent carer, you and your mother will feel better.
Thank you for posting this brilliant insight, I have printed it because I can see myself referring to it often, for reference, and for inspiration!