Dementia is a beatch

[wizardofid]

Careful of drawing down the pension too fast if it is depleting the capital. Say her pension is 15K but sustainable. If you increase it to 20K it draws into the capital much faster and in a few years you will find you have a much bigger hole to full. Rather full a 2-3K hole now sustainably than deal with a 20K hole down the road. Unfortunately even with frail people they can sometimes hold on surprisingly long to life. I prefer staying at a sustainable level if possible.

Yeah nothing crazy thought, it would have been 1.8K extra ish, I have monitored and managed the living annuity and kept it under 9 percent for 8-9 years, I think it is the first time I needed to push it above 9.5%, It would have been much higher if she didn't have the medical aid subsidy from her employer.....But yeah she isn't in the best of health, in the last year irrespective of dementia has deteriorated quite quickly, from being able to walk on her own with a zimmer frame to wheel chair in 3-4 months.

It is unlikely she will see end of next year....If she was in perfect health I would love to see her make her 90's and have great grand children, but she has been suffering for 35+ years....with back pain after having had 2 back ops and a neck op.....Given the choice I rather make the suffering stop, and now with her mind going it makes things even worse.....

 

[wizardofid]

Yeah so the doctor phoned me today and they did a brain scan, she has prefrontal dementia with Alzheimer's overall prognosis ain't good, can fetch her tomorrow......went with a friend and got drunk, tomorrow it is back to reality and being in charge and control of another life, just needed to dull the pain and reality on the matter, that the person that was my mom will entirely be forgotten, Just needed to be a day where I can say fck everyone and everything. generally not a person to get drunk and haven't been this drunk in some time.

But I needed to let it out the start of the end, and fck just needed to let loose and fck everyone and every thing, I don't generally drink, occasional beer or two, but I needed to let loose the frustration and the feeling the end is near, and not be the responsible person I am today......

At the moment it is fck everyone and every thing I needed to get fcked up and forget, just needed a moment to have fun without consequences. we played pool and listened to music. it is the most fun I had in a while just to let lose of all responsibility and reason.............

To everyone that lost a parent, I entirely understand your grieve now, my mother might not be gone, but I am slowly losing the person I called my mother, the person I confided in , the person I deeply cared for. I just needed a moment to feel absolutely fck alll.............................................


Fck old age, it is meaningless and extends suffering needlessly.............

Just how I feel at the moment knowing reality, and what precious little time I have left.......................................Fck it, I want to fcking cry and punch a fcking wall........................!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Corelli]

Dementia ward is 17k a month plus and looks like a prison.

Best is, dont put her on drugs etc. Just give vitamins. The faster she moves on the better. They can get violent and aggressive.

I had a grandmother that had it for 13 years. My dad had it for 2. He asked us not to give him medication to keep him active for years.

 

[jdido87]

Lost my dad to dementia last year. He essentially started forgetting how to swallow food. He choked, with the help of my neighbor we managed to get him in my car, already unresponsive at this time. Rushed him to Vincent Pallotti but it was too late. I know what you are talking about, it is hard and was harder than we imagined when my wife and I decided to build a second dwelling on our property for my parents. We went through everything you are going through now and worse. Even though it was difficult looking after him, I will never regret doing so. I was never going to put my father in a care facility even though doctors advised us to many times.

Dementia is a cruel thing, I basically watched my father die over time. He was here physically but mentally and spiritually he was long gone. Funny though if you asked him for advice in his field of expertise he never forgot.

Keep going man.

 

[wizardofid]

Lost my dad to dementia last year. He essentially started forgetting how to swallow food. He choked, with the help of my neighbor we managed to get him in my car, already unresponsive at this time. Rushed him to Vincent Pallotti but it was too late. I know what you are talking about, it is hard and was harder than we imagined when my wife and I decided to build a second dwelling on our property for my parents. We went through everything you are going through now and worse. Even though it was difficult looking after him, I will never regret doing so. I was never going to put my father in a care facility even though doctors advised us to many times.

Dementia is a cruel thing, I basically watched my father die over time. He was here physically but mentally and spiritually he was long gone. Funny though if you asked him for advice in his field of expertise he never forgot.

Keep going man.

What I think makes me more mad is people, don't speak about their experiences, like it is some taboo subject......and you will be ridiculed for sharing. I am not afraid in the least to say as a man it has been and will be the most profound experience I ever experience seeing someone slowly waste away. It is mentally and physically the worse thing you will EVER experience, you will NEVER recover from it entirely, I have heard horror stories of people, that tapered on the edge of, ending their own lives, it is physically and mentally the worse thing you will ever experience and in the same breath the best thing ever, experience the times where they are lucid and functioning. imagine having a 5 year old....that can speak, have rational conversations at times, that wears nappies and weighs in excess of 70kg+..........you need to move about.....at the end of the day you are physically and mentally fkced............and some days completely and utterly defeated.......

It pisses me off even more when outsiders looking in say it can't be that bad.....There are days where they are a absolute pleasure to be around and the days where. you question your own mental well being.

Personally I will keep at it as long as possible to give her dignity and common decency she deserves.......

But I decided FCK the family, the sisters and brothers she has entirely......they don't get to comment, criticize or complain about her well being anymore, they lost that right when they decided to turn a blind eye when I needed help.



Trust me it ain't cheap......it was 12k for the hospital bed, 3000 so far for the linen savers, nappies and gloves thus far and another 3600 for the wheel chair.......

My mother is my world and I will fight, scream, kick and tell everyone to fck off on her behalf as long as she draws breath......and I am not afraid to say it......Someone needs to fight for her as long as possible as no one else will..............that just pisses me off even more that family gives a fck..........they need to fck off now, and they WON'T get close to her funeral, it has been my moms request for years as well............no service, cremate......take me to mosselbay and be done with it.....

 

[jdido87]

What I think makes me more mad is people, don't speak about their experiences, like it is some taboo subject......and you will be ridiculed for sharing. I am not afraid in the least to say as a man it has been and will be the most profound experience I ever experienced seeing someone slowly waste away.

It pisses me off even more when outsiders looking in say it can't be that bad.....There are days where they are a absolute pleasure to be around and the days where. you question your own mental well being.

Personally I will keep at it as long as possible to give her dignity and common decent she deserves.......

But I decided FCK the family, the sisters and brothers she has entirely......they don't get to comment, criticize or complain about her well being anymore, they lost that right when they decided to turn a blind eye when I needed help.



Trust me it ain't cheap......it was 12k for the hospital bed, 3000 so far for the linen savers, nappies and gloves thus far and another 3600 for the wheel chair.......

My mother is my world and I will fight, scream, kick and tell everyone to fck off on her behalf as long as she draws breath......and I am not afraid to say it......Someone needs to fight for her as long as possible as no one else will..............that just pisses me off even more that family gives a fck..........they need to fck now, and they WON"T get close to her funeral, it has been my moms request for years as well............no service, cremate......take me to mosselbay and be done with it.....

Some of brothers' wives said that my dad is acting. It took every once of me not to tell them their MSP. 2 of my brothers basically did not care, their heads are too far up their wives arses. My youngest brother has been to my dad's grave once after he passed away. It was basically my mom, myself, wife and eldest brother including his wife who looked after our dad. They lived with me though. My mom still lives with us and even though my dad passed on it does not stop their because I have to be there for her when she is grieving and lonely.

What I learnt was that those who care for them now will care for them till the day they die. If others haven't stepped in to help by now, they never will. Make peace with this and enjoy the time you have left with your loved one.

I got frustrated with my dad a lot but I had to remind myself that he could not help it. Even the swallowing thing, we only found out after he passed that it is normal for people with advanced dementia.

If I know what I know now it would've made more with the time I had with my dad. I am lucky that I got to spend everyday with him for the last 4 years that he lived with me.

I work from home and he and my mom would come tidy up our house when my wife and kids went to work and school. It father rather funny seeing this once hard-core guy doing dishes everyday .

 

[W@P]

To everyone that lost a parent, I entirely understand your grieve now, my mother might not be gone, but I am slowly losing the person I called my mother, the person I confided in , the person I deeply cared for. I just needed a moment to feel absolutely fck alll.............................................

My man. I am sorry for your situation. I lost my mother in 2022. Since then I have seen the man who used to be this big strong hard-working man, my father, fade away due to his broken heart and severe depression.

I tried everything that I could to get him healthy and to get the depression under control. He was admitted 3 times for his depression, we changed meds, and we did everything possible. He was onboard with all the options and he gave it his all to get well again.

In the end, he just could not handle the loneliness and the broken heart anymore. And he decided to take his own life on 12 July 2024.

He was at peace with himself and the world, he made his decision and planned it out accordingly. He was considerate in his act. And he KNEW that me and his 2 grandkids will be OK after he leaves us.

People, take the time to spend time with your loved ones. We don't know what road has been chosen for us.

 

[wizardofid]

My man. I am sorry for your situation. I lost my mother in 2022. Since then I have seen the man who used to be this big strong hard-working man, my father, fade away due to his broken heart and severe depression.

I tried everything that I could to get him healthy and to get the depression under control. He was admitted 3 times for his depression, we changed meds, and we did everything possible. He was onboard with all the options and he gave it his all to get well again.

In the end, he just could not handle the loneliness and the broken heart anymore. And he decided to take his own life on 12 July 2024.

He was at peace with himself and the world, he made his decision and planned it out accordingly. He was considerate in his act. And he KNEW that me and his 2 grandkids will be OK after he leaves us.

People, take the time to spend time with your loved ones. We don't know what road has been chosen for us.

Wowzer........DUDE !!! I am sorry to hear............. What I learned quickly, is talking about stuff, and get a support system and ANYONE willing to listen......even with my craptastic life at the moment, I am MORE than willing to listen, whenever you need it, as it is fresh still, it will smack you hard and when you least expect......for me that was yesterday....I am feeling much better today, lol a little hungover......but fck it I can tackle it again. It is also the reason I created this thread for my self and let lose.

So yeah whenever you need it, and whenever you are ready and need to rant and reason, shout and skree, skop, donner or beat the shyte out of something......................... PM I will give you my whatsapp..... In fact I will send you a PM now with it......Found a complete stranger is the best medicine........

I am here.....!!!!!!!!!!!!

 

[W@P]

Wowzer........DUDE !!! I am sorry to hear............. What I learned quickly, is talking about stuff, and get a support system and ANYONE willing to listen......even with my craptastic life at the moment, I am MORE than willing to listen, whenever you need it, as it is fresh still, it will smack you hard and when you least expect......for me that was yesterday....I am feeling much better today, lol a little hungover......but fck it I can tackle it again. It is also the reason I created this thread for my self and let lose.

So yeah whenever you need it, and whenever you are ready and need to rant and reason, shout and skree, skop, donner or beat the shyte out of something......................... PM I will give you my whatsapp..... In fact I will send you a PM now with it......Found a complete stranger is the best medicine........

I am here.....!!!!!!!!!!!!

Thank you

 

[wizardofid]

Back home, and it has been surprisingly good yesterday and this morning. She is just happy to be home....sat her down, and tried to explain best I could that she is sick, and what is going to happen next ect. I didn't tell her I was sleeping in the house, she just assumed I went and slept in the outhouse. I should honestly at some point convert it to a granny flat at some point.....lol. So yeah had a good rest in my own bed

She liked to hoard stuff, mags and stuff, just been waiting for the wind to settle so that I can start burning and clearing out the house and get it in order, they don't collect, refuse here at all, so every couple weeks I need to burn the nappies and then I burn all the mags and stuff as well....

I think we are over the worse now, it should get a bit easier to handle, I think she is in the later stages of grieve.......we aren't bumping heads as much, which is great, I want to limit the amount of stress as much as possible to give her ulcer time to heal as much as possible. I really don't want a repeat hospital visits unless I can help it.....

 

[wizardofid]

Went to fill her prescription today, they prescribed risperidone as well as Synaleve , to help with her moods and such, this time they gave a 6 month prescription, now it should be easy to get a new prescription, and had to email to get the medical reports for the dementia and such, to get chronic medications approved ect, otherwise I am screwed.

Hopefully this now calms her down and relax.....synaleve is as needed and risperidone only at night to treat the "sundowner" symptoms

 

[wizardofid]

Been a month with some ups and downs. Decent improvement, nappies still gross af, but such is life. 1.5k a month on nappies, gloves and linen savers.

Occasionally still butt heads....In particular routine, I am keeping to it. It is best to get her accustom to the routine for when she eventually needs to go to an old age home for dementia. She asked why a routine and I said that, even in the old age home you will have a routine and they will stick to it come hell or high water.

Considering her feisty nature, she won't last long in an old age home, because they will kick her out lol.

Just need her to accept that she isn't in control of much and people aren't going to jump on every command given and that is where we bump heads the most, the rest is fine.

 

[now05ster]

Been a month with some ups and downs. Decent improvement, nappies still gross af, but such is life. 1.5k a month on nappies, gloves and linen savers.

Occasionally still butt heads....In particular routine, I am keeping to it. It is best to get her accustom to the routine for when she eventually needs to go to an old age home for dementia. She asked why a routine and I said that, even in the old age home you will have a routine and they will stick to it come hell or high water.

Considering her feisty nature, she won't last long in an old age home, because they will kick her out lol.

Just need her to accept that she isn't in control of much and people aren't going to jump on every command given and that is where we bump heads the most, the rest is fine.

To what extent would you attribute the improvement to the medications - if at all?

 

[wizardofid]

To what extent would you attribute the improvement to the medications - if at all?

her sleep cycle was inverted.....that has changed her moods considerably however. Every few weeks there is a new flavor of the week. For quite a while just wanted to be lifted/raised where she was sitting or lying down.That was fcking annoying.

The flavor now is she wants to be in her wheelchair all the time, which is physically worse as she needs to be constantly supervised and keeps on wanting to go out, whether minus -2 or gale force winds.

Medication doesn't actually address the dementia just to get her sleep cycle to change, which has drastically changed her behavior.

I am still fcking tired by the end of the da, she is a full time job and I have to do my work, yard house, washing cooking ect, by 8pm I am fckered..........

 

[TribbleZA]

You need to take care of yourself too. I have a friend who spent a few years looking after her mother and the stress, worry and lack of sleep have done so much damage to her. She has ended up with ME and depression and basically struggling with her own existence now her mom is gone. If you can afford to pay for some occasional help - you should do it. If only to give yourself a break. I know it sounds cruel - but also consider the home if you can afford it. You have your life to live. I would not want my kids sacrificing their lives to look after me.

 

[now05ster]

her sleep cycle was inverted.....that has changed her moods considerably however. Every few weeks there is a new flavor of the week. For quite a while just wanted to be lifted/raised where she was sitting or lying down.That was fcking annoying.

The flavor now is she wants to be in her wheelchair all the time, which is physically worse as she needs to be constantly supervised and keeps on wanting to go out, whether minus -2 or gale force winds.

Medication doesn't actually address the dementia just to get her sleep cycle to change, which has drastically changed her behavior.

I am still fcking tired by the end of the da, she is a full time job and I have to do my work, yard house, washing cooking ect, by 8pm I am fckered..........

Flip man. I'm basically the house husband (while having a full time job) and I can't imagine what you are going through.

Mate of mine has a father in late stage (whatever you call it) dementia, although judging from what you say it sounds like it can still get worse.

He is in his late 60s and ambulatory,not incontinent and the meds keep him docile. He, however, has his son, son's wife and his wife still living with him. Yet it takes a strain in all of them .

He can't recognise faces anymore and would repeatedly stand in front of the mirror having a fat conversation with himself.

Strongs man. Insert whatever cliche, I suppose.

 

[wizardofid]

Flip man. I'm basically the house husband (while having a full time job) and I can't imagine what you are going through.

Mate of mine has a father in late stage (whatever you call it) dementia, although judging from what you say it sounds like it can still get worse.

He is in his late 60s and ambulatory,not incontinent and the meds keep him docile. He, however, has his son, son's wife and his wife still living with him. Yet it takes a strain in all of them .

He can't recognise faces anymore and would repeatedly stand in front of the mirror having a fat conversation with himself.

Strongs man. Insert whatever cliche, I suppose.

You learn on the fly how to deal with it. It is worse actually if they are mobile, then they need 24/7 supervision my mom is wheelchair bound, in the wheel chair they need supervision.

Yeah I am over it. We have collected over 20 years of junk here old boxes for electronics that no longer work paper work and mags that are no longer relevant, so every week I am throwing stuff away or burning it, rural area so not a problem. Slowly clearing out stuff so I don't have to do that stuff after she is gone.

So yeah it is what it is..........

 

[Cius]

Glad to hear that there is at least some improvement. For the lady I assist with there was a big setback last week. Had to go one afternoon to sit with her and make some calls to Stanlib to get some old tax info as I recently figured out she does need to submit them but stopped about 5 years ago. Fines are accruing and all that. Needed some older tax statements but she had to be on the call for me to get them. Anyways after sorting that out I got a call from the manager of the home the following day saying she is saying goodbye to everyone and refusing to let the staff do her washing as she has to pack as she is moving back into her flat and that I was coming to fetch her that day. We never discussed this at all. I try never bring up her flat as it always sets her off but one of the security questions Stanlib asked her was her address and we had to give the old address as it was never updated. guessing that triggered the fantasy.

Anyways, lots of tantrums and tears later to get her settled and a week later she is still confused about it all. Especially in the evenings she can get a bit nasty to the staff. Zero recollection of selling her house and her car, and on the advice of the home where she stays, we just lie to her if she asks and just let her think her flat is still there for her as its kind of like a mental crutch of hope they need in some ways. Hard to watch. From being one of the most fiercely independent people I know to this is hard.

 

[Went_For_Beer]

Dude it sounds hectic and im glad you found a way to express yourself, it helps a lot. My gran had dementia and Alzheimer's, it was bad and I get what you going through

Be strong and always see the bright side

 

[wizardofid]

Glad to hear that there is at least some improvement. For the lady I assist with there was a big setback last week. Had to go one afternoon to sit with her and make some calls to Stanlib to get some old tax info as I recently figured out she does need to submit them but stopped about 5 years ago. Fines are accruing and all that. Needed some older tax statements but she had to be on the call for me to get them. Anyways after sorting that out I got a call from the manager of the home the following day saying she is saying goodbye to everyone and refusing to let the staff do her washing as she has to pack as she is moving back into her flat and that I was coming to fetch her that day. We never discussed this at all. I try never bring up her flat as it always sets her off but one of the security questions Stanlib asked her was her address and we had to give the old address as it was never updated. guessing that triggered the fantasy.

Anyways, lots of tantrums and tears later to get her settled and a week later she is still confused about it all. Especially in the evenings she can get a bit nasty to the staff. Zero recollection of selling her house and her car, and on the advice of the home where she stays, we just lie to her if she asks and just let her think her flat is still there for her as its kind of like a mental crutch of hope they need in some ways. Hard to watch. From being one of the most fiercely independent people I know to this is hard.

People think it was only at the onset of the dementia, they I have started taking care of her. I have been doing it for at least 10 years, cooking, cleaning washing ect, she hasn't been mobile for some time.....so yeah even before this I was mentally fkkered.........Over the most of it, but it does on occasion hit like a sht ton of bricks...............

So not new to this all, it is just gotten to the point she can't do anything for her self anymore.

Something that rears its ugly head from time to time is her OCD, and is completely unbearable. Zero way to control it just have to remove the stimulus and ignore pleas for it and at other times she has the attention span of a puppy....