Dementia is a beatch

wizardofid said:
Nope just a normal pension and I am the administrator. At the very beginning they use to pay the deductible for tax directly, then they stopped.So for a while I needed to do tax reporting as well.

It is just easier keeping it below the bracket and send the oinkers in SARS a middle finger........Haven't had to do it in the last odd 9 years.....

So yeah fck sars....I am not giving them their pound of flesh unless I can help it.
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aah
thanks for that

yea, screw sars - in my own little opinion, after 60yrs we have given them enough - our vey best years.
for them to continue scavenging from pensioners, is a bridge too far !
 
wizardofid said:
Whoa you getting ripped off mate.

She currently has her own funeral policy valued at R10 000, which realistically would not be sufficient to cover actual expenses. Because of this, she has also been added to my policy. The combined premium is R204 per month, with a 4.5% annual increase and an accidental double death benefit capped at R100 000. Her total cover now sits at approximately R26 000 and mine at R50 000, excluding the accidental benefit.
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Which provider?

Glad you have it all under control.
 
So few months later lol.

Still going well, colder weather is creeping in, now have to start arranging winter clothes for her. She lost a fair bit of weight, also means I have to go buy some new stuff too.

Never ending money pit, and had to order nappies today as well. lol.

Just when you think you have recovered you get smacked with another thing.

As for me I am doing pretty well adjusted decently to being alone, still some lingering background emotions, 2 years of abuse doesn't still fall away in an instance.

Moving her to hospice and all that, has sort moved it to background thoughts now, so rarely think about it not is it on my mind.

I have been clutching my phone for 24/7 for the dreaded phone call, it is literally my second shadow at this point, whether it is the toilet or cooking or sleeping, it is with me like someone that is always on standby, so it will actually be nice to put it down and forget about it and then.

Her progression of the FTD dementia has stabilized still a downward spiral of course, but it is far, far, far less noticeable, it is a far cry from the initial middle stages that progressed in a few months. If I were to hazard a guess from when she first started showing signs was actually 5-6 or years before that, muscle weakness, mood changes and general attention span.

The thing with early FTD dementia there is really very limited signs, you only really notice it in later stages, even a doctor will have a hard time.

But considering the rapid progression I am quite surprised it slowed down, but swallowing is becoming a problem now drooling it usually the first sign of couple of months left
 
I have read and watched a lot about dementia and the people who care for the patients. They actually say that the disease/condition is actually worse on the carers. So you really do need to take care of yourself - they say it can drastically shorten your life.

You say her onset has slowed down? That could be because she is no longer in a place she feels totally safe. Not that I am implying that she is not in a safe place, but they often treat family a lot worse than they treat medical staff. According to the material, they behave worse around people they feel safest with, who they are familiar with. So I really do think it is best for both her and you that she is where she is.

You need to put that phone down. If they call to say she is gone, there is nothing you can gain by holding it. Give yourself some freedom. Say you will check it every hour and then do things you enjoy.
 
TribbleZA said:
I have read and watched a lot about dementia and the people who care for the patients. They actually say that the disease/condition is actually worse on the carers. So you really do need to take care of yourself - they say it can drastically shorten your life.

You say her onset has slowed down? That could be because she is no longer in a place she feels totally safe. Not that I am implying that she is not in a safe place, but they often treat family a lot worse than they treat medical staff. According to the material, they behave worse around people they feel safest with, who they are familiar with. So I really do think it is best for both her and you that she is where she is.

You need to put that phone down. If they call to say she is gone, there is nothing you can gain by holding it. Give yourself some freedom. Say you will check it every hour and then do things you enjoy.
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No dementia plateaus around the last 2 stages, so pretty normal for it to appear to have slowed down, rapid degradation isn't abnormal either.

The rapid degeneration seen in middle stages is more noticeable in early stages, as functions like walking, speech, emotions, critical thinking ect, degenerate. The appears to slow in later stages is less noticeable as there isn't many new functions to degenerate.

As for safe, nope, she is perfectly safe, handled with at most care, I wouldn't read too much into it. It is also an afrikaans hospice/retirement village make of it what you want, it is a semi charity based facility. Those that can pay in full, and those that can't is subsided.


As for the phone nope, it isn't physically in my hand at all times of course, but it is on me. It is second nature at this point. It isn't like I am checking the screen every 5 minutes. It is merely close by at all times and charged.

So yeah it sort of stabilizes, near end stage health may rapidly deteriorate again, but pretty much most of the damage is done in the middle stages.

I will add, the hospice section is staffed well during the week, weekends a bit less staff, and they only do activities during the week. They have a system where they start group meals at specific times so that they can properly assist people during lunch. The only downside is while they have individual care routines. Physical therapy and general therapy is group based instead of individual therapy and focused. That is the only downside.

It is pretty much the best care facility in the freestate for the price, it might not be state of the art facility, it is an extremely well oiled machine, and requires no input or hands on approach from me.
 
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I am glad that it is a good place - that must make it easier. We just moved my mom up here from where she has and the new place doesn't have a frail care facility. Her worst fear is Dementia. My gran got it and mum looked after her until she couldn't. She doesn't want to do that to us - and we of course want to be there for her. But reading what you have gone through has prepared me a little.
 
TribbleZA said:
I am glad that it is a good place - that must make it easier. We just moved my mom up here from where she has and the new place doesn't have a frail care facility. Her worst fear is Dementia. My gran got it and mum looked after her until she couldn't. She doesn't want to do that to us - and we of course want to be there for her. But reading what you have gone through has prepared me a little.
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Old age dementia is different to what my mom has with FTD dementia there may be similarities, but it is significantly worse and much more degenerative, probably the worse of the dementia's out there.

FTD dementia strike as early as in your 40's, it absolutely destroys every aspect of personality, I mean every little bit off it, zero empathy, zero inhibitions, they absolutely lose their filter, they have the attention span of puppy, sundowning is likely the worse symptom.

Old age dementia and other forms are entirely tame compared to FTD dementia.

People assume it is a gradual decline, compared to others, far from it you can often see the degenerative nature in real time. The worse part is, it doesn't necessarily attack memory at first and most of the long term memory stays intact short term memory does suffer a fair bit.

Best way to describe it is Jekyll and Hyde.

I got lucky getting a place 36km away, also have a DNR in place as well as a advance medical directive, it sounds harsh but the reality is the person you knew is long gone and you only keeping the person alive as it is the only legal method and is cruel and usual punishment.

ADVISE !!! To do this NOW
Have her sign a DNR and advance medical directive, and finally you would have to go to a lawyer costs between 600 and 1.5k to become her legal administrator/power of attorney once her faculties are gone you have to approach the high court for that unless you have thousands it ain't going to be cheap.

Get added to her medical aid, bank, or any other service provider as an admin now. Dealing with these things in an emergency is the last thing you want.

The DNR and advance medical directive is a prickly subject for some, but it is protection for her and your self. You will be surprised how quickly final stages can and will drain bank accounts for the person to die anyways. The advance medical directive puts a stop to any and all family fighting about her care. In other words the medical directive is a piece of paper that tells the doctor to pull the plug and not something you have to phsyically deal with and removes that choice from you. The more distance the better.
 
Want to try and update more often.

Anyways been going well went to visit on Tuesday do the usual monthly supply run, get all the needed supply ect. And quick visit. Went and delivered her winter clothes and whatever else was needed.

Arranged for the seasonal flu shots ect, next time I visit I will be wearing a mask, I don't want to catch anything and I don't want to bring anything in. Basically standard consideration.

She was a bit sick over the weekend but fine otherwise, keeps on asking when we going home, yeah that ain't happening.

As for me, my personal recovery is slow and steady, I can't tell you just how much the last 2 years just totally wrecked me, mentally, if it weren't for being at home, 24/7 I don't think everything would have gone as smoothly as it did up to this point. It has taken months and I still haven't recovered entirely it is going to take time and I am fine with that.

It is very likely I will be taking a fishing trip with my brother on the week of the 18th of july, relatively close by to me, getting out my do me some more good. Will wait and see.

Of course a single trip isn't going to fix everything, I would need several 100 more of those trips, lol

Still dementia and especially FTD dementia is fcked up, for the patient and whomever needs to take care of the person.
 
Hey @wizardofid how are things with you? It's been some time since you've been on your own and I hope you've been recovering somewhat. I know nothing gets fixed within months and even years after what you've been through but hope you are ok. I tried to have a conversation with my own mom yesterday (who is in special care) and I could not believe how much she has deteriorated. Just hope you processing things at a pace and finding some new life.
 
AnimateX said:
Hey @wizardofid how are things with you? It's been some time since you've been on your own and I hope you've been recovering somewhat. I know nothing gets fixed within months and even years after what you've been through but hope you are ok. I tried to have a conversation with my own mom yesterday (who is in special care) and I could not believe how much she has deteriorated. Just hope you processing things at a pace and finding some new life.
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Actually doing pretty good.

I have used AI quite a bit over the last few months as an outlet, so to speak. Lol, sounds kind of weird, but it has actually done wonders. It isn't so much about what the AI says. It is being able to offload whatever you are thinking in that particular moment.

It isn't really about judgement or even necessarily getting to the bottom of something. It is just a way of saying, behind closed doors, the things you generally can't say out loud without someone getting all butthurt about it.

Some of it can be quite morbid and sensitive, especially having to talk about her actual death. Things like what happens afterwards, the mundane aspects of the funeral, the admin side, expectations, how things are likely to play out, etc. Stuff that generally makes people uncomfortable and that you don't necessarily want to dump on another person.

For the last few months, though, it was basically about being functional. Eat, sleep and shyte. That was about it. Then setting tiny goals. "I've been looking at that spot on the wall for six months. Let's clean it." And then you clean the fcking spot on the wall. 😂

I think it is pretty hard to explain to someone what caregiver burnout actually is. The assumption can be that the person is simply being lazy, doing nothing, or has lost motivation.

It is a very real thing, though, and it can take months to recover from. Some people bounce back relatively quickly. Others don't.

Forcing yourself back into normal society before you are ready isn't necessarily going to do anyone any favors either.

I still have pretty much the same sentiment towards the extended family, they can fck off.

What I posted to them last year clearly stuck. About two months ago, one of her sisters came to visit her for the weekend, all the way from Bela-Bela. They have a timeshare place here in the Free State, so it isn't like they specifically traveled all that way just to see her.

I was a mere 36 km away and they didn't even bother letting me know or giving me a call.

So they are avoiding me like the plague, which is perfectly fine by me. Could be guilt, could be embarrassment, could be something else. I honestly don't care.

What annoyed me slightly is that they have now seen her in a state where she appears entirely relaxed and, on the surface, almost normal. But that is the nature of FTD. What you see on the surface doesn't necessarily reflect the extent of what has already been ravaged underneath.

Her other sister came to visit the family all the way from Greece, the shyte-stirrer, who I would personally like to uppercut in the vagina. 😂

The open letter they got on WhatsApp basically achieved exactly one thing, don't fck with me. I won't take kindly to it. You want to dish it out, then be prepared to get the same back, unreservedly. You want to have commentary on the situation, then actually do something about it. Otherwise, STFU.

My middle brother has basically been swallowed by the void itself. I haven't heard from him since December last year.

All of the financial responsibility is currently split between me and my eldest brother. He helps with the hospice rent and I handle pretty much everything else: toiletries, nappies, snacks, whatever else she needs.

I visit my mom once a month, check what she needs, do her shopping and that's the job done.

There is no guilt attached to not seeing her every week, because there really isn't much point to it. She has zero concept of time. Yesterday, tomorrow, next week, none of it really means anything to her anymore.

The separation and being relegated to a few minutes of interaction each month is actually ideal. It will be different to each person, I am just doing what works best for me. You may feel the need to go more often.

It may sound brutally harsh, but it really isn't. You aren't dealing with the same person you used to know, whose feelings are going to be hurt because you didn't visit every other day.

With advanced dementia, and particularly FTD, you can end up introducing unnecessary friction simply because you feel guilty about not being there. Their attention span and tolerance for interaction can be extremely limited.

So people need to get over the guilt. You don't have to be there for someone every waking minute just because they have dementia.

Like I said previously in this thread, I am essentially doing my obligation to keep her alive. I said my goodbyes many moons ago. At this point, my role has effectively been reduced to a monthly bill, shopping list and admin duty.

It sounds incredibly harsh when you put it like that, but there is a perspective shift that happens when you realize someone is essentially dying and has been given a death sentence by a disease.

Especially when the process is a long one.

You almost work through the stages of grief while the person is still alive. It sounds weird, but you essentially have months or years to prepare yourself for the eventual death. Grieving a person while alive is also a very real thing.

It is a strange thing to explain. You become emotionally detached, not because you don't care, but because you have had to separate the person from the disease and from the inevitable outcome.

Even with my eldest brother, the dynamic changed over the last two years.

At first, every other conversation was about her. Then, as we both worked through it, it became less and less about her and more about our own lives. We message each other on WhatsApp pretty much every day and video chat every other day.

Now it is basically one call a month after I have visited her, just to give him an update on her condition.

As for being alone, I realize that may be an alien concept to some people, especially those who thrive on constant social interaction.

For me, being a social hermit is actually what works.

I love the quiet and stillness. I can play music at midnight, get up at 2 AM and play games, make food, make coffee, whatever the fck I feel like doing, without having to worry about waking somebody up or disturbing them.

I think people sometimes forget how much of themselves they give up when they live in close proximity to other people.

You don't necessarily notice it because those compromises become part of everyday life.

But when you finally have complete control over your own space, your own time and your own routine, you realize just how much freedom you had been giving away without really thinking about it.


My final thoughts are that it is a weird experience to try to explain to someone.

When your dad or mom passes away, suddenly everything happens at once. The death, the funeral, the admin, the physical removal of the person and then dealing with the fact that they are simply no longer there.

I've had to deal with those things out of order.

I've already had to deal with the physical aspect of her not being here. I've already done most of the admin that can be done beforehand, and I've had years to deal with the reality of her eventual death.

When it actually happens, what is left is largely the funeral and whatever admin can't be done until then.

It is weird, and I don't expect everyone to grasp it or necessarily be able to wrap their head around it.

But having to deal with things out of order has, in a strange way, been a blessing. Especially the separation.

I've already had months to get used to the house being without her. I've already had time to adjust to my life continuing without her physically being here.

So when the final phone call eventually comes, I don't think I'll be dealing with all of that at once.

I will obviously be sad. But I think I'll also be able to celebrate her life rather than being completely consumed by the suddenness of losing her.

I will say I am definitely not in that utter pit of despair of hopelessness I was in previously.
 
Another month another payment made. I have gone through my records. This little expedition has cost close to 200k now, with hospice care, equipment, nappies and, and, and.....

The sad part this is on the low end, I can't imagine people that are paying 25k a month or more. I guess it is worth it for keeping your sanity....

If people were like horses, they would have been taken to the back of the barn already and turned into glue.

Personally had to cut my expenditures to bare min "survival"..... I can't imagine what other people deal with and how many ended up worse off than they started.

And worse what happens to people who have nothing to pay for care. How the fck do they manage it. Absolutely shudder at the thought.......

done.jpg
 
wizardofid said:
The sad part this is on the low end, I can't imagine people that are paying 25k a month or more. I guess it is worth it for keeping your sanity....
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it's mind numbing.

in my mother's instance - mentally good, physically bedridden.
all manner of equipment had to be bought for home - electric hospital bed, nimbus alternating pressure mattress bla bla bla.
carers 24hrs, wound care nurse twice a week, regular nurse once a week, regular housekeeper.
despite all the help, someone has to oversee everything.
then is the regular shopping (groceries etc), managing the old girl's finances, dealing with medical aid, payments for private home care etc.

it soon all morphs into a full time occupation
 
Stay strong. Been a year now since my friend with Dementia died. Sent off the last of her photo's via courier to her closest relatives in Australia last week. I still have her ashes in a cupboard at home. Still not sure what to do with them. I want to take them somewhere meaningful for her but keep postponing it. Keep telling myself I need to close off the chapter but keep finding any excuse not to. Its weird. I need to do one final piece of financial admin as well. There was a little money left over from the money I took out of her accounts just prior to her death to pay for funeral expenses (with her closest family members written permission). Turned out she had a funeral policy I was unaware of so most of the money is left over. About 20k. I asked the family in Aus if I could split it between her two best friends, both single women who did a great deal for her and are living on a small pension so 10K could be like a double cheque for them and would mean a lot. Aus family did not respond but by now the estate is wound up I would imagine so I am assuming silence means consent and doing it anyways.

One thing you said stuck with me. The whole concept of not having a grasp on time anymore. She also experienced that. A week, a day, a month all merged together for her. I still tried to take her to church every week as I knew she loved that and while she was healthy enough we did so but it was obvious she had no recollection of recent events or any idea of what day or time it was.

I am eternally grateful that her pension just covered the care facility she lived in. Could not imagine having to care for someone like that as you did for so long. That was a life saver as she literally had no one here in SA. I could not have burdened my family with taking her in. I was also curious about what happens to people like her who do not have money and found out there are some homes in SA that take people like her in as charity. In exchange for their Sassa pension they get a place to sleep and some food and those places generally raise funds from their communities as they obviously have very little. One place like that in Krugersdorp my father in law occasionally helped out and they were in crisis as their washing machine broke. Trying to wash bedding and clothes of old people who are often unable to control their bodily functions must have been a nightmare. Anyways some local businesses donated a proper industrial machine to them eventually helping out a lot. Some real angels out there who run charities for the destitute and lonely.
 
Cius said:
Stay strong. Been a year now since my friend with Dementia died. Sent off the last of her photo's via courier to her closest relatives in Australia last week. I still have her ashes in a cupboard at home. Still not sure what to do with them. I want to take them somewhere meaningful for her but keep postponing it. Keep telling myself I need to close off the chapter but keep finding any excuse not to. Its weird. I need to do one final piece of financial admin as well. There was a little money left over from the money I took out of her accounts just prior to her death to pay for funeral expenses (with her closest family members written permission). Turned out she had a funeral policy I was unaware of so most of the money is left over. About 20k. I asked the family in Aus if I could split it between her two best friends, both single women who did a great deal for her and are living on a small pension so 10K could be like a double cheque for them and would mean a lot. Aus family did not respond but by now the estate is wound up I would imagine so I am assuming silence means consent and doing it anyways.

One thing you said stuck with me. The whole concept of not having a grasp on time anymore. She also experienced that. A week, a day, a month all merged together for her. I still tried to take her to church every week as I knew she loved that and while she was healthy enough we did so but it was obvious she had no recollection of recent events or any idea of what day or time it was.

I am eternally grateful that her pension just covered the care facility she lived in. Could not imagine having to care for someone like that as you did for so long. That was a life saver as she literally had no one here in SA. I could not have burdened my family with taking her in. I was also curious about what happens to people like her who do not have money and found out there are some homes in SA that take people like her in as charity. In exchange for their Sassa pension they get a place to sleep and some food and those places generally raise funds from their communities as they obviously have very little. One place like that in Krugersdorp my father in law occasionally helped out and they were in crisis as their washing machine broke. Trying to wash bedding and clothes of old people who are often unable to control their bodily functions must have been a nightmare. Anyways some local businesses donated a proper industrial machine to them eventually helping out a lot. Some real angels out there who run charities for the destitute and lonely.
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I at least know exactly what she wants done with her ashes.....and general wishes. The point in Mossel bay so having a planned trip soon after.

Well this place she is in works like that, they function on community help and SASSA grants and is subsidized. However it is run by afrikaans people so you can imagine the world of difference that makes to the place. It is always clean.

It does lack individual care and one on one sessions and they function with bare min staff. It is likely one of the best run facilities in the freestate if not south africa.
 
Grant said:
it's mind numbing.

in my mother's instance - mentally good, physically bedridden.
all manner of equipment had to be bought for home - electric hospital bed, nimbus alternating pressure mattress bla bla bla.
carers 24hrs, wound care nurse twice a week, regular nurse once a week, regular housekeeper.
despite all the help, someone has to oversee everything.
then is the regular shopping (groceries etc), managing the old girl's finances, dealing with medical aid, payments for private home care etc.

it soon all morphs into a full time occupation
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Considering I was a free laborer for 2 years, it would have ballooned massively. Because once you get to the bedridden phase it takes two people to move a person about, or you have to spend thousands on a mechanical lift
 
wizardofid said:
Another month another payment made. I have gone through my records. This little expedition has cost close to 200k now, with hospice care, equipment, nappies and, and, and.....

The sad part this is on the low end, I can't imagine people that are paying 25k a month or more. I guess it is worth it for keeping your sanity....

If people were like horses, they would have been taken to the back of the barn already and turned into glue.

Personally had to cut my expenditures to bare min "survival"..... I can't imagine what other people deal with and how many ended up worse off than they started.

And worse what happens to people who have nothing to pay for care. How the fck do they manage it. Absolutely shudder at the thought.......

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You are fortunate. In Jhb they start at about 28k a month
 
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