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.
 
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