Really hard to see what's the point of all this right now

[zeeeb]

Just got back from the neuro-psych appointment with mum. She now has been diagnosed with Parkinsons as well as early onset Alzheimers (she's 58).

Thank goodness I have children, because right now, they are all that is keeping me going. The only reason I haven't given up all hope on life. The only reason that I know I need to get through these next 13 years, is to get my children through school. I'm thankful that I have a reason to get through at least the next decade, and hopefully wisdom and life experience will give me further reason to carry on after that.

What a kick in the teeth for her. I now feel guilty for thinking harsh thoughts about her, about thinking that's she's "just given up on life". But with a prognosis like hers, how the hell does one even bother to get out of bed in the morning?

Great day, just brilliant. I guess if you got this far, you should be thankful I held back on a million expletives that I really want to say right now.

 

[jenniferpa]

There's not a lot that I can say except I am so very sorry.

 

[FifiMo]

Hiya Zeeeb,

So sorry to read about your poor mum's further diagnosis. It certainly causes all the non-answerable "Why" questions to come out doesn't. When I read your post my first thought was "That poor woman, why is alzheimers not enough to have to bear now parkinsons being added into the mix too." How has your dad taken the news?

All I can say is that you have the continuing support from Talking Point. People will at least travel the journey with you and help wherever they can.

Fiona

 

[zeeeb]

Dad's taken it ok i guess. I think we were all kind of expecting it, so it's not a great shock, but still a massive kick in the guts. The neuro psych barely spoke to her, he barely made eye contact with me, and just spoke to dad, which is pretty poor form I thought, considering mum is still very much ok to have the news delivered to her personally.

I told him (dad) yet again he needs to get her to a psychologist immediately so she can try and deal with all of this. We'll see what happens I guess.

There was not really much hope last week, and today, the power has been cut, and there is just no light, and no hope of even trying to find the end of that tunnel. She really has hit the jackpot this time.

 

[FifiMo]

What kind of treatment and support is there in Aus for your mum? I remember years ago forming the opinion that Australia was leading in a lot of ways so far as Alzheimers at least was concerned. Most of the information I found on the internet when I first needed to go looking for it was all Australian stuff. I hope that they have continued to build on this over the years and that your mum gets the support and treatment that she needs.

Fiona

 

[lin1]

So sorry Zeeb

 

[zeeeb]

i don't really know that there is much for my parents, as they live in the country, so what's available in the cities (which is quite good as far as i've been led to believe) is not available where they live unless they want to travel 2 hours for it which is not viable. she already has to travel 2 hours to see her geriatric specialist, now her neuro psych and anything she needs done in the city. so she's not going to travel that far for support groups. she seems to have to come to the city once every couple of months for appointments, and it's really inconvenient, her neuro psycho only works fridays, and her geriatric specialists only works wednesdays, so it's not like they can even make the appointments on the same days, really inconvenient.

I presume once things settle down a bit, they'll probably stop going to these appointments because they aren't exactly changing anything, just monitoring, and juggling drugs.

Dad says there is someone in their town who is really into parkinsons, and has a wife with it, and he's heavily involved in the support services, so hopefully they will have something available locally in that regard.

 

[Izzy]

Oh Zeeb I'm so sorry to read your post. Your mum is so young too. I hope you find TP to be be of some help to you. It's always good to know you can come on here and just get things off your chest. There's always someone around to give help and support. Please keep visiting the forum. Take care. x

 

[Grannie G]

I`m really sorry to hear about your mum zeeeb. Such a shock at any age but even more so in one so young.

I do hope your dad will manage. If there is little local support for your mum it will be even harder for him.

Does he use a computer? Do you think he would benefit from TP?

 

[jeany123]

I am very sorry to hear about your mum ,


Jeany x

 

[ggma]

Really sorry to read you news and no wonder you are feeling so down. I am sure your Dad and Mum are reeling with the news as well.

It is good that your Dad knows someone who has knowledge of Parkinsons. All neuro conditions do progress at different rates in different people, so you Mum may well have some good years ahead of her for some time before the illnesses cause real difficulties in her life.

Hope you feel better soon

 

[Big Effort]

Oh, this is a kick in the teeth, isn't it.

But ggma is right, these diseases may progress very slowly if we are lucky. Re Parkinsons, I have an uncle who has had it for over 10 years, he is not easy to medicate as he doesn't believe in that stuff, he certainly isn't getting good ongoing care either, and despite this he is in excellent shape. Only difference I can see in his life style is he uses it as an excuse not to have to take a long walk every day! Also he has a tendency to get depressed, which responds well to anti-depressants.

I now feel guilty for thinking harsh thoughts about her, about thinking that's she's "just given up on life".

This 'giving up' behaviour was what made my aunt seek a diagnosis for my uncle, so it may be a symptom of Parkinsons. Just a thought.

Hopefully as you continue posting, you will be able to confirm that this isn't a kick in the teeth, merely a kick in the tooth.

My thoughts are with you as you adapt to this new facet in your Mum's illness. Take care, BE

 

[meme]

sorry about this ...life is cruel....it may not be as bad as you imagine though...

 

[Josieb]

I'm sorry to read your news. My Dad had Parkinson's at 60 and then developed dementia. He died at 86 and not from the above, but from negligence in appalling hospital care after a fall and a broken hip. My mum cared for him, but the most difficult problems to over come for him was motivation and depression. We were lucky to over come these without drug intervention.
I understand the shock and the feeling of dispair you have. I'm good at thinking but not putting all that into meaningful words. I too felt total dispair after my very fit and well mum was diagnosed with AD four years ago, and so on we go again.
A good book to read is Gamma Healing by Chris Walton.

 

[Nanak]

Hi Zeeeb
So sorry to hear your news. 58 is so young
I don't have any advice but can send you a (hug) a bit closer to home as I also live in Australia.
Nanak