Re: Re: Things are getting more and more difficult

[Guest guest]

Thanks, Tania. I do have an amazing family that I am grateful for every

day (even if I am also a bit irritated by them). I have 3 sisters, rather

than brothers. Here are a few things we learned along the way:

- When you ask other family members to help, you are actually doing them

a favor - even if they see it as an inconvenience at the time;

- There is no really good reason why, regardless of where someone works

or how hard they work, they can't take a few days or a week of vacation or

leave to spend precious time with their parents;

- Even if someone has a spouse or children of their own, they can still

take a few days away to be with their own parents;

- It is good for grandchildren, even young grandchildren, to spend time

with their grandparents, regardless of the condition of each grandparent.

My niece was 3 years old when her great-grandmother (an amputee with

dementia) passed away and she remembers and honors her great-grandma

because she spent time with her frequently;

- *You cannot do this alone and your mother can't either. * Nor should

either of you. Your brothers need to see the specialness of this time and

appreciate it. If they don't, they will regret it later. Two of my

sisters lived a few hundred miles away during most of Mom's experience with

LBD. Eventually, they and their wonderful spouses made adjustments to

their lives and moved closer because they wanted to be more involved. This

is a precious and special time and, whether they know it or not, your

brothers will regret missing it.

I ended up sending my siblings a long, heartfelt email explaining the needs

Mom and I had and what they were missing (it took a date with surgery for

me to be desperate enough to do it). Don't wait until you are desperate.

And don't make it easy for your siblings to leave everything to you. They

need to know they are needed and they need to know what they are missing.

We're with you.

Kate

> **

>

>

>

> Another inspiring message, thanks Kate. It's difficult getting Dad out

> because he gets stressed out and I did tell Mum (on the advice from a

> friend whose mother has dementia) that I wanted to find out more about

> Dad's childhood, etc, but she says he's told her just about everything over

> the years.

>

> I take pictures of Dad as much as possible. I'll post some on here so

> anyone interested can see. He's so gorgeous.

>

> I have three older brothers, one of whom is constantly overseas for work

> and two who have their own families. I keep them updated with information

> on Dad and they worry a lot but that tends to be where their involvement

> ends. They don't contribute to his care - not necessarily (I believe)

> because they can't be bothered but moreso perhaps due to the fact that

> they're not good at handling things like that, whereas I'm more like Mum in

> the sense that I'm more of a hands-on realist. I got involved before even

> moving back to my home town last year by getting my parents up to Sydney

> (Australia's biggest city) to see various specialists in order to get

> correct diagnoses, etc, and I'm so glad I did. Otherwise Dad would still be

> treated (if you can call it that - his early neurologist was hopeless and

> arrogant) for Parkinson's only.

>

> I've offered to stay with Dad for a week, or even a few nights, so that

> Mum can get good sleep but she just won't hear of it. And she won't put him

> into respite (which he's entitled to for free, having now been assessed as

> high-risk) because it would be so daunting and horrifying for him. It's a

> difficult situation but perhaps something as simple as a 'bedside kitty

> litter toilet' could be a good solution for now!

>

> Dad tends to love recounting stories and it seems to cheer him up so I

> think I'll encourage him to do that. Maybe I'll even video some of them.

>

> Your family sounds incredible, Kate and also lucky to have you. I would do

> anything for my family, particularly my parents.

>

> Tania

>

>

>

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > Hi all. It's been a while since I posted on here last but that's

> not to

> > > > > say lots of stuff hasn't happened. But it's taken a fairly severe

> turn

> > > for

> > > > > the worse of late.

> > > > >

> > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and

> > > finally

> > > > > PDD 2012) for a few minutes and after she'd been home for a while,

> > > noticed

> > > > > a huge dent in the side of the oven. She asked Dad if he'd had a

> fall

> > > and

> > > > > he said he had. This is just the latest of many bad falls he's had

> in

> > > the

> > > > > past couple of years. But this time it's worse.

> > > > >

> > > > > Dad's right buttock was extremely sore/tender after the fall and

> after

> > > not

> > > > > getting any better, we took him to see his doctor (GP) on

> Thursday. He

> > > (the

> > > > > doctor) was extremely concerned about Dad's breathlessness and was

> > > worried

> > > > > he may have a clot somewhere. Long story short, after 8.5 hours in

> > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad

> had

> > > > > (thank God) no broken bones but does have a damaged piriformis

> muscle

> > > in

> > > > > the behind which explains his extreme pain and that he would need

> > > further

> > > > > tests to determine if he has a blood clot (which can be fatal)

> > > although the

> > > > > blood tests were indicating that there was. Now we have to wait

> until

> > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot.

> > > > >

> > > > > Aside from the obvious danger of the clot, the GP has advised that

> it

> > > is a

> > > > > dangerous situation whether we were to treat a clot or ignore it.

> To

> > > treat

> > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He

> is

> > > > > already on blood thinners for his heart but this is way more

> powerful.

> > > > > Warfarin would probably help the clot but if Dad were to have a

> fall

> > > whilst

> > > > > on this medication, he could bleed to death. But if he does have a

> > > clot and

> > > > > it's left untreated, it may be OK, but could also be fatal.

> > > > >

> > > > > When Dad was diagnosed with this awful disease, I pictured him

> dying

> > > from

> > > > > perhaps pneumonia, a few years down the track. Now, and only now, I

> > > realise

> > > > > that the only thing you can be sure of with this disease is that

> you

> > > can't

> > > > > be sure of anything.

> > > > >

> > > > > Thanks for listening. I don't quite know what it is I'm trying to

> say.

> > > I

> > > > > guess I just wanted to put these horrible feelings into words as

> Dad

> > > seems

> > > > > to be worsening and it's heartbreaking.

> > > > >

> > > > > Tania....

> > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > > > --

> > > > Kate Knapp, OIT

> > > > University of Minnesota

> > > >

> > > >

> > > > You were born with certain gifts and talents.

> > > > In kindergarten you were taught to share.

> > > > The world needs all of the gifts it can get.

> > > > Don't be shy.

> > > >

> > > >

> > > >