Re: Things are getting more and more difficult (to Kate)

April 9, 2012

Hi Kate.

Mum openly admits to loving having the kids around. She loves them so much and

it allows her to nurture, something she enjoys. I always encourage her to say

'no' which is something she's not great at. She gets a small amount ($120) a

fortnight for taking care of the kids and doing my brother's business'

bookkeeping. He is financially well-off and in a position to pay her triple that

amount, and more, but doesn't. It's the same rate he's been paying her for

years.

My eldest brother does get time off but he either spends it renovating

properties he owns, skiing or just being at home in Sydney. This makes him sound

very selfish but he's actually not. He has offered on many an occasion to pay

for any medical costs for Dad (and Mum) so I guess that's where he feels his

strength lies, rather than in being 'around' more often. Having said that, he

has also taken us (my parents and I) out to dinner many times. I know all of my

brothers really well - where their strengths/weaknesses, courage/fears lie and

I'm hoping that when the times get tougher, they'll step up to the plate.

They're integrity-driven but I think it'll take a little more to draw it out of

them further, if that makes sense!?

Thanks for all of your great words of wisdom and I will definitely give Mum a

hug for you - she'll love that

I'll keep you posted.

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.

> > > > > > >

April 9, 2012

OK. I can understand a bit about your older brother's position. I wonder

if there is more to it than just being busy. Does he have a close

relationship with your dad or are there a lot of similarities between

them? For some people, it is just too hard to see their hero, or someone

they are very much alike, appear to be " less " than they have been. The sad

thing about that is there is so much more to see in a person with LBD,

things you never thought to look for before. The two of them could become

closer than ever before during this experience. But I understand how hard

it is. I think that's why I had such a hard time with visiting my

grandmother.

But I'm not going to let him off so easily. When a family member is in a

situation like this, other family members end up making a few sacrifices in

order to help the whole family through it. Not that we're saints or

anything, but my sister and I were very active in politics when it became

clear that Mom couldn't be left to her own devices anymore - not even for

an hour or so. First I gave up all political activity (which used to take

up 2 or 3 evenings a week) and then my sister curtailed her activity.

Sometimes it occurs to me that Mom passed early this year because it is a

presidential election year and she wants us giving it all of our time and

attention (Mom was an early Feminist.)

Here are some things your brother could do to help:

- If you have a friend or family member who your dad is comfortable with

and who might have the time and could use some extra cash, your brother

could pay that friend to spend a couple of hours with your dad a few days a

week. Even if your mom doesn't leave the house each time, being able to

focus on something of her own for those hours (assuming the grandkids

cooperate) would do her a lot of good. Maybe the two of you could go to a

movie or take the kids out for a treat.

- If your brother lives in Sydney, there are things like concerts,

theatre and dance companies that I would bet your mom would enjoy. (I know

for a fact that there is a great opera company there, if you like opera.)

Your brother could invite your mom there for an evening, or weekend, of

culture or just plain fun. If he could start with the suggestion above and

get your dad used to someone else helping him, your brother could even

invite both of you.

- See what your brother thinks of making one of the renovations he is

working on being a mother-in-law apartment (what it is called here)

attached to his house. This would be a great guest house for your mom or,

if your brother can handle it, a place for both of your parents to visit or

even live in, should it become necessary. A cousin of mine did this a few

years ago, thinking it would be for her sister (who has spina bifida), but

it looks like it might be smart to move her parents there now. (My uncle

is showing signs of LBD just as his sister - Mom - did.) This is just a

thought and not meant to put him on the spot so much as to just put it out

there for thought.

- Does your mom ski? Maybe he could take her along on one of those

trips.

- Are all of the areas your brother travels to dangerous? Or are there

business trips to places that would be safe for your mom to visit? Your

mom could take tours during the day or just take walks. Before we knew Mom

had LBD, she went on a business trip with me to Washington, DC and spent

the times that I had to work by taking tours. That, and a road trip to the

east coast we took a few years later, stayed with Mom as highlights, even

through the LBD confusion. Again, just an idea. I'm not suggesting your

brother take her to Afganistan.

When your brother really understands that your mom (and you) have more on

your hands than you should be handling alone, he just might be willing to

change his life for a few years. He'll get it back. And I think he will

be glad he made the time for getting more directly involved. I'm starting

to find my life again, but I wouldn't have given up the last 10 years for

anything. When he gets more involved, I think he will pick up on this. He

does sound like a pretty good guy - who just doesn't understand entirely.

Love to you and your mom, and even a little understanding for your

brother...

Kate

> **

>

> Hi Kate.

>

> Mum openly admits to loving having the kids around. She loves them so much

> and it allows her to nurture, something she enjoys. I always encourage her

> to say 'no' which is something she's not great at. She gets a small amount

> ($120) a fortnight for taking care of the kids and doing my brother's

> business' bookkeeping. He is financially well-off and in a position to pay

> her triple that amount, and more, but doesn't. It's the same rate he's been

> paying her for years.

>

> My eldest brother does get time off but he either spends it renovating

> properties he owns, skiing or just being at home in Sydney. This makes him

> sound very selfish but he's actually not. He has offered on many an

> occasion to pay for any medical costs for Dad (and Mum) so I guess that's

> where he feels his strength lies, rather than in being 'around' more often.

> Having said that, he has also taken us (my parents and I) out to dinner

> many times. I know all of my brothers really well - where their

> strengths/weaknesses, courage/fears lie and I'm hoping that when the times

> get tougher, they'll step up to the plate. They're integrity-driven but I

> think it'll take a little more to draw it out of them further, if that

> makes sense!?

>

> Thanks for all of your great words of wisdom and I will definitely give

> Mum a hug for you - she'll love that

>

> I'll keep you posted.

>

> 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.

> > > > > > > >

April 9, 2012

I just thought of something, Tania. I've assumed that your brother's

camera work is in journalism. If it is, he might (with your mother's

permission, of course) put together a news story about LBD, other forms of

dementia, caregiving and/or research. Even if he doesn't work in

journalism, maybe working on a documentary would help him get more directly

involved - or at least get a clearer picture of what caregiving is like.

Just another thought.