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Ah, Elaine, how hard that must have been to wait with Jim through such a

slow process of passing.

My dad passed away in '71 from a ruptured AAA. It took about 24 hours. I

have a thorasic AA that has been under control for about 4 years. As all

three of my grandparents who lived past 65 ended up with some form of

dementia, I figure my odds are pretty good for having some form of it

myself, should I live into my late 70s. And I have often thought that, at

the early signs of dementia, I might stop the medication that controls my

AA in the hopes that it takes me before the dementia advances to a point at

which that decision is taken out of my hands. Not only do I often think of

the AA taking me first, I sometimes pray that it will before dementia takes

my brain and leaves my body functioning. Or for a quick, beautiful passing

like my mother's from pneumonia just a month and a half ago. I am starting

to think of the AA as a gift, rather than the time bomb medical

professionals sometimes call it.

I hope there was some peace in Jim's passing and that your memories are

gentle.

Kate

On Tue, Mar 27, 2012 at 6:25 AM, Elaine Elliott wrote:

> **

>

>

> Hi Tania

>

> I'm really sorry to hear that your father is deteriorating. That must be

> very hard for you and your mother.

>

> I think Kate's advice - or the questions she poses - is good.

>

> My husband Jim was also initially prescribed Warfarin, and I was given the

> 'training program' about all the things to watch out for, but in the end,

> they decided to withdraw the medication because of his falls.

>

> One of the hardest things about LBD is not knowing what is ahead,

> especially

> the manner of dying.

>

> Jim had so many other risk factors - such as an abdominal aortic aneurysm,

> chronic heart failure - yet he died from, for want of a better word,

> starvation. He stopped eating and drinking and his body slowly wound down.

> I

> also thought he would die from pneumonia or the AAA would burst.

>

> Elaine from Sydney Australia

>

> Carer for four years for husband Jim who died peacefully in hospital on

> 12th

> February 2011.

>

> Brain analysis, as a result of brain donation, has now confirmed the

> diagnosis of Diffuse Lewy Body Disease

>

>

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Oh, the good days and the bad days. I hope you're making use of the good

days as much as possible. I'm so glad that we did. Mom was incontinent

and in a wheelchair. Most often, I'm not sure she was fully aware of what

was happening. She seldom found a way to say a word (maybe once a week).

We would approach holidays with back-up plans - the original plan to be at

one of my sisters' houses and the back up to bring the holiday celebration

to Mom in the nursing home. But even on the non-holidays, if she was in

good enough shape for it, we took her shopping or for drives or to

" supervise " my sister as she worked in her garden. We avoided visits to

friends because we would never know whether Mom, or the friend we were

visiting, would know each other or would become nervous and upset about an

uncomfortable situation.

Every May we would take Mom on the cemetery run (Memorial Day) to my dad's

gravesite and then 100 miles north to her hometown and my dad's hometown to

visit my grandparents' graves. This was something we'd done for as long

as I could remember and it was always important to Mom. Because of it's

significance to her, and because she had a chance to see the farm she grew

up on and the lake she learned to swim in, I think it would help her figure

her memories out. Before we would leave the cemetery in her hometown, Mom

would want us to take her around so that she could read the names on all of

the memorial monuments. I think that helped her to remember who she was.

And she would even find words to say something about one family or another.

In the two months before she died, Mom was able to celebrate Christmas with

almost all of her children and grandchildren when we took her to spend the

day at my sister's house. Her hearing aids were broken and mine were a

not-too-fitted type, so I put my aids in her ears and she was thrilled to

hear all of the voices and songs and followed almost all of the

conversation. A month after that, she was able to choose first birthday

gifts for her two great-grandsons (born a month apart). And a week before

she died, we had an incredibly wonderful weekend being out and about.

I write too much, too. Sorry about that. My point and advice is to make

use of these days, weeks, months when your dad is " here. " If you can, get

him talking about himself and his family history. These days may be your

last chance to hear stories he hasn't thought to tell you before this.

Plan for good times and have back-up plans in case they go bad. When we

went shopping, we always had extra pants and pull-ups and lots of wipes -

prepared to give Mom a sponge bath in a rest room if we had to. You get a

lot less shy about these things and decide that anyone with a problem with

what you are doing can go find another rest room.

Are you an only child or do you have a sibling you can collaborate with in

order to get your mom out for a badly needed rest? Or a friend or

neighbor? One of you could stay with your dad and care for him and the

other could take your mom out - maybe even overnight or for a few days.

Maybe your mom would trust family or a close friend with your dad more than

she would trust hired help. What your mom is doing is amazing and she

deserves not just a lot of credit but also a lot of care and

understanding. It never occurred to me to think about what my grandmother

was going through with my grandfather, who was diagnosed with AZ in the

1960s, but we're pretty sure it was LBD. And he was deeply drugged and

docile. I look back and am amazed at what she handled. I really do think

it must be harder to care for a spouse than for a parent.

My grandmother did do one thing that your mom might consider. Grandma and

Grandpa shared a bedroom their entire lives. But when Grandpa was drugged

and incontinent, Grandma brought in twin beds placed close together. They

could still hold hands, but had separate mattresses so that Grandma's bed

stayed dry. Back then " pull-ups " were cloth diapers and wet beds were a

nightly thing. I think, for Grandma, it was a matter of trying to keep as

much of their lives as possible without making her life any worse than she

had to. She was a very practical woman.

Please give your mom my respect and best wishes. And make as many memories

as you can, while you can. You have such a precious opportunity right now.

And Tania, you deserve a few " atta girl " s. You being there helping your

mom and, yes, worrying about her, means and will mean the world to her.

Kate

> **

>

>

>

> Hi Kate.

>

> Dad, like most with PDD/LBD, has his good and bad days. Every day is

> different and completely unpredictable. This morning he lost his temper

> with Mum because she left him to rest in bed after she got out because it

> was a dreary day outside. I spoke to him to calm him down. He was convinced

> that Mum had left him in bed because she didn't want to feed him but I

> explained that Mum likes to help take care of him and that she has his best

> interests at heart. He eventually calmed down and agreed to eat his

> breakfast.

>

> The good news is that we took him for a VQ scan (scan of the lungs)

> yesterday and he doesn't have a clot on his lung. He may still have a clot

> somewhere else, so it's not over yet, though a lung clot would have been

> very difficult to deal with.

>

> I'm still confused as to what is yet to come. Because Dad has PDD, his

> body is going before his mind so hallucinations and the like have been very

> mild and very rare - only one or two so far. Most of the time he 'is' with

> it cognitively (he can tell me what the team lineup for the football team

> is that week or tell a story from years ago) but other times he stutters

> and can't quite get out what he wants to say. In hospital last week they

> asked him what year it was and he said it was 1980-something.

>

> As far as being ready to let Dad go, I'm definitely not ready for that.

> I'm hoping I'll be ready when the time comes but I believe it's a bit of a

> way off yet. His bodily functions are worsening a little all the time (he's

> wetting himself occasionally now and walking even a little tires him out

> tremendously). He's said more than once to my mother that he " doesn't want

> to die " so I don't think he is near being ready either. If the time comes

> when he says (or we can see) that he doesn't want to go on, we will have to

> let him go. I've even thought about what I would say at that time.

>

> The modifications on my parents' bathroom and the building of a ramp

> outside their house was recently finished. It is now safer for him to bathe

> and get in and out of the house. At present, apart from myself, Mum doesn't

> have any additional in-home help. We have had assessments done and will no

> doubt have to get someone in very soon.

>

> I feel for Mum because she insists on sleeping next to Dad every night to

> help him out of bed for the bathroom and in case he has a problem during

> the night but in the process, she hasn't had a good night's sleep in months

> and months. Dad gets up to the bathroom between 2 and 6 times a night. I've

> offered to take sole care of Dad for a while to give her a break but she

> won't hear of it.

>

> Aaaaah, so many complications! I'm sorry to write such a lengthy piece

> again but hopefully something here may help someone else.

>

> And thanks to everyone for your ever-useful advice. I couldn't bear to

> live without it/you!

>

> 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.

> >

> >

> >

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Oh, the good days and the bad days. I hope you're making use of the good

days as much as possible. I'm so glad that we did. Mom was incontinent

and in a wheelchair. Most often, I'm not sure she was fully aware of what

was happening. She seldom found a way to say a word (maybe once a week).

We would approach holidays with back-up plans - the original plan to be at

one of my sisters' houses and the back up to bring the holiday celebration

to Mom in the nursing home. But even on the non-holidays, if she was in

good enough shape for it, we took her shopping or for drives or to

" supervise " my sister as she worked in her garden. We avoided visits to

friends because we would never know whether Mom, or the friend we were

visiting, would know each other or would become nervous and upset about an

uncomfortable situation.

Every May we would take Mom on the cemetery run (Memorial Day) to my dad's

gravesite and then 100 miles north to her hometown and my dad's hometown to

visit my grandparents' graves. This was something we'd done for as long

as I could remember and it was always important to Mom. Because of it's

significance to her, and because she had a chance to see the farm she grew

up on and the lake she learned to swim in, I think it would help her figure

her memories out. Before we would leave the cemetery in her hometown, Mom

would want us to take her around so that she could read the names on all of

the memorial monuments. I think that helped her to remember who she was.

And she would even find words to say something about one family or another.

In the two months before she died, Mom was able to celebrate Christmas with

almost all of her children and grandchildren when we took her to spend the

day at my sister's house. Her hearing aids were broken and mine were a

not-too-fitted type, so I put my aids in her ears and she was thrilled to

hear all of the voices and songs and followed almost all of the

conversation. A month after that, she was able to choose first birthday

gifts for her two great-grandsons (born a month apart). And a week before

she died, we had an incredibly wonderful weekend being out and about.

I write too much, too. Sorry about that. My point and advice is to make

use of these days, weeks, months when your dad is " here. " If you can, get

him talking about himself and his family history. These days may be your

last chance to hear stories he hasn't thought to tell you before this.

Plan for good times and have back-up plans in case they go bad. When we

went shopping, we always had extra pants and pull-ups and lots of wipes -

prepared to give Mom a sponge bath in a rest room if we had to. You get a

lot less shy about these things and decide that anyone with a problem with

what you are doing can go find another rest room.

Are you an only child or do you have a sibling you can collaborate with in

order to get your mom out for a badly needed rest? Or a friend or

neighbor? One of you could stay with your dad and care for him and the

other could take your mom out - maybe even overnight or for a few days.

Maybe your mom would trust family or a close friend with your dad more than

she would trust hired help. What your mom is doing is amazing and she

deserves not just a lot of credit but also a lot of care and

understanding. It never occurred to me to think about what my grandmother

was going through with my grandfather, who was diagnosed with AZ in the

1960s, but we're pretty sure it was LBD. And he was deeply drugged and

docile. I look back and am amazed at what she handled. I really do think

it must be harder to care for a spouse than for a parent.

My grandmother did do one thing that your mom might consider. Grandma and

Grandpa shared a bedroom their entire lives. But when Grandpa was drugged

and incontinent, Grandma brought in twin beds placed close together. They

could still hold hands, but had separate mattresses so that Grandma's bed

stayed dry. Back then " pull-ups " were cloth diapers and wet beds were a

nightly thing. I think, for Grandma, it was a matter of trying to keep as

much of their lives as possible without making her life any worse than she

had to. She was a very practical woman.

Please give your mom my respect and best wishes. And make as many memories

as you can, while you can. You have such a precious opportunity right now.

And Tania, you deserve a few " atta girl " s. You being there helping your

mom and, yes, worrying about her, means and will mean the world to her.

Kate

> **

>

>

>

> Hi Kate.

>

> Dad, like most with PDD/LBD, has his good and bad days. Every day is

> different and completely unpredictable. This morning he lost his temper

> with Mum because she left him to rest in bed after she got out because it

> was a dreary day outside. I spoke to him to calm him down. He was convinced

> that Mum had left him in bed because she didn't want to feed him but I

> explained that Mum likes to help take care of him and that she has his best

> interests at heart. He eventually calmed down and agreed to eat his

> breakfast.

>

> The good news is that we took him for a VQ scan (scan of the lungs)

> yesterday and he doesn't have a clot on his lung. He may still have a clot

> somewhere else, so it's not over yet, though a lung clot would have been

> very difficult to deal with.

>

> I'm still confused as to what is yet to come. Because Dad has PDD, his

> body is going before his mind so hallucinations and the like have been very

> mild and very rare - only one or two so far. Most of the time he 'is' with

> it cognitively (he can tell me what the team lineup for the football team

> is that week or tell a story from years ago) but other times he stutters

> and can't quite get out what he wants to say. In hospital last week they

> asked him what year it was and he said it was 1980-something.

>

> As far as being ready to let Dad go, I'm definitely not ready for that.

> I'm hoping I'll be ready when the time comes but I believe it's a bit of a

> way off yet. His bodily functions are worsening a little all the time (he's

> wetting himself occasionally now and walking even a little tires him out

> tremendously). He's said more than once to my mother that he " doesn't want

> to die " so I don't think he is near being ready either. If the time comes

> when he says (or we can see) that he doesn't want to go on, we will have to

> let him go. I've even thought about what I would say at that time.

>

> The modifications on my parents' bathroom and the building of a ramp

> outside their house was recently finished. It is now safer for him to bathe

> and get in and out of the house. At present, apart from myself, Mum doesn't

> have any additional in-home help. We have had assessments done and will no

> doubt have to get someone in very soon.

>

> I feel for Mum because she insists on sleeping next to Dad every night to

> help him out of bed for the bathroom and in case he has a problem during

> the night but in the process, she hasn't had a good night's sleep in months

> and months. Dad gets up to the bathroom between 2 and 6 times a night. I've

> offered to take sole care of Dad for a while to give her a break but she

> won't hear of it.

>

> Aaaaah, so many complications! I'm sorry to write such a lengthy piece

> again but hopefully something here may help someone else.

>

> And thanks to everyone for your ever-useful advice. I couldn't bear to

> live without it/you!

>

> 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.

> >

> >

> >

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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.

> > > >

> > > >

> > > >

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Share on other sites

Guest guest

I wonder if helping with the kids is a welcome distraction for your mom.

She may need them around. But encourage her to say enough when she has had

enough. Does she get paid for babysitting? I know a lot of people,

including my favorite niece, who think that Grandma should be happy to

spend time with the grandkids and don't even think about paying her. But

even a token could help your mom, or at least let her feel appreciated.

You are being awfully kind to your brothers. But don't let your older

brother off too easily. My brother-in-law had the same job (he called it

" broadcast news photographer " ) before he quit to attend seminary. I know

they get vacations. As far as the personal things he has to take care of,

don't you have things to take care of, too? Traveling that much, he must

be well aware of how much he can accomplish over the Internet. If it

involves another person, maybe he could combine time with your dad with

time with that person. And the stories your brother could tell your dad

would be, I think, really exciting for him. I don't want to come down hard

on the guy who seems to be your best hope for support, but I would think he

could arrange one week a year, if he tried. Meanwhile, is a weekly Skype

video call a possibility?

I hope your brothers understand what they are missing before it is too

late. It really is something special.

Give your mother a hug from me and tell her that she is not alone. You are

not alone, either.

Kate

> **

>

>

>

> Hi again Kate.

>

> I absolutely get what you are saying regarding family but with mine, it's

> a little different. Two of my brothers don't handle these issues well at

> all. They're the type who doesn't like to go to funerals because it upsets

> them too much, etc. My eldest brother is more like me - he tends to face

> these things head-on. This means we worry more (or at least I think so) but

> we're able to deal with things better than the other two. But my eldest

> brother is a TV cameraman so is rarely in the country and when he is, he

> has so many things to take care of. Also, he lives in Sydney which is over

> two hours from here.

>

> The boys know that Mum needs extra help, yet one of my brothers is happy

> for her to pick up his kids from school every day, feed them, change them

> into their pyjamas, etc, and he and his wife often drop off the kids'

> clothes to be washed and ironed. It drives me crazy but Mum won't say no.

> She's always been the person to look after others but it's just ridiculous

> that my brother can do this.

>

> The main thing my mother needs help with at the moment (according to her)

> is with the garden and lawn-mowing. We've been in touch with the department

> that helped with their house modifications and they are going to organise

> garden maintenance which is great. I would do it myself only I have a

> bulging disc in my back so I'm finding it difficult to do anything too

> physical at the moment.

>

> A long story short, my brothers are well aware of the kind of help that's

> needed but they haven't come forward to help, well, not the youngest two at

> least. As for my older niece and nephew (22 and 23 year old), they've never

> had a great deal to do with my parents, mostly due to my sister-in-law's

> strained relationship with them. They've kept their distance all these

> years and when I asked if someone could come and stay with Dad while Mum

> and I were away for her operation in late January (for five days), they all

> flatly refused. So it's not like we haven't asked.

>

> Perhaps one day they will see that they missed out on valuable time with

> Dad (and Mum) but I suspect that will all come too late.

>

> Mum and I are pretty strong and I'm always seeking out help from

> government departments to see what help is available.

>

> But it's so helpful to be here, knowing that people like you have been

> through similar situations and understand what we're going through. It

> means so much :)

>

> I will keep you posted as to any new developments and/or issues!

>

> Tania....

>

> (Dad dx with PD in 2009, changed to LBD in 2010, then PDD in 2011.)

>

>

>

> > > > > >

> > > > > > > **

> > > > > > >

> > > > > > >

> > > > > > > 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.

> > > > > >

> > > > > >

> > > > > >

Link to comment
Share on other sites

Guest guest

I wonder if helping with the kids is a welcome distraction for your mom.

She may need them around. But encourage her to say enough when she has had

enough. Does she get paid for babysitting? I know a lot of people,

including my favorite niece, who think that Grandma should be happy to

spend time with the grandkids and don't even think about paying her. But

even a token could help your mom, or at least let her feel appreciated.

You are being awfully kind to your brothers. But don't let your older

brother off too easily. My brother-in-law had the same job (he called it

" broadcast news photographer " ) before he quit to attend seminary. I know

they get vacations. As far as the personal things he has to take care of,

don't you have things to take care of, too? Traveling that much, he must

be well aware of how much he can accomplish over the Internet. If it

involves another person, maybe he could combine time with your dad with

time with that person. And the stories your brother could tell your dad

would be, I think, really exciting for him. I don't want to come down hard

on the guy who seems to be your best hope for support, but I would think he

could arrange one week a year, if he tried. Meanwhile, is a weekly Skype

video call a possibility?

I hope your brothers understand what they are missing before it is too

late. It really is something special.

Give your mother a hug from me and tell her that she is not alone. You are

not alone, either.

Kate

> **

>

>

>

> Hi again Kate.

>

> I absolutely get what you are saying regarding family but with mine, it's

> a little different. Two of my brothers don't handle these issues well at

> all. They're the type who doesn't like to go to funerals because it upsets

> them too much, etc. My eldest brother is more like me - he tends to face

> these things head-on. This means we worry more (or at least I think so) but

> we're able to deal with things better than the other two. But my eldest

> brother is a TV cameraman so is rarely in the country and when he is, he

> has so many things to take care of. Also, he lives in Sydney which is over

> two hours from here.

>

> The boys know that Mum needs extra help, yet one of my brothers is happy

> for her to pick up his kids from school every day, feed them, change them

> into their pyjamas, etc, and he and his wife often drop off the kids'

> clothes to be washed and ironed. It drives me crazy but Mum won't say no.

> She's always been the person to look after others but it's just ridiculous

> that my brother can do this.

>

> The main thing my mother needs help with at the moment (according to her)

> is with the garden and lawn-mowing. We've been in touch with the department

> that helped with their house modifications and they are going to organise

> garden maintenance which is great. I would do it myself only I have a

> bulging disc in my back so I'm finding it difficult to do anything too

> physical at the moment.

>

> A long story short, my brothers are well aware of the kind of help that's

> needed but they haven't come forward to help, well, not the youngest two at

> least. As for my older niece and nephew (22 and 23 year old), they've never

> had a great deal to do with my parents, mostly due to my sister-in-law's

> strained relationship with them. They've kept their distance all these

> years and when I asked if someone could come and stay with Dad while Mum

> and I were away for her operation in late January (for five days), they all

> flatly refused. So it's not like we haven't asked.

>

> Perhaps one day they will see that they missed out on valuable time with

> Dad (and Mum) but I suspect that will all come too late.

>

> Mum and I are pretty strong and I'm always seeking out help from

> government departments to see what help is available.

>

> But it's so helpful to be here, knowing that people like you have been

> through similar situations and understand what we're going through. It

> means so much :)

>

> I will keep you posted as to any new developments and/or issues!

>

> Tania....

>

> (Dad dx with PD in 2009, changed to LBD in 2010, then PDD in 2011.)

>

>

>

> > > > > >

> > > > > > > **

> > > > > > >

> > > > > > >

> > > > > > > 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.

> > > > > >

> > > > > >

> > > > > >

Link to comment
Share on other sites

Guest guest

I wonder if helping with the kids is a welcome distraction for your mom.

She may need them around. But encourage her to say enough when she has had

enough. Does she get paid for babysitting? I know a lot of people,

including my favorite niece, who think that Grandma should be happy to

spend time with the grandkids and don't even think about paying her. But

even a token could help your mom, or at least let her feel appreciated.

You are being awfully kind to your brothers. But don't let your older

brother off too easily. My brother-in-law had the same job (he called it

" broadcast news photographer " ) before he quit to attend seminary. I know

they get vacations. As far as the personal things he has to take care of,

don't you have things to take care of, too? Traveling that much, he must

be well aware of how much he can accomplish over the Internet. If it

involves another person, maybe he could combine time with your dad with

time with that person. And the stories your brother could tell your dad

would be, I think, really exciting for him. I don't want to come down hard

on the guy who seems to be your best hope for support, but I would think he

could arrange one week a year, if he tried. Meanwhile, is a weekly Skype

video call a possibility?

I hope your brothers understand what they are missing before it is too

late. It really is something special.

Give your mother a hug from me and tell her that she is not alone. You are

not alone, either.

Kate

> **

>

>

>

> Hi again Kate.

>

> I absolutely get what you are saying regarding family but with mine, it's

> a little different. Two of my brothers don't handle these issues well at

> all. They're the type who doesn't like to go to funerals because it upsets

> them too much, etc. My eldest brother is more like me - he tends to face

> these things head-on. This means we worry more (or at least I think so) but

> we're able to deal with things better than the other two. But my eldest

> brother is a TV cameraman so is rarely in the country and when he is, he

> has so many things to take care of. Also, he lives in Sydney which is over

> two hours from here.

>

> The boys know that Mum needs extra help, yet one of my brothers is happy

> for her to pick up his kids from school every day, feed them, change them

> into their pyjamas, etc, and he and his wife often drop off the kids'

> clothes to be washed and ironed. It drives me crazy but Mum won't say no.

> She's always been the person to look after others but it's just ridiculous

> that my brother can do this.

>

> The main thing my mother needs help with at the moment (according to her)

> is with the garden and lawn-mowing. We've been in touch with the department

> that helped with their house modifications and they are going to organise

> garden maintenance which is great. I would do it myself only I have a

> bulging disc in my back so I'm finding it difficult to do anything too

> physical at the moment.

>

> A long story short, my brothers are well aware of the kind of help that's

> needed but they haven't come forward to help, well, not the youngest two at

> least. As for my older niece and nephew (22 and 23 year old), they've never

> had a great deal to do with my parents, mostly due to my sister-in-law's

> strained relationship with them. They've kept their distance all these

> years and when I asked if someone could come and stay with Dad while Mum

> and I were away for her operation in late January (for five days), they all

> flatly refused. So it's not like we haven't asked.

>

> Perhaps one day they will see that they missed out on valuable time with

> Dad (and Mum) but I suspect that will all come too late.

>

> Mum and I are pretty strong and I'm always seeking out help from

> government departments to see what help is available.

>

> But it's so helpful to be here, knowing that people like you have been

> through similar situations and understand what we're going through. It

> means so much :)

>

> I will keep you posted as to any new developments and/or issues!

>

> Tania....

>

> (Dad dx with PD in 2009, changed to LBD in 2010, then PDD in 2011.)

>

>

>

> > > > > >

> > > > > > > **

> > > > > > >

> > > > > > >

> > > > > > > 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.

> > > > > >

> > > > > >

> > > > > >

Link to comment
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