Re: Things are getting more and more difficult

[Guest guest]

Hi Tania,

Hang in there. You are not alone.

Sending you strength from NY,

Helene in NY

(Mom 78, about 12 years with LBD....)

>

> 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....

>

[Guest guest]

Tania,

Sorry to read what you and your family are going through. Can your family

afford some in-home assistance for your father so your mom can leave the house

daily?

I had a piriformis muscle problem for about 4 months, so I can relate to the

" pain in the butt " feeling your father has. When I sat, I often had an ice pak

under that cheek, which helped greatly. The PT had me stretch several times a

day with specific stretches that isolated that muscle. And the PT had me

strengthen the surrounding muscles. I also leaned against a wall with a tennis

ball to self-massage the piriformis muscle (it's in pretty deep). Four months

later, I have very little pain when sitting. Whether someone with PDD could do

all that, I don't know.

My personal opinion is that your dad shouldn't take Warfarin both due to the

risk of bleeding from falls and the need to monitor closely one's diet.

Robin

>

....

> 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....

>

[Guest guest]

Thanks, as always, Elaine.

You're right - one of the hardest things is not knowing what lies ahead. I feel

like the blind leading the blind!

We are bringing Dad up to Macquarie Uni in April. I'm hoping perhaps you could

come and meet us for a coffee?

Tania.

>

> 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

>

>

>

>

>

>

>

>

[Guest guest]

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.

> > >

> > >

> > >

[Guest guest]

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.

> > >

> > >

> > >

[Guest guest]

Dear Tania

It would be wonderful to meet you when you come to Macquarie Uni. I can

drive over to meet you there. Just let me know the date and I will hope that

my diary is clear, though I have a pretty flexible life at the moment. The

only commitments I cannot change are Thurs 19th April in the morning and

Monday 23rd at lunchtime.

Tania, your mother is so fortunate to have such a supportive daughter. I'm

really looking forward to meeting you.

Have you tried Melatonin to help your dad sleep through the night?

Jim was also waking up very frequently during the nights and we tried a

range of drugs which would work intermittently.

I have just searched in the collection of Messages on the Group on the

website. Rather than repeat myself here, if you go to these Message #s, you

may find some helpful information that might work for you. It gives you an

overview of some of my journey with Jim and Lewy, especially with this

problem of getting up so often during the night. The website allows you to

search for the Message #.

96720; 96769; 96787; 96826; 97059; 97004

I can really identify with your mother. I slept with Jim every night unless

he was in hospital, and then for the last week of his life, I " slept " next

to his hospital bed at RNSH so I could help the staff turn him every 2-3

hours.

I also didn't want to take the respite available because I knew that if Jim

went to a strange place, it would make him so confused and upset that he

would have gone backwards and that the extra effort stabilising him after

the respite would undo any positive impact it might have had for me.

I used to make up for the disturbed nights by sleeping in the next morning.

For some reason, as soon as it was daylight, Jim would sleep well ... so I

would also sleep and rest in bed with him. Some days I didn't get up until

10 or 11 am.

However, if I were your mother, I would be taking you up on the offer of

staying the night! I didn't have anyone around to do that for me.

All the very best and hopefully ... " see you soon "

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

[Guest guest]

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.

> > > > >

> > > > >

> > > > >