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]

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]

Tania, I'm really sorry to hear about your father. You are so right about what

you can be sure of with this disease. Every day is a challenge and we never know

what the next day will bring. I've had a horrible week with my mom, and was

blessed with her waking this morning in a much better condition, thank God.

 

I found this group a few years back and have been away for awhile myself, but

came back because of the wealth of knowledge here and the people who are ready

to listen when times get tough. Only those that have gone, or going, through

this can relate to us.

 

Much luck with your dad, and thanks for sharing, you never know when something

you share will be helpful to others.

Robin Green

Loving daughter of Bobbie

Diagnosed with LB May 2008

To: LBDcaregivers

Sent: Saturday, March 24, 2012 6:20 AM

Subject: Things are getting more and more difficult

 

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]

Hi, Tania.

My mom took Warfarin for about 4 years with no adverse effects (that we

could identify). When she began palliative care, we took her off it, along

with all other meds that were life prolonging. Our concern at that point

was her comfort, not lengthening her life with LBD.

Other than the falls, how is your dad? I learned that it is possible to be

in even the late stages of LBD and still be " there. " At least some of the

time. Before you decide to not use Warfarin, I'd like to suggest some of

these things to consider.

- *Is your dad still in such a condition that he (and you) is not ready

for palliative care? If prolonging life is still a valid option, consider

using the Warfarin.*

- *A stroke from a blood clot can be devastating and still not end the

life of the patient, LBD, PDD or not. How much would a stroke exacerbate

your dad's condition?*

- *My mom fell, got abrasions, cuts, etc. while on Warfarin and did not

bleed excessively. Dosage would, I think, make a difference.*

- *How much are you willing to risk and what is the lesser of what may

be two evils? If the blood clot would not, with assurance, end your dad's

life, are you still willing to risk it?*

- *What are you, your dad, your mom ready to accept for your dad's

quality of life? Are you all ready to let go?*

Decisions like medications and even surgery have to be made based on your

own circumstances. Not just your dad's condition and desires, but also

what your family is ready to handle. Consider all of the ramifications of

taking and of not taking the medication and consider what you are ready to

accept and deal with/care for ongoing. Then this needs to be your, and

especially your mom's, decision. There is no wrong decision, only a

decision and acceptance and coping with what happens after that.

We're here when you need us. Don't hesitate to keep in touch.

Kate

> **

>

>

> 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]

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]

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.

>

>

>

[Guest guest]

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.

>

>

>

[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

>

>

>

>

>

>

>

>