RE: Greetings!

[Guest guest]

Hi Tania, just finished reading your insightful email.

Please know how badly it causes me to know what you're going through right now.

, my husband of 47 years, now....was diagnosed with Alzheimer's about 8

years ago. was re-diagnosed with LBD close to 3 years, now. 

I, also, made a promise to both and to myself that I would try as hard as I

might and, barring unforseen circumstances; would certainly want to and attempt

to keep him here at the house in lieu of a nursing home. So far I have't even

been tempted to think about placement for .  While we do have challenging

days they number few and far between.

Until this past year I was 's sole caregiver.  In 2011 I hired our son,

Matt, to be his daily caregiver and Matt works about 40 hours a week here with

his dad  (This has been one of my Greatest Blessings, ever), please don't

attempt to try and do it on your own, it simply can't work!  's certainly

had his ups and his downs but I believe that finall,y we are on the right track

with his medicines, his various doctors, exercises, etc.

I am so happy, Tania, that you had the courage and took the time and effort to

reach out to this Family Group.  You will garner much information and wisdom,

so many varied ideas that are tried and proven true.  The people who post here

are phenomenal and love to share and support one another.  Please take special

care of yourself, too.

So sorry we had to meet via this medium.

Jo

Subject: Greetings!

To: LBDcaregivers

Date: Saturday, June 4, 2011, 6:43 PM

 

Hi all.

I've been meaning to introduce myself and thought 'why not now'?

My father was diagnosed with Parkinson's less than a year ago. He's been

steadily - and quite rapidly - going downhill. When I met his

neurologist for the first time a few months ago, I told my parents we

won't be needing his services anymore. He was very obviously not

interested in helping my father. I tracked down a neurologist at

Sydney's RPA Hospital who is also part of the BMRI (Brain & Mind

Research Institute) who specialises in Parkinson's. Last week, within

minutes of our visit to him, we knew we'd done the right thing. After

1.5 hours of questions and seeing Dad walk, he diagnosed my father with

LBD. He's advised that my father's Parkinson's meds (Sifrol is one) will

need to be reduced as they can, and most probably have, made Dad's

symptoms worse. In a few months, if Dad hasn't improved, he will put him

on a med for Alzheimers. He didn't say what that med was, but I guess we

will see. He mentioned REM Behaviour Disorder (Dad sometimes wakes at

2am and cooks himself breakfast) and when he mentioned the drug, I wrote

it down as (phonetically) 'clamazipan'. I saw a similarly-spelled drug

mentioned on here in a negative way so I'm hoping they're not one and

the same drug.

It's been very strange being given an LBD diagnosis after only just

coming to terms with the idea of Parkinson's and we have so much yet to

learn but I'm willing to do whatever I can to educate myself so that I

can help my father. Seeing him go from a fairly normal man in his 70s to

an 'old' man within the space of a couple of years has been

heartbreaking for myself, my mother and my brothers.

One of my brothers is a psychiatric nurse and even he hadn't heard of

LBD. Thankfully Dad has a great GP who is overseeing everything. Even

the LBD has to take a back seat at the moment as my father has heart

problems which are even more urgent. He also has prostate cancer (under

control with meds) and diabetes (also under control) but it seems that

LBD is the thing causing the most noticeable symptoms.

I'm reading every single message on here and will continue to do so.

We are all quite worried, not to mention fearful, of what lies ahead. We

promised Dad we would never put him into a nursing home. Has anyone else

been able to look after a loved one with LBD at home? If so, I'd be

interested to hear how that went.

Thank you for this group and I'm looking forward to getting to know you

all.

Peace.

Tania (Goulburn, NSW, Australia)

[Guest guest]

Dear Tania

It's lovely to see another Aussie in the group, though I am sorry that it

has been necessary for you to join us.

The website for this group has lots of good information among the Files.

However I will also send you, via your personal email, some of the

particular documents that I found most helpful.

My husband Jim had many Parkinson's type symptoms - stiffness of muscles,

rigidity of movement, falling over because the feet seemed stuck to the

ground; he also had the REM sleep disorder, which for Jim was when he would

act out his dreams - this involved moving his legs as though he were

running, kicking as though he were fighting with someone, punching with his

arms, and even chewing as though he were eating.

I was determined that Jim would not go to a nursing home. Thankfully I was

21 years younger than he was, so I had more energy reserves. I do not regret

doing this. When I was unable to leave Jim on his own, I did my shopping

over the internet. My friends were a great help, as my son lives in

Queensland so wasn't able to help directly.

Within the Australian context there are lots of avenues for help to keep

your father at home. I will outline these things to the group, just in case

there are more Australian members lurking out there!

I would encourage you to have your father assessed by the Aged Care

Assessment Team (ACAT) as soon as possible. The location of your ACAT team

will depend on the Area Health Service where your father lives. I gather he

must live in Sydney if he is going to RPA though I notice you are in

Goulburn.

You need this ACAT assessment in order to access a CACP (Community Aged Care

Package) which will allow you to get help from a community based

organisation such as Kincare. There is a waiting list for these packages so

the sooner you get on the list, the better. With a CACP, I was able to

receive 5 hours of help per week in the home - this included someone to come

and shower Jim twice a week, someone to come and provide domestic help (eg

cleaning, ironing) and also respite time away from Jim. Your case manager

discusses with you what services best suit your needs. This help is

subsidised by the government and I paid only $9.90 per hour. We were also

given, free of charge, the VitalCall personal emergency alarm system as part

of the package.

There is also an EACH (Dementia) package = Extended Aged Care in the Home

which gives 16 hours help per week but the waiting list is also very long

for this. You need to receive an ACAT assessment of " High level care " for

this. Sadly our name only came to the top two months after Jim had died so

we did not benefit from this extra help.

We were also able to get help from RNSH Aged Care Department with

occupational therapy and physiotherapy. The OT assessed our home and applied

for a grant which meant that we had the bathroom made accessible for a

wheelchair and we didn't have to pay any money. They also lent equipment so

we could 'try before you buy' such as walkers, bed rails, toilet surrounds

....

You can also access help through the Commonwealth Respite and Carelink

Centres (Phone 1800 052 222)

The Centrelink Carer Allowance is available to everyone who is the main

Carer. It's just over $50 per week but is better than nothing. It isn't

means tested or asset tested. Don't be put off by the large application

form!

If your father is receiving a Centrelink Aged Pension, then the main Carer

can also apply for the Carer Payment. This is means and asset tested, but

even a part payment is a great help, especially with the cheaper price for

medicines and bulk billing of medical bills for the Carer as well as the

patient.

There is also help available for incontinence aids through Medicare = CAPS

(Continence Aids Payment Scheme). Your dad would qualify because of an

eligible neurological condition. This pays up to $497 per year to purchase

incontinence pants etc.

You will probably find that the RPA Aged Care department runs a Carers

Course which will give you lots of information.

Your local council should also have an Aged and Disability Service Community

Worker. Ring the Council and ask for this person for information relating to

your area.

There is also the Medical Energy Rebate scheme through your electricity

supplier which gives you a refund of about $130 a quarter if you have to

have medical equipment installed. We were told by our doctor to install an

air-conditioning system because the heat affected Jim's postural

hypotension, so we qualified.

That's all I can think of for now. There's lots of help available, but often

you have to be proactive in finding it out.

All the best.

Elaine (61) from Sydney Australia (I live in Cammeray)

Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

Jim died peacefully in hospital on 12th February 2011.

[Guest guest]

Hi Tania-

My father is 7 years into a LBD diagnosis, and is now under hospice care in my

parent's home. We have been able to keep him at home using home health aides, a

few hours a day at first and now 8AM to 9PM. My mother is 88 and the physical

care he needed (incontinence and " activities of daily living " ) as well as his

declining mobility/balance issues required increasing hours as he progressed

further into LBD.

We have a hospital bed, wheelchair, walker, lift chair (recliner) and the most

important: remodeled a bathroom so that the shower has only a rubber seal to

wheel the shower chair over so he can be thoroughly bathed.

We are fortunate that his hallucinations/REM has been handled by Seroquel

(quetiapine) at night. While you will see caution against using clonazepam from

some caregivers, others find it to be greatly beneficial for their LBD loved

ones. It sounds like your doctor is knowledgeable about the potential for LBD

patients to have medication sensitivites, so if he thinks it would be

appropriate just " go low and go slow " when introducing the drug.

I have learned so much from this group, mostly by " lurking and learning " .

We are all with you in this journey.

Carol

Daughter of

>

> Hi all.

>

> I've been meaning to introduce myself and thought 'why not now'?

>

> My father was diagnosed with Parkinson's less than a year ago. He's been

> steadily - and quite rapidly - going downhill. When I met his

> neurologist for the first time a few months ago, I told my parents we

> won't be needing his services anymore. He was very obviously not

> interested in helping my father. I tracked down a neurologist at

> Sydney's RPA Hospital who is also part of the BMRI (Brain & Mind

> Research Institute) who specialises in Parkinson's. Last week, within

> minutes of our visit to him, we knew we'd done the right thing. After

> 1.5 hours of questions and seeing Dad walk, he diagnosed my father with

> LBD. He's advised that my father's Parkinson's meds (Sifrol is one) will

> need to be reduced as they can, and most probably have, made Dad's

> symptoms worse. In a few months, if Dad hasn't improved, he will put him

> on a med for Alzheimers. He didn't say what that med was, but I guess we

> will see. He mentioned REM Behaviour Disorder (Dad sometimes wakes at

> 2am and cooks himself breakfast) and when he mentioned the drug, I wrote

> it down as (phonetically) 'clamazipan'. I saw a similarly-spelled drug

> mentioned on here in a negative way so I'm hoping they're not one and

> the same drug.

>

> It's been very strange being given an LBD diagnosis after only just

> coming to terms with the idea of Parkinson's and we have so much yet to

> learn but I'm willing to do whatever I can to educate myself so that I

> can help my father. Seeing him go from a fairly normal man in his 70s to

> an 'old' man within the space of a couple of years has been

> heartbreaking for myself, my mother and my brothers.

>

> One of my brothers is a psychiatric nurse and even he hadn't heard of

> LBD. Thankfully Dad has a great GP who is overseeing everything. Even

> the LBD has to take a back seat at the moment as my father has heart

> problems which are even more urgent. He also has prostate cancer (under

> control with meds) and diabetes (also under control) but it seems that

> LBD is the thing causing the most noticeable symptoms.

>

> I'm reading every single message on here and will continue to do so.

>

> We are all quite worried, not to mention fearful, of what lies ahead. We

> promised Dad we would never put him into a nursing home. Has anyone else

> been able to look after a loved one with LBD at home? If so, I'd be

> interested to hear how that went.

>

> Thank you for this group and I'm looking forward to getting to know you

> all.

>

> Peace.

>

> Tania (Goulburn, NSW, Australia)

>

>

>

[Guest guest]

Oops!

Meant to send this to the whole group.

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Greetings!

Hi all.

I've been meaning to introduce myself and thought 'why not now'?

My father was diagnosed with Parkinson's less than a year ago. He's been

steadily - and quite rapidly - going downhill. When I met his

neurologist for the first time a few months ago, I told my parents we

won't be needing his services anymore. He was very obviously not

interested in helping my father. I tracked down a neurologist at

Sydney's RPA Hospital who is also part of the BMRI (Brain & Mind

Research Institute) who specialises in Parkinson's. Last week, within

minutes of our visit to him, we knew we'd done the right thing. After

1.5 hours of questions and seeing Dad walk, he diagnosed my father with

LBD. He's advised that my father's Parkinson's meds (Sifrol is one) will

need to be reduced as they can, and most probably have, made Dad's

symptoms worse. In a few months, if Dad hasn't improved, he will put him

on a med for Alzheimers. He didn't say what that med was, but I guess we

will see. He mentioned REM Behaviour Disorder (Dad sometimes wakes at

2am and cooks himself breakfast) and when he mentioned the drug, I wrote

it down as (phonetically) 'clamazipan'. I saw a similarly-spelled drug

mentioned on here in a negative way so I'm hoping they're not one and

the same drug.

It's been very strange being given an LBD diagnosis after only just

coming to terms with the idea of Parkinson's and we have so much yet to

learn but I'm willing to do whatever I can to educate myself so that I

can help my father. Seeing him go from a fairly normal man in his 70s to

an 'old' man within the space of a couple of years has been

heartbreaking for myself, my mother and my brothers.

One of my brothers is a psychiatric nurse and even he hadn't heard of

LBD. Thankfully Dad has a great GP who is overseeing everything. Even

the LBD has to take a back seat at the moment as my father has heart

problems which are even more urgent. He also has prostate cancer (under

control with meds) and diabetes (also under control) but it seems that

LBD is the thing causing the most noticeable symptoms.

I'm reading every single message on here and will continue to do so.

We are all quite worried, not to mention fearful, of what lies ahead. We

promised Dad we would never put him into a nursing home. Has anyone else

been able to look after a loved one with LBD at home? If so, I'd be

interested to hear how that went.

Thank you for this group and I'm looking forward to getting to know you

all.

Peace.

Tania (Goulburn, NSW, Australia)

[Guest guest]

Hi Tania,

We are caring for my mother in law in our home and she has advanced LBD with

Parkinson’s along with several other medical issues difficult to manage.

My mil lived in her own senior apartment 3 years with a live in caregiver

from Fiji who was both competent and very pleasant. It was a good match as

they both were into stylish clothing and window shopping and various other

activities. The last year however my mil declined a lot and was not

sleeping through the night and needing more and more help ambulating and so

on.

Her neurologist at UCSF Memory and Aging Clinic told us the least amount of

medicine the better as she is very sensitive to drugs. My mil is extremely

sensitive to any clonipin, diazapams, etc. in that class as are many with

LBD and Parkinson’s as well. I would urge you to be very careful with those

and see if there might be a better alternative. Often those are extremely

sedating and will make a person with this sleep most of the time – including

all day. We have decided on a different route of managing it. We

followed her neurologist’s advice to pursue “aggressive physical therapy”

and her primary care doctor has been very helpful in keeping her in physical

therapy over the last few years. Because of this my mil is still quite

strong and still able to stand and walk (with assistance for balance and

prompting to lift her feet, etc.). This has made a huge difference for her

in the course of this disease because she is still fairly strong and also it

had been a major part of each day’s activities so she slept better at night

and we did not have to use sedating medicine. Again perhaps we were lucky

that she responded this way – it doesn’t mean everyone will have the same

benefit. While we cut out a lot of drugs the local neurologist had her on

we are still using the Carb levo for the Parkinson’s 3x a day with no ill

effect and this helps her remain somewhat mobile. We also use a patch –

Exelon Patch which has been fantastic. Her neurologist had her start on

that immediately – first the small dose for three months then we went to the

full dose. That medicine makes a huge difference in her cognitive abilities

– it did from the beginning and still does even though she’s declining quite

a lot. We took her off of it for a week and she really changed and got

unclear. When we started it again she was her “regular” self within two

days. Some people have tried the pills and have had problems with them and

do ok with the patch. We are very fortunate that this patch medication is

working so well with no apparent side effects. We use trazadone at night to

help her sleep. We use a lot of tylenol – up to 1 gram every 6 hours – to

help pain because it does not give side effects. At night we use 1

hydrocodone and then if pain is an issue in another 4-6 hours we can give

her another. We are very lucky that she can tolerate hydrocodone without

apparent side effects. It actually makes her drowsy and does help pain so

she can sleep. My mil has problems with restless legs at times – very

painful. We use .125 mg of Mirapex at night and that almost always prevents

restless legs from being a problem. Occasionally we have to give her

another ½ tablet later in the night but it is rare.

We have had home health and advanced illness management the last 8 months

and are probably going to start hospice. We have a caregiver here now 24

hours because it helps US, especially me, not get overwhelmed and stressed.

My mil has a hospital bed, wheelchair, shower/tub transfer bench, commode

over the toilet, bedpans, diapers, extra absorbent pads for the diapers.

Her room, like our home, is very small but I have furniture that fits it and

serves the purposes needed for basic things and a few large drawers for

pictures, cards, photo albums. I put her memorabilia all over on shelves –

the ceramic figures she’s made and pictures of her family and pets and so

on. She has a flat screen tv and a dvd player and two chairs in her room

so we can watch a movie or show with her and also “skype” with relatives (we

hook the laptop to the tv so she can see better). I have a little linen

chest with glass doors with supplies neatly arranged so we all know where

things are and can use/restock them easily. It seems pretty barebones to

me and I could not fit all her stuff in there by any means – however it’s

much better and more personal than a nursing home room and she likes it a

lot. For now we have her hospital bed alongside one wall and I put a thin

sheet of bulletin board material on the wall and have all kinds of pictures

of her family, pets, places we have gone and so on. So she has those with

her when she’s in bed.

The one thing we do not have yet is a ramp in and out of our home – which

has 7 steps from the walk way to the front porch. We put special hinges on

the bathroom door which made it open wider by about 2 inches so her

wheelchair can fit in. We put a handheld shower with a water shut off lever

in the tub/shower which makes bathing much easier for everyone.

My mil now needs help for everything and has liquids thickened with a

powdered thickening agent. She eats a semisoft mechanical diet but likes to

crunch on crackers and chips occasionally. Since we are thickening her

foods and have the special diet AND a trained person feeding and monitoring

her eating to make sure she chews and swallows, we have had no aspiration

pneumonia. It doesn’t mean it won’t every happen but for now this strategy

is working. We really have to push water with her because she is prone to

uti’s (urinary tract infections). I also have cranberry in her pills and

use a small amount of mannose and ¼ tablet of septra ds each day as the

strategy to avoid bladder infections. So far we have been doing this for

two months and she is ok but that could change any moment as well. She was

getting a new, bad uti every four weeks before we adopted this strategy.

She does not sleep well at night for some reason we have yet to figure out.

When she goes to sleep she gets itchy and won’t go to sleep and calls loudly

help me. Sometimes she does this most of the night. Sometimes she can do

this for 3-4 nights and is a very sad looking zombie during the day. We

follow the doctor’s directions to keep her awake in the day. Eventually she

does sleep. Sometimes I think she doesn’t know how to fall asleep. When I

sit with her I tell her to close her eyes. If she keeps her eyes closed she

is snoring very soon.

I think we have a long way to go with this disease process with my mil

although they say she is eligible for hospice. My mil is a strong

determined person and a survivor and doesn’t want to leave her son. So I

think she will be with us as long as she can be. The most difficult thing

for us was finding competent caregivers to help with her care. You want at

least two so if one wants to take time off you have a back up. Also you

want people who have experience with Dementia care and training. Here in

the states we can do background checks and ask for references and so on.

We have two women from Fiji helping my mil now. Both have all their records

legal and extensive training and background and fingerprints and stellar

references. They have taught me a lot about dementia and their approach to

it is gentle and compassionate. We had to go through a lot of caregivers -

American, Fijian and Mexican – before we found two that are a good fit for

us and it is a true blessing. Having good caregivers takes a huge amount of

stress off of us all. My mil does not feel so ashamed that she is

incontinent or that she needs help and it helps preserve some of her

dignity. She has never wanted to be a burden to her children so having

someone to help her makes her feel like she’s not being a burden. The

second hardest part of caring for my mil in our home is affording it.

Paying caregivers is very expensive and though the two we found are charging

less than they usually ask for because the want to help us keep my mil here

and out of a nursing home, it is still very costly and we scramble each

month to scrap money together for 2 pay periods. Anything you can do to

preplan for expenses like this will pay off big time down the road.

The third most difficult thing has been my husband and his sister agreeing

on how to best care for my mil. My sister in law was executer of my mil’s

trust – she controlled the little amount of money she had and wanted to put

her into a board and care home and then transition her into a nursing home.

We could not agree on a board and care home (none of them in our area seemed

to be geared for parkinson’s and dementia, let alone her other medical

issues). They didn’t have practical, accessable seating, had ceiling fans

in the bedrooms (causing shadows which confused my mil), had “call buttons”

that were too small and not attached to anything – just some remote wireless

button that looked the size of a lipstick – and not something my mil could

find and so on. My sister in law, who lives out of state, thought these

were all very nice and clean – which they all were – however they had no

awake night time staff and we knew my mil would quickly have a serious fall

or some mishap and hasten her to a nursing home. So my husband and her

argued a lot about this.

Hopefully your family can meet and talk and decide what the best strategy

for providing for your father’s needs and well being will be and how to make

that happen together with everyone on board with the plan. If you want to

share this email with members of your family to help them further

understand, you are most welcome to.

As difficult as this is at times, I would much rather my mil be here with us

than in any nursing home. It is a blessing to have her with us and it has

brought us all closer as a family. My husband, who has taken care of her

for almost 30 years, feels much better knowing she’s well cared for and also

he has more time with her. I enjoy eating breakfast with her and doing

things with her through the day. She can’t remember a lot now but that’s

ok we stick to what she can remember. We watch cooking shows together and

she helps me cook the evening meal at times. Also helps folding laundry

(small towels, t shirts, socks) and sometimes still can peel vegetables.

Before we had caregiving help, when she couldn’t sleep I’d sometimes just

get her up and take her to the kitchen and we’d wash some dishes together

(she didn’t know I took them from the cupboard and put them in the sink) –

that made her feel better somehow and when we were done she was able to

sleep. I know her history – so when she wakes up in the middle of the night

telling me a strange man – the one in that picture – was in her room I know

it was her husband she was seeing and am able to help her recognize that and

eventually be happy that she saw her husband. When she wants to go home

and doesn’t know where she is I can help her “get back” by talking with her

about the items in her room – the ceramics she’s made, the prizes she got

for them, the pictures of family and drawings from students she taught many

years ago. Only very recently have we had to use any anti anxiety

medication (and just a tiny amount at that) and mostly when she has anxiety

attacks when I take time to sit and talk things over with her – or find a

distraction to head it off - that is all she needs. That is a huge

difference between home and a nursing home and it means less drugs. We

all know how to feed her to prevent aspiration, how to use a gait belt to

avoid falling injuries, how to do pericare each morning to keep her clean

and free of rashes and many other things. Her neurologist at the Memory

and Aging clinic explained that the less medicine the better and we went

with that and so far, 3 and a half years post diagnosis and a huge decline,

he is right.

If your father gets up to cook himself breakfast sometimes – does he do this

safely? Is he confused and thinks it’s time to get up or is he just hungry?

What has been done as a result? Has he been asked not to do this and can he

refrain from it or does he forget? I would strongly avoid drugs with

“azipam” – they can be strongly sedating and cause other serious problems,

sometimes irreversible. My mil uses 25 mg of trazadone at night. It’s an

antidepressant and usually given in much higher doses but 25 mg for her is

fine and does help her feel sleepy. Rarely we have a lot of agitation at

night and I have leeway to give her another ½-1 tablet more. I’ve found

very often the behavior issues can be managed better by taking the time to

talk about things. That has worked for us and my mil on a lot of fronts.

Sometimes behavior things are about something our loved ones cannot clearly

communicate – so they come out sideways in behavior. When my mil groans I

know she needs something or is uncomfortable even though she denies it – and

it takes some talking to learn what’s going on. Rarely can she tell me

straight up that something hurts and sometimes she tells me something hurts

but really she needs to go to the bathroom.

Well this is a lot, sorry to bombard you. Hope it helps and bless you for

helping your father. Remember to be sure to have some help with his care at

least as respite so you have a break from HAVING to be on duty.

Dorothy

Sonoma Co., California

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of aussiebin

Sent: Saturday, June 04, 2011 5:43 PM

To: LBDcaregivers

Subject: Greetings!

Hi all.

I've been meaning to introduce myself and thought 'why not now'?

My father was diagnosed with Parkinson's less than a year ago. He's been

steadily - and quite rapidly - going downhill. When I met his

neurologist for the first time a few months ago, I told my parents we

won't be needing his services anymore. He was very obviously not

interested in helping my father. I tracked down a neurologist at

Sydney's RPA Hospital who is also part of the BMRI (Brain & Mind

Research Institute) who specialises in Parkinson's. Last week, within

minutes of our visit to him, we knew we'd done the right thing. After

1.5 hours of questions and seeing Dad walk, he diagnosed my father with

LBD. He's advised that my father's Parkinson's meds (Sifrol is one) will

need to be reduced as they can, and most probably have, made Dad's

symptoms worse. In a few months, if Dad hasn't improved, he will put him

on a med for Alzheimers. He didn't say what that med was, but I guess we

will see. He mentioned REM Behaviour Disorder (Dad sometimes wakes at

2am and cooks himself breakfast) and when he mentioned the drug, I wrote

it down as (phonetically) 'clamazipan'. I saw a similarly-spelled drug

mentioned on here in a negative way so I'm hoping they're not one and

the same drug.

It's been very strange being given an LBD diagnosis after only just

coming to terms with the idea of Parkinson's and we have so much yet to

learn but I'm willing to do whatever I can to educate myself so that I

can help my father. Seeing him go from a fairly normal man in his 70s to

an 'old' man within the space of a couple of years has been

heartbreaking for myself, my mother and my brothers.

One of my brothers is a psychiatric nurse and even he hadn't heard of

LBD. Thankfully Dad has a great GP who is overseeing everything. Even

the LBD has to take a back seat at the moment as my father has heart

problems which are even more urgent. He also has prostate cancer (under

control with meds) and diabetes (also under control) but it seems that

LBD is the thing causing the most noticeable symptoms.

I'm reading every single message on here and will continue to do so.

We are all quite worried, not to mention fearful, of what lies ahead. We

promised Dad we would never put him into a nursing home. Has anyone else

been able to look after a loved one with LBD at home? If so, I'd be

interested to hear how that went.

Thank you for this group and I'm looking forward to getting to know you

all.

Peace.

Tania (Goulburn, NSW, Australia)

[Guest guest]

Tania,

> We are all quite worried, not to mention fearful, of what lies ahead. We

> promised Dad we would never put him into a nursing home. Has anyone else

> been able to look after a loved one with LBD at home? If so, I'd be

> interested to hear how that went.

My Dad stayed at home to the end, as he wanted. However, it took a lot

of help and was even more expensive than a nursing home. At first, he

had helpers who came in to make meals, shop, clean, etc. When he got

confused while he was alone, he had a single button to push to call me.

That worked for a year or so. At the end, he needed someone with him

all the time and two people for bathing. Even though he was in the same

bedroom he'd slept in for 45 years, he often said he wanted to go home.

The physical and psychological cost of caring for a demented loved one

is enormous. We were lucky that Dad was generally very pleasant and

only threatened his caregivers a few times. Others on the list were beaten

by their spouse or parent. Often patients accuse their caregivers of stealing

and abusing them in other ways.

What I'm trying to say is that you should consider your father's wishes,

but also consider the impact his care will have on the rest of your family.

Best wishes,

Ann

[Guest guest]

This is great advice Ann and so true.

What may seem easy now turns out to be very expensive and hard to deal with

later.

I was always going to keep Jim home. He lived home for several years. Jim was

first dx w/ Parkinsons and around 1996 things began to change gradually until

2000 when confusion, hallucinations, and delusions showed up. I still kept him

home until 2006 when he attempted to kill me twice when he was delusional and

I could no longer handle him or afford to keep him home. Not only the cost of

the care, but he was freezing even in summer when it was in the 100s outside and

I had to keep the heat running. The bill was over $200.00 monthly and I had him

in jackets, hats, blankets and heat warmers and still he was cold.

He would no longer shower for anyone, it was a battle and not worth the battle.

He needed to be in skilled nursing where they were equipped to handle getting

him in the shower and keeping him warm constantly. He could be very aggressive

in keeping from the shower. You never know how the tides are going to turn. I

did learn for me that when I thought times were tough, as the disease would

progress what I thought was tough earlier was nothing at all compared to what I

was dealing with later and I would have taken it all back in the earlier stages

if I could, even though I thought I really had it hard then. It's all relevant

to where you are in the disease. Jim was in the nursing home for 5 years before

he died. In the early years there I would bring him home on weekends and we

would have great visits. I would pick him up Friday evening and bring him back

on Sunday evening. I made it very clear to him if he did not go back to the

nursing home when it was

time, it would be his last trip home and he cooperated in going back each time.

The real thing that stopped the trips home was he began to open the car door

while I was driving and after the first time that happened I made a U-Turn and

brought him back to the nursing home and he didn't come home again after that

episode, it became too dangerous to make the trip.

If you have a lot of family support and help, it is doable. I did not have

support and help. It was me and caregivers and finally the nursing home.

Subject: Re: Greetings!

To: LBDcaregivers

Date: Monday, June 6, 2011, 10:50 AM

 

Tania,

> We are all quite worried, not to mention fearful, of what lies ahead. We

> promised Dad we would never put him into a nursing home. Has anyone else

> been able to look after a loved one with LBD at home? If so, I'd be

> interested to hear how that went.

My Dad stayed at home to the end, as he wanted. However, it took a lot

of help and was even more expensive than a nursing home. At first, he

had helpers who came in to make meals, shop, clean, etc. When he got

confused while he was alone, he had a single button to push to call me.

That worked for a year or so. At the end, he needed someone with him

all the time and two people for bathing. Even though he was in the same

bedroom he'd slept in for 45 years, he often said he wanted to go home.

The physical and psychological cost of caring for a demented loved one

is enormous. We were lucky that Dad was generally very pleasant and

only threatened his caregivers a few times. Others on the list were beaten

by their spouse or parent. Often patients accuse their caregivers of stealing

and abusing them in other ways.

What I'm trying to say is that you should consider your father's wishes,

but also consider the impact his care will have on the rest of your family.

Best wishes,

Ann

[Guest guest]

Janet,

Wow, your experience really puts mine in perspective. I can't believe your

loved one lasted 5 years in a nursing home. I can't even fathom that right

now. Have been feeling guilty putting mom in a dementia facility last

Wednesday - still uncertain if it's the best place for her. When she was

herself she always said she never wanted to be a burden on her children, but

now she's demanding and doesn't understand why we can't do everything for

her. We did the whole round the clock care thing in her home. Hiring

caregivers was a mixed bag. Some were very capable, but many would not

always show up and sometimes never bothered to call, some slept while they

were there, jewelry and things started disappearing, and it was very

costlyl. We had one person who wanted to be a " live in " . I hired her for

a trial period and she left after two days. Couldn't handle the lack of

sleep and the intense amount of care my mother needed.

You're right too about how hard you think each stage is. This is a

terrible disease. Reading all the stories gives me hope, but also makes

me worry how much worse it's going to get. I hope they find a cure for

dementia.

Most of my friends don't want to hear what's happening in my life. Even

though I'm sorry for all of you too, it is a comfort knowing others can

understand.

God Bless all of you and thanks for sharing.

Marcie

PS I've never done a group website before. Hope I'm doing it correctly.

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Janet Colello

Sent: Monday, June 06, 2011 3:26 PM

To: LBDcaregivers

Subject: Re: Greetings!

This is great advice Ann and so true.

What may seem easy now turns out to be very expensive and hard to deal with

later.

I was always going to keep Jim home. He lived home for several years. Jim

was first dx w/ Parkinsons and around 1996 things began to change gradually

until 2000 when confusion, hallucinations, and delusions showed up. I still

kept him home until 2006 when he attempted to kill me twice when he was

delusional and I could no longer handle him or afford to keep him home. Not

only the cost of the care, but he was freezing even in summer when it was in

the 100s outside and I had to keep the heat running. The bill was over

$200.00 monthly and I had him in jackets, hats, blankets and heat warmers

and still he was cold.

He would no longer shower for anyone, it was a battle and not worth the

battle. He needed to be in skilled nursing where they were equipped to

handle getting him in the shower and keeping him warm constantly. He could

be very aggressive in keeping from the shower. You never know how the tides

are going to turn. I did learn for me that when I thought times were tough,

as the disease would progress what I thought was tough earlier was nothing

at all compared to what I was dealing with later and I would have taken it

all back in the earlier stages if I could, even though I thought I really

had it hard then. It's all relevant to where you are in the disease. Jim was

in the nursing home for 5 years before he died. In the early years there I

would bring him home on weekends and we would have great visits. I would

pick him up Friday evening and bring him back on Sunday evening. I made it

very clear to him if he did not go back to the nursing home when it was

time, it would be his last trip home and he cooperated in going back each

time. The real thing that stopped the trips home was he began to open the

car door while I was driving and after the first time that happened I made a

U-Turn and brought him back to the nursing home and he didn't come home

again after that episode, it became too dangerous to make the trip.

If you have a lot of family support and help, it is doable. I did not have

support and help. It was me and caregivers and finally the nursing home.

From: Ann on <aharrison@...

<mailto:aharrison%40ibphoenix.com> >

Subject: Re: Greetings!

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Monday, June 6, 2011, 10:50 AM

Tania,

> We are all quite worried, not to mention fearful, of what lies ahead. We

> promised Dad we would never put him into a nursing home. Has anyone else

> been able to look after a loved one with LBD at home? If so, I'd be

> interested to hear how that went.

My Dad stayed at home to the end, as he wanted. However, it took a lot

of help and was even more expensive than a nursing home. At first, he

had helpers who came in to make meals, shop, clean, etc. When he got

confused while he was alone, he had a single button to push to call me.

That worked for a year or so. At the end, he needed someone with him

all the time and two people for bathing. Even though he was in the same

bedroom he'd slept in for 45 years, he often said he wanted to go home.

The physical and psychological cost of caring for a demented loved one

is enormous. We were lucky that Dad was generally very pleasant and

only threatened his caregivers a few times. Others on the list were beaten

by their spouse or parent. Often patients accuse their caregivers of

stealing

and abusing them in other ways.

What I'm trying to say is that you should consider your father's wishes,

but also consider the impact his care will have on the rest of your family.

Best wishes,

Ann

[Guest guest]

Yes, there is really no way to tell how it’s going to go. We are lucky in so

far my mil is not violent or abusive. That could change any moment. She has

had short tantrums and once made a move like she wanted to bite my arm and

that’s all… so far. But even still it is taking a toll on us because she

doesn’t sleep, sometimes for 3-4 nights in a row. If we lived in town I’m

sure the police would be knocking wondering why someone was yelling for help at

3am.

I thought I could do part of it and hire a caregiver to share the load but it

really ran me down physically and mentally. Even with someone else doing the

heavy stuff the burden is a lot and I am fighting something – maybe

depression? - pretty much constantly. I honestly don’t feel like I can

schedule anything because there is always something that needs to be addressed

or directed. Today I had a doctor appointment but when I went to leave she

had a panic attack and I had to get her calmed down. So I was late and

rescheduled to tomorrow afternoon. If my mil got violent or abusive we would

not be able to manage and she would have to be cared for in a facility. The

caregiving full time costs $6600.00 a month and is sapping our savings at a time

we need to be saving a lot and getting ready to retire. Very often families run

out of funds also and have no other choice than to place them in a facility.

That’s so hard on the family – but what can be done if a person isn’t

independently wealthy? Just remember to do your best and be satisfied with

this.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Monday, June 06, 2011 12:26 PM

To: LBDcaregivers

Subject: Re: Greetings!

This is great advice Ann and so true.

What may seem easy now turns out to be very expensive and hard to deal with

later.

I was always going to keep Jim home. He lived home for several years. Jim was

first dx w/ Parkinsons and around 1996 things began to change gradually until

2000 when confusion, hallucinations, and delusions showed up. I still kept him

home until 2006 when he attempted to kill me twice when he was delusional and I

could no longer handle him or afford to keep him home. Not only the cost of the

care, but he was freezing even in summer when it was in the 100s outside and I

had to keep the heat running. The bill was over $200.00 monthly and I had him in

jackets, hats, blankets and heat warmers and still he was cold.

He would no longer shower for anyone, it was a battle and not worth the battle.

He needed to be in skilled nursing where they were equipped to handle getting

him in the shower and keeping him warm constantly. He could be very aggressive

in keeping from the shower. You never know how the tides are going to turn. I

did learn for me that when I thought times were tough, as the disease would

progress what I thought was tough earlier was nothing at all compared to what I

was dealing with later and I would have taken it all back in the earlier stages

if I could, even though I thought I really had it hard then. It's all relevant

to where you are in the disease. Jim was in the nursing home for 5 years before

he died. In the early years there I would bring him home on weekends and we

would have great visits. I would pick him up Friday evening and bring him back

on Sunday evening. I made it very clear to him if he did not go back to the

nursing home when it was

time, it would be his last trip home and he cooperated in going back each time.

The real thing that stopped the trips home was he began to open the car door

while I was driving and after the first time that happened I made a U-Turn and

brought him back to the nursing home and he didn't come home again after that

episode, it became too dangerous to make the trip.

If you have a lot of family support and help, it is doable. I did not have

support and help. It was me and caregivers and finally the nursing home.

From: Ann on <aharrison@... <mailto:aharrison%40ibphoenix.com> >

Subject: Re: Greetings!

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Monday, June 6, 2011, 10:50 AM

Tania,

> We are all quite worried, not to mention fearful, of what lies ahead. We

> promised Dad we would never put him into a nursing home. Has anyone else

> been able to look after a loved one with LBD at home? If so, I'd be

> interested to hear how that went.

My Dad stayed at home to the end, as he wanted. However, it took a lot

of help and was even more expensive than a nursing home. At first, he

had helpers who came in to make meals, shop, clean, etc. When he got

confused while he was alone, he had a single button to push to call me.

That worked for a year or so. At the end, he needed someone with him

all the time and two people for bathing. Even though he was in the same

bedroom he'd slept in for 45 years, he often said he wanted to go home.

The physical and psychological cost of caring for a demented loved one

is enormous. We were lucky that Dad was generally very pleasant and

only threatened his caregivers a few times. Others on the list were beaten

by their spouse or parent. Often patients accuse their caregivers of stealing

and abusing them in other ways.

What I'm trying to say is that you should consider your father's wishes,

but also consider the impact his care will have on the rest of your family.

Best wishes,

Ann