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Hi Kath;

It's so great to hear from you - a fellow Torontonian - again.

I agree with you about the many complications involved with bringing

home a loved one with LBD. It is so much work. During the weekends

when my dad is home, my mom doesn't sleep a wink! It's funny how she

goes to bed at about 7 pm on Sunday nights and sleeps til 5 am the

next day. She'll never admit it's overwhelming but I know it is.

How is your mom doing? More of the same ups and downs I imagine. I

know how stressful this is for you living right next door to her yet

I wish my parents lived closer to us so that I could pop over more

regularly. I find it hard to get there each day on the weekend since

the kids are so busy.

Well, I'm late for work or will be if I don't get to it quickly.

Thanks for the message Kath,

~Abby

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Hi Abby

I think I replied to this but these days who knows? Last week I had a terrible

week. I missed an appointment, locked my keys in the car two days in a row,

lost my cell phone and then just 15 min. before I was going away for the weekend

my sewer backed up. My daughter and I got about 20 towels and started sopping

up the water. The couple that was supposed to drive me (because my husband had

to work at the last minute) jumped in and helped too. I was crying my eyes out,

wondering why I couldn't get a break, just once...anyway, the water got sopped

up, my son came over and stayed until the sewer guy came and routed out the

drain, and I went off to cheery Niagara on the lake. It was a wonderful weekend

and I do feel somewhat refreshed (but I really didn't want to come home). Oh

well back to the bump and grind... mom has already called me so I have to go in

there and fix her thermostat...she's cold...

Kath

abbybb1 wrote:

Hi Kath;

It's so great to hear from you - a fellow Torontonian - again.

I agree with you about the many complications involved with bringing

home a loved one with LBD. It is so much work. During the weekends

when my dad is home, my mom doesn't sleep a wink! It's funny how she

goes to bed at about 7 pm on Sunday nights and sleeps til 5 am the

next day. She'll never admit it's overwhelming but I know it is.

How is your mom doing? More of the same ups and downs I imagine. I

know how stressful this is for you living right next door to her yet

I wish my parents lived closer to us so that I could pop over more

regularly. I find it hard to get there each day on the weekend since

the kids are so busy.

Well, I'm late for work or will be if I don't get to it quickly.

Thanks for the message Kath,

~Abby

Welcome to LBDcaregivers.

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  • 1 month later...

Kathy-

Yes, yes, I did feel despair while taking care of my dad. I

had no one to consult, no one to bounce ideas off, no one

to turn to. When decisions were made it was me and only

me. Some times, and that was rare, my brother was there

to help. I had called him to see dad September 17, 2002.

Dad had quit eating for days before that and I told my brother

if he wanted to see dad alive I suggested he get there soon.

He did make it to the hospital, and it was then a meeting

was called with several doctors (one a psychiatrist), dietary,

nurses, and several other people. Dad passed away 3 days

later. So, as you can see, I can even name the dates when my brother was

available, otherwise, I did everything myself. I know how the whole gets

longer and darker, yet at the same time, 'where there is life, there is hope

.. Once our loved ones are

gone there is no turning back. Sure, I cried, I prayed, I was

exhausted at times, yet during those times I was also thankful

that my dad was still with me, I could look at his big beautiful

blue eyes and help him through his struggles. Compared to

the alternative, what dad and I were going through seemed

so small.

In my babbling, I think what I am trying to say is you can and

will make it through this. Try to use your energy in a positive

way. If you need to take a few days off, do it. Refuel yourself

so that you can face these days positively. Continue to come

to the group and vent. Scream on here, and if you want, you

may email me personally. Also, if you want, you may email

your phone number to me and I will call you so you to assure

you you aren't alone.

I am still thinking of you, still keeping you in my prayers as

well...there is power there!

Hugs to you Kath-

Sandie

-- Mom has a new cast and a new attitude

Well it was a lovely day in Lewyland...apparently the codeine worked in

cohorts with Lewy and we had " angry, nasty mom " this morning. She wasn't

taking the pills, wasn't eating, and was putting up a terrible fight. I

tried to get her to take the pills but she outright refused. The battle

ensued as I was worried about pulling an all day long ordeal in the

emergency again. I tried to stick the pills down her mouth but she battled

me all the way. She grabbed on to my hair, my glasses and pushed the water

at me. She spitted and tried to kick and all other lovely things. I was

unable to get the tylenol for arthritis in her, but the reminyl and

parkinson meds sort of disolved in her mouth while she was trying to bite me

with only her top teeth in place. She had removed the bottom ones and

seemed confused about how to get them back in but wouldn't let me help at

all. It was so like a two year old saying I want to do it MYSELF!! Yet

sadly she wasn't able to. We had to change her

as she had spilled her water and the coffee and whatever else when she

kicked the tray over but eventually we got her there.

She yelled at the volunteer who got her wheelchair. Told him " what are you

doing there with your legs hanging down? " She picked fights with other

people in the waiting room because they looked over at her. One ladie came

in and walked over to the reception. Mom says " what does she think she is

doing looking like my dead sister Gloria? " I must admit there were some

pretty funny comments made if it weren't so sad a situation.

The wait wasn't too bad and Jim (my hero on the desk of the fracture clinic)

came to emergency to talk to the nurse about getting an orthopaedic resident

I don't know exactly what happened but the next thing we were in the

fracture clinic and mom's cast was being removed. That was fun...she was

yelling and screaming while the great guy on the saw continued to talk

calmly to mom, as she cursed him, he apologized continuously and kept saying

" oh yes, of course, I will do whatever you say but I have to take this off

because my job is to help you... "

Overall it was a pretty good experience...too bad mom started out behaving

badly as everyone was really so very nice to her and me.

They put on a fiberglass cast. Hard so she cant remove it but at the same

time light. They offered her lunch which she rejected each thing one by one

Eventually she ate a bite or two of the soup and that was that. I talked

to the Geriatric Nurse and we talked about the process of nursing homes and

that I should put mom on the list right away. It is a two year wait but as

she said it is better than waiting until there is a crisis where they might

place her anywhere in the city. I will get the forms done, although I still

feel that things will turn around. I think that being prepared is a good

idea as I don't want her in a place that is awful. So I have my homework to

do and I hope I will find time to do it.

Meanwhile we bring mom home and she is still madder than mad. I think she

needs a rest and hopefully she will begin to come around. She seemed to

respond to and perhaps if I leave her for awhile she will calm down.

So here I am wanted to tell you all that I survived the day. I am taking

care of myself and am going to get something to eat and then take a rest.

I can't begin to thank you all for listening, reading and responding to my

woes. I love you all for being there for me.

Kath

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  • 2 months later...
Guest guest

Hi Kath-

Remember with all your might...these things happen in their

own time for a reason. I know the frustration you are feeling

yet also know there is a bigger picture that will best suit your

mom when the time is right.

Thinking of you-

Hugs-

Sandie and

-- Re: Re: Please no more pain

Still no move. This morning I went to Versa Care to wait to see if the

outbreak was over. I had not heard from the True son manager either.

After 9 am they were still " looking into it " . Then Greg phoned from True

and said that she couldn't move today because they already had too many

coming that day. He said they could accomodate her on Wed. morning. Then I

heard from Versa Care telling me that there was another resident with

symptoms " but it may be an isolated case. I now have to wait until tomorrow

morning when they (public health) will then decide whether to lift the

quarantine or not. They did not want to book another ambulance " just in

case " because they have already had to cancel two. My only choice is to

wait and see if it's a go tomorrow morning and then pay for an ambulance

privately.

At this point I just want to get her out of there. I am hoping (and at the

same time trying not to hope too hard) that tomorrow will be a go. If it

isn't then it will be another 8 days before the all clear will be given.

Kath

Donna wrote:

Kath,

You are doing a great job. Just keep hanging on! My thoughts and

prayers are with you.

Donna P.

>

>

> Hi Kath, sorry to be posting to you so long after yours but I have

> only just now signed on and I had to respond to you.

>

> We all understand the pain you are going through, each and

everyone

> of us. It is perfectly normal given the circumstances. We turn

> ourselves inside out trying to make sure we are doing the best

> possible job on behalf of our loved ones, and it never seems

enough.

> I am sure there is not one person on the board here who hasn't

second

> guessed themselves more than once.

>

> Whether you care for your loved one at home, or that loved one is

in

> a care facility, we all feel the pressures and strains of making

> decisions on the spot, answering to others, maintaing families and

> lastly looking after ourselves. You have every right to rant and

feel

> helpless at times, you have earned it.

>

> You did the absolute right thing in coming here to unburden your

> feelings; we can and will offer the support you need. Just

remember

> that you ARE doing a GREAT job for your mum and that you are not

> alone. You always have us, for the invisible hugs, the silent

prayers

> for strength and the written support in lieu of face time.

>

> I truly hope that everything worked out for your mums move to the

> son (?) place. Our mum was in an Extendicare in Brampton and

we

> were so happy to get her out of there. Now she is happily settled

in

> Woodhall (also in Brampton) and our worries are fewer.

>

> I wish you peace and hope, and that you never feel that you can't

> share your feelings, good and bad, with us here.

>

> Take care,

> .

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

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Guest guest

Hi Kath-

There is a definite bounce in you now. I can see that you are finding the

good in your days and that you are accepting what comes your way. Way to

go!!!

I am so pleased that is coming home. I assume he will

visit Grandma. I am hopeful that this trip Grandma will be more

herself and will have those memories to take with him.

With what you explained of , I am sure he will make the

best of his visit, however he finds Grandma, and that he will

still cherish the time he had with her.

Sunday sounds like a huge bash at your house. Definitely a

time for celebration and family. Also, knowing you are going

to the trailer for 'you time' is WONDERFUL. Once again, I

am proud of you for taking some much deserved time out for

you! Happy, happy Easter to you and your family! :-)

Thank you for the Easter wishes for and I. So far, we

have no plans, which really might turn out for the best.

Do take care Kath and always remember we are here in Iowa

holding you close in our hearts and saying many prayers for

you and your family.

Many hugs-

Sandie and

-- Re: Re: Please no more pain

Still no move. This morning I went to Versa Care to wait to see if the

outbreak was over. I had not heard from the True son manager either.

After 9 am they were still " looking into it " . Then Greg phoned from True

and said that she couldn't move today because they already had too many

coming that day. He said they could accomodate her on Wed. morning. Then I

heard from Versa Care telling me that there was another resident with

symptoms " but it may be an isolated case. I now have to wait until tomorrow

morning when they (public health) will then decide whether to lift the

quarantine or not. They did not want to book another ambulance " just in

case " because they have already had to cancel two. My only choice is to

wait and see if it's a go tomorrow morning and then pay for an ambulance

privately.

At this point I just want to get her out of there. I am hoping (and at the

same time trying not to hope too hard) that tomorrow will be a go. If it

isn't then it will be another 8 days before the all clear will be given.

Kath

Donna wrote:

Kath,

You are doing a great job. Just keep hanging on! My thoughts and

prayers are with you.

Donna P.

>

>

> Hi Kath, sorry to be posting to you so long after yours but I have

> only just now signed on and I had to respond to you.

>

> We all understand the pain you are going through, each and

everyone

> of us. It is perfectly normal given the circumstances. We turn

> ourselves inside out trying to make sure we are doing the best

> possible job on behalf of our loved ones, and it never seems

enough.

> I am sure there is not one person on the board here who hasn't

second

> guessed themselves more than once.

>

> Whether you care for your loved one at home, or that loved one is

in

> a care facility, we all feel the pressures and strains of making

> decisions on the spot, answering to others, maintaing families and

> lastly looking after ourselves. You have every right to rant and

feel

> helpless at times, you have earned it.

>

> You did the absolute right thing in coming here to unburden your

> feelings; we can and will offer the support you need. Just

remember

> that you ARE doing a GREAT job for your mum and that you are not

> alone. You always have us, for the invisible hugs, the silent

prayers

> for strength and the written support in lieu of face time.

>

> I truly hope that everything worked out for your mums move to the

> son (?) place. Our mum was in an Extendicare in Brampton and

we

> were so happy to get her out of there. Now she is happily settled

in

> Woodhall (also in Brampton) and our worries are fewer.

>

> I wish you peace and hope, and that you never feel that you can't

> share your feelings, good and bad, with us here.

>

> Take care,

> .

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

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