Re: My Dad's home visit

May 18, 2004

Oh Abby! How my heart hurt when I read the account of your dad's visit. I

was astounded because I could have written that account about my dad! It was

eerily similar.

LBD has left me with the legacy of haunting, wretched memories of the most

unimaginable misery - so many of them echoed in your post! Desperate days

flood back into my mind ... when I entered the hospital ward to find my dad

wandering aimlessly in muddle and anxious trembling, trying to find his

bedroom and belongings. Some days I saw him before he caught sight of me and

I would have to compose myself because my heart was breaking and the tears

would well up ... As soon as he saw me his face would light up and he'd say

he was ready to 'come home' - then we'd spend the afternoon trying to

explain why that wouldn't be happening that day. It's sheer agony.

On the days I was allowed to take him home he too was 'giddy' with utter

joy. He'd be chatting non stop and pacing up and down.

For several hours we'd almost have the 'old Colin' back and it was truly

amazing. We'd laugh, joke, eat, walk, watch TV, have friends visit ... then

just like Cinderella at midnight, the gremlins returned.

As evening approached he'd start hallucinating, talking mumble rubbish,

wander about, get agitated and cross and very depressed. You'd watch as he

plummeted into LBD hell again.

It is indescribable. It's the bastard LBD in tight grip and you are

helpless.

Oh Abby .. how I hurt for you!

I know exactly how you feel. The pain is suffocating and the agony just

kills you inside!

I'm so sorry you have this dreadful sadness. I wish I could do something to

help!

I'm sending you tons of hugs and support -

You're doing a fantastic job!

Sally xx

May 18, 2004

Abby

Thanks for sharing your experiences with your dad. It was wonderful that

you were able to have such a good time and remember how it used to be. It

is also amazing that your dad could realize how he might be causing your mom

so much trouble and how he might be better off in the NH instead. My mother

would have insisted that she didn't need anyone and that she was going to

stay at home despite all the trouble. She never admits that she can not

cope at home by herself, and rarely does she admit that she cannot do it

without my help.

I have noticed that any change causes mom to experience a " rough night "

whether a good or bad experience. She recently went to Niagara Falls with

her adult day program and although she was so looking forward to the trip

she fretted over it for at least a week and lost a great deal of sleep. The

night before she couldn't relax. But it was in the days that followed that

the hallucinating increased and the paranoia increased and the phone calls

to me increased. My first reaction was that maybe she shouldn't go on any

more trips as this has caused such an upheaval, but then after I had had a

chance to think about it, I realized that the pleasure she got was worth it

in the end. She had a great day, and a great memory and she had something

to look forward to. Yes, there was much work in it to have it happen but I

would do it again in a moment so that she could have these times again.

Just think about the fact that you were able to play cards, have him watch

and cheer on your children at swimming and enjoy time together. Now, if you

knew if it was going to result in the restless night, would you go back and

not experience any of those things and just keep him at the NH? Of course

not, because it is worth it in the end to have those times together. Your

dad had to realize that things are NOT going to be the same anymore and this

has got to have had an affect on him, in a depressing way. Maybe emphasize

the positive and let him know that a busy day can result in the restlessness

and that it is not just him that goes through that. Let him know that it

was worth it to have the great day together and that you (and your mom)

would do what they could to have those times, but if it gets too much then

they would have to get help or make alternate arrangements. He probably

needs to know that it was worth the trouble for you as he is feeling so much

of a burden right now.

I think your suggestion of bringing him home during the day is a good one.

I think he probably tried to do too much in one fell swoop and it was a bit

overwhelming for him. Don't beat yourself up over it. This is a

fluctuating disease as we all know. Just roll with it and be glad that

there are the " good moments " and when they pendulum swings back you know you

have us all here waiting to pick you up and help you carry on until the good

times return again.

Take care Abby,

Kath

My Dad's home visit

> Hello:

>

> As many of you know, my dad came home this weekend. I picked him up

> on Saturday morning at 9 am (the nurse tells me he had breakfast in

> record time...8 minutes). When I got there he was wandering the

> hallway trying to discern which was his room. He saw me and my my

> son Adam and smiled the largest smile we'd seen in a long time. (You

> should know he hadn't seen Adam or my 4 year old in about a

> week and a half - since the quarantine began) While we were waiting

> for the nurse to give us medications for the night, my dad was almost

> giddy he was so excited.

>

> He began speculating about how him going home was a great idea

> because, as he saw it, his current physical condition meant he'd be

> great at home. I told him that we would take it one day at a time

> and he began waxing poetic about how improved he was and how he

> wouldn't even need an aide to help him at night. Except for him not

> even needing an aide, I even believed him a little bit. There before

> me sat the closest version of my father as I knew him before LBD. He

> was neatly dressed and passionate about what he was trying to

> convince me of. I haven't seen that much emotion in him in a very

> long time.

>

> Of course, when I drove him to his house things got better. His

> friends met him as he got out of my truck and made a proper fuss over

> him. He was buoyant. We all were! They came to his garden and

> stood by while he examined my mom's tomato seedlings. It was

> wonderful for my father to be there and the mood was glorious.

>

> Later we took my kids to their swimming class. I recall telling you

> that my dad was a very involved grandparent in the past. He attended

> all of their soccer and T-Ball games before he became ill. He had

> wanted to see their progress in swimming. Although he was a bit

> tired following all the excitement at his home, he was in good

> spirits and cheered my boys on as they jumped into the pool in the

> deep end just for Nonno.

>

> We came home to my house after that and had dinner. My dad was tired

> so we had him lay down for about an hour but he was awake the whole

> time. I think he just didn't want to miss a moment of it. After

> dinner we played cards and he won!! Honest and truly, he and my

> husband beat the pants off my sister and I! He left my place and

> headed for my parent's place at about 9 pm. I could tell he was

> tired and, when asked if he wanted to go home or go back to the nh he

> responded that he just wanted to sleep in his bed. My sister had

> agreed to stay the night with my mom and dad.

>

> When he got home, that's when things fell apart. He became restless

> and couldn't sit still. Like so many other LBD patients, it's worse

> at night for my dad. My mom kept asking him if he wanted to sleep

> but he kept saying, " Let's just stay up a bit longer.. " and he'd pace

> or get up and sit down. They finally got to bed at about 11 pm and

> that's when it became really bad for my dad. He couldn't get

> comfortable (thank you Parkinson's) and my mom had to physically help

> him shift or change positions. What's more he was constantly up and

> down having to go to the washroom (actually he does that a lot. I'm

> getting the nh to check in case he has a UTI). My mom tried to

> arrange the comfy armchair for him to sleep on but it was no go. She

> moved a mattress to the floor - still my dad said he couldn't get

> comfortable. My mom says he was willing to try everything but

> nothing worked. The entire time he constantly apologized for being

> such a bother and my mom thought he was even going to cry a few times.

>

> Yesterday when I arrived at my parent's place I met my dad in his

> garden. He was horribly slouched over and just looked dejected

> and ... well, deflated is really the best word to describe him. When

> I went up to him our conversation went like this:

>

> " Hi Dad. How are you doing? "

>

> " OK but I gave your mom a horrible night. "

>

> " Don't worry Dad. Did you get any sleep? "

>

> " Very little. I never thought I'd be saying this but I can't live

> here any more. I see now that this isn't the place for me anymore. "

>

> " Well.., " I said bawling " OK..what about if we pick you up in the

> morning and then bring you back at night? "

>

> " We'll see. I'll have to see... " (he said this in a very uncertain

> tone)

>

> When I brought him back to the home, I almost heard him heave an

> audible sigh. It was then that I knew that the nh is my dad's world

> now. It's what he knows and where he feels safe. It's so sad to

> think that but his old world is a place wherein he no longer seems

> to " fit " or at least it's a place that doesn't provide him with

> security or the feeling of capability. My dad needed to see that and

> we need to accept that. My dad may forget in the future but I need

> to remind myself that I'm fooling myself if I think I can go back -

> even if it's only for a little while.

>

> I began this post and knew it would be long. I began it as an answer

> to Sandie but I ended up addressing it to all the group.

>

> Have any of you seen this? A colleague at work told me this sounds a

> lot like an Alice Munro short story.

>

> Over and over this bastard disease demands that we lose our loved

> ones. This slow grieving and stripping away from us is devastating

> beyond belief.

>

> Thanks. I'm not crying over this today but I cried tonnes yesterday.

> It's just another loss and a day in the life of LBD...

>

> Abby

>

> Welcome to LBDcaregivers.

>

May 18, 2004

The only way to get through is to focus on the bright moments. How

excited he was to be going home, his giant smile at seeing his

grandchildren, how his friends fussed over him and made him feel so

good, how he absolutely clobbered you at cards. You had him back for

a while, and that's wonderful.

KD

> Hello:

>

> As many of you know, my dad came home this weekend. I picked him

up

> on Saturday morning at 9 am (the nurse tells me he had breakfast in

> record time...8 minutes). When I got there he was wandering the

> hallway trying to discern which was his room. He saw me and my my

> son Adam and smiled the largest smile we'd seen in a long time.

(You

> should know he hadn't seen Adam or my 4 year old in about a

> week and a half - since the quarantine began) While we were

waiting

> for the nurse to give us medications for the night, my dad was

almost

> giddy he was so excited.

>

> He began speculating about how him going home was a great idea

> because, as he saw it, his current physical condition meant he'd be

> great at home. I told him that we would take it one day at a time

> and he began waxing poetic about how improved he was and how he

> wouldn't even need an aide to help him at night. Except for him

not

> even needing an aide, I even believed him a little bit. There

before

> me sat the closest version of my father as I knew him before LBD.

He

> was neatly dressed and passionate about what he was trying to

> convince me of. I haven't seen that much emotion in him in a very

> long time.

>

> Of course, when I drove him to his house things got better. His

> friends met him as he got out of my truck and made a proper fuss

over

> him. He was buoyant. We all were! They came to his garden and

> stood by while he examined my mom's tomato seedlings. It was

> wonderful for my father to be there and the mood was glorious.

>

> Later we took my kids to their swimming class. I recall telling

you

> that my dad was a very involved grandparent in the past. He

attended

> all of their soccer and T-Ball games before he became ill. He had

> wanted to see their progress in swimming. Although he was a bit

> tired following all the excitement at his home, he was in good

> spirits and cheered my boys on as they jumped into the pool in the

> deep end just for Nonno.

>

> We came home to my house after that and had dinner. My dad was

tired

> so we had him lay down for about an hour but he was awake the whole

> time. I think he just didn't want to miss a moment of it. After

> dinner we played cards and he won!! Honest and truly, he and my

> husband beat the pants off my sister and I! He left my place and

> headed for my parent's place at about 9 pm. I could tell he was

> tired and, when asked if he wanted to go home or go back to the nh

he

> responded that he just wanted to sleep in his bed. My sister had

> agreed to stay the night with my mom and dad.

>

> When he got home, that's when things fell apart. He became

restless

> and couldn't sit still. Like so many other LBD patients, it's

worse

> at night for my dad. My mom kept asking him if he wanted to sleep

> but he kept saying, " Let's just stay up a bit longer.. " and he'd

pace

> or get up and sit down. They finally got to bed at about 11 pm and

> that's when it became really bad for my dad. He couldn't get

> comfortable (thank you Parkinson's) and my mom had to physically

help

> him shift or change positions. What's more he was constantly up

and

> down having to go to the washroom (actually he does that a lot.

I'm

> getting the nh to check in case he has a UTI). My mom tried to

> arrange the comfy armchair for him to sleep on but it was no go.

She

> moved a mattress to the floor - still my dad said he couldn't get

> comfortable. My mom says he was willing to try everything but

> nothing worked. The entire time he constantly apologized for being

> such a bother and my mom thought he was even going to cry a few

times.

>

> Yesterday when I arrived at my parent's place I met my dad in his

> garden. He was horribly slouched over and just looked dejected

> and ... well, deflated is really the best word to describe him.

When

> I went up to him our conversation went like this:

>

> " Hi Dad. How are you doing? "

>

> " OK but I gave your mom a horrible night. "

>

> " Don't worry Dad. Did you get any sleep? "

>

> " Very little. I never thought I'd be saying this but I can't live

> here any more. I see now that this isn't the place for me anymore. "

>

> " Well.., " I said bawling " OK..what about if we pick you up in the

> morning and then bring you back at night? "

>

> " We'll see. I'll have to see... " (he said this in a very

uncertain

> tone)

>

> When I brought him back to the home, I almost heard him heave an

> audible sigh. It was then that I knew that the nh is my dad's

world

> now. It's what he knows and where he feels safe. It's so sad to

> think that but his old world is a place wherein he no longer seems

> to " fit " or at least it's a place that doesn't provide him with

> security or the feeling of capability. My dad needed to see that

and

> we need to accept that. My dad may forget in the future but I need

> to remind myself that I'm fooling myself if I think I can go back -

> even if it's only for a little while.

>

> I began this post and knew it would be long. I began it as an

answer

> to Sandie but I ended up addressing it to all the group.

>

> Have any of you seen this? A colleague at work told me this sounds

a

> lot like an Alice Munro short story.

>

> Over and over this bastard disease demands that we lose our loved

> ones. This slow grieving and stripping away from us is devastating

> beyond belief.

>

> Thanks. I'm not crying over this today but I cried tonnes

yesterday.

> It's just another loss and a day in the life of LBD...

>

> Abby

May 18, 2004

Abby,

What we have been doing with my Mother is to bring her home Saturday

afternoon. My Dad and I pick her up just after lunch and keep her

through supper and then take her back to go to bed. She has had so

much sleep disturbance at night that we haven't tried an overnight

yet. Most of the time she doesn't want to go back, but she will do it.

I have also been taking her out shopping or for ice cream on Friday

afternoon and Sunday afternoon. I guess what I'm trying to say that it

doesn't have to be all or nothing. You can take your Father out of the

nh for visits or to events; he can still participate in family

gatherings.

Since we started Mother on Exelon, she has improved a lot. Her walking

is better, she is calmer and happier, her memory is better, and her

depth perception is better. Tomorrow we step up her dosage and I hope

she gets even better. I too am contemplating taking my Mother out of

the nh. We will try some weekend visits before making it permanent. I

still worry about the nights and the fact that my Father would be her

caregiver during the day while I'm at work. We will probably have to

have a caregiver to give my Father a break. The nh we have Mother in

has a day program, so we might convince her to go to that a couple of

times a week.

I'm sure you will work out a comprimise. I just hope your Father

continues to be happy at the nh.

in Dallas