Re: Family Vacations

[Guest guest]

, welcome to the board. I'm glad you found us.

<snip> He is difficult to take to a restaurant as he expects the food

to be put in front of him immediately, we have to make sure he does

not eat the menu. <snip>

If you go into our Files section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

Go into the folder marked:

Companion Cards

Use these cards to pass out to restaurants, stores, etc. when you &

your LO is out & about...

(and print out these handy card for future visits to restaurants -

maybe write on there that he needs something in front of him ASAP

before taking drink orders - basket of rolls immediately...)

<snip> my Sisters want to take him with us on our annual end of

summer week at the cottage. <snip>

As much as I would love to say " go for it " my gut instinct is saying

that it's not a good idea. The cottage is too far away in case of an

emergency. Those with dementia need routine and a vacation is not

part of his routine - I gather he'll become agitated & possibly

aggressive the moment you arrive to your destination - and then

you're stuck. He would be most happier in his routine at the NH and

you as family members deserve a break too!

If you're family decides against this - than I suggest you print &

read the following:

From this link:

http://www.uiowa.edu/~centrage/pubs.shtml

Find and click this link:

Travel Guidelines - for caregivers of patients with dementia who plan

trips or travel south for the winter (information for the lay person).

PS - Page 2 of the above document will allow you to determine if your

dad can travel at all...

I'm sure Janet will respond to this post as she has much experience

w/ traveling w/ her husband. Yet to my knowledge she doesn't travel

someplace that is 3 hours from the nearest medical facility. Her

husband gets agitated in the car in about 1/2 hours time and has

actually tried to open the car door during the trip... I would

suggest not to take your dad.

[Guest guest]

Oops... it's 1 hour from a medical facility... sorry - I still think

it's too far away...

[Guest guest]

,

Just my opinion but I would not take him. I would go an enjoy my vacation. You

do a lot to for you dad and now is the time for you to do something for

yourself. Vacations are for relaxation and it sounds like it would be very

stressful on the whole family if he were there.

Vallerie

[Guest guest]

If they agree to take him back the minute he gets aggressive, and understand if

it is too much for your Mother, you will take her home, and all those things,

then they might rethink their desision.

If you own the cabin, have them take him up early for a test run. If you have

to meet them half way to return him to the nursing home, at least they will see

how difficult it really is without ruining everyone's vacation week.

I suspect they'll be lots of regrets that they tried to put him through the

ordeal of transportation, and all the rest.

Sounds like they are not close enough to the problem to understand the reason

he is in a nursing home.

If you were in favor of it, I'd say go for it, but your reluctance indicates

you understand the problem, and that your mom also deserves this vacation.

Who are your sisters doing this for, your dad, or themselves to erase any

guilt they have in their minds?

If he is slipping fast, he will not enjoy the cabin anyway. He is fighting

too hard all the time to retain any marbles he has left. You guys don't go see

him all at once, do you? The overstimulation is cruel and unusual punishment.

Spend the time working on the eventual memorial service, funeral plans, and

care of your mother. Make her " Queen for the Week " to celebrate all the work

she has put into your father's care.

If you take Dad, you will not be able to give Mom the break she deserves.

If they insist, take him for one night.

If children are going to be there, they will resent grandpa, and have a rotten

last memory.

When all else fails, get the doctor to say " no " !

Carol

wrote:

Need some help/advice

My father has been in a nursing home for 6 months now, he is slipping

fast and has started not recognizing the younger of my siblings and all

the grandchildren. He is difficult to take to a restaurant as he

expects the food to be put in front of him immediately, we have to make

sure he does not eat the menu. He has started to have more and more

violent outbreaks around supper time. On good days he thinks he is at

the cottage on bad days we don't know what he is thinking.

Now the problem, my Sisters want to take him with us on our annual end

of summer week at the cottage. The place is semi remote, surrounded on

three sides by water and quite rocky. It is about an hour from the

closest medical facility and 3 hours from the nursing home. He wears

adult diapers during the night as well as some days depending on his

mood, he will not let us change him.

My Mother is very nervous around him. He is quite aggressive towards

her. We can not let her see him without one of us around. (He has, I

beleive reverted to a period in their lives when they were more sexual).

He is always accusing her of having sex with other men, I think this is

one of his constant hallucinations.

Sorry if this is running on and on but I want to let you know were I am

coming from......

I have very mixed feelings about bringing him.

Part of me would love to have him there, part of me is selfish thinking

we all need a vacation without him, part of me thinks it is cruel to

take him out of the home and put him back in the home when the vacation

is over and the serious side of me thinks its irresposible to risk his

health and safety.

Any advice, experiences or thoughts would be appreciated,

Thanks

Welcome to LBDcaregivers.

[Guest guest]

Hi ,

Difficult decision. My experience with taking my mother to visit family, is she

really enjoyed herself, yes, when she returned she was very tired(6 hours one

way) but she is glad she made the trip. This is the only time to see this part

of the family.So my questions would be the next time I ask her to a family

reunion. Does she want to go? Would she enjoy it?

I guess what I am getting at is, what is best for your father, yes, a change is

difficult, but being with your loved ones sometimes out weights it. I know alot

is probably put on you, but can you deal with it for this one trip? Just some

things to think about.....

My motto with this disease is, live for the moment, because you never know what

is around the corner.

Many hugs,

Deb

wrote: Need some

help/advice

My father has been in a nursing home for 6 months now, he is slipping

fast and has started not recognizing the younger of my siblings and all

the grandchildren. He is difficult to take to a restaurant as he

expects the food to be put in front of him immediately, we have to make

sure he does not eat the menu. He has started to have more and more

violent outbreaks around supper time. On good days he thinks he is at

the cottage on bad days we don't know what he is thinking.

Now the problem, my Sisters want to take him with us on our annual end

of summer week at the cottage. The place is semi remote, surrounded on

three sides by water and quite rocky. It is about an hour from the

closest medical facility and 3 hours from the nursing home. He wears

adult diapers during the night as well as some days depending on his

mood, he will not let us change him.

My Mother is very nervous around him. He is quite aggressive towards

her. We can not let her see him without one of us around. (He has, I

beleive reverted to a period in their lives when they were more sexual).

He is always accusing her of having sex with other men, I think this is

one of his constant hallucinations.

Sorry if this is running on and on but I want to let you know were I am

coming from......

I have very mixed feelings about bringing him.

Part of me would love to have him there, part of me is selfish thinking

we all need a vacation without him, part of me thinks it is cruel to

take him out of the home and put him back in the home when the vacation

is over and the serious side of me thinks its irresposible to risk his

health and safety.

Any advice, experiences or thoughts would be appreciated,

Thanks

---------------------------------

Luggage? GPS? Comic books?

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[Guest guest]

,

Sorry - late to jump into the discussion - just getting home after being out

of town for the weekend.

Here's my take - and please keep in mind that my Mom had a VERY rapid

progression of disease. She went from working full time in March to not

being able to dress herself in April. By June she had developed a blank

stare. By August she couldn't remember her name or mine most days. By

September she began wandering - and I actually lost her at the grocery store

the last time I took her to one - and had to call 911 to get her found and

back. (Terrifying, to say the least!) By the time October rolled around

and we had a diagnosis of advanced onset of an especially aggressive form of

LBD, the neurologist and other physicians were urging me to get her 24/7

care - that it would be impossible to keep her safe at home for much longer.

It became brutally obvious to me when she started getting fascinated with

the stove (she liked to turn it on - and just couldn't believe that it would

get hot - and would want to touch it to make sure!), or she would grab one

of my knives out of my hand while I was preparing a meal (and I have a

culinary degree and am very picky about knives - they have to be GOOD and

very sharp to do their job well!), or she would wander out of the house

during the night and go try to get " help " - even though she didn't quite

know what it was she needed help for, and she had no fear of traffic - she

would walk into a road full of pretty high-speed traffic without half a

hesitation. Now - 10 months after having placed her in an assisted living

memory care facility, I know without a shadow of a doubt that it is simply

impossible for me to provide the care she gets at the RCF. I also know that

we're to the point now that it's simply not safe to take her out any longer

- she will attempt to - and has even succeeded at - getting out of the car

while it was in motion! She gets panicked when we go down a street she

drove down for 40 years and says over and over again, " This isn't right.

It's not supposed to look this way! " Or, we might have arrived at a

destination (in previous months) and we'd go in and she'd say, " This isn't

the right place. I want to go to the real place. " In her mind, where we

were going may well be the place we ended up - but in her mind it doesn't

seem to be the REAL one - the one she wanted to go to. I've often wondered

if she isn't thinking of a different time frame, you know? Regardless, it's

very upsetting to her, and leads to increased agitation, etc.

So - obviously - I've got red flags going up all over the place on your

thought of possibly taking your Dad on the family vacation.

My first thoughts are:

1. Will he be able to understand that he should not touch anything in

the kitchen? Knives, stoves, ovens, toaster ovens, toasters, etc.?

2. Will it be possible to care for him in terms of hygiene in that

setting? Will there be someone there that will be comfortable helping him

with toileting, changing, bathing, etc?

3. Will it be possible to give him some space for isolation and

non-stimulation if he becomes agitated and aggressive?

4. Is there danger of him wandering at all? If you're that close to

water will someone in your party be a lifeguard? Will you be able to get

cell service for a 911 call? What about if he wandered and fell?

5. Are there locks on doors to bedrooms at the cottage? Will people be

safe at night if he has a moment of sexual aggression or simply wanders from

room to room during the night?

Of course, this is just the tip of the iceberg. My kids don't call me

paranoid mom for nothing! LOL! :-) If there are young children going -

will they be negatively emotionally impacted? Will your Mom get the rest

and restoration she deserves/needs? Will the rest of you be able to debrief

and share and express your grief, hurt, anger, love, hopes, etc. with one

another if he is in your midst?

Obviously - you guys have to make your own decision on this one. If it were

me - ain't no way I'd do it. I can see too many areas of potential harm to

all involved.

Many blessings,

Dina

Care Manager to Mom, aged 67

dx'd with LBD 10/2006

[Guest guest]

I would agree with most of the replies you have

gotten, , for all the reasons they are saying.

Our one attempt to take my husband out for just an

afternoon, although not disasterous, was very

difficult, and I believe the grandchildren were upset

that the grandpa they saw then wasn't the one they

were used to in our house. They were used to a lot of

interaction, teasing, etc., with him, and he wasn't

able to do that. He had a hard time eating, and the

bathroom situation wasn't too good, because he wasn't

incontinent yet, but had to get there fast and have

complete help. I know my kids probably wouldn't have

wanted to do that, especially the girls, if it would

have been a lengthy stay where they would have helped.

Taking them out upsets their routine, and most of them

are in a fairly tight routine, even though they

probably aren't aware of it, they do get upset when

it's changed. Your mother probably needs a respite,

and you as well, so unless the others are willing to

step up and do all the care, I'd sure think twice,

too.

June

--- Dina wrote:

> ,

>

>

>

> Sorry - late to jump into the discussion - just

> getting home after being out

> of town for the weekend.

>

>

>

> Here's my take - and please keep in mind that my Mom

> had a VERY rapid

> progression of disease. She went from working full

> time in March to not

> being able to dress herself in April. By June she

> had developed a blank

> stare. By August she couldn't remember her name or

> mine most days. By

> September she began wandering - and I actually lost

> her at the grocery store

> the last time I took her to one - and had to call

> 911 to get her found and

> back. (Terrifying, to say the least!) By the time

> October rolled around

> and we had a diagnosis of advanced onset of an

> especially aggressive form of

> LBD, the neurologist and other physicians were

> urging me to get her 24/7

> care - that it would be impossible to keep her safe

> at home for much longer.

> It became brutally obvious to me when she started

> getting fascinated with

> the stove (she liked to turn it on - and just

> couldn't believe that it would

> get hot - and would want to touch it to make sure!),

> or she would grab one

> of my knives out of my hand while I was preparing a

> meal (and I have a

> culinary degree and am very picky about knives -

> they have to be GOOD and

> very sharp to do their job well!), or she would

> wander out of the house

> during the night and go try to get " help " - even

> though she didn't quite

> know what it was she needed help for, and she had no

> fear of traffic - she

> would walk into a road full of pretty high-speed

> traffic without half a

> hesitation. Now - 10 months after having placed her

> in an assisted living

> memory care facility, I know without a shadow of a

> doubt that it is simply

> impossible for me to provide the care she gets at

> the RCF. I also know that

> we're to the point now that it's simply not safe to

> take her out any longer

> - she will attempt to - and has even succeeded at -

> getting out of the car

> while it was in motion! She gets panicked when we

> go down a street she

> drove down for 40 years and says over and over

> again, " This isn't right.

> It's not supposed to look this way! " Or, we might

> have arrived at a

> destination (in previous months) and we'd go in and

> she'd say, " This isn't

> the right place. I want to go to the real place. "

> In her mind, where we

> were going may well be the place we ended up - but

> in her mind it doesn't

> seem to be the REAL one - the one she wanted to go

> to. I've often wondered

> if she isn't thinking of a different time frame, you

> know? Regardless, it's

> very upsetting to her, and leads to increased

> agitation, etc.

>

>

>

> So - obviously - I've got red flags going up all

> over the place on your

> thought of possibly taking your Dad on the family

> vacation.

>

>

>

> My first thoughts are:

>

>

>

> 1. Will he be able to understand that he should not

> touch anything in

> the kitchen? Knives, stoves, ovens, toaster ovens,

> toasters, etc.?

> 2. Will it be possible to care for him in terms of

> hygiene in that

> setting? Will there be someone there that will be

> comfortable helping him

> with toileting, changing, bathing, etc?

> 3. Will it be possible to give him some space for

> isolation and

> non-stimulation if he becomes agitated and

> aggressive?

> 4. Is there danger of him wandering at all? If

> you're that close to

> water will someone in your party be a lifeguard?

> Will you be able to get

> cell service for a 911 call? What about if he

> wandered and fell?

> 5. Are there locks on doors to bedrooms at the

> cottage? Will people be

> safe at night if he has a moment of sexual

> aggression or simply wanders from

> room to room during the night?

>

>

>

> Of course, this is just the tip of the iceberg. My

> kids don't call me

> paranoid mom for nothing! LOL! :-) If there are

> young children going -

> will they be negatively emotionally impacted? Will

> your Mom get the rest

> and restoration she deserves/needs? Will the rest

> of you be able to debrief

> and share and express your grief, hurt, anger, love,

> hopes, etc. with one

> another if he is in your midst?

>

>

>

> Obviously - you guys have to make your own decision

> on this one. If it were

> me - ain't no way I'd do it. I can see too many

> areas of potential harm to

> all involved.

>

>

>

> Many blessings,

>

>

>

> Dina

>

> Care Manager to Mom, aged 67

> dx'd with LBD 10/2006

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Park yourself in front of a world of choices in alternative vehicles. Visit the

Yahoo! Auto Green Center.

http://autos.yahoo.com/green_center/

[Guest guest]

June,

Thank you for sharing your timeline. It certainly points out how different

this Lewy thing goes.

You thought of even more great things than I would have ever imagined.

If lets his Dad go to the cabin, he ought to rent a straight jacket for

the trip. Someone is bound to need it by the second day.

Even if Dad is a perfect guest, someone will be bonkers before the first night

is over, assuming they get there.

The cell service was genius. I would not have thought of that!

The timeline was staggering. I am going to nail ours down for a future post.

New people would appreciate the information from as many who can share, I am

sure.

When you first get the diagnosis, you are hungry for answers and timelines,

for sure!

Carol

June Christensen wrote:

I would agree with most of the replies you have

gotten, , for all the reasons they are saying.

Our one attempt to take my husband out for just an

afternoon, although not disasterous, was very

difficult, and I believe the grandchildren were upset

that the grandpa they saw then wasn't the one they

were used to in our house. They were used to a lot of

interaction, teasing, etc., with him, and he wasn't

able to do that. He had a hard time eating, and the

bathroom situation wasn't too good, because he wasn't

incontinent yet, but had to get there fast and have

complete help. I know my kids probably wouldn't have

wanted to do that, especially the girls, if it would

have been a lengthy stay where they would have helped.

Taking them out upsets their routine, and most of them

are in a fairly tight routine, even though they

probably aren't aware of it, they do get upset when

it's changed. Your mother probably needs a respite,

and you as well, so unless the others are willing to

step up and do all the care, I'd sure think twice,

too.

June

--- Dina wrote:

> ,

>

>

>

> Sorry - late to jump into the discussion - just

> getting home after being out

> of town for the weekend.

>

>

>

> Here's my take - and please keep in mind that my Mom

> had a VERY rapid

> progression of disease. She went from working full

> time in March to not

> being able to dress herself in April. By June she

> had developed a blank

> stare. By August she couldn't remember her name or

> mine most days. By

> September she began wandering - and I actually lost

> her at the grocery store

> the last time I took her to one - and had to call

> 911 to get her found and

> back. (Terrifying, to say the least!) By the time

> October rolled around

> and we had a diagnosis of advanced onset of an

> especially aggressive form of

> LBD, the neurologist and other physicians were

> urging me to get her 24/7

> care - that it would be impossible to keep her safe

> at home for much longer.

> It became brutally obvious to me when she started

> getting fascinated with

> the stove (she liked to turn it on - and just

> couldn't believe that it would

> get hot - and would want to touch it to make sure!),

> or she would grab one

> of my knives out of my hand while I was preparing a

> meal (and I have a

> culinary degree and am very picky about knives -

> they have to be GOOD and

> very sharp to do their job well!), or she would

> wander out of the house

> during the night and go try to get " help " - even

> though she didn't quite

> know what it was she needed help for, and she had no

> fear of traffic - she

> would walk into a road full of pretty high-speed

> traffic without half a

> hesitation. Now - 10 months after having placed her

> in an assisted living

> memory care facility, I know without a shadow of a

> doubt that it is simply

> impossible for me to provide the care she gets at

> the RCF. I also know that

> we're to the point now that it's simply not safe to

> take her out any longer

> - she will attempt to - and has even succeeded at -

> getting out of the car

> while it was in motion! She gets panicked when we

> go down a street she

> drove down for 40 years and says over and over

> again, " This isn't right.

> It's not supposed to look this way! " Or, we might

> have arrived at a

> destination (in previous months) and we'd go in and

> she'd say, " This isn't

> the right place. I want to go to the real place. "

> In her mind, where we

> were going may well be the place we ended up - but

> in her mind it doesn't

> seem to be the REAL one - the one she wanted to go

> to. I've often wondered

> if she isn't thinking of a different time frame, you

> know? Regardless, it's

> very upsetting to her, and leads to increased

> agitation, etc.

>

>

>

> So - obviously - I've got red flags going up all

> over the place on your

> thought of possibly taking your Dad on the family

> vacation.

>

>

>

> My first thoughts are:

>

>

>

> 1. Will he be able to understand that he should not

> touch anything in

> the kitchen? Knives, stoves, ovens, toaster ovens,

> toasters, etc.?

> 2. Will it be possible to care for him in terms of

> hygiene in that

> setting? Will there be someone there that will be

> comfortable helping him

> with toileting, changing, bathing, etc?

> 3. Will it be possible to give him some space for

> isolation and

> non-stimulation if he becomes agitated and

> aggressive?

> 4. Is there danger of him wandering at all? If

> you're that close to

> water will someone in your party be a lifeguard?

> Will you be able to get

> cell service for a 911 call? What about if he

> wandered and fell?

> 5. Are there locks on doors to bedrooms at the

> cottage? Will people be

> safe at night if he has a moment of sexual

> aggression or simply wanders from

> room to room during the night?

>

>

>

> Of course, this is just the tip of the iceberg. My

> kids don't call me

> paranoid mom for nothing! LOL! :-) If there are

> young children going -

> will they be negatively emotionally impacted? Will

> your Mom get the rest

> and restoration she deserves/needs? Will the rest

> of you be able to debrief

> and share and express your grief, hurt, anger, love,

> hopes, etc. with one

> another if he is in your midst?

>

>

>

> Obviously - you guys have to make your own decision

> on this one. If it were

> me - ain't no way I'd do it. I can see too many

> areas of potential harm to

> all involved.

>

>

>

> Many blessings,

>

>

>

> Dina

>

> Care Manager to Mom, aged 67

> dx'd with LBD 10/2006

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Park yourself in front of a world of choices in alternative vehicles. Visit the

Yahoo! Auto Green Center.

http://autos.yahoo.com/green_center/

Welcome to LBDcaregivers.