Re: My Trip to Colorado

[Guest guest]

Sue, you have had a wrenching experience! My husband has also had spells of

saying he would stay here alone if I moved, but it passed as he thought

things through. He still has valid reasons for not going, though . . .

Thank goodness I had help from the neurologist with the driving issue. It is

a matter of personal and public safety, as well as having incredible legal

ramifications. You and your siblings need to do something about that. Don't

know the position of the State of Colorado, but there are states that require

physicians to report ineptitude to the Drivers License Bureau. Not that that

always matters to those who shouldn't be driving. (BTW, I recall that when

working with severely emotionally disturbed children, keys in and of

themselves constituted a means of " control " over one's situation.)

As for them moving, there are harsh steps to take if you can't finesse it

without all the anger and refusal from your dad. Some patients accept the

inevitable once it has happened, some actually worsen. But your mother's

welfare has primacy here, as she is the one burning out. It is quite

apparent from what you write that they need help, and if those closest can't

convince your dad, the state may be able to take action. Adult Protective

Services has, among their other obligations, to ensure the safety and welfare

of elders unable to care for themselves alone on a full time basis. They are

trained to help in situations just as you have described and would likely be

very glad to see that they don't have to seek a placement - it is already

there. They just have to take steps to ensure the move. It sounds harsh,

but I know of several other children who have had good results in their

states with similar issues.

Lastly, the last stages. It varies to the point that there is no " schedule. "

We just know where we are going, not when or by what route. Some go quickly

to a state of total dementia, others fade gradually and pass on with some

semblance of their minds still in tact. Much depends on the patient's

general health. Also, so far has your dad's progression been rapid or slow?

When my husband was diagnosed nearly 4 yrs ago the literature I obtained

indicated that he would probably be in NeverNeverland by now, but he

continues to do remarkably well. The Parkinsonian features will probably get

him long before his mind is gone.

Good luck with all this, Sue. I am glad for you that you have siblings who

are able to help out and share the load. I think you said a brother (or

two?) is in the Boulder area and you have a sister who also flew in? My best

to you and your family,

Cheryl (in Mobile)

[Guest guest]

In a message dated 1/28/02 11:11:59 AM Central Standard Time,

stephanie_brent@... writes:

> Then I went to court and got custody of mother back after the dust settled.

> It cost a fortune in legal fees because the Public Guardian charges and

> also has a lawyer who charges and then mother was assigned a lawyer who

> charged and then we had to hire a lawyer to file to get her back. Hopefully

> mother's tax accountant will find a way to take all that as a deduction.

YOWEE!! I sure hope you CAN get a tax break! Cheryl

[Guest guest]

Sue,

Your trip sounds so upsetting! What a difficult time for all of you. It sounds

like it may be time to seek a third party to reason with your father. Perhaps

the IL facility your parents are moving to can give you a recommendation.

Moving is especially hard on any older person, and must be particularly so for

LBD patients. Just as everything is becoming strange in their life, people want

to make them leave the house that has become sort of a security blanket -

something at least somewhat familiar. It has to be very frightening. Be sure

to assure him that your mother will still be there, and his things will be

there. I don't know what is the best way to reassure someone that they aren't

being " put away " , to be isolated from everything and everyone they know. When I

was between caregivers and had to travel on business, I placed my husband in an

assisted living facility that offers respite care. Even though I reassured him

I would be picking him up and bringing him back home, he really didn't believe I

would. It was really hard on him. The people who worked at the AL were great

with him, but he deteriorated while I was gone, just feeling lost and abandoned.

Still, I knew he had the care he needed, and I would use the same resource if I

were in the same position. IT is just so hard to know what to say and do!

Sue, please get help in dealing with your father. Your mom can't handle this

alone. There must be resources to help in a situation like theirs. I don't

know if your father can understand, but if your mother doesn't get some help in

dealing with his illness and needs, she may not be able to give him the care he

wants and needs for much longer. Hope some others on this board can give you

better information about where you might find the help you need.

Good luck to you. And God bless you!

[Guest guest]

Sue

My sympathies are with you in this experience! Before we moved Dad into an

assisted-living center, we had a similar problem with driving.

Fortunately, we have one of those laws where the physician is obligated to

reported health hazards to the DMV. The DMV sent Dad a notice and gave him

a chance to pass a driving test--which he failed of course. The advantage

of this sytem is that is gets YOU out of the loop--your Dad will blame the

DMV, he may threaten to raise hell with the Secretary of State, but he will

not be mad at you.

This did not solve the whole problem, though, as Dad did not always

REMEMBER his license had been taken away. We solved this by 'borrowing'

his car and forgetting to give it back for weeks at a time. This really

ticked him off but it kept him off the streets.

Maybe going the DMV route would work for you; anyway it's a good idea to

enlist his doctors. If your mom can't do it try calling the doctor directly.

As far as moving goes, I don't have an easy answer for you. Dad was not

much opposed to his move, as he didn't really want to live in the house

where Mom had passed away anyway. That doesn't help you much though.

Maybe your Mom could make the case based on how she couldn't get along

without him all by herself in a new apartment.

I don't remember what you had to say about legal status: has your Dad

signed a power of attorney? If he hasn't, see if you can arrange it soon.

Otherwise if he truly refuses to leave the house your only real legal

option is to have someone declared his guardian, a long and hostile

procedure so I hear.

Best of luck, it is hard to have daily care of an LBD person but

long-distance has its own set of frustrations!

Christie

[Guest guest]

Sue--My family had to use the Public Guardian for a month of two

because everyone was fighting for custody of mother and because

mother thought that I had been replaced by someone who allowed

terrorists to keep children captive in the house with us. It was

painful until the Public Guardian took over and then suddenly order

reigned and peace descended on the land. Was I ever grateful for his

help!!!!!!

Then I went to court and got custody of mother back after the dust

settled. It cost a fortune in legal fees because the Public Guardian

charges and also has a lawyer who charges and then mother was

assigned a lawyer who charged and then we had to hire a lawyer to

file to get her back. Hopefully mother's tax accountant will find a

way to take all that as a deduction.

[Guest guest]

Sue-

Thank you for clueing everyone in on your trip. I had a similar

situation with my dad and his move. He is MORE stubborn than the mule.

I have heard from an Alzheimers Association worker that it is o.k. to

lie to the patient if it is for the good of the patient. Maybe you can

tell him he is going for a ride. You have to know in your heart that it

is for his safety that he moves. Your mom is probably in the denial

stages, and will realize the move is for the better. Wow, I went

through so much of this...my dad never raised his voice to us yet had

written a note at his apt. before he moved that he hated me. That was

heartwrenching. I realize now that he was having an off day, and that

he really didn't mean it. Their brains are going through so much and it

is just as confusing to them as it is to the family members. My dad had

the hallucinations and falls in the beginning, however both have been

gone for about a year. He still walks, but slowly, and with rigitity and

slightly slumped over. He is on a few antidepressants and

antipsychotics for meds.....Zyprexa and Lorazapam plus sometimes Atavan.

These seem to help his anger and extreme mood swings. Maybe this would

help your dad. Hang in there as it will get a little easier, however,

there may still be days when it seems overwhelming. Just keep coming to

this group and asking questions and venting. Take care of yourself

too!!!

Sandie

[Guest guest]

I wanted to add that I had problems with not wanting to give up driving. I

kept putting off calling the DMV, but was sure that once he went to have his

license renewed, he would fail any test. Well, while I was on a business trip,

he coerced his caregiver to drive him to the DMV. When I got home from my trip,

he proudly showed me his new driver's license! I couldn't believe it. Neither

could anyone else in the family. But, he can be charming. I asked if he had to

take a test. He said he did, but the nice lady at the DMV had given him lots of

help. He didn't have to take a behind the wheel test. (BTW - We're in Fort

, Colorado). So, I explained to him that although when his head is clear

he may be a great driver, that he knows he has vision problems at times and gets

confused at times. I told him that when that happens he could lose

concentration and cause an accident, and that he could hurt or kill someone,

maybe himself or me. He thought about it and hasn't pushed driving since,

although he still keeps his keys in his pocket. Having the keys is a symbol of

independence to him, and makes him feel that he could respond in an emergency.

He is never left alone with access to the car, however. I try, in fact, to

never leave him alone at all.

Anyway, the moral of the story is not to think the DMV will solve the problem

without intervention. You need to let them know your father has dementia.

Another method of controlling the driving problem that I've heard of is to alter

the keys the LBD patient has so that they no longer work. Your mom would still

have a good set, but your father wouldn't. When he tried to start the car, your

mom could " commiserate " with him about the trouble he was having, but not tell

him why the keys don't work.

I hope you can figure out something that works.

[Guest guest]

Sandie,

A word about meds. You will want to monitor what medications your father is

given and how he reacts. If you read the archives on this board, you will find

a great number of them are about medications. Does your father have a good

neurologist who is familiar with LBD? I take my husband to the Colorado

Neurological Institute in Englewood (south side of Denver). The doctors there

are very knowledgeable and helpful with his meds, but it is up to me to let them

know when I think needs a change in meds or dosages. If I had never asked,

he might never have been started on Aricept and might be in a nursing home by

now. Instead, he's doing pretty well, compared to the worst he has been.

[Guest guest]

I had to take my mother's license away and refuse to give it back and

she's still after me to give her the car keys even tho she gave her

car to charity a long time ago. This seems to be another common theme

but I'd guess that it would be a common theme for the aging

population in general.

> I wanted to add that I had problems with not wanting to give

up driving. I kept putting off calling the DMV, but was sure that

once he went to have his license renewed, he would fail any test.

Well, while I was on a business trip, he coerced his caregiver to

drive him to the DMV. When I got home from my trip, he proudly

showed me his new driver's license! I couldn't believe it. Neither

could anyone else in the family. But, he can be charming. I asked

if he had to take a test. He said he did, but the nice lady at the

DMV had given him lots of help. He didn't have to take a behind the

wheel test. (BTW - We're in Fort , Colorado). So, I

explained to him that although when his head is clear he may be a

great driver, that he knows he has vision problems at times and gets

confused at times. I told him that when that happens he could lose

concentration and cause an accident, and that he could hurt or kill

someone, maybe himself or me. He thought about it and hasn't pushed

driving since, although he still keeps his keys in his pocket.

Having the keys is a symbol of independence to him, and makes him

feel that he could respond in an emergency. He is never left alone

with access to the car, however. I try, in fact, to never leave him

alone at all.

>

> Anyway, the moral of the story is not to think the DMV will solve

the problem without intervention. You need to let them know your

father has dementia. Another method of controlling the driving

problem that I've heard of is to alter the keys the LBD patient has

so that they no longer work. Your mom would still have a good set,

but your father wouldn't. When he tried to start the car, your mom

could " commiserate " with him about the trouble he was having, but not

tell him why the keys don't work.

>

> I hope you can figure out something that works.

>

>

>

>

[Guest guest]

-

Yes I constantly monitor my dads meds. and he was on Aricept at one

time. That seemed to give him more hallucinations. He no longer is

having hallucinations and is off the Aricept, however, deals with a lot

of depression and extreme anger mood changes. One minute he is smiling

and the next minute he is angry and trying to yell. Strange how this

disease affects people and how differently. Thanks for continuing to

show how much people can care. I appreciate any opinions on this. My

dad has been dealing with this (and myself as power of attorney over

medical and financial) for the past 5 yrs. But any new or different

heads up is always welcomed.

Sandie