Learning from this list

[Guest guest]

Here are some things, large and small that I learned from this list.

Dad died four weeks ago to day, peacefully, at home, surrounded

by people who love him.

Find a neurologist you trust. The disease changes over time and

the medications to make the patient most comfortable also change.

We saw a " geriatric specialist " first, who put Dad on five or six

different medications all at once. Some were good, some were not,

but adding them all at once was bad. Then we saw a highly regarded

geriatric neurologist who did all the right tests and was slow about

adding medications, but who constantly broke appointments and was

hard to reach. Then I took 's recommendation and saw Dr.

Gomperts at MGH. He never decided which of the untreatable

progressive dementias Dad had, but was always available within a

few hours and worked with me to balance medications as Dad's

parkinsonianism and fears got worse.

Second, watch all medications. Dad's serious problems started

after he was put on vesicare by his urologist. Who would guess

that medications for urinary frequency could have terrible effects

on cognition? If I had known about this list, Dad might have had

another year or eighteen months of slowly declining normality, instead

of a rapid decline into dependency. Later, he had a bad reaction to

Benedryl - something you can give to babies.

At first, Dad's worst problems were confusing times of day. Even

before he was in serious trouble, he would show up for PT in the

middle of the night. We started with caregivers from breakfast until

afternoon nap, then from dinner time to bed time, leaving him alone

while he normally slept. If he awoke, he had no way to orient himself

in time. I built him a 24 hour, single-handed clock that showed when

he should go back to sleep and when he should expect someone to

be there. Here are the instructions:

http://pragmaticcaregiver.blogspot.com/2007/05/id-like-to-buy-clue-part-1.html

The pragmatic caregiver has lots of good suggestions.

Dad's temporal disorientation lead to his calling me at all times of the

day and night, which got to be a problem as he forgot phone numbers

and called other people by mistake. I got him a memory phone without

number buttons. He was able to read long after he was able to talk

coherently, so I just put names on the buttons rather than pictures.

Learning to adapt to his condition was really hard - from the moment

when a shoe-store clerk suggested shoes with velcro closing that I

thought he would hate, but the person he'd become found them

fascinating and wonderful, to the moment when I realized that he

really didn't need his partial plate - nobody cared if he had front teeth

or not ... a whole series of letting-go incidents. But so many voices

on the list kept saying that we the caregivers need to move into

the world our loved ones now inhabit because they can't come back

to ours ... and I learned to live with it. There were bad times when

other people had to remind me that he couldn't come into my world,

even if it was Christmas and I just wanted him to go downstairs

for dinner.

The voices on this list also helped me understand that the hospice

doctor's recommendation for a stair lift was good, even though I

thought climbing stairs kept him strong and he had never fallen

there. Safety is more important than strength when you've got a

disease that's going to be fatal.

The list also helped with legal issues. Before his serious decline,

Dad had given me power of attorney, added my name to his

bank accounts, and made me his health care proxy. It was on

this list that I learned about what Massachusetts calls the

" Comfort Care / Do Not Resuscitate " form. I signed them

during hospitalizations in the first few years, but those forms

were only binding during the hospital stay. The official form had

to be signed by his regular physician. I also got a letter from that

doctor saying that he was incompetent due to dementia, which

I needed once or twice to get a bank to accept my power of

attorney.

After he got so unstable on his feet that he shouldn't try to walk

alone, I found a motion sensor alarm for his bed. His caregivers

added a baby monitor, so they could go downstairs to make meals

without worrying that he would try to get up and fall.

And then there was Capgras. His problem was more about being

in a house that looked like his house than thinking that people were

not themselves. By the time that symptom arose, he had great

difficulty getting out of the house, so driving him around the block

wasn't a good solution. Generally, talking about the pictures of

his parents, my mother, and his boat would convince him that if

he wasn't at home, he was still in a good place.

And all the bathroom stuff - the toilet seat booster, the booster

with arms, depends, commode... constantly letting go of who

he was, and adapting to who he was becoming. One non-toilet

related bathroom accessory was a long shower bench that he

could sit on outside the tub, then slide across into the tub and

swing his legs in. Even with grab bars all around, the step into

the tub was frightening - to him and to his caregivers. The long

bench solved that problem without having to redo the bathroom.

Some messages I took selectively, deciding that the quality of

Dad's life mattered more than keeping him completely safe. So

he ate whatever he wanted because texture is a lot of the pleasure

of food and food was something he enjoyed to the last day of his

life. No thickened liquids, no pureed diet. Maybe his pneumonia

was caused by aspiration, maybe he would have lived long enough

to be completely bedridden, sucking on a bottle if I hadn't been

stubborn about food, but I can live with my decision there.

And hospice and staying at home to the end. He didn't go to a

doctor's office for the last eighteen months of his life. Regular

visits from the hospice nurse kept minor problems from flaring

up, and knowing that we had a doctor who would come to the

house if something went wrong was a huge relief - to him and

to all of us.

Thank you, and everyone, for walking this road beside

me.

Sincerely,

Ann

(very long-winded today)

[Guest guest]

Ann,

What a great list! Could I get your permission to share it (and your email

address) with the local support group?

Probably once a month I recommend the 24-hour clock from the pragmatic caregiver

to people in the local support group or to those on the LBDA Forum. I think

it's a great idea but I've never heard from anyone other than SEA that it

worked. Did it address your father's confusion?

One item I'm surprised you didn't mention is making advance arrangements for

brain donation!

Hope you are doing well,

Robin

>

> Here are some things, large and small that I learned from this list.

> Dad died four weeks ago to day, peacefully, at home, surrounded

> by people who love him.

>

>...

> At first, Dad's worst problems were confusing times of day. Even

> before he was in serious trouble, he would show up for PT in the

> middle of the night. We started with caregivers from breakfast until

afternoon nap, then from dinner time to bed time, leaving him alone while he

normally slept. If he awoke, he had no way to orient himself in time. I built

him a 24 hour, single-handed clock that showed when he should go back to sleep

and when he should expect someone to be there. Here are the instructions:

>

> http://pragmaticcaregiver.blogspot.com/2007/05/id-like-to-buy-clue-part-1.html

>

>...

>

> Sincerely,

>

> Ann

> (very long-winded today)

>

[Guest guest]

Ann - Thank you for this wonderful post. I'm saving it in the Links area for

future caregivers since you give so many useful recommendations for this Lewy

journey. I'm also glad you were able to make that clock recommended. I miss

- wish he had come back - but at least we have many of his wonderful posts

in the Links section. You certainly did a wonderful job for your dad and I'm

sure he's especially proud of his daughter and what she was able to do to keep

him home & content for so long!

PS - and can I also share it with our local support group too?

>

> Here are some things, large and small that I learned from this list.

> Dad died four weeks ago to day, peacefully, at home, surrounded

> by people who love him.

>

> Find a neurologist you trust. The disease changes over time and

> the medications to make the patient most comfortable also change.

> We saw a " geriatric specialist " first, who put Dad on five or six

> different medications all at once. Some were good, some were not,

> but adding them all at once was bad. Then we saw a highly regarded

> geriatric neurologist who did all the right tests and was slow about

> adding medications, but who constantly broke appointments and was

> hard to reach. Then I took 's recommendation and saw Dr.

> Gomperts at MGH. He never decided which of the untreatable

> progressive dementias Dad had, but was always available within a

> few hours and worked with me to balance medications as Dad's

> parkinsonianism and fears got worse.

>

> Second, watch all medications. Dad's serious problems started

> after he was put on vesicare by his urologist. Who would guess

> that medications for urinary frequency could have terrible effects

> on cognition? If I had known about this list, Dad might have had

> another year or eighteen months of slowly declining normality, instead

> of a rapid decline into dependency. Later, he had a bad reaction to

> Benedryl - something you can give to babies.

>

> At first, Dad's worst problems were confusing times of day. Even

> before he was in serious trouble, he would show up for PT in the

> middle of the night. We started with caregivers from breakfast until

> afternoon nap, then from dinner time to bed time, leaving him alone

> while he normally slept. If he awoke, he had no way to orient himself

> in time. I built him a 24 hour, single-handed clock that showed when

> he should go back to sleep and when he should expect someone to

> be there. Here are the instructions:

>

> http://pragmaticcaregiver.blogspot.com/2007/05/id-like-to-buy-clue-part-1.html

>

> The pragmatic caregiver has lots of good suggestions.

>

> Dad's temporal disorientation lead to his calling me at all times of the

> day and night, which got to be a problem as he forgot phone numbers

> and called other people by mistake. I got him a memory phone without

> number buttons. He was able to read long after he was able to talk

> coherently, so I just put names on the buttons rather than pictures.

>

> Learning to adapt to his condition was really hard - from the moment

> when a shoe-store clerk suggested shoes with velcro closing that I

> thought he would hate, but the person he'd become found them

> fascinating and wonderful, to the moment when I realized that he

> really didn't need his partial plate - nobody cared if he had front teeth

> or not ... a whole series of letting-go incidents. But so many voices

> on the list kept saying that we the caregivers need to move into

> the world our loved ones now inhabit because they can't come back

> to ours ... and I learned to live with it. There were bad times when

> other people had to remind me that he couldn't come into my world,

> even if it was Christmas and I just wanted him to go downstairs

> for dinner.

>

> The voices on this list also helped me understand that the hospice

> doctor's recommendation for a stair lift was good, even though I

> thought climbing stairs kept him strong and he had never fallen

> there. Safety is more important than strength when you've got a

> disease that's going to be fatal.

>

> The list also helped with legal issues. Before his serious decline,

> Dad had given me power of attorney, added my name to his

> bank accounts, and made me his health care proxy. It was on

> this list that I learned about what Massachusetts calls the

> " Comfort Care / Do Not Resuscitate " form. I signed them

> during hospitalizations in the first few years, but those forms

> were only binding during the hospital stay. The official form had

> to be signed by his regular physician. I also got a letter from that

> doctor saying that he was incompetent due to dementia, which

> I needed once or twice to get a bank to accept my power of

> attorney.

>

> After he got so unstable on his feet that he shouldn't try to walk

> alone, I found a motion sensor alarm for his bed. His caregivers

> added a baby monitor, so they could go downstairs to make meals

> without worrying that he would try to get up and fall.

>

> And then there was Capgras. His problem was more about being

> in a house that looked like his house than thinking that people were

> not themselves. By the time that symptom arose, he had great

> difficulty getting out of the house, so driving him around the block

> wasn't a good solution. Generally, talking about the pictures of

> his parents, my mother, and his boat would convince him that if

> he wasn't at home, he was still in a good place.

>

> And all the bathroom stuff - the toilet seat booster, the booster

> with arms, depends, commode... constantly letting go of who

> he was, and adapting to who he was becoming. One non-toilet

> related bathroom accessory was a long shower bench that he

> could sit on outside the tub, then slide across into the tub and

> swing his legs in. Even with grab bars all around, the step into

> the tub was frightening - to him and to his caregivers. The long

> bench solved that problem without having to redo the bathroom.

>

> Some messages I took selectively, deciding that the quality of

> Dad's life mattered more than keeping him completely safe. So

> he ate whatever he wanted because texture is a lot of the pleasure

> of food and food was something he enjoyed to the last day of his

> life. No thickened liquids, no pureed diet. Maybe his pneumonia

> was caused by aspiration, maybe he would have lived long enough

> to be completely bedridden, sucking on a bottle if I hadn't been

> stubborn about food, but I can live with my decision there.

>

> And hospice and staying at home to the end. He didn't go to a

> doctor's office for the last eighteen months of his life. Regular

> visits from the hospice nurse kept minor problems from flaring

> up, and knowing that we had a doctor who would come to the

> house if something went wrong was a huge relief - to him and

> to all of us.

>

> Thank you, and everyone, for walking this road beside

> me.

>

> Sincerely,

>

> Ann

> (very long-winded today)

>

[Guest guest]

Ann, I am so sorry to hear about the passing of your Dad. My sympathies to you

and your family. You are a wonderful person to post so much great information

to all of us--who then pass it on to others. I had never seen The Pragmatic

Caregiver and don't know why I hadn't heard about it. I see it was written by

and his partner in the care for their father with LBD, Cal. was

always terrific in helping with medication questions. Has anyone heard from

him? I see that his blog stopped two years ago. . . Thank you so much for

posting this extremly helpful blog. Wishing you many happy memories of your

Dad, Norma

[Guest guest]

,

>

> PS - and can I also share it with our local support group too?

>

I'd be delighted if you - or anyone - can benefit from my thoughts and

experience. Please feel free to use the post anyway you think might

help.

One funny note. Dad was afraid to go outside the house after he

started the vesicare, so I never worried about his wandering off,

but as he got unstable walking, everybody worried about his going

down stairs alone at night. He had a life-size cardboard cutout of

Elvira - the late night horror movie hostess - and somebody made

a sign for her to hold saying " It's night time. Go back to bed! " She

stood on a couple of boxes that blocked the upstairs hall. Depending

on who was there on the late shift, it might be just boxes and sign

or it might be Elvira as well. Don't know of it worked, but it was

funny.

Best regards,

Ann

[Guest guest]

LOL - love the life size Elvira w/ sign 'go back to bed' LOL

>

> ,

>

> >

> > PS - and can I also share it with our local support group too?

> >

>

> I'd be delighted if you - or anyone - can benefit from my thoughts and

> experience. Please feel free to use the post anyway you think might

> help.

>

> One funny note. Dad was afraid to go outside the house after he

> started the vesicare, so I never worried about his wandering off,

> but as he got unstable walking, everybody worried about his going

> down stairs alone at night. He had a life-size cardboard cutout of

> Elvira - the late night horror movie hostess - and somebody made

> a sign for her to hold saying " It's night time. Go back to bed! " She

> stood on a couple of boxes that blocked the upstairs hall. Depending

> on who was there on the late shift, it might be just boxes and sign

> or it might be Elvira as well. Don't know of it worked, but it was

> funny.

>

> Best regards,

>

> Ann

>

[Guest guest]

Ann: What a wonderful gift you have given to people just joining our group

due to necessity!! You have carefully described the problems you faced

during your father's illness and how you coped with them. Would that we all

have had the wisdom to do the same thing. I am sorry for your loss but very

pleased that you are not doing Monday morning quarter-backing and thinking

about what you could have/should have done. We all have done the best we

could with the information we had and be able to cope with the truth that we

took the best care of them we knew how. Peace to you in the days and weeks

ahead. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'