we've been in an alf and are back home again.

[Guest guest]

Millie, not her real name, Mother-in-law- " lie " , is back home. We had

her in Alterra Clare Bridge, a Brookdale facility in Cape Coral. The

more I visited her, the more I realized they didn't know Lewy from

ALZ.

Millie would get physical with the ALZ. and the poor Alzies are

defenseless to tattle.

Apparently in Florida the contracts you sign say it's not their fault

if another patient causes another a broken hip, or worse.

We also could not ever get the facility to tell us exactly what they

were charging us for. If they asked Millie if she wanted a bath, and

she said no, was she charged? We figured we just couldn't continue

to be left in the dark. there was a $3,000 move in charge, and we

just were being strung alon to the 3 month mark so that would not be

prrated on the move-in fee.

If facilities treat all dementias the same, and the staff does not

inform the workers who is Lewy, and who is AlZ, then they aren't

protecting the Alzies.

Our Lewy can get very aggressive and violent. I couldn't live with

her ultimately causing a broken hip and/ or death of another person's

grandmother.

Now she is at home with a sitter coming in 4 hours per day. That

leaves her alone for roughly 90 mins in the a.m. and 90 mins in the

afternoon.

Unfortunately, we need to change caregivers as the one we have looks

about 17, but is actually 42, mother of two. Millie's positive the

the aide was stealing from her, and that a child wouldn't know how to

take care of her. We have requested a more matronly person. Millie

had an episode while I was talking on the phone to my husband, and I

overheard Millie threatening to kill the aide if she ever came into

her house again.

So, in Lewyville, there is rest for the caregivers. Nothing is

perfect, and nothing is predictable.

Our major problem now is that even though she is always cold, she

wakes up drenched in sweat several times a day. We are changing

bedding and jammies often, and so the washer and dryer are now

getting a workout.

A while ago, I asked the group if itching were a major problem for

any other Lewys. No one responded, but it has become one of our

major problems now.

I give her benedryl, and hospice agrees, but i need to run it by our

panel of experts. So, panel, what do we know about antihistamines

and Lewyvillers?

I have been away from the sight since school started, but now that I

am caregiving at home again, I need the help.

thanks for your help, that I know is out there.

Carol

[Guest guest]

Carol,

I would be very suspecious of all the sweating. Has she had testing for how her

kidneys and bladder are working or if she has a UTI? This sounds like you need

to see a MD to me. And the aggression can be directly related as well as the

itching.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

we've been in an alf and are back home again.

Millie, not her real name, Mother-in-law- " lie " , is back home. We had

her in Alterra Clare Bridge, a Brookdale facility in Cape Coral. The

more I visited her, the more I realized they didn't know Lewy from

ALZ.

Millie would get physical with the ALZ. and the poor Alzies are

defenseless to tattle.

Apparently in Florida the contracts you sign say it's not their fault

if another patient causes another a broken hip, or worse.

We also could not ever get the facility to tell us exactly what they

were charging us for. If they asked Millie if she wanted a bath, and

she said no, was she charged? We figured we just couldn't continue

to be left in the dark. there was a $3,000 move in charge, and we

just were being strung alon to the 3 month mark so that would not be

prrated on the move-in fee.

If facilities treat all dementias the same, and the staff does not

inform the workers who is Lewy, and who is AlZ, then they aren't

protecting the Alzies.

Our Lewy can get very aggressive and violent. I couldn't live with

her ultimately causing a broken hip and/ or death of another person's

grandmother.

Now she is at home with a sitter coming in 4 hours per day. That

leaves her alone for roughly 90 mins in the a.m. and 90 mins in the

afternoon.

Unfortunately, we need to change caregivers as the one we have looks

about 17, but is actually 42, mother of two. Millie's positive the

the aide was stealing from her, and that a child wouldn't know how to

take care of her. We have requested a more matronly person. Millie

had an episode while I was talking on the phone to my husband, and I

overheard Millie threatening to kill the aide if she ever came into

her house again.

So, in Lewyville, there is rest for the caregivers. Nothing is

perfect, and nothing is predictable.

Our major problem now is that even though she is always cold, she

wakes up drenched in sweat several times a day. We are changing

bedding and jammies often, and so the washer and dryer are now

getting a workout.

A while ago, I asked the group if itching were a major problem for

any other Lewys. No one responded, but it has become one of our

major problems now.

I give her benedryl, and hospice agrees, but i need to run it by our

panel of experts. So, panel, what do we know about antihistamines

and Lewyvillers?

I have been away from the sight since school started, but now that I

am caregiving at home again, I need the help.

thanks for your help, that I know is out there.

Carol

[Guest guest]

,

I too have very sensitive skin. And something I try to do. you didn't mention.

Hydrate with water inside, It does wonders for my skin. When my skin gets too

dry, I try and drink more water and it really helps.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: we've been in an alf and are back home again.

Benadryl bad!

VERY BAD!

Probably the worst of the antihistamines available OTC.

The problem is that benadryl is sedating, for one, and blocks the

action of acetylcholine. The combo is pretty rough on people with

DLB, a disease characterized by a distinct lack of acetylcholine.

Skin itching is *really* miserable to treat. When you look at the

literature, the " new generation " antihistamines aren't very good at

treating it...turns out, most of the relief when there aren't visible

hives is caused by the sedation.

*sigh*

I would also avoid the Rx anti-itch medication Zonalon - despite what

some dermatologists will tell you, it *IS* systemically absorbed, and

it has a potent anticholinergic activity. It's also sedating,

despite being a topical cream.

Managing itch is a bear - I know - I have a history of an intensely

itchy skin problem. I'd try cool compresses, natural fiber clothing,

Domeboro compresses (incredibly soothing), colloidal oatmeal baths,

Aquaphor ointment, and maybe, if there's one particularly itchy area,

a VERY low-potency corticosteroid *ointment* (not cream - the glycol

in the creams can aggravate the problem). I don't *think* there's an

OTC Hydrocortisone Acetate 1% ointment...

Correction: there is. CORTAID® Maximum Strength Ointment. There's

probably a generic. Ask your pharmacist. For best results, apply it

right after a bath, and don't dry the skin too vigorously - it's best

to pat, and to air dry. On that topic, keep the bath/shower under

98F, which will feel a trifle cool.

If the OTC ointment doesn't do the job, and you consult a

dermatologist, I would suggest Elidel or Protopic rather than a

stronger steroid. That's not a controversial notion in most of the

country, but you never know what you'll run in to out in the real world.

If the skin looks red or sensitive, a lotion with licorice root

extract can reduce the redness. I think Aveeno and Eucerin both make

" calming " formulas that have licorice extract.

Some combo of these things will probably help. The problem is finding

the right one.

Sorry to hear you're in the midst of chaos. Right now, it's 2:30 in

the morning here, and I'm trying to make a PowerPoint to explain to

Cal why he *REALLY NEEDS* a pacemaker.

*sigh*

[Guest guest]

Hi Carol,

I'm not very knowledgable about the meds and all, but I do know that a lot of

pain meds cause itching and sweating. Is your Millie on any type of pain meds?

Codeine and morphine are 2 of the worse causes of itching and sweating but

almost any other pain med. could cause this as well. Just a thought.

Take good care,

Keli

adhd5464 wrote:

Millie, not her real name, Mother-in-law- " lie " , is back home. We had

her in Alterra Clare Bridge, a Brookdale facility in Cape Coral. The

more I visited her, the more I realized they didn't know Lewy from

ALZ.

Millie would get physical with the ALZ. and the poor Alzies are

defenseless to tattle.

Apparently in Florida the contracts you sign say it's not their fault

if another patient causes another a broken hip, or worse.

We also could not ever get the facility to tell us exactly what they

were charging us for. If they asked Millie if she wanted a bath, and

she said no, was she charged? We figured we just couldn't continue

to be left in the dark. there was a $3,000 move in charge, and we

just were being strung alon to the 3 month mark so that would not be

prrated on the move-in fee.

If facilities treat all dementias the same, and the staff does not

inform the workers who is Lewy, and who is AlZ, then they aren't

protecting the Alzies.

Our Lewy can get very aggressive and violent. I couldn't live with

her ultimately causing a broken hip and/ or death of another person's

grandmother.

Now she is at home with a sitter coming in 4 hours per day. That

leaves her alone for roughly 90 mins in the a.m. and 90 mins in the

afternoon.

Unfortunately, we need to change caregivers as the one we have looks

about 17, but is actually 42, mother of two. Millie's positive the

the aide was stealing from her, and that a child wouldn't know how to

take care of her. We have requested a more matronly person. Millie

had an episode while I was talking on the phone to my husband, and I

overheard Millie threatening to kill the aide if she ever came into

her house again.

So, in Lewyville, there is rest for the caregivers. Nothing is

perfect, and nothing is predictable.

Our major problem now is that even though she is always cold, she

wakes up drenched in sweat several times a day. We are changing

bedding and jammies often, and so the washer and dryer are now

getting a workout.

A while ago, I asked the group if itching were a major problem for

any other Lewys. No one responded, but it has become one of our

major problems now.

I give her benedryl, and hospice agrees, but i need to run it by our

panel of experts. So, panel, what do we know about antihistamines

and Lewyvillers?

I have been away from the sight since school started, but now that I

am caregiving at home again, I need the help.

thanks for your help, that I know is out there.

Carol

__________________________________________________

[Guest guest]

Dina,

I am so glad you had a good experience. the night med tech didn't know Millie

was Lewy Body.

You provided good info for those heading to any facility.

The bookkeeping was too slippery, and we are still waiting for a final bill.

Consumer beware! We originally were only doing day stay, but Millie wasn't

able to do mornings.

I will say the care at Alterra was good, and I appreciated the work the aides

and assistants did. Administration was our big problem.

Carol

__________________________________________________