Re: Re: Uncontrollable situation , - to lin

[Guest guest]

Dear Nina - Thanks so much for your message. No wonder the issue about MDs - I

apologize for not getting you weren't in the states. Of course it's hard to

manage care long distance. I simply missed that very important point. May I ask

where you are and what kind of health providers and facilities are near you?

None of us " prescribe " for or direct each other about our LOs care. That said,

I suspect the increased Seroquel will be helpful. If it turns out your mom

doesn't need that dosage long-term, great. Meanwhile, as you have the various

possible other health concerns checked out, it should be useful in keeping her

calm. Obvioiusly you were able to get the meds into her - well done! Personally,

I do whatever it takes (without harm) to get my mom's meds delivered.

Remember that anxiety, agitation, paranoia and confusion (and many others) -

and the behavior that accompanies them - are all common in LBD. So we shouldn't

be surprised when they appear. We do want to address them, whether they are

coming directly from the disease or as a result of other issues.

Are your family members familiar with LBD? They would likely find some of the

basic info from the LBD Association site very helpful. That material explains

the features of LBD and help us understand what meds are safe and what not; what

kind of non-medication treatments may help; and how families can best respond.

Many of us here have found the info - and this site - to be lifesavers.

If and when you get in-home care, sharing that info with carers will also be

very useful. Even good nurses and docs who don't understand LBD can be totally

baffled by what to do unless they are educated. For example, my mom was first

treated by a neurologist who teaches at a major medical school - and he wasn't

aware that meds for Alzheimer's can be dangerous for those with LBD.

Yes, the process of finding good docs and good care - in-home or at a facility

- IS exhausting. Diseases of our loved ones take a major toll on us, too -

physical, emotional and spiritual. It's wise to be aware of that, and to be kind

and gentle to ourselves while we are caring for our LOs. I agree the burden will

ease a bit - you'll find out what treatments your mom needs; what the living

arrangements will be, etc.

We are on the journey with our moms - and so this disease greatly affects us,

too. Your love for your mom, and your heart's desire is to do what you can for

her. We daughters can't change the disease, but we can be advocates for our

moms, educators for our sibs and health providers, and good friends to ourselves

when times are difficult.

Keep us posted, please, Nina - we all do care!

Peace, Lin

Nina Jordan wrote:

Hey Lyn

Today was so exhausting! my brother ( who came from the states) and my sister (

who married and lives outside the house) and i went to check out two nursing

association for inhouse care. the rates are so expensive! but i guess you cant

really place a price on good health care especially when i have to go to work.

We are goingto arrange with two nurses to come by and sort of hangout at bit at

home to get a feel of which nurse my mom warms up to and which one we feel is

more approapiate.

RIght now my mother is on 10 mg aricept ( where she has t take 5mg in the

morning and 5mg in the evening) and we recently increased the dosage of her

seroquel from 25mg only at night to 25mg after lunch and another 25 mg before

bed.

Also we took my mother out today, she was ok i guess , but in a good mood. was

very paraniod and kept thinking we were trying to do htings for her . once we

got home she refused to go inside the house because she was afraid she would

never be able to go out.

eventually we got in side , im just so exhausted.

I think things will be a little crazy until we land the help we need and also

find a good neurologist that will handle her locally- but the process is so

difficult.

Thanks again

hugs

nina

Welcome to LBDcaregivers.