Skilled Nursing or Home Care

[Guest guest]

Hi,

I am new to this group, my mom (85) was diagnosed with LBD about a month ago.

She has lived with me and my family for 10 years. She was previously diagnosed

with AD but I changed her health insurance and  the new Primary MD referred her

immediately to a wonderful Neurologist who then referred her to a brilliant

Neuropsychologist. This has been a lot to take in but very helpful in her

treatment. She has been on Seroquel for many years for hallucinations with only

a diagnosis of depression (from her previous health care plan and physicians).

We are now slowly taking her off the Seroquel and the neurologist wants to try

the Exelon patch again (she was on it for one week but then got a UTI so the

neuro took her off because her behavior was altered and she couldn't tell if she

was having any adverse reactions to the Exelon). She has recurrent UTI's and is

on antibiotics most of the time. It's very difficult to get her to drink enough

liquids to stay hydrated

and to take showers and baths to keep bacteria away. Of course, her LBD keeps

her from understanding the importance of either one of those things! We have

been to the ER numerous times for various reasons which were usually caused by

UTI's and now I believe medication reactions. She is up most nights and down

most days. The neuropsychologist suggested she go to an adult day care 3-5 times

per week to keep her engaged during the day so she will sleep at night. The

problem is making her go, she is resistant to going out for anything - dr. appts

are a nightmare for me. She has always liked being at home, in the house. I

haven't hired any in-home caregivers because I feel like it will be another

thing for me to coordinate and oversee. I have a couple of relatives who will

come and stay with her for a weekend or a few weeks to help out and I can get

out and get a break. My husband travels overseas, I have a 17 year old son who

is a junior in high school and

starting to search for colleges and a 20 year old son in his first year at

college and I can't give any of them my attention or at least very little of it.

Needless to say I am stressed, overwhelmed and burned out. I have taken her to

visit the Adult Day Care Center (required by the center before we actually apply

for admission). I felt like I was taking my special needs child to pre-school

for the first time, I'm going to send her out to figure out the world on her own

without me. I am visiting (on my own) skilled nursing facilities for when I feel

I just can't do this any more, I can't even imagine placing her in some of them

(very depressing). The major constraint is that she has Medicaid (Medi-Cal here)

which limits where she can go. Of course, the Assisted Living Facilities are

wonderful but so expensive. Even though she was only diagnosed recently we have

been dealing with LBD symptoms for many years and now we know what it is called.

I'm very

glad I found this group, there isn't a LBD support group that close to where I

live but I'm considering traveling to the nearest one. I live in the SF bay area

so driving 30-40 min is common. I hope to get to know you all better.

Thanks for reading,

Sherry