Looking back, my 78 year-old mother has probably had LBD for three years now. She was diagnosed with this one year ago. She is a Christian Scientist (they rely on prayer instead of medication). My father died 4 years ago. She lives with her 2nd husband of < two years only 5 minutes away. She has pronounced PD symptoms. He has short term memory problems that I think helps him cope with her dementia. She seems to go through cycles. Right now, her delusions have been frequent and disturbing. I get calls in the middle of the night or early morning. I can manage to calm her or move her to a different focus and then she gets on with her day, yet with the frequency of the "crises", I am unable to divorce my thought from the event. My energy is spent. Sometimes I feel that my nerves are going to spring or I have the feeling of being trapped.
They live independently. I pay the bills, handle their mail and correspondence, talk on their behalf with his doctors, both their dentists and eye doctors, lawyer etc. Three-way calling is a life-saver.
The neurologist who diagnosed her recommended seraquil. That same week, in the paper was a report on the dangers of the drug and four other anti-psychotics. This is a 78 year-old woman who has never taken an aspirin. I find it dangerous to embark on medication treatment in a household where she is relying so heavily upon her "dear hubby" who has short-term memory trouble to administer a medication that can have fatal consequences if taken improperly. Since her whole life has been in C.S., she does respond to talking in her religous mode.
I went to a second neurologist who suggested nothing but seraquil as well.
I guess I am looking for permission to not accept all phone calls. I feel as I am losing my grip on my own well-being.
For an example, I can help her in a "crises" early in the morning. I spend the day exhausted and locked in her struggles. Five minutes before my work, I call her. She's in a wonderful way. She's had a great day. Almost teasingly, I'll ask her when things got better, why didn't she call me. She said she takes too much of my time as it is and didn't want to bother me.
I'm always telling her she has a choice to make. She chose to "rise above" what she saw and have a wonderful day. I "chose" to be stuck in it.
Any help?

Oh Corikeys, I’m so sorry for what you’re facing. You don’t mention if you have a support for yourself, do you? You say that you work, are you reaching out to people you know and who know you?

You’re not alone. I'€™m relieved to hear that your mother received an accurate diagnosis, though it must be frustrating to keep hearing about medications given her beliefs. I’ll be honest; I don'€™t have any experience in that realm. However, I know that when my father was diagnosed, my mother would not hear about any medications for him. She felt that taking medicine got him into the big trouble (for him it was the hallucinations) in the first place. She was eventually convinced to give aricept a try and it worked and continues to work for my dad.

One thing you say is I'm always telling her she has a choice to make. She chose to "rise above" what she saw and have a wonderful day. I "chose" to be stuck in it.

Part of this disease is the fluctuations – oh, they can be sooooo frustrating at times. We'€™ve been there. I'€™m sure others have stories to share about that part of this disease.

I don'€™t know where you live, but a friend of mine has parents living in Colorado Springs (they're in their 90'€™s, both suffering from varying degrees of dementia and still living independently) and she lives on the east coast. She too was taking calls in the middle of the night but she had no way to get to them quickly. She was able to talk to a local elder care service. They came into the home and assessed the situation and made recommendations about bill paying, groceries, mediations, driving, etc. Her parents wouldn’t listen to her, but they agreed to listen to this outside person. I’m not sure if you have access to anything like that but it might be worth a try. Are you able to talk to her husband about this? You could start looking here:
http://www.alz.org/carefinder/careoptions/options1.asp
And here
http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx

Another good source for you may be to reach out to a yahoo LBD Caregiver group that discusses caregiving issues. You can find them here.
http://health.groups.yahoo.com/group/LBDcaregivers/join

Good luck and keep in touch. While every situation with LBD is unique, we do know some of what you face and please know that you’re not alone.

I am not a doctor, but would like to reply on the issue of Seroquel and hallucinations. (I am also going to post this information on the Medications forum.)

The first line of treatment in LBD is normally the use of a cholinesterase inhibitor, which is approved by the FDA for Alzheimer's - Aricept, Exelon or Reminyl. They have been shown to help help cognition and reduce psychiatric features of LBD in some people, so that's always the safest first step.

Regarding antipsychotic medications... The biggest risk is associated with traditional antipsychotics, like Haldol. Those are absolutely contraindicated in LBD. The atypical antipsychotics, like Seroquel, are definitely less problematic, though not entirely without risk. That is why the doctors should follow the theory of 'Start low, go slow' any time they prescribe atypical antipsychotics.

The issue of antipsychotics is very sticky in LBD. It's balancing the need to improve the quality of life for both patients and caregivers with the risks of any side effects from them. This is a decision that must be made jointly by the treating physician and the caregiver/family so that everyone can feel comfortable that they have made the best decision in their individual circumstances.

Sometimes the choice seems clear, like if the hallucinations are causing the patient to behave in a life-threatening manner to themself or a caregiver. In that situation, the risk of side effects seems more tolerable.

Othertimes it may be less clear when trying to select the lesser of two evils. For example, the patient is agitated or anxious because of the hallucinations, and the caregiver is getting little sleep. Nobody is doing well, and the stress/worry magnifies the burden on the caregiver.

Sometimes, hallucinations are frequent but more benign, and there doesn't seem to be a reason to risk potential side effects.

Keeping a detailed journal about the patient's response to any medication changes will help both you and your doctor make future decisions about what medications to use.

As far as your father's memory problem goes and dispensing medication, one tool that was very helpful for my father was an automatic medication dispenser. I could set up a week's worth of medications for him, and the alarm would ring and his next dose would be released. He had no access to the rest of the medications. It was a great solution for us!

Hope that helps,
Angela

Dear Corikeys,
After reading your post, what keeps concerning me is your need to take a break from care giving. For me, some of my scariest times have been when I long ago passed "the end of my rope".

How can you widen their base of support? You and your mother need to clarify her future needs and get a sense of how she would want those needs addressed. Are you also C.S.? Might this be done with her minister?
Topics such as dehydration, hallucinations, nutrition, safety, delusions, swallowing, aspiration pneumonia, parkinson tremors.....in light of your mother's religious beliefs, need discussed. It seems too much for you alone. Maybe the church has volunteer visitors/caregivers to assist with some needs.

Keep us posted.
Sue & Harry Lewis in WV
Harry was Dx at age 60. He requires FT caregiving

I'm always telling her she has a choice to make. She chose to "rise above" what she saw and have a wonderful day.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Corikeys,
I read you post and the one thing that caught my eye was the fact that you told your Mom she has a choice and she really doesn't understand that, this diesease is so up and down and is the hardest part of it.
On the note of seroquel it can work wonders for some people, for my Husband it worked Ok it got us threw many tough days.
In my opinion I think you need a 3rd party to help sort this all out, you are emotionally exhausted, maybe you could start with Elder Care they could come in an see whats going on and give you ideas as to how to handle things, with Both your Mom and her Husband having a dementia its only a matter of time before some thing happens, why not try and figure this out now before that happens . I wish you well!
Hugs Irene