I am the eldest daughter by default. My brother was killed in 'Nam. My mother is 82 years old and counts on me, only, not my remaining two sibilings. She's not my problem. My husband has had Parkinsons' Disease for 15 years. We have aggressively pursued his best treatment and he is as physically adequate as he was 5 years ago. This might be a wonderful success except his mind is going away...away...away. We are North Floridians; so have the excelllent resourses of Emory Univerisity in Atlanta, University of Miami, and Mayo Clinic at Jacksonville. We have settled in at Mayo Jax and are extremely pleased with the service, care, and ability found there. He has Diffuse Lewey Body Diseae which is proving to be much more disabling than the PD.

I am an extremely strong individual, yet I feel myself drowning. My mother wants my attention; my part-time business needs my attention; my children think baby-sitting my grandchildren is a given; and my spouse thinks everty time he speaks my name I should respond with undivided attention.

Vickey, Welcome to ECO. Big hugs for you and your siblings are facing. At least you are supporting each other. My bro does well also. I hope you will go to the New Caregivers Room and introduce yourself with a description of your needs. It is easy for a new comer to get lost in an older post. Amazing how many tears are in reserve for the next moment.

Hi Nell. I'm sorry to hear about your husband. My mother is 73 and was diagnosed with LBD several years ago. It has been heartbreaking to see the changes in her. She has had a pretty positive attitude all along but recently has shown significant decline. She is now suffering from Capgras Syndrome which I have no idea how to deal with. This is a Syndrome where the person thinks people they love or even objects have been replaced with imposters. This is rare but not that uncommon with Lewy Bodies. I have five siblings and four of them take equal turns with me caring for my mom. We have done amazingly well as a family with only my brother opting to do nothing to assist with mom's care. We are blessed in that we are able to hire two caregivers as well to help and even with that it is a huge undertaking. I don't know how you do it, really. I know that when I feel overwhelmed I just think of my mom and how she was and what she has meant to me over the years and I seem to gain strength from that. I then think of my family and how hard everyone is working to keep mom in her house - where we all know she wants to be. She was such a good mom to all of us. I honestly don't know if I have any tears left and then suddenly, there's another waterfall.

Nell, hello and welcome.
My hubby suffered with Parkinsons with LBD.He passed away the 11th of this year from a blood clot that broke from the legs and went to the lungs, also bacteria pneumonia and other complications that followed.The best thin is for them to keep physically active as long as possible.We dealt with the paranoid psychosis from the beginning along with depression.Serpquel was good for him along with celexa.He was at his worst when he had UTI.The paranoa and psychosis really showed up.
Most of how I dealt with the mental decline was to think as he thought.Humor them as much as possible.They see much in their lives as someone wanting to hurt them.I would tell him I told everyone to leave him alone .He would know me one day and not the next.I became who he wanted me to be.Too many times he viewed me as the bad guy.I would tell him I was sorry and it would not happen again.
Many times , when he was having some bad times I would leve the room and let it run the coarse.Their memory is short on what they say.
They live with fear of being harmed , physically and emotionally.You have to keep reassuring them that all is ok.
If you try to reason with your norm they will become more agitated.
When hubby was able to walk I had to becareful he did not act on his paranoia.
You may find your self on the receiving end of verbal abuse.This is when you step back and disconnect from being his wife.Why, because he sees you as someone else.You have to be able to have enough strength and self confidence to not crumble when this happens.It is the disease talking and not the hubby you once knew.
You are fortunate to have good hospitals in your area.I have had to educate too many in the medical community about LBD.
The behavior will have to be treated with meds.Which one works for him will be through trial and error.Just becareful they do not try to control the behavior with high doses of meds that make them a zombie.Make sure they start low.Some meds , like Ativan, made hubby worse.A good neurologist will know their meds well enough to know what may happen.
I was fortunate as I had a gheriatric doctor from the VA.He and his team never made a hasty decision.Not like the chain of doctors who are not informed about meds , the elderly and LBD WITH DEMENTIA

Welcome, Nell. The first months nearly drove me nutz, too. But somewhere along the way, I learned how to say NO and how to voice my own needs in a speaking voice rather than allowing them to build to a scream. I stopped making excuses for the able-bodied adult children and concentrated my patience on those who could not help driving me nutz. The next big step was to learn not to actively HATE others who did not have my level of responsibility... I used to seethe watching my adult son and husband drive down the driveway when I couldn't just take off whenever I had an errand or wanted to leave the homestead. I learned to delight in small things and take my joy wherever I could grab some. I lowered my standards for cooking and housekeeping somewhat and scaled back the holiday celebrations and festivities. I allowed others to help me more even if they did perform tasks below my normal level of excellence - towels DO still dry people even if they are not folded to suit me! And I learned not to apologize so much when I couldn't go and do as I had in the past. I don't make promises I may not be able to keep. I TRY to have patience with those around me as they are NOT feeling this experience in the same way that I am nor are they having to balance their emotions quite so carefully as I have to do. I made myself a "getaway" place right on my front porch where I can meditate and take it easy when the house is quiet and no one is calling my name. I learned to hold a little in reserve for the predictable crises and aftermaths and not fret too much when things take three times as long to accomplish as before.

Have patience and remember to BREATHE!! It's amazing how much tension we build up in our upper bodies by simply holding our breath or breathing shallowly. Several times a day, take a few deep breaths like you REALLY mean it!! Pamper yourself regularly - you DESERVE it and have richly earned it. You have to take care of you first before you can do a good job of caring for anyone else. Remember that your husband is changing, just as my mom and many others have done. TRY not to hold it against him - he wouldn't have pulled that card if he had had warning... Try new things to amuse him that he never liked before - he WILL change some and stuff he may have hated most of his life, may be his delight in the time to come. Give yourself time to grieve along the way... the tears are important and like a nice rain, when you blow off some sadness and anger, it can be refreshing and uplifting even if only for a short time.

Lastly, find special friends with whom you can hang out and "talk the talk." They are hard to find in everyday life and many "friends" simply evaporate as our needs increase, but you've always got US - and we're here 24/7.

MANY blessings to you for your loving care and all the times you choose not to choke the ones you love!!

Hi Nell,
Glad you found us! You are not drowning, you are just too tired to save yourself!
I agree with BG. You need to get yourself to float instead of being pulled down.

I am also glad to hear that you have excellent medical resources in your area. I'm sorry your husband has received this diagnosis. It's devastating news.

You will get through this! One day at a time. Hang in there!

Here ya go Nell! Welcome in glad you found us.
Sounds like in the nick of time too
Wow you gotta plateful there.
Mind if I say whos more important here than anyone else in this journey?

YOU Thats right you heard me correct, its not H (although he does need your support) its not your mom (although she needs some help it sounds like) Its you! Find your center take some deep cleansing breaths and holler out "STOP! hold it right there Im not your babysitter Im not your caretaker Im not your nurse, right now I need to re energize myself!"
Yell that as long and as loudly as you want till they all get the message.
Since your kids have taken to using their mom as a babysitter ask them to step up for a few days and take care of their dad while you take care of you.
Then sit back and think what H needs what mom needs and what your business needs to get by for a moment.
Nevermind the children tell them to find themselves daycare you have enough on your plate.
If they wanted children then they need to be prepared for what comes with that path. Sorry I dont mean to be so blunt about that but I get real tired of hearing grandparents get used like this when theres something like this happening.
It is not your responsibility to care for them its their parents.
As for your siblings...well thats something quite a few of us have experienced here.

Nell, welcome to ECO. I can understand why you feel as if you are drowning. I don't have nearly that much on me at this moment, and I still feel overwhelmed. Easter weekend was hard for us, but we are passing that by.

Once we get passed the howdy do's. I need to tell you, learning to say "no" pretty near saved my life. I am here for Mom, (I didn't have kids, scared to, cystic fibrosis seems to run in our family). Even so, 2 years ago, that was my newyears resolution....


setting limits, leaning to say "no". It is different for everyone. But it is OK to say no . I admit, it is still hard to do, but with practice, It is getting better.


Nell, it is nice to meet you. Thanks for stopping by. Hope to talk to you soon...