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 Emotional turmoil 
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Thanks Melinda and Robin. I had read the well written article by Geri Hall. It was a real "eye opener." I do hope it does not come to that point but am now prepared to put him in a facility if or when that time should come. I no longer make promises I may not be able to keep.

I have to smile to myself when I read some of the other stories about "affairs" as it makes me realize that this is just a dillusional moment with my LO. However, hearing it from the others makes it more understandable.

Had a most productive appointment with the neurologist today. He is going to change some of the medications one at a time so we know which ones will work best for my LOs particular case. Told him about joining this site and he was pleased. He feels we learn so much from each other relative to how others handle different situations. He also suggested I join the Parkinsons Assoc. and even the Alzheiemrs Assoc. as even though the Lewy Body dementia disease is different they are intertwined and much can be learned from other caregivers. I reported the recent events we are experiencing and all are a part of the Lewy Body World we are in. Very typical. We are fortunate to have such a wonderful neurologist. He agrees I need to get professional help in dealing with the stress of being a full time caregiver.

LO had a good day today so the relief was welcome.

Thanks again
Dianne

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Dianne C.


Thu Dec 04, 2008 1:55 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Dianne,
Sounds like you had a great appointment! I do hope you'll follow up with your own MD. I agree with the suggestion about joining PD and AD support groups. I go to as many group meetings as I can; you never know what useful tip you'll pick up!
Robin


Thu Dec 04, 2008 2:09 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Robin,

Meeting with neurologist today was VERY productive. He said almost verbatum what you just said. Reach out to as many groups as possible and pick up on all the little tidbits those who have gone before you have to offer.

Thanks for all of your support.

Dianne

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Dianne C.


Thu Dec 04, 2008 2:59 am
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Dianne,
I am glad your appointment went so well and he sounds like a well informed Dr, telling you to reach out to others, nothing better than the experience of others that experienced same issues before us. You need to take time for you too, that is just as important as taking care of your LO. Are you a member of the Caringspouses support group? Also if people offer to help in some way don't be shy in excepting their help either.


Thu Dec 04, 2008 3:43 pm

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Irene,

We are so fortunate to have this very high profile and wonderful neurologist. He has been invaluable to us. He is very involved in brain disorders, parkinsons, als, ms, etc. and many organizations. He also feels the "tried and true" methods other caregivers have experienced is invaluable. The sharing of these tidbits of knowledge are important.

And thanks to you I joined the LBD org. Prior to my initial email to you when we were having a crisis here, I had read the postings but had not joined. I thank you for urging me to join in. I am not a member of the Caringspouses Support Group but will join this week.

This is such a different position for me. I was always the strong, businesswoman and now find myself so vulnerable. I feel as though I am coming back though. Its just getting through those tough periods...the down part of the roller coaster ride of LBD.

I have joined a couple of ladies groups to "get out" a bit. My LO gets very jealous of the time I spend away from him and I do not like to leave him alone for long. I do have a neighbor who helps keep an eye on him. Dr. says this jealousy, delusions, etc. are a part of the disease but is adjusting his medications to help deal with it.

Thanks again
Dianne

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Dianne C.


Thu Dec 04, 2008 11:50 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Is the Caringspouses support group the one on Yahoo?

Thanks

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Dianne C.


Thu Jan 01, 2009 10:22 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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DianneC -
yes
Robin


Fri Jan 02, 2009 6:11 am
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Joined: Sat Mar 21, 2009 1:54 am
Posts: 7
Location: Oregon
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Dianne,

I know this was posted a few months ago. However, I am new on this site and when I came across your story I couldn't believe what I was reading. I have experienced the same story with my husband. I have struggled for the past five years wondering if my husband was manipulating or faking his symptoms. I also couldn't understand how he could turn it on and off if he was truly sick.

My husband was diagnosed with PD 5 years ago and has progressed his way into a nursing home. Since he has been out of our home for the past two months, his delusional and paranoid behavior is now seen by family members, nurses and sometimes the doctors.

It's extremely difficult trying to help someone you love who is constantly attacking and accusing you of things that aren't true. I know how you feel; I have lived it every day for the past five and a half years.

I am so sorry about your mother. I will be praying for you.

Patty


Sun Mar 29, 2009 4:17 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Patty,

So glad you joined this site and hope it is as valuable to you as it has been to me. We all welcome you here...jump in and post anytime. :) Great to have you here.

Its super that you are reading the "old posts." Many of us have experienced so many of the same things so while LBD is patient specific lots of things are similar or intertwined. Actually, reading your post prompted me to go back and reread some of my own. I sure was in the depths of dispair when I joined in...I clearly remember those horrible days and nights. Many of the antics remain the same, some have changed to other things but all in all we try to manage as well as possible. I have learned to seek and accept as much help as possible, continue to educate myself about the disease and try to give my LO as much patience and understanding as possible. Yes, I loose it now and then but I have learned to accept that too. ..I am only human.

You have dealt with this for 5 years! No need to tell you what a strain/stress this is for the caregiver. Your struggle with this awful disease is understood and appreciated. You are doing the best you can and that is all any of us can do.

So glad you joined in. Looking forward to more of your posts. :)

Dianne

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Dianne C.


Sun Mar 29, 2009 12:15 pm
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Joined: Sat Mar 21, 2009 1:54 am
Posts: 7
Location: Oregon
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Thank you Dianne,

Five years is when he was diagnosed with PD. We still don't have a LBD diagnosis, even though all the symptoms that I have seen have pointed in that direction from the beginning.

You had mentioned in an earlier post that your husband has a great neuro. I see you live in Nevada. What part of Nevada do you live? We are from Southern Oregon and I really want to get my husband to a neurologist that is familiar with this disease. Can I get the name of the doctor and where he is located?

Thank you so much. It has really helped reading these posts.

Patty


Mon Mar 30, 2009 3:19 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Patty,
If you mention a specific city, maybe I can send you a referral, I know there is one in Boise ID but again that's a big area to not know the location other than southern Oregon.

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Irene Selak


Mon Mar 30, 2009 8:30 am
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