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Joined: Fri Feb 02, 2007 2:48 pm
Posts: 9
Location: Windsor, MA
Post New member
My name is Brenda. My mother(72), I believe has LBD. The doctors here have not made that official diagnosis yet but all signs points toward that. I have been reding your forum for months now and have not been able to join until now. Just reading the forums has been so helpful. My mother moved in with my family Oct 11, 2006 because she was unable to take care of herself anymore. I cannot even believe the emotional rollercoaster that I have been riding, it seems like a dream. It seems like my life has been frozen in time but the world is functioning and going on with life around me. I already miss parts of my mother so much, she was always my best friend and biggest support before these symptoms took over. She is early onset and physically pretty good still in comparsion to many others in the forum. I can't believe my journey has just begun. No one understands this disease around me, not even the doctors. It is so isolating and I am trying to function in the real world that keeps marching on. I have a teenage daughter and 11 yr old son who have busy lives. We own our business in which I do the book work and I can't even think straight. This has to be a dream, a nightmare. Sorry to go on and on, it feels good to vent. Thank you all for allowing others to read the forums, it has helped me and educated me.

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Brenda St. Pierre


Sat Feb 03, 2007 2:55 pm
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Dear Brenda,
I just signed up two days ago, have been living this since at least 2003, with my Dearest Husband, I 50, he 52 in March. He has changed so much, and no one, not even my very lucid Mother even believes (sees). He was dx'd "officially" in the Fall of '05. It's been so hard, but my feelings are like yours, like everyone's here, though I'm learning each LBD patient has a difft. course. You have my Support, Understanding. I am so sorry about your Mother. You will receive so much help here.
Love Always, WifeLiz


Sat Feb 03, 2007 10:47 pm
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Dear Brenda,
I am so glad you have decided to join us and welcome, I am also glad that you have been able to get information here, Sounds like you are a busy lady with a young family and a business to keep up with and yet you have found the time to care for your Mother, I applaude you but I must warn you, you are wearing several different hats in your day and I fear you will have to make time for you if not you will burn out fast, even more so with this disease because as you already stated other people don't really see it the way a caregiver see's it, so now you have another job of getting other people to see it or should I say understand it, this all spells stress to me and I am concerned, if I were you I would copy information off and bring it to the Dr's but honestly they will only treat the medical end of it not the emotional end, so take a deep breath and count each day as a blessing .


Sat Feb 03, 2007 11:53 pm

Joined: Sat Feb 03, 2007 12:32 am
Posts: 4
Location: Melbourne
Post No sin to ask for HELP ...
Dear Brenda

Knowing that my uncle Jim has only JUST been properly diagnosed, I can only agree with Irene, and strongly recommend you seek assistance. From what I know of my uncle's history in recent years, he never fully recovered from heart bypass surgery some years ago, and my aunt did her absolute best to continue to care for him at home until it obviously just became far too much. He was diagnosed with depression last year in April, and the LEXAPRO prescribed made him much worse. Even in recent weeks he was prescribed RESPIRIDONE, a strong medicine, which also had very bad effects. You need to eductae your treating doctor, enlist the services of a competent neurologist for an examination of your loved husband, and accept that this illness is hard for the patient affected to adjust to, and very hard on (especially solo) caregivers. Just my 'tuppence worth', but I am astounded at the change in my uncle, only just diagnosed with this disease, which potentially has been developing for quite some time.

Good luck, give yourself a pat on the back, but get some help ....
Best Regards
Keith


Sun Feb 04, 2007 7:36 am
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Joined: Fri Feb 02, 2007 2:48 pm
Posts: 9
Location: Windsor, MA
Post 
Thank you for your replies. It is nice to know people have been and are going through similiar struggles. I arranged a respite weekend this coming weekend, my brother is going to oversee things with my mom and my husband is going to take care of things with the kids. I feel excited and guilty but I know it is best for everyone for me to recharge and allow myself some time to try to adjust and accept this. I immediately kicked into high gear to make all arrangements of having my mom move in with us, sell her home, etc. Thanks for taking the time to reply. Brenda

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Brenda St. Pierre


Mon Feb 05, 2007 3:23 am
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Post stress: good for you Brenda!
Dear Brenda,
First I want to clarify, whoops I meant my Husband was dx'd officially in Fall, '06.
That in itself, is just one of the things that has happened to me being isolated, sole caregiver, *and* my Husband insisting everything is a secret. I forget, I get unbelievable stress, even w/ antidepressant and anti anxiety meds I started last Fall.
(And weekly therapy)!
On top of this, I printed out what Irene so kindly suggested, but before sending (hoping to today), I was once again criticized by his and my Mothers for joining an "unnecessary" group. (His "showtime" abilities are incredible)
Anyway the isolation, stress came to a terrible peak, so to speak, when last night, alone, "w/o" my best friend, my Husband (who actually was there w/ me) to advise me, as he always has: in applying to a spouse caregivers group, somehow I must have mistated his dx of LBD w/ Parkinsonism, was politely turned down. I promptly fell to pieces, writing email after email to appeal for help or understanding, bothering others, now miserably embarrassed today...(At least my Husband wrote to all involved explaining this: he does come through now and again)

But this terrible faux pas plus of mine (grew up w/ Southern manners!) made me see how off the charts my stress, trying alone is: we even have someone come part of day, 4x week, but it is all under pretense of my weakness (true) from some things like arthritis: *NO* mention of the inexplicable, not normal things that happen w/ my Husband: we stay one side on condo, she the other, or we go to physician appts. Anywhere where he can function as he is, and even quite normally at times(!), but so she won't realize...
The stress may have lost me a Friend here, or respect of those whose help I need.

I just am not even sure how to go about getting time, respite situation. I am very much looking forward to an LBDA support meeting. That should help. He will not accept "Babysitters."

So great for you Brenda, congratulations! Irene is generous and wise. I'm so happy for you, hope I'll get creative, come up w/ something other than nails done or reflexology massage, when he waits!

Hope your time is nice; and it goes w/o saying that my heart goes out to you: To lose the insides of a Mother must be devastating. I never worried that my Mother, since early widowhood herself, was not nice, a good Friend. Now Except for Friends, I am so alone. I hope this whole process is as little painful as it can be for you.
Love Always, WifeLiz


Mon Feb 05, 2007 1:39 pm

Joined: Fri Feb 02, 2007 2:48 pm
Posts: 9
Location: Windsor, MA
Post 
Hi Liz,

Thanks for the reply. Sorry for your difficulties also. It is so hard not to get lost in them.
So far, this forum and finally decding to get away for thw eekdn have been the first things I have done to ask for help. I'm not good at that because I am used to giving help not receiving it.
If there is something I can do for you, please let me know.
Truly

_________________
Brenda St. Pierre


Tue Feb 06, 2007 1:55 pm
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Post Just enjoy yourself!
Dearest Brenda,
What a kind offer! Here's what you can do: take care of yourself (and I'm open to hints about how!) And enjoy your break, and come here for any/ all you need or can get, or to give...I was a "big time" giver before all this, less so now.

I wish I could join the recommended LBD Caring Spouses (Yahoo) Group: there was some mistake either I made applying, or that occured somehow, so I was first politely declined ("We take only LBD Spouses" I am!) Now I see I am a "pending" status.

We all here have (or have had) this tragic thing happening to someone we love dearly, and we all need to learn and to help. Just one more wish of mine would be to talk to Spouses: My Husband, disappearing (reappearing every now and then) was/ is my Best Friend. But I miss Him. It breaks my heart.

What can you do? Well you just heard me vent: pls forgive me!

Please just get what you need for yourself. Also, any LBDA support groups near you? There is one in my area, and My Husband is even invited (I am not sure that is a good idea). But I look forward to a Support System locally, and to getting back to giving, helping, maybe just a bit more than what I do everyday: Love my Husband, try to keep him in best shape possible, understand, be patient, say "It's the diseasse."

Have a great "break" Brenda! Thanks for the Friendship. I needed that! Oh yes: pls remember to ask me if you need anything!

Be Well.
Love Always, WifeLiz


Tue Feb 06, 2007 6:44 pm
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