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 Doctors and the caregiver 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Post Doctors and the caregiver
I'd like to ask if LBDA would consider adding another forum that focuses on non-medical topics that are of critical interest or importance to members. This forum seemed the closest to the topic I'm posting on, but is really off-topic.

This may be more of a grouse than a question. Of late, my own health (mental and physical) is starting to succumb to Lewyland. I'm tired, overworked, scared, scattered, and am isolating myself. Jerome and I both see the same GP, and have for years. It astounds me that we will go in for an appointment for Jerome and the doctor (who is quite personable) doesn't even remark that I'm looking like a scarecrow and probably should make an appointment for myself -- nor does he even inquire if I'm doing okay. Forget Jerome's other specialists -- I could walk in looking cadaverous and they would never mention or even connect my physical condition to the stress of loving and caring for someone with LBD.

Am I asking too much to suggest that physicians treating an LBD-er should at least glance at the caregiver for any obvious signs of severe strain? After all, Jerome and I are a team in handling Lewy, and as I'm the brains of the team (by default!) shouldn't a doctor, in the interest of their primary patient, give a passing thought to whether the caregiver is "healthy" enough to manage the patient's condition? Oh, well ...

Thanks for letting me grouse! And yes, I am taking steps to take better care of myself ;-)

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Renata (and Jerome-in-Heaven)


Thu Sep 27, 2007 5:35 pm
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Post Re: Doctors and the caregiver
[quote="raffcons"]I'd like to ask if LBDA would consider adding another forum that focuses on non-medical topics that are of critical interest or importance to members.

It astounds me that we will go in for an appointment for Jerome and the doctor (who is quite personable) doesn't even remark that I'm looking like a scarecrow and probably should make an appointment for myself -- nor does he even inquire if I'm doing okay. quote]

Renata,
I will pass your suggestion along as to another forum, are you hooked up with any support groups online?

As to the Doctor caring well I think they just lose sight of whats going on as a whole, they treat only what"s at hand. Right after Jim died I was dealing with my Mother with 2 Fractured hips and she was sent to a ALF to soon after rehab and there were issues and I took her back to the Doctor and questioned why she was released and his answer to me was "I am not a Social worker, I am a Doctor".
The same thing goes on with LBD, when the DX comes they don't sit and tell you what will happen along the Lewy Path! Our Doctor told me to go home and research it on the internet!


Thu Sep 27, 2007 6:07 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Renata,
Interesting you should mention this. Dr. Langston, the head of The Parkinson's Institute, just told an audience this afternoon that MDs at their clinic now regularly consider the health of the caregiver as well because they believe that giving good healthcare to the patient means including the caregiver (and other family members) in that healthcare. He said that MDs ask patients for permission to include the caregiver in at least part of the appt so that their feelings and health can be assessed. Quite enlightened compared to your physician.
Robin


Thu Sep 27, 2007 6:46 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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Wow -- am I ever impressed with The Parkinson's Institute!

I've visited the yahoo.groups forum for caregiver spouses and, frankly, the sheer volume of messages was overwhelming and the threads very difficult to track. I find the LBDA forums practical, helpful, friendly, concisely organized and on point for most of what I "need."

But I do find that other questions sometimes come to mind and there is no appropriate LBDA forum for those non-medical/non-behavioral questinos and topics.

Thanks for looking into that for us, Irene!

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Renata (and Jerome-in-Heaven)


Thu Sep 27, 2007 7:41 pm
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Joined: Wed May 30, 2007 12:09 pm
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Lately I haven't been posting but reading all written here. So many times in the last 2 weeks I wanted to start a new subject called " what about me".

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Last edited by number1daughter on Sat Sep 29, 2007 11:50 pm, edited 1 time in total.



Thu Sep 27, 2007 9:41 pm
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Joined: Sun Sep 23, 2007 6:35 am
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Location: Victoria, Australia
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Perhaps a "chat" line could be set up, there is a site in Australia for Dementia www.dementianet.com.au that has a chat site so that you can talk to people sharing the same problems. I have used it twice now and chatted to 2 lovely ladies going through the same ordeal of dementia with their LO it has been very therapeutic.


Thu Sep 27, 2007 11:31 pm
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Joined: Wed May 30, 2007 12:09 pm
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yvonne,

Thanks for the url. I went there and it is very interesting. I will return there and maybe chat....

Thanks again

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Fri Sep 28, 2007 12:19 am
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