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Joined: Fri Jan 09, 2009 5:53 pm
Posts: 3
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Both my parents are/were affected by dementia. My Dad passed away in September of 2008, he was diagnosed with Alzheimers. My Mom was mis-diagnosed with Parkinsons Disease in 2004 and was correctly(in my opinion) diagnosed with LBD in 2006. There are very few people in our area that have even heard of LBD, even those in the medical profession. I can't stand to see my Mom suffer and she is dependent on me for everything. I thought I might be able to utilize information from others that have been there to lessen Moms suffering. Sometimes, I am just at my wits end because I don't know what to do for her. She has now become incontinent at night and is having trouble walking.I have bought a walker with a seat for
her, but her house is not really condusive to using it. She has not been out of the house for
probably 6 weeks with the exception of 1 doctors appt. She just lays around on the couch most of the day and usually sleeps 12 hours @ night, however, this week, that has changed. I just need more information and I appreciate your site. Thanks, Mamas girl


Tue Jan 13, 2009 10:47 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Mamas girl,

Sorry to have to meet you under this circumstance but glad for you that you found and joined this site. The folks on this site are wonderful and will offer you invaluable information and support.

You have my deepest sympathy on the loss of your father. I lost my mom in October 2008 from complications of dementia and I miss her every day as I am sure you miss your dad.

Sad to hear about your moms LBD but encouraged that she has been properly diagnosed so she can get the correct medications. Its amazing how few people never heard of and know nothing of LBD including those in the medical profession.

The role of caregiver is one that is very trying and difficult. I too joined this site one day when I was so overwhelmed I didn't know where to turn. It was a real lifesaver. I have found the best way to deal with this terrible disease is to just take one day at a time...and when it gets to be too much...log on to this site and vent. It does help.

My LO has night incontinence too...and once in a while in the daytime. The "accidents" are becoming more frequent. I don't have an answer for that other than Depends...which my LO refuses to wear...or he will wear them one night and then refuse again for 2 weeks. Our bathroom is scrubbed over and over but I do think it is taking a tole on the tile and grout. I tried febreze air freshener and a few others but have not found a good solution for this. Perhaps others can give us some tips.

Good luck to you. You and your mom will be in my prayers.

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Dianne C.


Tue Jan 13, 2009 11:52 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Hello Mama's girl,
Welcome to the LBDA forums and I am glad that you have found us. I must first say, please except my condolences on your recent loss, to have one parent sick with dementia is hard but to have 2 is unreal. Do I understand you correctly that your Mom is living in her own home? Sounds to me like some services are needed if possible, LBD does present certain issues and one being the ever constant fluctuations, what might apply today might not tomorrow. Are you thinking of a possible doctor change for your Mother if so, maybe we can point you in the right direction, having a Doctor LBD savvy is almost a must with dealing with this. Have you gone to the LBDA website, lots of great information there.Day care might be helpful for your Mother also, it would maybe help her to do things rather sleep all day long.

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Irene Selak


Tue Jan 13, 2009 1:04 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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Mama's girl,

Have you considered moving your mother to a dementia care facility? You would still be in charge of her care but you'd be letting someone else do the dirty work, so to speak.

I hope you will consider donating your mother's brain upon death. Given your father also had dementia, it would be good to know exactly what disorder she has been dealing with.

Robin


Tue Jan 13, 2009 2:01 pm
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Joined: Fri Jan 09, 2009 5:53 pm
Posts: 3
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Hi Irene, Diann & Robin,
This has been very trying to say the least, I'm just glad that I am here to help them. Mom is still in her own home and she wants to stay there, so I will do everything in my power to respect her wishes. I have 2 caregivers
through an agency that stay with Mom, 1 stays Mon - Thurs and the other
stays Fri-Sun from 9am to 6pm. I have 3 daughters, 2 locally that help
from 6 until bedtime which is usually around 7-730 and I spend the nights
with Mom. I have 2 sisters, the younger of them is 44 and autistic, she was also badly burned on Oct. 29th and we have spent a lot of time in Augusta but she is now home and we were taking her back every week but last trip, they scheduled her appt for 2 weeks. I have thought about day care, but I honestly don't think she has the energy. Is this normal with Most LBD patients or has Mom depleted her energy by just lying around? I am certainly open to suggestions. I have entertained the thought of donating Moms brain to Emory University where her neurologist, Dr Alan Freeman practices. It is a little scary to me because my maternal Grandfather was diagnosed with Parkinsons, but then showed signs of Alzheimers so I would really like to know exactly what is
going on with Mom, and with my Dad having Alzheimers, and my family always said that his Grandmother was"crazy as a bedbug", so I wonder what her problem really was....I just wonder how my brain is.....I take B12 on a regular basis and try to eat well and sleep well, but sometimes, it just doesn't happen.

irene selak wrote:
Hello Mama's girl,
Welcome to the LBDA forums and I am glad that you have found us. I must first say, please except my condolences on your recent loss, to have one parent sick with dementia is hard but to have 2 is unreal. Do I understand you correctly that your Mom is living in her own home? Sounds to me like some services are needed if possible, LBD does present certain issues and one being the ever constant fluctuations, what might apply today might not tomorrow. Are you thinking of a possible doctor change for your Mother if so, maybe we can point you in the right direction, having a Doctor LBD savvy is almost a must with dealing with this. Have you gone to the LBDA website, lots of great information there.Day care might be helpful for your Mother also, it would maybe help her to do things rather sleep all day long.


Tue Jan 13, 2009 4:28 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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Mama's girl,

Yes, fatigue is a big problem in PD and PD-related disorders such as LBD. You can try to treat this pharmacologically with meds such as Provigil (modafinil).

Another of our members here donated brain tissue to Emory University, and found them very good to work with. I believe it took 6 months or so for the neuropathology report to be returned....which is a long time but the tissue procurement fees were all handled by Emory. It's the only way to know what the true diagnosis is. Of course we don't know if your father really had AD or not. Another person whom I helped with brain donation to Mayo Jax told me today that his father's autopsy report showed he had AD, not LBD. It's shocking to me how bad the MDs are at diagnosing LBD!

Take care,
Robin


Tue Jan 13, 2009 6:46 pm
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