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 Reaching out from Vancouver, Canada 
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Joined: Sun Feb 05, 2012 1:41 pm
Posts: 8
Post Reaching out from Vancouver, Canada
Hello all,

My name is Angela and I've been caring for my 89 year old mother since 2007. At 84, she was healthy, out-going, active (swimming, square-dancing, painting) living alone, loves gardening and drove everywhere by herself.

When she became catatonic in Dec. 2006, she was rushed to the hospital where she was diagnosed with depression and paranoia. She was put on Olanzapine which made her drool, face was mask-like with no expressions, and walked like a card board Frankenstein. There was a major fallout among our 4 siblings over the use of anti-psychotics. In July 2007, the doctors took her off Olanzapine and she has been on Zoloft ever since.

After being hospitalized for 9 weeks, she moved into a five-star assisted living where she was the only Chinese resident. She attended daily exercise classes and went on bus trips. She missed Chinese food and despite our best efforts (restaurants, home-cooked meals), her weight dropped from 135 lbs in 2007 to 98 lbs when she moved into a nursing home in Feb. 2011. She lost 10 lbs the first 3 months and now weighs 88 lbs. Her greatest fear is to be abandoned so I visited her every day until recently when I had to back off to take care of my own health.

My biggest challenge is deciding what is best for her? She suffers from severe anxiety, hallucinations and delusion usually before bedtime, begging to leave the nursing home. Sadly it is not an option.

When I try to calm and soothe her, she spits at me saying I am not her daughter. Later she would tell me, there was a girl who looked exactly like me and I should call the police. Apparently she cries out in her sleep almost every other night from traumas during the Japanese occupation of Hong Kong in WWII.

She is very sensitive to any medication, even Ativan. Any change in meds upsets her equilibrium. We don't want to experiment with these powerful drugs (black box warning may cause death in patients with dementia) and may sometimes worsen the symptoms. It's heart breaking to see her slowly deteriorate. I now have 4 care-aides 7 days a week to help feed her which can take up to 2 hours.

Caring for my mother has been my whole life the past 5 years. I feel helpless, hopeless and physically and emotionally drained. Each day is getting harder for me to visit my mother. Whenever she sees me, she wants to go home. One night, she begged me "Please don't let me die here!" Now I visit her every other day or 2-3 days 'cause I can't bear to see her unhappy and I'm unable to care for her at home.

Friends have suggested I move to a bigger apartment and hire full time help so she can enjoy her last days in a home environment. This would involve finding an apartment, furnishing it, hiring reliable help, shopping and cooking 3 meals a day with no back-up. Two of my siblings would strongly oppose it as they feel my mother at least has a baseline of care in a nursing home. Besides, once we take her out of the health care system, it would be hard to get back in. It a major emotional burden knowing I'm unable to fulfill her wish. I just hope I won't live to regret it.


Tue Feb 07, 2012 2:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Reaching out from Vancouver, Canada
Angela, welcome to the forum. So many issues facing you! Regarding your mother thinking you are someone else, this is Capgras Syndrome, quite common in LBD and my husband had it off and on for several years, believing me to be an identical impostor.

Although it does have a 'black box warning', Seroquel [quetiapine] has been a godsend for my husband in reducing the agitation, anxiety and hallucinations that he experiences, especially in the evenings. Your mother's neurologist might recommend it--it is widely and successfully used in LBD.

Your mother may very well want to go 'home' even if she were at home. Many of us experienced this frustrating phenomenon. Please don't feel guilty about placement as it is probably the best solution. It is surprising that a facility in Vancouver would not have Asian food available. Would take-out be an option for a few meals a week?

LBD is a heartbreaking disease and we are all traumatized by it. Seeing our loved ones miserable and delusional every day makes us feel so helpless. God bless you for caring for your mother and I hope you find support and help on this forum. Hugs!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Feb 07, 2012 3:35 pm
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Joined: Sun Feb 05, 2012 1:41 pm
Posts: 8
Post Re: Reaching out from Vancouver, Canada
Thank you Mockturtle for your compassionate advice and support. I know Seroquil is widely used in nursing homes. My mother was given a mild sedative, Ativan to help alleviate her anxiety and she became aggressive waving her walking stick. The nurse strapped her to a chair which further traumatized her. Last July, a geriatric psychiatrist even recommended ECT which our family declined as our mother is already so frail.

I appreciate your last post about lithium too. God bless you.


Tue Feb 07, 2012 3:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: Reaching out from Vancouver, Canada
Welcome! You are going through what many of us have or are experiencing. Your mom would probably NOT want your health to suffer because of the burden of caregiving, would she? So, yes, taking care of yourself is just as important as taking care of her. You are younger and have a lot of years ahead of you and you don't want to get your own healthy compromised! Who's going to take care of you if/when you get sick from the stress of it all?
It is really hard to balance your own life with the life of caregiving, but if cutting your visits back helps you, then ultimately it will help her because you can't help her if you are too sick and stressed. Is she aware of time anyway? Sometimes my dad thought I hadn't seen him in months and it had been minutes. Once he thought my 21 year old son had been "living down the hall for a week" in the ALF but hadn't come in to visit him. His sense of time was really screwed up for about his last year, so he didn't necessarily know when or if people were visiting. He'd also think it was dinner time at 9 AM some days.
Do take care of you and let the facility she is in do the burden of the CGing as much as you can. Hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Feb 07, 2012 4:07 pm
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Joined: Sun Feb 05, 2012 1:41 pm
Posts: 8
Post Re: Reaching out from Vancouver, Canada
Hi Lynn,

Thanks for sharing and your kind encouragement. I was brought up with traditional Chinese values and the expectation that we would take care of our parents in their dotage. Ever since I was a little girl, I had promised my mom she'll always have a room in my home when she grew old. Now single at 66, I live in a 600 sq. ft. one bedroom apartment. I don't cook; and have been a career woman all my life. I know how to push papers, manage people, but not practical day-to-day stuff like care-giving.

Both my sister and I are burnt out. She is 6 years younger and does most of the cooking. I manage the finances, hire and fire care-aides, take my mom to the doctors. Every time I exert myself, like taking my mom and care-aide yesterday to the podiatrist, I end up with a sore throat. I usually need to rest the next day or 2 to recover.

I'm trying to get my health back so I can continue to care for my mom. Started attending church again after 30 years! Can't do this anymore without God's help.


Tue Feb 07, 2012 5:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Reaching out from Vancouver, Canada
Peony88 wrote:
Thank you Mockturtle for your compassionate advice and support. I know Seroquil is widely used in nursing homes. My mother was given a mild sedative, Ativan to help alleviate her anxiety and she became aggressive waving her walking stick. The nurse strapped her to a chair which further traumatized her. Last July, a geriatric psychiatrist even recommended ECT which our family declined as our mother is already so frail.

I appreciate your last post about lithium too. God bless you.


Ativan is on the 'no' list for LBD but Seroquel is usually well tolerated if started in very small doses. PS: Take care of yourself!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Feb 07, 2012 5:59 pm
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Joined: Sun Feb 05, 2012 1:41 pm
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Post Re: Reaching out from Vancouver, Canada
Thanks Mockturtle :-) A psychiatrist friend and her doctor husband advocated for 3 years to have her mother taken off Seroquel and finally succeeded. Her mother is now no better or worse. Apparently it is very difficult to determine if my mother's hallucinations are caused by her paranoia or her dementia? If the former, then Seroquel would be effective. If the latter, it could worsen her dementia symptoms. At least according to my psychiatrist friend who treats a lot of seniors.


Tue Feb 07, 2012 8:16 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Reaching out from Vancouver, Canada
Peony88,

Sorry you've had to join us here.

Ativan is on some people's "no" list for LBD but it's not on everyone's "no" list. (It's not on the LBDA's "no" list.) Many do seem to tolerate Ativan (lorazepam). It's good that you know that your mother can't tolerate it!

Never heard of the dichotomy of hallucinations being caused by paranoia or dementia. In LBD, can't we assume that all the hallucinations are caused by the LBD pathology in the brain? Many, many with LBD who do not have delusions do have hallucinations that are resolved through Seroquel.

Robin


Tue Feb 07, 2012 8:53 pm
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Joined: Sun Feb 05, 2012 1:41 pm
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Post Re: Reaching out from Vancouver, Canada
Thanks Robin. My psychiatrist friend merely shared her views based on her experience in treating patients with dementia. I have no medical background or knowledge to verify it.

Below is an article she gave me which you and others might find interesting:

"Psychiatric Complications of Dementia" by Ravi Bhat, MD and Kenneth Rockwood, MD published in July 2011 in the Canadian Journal of Psychiatry, Vol. 56, No. 7.

Warm regards to all.


Wed Feb 08, 2012 12:11 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Reaching out from Vancouver, Canada
Thanks for the citation. I'll check it out!

One of the US's LBD experts, Dr. Brad Boeve, wrote a terrific paper offering a treatment regimen for various LBD symptoms. You can find his "Continuum" paper on the lbda.org website by doing a search. It offers expert medical insight into the treatment of hallucinations and delusions, for example. It's tough going the first read-through but you'll get the hang of it quickly (if you are already reading other medical journal articles!).


Wed Feb 08, 2012 12:40 am
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Joined: Sun Feb 05, 2012 1:41 pm
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Post Re: Reaching out from Vancouver, Canada
Thanks Robin. Very helpful articles, especially the one about care-giver's burden. I sent the link to my mother's new GP to help her better understand the disease, and hopefully provide the support and care my mother needs.

Greatly appreciate your help and support.


Wed Feb 08, 2012 1:11 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: Reaching out from Vancouver, Canada
Your situation sounds so hard! I hope you'll be able to get help not only for your mother but also for your own health.

To second Robin on Seroquel: my mother has had very troubling delusions and some hallucinations (people falling off the roof, and one of us getting kidnapped or carjacked nearly every week, plus the building catching on fire). I was concerned about trying any of the antipsychotics but our neurologist, who is a very senior and noted guy and really smart (also a colleague of mine) felt it would help. I found that an extremely low dose - 12.5 mg at bedtime - really helped, almost immediately, with no particular side effects except that she slept more, which is not so bad. We have had to increase to 12.5 mg twice a day, but that has eliminated the problems. Charlie very kindly refrained from saying "I told you so!"

People vary so much - but it might be worth a short trial. I do hope you find something that helps. You are in a tough situation, and it's very hard to accept the limitations of what you can and cannot do to fix the problem.

Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Feb 10, 2012 2:18 am
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Joined: Sun Feb 05, 2012 1:41 pm
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Post Re: Reaching out from Vancouver, Canada
Thanks Laurel. I asked my mother's GP and my psychiatrist friend again this week about possible meds for my mom in the evenings to help calm her anxiety and hallucinations.

Independently both advised against any new meds at this time.

I appreciate your thoughts nonetheless.


Sat Feb 11, 2012 9:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Reaching out from Vancouver, Canada
Angela,
Welcome to the LBDA forums also, I hope it can be a place that is helpful to you !

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Irene Selak


Tue Feb 28, 2012 4:58 pm
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