It's been awhile since I first posted on this board - back in July / August. Unbelieveable downturn. In a nut shell: (search my name for my first messages if you want details)

* May 2005 - Mom was living on her own in her condo. We got meals on wheels, home health aide to help with cleaning, and a life line. Her brother passed away and it was very traumatic for her - she became extremely depressed.

* June 2005 - We got companions to be with her during the day - to walk with her to church and stores so she didn't fall. She had the shuffling gait at this time and began walking with a cane. Mom was a dancer, a swimmer, a bike rider, a walker - for her to have to shuffle was devastating. My sister did her food shopping. I started to take care of her finances. The doctor tried her on Aricept - which made her conditions worse. She was calling me constantly and asking me the same questions over and over.

* July 2005 - After her falling asleep and living prunes on the stove and the fire dept. visiting her condo we knew she could no longer live alone. We moved her to an assisted liv. facility in the neighborhood - not dementia unit - more independant. She enjoyed that place for 3 months.

* October 2005 - She was in near hysterics. Crying constantly. See my deceased father. Thought people were out to get her. Threatening to run away - she packed her bags. She wanted to die. We got scared and called her Psychiatrist and he suggested her going to a hospital to be observed (BAD MOVE - we SHOULD have just moved her into another ALF w/ a Dementia unit).

* November 16, 2005 - After 3 weeks in the hospital for observation and to receive a number of tests and was given 3 different new meds (she was taken off some others, others were kept on) The 3 new ones were Risperadone, Remiron, and Razadyne. She was diagnosed with Vascular Dementia caused by mini strokes or Benswingers Disease. Mom left the hospital to move into a ALF w/ dementia unit. She WALKED into this hospital but had to leave in a WHEELCHAIR. We were told it was temporary. She hasn't walked since...

* November 24, 2005 - After a week at the ALF I arrived to p/u my mother for Thanksgiving Dinner. Found her in the wheelchair - slumped over, drooling, limbs all rigid. The nurses never called me to tell me this change. She was like this for over 24 hours. We immediately brought her to the hospital (I thought she had a stroke). They took her off all the drugs. The discharge notes were not very conclusive. But now I'm thinking she may have been victim to neuroleptic malignant syndrome...

* November 30, 2005 - Moved into a NH for rehab. We were hoping she'd get better to move to the ALF - no luck. She will now stay at the NH for good. She's still in a wheelchair, unable to walk. She is constantly moving her right side. Leg up, down, up, down. She knows who we are. She can't have a conversation. Only yes, no answers.

* This week - went to the neurologist and his latest diagnosis is either cerebral vasculitis (b/c of the rapidity) or lewy body dementia (this was what I thought - did a lot of research and it was the only disease she had all the symptoms)

She's in the hospital now - she'll be having a brain biopsy (the only way to determine if she has this treatable cerebral vasculitis) tomorrow (Monday, 2/6) I'm a nervous wreck - but would feel more guilty if after the fact we find that she had a treatable disease...

I'll post the results... Maybe my information will help some of you... Victoria

quote:

that we put her through that biopsy in vain

Tory, you made the correct decision so that now you have a good diagnosis. The news isn't what you would have liked to hear, but it settles the question. I'm so sorry that things did not go the way you'd hoped...

I suspect you are very sad at the news you received... Most of the afflictions of elders are not curable... they are treatable and there is much we can do to make our loved ones comfortable.

Please keep us updated on your mom's condition and know that when things feel terrible, you have friends here who "walk the walk" and understand what you are going through.
Good luck and bless you for your kindness and loving care!

Biopsy Results:

* Mom does NOT have anything treatable (unfortunately). No inflammation. No cerebral vasculitis.
* Mom has Diffuse Lewy Body Dementia http://www.postgradmed.com/issues/2003/05_03/stewart2.htm
* Mom also has amyloid angiopathy http://www.healthatoz.com/healthatoz/Atoz/ency/cerebral_amyloid_angiopathy.jsp

I'm sad that she does not have anything treatable - that we put her through that biopsy in vain.. But now that we have a name - we can treat some of her symptoms (as soon as she regains herself from the biopsy)

I visited Monday night and she said my name - that made me happy... She was awake for most of my visit... She ate 2 containers of ice cream. At this time we'll make mom comfortable and treat some of the symptoms of LBD (as soon as she regains herself from the biopsy) so that she can have the best life that she can...

I hope this information helps...

Thank you...

Mom is back in the NH. She is still mostly sleeping, but since yesterday has opened her eyes and responded to questions and ate some food. She asked me what was happening - I told her she had a test, but there will be no more tests...

Now that she's back at the NH, I've come to the decision to stop trying to save her, but just to love her the way she is. We don't have the results of the biopsy yet - but regardless I just want to make her comfortable again and love her for who she is every moment of every day - for as long as she's with us.

I'll post the results - maybe it'll help you all... Victoria

Tory, my prayers are with you and your mom.

It is hard not to second guess ourselves after we make decisions about those we care for, gosh I know I have. But you acted on your mom’s behalf with an absolute love for her, and that is what matters!

My father had a brain biopsy at age 85. He came through the biopsy very well. If your mom was put on anti-seizure meds such as Zonegran and Trileptal they will make her sleepy and fatigued, this is a common side effect, and this will go away. It may take a week, though. If your mom is also taking medication for swelling, is she on steroids (decadron or prednisone)? They will help with swelling and inflammation.

My mother was diagnosed with Dementia with Lewy Bodies based upon her symptoms. My Dad was her primary caregiver. When my father started showing signs of dementia this past summer, especially a lack of control of emotions, I wanted to intervene in July, but was persuaded by my brother not to...My dad had a cancerous brain tumor, and he died November 4th, two months after the diagnosis was made on September 7th. I know how you feel about wishes for things done or not done...

Sending positive vibes your way~ I am thinking of you.

~Karen

Awwww, Tory!! Stuff like this kicks elderly folks like a mule who DON'T have dementia, let alone the folks who do!!! It is so hard seeing them disoriented and in pain... but most of the time, it passes. You have to take the steps you think are important for her care and sometimes ya DO wonder if it's worth it, but you need to know what's happening with her as definitively as possible so you can know what you are up against. It's hard to cope with what we do not know about...

Hang in there and keep us posted, please!! Give your mom a hug from me and one for you, too!!

Actually it's been 3 overnights...

Mom survived the biopsy, the recover room and two overnights as of today. She was groggy that first day but ate 2 bowls of chocolate ice cream with whipped cream.

Then she was given medication to prevent seizures and swelling and since then been out of it. Sleeping, not able to open her eyes, not able to talk at all... I'm thinking the drugs and hoping she gets through this to get back to the NH and back to where she was.

I'm regretting this biopsy now. Of course... We won't get results for another 3 days... I hate seeing her suffer...

We did this to hopefully find a treatable disease - but now I wish I just accepted things as they were and made her comfortable. I hope that we can get her back...

Your mother's illness sounds like my father's. He was diagnosed in Sept. 1999 and passed away in March of 02. According to specialists I have spoken with their best guess is Diffuse Lewy Bodies. His brother is now suffering from the same thing. Both were diagnosed in their late 60's.

Moms Buddy, the phare we may do too little or too much, a balancing act.Rings true.At least we are doing something, right!

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but would feel more guilty if after the fact we find that she had a treatable disease...

Wow, Tory - whatta unamusing roller coaster ride you and your mom have been on! PLEASE do not start blaming yourself... although we all have to take responsibility for our own health issues and for those for whom we care, we are NOT expected to be doctors. Even if we were, these diseases are very difficult to diagnose... often they are treated by process of elimination.

We ALL can tell war stories of things we would have done differently in retrospect, if only we had realized... I dunno about you, but when I took on this task of caregiving for mom, it did NOT come with an instruction manual nor a crystal ball - two things that would make ALL of this a WHOLE lot easier!!

Sounds to me like you are pretty on-the-ball, both with care and research. Trouble is, these diseases are more relentless than we are!! By the time we realize there is a problem and take the steps to diagnose, define and treat the problem, three more have sprung up!! Sometimes we DO get lucky - a med change can do wonders when one stops working correctly or new symptoms arise. But mostly, it's a one-step forward and two steps back kinda deal... We are helping people through a terminal process. We WILL lose the fight with these diseases at the end. The trick is to do what we can to fight for their quality of life and dignity and make a peace with the rest. Because, at present, there is no hope of CURING ("treatable" does not mean curable or that one could return to their former abilities) our loved ones, our approach becomes a balancing act of doing too much, doing too little... not a very comfortable space to inhabit!!

Your struggle is so brave and sharing your experiences here hoping to help others avoid pitfalls & pain is so kind!
Best of luck to you - please keep us updated on how things are going with both you and your mom. Bless both of you!