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Anyone with Vascular Dementia - or Binswanger experience?
Posted: Monday, August 12, 2019 11:31 PM
Joined: 8/12/2019
Posts: 4

Hello, I've searched and found your forums when trying to educate myself about Binswanger disease.  I've found a lot of great info on here from individuals who've dealt with it but was wondering if anyone has any updates on their loved one.  Most of the posts I've found were quite old.  

My LO has vascular dementia, Binswangers, from a lifetime of high blood pressure and artery disease.  She hasn't had any specific events that I'm aware of, like a stroke, to trigger any progression, so I'm not sure when it started.  She seems to be in stage 6, although her memory is still pretty good.  She just has issues with cognition, confusion, and with operating things.  She's living in an assisted living home very far away from me.  I haven't moved her to me because she resists moving and also because where I live is so so expensive - she won't be able to afford care here for more than a year.  So, I've been visiting her as often as I can for the last 2 years and hiring local caregivers to help with shopping and appointments.  

I need guidance please.  Please tell me your stories with this disease.  I need to figure out when's the right time to move her to me.  I don't want to move her too soon and deplete her resources when she very well could have years and years left and could have a better quality of life out where she is because she can afford more there. How long did your loved one live with this disease?  What did their progression look like? 

Thank you for any insight you may be able to offer.

Posted: Tuesday, August 13, 2019 4:42 PM
Joined: 10/9/2014
Posts: 786

Blanche, I read about Binswangers and it sounds very much like what my LO has. Vascular Dementia is a subcategory of it.  My LO was diagnosed with VD with significant dementia at age 62!  She did have hypertension, diabetes, and had suffered with obesity earlier in life. Her neurologist confirmed the VD diagnosis, as her MRI indicated many strokes. Though she got immediate treatment for her ailments, her dementia progressed pretty rapidly and within a few months, she was wheelchair bound and double incontinent. Her balance was extremely poor and that is why she kept falling and getting fractures. Short term memory was non-existent. Her progression was in a stepdown fashion. She required MC unit after only a few months in regular AL.

Five years later, she is end stage dementia and barely says a word. Also on Hospice.  She is in bed most of the time and sometimes in the wheelchair. She stopped recognizing me in year 3. 

Even patients with the same condition progress at different rates. I have read that the average life expectancy for VD patients is 4-5 years. We are a little past the 5 year mark. I learned to expect the unexpected. 

  So, what I might suggest is to consult with an attorney to see what kind of situation she is in financially.  With no assets and limited income, she might qualify for state benefits.  Some states, like mine, offer benefits for  care in AL or MC for those who need it according to doctor's recommendation and income eligible. It's similar to Medicaid. 

 If she's happy where she is, I'd find that a big plus.  Perhaps, see if they have a wing that can handle her if she needs more hands on care late on.  

Posted: Wednesday, August 14, 2019 9:56 PM
Joined: 8/12/2019
Posts: 4

Thank you so much for sharing your experience with me.  

I'm so sorry you and your wife have to go through this.  

I think I may have to just leave her be where she's at.  I just want to be close to her when her time comes and I want more time with her while she can still talk to me and tell me her stories.  The state she lives in seems to have better benefits than my state. 

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