My husband was officially diagnosed in January 2024 with vascular dementia following 2 CT’s and a lengthy evaluation. I read it is one of the more aggressive forms of dementia with an average life expectancy of 5 years. I’m planning for future care, because I know what’s coming, but understand Medicaid in Georgia has a 5 year look back period. With that lengthy look back, I’m not sure I should even consider Medicaid as an future option in my plan.
There is no way to predict this.
You are going to need Medicaid as this isn't doable or affordable in the home.
So you need to keep meticulous records now.
I would consult an elder law attorney about possible division of finances as this could eat into money you will need for your own future.
Buy and hour of time with an elder law attorney. Take with you what you know of all your finances, amounts and where they are (for instance "this in housing", "this in accounts, " this in CDs, in stocks and etc.
You need careful guidance now in so far as possible, but these things are unpredictable. He could have a massive stroke and death tomorrow or he could go on many years past 5, and you will NOT be doing home care during that.
I am so very sorry about this dire diagnosis. Go online and learn all you are able. Enlist all the help you can find.
My elder law attorney recommended placing assets into Medicaid compliant Trusts, but if there is less than a 5 year life expectancy and a 5 year look back, Trust’s don’t seem appropriate. Then again…. I just might be the one who has the stroke !!
We can read and plan all we want but bottom line is no two people are alike, my advice is to have a plan for the worst case scenario and then take each day as it comes. It may help if you establish a firm boundary on what you are and are not willing to do so it will be clear in your own mind when you have reached your limits.
I read about the 5 year life expectancy with incredulity. My mum had vascular dementia following her stroke 13 years ago and died this year. The main causes of her death were a lack of eating (since the stroke because of damage to the part of her brain that controls appetite) and COPD.
If Mum had eaten meals, she would have been stronger and would have continued moving, which means that her lungs wouldn't have become so weak from the COPD. She would have lived for many more years. However, her quality of life would have been reduced by the dementia.
It really does depend on what caused the vascular dementia and what other health issues there are.
To put this into context, an older cousin of mine had a stroke the same week as Mum, but sadly didn't survive. Another cousin had a stroke the next year, and made a good recovery. There is a history of cardiovascular issues in our family, regardless of lifestyle (but smoking certainly exacerbates it).
I was blessed to be able to keep him at home the entire time, even though it was quite difficult at times and even after he became completely bedridden for the last 22 months of his life and was under hospice care.
And because I was able to keep him at home, and because he went fairly quickly, I didn't have to worry about any trusts or Medicaid or the like.
So because vascular dementia is the most aggressive of all the dementias, with a life expectancy of just 5 years, I would say to get your legal ducks in a row now(and that will look different for everyone)and just enjoy whatever time you may have left with your husband.
My mother has vascular dementia for sure and possibly combo-ed with Alzheimers. Came on about 8.5 years ago and the last 4 she’s needed increasing care. She’s had strokes and seizures but keeps on going, including sailing past guesses that she has less than a few months left. I don’t know if she could have a final seizure tonight, or will live another 10 years.
For this reason I suggest planning for the long haul just in case….it’s really out of our hands.
Truly wishing you the best!!
Plan for the long haul, no doubt. You just never know.
Vascular dementia, for Mum, was so up and down. There was never a clear trajectory, even though it was inexorably downhill, as it is with every form of dementia.
It IS unpredictable.
When we are under siege in this manner we do wonder when there will be relief, how many MORE things must they suffer as we stand helpless witness.
I did as well, and it's normal. My brother with his probable early Lewy's dementia said he hoped he would die before it could rob him of everything, including who he was. And he DID. He had a small sore on his shin, kept putting antibiotic ointment on and keeping it well hidden, died of sepsis from it when it went through the blood stream and was methicillin resistant to any antibiotic. The organs in this gentle 85 year old man shut down QUICK on hospice home care. And he DID beat Lewy's in that manner. I was happy for him, and I thank goodness I never had to see him suffer further.
We cannot know. We want to plan. Lining things up makes us think we can bring order to this chaos. And we cannot.
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