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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.

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Your doctor is the best guesser here and will likely not do so. First of all the doc knows the whole person as well as the depth and breadth of the diagnosis and prognosis. You can read generalizations online but they are just that.
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.
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datanp97 Nov 2024
Appreciate the sound advice. Living in GA, there is, unfortunately, no division of assets. (Only Medicaid divorce.) My husband and I…..we are as one.
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 !!
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My late husband was diagnosed with vascular dementia in July 2018, but was showing signs a good year prior, and died Sept. 2020.
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.
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Vascular dementia is not one type of dementia but rather and umbrella that includes subcortical vascular dementia, stroke related dementia, multi infarct dementia and mixed dementias (https://www.alzheimers.org.uk/about-dementia/types-dementia/types-of-vascular-dementia) - timelines and symptoms are going to depend on the exact causes and how well they are being treated as well as the exact area of the brain damaged. Co-morbidities are also going to play a significant factor.
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.
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MiaMoor Nov 2024
I think that this is the best answer.
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).
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One reason why those with vascular disease may not live as long as other type of dementias is that other serious conditions are likely to contribute to their developing VD. From the web: "A person who has had a stroke, or who has diabetes or heart disease, is around twice as likely to develop vascular dementia as someone who has not had these conditions." My mother has been showing signs of vascular cognitive decline for some years, and a CT scan shows significant small vessel damage. However, she has lived a healthy lifestyle, does not have diabetes, or high blood pressure, and is now 93 years old. I thought other health problems were going to take her three years ago, but she is now healthier than she was then.
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My mother lived for 6 years with vascular dementia and died at 95 in 2022 with congestive heart failure.
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Plan on 15 to 20 years. Many people will still die from other diseases. MIL was 15 years from family knowledge. My mom was 11 years
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datanp97: Pose your question to his neurologist.
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datanp97 Nov 2024
He will not commit to any timeline because every case is unique.
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I’m so sorry you’re going through this.

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!!
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My mom was diagnosed with Vascular Dementia 10 years ago but we think she probably had it a couple years before that. She's now 97 and lives in Independent Living Facility. She was always very athletically active her whole life, skiing, dancing, hiking, bowling, golfing etc. I think this has contributed to her longevity more than anything and is something to consider as well. We are just now thinking of moving her to memory care as she is having trouble remembering where her apartment is, why she's on the elevator etc. I have done her bills, housework, laundry, dr appts etc for quite a few years now while she lived in her home alone.

Plan for the long haul, no doubt. You just never know.
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MiaMoor Nov 2024
It's one of the more unusual forms of dementia, isn't it? My mum was aware that she couldn't work some things out, but could still beat me in a quiz. Even when she forgot how old she was (she always reverted back to 30 years old) or she couldn't remember the way to the bathroom. Then the next day, she'd know where the bathroom is and that she must be old, just not exactly how old.
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.
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Mother passed 5 years after diagnosis, but it was clear to me and others that she had had vascular dementia several years before that - possibly 5 years - so a total of 10.
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And that is an "average" life expectancy of 5 years. My mother has had the diagnosis of vascular dementia for 4.5 yrs. She had been showing cognitive issues prior to the diagnosis. It can have an event that causes decline and then level off,as I read here and have experienced with my mother. Its up and down ,no clear path, she can't remember what and if she had lunch , but can do high level calculations.Therefore it is one of the hardest dementias to treat. Prepare for the long haul.
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data, the fact the doc will not commit to a timeline says it all.
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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My Mom has been going on 7 yrs now, so I think it all depends on what your doctor says. Prepare to get help when you need it at elder.com, or care.com, to search for caregiver help. It is more reasonable than a nursing home, and you list the pay you can afford. He can also be signed up for hospice care which is covered by Medicare 100%.
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My mom was never formally diagnosed with vascular dementia, but over the past five years she has had a major heart attack, and stage 1 breast cancer, and was subsequently diagnosed with coronary artery disease and congestive heart failure. Through it all, she had been experiencing some minor loss in cognition which I had always just assumed was a result of normal aging, medication, and stress caused by major medical events, etc.

I had never even heard of vascular dementia until she woke up one morning this past October with a bright red face and sudden inability to get out of bed. (up until then, she had been able to take herself to the bathroom, get herself showered, and get around the house with a walker) It's like she had forgotten how to move her body and was also exhibiting signs of confusion.

The night before, she had a stomach ache with upper abdominal contractions, which wasn't a normal occurrence for her, but she did have some gallstones, so I'm pretty sure she was having a minor gallbladder episode. I called her hospice nurse and described her symptoms, and she agreed that was most likely the issue, so she told me that as long as she wasn't in horrible pain, I should check her vitals, and as long as they were normal, administer her pain meds, apply a heating pad on low, and have her lay on her left side to help the alleged gallstone to dislodge from the bile duct. I checked on her throughout the night and she appeared to be sleeping soundly, and her body temp. and resting heart rate were ok, so I went to bed.

When I went in to get her up in the morning, that's when I found her with the bright red face, confusion, and a resting heart rate of 155. So I called her hospice nurse and she came to check on her. She assessed my mom's condition and got her started on some oxygen which corrected her heart rate, and we got her changed and comfortable and she changed some of her meds and pretty much said that it may have been a TIA, or something like that, but that it was all part of "the process." Which I understand, because hospice isn't so much about diagnosis, but more about comfort care and pain management.

But, of course, my mom (a retired RN) and I (an internet sleuth) were curious to know more about why this may have happened, so I took to Google and typed in her symptoms, (sudden facial flushing in a senior female with congestive heart failure and coronary artery disease.) and the first thing that came up was vascular dementia. It went on to describe the seven stages of vascular dementia with time frames, etc. And it also said that the condition can be exacerbated by medically induced stress. In our case, it was probably the gallbladder attack.

Because my mom had been suffering from health issues for many years already, we were pretty sure that she was in the later stages of vascular dementia. I found it rather unsettling (though, unfortunately, not surprising) that through all of her many hospitalizations and Dr. visits, not ONE doctor ever even uttered the words VASCULAR DEMENTIA to us.

This happened in mid-October, she never regained her ability to walk, (btw...she didn't have paralysis or any signs of a stroke) and her cognitive impairment progressed fairly rapidly, causing episodes of "crazy talk" and hallucinations. But she would also have days or times of the day when she was perfectly lucid and able to hold a normal conversation. We had a hospital bed brought in, she was put on oxygen full-time, and we had a CNA every day to help with at least one changing.

When they started her on dilauded, I would still be able to talk with her and watch tv with her as long as I caught her like an hour before her next dose, which was so great. In the last two weeks, we got full-time, round-the-clock nursing care, and she only had two days of complete unresponsiveness before she passed away peacefully here at home at 12:30 pm on 11/25.

Long story short, I'm guessing it was right around 5 to 7 yrs. for her.
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I dont think anyone really Knows . I had to Place my Mom in a NH and she was gone 3 and a half Months later . Although something had been Off for years . My Dad was diagnosed with Vascular Dementia But he was Off for 9 Years so It Varies . One friend her Mother Has No idea who anyone is yet she is in her 90' s.
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More than 15. Many people die from othercomorbidities
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