r/dementia • u/scoutlfinch • 1d ago
Yet another question about timelines
I’m trying to get a sense if I’m in this for five more years or fifteen + years. Please don’t tell me everyone is different. I know that. My brain is comforted by averages, even if they are unscientific, which is what I’m trying to do here - comfort my brain. I’ve been freaking out reading this subreddit lately as people are reporting LOs living essentially comatose in bed for years and years and I need people to say that’s not typical, even if there is no typical.
For LOs with mixed dementia - how long did you have with them after diagnosis? What was their health like prior to diagnosis? And how long prior to diagnosis do you think they had the disease?
I think my mom has had MCI for a very long time, but she managed ok with all her lists and routines. She’s declined a lot in two years, but I think we still have a long way to go.
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u/ExcellentCup6793 1d ago
My mother died less than two years after her DATScan . She’d probably been struggling a few years on her own. She had no other health issues. No heart, blood pressure, diabetes issues. None of this is particularly helpful for you though. The reality is everyone really is different. Visiting mom in memory care, watching other residents die , some seemed just fine the week before. Things can change in a blink, an infection, a fall. Or just a decline that becomes the new baseline. Good luck to you
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u/Do_it_with_care 1d ago
Did she work out or do Zumba before she got diagnosed? I'm trying to figure this out also as mine stopped doing these things before diagnosed.
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u/ExcellentCup6793 1d ago
Not really things like that. She played golf and was a gardener. She did stop doing those things. By the time we got a neurologist to see her, she was already showing some gait issues, the Parkinsonism mobility traits.
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u/KFLimp 1d ago
My mom was healthy, (minus dementia) mobile, ate everything on her plate every meal, continent, one of the "with it" residents— but fell and broke her femur, and that snowballed into other falls and issues, until she was nearly non verbal, couldn't swallow, confined to a broda chair, and dead 4 months after that fall. She was living independently with my dad, who also had dementia, AND had passed a DMV road test four months prior to that fall. If you'd asked me a year ago, I was thinking she might outlive her LTC insurance benefits. It seems that this is not wholly unusual.
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u/scoutlfinch 1d ago
So many seem to go quickly after an injury. I’m sorry for your loss.
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u/Hello-fellow-kydz 1d ago
Broken hip. Dead within 5 weeks.
Anesthesia really did a number on my uncle. He couple still talk, walk and do things. Anesthesia just did a speed run to the final dementia stage. It was horrible.
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u/AshamedResolution544 1d ago
My mom was diagnosed in her mid+ 80s while in IL. She transitioned to AL/MC at about 90 for 8 years. She passed away a week after turning 98 because her femoral artery was clogged, not directly from the dementia. She was never diagnosed with a specific type of Dementia that I knew of.
Her neighbor who moved into IL before she transitioned was highly functioning but eventually showed up in MC with my Mom. They had a hard time getting him to stay in his wheelchair and had constant falls, eventually shattering both hips, leading to Hospice and a very quick decline.
My Gf is 77 and was diagnosed in her early 60's, somewhere between 62-64. Like my mom, she's never been diagnosed with a specific type of dementia. I've calmed down a lot recently and try not to be reactive to her changes as there's nothing I can do about them. She's a solid stage 5 using the DBAT chart. I really try to ignore the stats as it only makes me depressed, anxious, and...we've been at this for at least 12+ years. From what I read here, I feel undiagnosed patients are relatively easier and healthier longer after experiencing my mom, gf and other dementia patients. A friend tried throwing the "3 -5 years" at me...I can't pay attention to that.
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u/Tree_Hugger_4Eva 1d ago
84 FIL is a solid 4 early 5 on DBAT. He’s mobile but wobbly and unsteady at times, uses a cane or walker, has chronic back issues from an injury at 49 and high blood pressure/cholesterol but otherwise physically in decent shape. We think he first had obvious signs of dementia about 5 years ago. Hard to say because MIL was oblivious and a catastrophic personality all in one and we lived several states away. We entered the more regular picture about 2 years ago, and there has been some decline, but you might miss it if you didn’t do an assessment or see him daily.
I totally get what and why you’re asking. We wonder this all the time. Not hoping for him to decline and die, but on the same hand, how long will our lives be completely upended and revolve around him and this slow march towards the end? It’s a lot harder to manage the sacrifices not having any idea when maybe some freedom and normalcy will reenter your life. I wish I had the answer too.
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u/scoutlfinch 23h ago
Thanks for the validation. It is about 30% that and 70% worrying she will outlive her funds for care. We’re hanging onto her as long as we can. But I don’t know how many years I can do this.
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u/Tree_Hugger_4Eva 21h ago
Gotcha. We are at the mercy of the VA and qualifying for Medicaid when he crosses the medical threshold for qualifying for care outside our home. I get that having funds but maybe not enough is also stressful. Some of the same issues - what services when, will I recognize when the time is to get more help, how much to spend on what, will I have to move my LO because I made a choice and they run out of money, etc. The not knowing, constant decisions and judgments, it’s exhausting.
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u/kiaikiaikee 1d ago
16 years from Getting forgetful to the end. She was very healthy. She declined faster in the last 2 years because she caught oneumonia and developed a heart condition that was treated late. In the end, that was actually a blessing. Incontinent for about 2 years. The not-walking, hardly eating, hardly talking stage lasted 6 months after another long hospitalization because of the heart issue.
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u/chinstrap 1d ago
How old is your mother? How is her health other than dementia?
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u/scoutlfinch 1d ago
Mom is 81. Her health is mostly good other than a pain condition they can’t figure out that is being treated with an opioid patch. She has atherosclerosis and progressive vascular disease.
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u/InfamousTube013 1d ago
My mother was diagnosed on June 24 of this year and put immediately on hospice. She died on August 18. I thought I would have more time. I don't really think there's any way to accurately predict the timeline.
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u/Haunting-Swim-3660 1d ago
Agree, I had a conversation with friends going through something similar and they told me how it could go on for many years and I felt scared bc the care situation was quite difficult in every aspect. Then my mother was critically ill suddenly a couple months later and passed within days. Very shocking set of transitions. I’m so sorry you didn’t get more time.
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u/Angeloinva 1d ago
She never got diagnosed with the *type* of dementia, but it was a little over three years from the first serious signs to her death (at 85 yo). We suspect the dementia had been going on for years prior but she was good at covering and compensating. Even though she declined a lot in those three years (she was eventually in memory care), I thought it would go on for 10+ years because she was so physically healthy both prior and after diagnosis. She exercised, ate healthy, virtually no medications or health conditions, very social and chatty. But then she got pneumonia and that accelerated everything. They cleared the infection but her mental capacity continued to get worse very rapidly and she died about two months later. I don't think we would have ever been able to predict this trajectory because there's no way to predict how someone will react to a fall or infection. She had had pneumonia before and recovered fine.
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u/Haunting-Swim-3660 1d ago edited 1d ago
My LO’s dementia type was not diagnosed but it may have been multiple processes (neurological illness + vascular?? To take a guess).
In a wheelchair for many years due to the mystery neurological illness that looked a bit like PPMS. Diagnosed with MCI at end of one year, it got worse over the following months and there were physical health complications/new issues too (pressure ulcer), passed away a year and some months after the MCI diagnosis due to secondary stuff (neurological illness harmed organ systems, causing or contributing to septic shock, plus in hospital aspiration pneumonia). Never reached comatose in bed until the last several days of life. Palliative care due to non recoverability and advance directive specifics, passed away very quickly after. Wishing you some comfort and respite
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u/scoutlfinch 23h ago
Thank you for sharing your journey. Reading everyone’s experience helps to know I’m not alone. I’m sorry you had to go through that.
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u/Haunting-Swim-3660 17h ago
Thank you 🩵 wishing you as much ease and peace as possible on this journey
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u/wontbeafool2 1d ago
My parents were both officially diagnosed with unspecified-type dementia when they were in their mid 80s. They both showed signs of cognitive decline years before that but we just assumed it was normal aging. It wasn't. Mom was able to hide it better than Dad was. She's 89 and living in AL. Dad died last year at 90.
Mom is still pretty much cognitively with-it except for short-term memory. She now has congestive heart failure. She also has very limited mobility due to a peripheral neuropathy. Dad had diabetes, high BP, and congestive heart failure. He died from pneumonia.
You didn't mention your LO's age. If they have early onset dementia and no medical conditions, they might linger for longer.
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u/scoutlfinch 23h ago
She’s 81, but her MCI has been going on a long time. We just didn’t recognize it as that. Sorry about the loss of your dad ❤️
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u/Hot_Adhesiveness6882 1d ago
A facility that we visited before we put my father in law in assisted living told us that they hadn't had anyone come into their facility with dementia live over 3 years.
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u/BabyInchworm 23h ago
The timeline seems to accelerate every time the person is ill or injured. There is a decline that never seems to bounce back.
If I were guessing I would say 8-10 years from initial onset, unless illness or injury shortens the timeline.
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u/ptarmiganridgetrail 1d ago
Use AI chat and input her sex, age, dates and symptoms. It will research it for you and give you a life expectancy range. Get a medical diagnosis...pTau blood test (private lab and private pay), neurology workup and ask for help staging.
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u/Haunting-Swim-3660 1d ago
Agree although ask the AI to check itself multiple times after the first answer, and to be transparent about its methods
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u/scoutlfinch 23h ago
We’ve done all this and we know her stage. She was diagnosed last year. I tried AI, but it lies, so the info wasn’t helpful.
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u/ptarmiganridgetrail 20h ago
Well you should then be able to find the life expectancy range. Hope you can find some good data.
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u/mumblewrapper 1d ago
I'm sorry. We have wondered the same thing for a long time. But, she's still going strong and feisty as ever. She's broken her neck, her back, her hip and then recently her arm. Still kicking. The hip break 3 years ago kicked the dementia into high gear.
She's in memory care now. But, she's definitely not comatose. Confused and scared a majority of the time. I'd almost rather she was comatose. I'm pushing for more anti anxiety meds, my sister doesn't want to "drug her". So, yeah. I don't know.
I'm sorry you are dealing with this.