I am wondering how long the worst stages last. So I don't mean this to sound callous. I am trying to prepare myself for how long my mom will suffer.
In 2010 she was run over as a pedestrian by a driver who was texting, and suffered traumatic brain injury. At this time she seems to have suffered a series of small strokes and was given a vascular dementia diagnosis. I tried to keep her independent until 2013, which was very difficult. Some of her symptoms have worsened, such as memory and cognitive processing (thinking of words, moving slower), but some of her symptoms, like hallucinations and stuttering have totally gone away. She is not incontinent. She is in assisted living, and that facility is forcing us to put her in memory care.
So she seems stage four to me, but maybe stage 5. What is next? How long can the next stages last? How long can stage 7 last? Because frankly I would prefer for her to never make it to that stage, one way or another.
A doctor who met with her for 15 minutes gave her a 10 year til death prognosis. But in 2010, a doctor who met her gave her a 5 year prognosis, and obviously its been 6 years and her body is pretty healthy if not her memory. And 10 years seems so broad and vague - how much of that would be the agony of stage 7? What's the longest anyone's ever been in that stage?
She will also totally run out of money in three years, and the idea of her being young -- she is only 65 by the way -- and forced into a MediCal housing (I cannot help as I am pretty low income myself even though fully employed and highly educated) and being aware of it, or also bad, not being aware of it but suffering for seven years in stage 7.
I see. However, as she has no spouse and I have given up my life and career to take care of her and am desperate for answers and you must imagine how hard this is on me, I really appreciate your compassionate response and help.
Jim, there is no set time frame. My SIL went 9 years from diagnosis. My FIL went 20+ years - about 6 in the later stage. My mom was about 12 years but had physical problems too. My sister had a stroke 5 years ago and is passing my husband who was diagnosed 8+ years ago.
If you are on Facebook look up Forget Me Not - Vascular Dementia group, USAgainstAlzheimers, Pathway to Knowledge, and Dementia Aware.
Jim, my husband went 14 years from the time I noticed the first, mild symptoms, although he did not get the definitive diagnosis until much later. I would say that the "agony" time--when he took a sudden, marked turn for the worse, needed total care and was very difficult to manage, lasted from Apr. 14, 2014 until Sept. 2, 2014, when he died. So about four and a half months for us.
There are no even partly clear answers to these questions Jmo, I'm sorry. My father had vascular dementia. I'm not qualified but I do believe it's very likely your mom will be here more than three years from now. No one knows.
It is impossible to make accurate predictions about lifespans. It is a very sad situation. A number of of are dealing with spouses who are young and with dementia. For someone who needs to live in long term care facility going on Medicaid is common, very few people can afford the costs.
I suggest looking for other boards about dementia. There are a number on FaceBook. Go check out Alzheimer's Association http://www.alz.org. They cover all forms of dementia. You can find the local one and then look for face-to-face support groups, some areas have younger (early) onset dementia support groups where there are people more likely to be situations similar to you own. You will find that finding other caregivers with situations similar to your own is best.
But as the admin stated, this support group is only for people whose spouses and partners suffer from some form of dementia. We tend to have similar issues which are not faced by people caring for a parent or caring for a child (an even worse situation). This site was founded because Joan discovered that the resources available at the time didn't address the issues that spouses face.
Uhhh. . . .?? Maybe you want to ask how long it will be before her cancer kills her? or maybe her COPD? She doesnt have those you say? Then perhaps you should not be asking about Alzheimer's Disease because she doesnt seem to have that either. . . .
What you have described 'traumatic brain injury' and 'vascular disease' (strokes) is NOT "Alzheimer's Disease". There is a difference. Perhaps her thinking is messed up? Perhaps a doctor used the word 'dementia' but those are NOT at all the same as "Alzheimer's Disease".
She has another pathology and anything you read or are told about "Alzheimer's Disease" will be wrong and not applicable. The stages of Alzheimer's are not appropriate to your situation. . . .
The tragedy that is NOT discussed in the media is that people with brain diseases (and Alzheimers is only ONE of 75 different types), commonly have few other conditions. They are (unfortunately) quite healthy and (sadly) live a long time as their brain continues to degenerate they need more and more 'custodial' care. Which health plans do not pay for.
Pancreatic cancer can take somebody in 6-8 months. A sudden cardiac arrest kills in seconds. In the cognitive impairment world, time is measured in many YEARS.
And BTW - a difference between you and us SPOUSES, is that when our SPOUSES die, we have lost our world and our future (and our combined financial reserves) when your PARENT dies you will be free and your future will have just begun again.
Mary, It has been the longest road I ever traveled. Full of more twists that could be imagined, but I am still here. If it were ONLY grief, it would have been easy.
A few of the things that happened; (each has its own story too long to type here) Being told by a mental health therapist that that I should keep the story to myself (and NOT share it with others) because it is too painful for THEM to listen to.
Being sent home from work for 13 months on administrative leave (with instructions to NOT have contact with any coworkers) because of a grieving incident at work. I would go 3-4 days speaking only to the clerk at the market. . . .
And finally missing my wife's funeral in Illinois (I live in California) because the funeral director only spoke with her brother (who lives there) and never called me. I flew in the week after . . . . BUT he still sent me a bill for $2000 for "professional services" and NO, I didnt pay it.
Jim, I'm happy to see you "are still here". I saw that Joan mentioned your involvement with her site a few months ago.
I'm wondering if you have any interest in talking. There is a safe thread up now. That might be a place to try and put down some of the things going on inside. I'm just thinking and there's no need to answer that idea.
Thank you Wolf, I do support Joan in her efforts keeping this site up. ALZ assoc, ALZ Foundation, local in person support group and NOBODY helped me more or taught me more than the other spouses on this site. The people here are honest and pull no punches. I grew to hate places that try to sugar coat ALZ. The ALZ Spouse must continue!
Too many organizations/information sources that say that "ALZ aint so bad" are liars it is worse than you can imagine and anybody enduring it needs to prepare for the worst. The people here helped me do just that and I will always be grateful.
As for my personal recovery I discovered a grief group hosted by a church that is run by a woman who has been doing it for 30 years(!) She is fantastic. She totally gets grief and with other facilitators that she has trained, she helps people get just what they need. The only rules are that every helper/facilitator MUST have themselves personally experienced a death/loss.
Three separate small groups; loss of spouse, loss of child (even adult) loss of parent/sibling/friend. This set up because the leader knows that the only people who 'get it' are those who have been there. (sound familiar?) We meet EVERY Tuesday. Rain, shine or holiday. This because grievers need to talk on holidays too.
Here is where I learned all about ALZ. Now I am learning all about grief. And like ALZ there is so much to know. So much that even professional counselors dont know or understand. Like ALZ you need to be helped by someone who has seen it up close and personal.
As an FYI I frequently drop by, look in and see what is happening but as you can imagine the topics can be painful to read and they can bring up a lot of memories that dont need to be dredged, so I dont always comment. But like I said I am so pleased that others are coming together to help the new people and support each other.