This week I am consulting with the 3rd elder care lawyer. This is mostly because the first two gave me such conflicting opinions.
But I can't afford any more...(opinions).
I think I am among the younger spouses. At 52, I know Nikki is younger than I am and from posts I am guessing that emily, divvi, pamsc, soolow, LFL and Deb in Chicago are younger than I am. Others, I don't know as I am only saying this based on posts I have read.
Perhaps my H, also 52 is among the youngest? 39 when the problems started.....
The general N said H can live for 30 years because there is nothing wrong with him other than FTD. This is not really correct because he also has a seizure disorder, but N said that does not involve major body systems like cardio, pulmonary, hepatic, renal, etc.
He was dx with mci in 2006 and FTD in 2009 and since then the dx is like take your pick: but mostly between FTD and EAOD. After a lot of thought and input from this forum I agree with "the" dx as starting in 2006 because that was when the scale that began in 1999 shifted from mostly normal to mostly this.
I intend to keep this appointment but dread it at the same time.
30 years? That would make him 82 and I have read here that that can happen.
Like me - one day at a time but plan for future things that can happen. My FIL was one who lasted a long time. He was 63 (1985)when we were visiting and he was acting weird - specifically when we were leaving to head back west he grabbed me and laid a wet, sloppy kiss on my lips. I could not pull away soon enough. He lived until 2010 and did not become incontinent until 2001 after being placed. They are talking all the time about green tea, but I wonder about black tea. they had their tea with breakfast, mid-morning, lunch, mid-afternoon, dinner, and late evening.
So, I have that prospect. His sister seems to be going faster, was diagnosed at 55 but definite signs at 50 but I attributed it to depression after the sudden death of her husband and then a year later their mom suddenly died. My husband is going slow - so far - compared to her, so who knows.
I try not to think of how long this can go, how much of life I will loose waiting. But, I also try to plan - there are things that need planning like DPOA and if you have money/assets they need to be set in order to protect (I don't have them).
Get things in order for the future financially and for having a voice in his care, then take it day by day not dwelling on how long this will go on.
Scary thought, isn't it? I would seek advice on how you might finagle long-term care eventually. Just because no one can do this for 30 years. I don't think it'll be 30 years, but for peace of mind, I'd think about how you might transition to not being the sole caregiver.
Abby- Relax..God is in control. I also had read how long term this could all be, and worried so much about staying afloat. I planned for long term care, and wondered how I would be able to afford it, and how I would manage to survive it all. However, rapid decline changed everything, and I still have trouble accepting the fact that it happened so quickly. My point is that you never really know how this will progress. Any estimations are only someone's wild guess, and in reality, you need to live through it to the end. We tend to worry so much about everything, and wonder how life will be played out. The truth is that you can never know...the outcome could come slowly or it could progress fast. The key is to continue being the best caregiver you can be, and not worry about what you cannot control. Believe me, someone is in control of the whole situation, and you just need to accept that and understand that you will not understand.
Oh Phranque*, such good advice! I too wonder how long this will last, but I have total faith that the Good Lord gave me this challenge for a reason & if I don’t know why this side of heaven, well that is also His will. Does that make it any easier day by day? Of course not. It’s good to try to have a plan (I am a planner) but in our case it can’t be a plan carved in stone, because of the variables of this disease. God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference
abby first off, i am not younger than you sweetie! i was in my late 40's when dh was dx. and i have been a caregiver for him now 12years and running. i think the average timeline is said AFTER diagnosis is around 8yrs. we do not have diagnosis of ftd which they also say runs more quickly compared to reg AD or vascular dementia which is our diagnosis, i personally think 8yrs is a lowball figure as with meds and good quality care either at home or a facility, they tend to live longer. that being said, it is sure that the body takes a huge hit healthwise with this disease that compromises organs and complications can occur rapidly. 30yrs is surely excessive and none of us want to think it we will be in this for that long. dont despair just get thru each week as you can and dont worry. get y our affairs in order and prepare for your future and dont wear yourself down thinking of all the 'what ifs'. we do not hold the future in our hands and must trust that we will never have more on our shoulders than we can manage. let us know how it goes with the new atty. be sure to tell him of your concerns and conflicting info. see his credentials and listen then decide. best of luck. divvi
abby--my husband was dx at 60 with EOAD, had no other health issues except high BP, which was and is controlled by medication. He didn't smoke, exercised every day, etc., was in tip top shape. He is now 67, in late Stage 6, still strong and ambulatory, no new health issues. However, last summer his neuro gave a life expectancy of 2 to 5 years when I asked him (in other words, didn't seem to take his age and general health--other than AD--into account.) My point is, it seems as if the rate of progression of the AD, not the patient's overall age/health, primarily determines how long they will live (at least in our neuro's opinion). The body's major systems may be running fine, but if the brain gives out, the body can't continue. Of course, there are always exceptions, but I'm not sure there's a correlation between young age of onset, good physical health, and the duration of the disease.
Good commnets regarding the estimation of 30 years. That is something I would try to forget. This is your life and your spouses life with or without Alz. Do you think ANYONE could tell you how long you are going to live without or without this condition? I don't think so! This is a condition that does get worse year after year. But, there can be many good years before alot of the bad things start. Since my dh's dx we have taken several cruises and did a number of very interesting things together. We also have moved into a different home and life goes on One day at a time. You are very smart to be seeking legal help and we are all here to offer you our support.
My experience is no one knows the pace of the disease nor can give you any reasonable explanation as to the end of life timeline. They can tell you if they see decline but not what to expect next. I feel the same about the seven stages we hear about..not very definitive and, of course, no diagnostic/progression tools..just observation. It is frustrating, I know, but we can't expect any guidance with certainty.
Well Abby, today my husband informed me that he is going to be like my mother and live a long life (she just celebrated her 91st birthday). I am 52; my DH is 60 (diagnosed with MCI in 2010). So if he gets his way, I guess I have over 30 years to look forward to :)
Maybe your advisor just wanted to highlight a worst case scenario, so that you could use that for financial planning purposes – which, I suppose is the prudent thing to do. (If you are trying to calculate average duration of the disease - I think the 8 year average is from the Alzheimer’s diagnosis, not the MCI diagnosis or first symptom.)
It is hard not knowing what’s coming next. Not knowing how long this is going to go on. In reality though, having that knowledge wouldn’t spare you anything. I know all about the symptoms & stages. And even if I could know exactly how long each would last, it still couldn’t prepare me for the gut wrenching feeling I experienced: the day he went berserk in a JC Penney’s, the day he couldn’t remember his client’s names, the day he couldn’t count money, the day he walked out of the sandwich shop with a ketchup bottle in his hand, etc., etc., ad infinitum.
I have found that I simply cannot spend time worrying about what’s coming next, or how long it’s going to last. I spent 2 years doing that, and nothing good came of it. It just exhausted me. It really is not in our control. I have a small bumper sticker on my computer that says “GOD IS IN CONTROL” to remind me of that :) Spending time worrying about tomorrow robs you of any enjoyment you can find in today.
Anyone of us could die in the next moment from a cerebral aneurysm or heart attack or any number of other problems. Your husband included. On the other hand, he could live a long, long, life – even with dementia. But what difference does it make? Each day, you have to get up and put one foot in front of the other, and keep on keeping on. And each day is a gift, one we shouldn’t take for granted - even if it does contain hardship.
Well, I just wrote the longest post I ever wrote and was timed out. I'm so tired I can't even see straight. At least this second attempt will not be so long.
H is suffering. He can no longer read, he can no longer write. His waking hours are mostly spent staring at whatever he is processing in his mind. He eats, eliminates and watches some tv.
Years ago while I was working at a hospice he responded to a social conversation where he was told volunteers were needed. To say it did not work out is an understatement. He responded very strongly, emotionally, to what he felt was the hopelessness of those he visited. (I am just saying that is what he said.)
He made me promise I would never let anything like that happen to him and now it has.
So, the neurologist says he has changed his mind and that I need to plan for 30 years of this. On one hand, who can afford 30 years of alf (N still says H will need placement this year) at $5000 per month? On the other hand, if I keep him at home and he dies earlier, how can I justify that I kept him here instead of having him live in a great suite with a view, conceirge services, gourmet meals, etc?
I am too tired to resurrect my first post, but want to thank all of you for your compassion and help.
Abby - if you don't want to type, copy and paste from a Word document, if you can remember after typing a long post here - copy it. that way if you are timed out you still can go back to the thread and paste it. I do that when I get long winded! if I remember.
Abby, after several years of paying that $5000 a month to an ALF, having Hospice paid for by Medicare must seem like a financial relief to many. If a nursing home placement had been in place, the cost would have been more like $100,000 year, although after a few years of that many families would have been so broke that by then they'd then qualify for Medicaid. Would my thinking change if the taxpayers were paying for the care? I certainly hope not. At some point I want to allow natural death and free him from Alzheimers Hell.
Abby--lots to do with dementia is guesswork. You sound like me--a person who can't "take each day as it comes". I want to plan, I want to think out all the alternatives. Get at least a second opinion from another doctor before you start planning for 30 years of care. If your husband is suffering, then perhaps he isn't medicated properly. I don't remember what stage he's in and what meds he's on, but he should not be suffering day in and day out. There are many choices in psych meds and a good doctor can put together a cocktail that will help your husband's emotional state. It is much easier on me now that my husband is content (due to meds and perhaps, disease progression). When he was angry and unhappy all the time, it wore me down too.
Yesterday, I gave a talk about caregiving at a Senior Center and saw the wife of another patient at my husband's ALF. She told me that Steve was dancing with one of the employees in the afternoon. If you had told me that in 2011, before his big medication adjustment, that a year later he'd be dancing--I would have said you were crazy. My journey has resembled Nikki's--there was hell earlier on, but we found solutions that gave peace to our husbands, and consequently, to us.
Not surprisingly, like Marilyn, I am a J on Meyers-Briggs as well. (Meaning I need to have thought through all the options and at least have a "for now" plan in mind, versus "wait and see...")
But dang, yeah. The whole question of affording ALF care and for how long is sure one I've been wrestling with. If you're looking at an indeterminate future the cost, over the long haul, appears too preposterous to contemplate. On the other hand, that same indeterminate future, and the thought that you will never get any sort of life back increases the incentive to place. Flip side of the record: If you knew you only had 3 years left you could a)deal with it all by yourself maybe, knowing there was an endpoint, and b)know that the cost of ALF care wouldn't kill you if you made that choice. Both sides of the equation contain factors that cancel each other out.
Abby----I think Phranque, divvi and marilyn have summed up the situation correctly. My husband, when diagnosed at 53 and otherwise healthy, might have had a 30 year life expectancy at that time. In the 6 years since then, he has been hospitalized twice, once for over a week on an ER/ICU basis, which really sped up his dementia rate of decline. His most recent hospitalization was a planned hernia surgery, and he actually has bounced back well after that. With that said, you can tell his bodily functions are slowing down (incontinence, doesn't always remember to swallow, but thankfully still chews and has a good appetite). So I wouldn't be surprised if the average 8 years after diagnosis might be more accurate, but I have finally realized that none of us really know. My husband always said "plan for the worst, but hope for the best", and while it has a totally different meaning to me now considering his condition, that is what I still try to do. In fact, my daughters and I realize that really applies to all of us, doesn't it?
Dear Abby, I am not younger than you-I was 57 when DH was diagnosed in 2008 (he was 58) and I am now 60 (almost 61). I also would like to know how long we will be on this journey, especially a long journey of 30 years will bankrupt us. DH was dx'd in 2008 with unspecified pre-senile dementia. I took him for a second opinion and he was dx'd as FTD with a possible mixed dementia (FTD/EOAD) dx. The dr intimated that Rich had no more than 2.5 years to live. WRONG!
I think we need to have a financial plan with a few alternatives...planning for 30 years of this disease and caregiving is probably a wise thing in case he should live that long. Then I think there should be alternate plans outlining what you would need to do if he only lives 10 years. My fear is that we will go through all of what we saved and nothing will be left for me. As I've said before, I have a pre-existing debilitating illness for which I've saved since I cannot get LTC insurance and as of now it appears that care for Rich may deplete all his savings and mine. It is a dire prospect for me.
Rich is still very physically healthy, continent, physically active but had trouble swallowing late last summer which hospitalized him with aspiration pneumonia. As much as I wish I knew how long this journey will be, I have no idea.
Abby, You are not alone. I am 53 - wife is 61. (dx 57) Since her Dx all her other chronic health problems have disappeared !!! A lifetime of overeating and she has lost 75 pounds(!) A Lifetime of hypertension and her B/P is excellent! (and I pulled her off all her B/P meds) Her parents both died in their mid 70s
This is scary. Fortunately I have been able to maintain a job, BUT that entails my 80 y/o parents watching her before/after day care. She has SSDI and a pension that (for now) covers the day care.
If mom/dad cant take her, (eventually) then the home care or ALF bills will cut into my salary and the downward spiral will begin. Phranque is right it aint in our hands. If you want to huddle up and be scared together, I understand.
I was 52 and my husband was 62 when he was diagnosed in 2008 with Lewy Body Dementia. I was told life expectancy of 2 to 20 years. As slowly as he is progressing, I would currently guess at least 10. Someone I work with told me that her mother was diagnosed with dementia and she wanted me to know that none of her worst fears came true. I don't know the story, but it has helped me not focus too much on the worst case. Unfortunately, it is the job of lawyers to focus on the worst case.
Yes, I am so scared and that is why I huddle here. (m-mman!)
marilyn, you get me and you always have, ever since I started posting here. H is on relatively few meds: keppra, aricept, lorazepam, ambien (all generic). Neurologist has indicated others might be tried but is reluctant to do this while H is at home. I think there is hesitation because of that, because of the seizure disorder and to be honest, a concern for my safety.
Any plans that I had for his placement have been derailed with this recent opinion that this could go on for 20 more years. Previously I was told "3".
Meyers-Briggs! As an intern I used to give that test to undergraduates and they seemed to always enjoy it. I have always been INFJ and rarely INFP. The index for me on IN has always been strong.
texasmom- yes, I firmly believe that hospitalizations due to seizures have done nothing but harm H. What could/did they do other than run the same tests, medicate heavily and then in a couple of days release him for "follow up".
Tomorrow is the consultation with elder care lawyer #3. Oh sheesh.
"none of her worst fears came true". My wish for all of us!
I was 52 when my husband was diagnosed July 5, 2008. He was 63. At the time I estimated he was early stage 4 according to the Alzheimer's Association. His neurologist said early moderate. By December 2009, he was in late stage Alzheimer's and I couldn't care for him any longer. I placed him in an ALF. Today he can no longer feed himself, he can't communicate, and he is now wheel chair bound. He declined so fast in 1-1/2 years. We saw an elder care attorney in December 2008 and I thank God we got all the legal papers done (DPOA for financials and health, health care directives, updated wills, and he transferred his interest in our home to me. I don't know how long he will live. His doctor said each stage could be 2 to 10 years. I will run out out of money to care for him in 13 years. I did my planning based on how old both his parents were when they passed with Alzheimer's. I don't know how long my husband will live I just recommend getting the legal documents done first. If we had waited 3 more months, my husband wouldn't of understood what he was signing.