I want to know which symptoms signify that a turn toward a more care-intensive condition is imminent, and which can stay exactly as-is for 10-20 years.
I want to know whether it's probable that we will hit a spiraling-downward point, or whether we'll continue inching into a long, long future.
I know you all cannot answer these questions, but I still want to know.
thats a million dollar question. if we knew this we could have planned our long term care projects much more carefully. i dont think anyone can say as we know they all have different experiences during this timeline - mine plataued in mid stage thru late mid stages for over 5yrs alone. then another 2-3 in stage 6ish then now we are going on year 3 in end stage-late 7 with nothing to say it wont continue for some time. the only thing for sure would be an 'event turning' medical spiral that would cause an imminent demise quickly. and this could happen in any stage. so nothing is certain. in my case, loss of ablility to walk securely and most speech was a sign things were moving more quickly.
Wouldn't we all like to know! My husband went from early moderate to late stage in 1-1/2 years. He has been in assisted living now for just over 2 years.
Emily...I'm with you...I want to know. If I know what is going to happen, no matter how bad, I can usually handle it pretty well. It is the not knowing that weighs heavy on me.
emily, there is no telling. I was told that Gord was young and strong and could easily last 10 years or more. I was planning a second respite before I knew how the first one would end. I had his name down for placement and figured I would be going to the nursing home on a daily basis for at least 10 years. Then the plans changed. He passed away 10 days after leaving respite.
Oh Emily! I want to know all that and so much more.
I want to know how I’m ever going to be able to handle the things discussed here, when I seem to be pretty lousy at handling these early stages.
I want to know how I am going to care for my husband when I am not able to kick myself in gear to take care of myself (Reese’s peanut butter cups are really not a good stress management program).
I want know how I can keep my love for my DH in the forefront of our relationship, while pushing my resentment and sadness regarding this awful disease into the background.
I want to know is this “as good as it gets” for the rest of my life.
And when all these unanswerable questions pop up, I remind myself to stop borrowing trouble, to take it one day at a time. And when I do that – things seem much more manageable…
YES, YES, YES I want to know!Who is this stranger that has taken over my husbands body? Who is this man that agrees with whatever I want to do? I need that contraversy, i dont have all the answers! I depended on him to keep me grounded. It just gets worse all the time, and all we can look forward to is more of the same,Getting worse.
Yes, I want to know too how long our ourney with this terrible disease will last DH dx'd in 2008 and was on a good plateau at stage 5 for 3 years. Now he's in mid-stage 6 and I wonder how many more years we have ahead of us. Mostly I want to know if I survive him (not a given because his family lives into their 90's, mine only early 70's) will there be any money left for me to survive with the care I will need. The potential financial devastation worries me the most.
It seems the later stages progress faster (like water circling a drain.) I wish I knew too. I want to get on with my life. I have DH on "waiting lists" for assisted living just in case. He is getting where he can't really stay by himself.
Wife was diagnosed in 2008,ALF June of 2010,hospice last week passed away six days later,as I think back I believe once she was in ALF she started the downward slide,not much stimulation there and every month seemed to get worse,no timetable for this horrible sickness,like they say if you've seen one you've seen one.
My DW has been in a memory care facility for just over a year. She likely showed signs 3-4 years ago and was diagnosed with MCI. I agree with all above mentions. I was questioning the same things to myself just a couple of days ago. The 7 stages don't answer my questions as to how long for each and the variables between each seem vague to me at best. My DW is still able to walk, but not for long periods. The dillusions are increasing. She is able to feed herself but is loosing weight rapidly. She remembers me but not this morning or last week. She is incontenent. Her speech is sometime clear but often mumblings. There are times when she seems to move within the 7 stages yet no one clinical can say what stage they think she is in at any time. I understand stage 7 is nearing the end of life and likely may involve a skilled nursing unit or hospice. It is the symptoms mentioned in the other 6 that confuse me and lack clarity. We all seem to wait only having the end in mind.
I wish I knew too...it's not that I wish him gone, but this is so hard, the not knowing how long this is going to drag on...years! I would like to get on with my life too...everything is on hold, lets face, it we're getting on too. DH is on the list for two ALF places...but he's still no way ready for that yet..
Lauren, you need to see an attorney to get your affairs in order. They can help you with money sheltering and such. I am so sorry youre are facing this so young.
I found it to be hardest at first: to get a diagnosis, to accept the challenges and changes, and then to let go, knowing I wasn't going to win but only endure. By the time I got there, I was all worn out, but I had more peace of mind.
KY - some of us only have our spouses SSDI to live on. Until we can qualify for SS there will be no other income. And the longer we are out of the job market the less chance we have of finding work is they die when we are still able to work. So there is nothing an attorney can shelter.
Everytime I think of this going on and on and on for years I get instantly depressed. I don't want to see him gone either but the only way for there to be an end to this is for him to be gone. Double edge sword I would say!
My FIL went on for 25 years - that is my fear. But, once he is in a facility my life will then go on - where to I don't know. IF I still have the RV maybe hit the road again.
Deb42657, Try not to think about it. It doesn't help. Just take one day at a time and give it your best and you will do fine. That is all you can ask of yourself because your best is all you can give.
Most of the resources in medical journals seem to agree that the longevity of life, once a dx has been made is somewhere between 4-6 years. Women with EOAD seem to accelerate at a more moderate level than men. I would imagine factors such as existing health play into as indicators to consider. Each case is different and it is so true that if you have seen one case you have seen one case. Would be nice to have that crystal ball, Emily. . What we do differently, would we be able to know for sure? DW is 55 and has probably been battling this now for at least 5 years. Have been working with attorney's and they are of the mind that DW will qualify for assistance in residential care facility. .Know that that scenario is next journey to navigate. BEST to all of you. . .
My comment is this: I have had a terrible day with H falling and well, I will just leave it at that. I guess I can't totally delete my initial comment but it was not appropriate so I just hope no one reads the original comment which was based on really nothing. Sorry.
I agree with deb42657, but Anchor20 has a good point. We can wonder all we want, but we HAVE to take one day at a time & give it our best (VERY hard to do at times, but what choice do we have?)
I just don't think about it. I just do whatever needs doing. Better not to think about how long. We all know how this will end and hopefully by the time that end gets here it will be a blessing for them and us. After it is all over, we can once again reflect on the good times we had. When I get really down, I have a photo album and every picture in it had Lloyd. I just look at that and realize that this is all worth it and that I would not give up my life with him to avoid this.
I too found the initial diagnosis, acceptance, and observing family members and friends dissipate, the most difficult. I have come a long way since first posting here, thanks to all you, really. I thought I was going to go over the top back then.
A timeline, yes, of course I would like to know. However, when I read comments from the ones with the * beside their name, then, I want him to hang on longer.
How wonderful, despite the pain each day, that you are all here. I love you so much, dare I say?
KY Caregiver, I have consulted with several elder law attys-the only way to shelter my money (I'm willing to spend all of his on his care) is to put it into irrevocable trusts and only have access to the interest, not the principal, Right now interest is very low no matter what investments you make. We have no children so there's no one I want to inherit the principal. What I want and need is access to both principal and interest on my money and not have Medicaid take any of it. No one has come up with a viable plan yet.
LFL...Don't know if this will help you, but if you put your money in an annuity that pays a monthly amount and interest for over a 5 year period or 10 years...whatever, I don't think it would affect much of your money because probably your dh wouldn't live that long....if your funds had to be used at all. You do get to keep a little over $100,000 of your funds and still qualify for medicaid.
I live in Ca. so it is a community property state. I had a house that was not part of community property and our attorney had that put into an irrevocable trust so that the rental income goes into that trust and it will not be part of the qualifications for Medicaid if and when I might need that for my dh. I'm sure the atty you consulted knows alot more then I do. I did like one thing our attorney did and that was to have our wills state....Last to die distribution. There can be no distribution of our assets until we both are dead. I liked that because I could go first and who knows what would happen if my dh was still living and needed money for care. wouldn't and couldn't know what to do....we have an Trustee that will handle that if I should die first.
I needed to put all my retirement accounts into annuties that were designated liftime w/o beneficiary (monthly income for my lifetime only) and spend down my wife's retirement assets to $3,500. I could keep the house, one car and less than $100K. This made my wife eligible for medical assistance (Medicaid) in Minnesota. My monthly expense is her Social Security. Attorney handled it all including how to reduce assets appropriately and filed all applications. Financial planner and former employer facilitated the transfer of my assets to the best annuities for me (John Hancock).
I want to know also. But, my DW also has cancer and I am going to take her to her oncologist tomorrow. I consulted with our children, and we decided not to treat the cancer. No more chemo, etc. But, I sometimes wonder if that is the right decision. But, I also want to know How Long and the future scares me.
I have been reading the postings inre the recent passing of spouses and how the caregiver feels and I have to admit that it was difficult for me to do.
I sure admire and respect those who, it seems to me, are handling this better than I am.
The answer to the question is not there.....our loved ones are all individual.....their journey is their own.....therefore so is ours.....after 16 years.....the best I can do....and daily practice is "one day at a time"......one thing I do know though is I can "read" my Hubby very well, and he is definitely losing ground....needs to be fed, toiletted, dressed, walked around from place to place (due to his inability to follow instruction).....No one would wish "longeveity" on anyone afflicted with dementia.....as it is a robber of dignity and soul.......dreadful.....Dean....we as well have said, no interventions at this point........and yet I want to know how long?....and what happens, I worry when his passing finally does come......?
No one knows! Doctor said sixteen months ago "will not be long now". As of this week same doctor and hospice nurse say six months. I just take one day at a time and do my best. That's all any of us can do. Dh dx 2003 but symptoms as early as 97. Timeline? If it were that easy. Alz. Org. I think had article regarding stages and durations. I think it depends on other diseases that one has like diabetes and Parkinsons. When you find that crystal ball let me know. God Bless us all.
In the earlier stages I had a driving need to know as well. Now that we are in late stage.... even if they could tell me, I wouldn't want to know. Lynn is peaceful, happy and content. He enjoys his little world, laughs right out loud, tells me he is happy and smiles all the time. As long as he isn't suffering, I want to keep him with me forever. I love him as he is now and treasure every moment we have together.
Probably the "need to know" is stronger and more persistent depending on whether you feel like you're in a phase which is "sustainable" or not. Sustainable, as applied to your general state of mind, pysche, patience. Maybe the best catch-all terms we usually apply are "burnout," "cabin fever," etc. Yeah, I'm there. But...I get 3.5 days all to myself next week!!! And, I hope, can re-focus my perspective as part of my away assignment.
emily, to get back to your original question, I remember wanting a timeline too! Even when we knew he could go at any time with an event, i wanted to know if he didn't have an event, how long would/could he survive. And no one could even give an estimate. It is very frustrating to keep on keeping on, and you feel if you only knew a DATE that it would all be over, you could hang on until that date. It is the not knowing, and being tired, worn out, having difficulties managing his care, the house, the car, the bills, everything on your own and wondering is this going to be for 2 more years, 4 more years, 6 more years......
But, as we say over and over again, each individual is on a different timeline and there is just no way to tell. We who are here have seen that we seem to go in waves of losing our spice. Of the ones posting here, you still get a divergence of timelines. Some are close to 20 years, some 15, some 10...but most are 5-7 years after diagnosis. It depends on so many factors and their overall state of health when they are diagnosed. Some have it for 10 years prior to getting the diagnosis.
This is all to say, prepare for the long haul, and yet be ready for the short term too. Just make certain all legal matters have been taken care of, and that all financial matters are in your hands. Make sure that you get plenty of respite and take good care of yourself. Try not to lose your survival instincts. And come here often to rant and rave....where you are understood and loved.
Emily, Yes I to have a 4 day vacation or respite starting Sunday. My first in two yrs. Im going to Las vegas, but still concerned about DH. I do so want whatever time he has wheathe 2 or 20 yrs to be as positive as can be, I dont want him to feel like a burden. it is really a balancing act, to try to keep myself and keep my DH in positive moods.I know some of you are having far more dificulties than I am at this point and may GOD BLESS EACH OF YOU.
Emily, burnout is the perfect word. When you are at the end of your rope, you can't help but wonder how much rope will be left to keep tying those knots to hang on. Stress is the most important factor in the equation I would think. When I was having all those TIA's, you can bet I was wondering how much longer either of us would last. Though late stage has it's own heartache, it is much "easier" than the middle stages for me. That is due to me having my stress load relieved, and Lynn finding peace. Not perfect, but life is way better than it once was.
One day I think my dh probably has at least a couple of years. Other days I think it maybe less then a year. All the time I know that he could last long after I am gone and that is my worse fear since he has no one to care for him if something happens to me. Hate to say it, but it drives me crazy.
The neuro that dx my dh in 2007 that we had before we moved was so wonderful to just talk to me because he probably saw how stressed I was. Our last visit to him before we moved in April, 2010 he told me he thought I maybe had two years to look for a ALF ....well he probably came pretty close to being right. The new neuro told me just a couple of weeks ago I should start looking now....he said it was better to be prepared.
I hope you have a wonderful time! You are so careful and considerate; everything will be okay at home.
I remember when I would go off to workshops for 3 or 4 days, or to visit parents, and H would go for up to a week or 10 days for conferences or to visit family members. I loved getting away and I also loved it when he was away.
I so much need a timeline! It is because of finances and also my emotional health. I'm sure they tie in to each other as well. What I can afford for H, regardless of what he decides regarding home care, (me leaving if he opts for 24 hour care here), or what N and I prefer, ALF by the later part of this year- I can reasonably do for a few months or a couple of years, but not 20 years!
I remember that it is on another thread and I can't remember which poster to credit- but get me on that boat to Oregon- with the additions that poster specified.
tom, I remember your story and did not realize you needed to spend down that much. dean, you are in my prayers.