Re the SSDI--my husband was quickly approved (2 months) with a diagnosis of MCI, probable AD. Could you speak to his doctor and find out if this is the actual diagnosis? Alot apparently depends on how the doctor completes the forms, and the language that the doctors SSA sends the claimant to word their reports. I hired a consultant to help us with the claim and it was the best money I ever spent.
I took DH of statins two months ago with neuro's agreement. Dh was getting severe leg cramps with them anyway. I think it was the right choice. Neuro knows how we feel about life extension. DH and I had always agreed that it is cruel to let this disease go on beyond what is destiny.
MarilyninMD - I will check into it. That would sure take pressure off and provide a little more than his unemployment which will be ending in a month or two anyway.
Charlotte, I haven't done the social security disability thing, but if he can't work that is what it is intended for. They aren't as bad as they were in the day when they sent the refusal to my brother-in-law on the day he died because he "wasn't sick enough". My understanding is that if you get all of your paperwork in proper order they will pay you. Make sure that the doctor specifically states that he can no longer work at any kind of job. Not just the work he was doing, but any kind of job, because he can no longer learn a new job and/or remember what he needs to do in order to work. If he also is no longer able to drive because of his dementia, make sure that information is also provided. Because not being able to drive because of dementia is different than not being able to drive because of a physical disability.
Charlotte-What Starling said above is correct. SSA routinely turns people down the first time, and then they have to reapply and fight for an approval. The consultant told me the specific language to get from the doctor that said he could only do simple, repetitive tasks. This eliminated his old profession as well as most other jobs. If he had received a denial, we were prepared to present evidence of physical limitations that would prevent him from doing simple, repetive work--for example--a janitor. Fortunately, that wasn't necessary. You really should start the process asap, because benefits can be awarded retroactively, but only so far back. Also, he will have to wait 2 years from the entitlement date to qualify for Medicare.
About the fact that they pay retroactively, my daughter's friend's daughter just got 2 1/2 year's worth of payments because her father has finally been accepted for social security disability. His situation doesn't involve dementia, so the reasons he didn't get immediate payments do not apply. My next door neighbor got her approval the second time they tried. She does have dementia and they didn't provide all of the right paperwork the first time.
We heard back from the VA - the diagnosis from the neurologist here is amnesic MCI. The one in Vegas we didn't like and he diagnosed early onset alzheimer. We came north cause he didn't even seem to know squat about dementia.
DH has been on SS since his retirement in January 1989. He was diag with AD November 1987. Does anyone know if he is elligible for SSDI as well as his SS? If he is it would be helpful. Could use a bit more income.
Social Security Disabiolity is for those under retirement age, who cannot perform fulltime work for pay at a substantial level. SSI is an Insurance type program administered by Social Services to augment the Income of those whose Social Security or Social Security Disability income is below certain poverty level guidelines.
Social Security is of course for retirees.
NO DOUBLE DIPPING ALLOWED. However, there are times when a recipient can receive more under another's record.
A widow can draw under her own record or get a full check under her decased husband's record if it's higher--but not both. Just one example.
When someone on SSD reaches retirement age, the Social Security Administration automatically switchesw them over, at the same rate they are at.
If your husband applies for SSDI, a consultant or attorney could tell you which doctor's diagnosis would carry more weight. My guess would be the EOAD. If that's the case, you would just submit the name of the doctor that gave the EOAD diagnosis to SSA, and omit the other.
I cringe everytime I hear one of my relatives tell me he'll outlive us all! My husband is in a nursing home now, recovering from a fall this time. He still knows who I am. Just sits and can't remember what we talked about five minutes ago on the phone. I'm nine hundrend miles from him and he thinks I'm next door. Ii'm glad you found this sight....it has literally saved my life and sanity several times. Yes, I feel like I have another life to live, too. Ii'm much younger than miy husband. I don't want to wilt away with whatever energy and life I have left, either. Waiting. I wanted more than this and feel guilty saying that and wishing for the time when I'll be free. We DIDN"T have a good marriage.....We all share the same terrors here. I hope you have a good therapist that is familiar with this disease and the effects it has on family members. Antidepresants are a good thing, too.
Thank you, thank you all for voicing what I am afraid to. I don't know if I can watch him slowly over many years get worse. Because of his heart condition and diabetis the are surprised he is doing as well as he is. Yet they don't live him day after day. I know it will happen and I pray that it happens in his sleep, peacefully. I love him so, Iwould tke every bit of his illness if I could, but then he would become me (the caregiver) and i don't wish that on him either. No easy answers. He is moving slower and sleeping a lot more. i belive that his from the heart. He only has 10% of his heart working, ejection rate of about 18%. I want to keep him with me forever and at the same time I want him go sooner and peacefully. I am not good with words but again I thank you all for understanding, for knowing the shadow existence I live in.
MMarshall, it does get easier with time, i promise.. we will speak again down the road and you will see. not fun but we do what we have to -many of us travel this unpleasant road but we do it together and it makes it easier to tolerate..know we are going thru the same issues..divvi
My DH said tonight that he hopes he goes before he gets really bad. At 80 years old I doubt he will be here for another 20 years but who knows how long any of us have. I just hope I outlive him because there is no one else to take care of him.
I want to run away too. Sometimes I just want everything to end. It feels good to say that here, because if I say it to anyone else they get concerned I'm thinking about suicide - I'm not and I never would. I'm just so tired I don't think I can keep up with all I'm doing - for my husband and my sister. I need to do things for me, and there's no time. And, no, what I'm doing is not stuff anyone else can help with.
My DH is 85 and doing very well with the AD - and no other major health problems. But he tells me all the time, he hopes he goes first because there is no one else to care of him like I do. He is so sweet. I just hope this continues until the Lord calls him home.
Vickie, you are blessed he is 85yr and had a full life up til now before the AD. its halfway expected nowdays that super seniors have some type of dementia (but not always of course) there are so many young ones here barely at thier halfway point its just so hard to think they have to endure this journey so early in life before living it. i too hope your sweety can be with you as he is til the end. and i am sure nobody else would care for him as you!divvi
Thank you for your kind words, divvi. We have been married 36 years - best years of my life (I'm 69)-quite a big age difference, but he is the love of my life. We had such good times the last 30 years and did almost everything we wanted to do. My heart aches for the younger ones going through this.
I agree, Divvi and Vickie. We've been married for 53 years so I figure I can last a few more with him. Interestingly, MOST of the time he's actually sweeter than he's been in years.
briegull, we also have been married 53 years. He has always been easy going but seems even more loving and appreciative now. I dread this disease getting worse. If we could just stop it where it is.....
Vickie lots of older/younger marriages here. me too, my DH is 18yrs older than me, and also the love of my life...even now. just a younger version of himself..haha/
Mine was an assistant professor in the college where I was a student, and we married just before my senior year. This wasn't as frowned-upon as it is now; there were a lot of student-prof marriages. He taught math and I was an english major so he never was my teacher. Eleven years older. He's always seemed "older" than his age, and I've always seemed "younger" and the gap is really noticeable now. There's an old English (Irish? Scottish?) folksong that has the line "maids, when you're young never wed an old man.." I have always remembered that.
Yes, me too, and I'll tell you, this 85 yr old would kiss my feet if I let him. He's still sweet too but I'm scared to death of what might happen, because i've seen it when he's been on painkillers. I don't know that I have the intestenal fortitude that some here demonstrate daily. Our dear Joan is one, and there are many others who see the angry face of AD every day, or so. But getting back to old man's darling, unfortunately, at this point in the disease, it's turning into "old man's slave"
My favorite line to him with our 23 year age difference used to be "that was before my time". He would give me such a look. I was definitely his darling and turned in to slave. The good news is though that even with the way things have turned out with his ending up with AD, I don't regret the time I have spent with him.
Wow, so glad that other people feel the same way I do. I am 43, my DH just turned 56. Never been sick a day in his life until this. He still likes to take walks (albeit walking behind me, not beside me - in silence) and talks about needing to "take care of himself" physically, eat well (although he seems to like to just eat fruit and forgets to eat lunch most days if I am not here.) And, in the back of my mind, I think - why? I think sometimes the fact that he LOOKS great - makes it harder. People think he is fine because he looks good. Until he opens his mouth. Then they are like "what is wrong with him?" as he has trouble carrying on a conversation, asking questions, etc. I can't imagine living 20 years like this either... and the other day the word "albatross" popped in my mind, so glad someone else used that word too. Glad other people have these feelings - I feel so guilty when I feel them, but yet I want to have a life... this is not what I had planned for my 40s!
On another note: we got SSDI the first time. On the application I was VERY detailed on the questions; giving examples, etc. and I even sent in a copy of a greeting card my DH had written to me which was totally misspelled, words out of place, etc. Then I called EVERY week to check on the status. I think I finally just wore them down. So don't give up!! Bug the crap out of the SS office. Hey, it's OUR money that we paid into the system all these years...
Shannon - How do I say this? I am sorry that you have found your way here, but I want you to know there's someone out here that is where you are. I am 46; my DH is 51. Like your DH, my DH appears "good" - sometimes he even fools me! But not for long. :-( My DH doesn't talk much because he knows he is confused. His solution is to avoid talking. And, this is definitely not what I planned for my 40s or 50s or 60s. Actually, this was not part of any plan. I planned for us to live together until we were very old sitting on rocking chairs watching our great great grandchildren play and then die on the same day. Life intervened. The good news is that ... hmmm ... I am trying to think of the good news and I am tired and not as optimistic as usual ... oh yeah ... our DHs lived a long time as fully functioning, healthy men. We had a full life and we still have some time together. Sometimes it is hard to really believe that he is sick. He looks a lot like he always has. My DH has, however, gained a lot of weight (he loves pistachios and I can't bring myself to deprive him of that simple pleasure).
My DH finally got approved for Social Security Disability last October and received his first check in January. The Social Security payments help my DH feel like he is contributing again. For a little while, it lifted his spirits.
I have to go to sleep now, but will be looking for you on this site.
THANK YOU - You are a good detective. I couldn't find it. I was looking for it for Emily, who started a similar topic - Only one of those things I could say here. I wanted her to see how others share her thoughts.
At the retirement complex where we live there's a nursing home that occupies the entire second floor of the bldg. A 92-yr. old woman recently died after being there for 7 yrs. She did not recognize her husband for the last 4 years! This really frightened me and I just hope that most of us will not have this terrible disease drag on that long. I didn't even realize her husband wasn't a widower, as he lives in his own apartment in independent living. I shudder to think how much money this has cost him over the last 7 years.
Thanks for bringing this thread to the front page. It has been very interesting to read since my DH has taken a marked turn downward because of a recent move we made. However,iIt seems strange that the 20 year number is mentioned so much in this thread. I was under the impression from the things I have read that 8 years from DX was the average. Has this changed and I missed reading about the change??
It would be interesting have a poll on this site asking the following questions:
1. What age is your spouse? 2. What age was your spouse when first dx? 3. What stage is your spouse in now? 4. If you are no longer caring for your spouse in your home how long have they been in some facility? 5. How long did you know the dx before placement? 6. If you spouse has died how long was that from the first dx?
This talk of 20 years just seems so unreal to me since it seems the majority of people that are talked about on this site are 65 and over.
Judith, you must remember that it is the exception to go 20 years or more. Why? Who knows. Maybe the disease stops for a while or just really, really slows down. Maybe the diagnosis came very early. We just don't know why some go quickly and some seem to take an eternity.
With my FIL he was on no medications until 9 years ago when my MIL died and he went into the VA facility. They did have their tea time 4 times a day, she gave him ginkgo biloba, St John's Wart and vitamins. She also kept his mind active by drives, walks, doing woodwork, then just tracing pictures in coloring books. When he went into the VA they put him on multiple vitamins, D3, antidepressant, and Namenda. That was about 15 years into the disease - he could still feed himself, was still continent, but knew none of us and was unable to take care of his daily needs. He was also a runner - he could disappear in a minute. He was about 65 when diagnosed but probably was have symptoms earlier. Since it ran in his family I don't know if he even went to a doctor for diagnosis. It was just known.
My husband is 62. He was 58 when memory problems started showing up. When he was 60 I made him go to the doctor. He was moved last January from mild to moderate but I think mostly to get the VA to cover Namenda which turned out he can't take. I pray it goes fast, not drag on like his dad. I am hoping the 7-10 years will apply to him too. His younger sister was diagnosed at 55 but she was probably showing signs long before. We just called her a 'ditsy blond'. They are probably about in the same stage.
I cared for DH for 10 yrs after dx when he died. I personally knew a woman, a nurse, who cared for her DH for 20 yrs and I've heard of others. Yes, 7-8 yrs is an average after dx, but dx is not the beginning of the disease. By the time dx occurs, AD has been around for many years. Can you think of things that happened years before your DH was dx? I know my DH had it for years, decades, but it didn't come to a head until he was approaching 60. But once I knew, it cleared up a lot of his statements & actions that puzzled me and others over the years. So you are right, the average is 7-8 after dx, but if someone is dx at 55, they could live to 75, depends on when the disease began before dx and at this point, no one can accurately tell.
At times I have wondered if DH's difficult personality was a marker for AD all those years before we began to suspect something was 'wrong'. Looking back, far back, its really hard to pinpoint what changed to the degree that we began to wonder if he had had a stroke or a brain tumor or etc.. It was definitely something..we just didn't know WHAT. I think it began with his obvious mistakes in keeping ranch records..We excused it because he had always had secretarial help.. This was different and glaringly so. He was always angry but that wasn't different..his abilities were never the cause of problems..everyone and everything ELSE was blamed. That wasn't new either. During his career, he was regularly angry and disgruntled with anyone who was in authority over him. Not sure why I'm going on about this..but the idea of the 20 years..could actually be true. In this case, possibly. He was having trouble several years BEFORE we noticed problems enough to begin searching for help. It took five years to get a diagnosis and we are at a moderate stage now I think..Late 5/early 6, and its been five years SINCE diagnosis.
In retrospect, the first signs began about 6 yrs. ago with DH's first really angry meltdown. DX was last July and the neurologist pegged him as moderate AD. He was solidly in Stage 5 and now I'd say most of the Stage 6 symptoms except for incontinence (thank goodness!) and can still dress himself, take care of showering, personal hygeine.
I would say that my DH started forgetting things in 1995. It became more apparent to me when I retired in 99. He was not diagnosed until 2006. Before the AD diagnosis he was on Aricept for MCI. Bob retired at 53 in 1990. I think now that he was having problems in his high pressure job as a mid level manager in the evolving computer industry. To me 20 years seems realistic. He is now stage 5 with some stage 6 signs. He struggles for words and is confused with dressing. Sometimes he tries to put my clothes on. Luckily, they don't fit him.
My hb had a stroke when he was 48; he'll be 73 next month. He did get most of the physical use of his left side within months after therapy. In retrospect, mentally, it's been down hill since then. I took over most things he'd been doing at that time. Two years ago, his dl was taken away after failing the cognitive/range of motion exam, but he'd been having problems before then. I think he quit a couple jobs he had rather than be fired because of the paperwork required. He did study for and passed the realtor's license in CA, but only made a couple sales. Good talker, not good at paperwork. He doesn't do anything except wander around the house and stop to play the piano several times a day. Never had a hobby; never read for recreation; never enjoyed games. Can't use TV remote or make sense of telephone. Doesn't enjoy much on TV anymore. Can feed himself, but doesn't eat much. Only showers when I insist and get things ready. Same w/tooth brushing. He can dress himself (4 layers of shirts, 2 of slacks); sleeps in clothes even w/belt on. Not incontinent. Doesn't know names of children/grandchildren, but knows they're "family." Called me mother for the first time last week, but realized as soon as he said it, it wasn't right, but didn't know what word to use. Confabulates. I quit my part-time job because he can't be left alone. So, yes, 20 years ....Life in a nutshell; I'm tired.
We all "feel your pain" Zibby. Think back, all of you - were there any concussions? Or TBIs? What about serious anesthesia/surgery? Sometimes those can trigger something starting.
My AH had(6 mo.apart) 2 bad reactions to anesthesia.He was disoriented for 2 - 3 weeks each time. I've always thought this was the beginning of disease for him.The DR. said no, it was just stress,had to change doctors to get a DX.I keep thinking if he had been started on aricept and namenda sooner would things have slowed down.In the 2 yrs. he has been on them he has stayed steady.I do expect many years of caregiving.
I'll never know how long I've been Caregiving DH's VaD. We married in Aug.1974. In 1976 our PCP dx"d the small tremor in his habnds as "familial tremor." In March 1988, he had a breakdowbn. Dx'd as Schizo-Affective Disorder, and I officially becanme his Caregiver. In the early '90's he told his Psychiatrist he was haveig a lot of trouble remembering things. ThDr. gave him a 3 month starter kit of Aricept to try, with the comment that if it worked he had Alz, if not he didn't. All thge Aricept did was escalate the agitation and confusion and h e atped taking it. In 2005 he hd a drastic d4op in his electrolytes, for which he was treated, but the levels never came all the way back up to good levels. In Augist 2006 he entered the hospital for another electrolyte drop. Because of extended exposure to one of his psych meds, a false signal was causing the problem. In determining exatly what all they were dealing with and the best way to adjust his meds, a neuro-psch test was done. Before explaining the results to me, I was asked to "Tell me about his Stroe Histor." I responded, "What Stroke History?" The Dr. then filled me in on the results of his test. He said they could see 2 major Stroke scars in his brain, one of which was probably the underlying cause of his tremor. At that time he was finishing Stage 4 and beginning Stage 5 of Vascular Dementia. A mystery to me is how they admistered the tests to a learning disabled man who can neither read nor write, nor do math beyond the simplest adding and subtracting which does not require borrowing. He could not decipher the blueprint for a simple birdhouse. His MMSE they said was 11/30. His IQ was abysmal. I hve tables he builtm for special places--no blueprint. He built 3 birdhouses on his own from the blueprint after our daughter coached him on the first and helped on the second. I do not doubt his Dx. The scars are there. the TIAs have been happening, and Hospice has come aboard. I count my Caregiving days as starting with his Breakdown in March 1988. How long have I( been Caregiving VaD? I have no idea.