I saw the topic about "ages of the caregivers", and it made me wonder: how long have we all been caregivers? I'm at 7 1/2 years right now, but there were lots of changes at least five years before that. Anybody else want to share how long they have been a caregiver?
It has been 2 years since diagnosis but I have been making most all decisions since at least 2003. He always said he trusted me to make the right decision. I have handled the finances all 39 years of our marriage.
I was an on the job caregiver 5 years. My husband is 59, he started losing his memory at age 50. I placed him in March, however, I still consider myself a caregiver.
I count my caregiving as starting with his Mentsal Breakdown in March, 1988. Dx of the VaD came out of a med crisis and need for change in Aug.-Sept. 2006. Drs. proposed placeme t at his Discharge Planning meeting, but I said I felt it was best for him to be able to be home. I could no longer do it alone, but with help I could. He's still here. I have 11 hrs. in-home help for him per week; I finally qualify for 4 hrs. help for me--my own needs; and get 4 hours respite time per month. Adds up to 22 years 7 mos. total., 4 years 2-3 mos. VaD.
DH is solidly into Stage 6 , probably approaching mid-stage.
Started my caregiving job 7 years ago. Thankfully, he is still able to do a lot of things for himself, not incontinent, so I certainly don't have it as badly as a lot here. Especially, Carosi, who is my inspiration.
It can be hard to measure because, as some have noted, we tend to take it on in steps. I have been full-time driver, planner, organizer, hygiene prompter, etc...since about '07. But I began pulling finances under my umbrella and helping with many, many things as early as '05.
Very interesting post. Would be interesting for the contributors to also state what stage their spouse is at this time. I have been a full time caregiver since 2006. My dh is now in the moderate stage and is still very functional. However, I cannot leave him alone and he has declined in the past 6 months. He also has a heart condition and COPD. I can tell he cannot physically do the things he did a year ago without extereme exhaustion and he can't do much on his own because he can't follow directions or seem to do anything without help that requires more then one step.
Four years (will be 5 in January)....and my husband, 72, is in stage 7D, and also has COPD, sleep apnea, restless leg syndrome and has had a stroke, some mini strokes and TIAs, and has jerks on occasion as well. He can not even sit up by himself any more, much less feed himself or dress himself. His fingers are atrophying.
My husband was diagnosed in early 2007. He no longer drives, has short term memory loss but is still functional in most other areas. He stays home alone and can do light cooking & other cores he did before so I'd say he is in the mild stage.
3 yrs it hard to believe how time flies. I now have a home health aid that comes in 5 days a week for 4 hours to give me a break. That is mainly for me, doing everything gets to be a bit much. I was planning on going back to work, but the economy is not helping things. So I've started my own web based co. www.brazosarms.com
My husband was diagnosed about 10 years ago. I have been a 24/7 caregiver for the past 3 years. He's the artist, I'm the accountant, so the checkbook has been mine since the second year of our marriage so that has saved a few hassles.
Bob, are you located on the Brazos River? My sister lives on the Brazos north of Waco. We try to make it down there every year--but we may have made our last trip.
Diagnosed July '08. Depression Aug '06. Been a steady slide into a mature stage 6 but always some differences from anyone else's experience. She's 59 now. AD has never let up and no few months are like those before.
Continent with very occassional accidents in the early morning if I don't get there. No skills whatever. Still knows everyone. No speech beyond a simple single thing. Showers with help. Wouldn't think of a shower. Enjoying where she is to following me around to sitting in front of the TV all day within 6 months. Tying shoes and getting in and out of cars about the same. Stairs more challenging and a shuffle becoming more pronounced unless we go for a walk. Then normal including stairs.
Diagnosed in September 2008 but symptoms were first noted in 2007 after heart surgery. Looking back though, it probably started about 6 or 7 years ago, at least.
I consider my caregiving starting with when my husband stopped working and I noticed something was seriously wrong. It's been over 6 years. Today, his neuro said he considers that to be a long time, and he thinks the reason I'm holding up is that it has been more like 20/7 (instead of 24/7) due to daycare and in-home help.
DO's diagnosis was in 2004....so 6 years there. Then I took care of his various health needs after his brain injury since 1981. If you count that, it's a total of 29 years.
I started trying to get my dh to see a doctor in 1999...he did not go for me until 2002, when he was dx. So 11 years since I knew he had a problem...9 years since dx. I placed him a year ago, but still consider myself a caregiver. I see him every day and am very involved in his care and treatment. He is stage 7.
Moorsb and Lori...I live in a little dot in the Heart of Texas...Texas has lots of small dots :)
DH dx'd in July 08 at which time I quit working to help care for him, so 2 years. Hospital discharge planning in Nov 08 required FT live-in aide (due to my physical limitations and DH's aggression) so we've had help since Nov 08. DH dx'd with FTD at 58, now 60 and hovering in stage 5.
I have been a caregiver a lot longer than I thought I have been. He was dx 2 years ago but like Charlotte I have been making all the decisions in our marriage for a long time now and he has just not wanted to or not been able to for most of our marriage.
maria1528--I am so sorry for your loss. Long time or short, these diseases take too much away from us. Peace be with you as you mourn and then move on ito your AFTER.
Dh was diagnosed in November 2008, but I first noticed behavioural changes three years before that. He is 67. In the last few years the decline has been rapid, he is now stage 6. He still talks a little but seldom completes a sentence, vague and incoherent. Urinary incontinence. Trembling hands in the morning. Can still ride a bike (he has been riding all his life) but wants obsessively to take the main road into the city, so it is too dangerous. Very hard to keep him occupied, he will sometimes look at a magazine for half an hour, does enjoy restaurants, company, a few favorite TV programs, driving in the car. He goes to day care four days a week and that is my lifesaver (in addition to this site). If the day comes when day care can no longer cope with him, I think placement time will be quite near.
Dementia dx 7 years ago, Alzheimers dx about 3 1/2 years ago. (I have crs, so it's hard to remember exactly...feels like forever) Still somewhat functoinal, but I have live in help as I still work and he can't be left alone.
First saw neurologist in 1996; however, for several years before that I realized he was losing his memory. Finally had to give up four months ago and put him in the nursing part of the retirement home we live in. I am 80; we celebrated our 60th wedding anniversary in Sept. I visit him every day. He is at least in stage 6 1/2.
Noticed first symptoms in the Fall of 2001, diagnosed with EOAD in early 2005. My DEAR WIFE is now in late stage six. She is still at home with me but is on a waiting list to be place soon.
My husband was 54,( I was 47) when they first thought it was stress related to his job. A year later diagnosed as MCI, now at the age of 60 middle stage AD.
For us we are beginning year 11, my husband had the symptoms much before that but I think when speaking of years the charts start with the year of diagnosis.
I was caregiver for my first wife for 8 years and so far I have been caring for Kathryn for about 4 1/2. Kathryn was having problems and lost her job in 2006 and was diagnosed with EOAD in Sept 2008.
The mystery began in 2000, possibly 1999 but we began trying to find out 'what's wrong'..in 2000.. 5 years later a diagnosis BUT I cared plenty and provided care through what I called OZ, then a quadruple bypass and I thought Oh its 'just' vascular..then in 2005 the verdict and for a while it seemed incredulous..sometimes still does but have to say I've been involved providing care/ providing encouragement/ providing oversight now at the assisted living place . In other words.This issue has been on the front burner for 10 years in various ways....I'd have to look at the stages etc. to predict which stage 6 plus?? or maybe edging into 7? He doesn't remember doing things 20 minutes after we've returned from an outing. There are more physical limitations that seem to involve SEEING or interpreting what he sees..or I'm even wondering if he's losing his sight??but don't think so. If someone attempts to shake hands with him..he doesn't 'SEE' the hand.. He couldn't find the seatbelt in the car today..and earlier he was attempting to help catch our escaper dog that was in plain sight..but he was walking in another direction looking for it.. Well the question was how long.. I went off into floundering land.. Its been 10 years here.
Judy--he is probably not losing his sight--do a search for "agnosia". It is a symptom where the brain cannot identify what the eyes are seeing. If he is stage 6 or 7 he is most likely into that symptom bigtime. That alone really limits what my husband can do for himself.
I am pretty sure my DH doesn't recognize what he is looking at or for but I don't believe he is in stage 6. Sometimes when he is in the kitchen to make a cup of coffee he kind of looks around for a while as if he is trying to remember what he needs.
(I do that, too, Jean!!) I think mine husband's been changing over the last 11 years, but slowly at first; he was already retired and just reading and "doing math". The diagnosis wasn't until 4 years ago; he's now early Stage 7, I'd say. Bedridden but more because of a bum leg that pains him to walk than because of the alz. Happy.
My husband is 57 and I have been a caregiver for the past 3 years, however his problems started about 5 years ago. I think he is starting to enter Stage 6.
DH was diagnosed with LBD almost 3 yrs ago. Like others symptoms started several years ago but we both covered them up. Full time 100% care almost 2yrs now, only feeds self, can't walk or do any daily functions. Not sure of stage since LBD has different stages then ALZ. But, from the above entries, we may have a long time ahead of us. Don't know if that's good or bad.
Carol was started on Aricept I think in 1996 so that is about 14 yrs. I retired shortly thereafter and have been her caregiver ever since. She is stage 7++ and in a Alzheimer's Special Care unit at a wonderful nursing home. Since last January. I then went 4-14 nhrs per day but now I try to limit it to no more that 4 hrs. She still walks in a Merry Walker but is having more trouble with her eating. Now on pureed food, but ii is very tasty. She has become very mellow, content, peaceful and loves to give out her version of a hug. Staff comes over to her while she is walking for their hug. I am so glad the old anger and discontent has subsided.
I noticed my DH's decline as soon as he retired in 1999. He declined with the change of seasons. He now is entering stage 7 - cannot complete a thought and has trouble verbalizing. Still continent but I have to dress and undress him. DOes not recognize people but won't admit it.
marilyninMD it sounds as if your DH has visional agnosia, the same as my DH. That was the reason we had him dx in the first place, as I thought it was his sight that was causing his problems. The eye specialist said his eyes were perfect, but to see a physcologist ,as he thought something else was wrong with him. He now can't see anything much, can't read, see TV etc because of this visional agnosia. It is very frustrating as he can't follow any directions as his sight is so limited,can't ask him to pass anything because he can't see it, even if it is right in front of him! He is 72 and about mid stage, I'd say - it's hard to tell just what stage he's at, as things change all the time.