How long have you been a caregiver?

ghphotog

How long have you been a full-time caregiver and how do you know you were at the end of this struggle?

Ed1937

I was a caregiver for 4 years and 4 months before my wife unexpectedly passed from an unrelated condition. Probably the first 3 years were fairly easy.

MaryG123

Early days for me, just four months since I realized and accepted that I no longer have a partner.  I’m grieving even though he’s still my DH.

A. Marie

In hindsight, I was a caregiver (though I didn't realize it) from about 2011, when DH first began showing cognitive symptoms. I really had to step up to the plate in late 2015, and I took over the car keys in 2017 (by mutual consent, after DH got terrifyingly lost on his way to our long-time dentist). Formal diagnosis happened in 2018; I arranged for home care aides in late 2019; and I placed him in a skilled-nursing facility in June 2021. So, unfortunately, this can go on for a while--and I still have no clue to how much longer it will go on. My best wishes to you and to everyone else in this leaky boat.

JJAz

My husband was diagnosed with Alzheimer's in 2012, diagnosed with Lewy Body Dementia in 2017 and died in 2019, so my journey was not extended.  Answering your question, how to you know when you're near the end?  Stage 7 (for those patients who don't die of another problem earlier) is the final point in the disease.  You can read about it here

https://www.health.com/condition/alzheimers/how-alzheimers-disease-progresses

DJnAZ

The short answer is I have been my wife's caregiver for over three years.

I noticed in mid 2019 she seemed detached and just wasn't herself. When the pandemic hit in 2020 that seemed to really trigger her and it was then obvious to anyone that she had cognitive problems. Our primary care doctor diagnosed her with Mild Cognitive Impairment.

We had to put down our 17-year old dog the day before Thanksgiving 2020 and it was as if my wife fell off the cognitive cliff. She was diagnosed in 2021 with dementia and global aphasia and placed in memory care May 2022.

 Although I still do all I can to care for her, l lost my best friend several years ago.

60 falcon

My wife began having noticable symptoms in 2015.  Seven years, though the first two or three were so much easier than the last couple of years. She recently died at end of August. I was able to keep her home for all but the last 28 days of her life, which she spent in the hospital. She went from walking, talking, and feeding herself to being bed bound and needing to be hand fed overnight. Stage seven was short for her.

toolbeltexpert

I will say 12 years. I started setting up scaffolding a little at a time, here and there, we stopped doing major activities. Last long distance trip was 5 years ago. 5 years ago I took the driving over after she got lost. My dw had no diagnosis till July this year, mci dementia. A month later Alzheimers dx. Slums score of 18 a month later score of 12, a month later a bims score of 6. Not gonna allow any more testing, it isn't necessary. She went from geripsych to a skilled nursing, now in mc. That will be home for her if I can make it happen. This has been a very trying year for us both, but this could go 10 more years this is true slow progression Alzheimers. She still knows me and close folks from church, but not the ones who have passed, she still asks how they are doing. Her sister will visit in 2 weeks and I am hoping that will go well. Everyone is so different and yet the same. When I was visiting as a pastor where my dw is placed, I saw the same variety of progressions. There are still 3 residents there who have been there 7 or 8 years and I watched one feeding herself today but she has no vocabulary is well chair bound although she still stands up at times. One is needing everything but can still communicate and will try to following when someone is singing, the third one still walks with a walker is incontinent. the  staff does a great job keeping her toileted so she does have many accidents. That is just amazing for all three when you factor in the last few years.. so that is why I plan for the Long haul, if my dw journey isn't shortened by some major event.

Stewart

Rick4407

Hello GH.  My DW was dx in the fall of 2016.  Some signs before that but nothing major.  In 2018 delusions started.  She is now in the last of stage 6.  She's losing vocabulary, so stage 7 is not too far away.   It's a "one day at a time" journey.  I keep track of where she is in the progression and watch for what will be the next loss so I can prepare.  

While I plan to keep her at home through the end, I recognize that may not happen.  It's quite literally a one day at a time existence.  I don't worry about how long or how much is left.  

Good luck, Rick  

Arrowhead

My wife was diagnosed in June 2016. 

I was able to keep working until December 2018.

That’s when I retired to begin caring for her 24/7.

I’m not at the end yet; She's in stage 6, so I estimate a couple of more years.

ghphotog

I've read all of the replies and we have similar stories and I appreciate the honest respones.

One thing I know is I'm not the same person coming out as I was going in. In some ways better, in some ways worse. I still have a long trip ahead and it will be interesting to see who I'll be when it's all said and done. If I make it that far.

John_inFlorida

Its been a little over 10 years for me. Little by little me taking on more and more of the day to day things. I retired early partly due do this. In hind sight I really miss working and hate the isolation. But not sure what else I could have done. I don't think it would be good to leave her alone for any long period of time

nancyj194

Hi ghphotog, the official diagnosis was made in 2017. I knew from the early 2000's that there was something wrong. DH retired in 1999 at the age of 60, because he could no longer do CAD (computer aided design) for his engineering position.  We are moving into the beginning of stage 6. I am the sole caretaker for now. We have long term care insurance, but I am still capable of doing most everything in our daily lives. 

N

ghphotog

Myself, pretty much fulltime I guess since about 2019.
Saw subtle signs years before about 5 years ago when she started having problems driving and sometimes getting lost, problems with dates, writing checks, paying bills, trouble figuring out how to pay for groceries in the check out line, etc. . . Slowly I started taking over everything she used to do. She tries to help and wants to help but really can't do that much but I let her help the best she can and thank her afterwards.

I still leave her alone for a few hours several days a week while I work or try to get a little golf in. My last day of golf is coming up and I know it, so I try to play all I can now. I have to leave her alone a few hours while I do that, risky I know, but I have ways to check on her frequently and can run home at the first sign of trouble.
I've always been the type that needs my own space from time to time to see that slipping away is very hard for me.

Hope that doesn't sound selfish.

Judi57

For me, it will be 5 years this coming December 4.  I remember the day clearly as his doctor pulled me out into the hall from his hospital room and told me what she suspected.  It's been a whirlwind with all the personal aides coming and going, but we've managed.  I had noticed subtle changes before--the most profound was the gait disturbances early in his diagnosis.  This was quickly followed by driving difficulties and lots of other executive function malfunction.

Jane4Paul

I'm new to sharing with others in relationship with someone with dementia.  

My DH is a very smart well educated man but has always been reticent with most other people. We have been married 53 years. I have known some thing wasn't right for more than 3 years. About 2 years ago we got him to a geriatric center and diagnosis of mild cognitive disorder,progressed to early stage Alzheimers.  In September PETscan inicated amyloid plaque.  He continues to insist and apparently believe that he has  no problem. 

He has always been very kind. But now he insists that there is nothing I  do for him, or that he formerly did, that he couldn't perfectly well do himself.  I have some physical disabilities myself and depend on my DH for some kinds of assistance.

My  emotions are especially triggered by behaviors he has had for years but now have become more extreme, such as hoarding.

Ed1937

Jane, welcome to the forum. This is a good one where you will get understanding and help when you need it. Here is a link that might be helpful. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

Joe C.

This is an interesting topic for me as I sometimes wonder what was the “line” that was crossed when I became a caregiver. Was it when I had to take the check book? When I had to take over the cooking? When she stopped driving? When I had to stop working because she could not be alone? When I began dressing, bathing, toileting responsibility? Looking back I can see things I needed to “help with” as far back as 2011 but it was not till 2013 I admitted to myself there was something going wrong. From there it has been a continuous but gradual decline. So I wonder where in this timeline did I become a “caregiver”?

ghphotog

The stories are all so familiar and heartbreaking.
Thank you everyone for sharing! The struggle is real.

JudyMorrowMaloney

I have been a caregiver for 8 years. Too long. I want my life back

jane8851

I was my DH caregiver for three years when he was in the last stages of Alzheimer's. He had the rapidly progressing kind. I took care of him until he had grand mal seizures, went to the hospital, and was transferred to a nursing home. He was only there for 2 weeks when he caught covid from the staff and died.

Lgw

I agree. The hardest part is realizing I no longer have my partner. It may look like him but he is gone. It is one very long grieving process.

Lgw

I know the feeling. I just want to scream.

trm

My spouse was diagnosed in 2019 but, looking back, probably has had this horrible disease since 2016.  I think we are nearing the end of stage 6.  Honestly, some days, I feel like this will kill me before her.  She is angry all the time.  In so many ways, she hates me.  It is like a carnival ride that never ends.  I work at home full time, but it isn't easy.  I am trying another Caregiver a couple of times next week.  The 2nd Caregiver had personal issues and quit.  Bringing in a new person is hard.  Every day brings challenges.  She wants to do laundry but takes the clothes out mid-cycle, and they are soaking wet.  She is reactive to me when I make sure her meds are correct.  I try so many ways to be inclusive such as taking over cooking but getting her to help.  I have learned that it doesn't matter how or what I do to improve things. So, I am trying to adopt the Serenity Prayer and take it a day at a time.  I do miss having a life.  However, I miss my best friend more.  I am exhausted most days.  I am trying to use this group more.  I started seeing a counselor.  I try to get out during the short window a Caregiver is here.  The Caregiver helps even though it is a painful battle.  Having even a little time eases the tension for me.

JDancer

So many of you wrote of feelings I share. That's why this forum is so helpful. Ther's something comforting (?) to hear others express what I'm feeling- the gray line denoting when "caregiving" begins, the loss of a partner, the exhaustion of doing everything...

One day I was talking to other caregivers and I decided that even if we aren't providing care 24/7, we're still caregivers 24/7. It never ends, until it does.

Lakhota

My wife’s Alz was turned on like a switch in Oct of 2011 and it wasn’t until Jan of 2012 that we received the actual diagnosis. Looking back there were little signs like getting lost forgetting her purse somewhere that were just thought to be things that happen. She was able to stay at home by herself for about a year and then a caregiver was brought in to stay with her during the day so I could still work. This was due to her constant calling me one day over 30 times (I don’t like anyone enough to talk to you 30 times in one day on the phone but I did for her) she was calling my work place I found out talking to the ladies there, and the last straw was when she called the police and told them that she was being thrown out of the house. 

I took over everything from her medication, house work, meals, groceries, bills, and house work. The first five years were a rodeo with her not liking me, not knowing who I was and wanting me out of the house, not liking the caregiver, getting lost twice when driving once almost leaving the state you name it I think we checked all of the boxes. In Dec. of 2016 I found her in a pool of urine and blood and we went to the hospital where it was found that she had a bladder infection and was septic due to a silent UTI. She was in the ICU for I think three days getting three pints of blood and two pints of plasma then a day or two off ICU then sent to therapy. She was in therapy for maybe two days when she turned jaundice so back to the hospital through the ER they couldn’t find out the cause of the jaundice and we couldn’t due a cat scan due to she would hold still. The decision was made to bring in hospice and then on Dec. 24th the nurse an I believe we watched her die the Dr came in and her O2 was only 13% and she had a faint heart beat we did nothing and she decided it wasn’t time to go. We went home on hospice on the 26th of Dec. ending all meds only comfort knowing the end would come soon. In late March she had a bowel movement and her color changed and I said we would be removed from hospice and we were. 

It is now almost six years since I brought her home she still takes no medicine and even her primary Dr says she is a anomaly. The last six years I would say were the easiest as she LIKES me, doesn’t fight me or the caregiver, and is sweet. She no longer calls me by my name but has told me that I am a nice man she is double incontinence and she can not have a conversation that makes sense. I would guess we are in stage six with anyone’s guess as to when it may come to an end. 

Crushed

I was a full time 24/7/365 caregiver for 7 years and a monitor of memory care in a facilty for the last 5 years

It sucks

PookieBlue

I’m new to this forum and am grateful to learn from all of the posts. I feel so overwhelmed and angry at how our dreams for a nice retirement have been turned upside down. I read these posts and know there are so many of you who have been struggling. It is comforting to know we are not alone. There are days that I can not hold back the tears watching my DH decline. He is probably in Stage 6, but I’m just learning about the stages so not sure. He used to do all the cooking, grocery shopping and maintain the vehicles. I worked full time as medical professional for 35 years and we had a carpet cleaning company that just the two of us did all the work. My DH retired at age 62. He is 77 now. I noticed some strange happenings with him probably about 10 years ago. The first was when he lost his checkbook and I found it a couple days later with the strawberries in the refrigerator. Then he started asking if the dogs were fed about 5 times a couple times a day. We have a 40 foot motor home and tow a jeep. In 2016, he didn’t get the jeep 4wd into neutral and we burned up the transmission costing $3500 to repair. He accidentally ran someone off the highway one time and I decided he should not be driving that rig any longer. I had driven it some and took it upon myself to learn everything I could about it. Now I single-handedly take us on 5 week trips to the Midwest 3600 miles total to visit grandkids and siblings. I have 6 sisters and 4 brothers and 4 grand children. My DH thinks he still drives because most things I do, his memory tells him he is doing. He hasn’t driven his sports cars in years, but we get into arguments when I talk about selling them. He always wants to help me do things, but he can’t stay on task and I end up doing everything anyway. Most of the time I am trying to make sure he is happy which requires me to keep my anger and frustration to myself. Sometimes I lose it and that never goes well, but I’m only human. This life is certainly not what I expected after after working 35 years for a nice retirement. I expect to keep caring for him at home for as long as it takes, but I don’t like the angry person I have become.

JDancer

Welcome, Pookieblue. Your situation sounds very much like my own and I share many of your frustrations. I hope you find this forum as helpful as I do. It's a good place to share, vent, ask questions and seek support.

Dio

PookieBlue wrote:

 Most of the time I am trying to make sure he is happy which requires me to keep my anger and frustration to myself. Sometimes I lose it and that never goes well, but I’m only human. This life is certainly not what I expected after after working 35 years for a nice retirement. I expect to keep caring for him at home for as long as it takes, but I don’t like the angry person I have become.

I could have written this; it so perfectly describes my feelings.

Ed1937

PookieBlue, welcome to the gang. Sorry you need to be here. I read your profile. You said he had a problem with alcohol. Do you tell his doctors about that? When people use too much alcohol, they become deficient in certain vitamins. When caught early enough, bringing the vitamin levels where they should be might be enough to take care of the problem. It sounds like your husband might be more progressed, but if that's the problem, it could help if the doctor is aware of it.

If you haven't seen a certified elder law attorney, it's way past time to do that. You need to talk to one as soon as possible. DO.NOT.WAIT!