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Nothing Left In My Tank
Posted: Sunday, August 18, 2019 6:42 AM
Joined: 12/28/2018
Posts: 25

After 13 years of caring for my DH who has EOAD, I realize that I can no longer do it. I am exhausted beyond compare, emotionally drained and mentally capped out. As a normally "glass half full" kind of person, this stinking disease has wiped me out and I literally have not a drop left to give.

Up until these last 8 months, we've been able to maintain a routine at home that was manageable even with the work of getting him dressed, bathed, groomed, toilleted, fed, etc. and still working part time to maintain some income and medical insurance for our family. Somewhere along the line, hallucinations and delusions became part of our daily lives and, still, I was able to figure out how to make it work.  But, recently his inability to sleep for days at a time and paranoia have done me in. Yep, we've checked for UTI and are working with a Neurologist on new meds ... but nothing seems to work to settle him down. Tomorrow I am going to sign paperwork to place him in a private care home. My heart is broken but so is my body and my mind is not far behind.  As his advocate, I just need to remember that this will be the best care option for him.

He is 63 and I am 59.

Posted: Sunday, August 18, 2019 6:54 AM
Joined: 3/15/2018
Posts: 614

Oh EdiBug, I am so sorry. I feel the pain in your words. Please always remember you’ve given it your best. No regrets, no guilt. You will be better for him when you see him, than now as his emotionally and physically drained caretaker. You have to take care of yourself too. This is about both of you, not just him. You have many years of living in front of you. Your health matters. Now you can be his wife without the burden of nursing.
Posted: Sunday, August 18, 2019 6:56 AM
Joined: 2/2/2014
Posts: 6106

Been there, done that.  we are here for you We KNOW
Keep It 100
Posted: Sunday, August 18, 2019 7:26 AM
Joined: 2/26/2017
Posts: 581

You are most definitely doing the right thing, for both of you, and for all of your family. It does nobody any good to have this disease take you both. I deeply feel your pain and I’m sorry. I hope this brings you peace.
Posted: Sunday, August 18, 2019 7:28 AM
Joined: 11/4/2014
Posts: 392


I looked after my EOAD wife at home  for over 6 years.  Fortunately I'd opted for early retirement . My DW blew through the early stages in the space of 3 years.

I live in Canada with a different (not better, just different)   health care system.  In early February 2017 my Doctor was concerned about my health . I had had gone past the limit of my caregiver skills, and was a physical and mental wreck.   My Doctor  helped me wade through the bureaucracy, and place my DW in an excellent Long Term Care facility.  

DW's rate of  decline  stabilized/ plateaued for the first 18 months or so in L.T.C.  For awhile there I thought  "maybe I should have tried to keep her home a little longer ? "

Turned out that nasty old EOAD was just taking a break, and came back with a vengeance !!

My DW can't speak, or feed herself, she is now in a wheelchair, and her weight is dropping. We are firmly in stage 7...My gut feeling is that the end isn't too far away ??

EdiBug...13 years is a long time. You did your best, and gave it your  all . For what its worth , you did the right thing for both of you.  

I'm 65 my lovely bride of 46 years is 63...Yes.. we were just kids ourselves when we tied the knot...I visit regularly, and miss her everyday .

My advice : Catch up on your sleep, ( I think I slept for 3 days ). Get yourself into a routine . Work on your own health and well being.

Best of luck to you





Posted: Sunday, August 18, 2019 7:46 AM
Joined: 6/21/2019
Posts: 871


I don't know how you've done it.

I've cared for my wife at home for six years, and she has maybe a week to live.

If she had lasted 13 years, I don't know who'd be caring for her because I know I would've died from the stress years ago.

You have done more for a LO than is humanly possible without destroying oneself.

He needs the care of professionals now, and you need to rest and heal.

If you need professional help in healing, please get it.

Posted: Sunday, August 18, 2019 8:00 AM
Joined: 4/2/2018
Posts: 3711

What a long time for care giving! I don't know how you managed that long. As others have said, it's best for you, and certainly best for him. Never second guess your decision. Focus on getting yourself back to health. Thoughts and prayers coming for everyone going through a time like this.
Posted: Sunday, August 18, 2019 9:12 AM
Joined: 9/5/2017
Posts: 738

OMG, 13 years is so long.  You're doing what is best for you and him.  Hoping for the best.
Posted: Sunday, August 18, 2019 9:20 AM
Joined: 3/7/2012
Posts: 2631

Of course you have nothing left in your tank. 13 years as a caregiver has drained you of everything. It also has shown your love for your DH. You and only you know your limits. In making the decision for placement you are still showing your love - and that will not change. You will both have an adjustment to this, but very slowly you will accept your decision. 

Your my hero, 13 years. Wow.


Katy sue
Posted: Sunday, August 18, 2019 11:01 AM
Joined: 9/24/2016
Posts: 463

It’s never about how long a caregiver can go before placement. There is no clock. It is about knowing when it is time , when it is no longer sustainable as is. You are a brave, strong woman. And therefore, you will survive.
Posted: Sunday, August 18, 2019 11:32 AM
Joined: 3/28/2018
Posts: 307


I concur with all the words of support you are getting here.  We are all amazed that you have been doing it for 13 years...I don't even want to imagine being a caregiver for that long.

Posted: Sunday, August 18, 2019 4:52 PM
Joined: 2/8/2018
Posts: 93


13 years is admirable.  What devotion you’ve shown!  Let someone else be the caregiver now and you can become a wife again when you visit.  It won’t be easy, but you know it’s time.  Best of luck to you as you make this transition.


Posted: Sunday, August 18, 2019 5:20 PM
Joined: 2/1/2018
Posts: 102

So sorry that you've had to be on this long journey! Our hearts go out for you HERO!
Posted: Monday, August 19, 2019 12:32 AM
Joined: 5/7/2018
Posts: 437

I am so sorry you have endured this for so long, and it is also sad that it came on your LO so early. My DH was diagnosed at age 65, but there were early signs before then. Things have gotten worse since last fall. Before that, he was still pretty lucid most of the time. Now he is on an anti psychotic to control delusions and aggression. It has only been since 2016 for me, and I cannot imagine doing it for 13 years. It is time for you to have a life for yourself. You have gone beyond what many would do. Take care.
Posted: Monday, August 19, 2019 5:21 AM
Joined: 6/15/2016
Posts: 119

I join everyone in here feeling in awe of 13 years of caregiving.  The time has come for you to focus on you.  This caregiver role forces us to reach deep within to find the resources to just keep on going through everything.  Nothing stops for dementia..and it’s a lonely journey.

I’m glad you can just be his wife now.  Don’t fall into have my admiration for devotion.  Be good to yourself.  

Posted: Monday, August 19, 2019 12:33 PM
Joined: 12/28/2018
Posts: 25

Thank you all for your kind words of encouragement. If someone would have told me at the beginning that my role as caregiver would be this long, I don't think I would have believed them (and might have even laughed in their face!)  As it was, the doctors told us to expect a duration of 3-5 years and that was my mindset day-to-day. Just goes to show that the doctors really can't predict what path/duration dementia will take. The thing that did surprise me on this journey, was the level of responsibility and thought needed in making decisions on behalf of my husband.  Where before there was a joint discussion with him on the best path to take, it was really hard to weigh out the pros and cons without his input all on my own. 

I've come to realize lately that even the hard things we've had to deal with have helped to prepare my heart for what my head has known for a while. So, no I don't feel guilty regarding his placement but I do know we're not done yet and am mentally gearing up for this next transition. My Mom always said I am hard headed so I guess that comes in handy here!

My heart goes out to all you caregivers! Keep on posting, as I learn a lot every time I read.