Even on Seroquel the days and nights are so long. During the day I have to be ever vigilant. (We have sold our home and preparing to move soon). I live for the time at night when husband finally lets me guide him to bed. Then I settle down to watch tv or read, sometimes have a glass of wine. I often fall into a troubled sleep, listening for sounds from our bedroom telling me that he is up again for one or more of his many obsessive behaviors.

He will fall asleep, but wake several times through the night from about 10 until daylight. I doze off and on as he gets up again and again, sometimes readying himself by dressing, combing his hair, sometimes gathering up a few possessions, declaring his desire to "go home", or a dozen other reasons. I do not sleep in that bed because, despite every effort to restrict liquids in the afternoons, he resists and his incontinence, though I have a waterproof matress pad, and waterproof pads on top of the sheets, he still can soak the bed. We have a bedside commode which he does use about half the time. But his constant movements, bed-wetting and getting up have made it impossible for me to share that bed.

Last night was just one in a series of "last straws", knowing that the next last straw might be tonight. He made fists of his hands as I tried to guide him back to bed for the fifth time. He threatened to "punch me in the nose". My anger rose bitterly in my chest. I was diagnosed about 20 years ago with fibromyalgia, have a minor heart issue, Graves' disease, and blood pressures that, of late are running around 187/102. I am on three meds for that. I have two full hip replacements and a very painful ankle with plates and screws from a two year-old break of both bones. I take Tylenol combined with Motrin once or twice a day to help with the pain of that and the fibro, having kicked a four year Vicodin addiction. My days and nights are filled with the pain of those issues as well as the emotional pain of exhaustion.

My husband has become my torturer. My undying love for him no longer exists, only pity and frustration remain. I have almost no respite -only a grant to go to a support group or to travel to medical appointments for myself, though many are cancelled because I cannot afford the co-Pays. His daughter visits twice a month for three hours and she is good with him, but I then prepare lunch and dog-sit, as she works full time so feel she must bring them -two Aussies. One visit I asked if I could nap while she was here, "sure, she said", but less than an hour later there was a knock on the bedroom door indicating her need to go. We do have some better days and nights, but the exhaustion is unrelenting. And there is no light at the end of this dark tunnel. There is absolutely no money for his care outside the home. I hate feeling this way. He was good to me when I was recouping from surgeries, but that man no longer exists. So many tears, though I truly do make use of resources.

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She.. what a beautiful poem! Thank you for posting.. it really captures the heartbreak of dementia.

Thank you for sharing your poem. It is beautiful. Very beautiful

We have also turned most of our credit cards over to a good credit counseling company and they lowered all of the interest rates for us. I have paid off 4 of 9 so far, but we still have a lot on credit as we were forced, from time to time, to buy groceries and cleaning items on credit. Because John, though a veteran, does not qualify for any aid and assistance because he never served that one day required during any period of conflict-yet we got a 100% va loan on this house. Funny how they won't help us yet they are perfectly willing to let you go into debt on a home loan. But I did get some good info and suggestions from you Angels out there. I will make some "post move" plans as I will also need to find a support group and possibly a different primary care doc too. I keep telling myself that so many of you have more difficult challenges that I do and it must be horrible to be caring for someone you never had a decent relationship with. At least I have good memories - though sometime I think that is harder.

Look into respite care for a while or at the very least get evening help a few times a week . Im in more or less the same situation with my Mother . Thank goodness i have an aid 3 times a week . Thats when i try to catch up sleeping . But its not the same being able to KNOW you wont be disturbed . So we are seriously looking into over night help 2-3 nights a week . We might have to go hospice first . She probably qualifies with her various illnesses, 2 bad valves, copd , 24/7 o2 and dementia . Yep its a festival over here at night . A couple weeks ago she woke me at 4am to take the garbage out .. rolls eyes

Oh goodness She, you’ve given to the point of exhaustion and it’s time to think of yourself, health and well being.
Please consider placing your husband in a care home - whichever you can afford. If it’s SNF/NH so be it.
I can’t imagine how hard you have worked to keep him home and where he may want to be, but there is nothing wrong with finding somewhere where he will be supervised by people paid to be awake.
It’s time for you to relax at your own home with your space and no heavy lifting. You will burn out soon & he’ll still be here.
You’ve nothing to feel guilty about either.
Put a call into his PCP and bring him/her in the loop. Ask them for help with placement.
Best of luck to you!

She1934, what a beautiful poem and tribute to your husband and your love for him.

Very touching she1934.

"The Long Goodbye"
Verses written in years gone by,
Dubbed him "the silver fox"
Complete with salt and peppered locks,
So tanned and fit, with smiling eyes the blue of bluest skies.
Their twinkling filled with the driest wit
An amused yet quiet man,
So passion-filled;
Arms reaching 'round-
His love unending
Tenderness unbound.
Body strong, hearty-busy
Fixing, building
A mind so clear
Day so full,
Life embraced from dawn 'til dark
Sand and and sun, ever bright.
Lights now dimmed,
Hands now tremble in throes of confused repetition.
Eyes now dull,
Jaw gone slack,
Days and nights conditioned now to never knowing,
If or when the sun will rise on what once was-
Endless days and dark holes of sun-downing
Diminishing once stealthy hands,
Puttering now through each day in silent contemplation
of unknown pieces,
Once proud completed tasks, each creation shining-
Left to ponder no more
A life no longer resounding.
As each risen sun shares its warmth, the farewells follow -
Never to be greeted again.
Each goodbye marked with a void,
There is no time for grief.
Memories drift away each day
Hours and years disappearing.
Gone with the hours are faces.
No longer are they familiar,
Names are gone -
Each lost measure, each lifeline fades-
Waves washing away the footprints of a life,
Sands now smoothed, ripples long gone
The waves crash now,vbringing fears and tears
Missing years never here,
Yet hopes and possibilities linger
as goodbyes continue on,
Vanishing in sunset's glow,
As stars and moon shed welcoming light on this, a dimming soul,
Leaving behind salty tears and mementos,
Guilded "things" left to prove
This life now softly waning,
It's history silently stands
This long goodbye is met once more,
This life not truly lost,
A life that is safely carried,
No matter what the cost.
Goodbye my dear, goodbye my love
Goodbye my heart
And most
Of all I wish you peace.

Find a nursing home which will take him "Medicaid pending" who has a social worker who will help you with the application process.

"There is absolutely no money for his care outside the home."

What options have you investigated? (I can't remember ... are you in the US?)

I am so sorry She1934 for all you are going through right now. My mom was in your position trying to care for my Dad with dementia (along with me).. the stress of it was just too much for her and she eventually had a stroke .. a few years later she too has an Alzheimer's diagnosis.. a few years after that .. they are both in memory care. I don't want to scare you .. you are 10 years younger then my mom. The stress will get to you though!

It is just too much.. for anyone.. let alone someone going through the health issues you have now. You deserve happiness and a life.

I would like to hear your poem as well.. the long goodbye.

Please take care.. life is so unfair sometimes..


Please share your poem, the long goodbye. Would love to read it.

She1934, you are a heroine amongst us caregivers. And Polarbear is right. You need to back away. If he has even the potential for violence, you need to assign that the importance it deserves.

Also, we have amassed large credit card debt as well. I investigated a company called National Debt Relief and found them to be extremely helpful. They will negotiate with our debtors. We put about 1/4 of our income from Social Security in a separate account and they will make negotiated payments for us for about 18 months. They’ve even assigned us an attorney should a CC company decide to sue. Our credit is non-existent, but it would have been anyway.

Hubby needs to go some place. If he, in his awake and aware years, could come back and observe you and himself as he is today, do you think he’d say any differently?

Please come back and let us know how you are fairing. And also, when stepdaughter comes to visit with the fur grandkids, tell her you’ve made arrangements at a kennel you’ve researched and if she can’t bring them there before her visit, you will be happy to take them there for her.

I’m so in awe of what you’ve done in caring for you husband, what a terrific caregiver you’ve been for him! It’s also very clear that you cannot possibly continue things the way they are, your physical and emotional health simply can’t do it any longer. He needs more than a single person can provide and you need to be his advocate in finding it. When my mother required full time nursing home care it wasn’t long at all before she became a Medicaid recipient. It changed my fathers life very little. He lived in the same house, had the same car, his finances were the same. My mother’s SS check went toward her care, their second car was sold, but not much changed. She got very good care, it didn’t change because she required Medicaid. Please get that daughter or another person over and use the time to visit some places, ask the staff social worker or business office about starting the Medicaid process and gettting your husband moved. Blessings to you in this, hope you’ll get some needed rest soon

My deep appreciation to all of you for your comments. I know that I post here because of your emotional support. I am soon to be 74. And I never want anyone to think that I do not truly appreciate the care given to me during my various surgeries by this man -forgot to mention my spinal fusion due to a congenital and chronic lumbar sacral disc degeneration-but I am a lucky one -that issue has not been a problem until now when I need to assist him in and out of bed and off of the sofa. My worry, aside from the hope and desire to be a super grandma and great Grandma as those beautiful babies that have arrived, is to once again have a life beyond the walls of our home. I used to volunteer teach in our local continuation high school and loved that, as well as facilitating a fibro support group, was active in a poetry group. I wrote a poem titled "The Long Goodbye" chronicling this journey. But my energies are now limited to his needs. I am no martyr, really. At first it seemed just sad as I mourned the loss of the man that was, remembering how we used to joke about this very time when so many folks are forced to deal with dementia related issues, and going through photo albums filled with "what was".  Then came fear and frustration as he declined into the paranoid and angry behaviors and rarely knows who I am. Even that was ok because he thinks I am an evil and mean caregiver most of the time. It almost makes it easier. I am hoping to find a social worker who can help me to navigate the red tape of Medicaide and hope that our government does not rip that away. And now that we have sold our home, though we had lived here only three years, I need some legal assistance as to how handle the $19,000 that we will realize. That is all we will ever have between us and dire straits. We are in awful credit card debt now due to the many medical, dental bills, home repairs and vehicle repairs we have sustained this past 5 years, driving a 13 year old car that finally died, and I short weekend trip on our 25th anniversary. And so it goes. We are not living in poverty as so many elderly folks are, but we also did not "plan" as they say. Final arrangements are paid for. At least we did that. I just pray for more patience, a day at the ocean and yes-sleep!

She1934, kudos to you for taking care of your husband, but you now need to change the situation in order to get some rest. Your description of your husband and your lack of good sleep sounds a lot like my dad and me before I moved him into a memory care facility. Full-time caregiving (24 hours/365 days) is the equivalent of 4.5 full-time jobs and the stress and exhaustion from it are killers -- polarbear mentioned that 40% of caregivers die before the person for whom they are providing care and I've read that the 40% increases to 70% for caregivers who are 70 or older. -- I'm not yet 70, but it became increasingly clear that I was headed down that path. Caregiving is like a flight on a troubled airliner, you need to put on your own oxygen mask first so you can help those who can't do that for themselves.

One thing that I kept in mind while making the hard decision to move my dad into a memory care facility was what a long-time Alzheimer's support group facilitator told me, that he never knew anyone who, after placing their loved one in a facility, said that they had done that too soon. He had placed his own 65-year-old wife in a memory care facility after several years of care-giving, but only after their children told him that they didn't want to lose their dad in addition to losing their mom.

You said that "There is absolutely no money for his care outside the home." But, unless you or your husband gifted financial resources to someone within the past 5 years, then your state's Medicaid program most likely will pay for his care in a facility appropriate for his needs. Please call your local Senior or Aging office and/or your state Medicaid office today to find out what you need to do to start this process. Best wishes.

It sounds like his alzheimer's has long reached the point where he needs a nursing home or a memory care unit. Save yourself.

She1934 - I've 'seen' you around the forum, but did not know much about your situation. I'm so sorry that it is such a horrible one.

The way I see it, your husband (what's left of him) and his illness are LITERALLY KILLING YOU SLOWLY. Logically, if someone (regardless who) is trying to kill you, you have to protect yourself if you value your life at all. You don't want to be part of the 40% caregivers who die before their charges, do you?

So, if you follow my logics, then you have to back away, protect yourself. You need to hand over his care to someone else, his daughter, another relative, or even the state if no one else would take him. You won't be abandoning him, or breaking your vow at all. You look out for his interest and his care while trying to stay alive.

Please, value your health and your life. Give my suggestion serious consideration.

I am so sorry, She1934. What you are describing would break a young, healthy person. How you have managed to hold up this long with your own medical issues is amazing.

Good grief, the daughter and the dogs you have to dog-sit while she's there as if you don't already have enough to do... Sorry, but that's obnoxious. Is she so dense that you have to spell it out for her: "I am so sleep-deprived, dear stepdaughter, that I desperately need to rest while you visit with Dad. Please do not bring your dogs as I cannot take on the burden of their care, even during an afternoon visit. Thank you for understanding and for visiting Dad, etc., etc." 

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