How do I get some rest? I am so tired, it is hard to make good decisions...

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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.
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Thank you for sharing your poem. It is beautiful. Very beautiful
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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.
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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 ..as 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
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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!
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She1934, what a beautiful poem and tribute to your husband and your love for him.
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Very touching she1934.
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"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.
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Find a nursing home which will take him "Medicaid pending" who has a social worker who will help you with the application process.
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"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?)
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