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