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I am trying so hard to stay calm and positive, but most days I fail miserably, at least that is what I feel inside. As a young child I watched my mom be physically and mentally abused. My mother never able to stand up to my stepfather. That is what makes the all day every day symptoms my husband displays so hard to stomach, literally. To have to live every day holding my tongue, "lying" (therapeutically, of course), when we have always been open and honest, walking on eggshells, careful every minute about what I say, how I say it, trying to live in his head, smiling when I feel like screaming, getting mad sometimes and then feeling like garbage because I got angry. By the time he finally falls asleep at night the last thing I want to do is lie down beside him listening to the snoring, staying awake as he talks in his sleep, reaches for things on his night stand, turning the light on and off, peeing on the floor or in the bed, getting up at least 4 or 5 times wanting to eat, smoke or just being disoriented and confused. I just want to have a quiet glass of wine or take a lorazepam and forget the whole sad reality that has taken the man I loved away and left this angry shell in his place. I am sad, angry, depressed. There is no money at all to do anything but keep him at home and get through every hour as best we can. There are few and brief moments when the caring husband I had come to know makes an appearance and my heart leaps, only to be dropped into the abyss once more. When I see postings here asking for comments from caregivers who are experiencing positive caregiving with their loved one I cannot begin to imagine what that must be like, and I blame myself for my days and nights. I attend workshops and support groups and avail myself of every resource I can find. I get inspired and I meditate and I pray and I make resolutions to try harder, and I wake in the morning to the same angst of the day before.

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I am so sorry for what you and your family are going through. I briefly took care of my Mom in my own home for about six weeks, and I felt just like you describe now. I woke up with dread in the pit of my stomach each day, I can't imagine how hard it is to watch your spouse go through this. I think the others have made wonderful suggestions, I don't have enough experience to add anything, other then I have one friend who offered several times to sit with my Mom. I never took her up on it, mainly because Mom is now in a memory care home, but if you have any friends who offer, take them up on it.
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Dear She,

Blame and guilt are the most unproductive and self destructive emotions we can have. I’ve a masters degree in guilt! so I can tell you from experience. Don’t succumb to them, use logic to protect yourself from such deceiving feelings!

When resources are scarce we need to be creative and realistic. The reality tells you that you cannot keep going like this! The creative aspect should move you to find alternative help. For example, do you go to any particular church? Are there any people in your church that’d be willing to volunteer some hours to care for your husband? Same applies to friends, relatives, any volunteering organization? you need a daily break, even if not at night but some hours during the day. If you have kids they need to participate. Unbelievably, sometimes if we don’t ask, people won’t offer, even if the need for help is evident.

Don’t be ashamed to ask for help! And don’t close your world to the “there’s no help” dark hole. Think outside the box!

And about the abuse feeling, I completely get it. I get it from my mother some days more than others. Yet, you have to remember it’s not them! They are victims. Remind yourself of that 24/7..so it hurts less.

You’re being a loyal and devoted wife. May God bless you!
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I deeply appreciate every comment you have taken the time to write. I am in the process of trying to access the possibilities of financial hel suggested. Some days I feel nearly paralyzed, or just barely able to care for my husband's needs. I did not mention my own health issues, because I am trying to deal with them as best I can. Yes I do have a limited respite care grant and am using it to have a caregiver with my husband when I have to drive every other weekend to pick up my grandaughter and return her for visitations with us and her father who lives with us, but who is rarely here, due to his work, and cannot drive her. Those trips are long and arduous, but having her is such a joy. The laughter of this child, even for the 36 hours she is here, brings light to all concerned. And so I thank you for allowing me to be honest and I will continue to work on solutions as I can.
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"There is no money at all to do anything but keep him at home." Are you sure? Have you attended seminars on financial aspects of dementia? Have you consulted an attorney specializing in Elder Law? Have you asked for a needs assessment from Human Services? Don't come to a conclusion until you've turned over every stone.

An Adult Day Health Program would give you some respite. Medicaid pays for that, and some programs have "scholarships" to help out.
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Good suggestions Tothill
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My heart goes out to you.

Your feelings are your feelings, please do not feel blame or shame for them. Nobody else in in your exact situation.

Attending workshops and support groups is important, but so is trying to carve out time for that glass of wine, a walk in a park or along the shore. If possible do one small thing for yourself each week.

Is there anywhere else you can sleep? I realize you still need to attend to him during the night, but perhaps if you could sleep in another place, it may allow you a bit more rest.

Are there respite services in your community?
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She1934, I am so sorry you are in this situation. You are to be admired for doing the difficult job that you do. It's good that you are attending workshops and supports groups. Meditation and prayer are always good. I'm sure you do try hard to be patient through your days. Come here to vent or ask questions any time you need. There is always someone who can offer support and advice.
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