Husband has dementia plus OCD

Pat Slive

I hardly know where to start! My husband has a physical disability and has had symptoms of OCD (never officially diagnosed) for many years. The first signs of dementia started about ten years ago. I don't think it is Alzheimer's but three different providers have called it dementia (frontal-temporal or even Lewy body are most likely). Many of his "difficult" behaviors are very remeniscient of many years ago, when he used to be verbally and physically abusive—and this makes it harder for me to be objective about the current situation. Hindsight tells me that I should have left him years ago, but here we are. When he is his better self, I still half-way like him, so I want to do what is best for both us, but without subjugating my basic needs.

I might be able to continue putting up with the cognitive decline and his mood swings, but the sleep deprivation is reaching a critical point. I don't share a lot with other people but those who know me have expressed concern and urged me to start taking care of myself. He will sleep for 12 hours at a time, then be up for a day or more. He spends 99% of his time on the bed, lying diagonally with his papers spread all over. One night I took my pillow and joined the dog on the floor! He will only take his meds when he eats a meal, and for the past year or more, he tends to eat every other day. He used to insist on getting out of the house to walk (indoors) and take a car ride every other day, but now he rarely even looks out the windows.

Last winter I started discussing placement with our PCP—he is totally supportive. I might first consider home health aids, but without any sort of consistent routine, it seems impossible. Right now I am debating which alternative is better: to call 911 when he is angry and upset with himself, and hitting himself in the head (almost daily), or to proceed with scheduling my knee replacement surgery which would require him to stay somewhere at least for a few days. Either way, I would insist that he cannot return home. We are both in our mid-70's and I'm sure the sleep deprivation after so many years has already shortened my life span. The OCD fits in here because it is these behaviors that occupy his entire day or night, and when he goes to live somewhere else, I know his mood and behaviors will improve, possibly to the point where they might say he doesn't need to be there yet.

I talked myself out of pursuing placement for a while, knowing that he will continue to call me constantly and want me to continue to help with his daily "paperwork." And although that is true, I'm starting to think that half a solution —that includes a good night's sleep—would make it worthwhile.

Please share any thoughts and ideas. I'm willing to provide more details to anyone who is interested.

SDianeL

welcome. Sorry you are going through this. My husband was OCD. The problem is with dementia you don’t know if his current behavior is caused by the OCD or the progression of his dementia. I would focus more on the dementia. If your DH is not on medication, please speak to his doctor about anti psychotic meds or get a referral to a Geriatric Psychiatrist which is the best type of doctor to manage dementia meds. If your husband is sleeping for days, not eating or taking his meds, I would ask for a hospice evaluation. They will reevaluate him every 6 months. If you fear for your safety, call 911 and gave him taken to the hospital for a Geri Psyche evaluation. As for home care or a MC facility, you are right in being concerned about scheduling it. Many people with dementia require 24/7 care in late stages. In home care is very expensive and insurance doesn’t usually cover it. I would start looking for facilities and narrow to 3 and tour them by yourself. Do not discuss it with him. Get someone to stay with him while you go. If he is accepted to MC you do not have to take his calls. Let them go to voice mail and call him once a day. Many caregivers disappear the phones. If the facility needs you they will call. If you haven’t done so, meet with an Elder Care Attorney immediately to learn your options for long term care. Read the book “The 36 Hour Day” which was recommended by a nurse. Come here often for support or to vent.

Pat Slive

Thank you. Right now I'm really leaning toward 911 and a psych admission. I Did this once before, about a year ago. They kept him for four days before a psychiatrist came to see him. Told me he had mild dementia, probably Alzheimer's. They suggested a mood stabilizer—he agreed to take it, had one dose the last night he was there, then refused it after he got home and read more about it. If I send him in again, I will insist on a comprehensive evaluation, including an MRI. I've started searching for legal advice as I need to pursue POA, plus he has a Special Needs Trust, courtesy of his family, which may help or actually hinder placement. We have no family to help out, but fortunately I have a couple of good friends who listen and help to keep me sane.

You referred to your husband in the past tense. How are you doing?