Sleep

persevere · September 4

Briefly, my DW was diagnosed in 2019 and is well on her way into the journey. Non verbal (except jabbering all day long, assistance with everything, etc.). So we entered a new phase a few months ago of my DW not sleeping through the night. She has been on lexapro almost from the beginning and risperidone shortly thereafter. Aricept for the first couple years but really bad side effects and then nemenda which I just recently stopped because I really don't think it does anything and I think just slowing it down isn't making sense anymore. But her sleep patterns have changed (prior to stopping nemenda). The risperidone really used to do the trick but not anymore. She is up and down all through the night now. A lot of times she'll prop herself up on her elbow, look around, and jabber. Goes on constantly. Trips to the bathroom although half of them are unnecessary. Etc., Etc. Been experimenting some with the meds since they can have insomnia effects at some point. Trying melatonin too. Nothing is really working well. Any suggestions out there?

RetiredTeacher · September 4

DH has sleeping issues for several yrs, up down all night. He's currently on 150 mg trazadone which has helped but he still gets up a handful of times to use the bathroom.

SDianeL · September 5

It’s very common. There are many reasons like anxiety, their sleep cycle is affected by the dementia, etc. Talk to the doctor about something for sleep. The problem is getting the dose right so they are not a fall risk or become incontinent. A Geriatric Psychiatrist is the best type of doctor for medications for dementia. Some here have said they hired someone to care for their LO at night so their caregiver can get some sleep.

howhale · September 15

My dear wife went through a lengthy period of similar behavior in regards to constantly getting up and down overnight. Because she needed assistance, I also had to get up with each trip. If not getting up hourly to the bathroom, she would start talking or having a conversation on the "phone" (her hand held to her face). After trying a number of things and because she refused to take tablet or capsule meds, despite all our attempts to hide them (that is another whole story), hospice began Haldol injections. Starting with a low dose and increasing dosage and frequency. The Haldol did help significantly reduce the overnight trips and awake periods. After adjusting the dose and frequency it became an every two week injection by the nurse which my wife tolerated easily. Also, there is an oral form of the Haldol which might be easier if having someone give the injection is a problem.

persevere · September 24

Thanks Howhale. I'll look it up. We just saw our primary about this and he prescribed Temazepam. Just used it for the first time. So far so good. Just curious - I see you are using Hospice. I've spoken to them in the past and they even said they could qualify my wife for hospice. But it really didn't seem like there would be that much there given she is still very ambulatory and healthy physically. I'm curious how much you are getting out of it and what made you decide to start using them.

howhale · September 24

https://alzconnected.org/discussion/comment/254415#Comment_254415

My wife got to the point where she would no longer cooperate going to the doctor for appointments and has been refusing all her medications. She had become ever more fearful of going outside the home or even into selected rooms of the home. In conversation with her cardiologist and PCP when she refused to attend appointments, they both told me I needed to contact hospice. She was ambulatory and her basic vitals never deteriorated, even at the end. Hospice evaluated her and determined she qualified, even though I suspected she might not. The provided the haldol alternative to try to help her. They provided supplies which became ever more necessary. As it turned out, she was only under hospice care for about 7 months before i lost her but hospice was very helpful for me and her. At the point I brought hospice into our lives, I honestly felt in time she would get disqualified because she did not seem to be advancing fast enough to meet the criteria. Turns out the hospice nurses were far better calibrated than I. Having hospice on board was vital as her conditions began to change and rapidly. They had a perspective and knowledge of her and were able to provide support in many forms, from medicine to counseling. If your wife is still cooperative and compliant in regards to doctor visits and accepts her medications then it may be early for hospice but don't let things slip up on you too fast before you call in help. I had a hard time inviting hospice in as I saw it as my acknowledgement of the end for her and it was painful. In hindsight, it was the right move for us.

persevere · September 27

https://alzconnected.org/discussion/comment/254427#Comment_254427

Thanks Howhale. This is very useful!

Sleep

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