I care for my mother with dementia and Sundown Syndrome. It's a tough job. I'm exhausted and feel completely alone doing this. The primary care doctor is no help. My mom doesn't sleep much at all. She's up and down all night can't tell if it's day or night. I have clocks all over, her cellphone has the time, the TV has the time. I open her blinds during the day. I sleep about three hours a night. She fights her sleeping medication. I've asked him to up the mg or dosage instructions or change the medication or add something to it. She has no clue where she's at. She thinks that we have three houses that we move her around to to confuse her. She pees in the bed on purpose. She is really just very difficult, but I'm committed 100% to keeping her home for as long as possible. I just wish that getting help from doctors and insurance was easier. Does anyone else feel this way?
I care for my mother with dementia and Sundown Syndrome. It's a tough job. I'm exhausted and feel completely alone doing this. The primary care doctor
- Thread starter Brandilou744
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I'm sorry you're hardly getting any sleep, and yes lot's of people feel the same way "me aswell". For me it feels like somebody just dropped me off in the middle of nowhere,and I have to walk it slowly back to where I was before but the distance gets further and further. I also think you will have to keep phoning or reminding the doctor that things need doing i.e medication some doctors don't make it easy either.
This doctor wants to make pull my hair out and scream at the top of my lungs. When she first came home she was so out of it. She hit, scratched, punched, threw food against the walls. And worst she tried to rip the external fixatior bars out her leg several times. He told me to double a medication to keep her sleeping a lot bc she was a danger to herself and even in the hospital they had to keep her sedated for over a week. So when I call in to get a new refill to the pharmacy it was being filled way to early. I explained what happened and the pharmacist said to tell the doctor to adjust the dosing instructions so it makes sense why the medication is out already. Even though I have the conversation on her my chart with her doctor he refused to write a new prescription with the new instructions. We went a month and half in hell. Thank God I had home health coming and they helped me out as much as they could. I thought I was losing my sanity. I'm looking for a new doctor. I just cannot believe finding a doctor that understands dementia and sundowners is so difficult. I love my mom so much I want her home with me but at some point if my well being and mental health starts to really effect how I live with my husband as and effects how I can take care of my mom she will need to enter a rest home and I don't want that. Thanks for answering my post. And I hope your situation gets better or at least gets some what bearable. If you need an ear I'm here. I don't sleep much and I'm not sure where your located but I'm available if you need a friend. ❤️ Brandi
Hi Brandilou. The fact that you’re only getting 3 hours sleep speaks volumes. It sounds like your mom needs round-the-clock care, and round-the clock care can only safely be delivered by a series/team of people, all of whom are properly rested! One of the dementia specialist carers at my father’s care home once said something that sounded callous, but also thought-provoking: sometimes we have an “emotional need” to carry on trying to look after our relative single-handedly, but, at the end of the day we have to prioritise the relative’s need for safe care over our emotional need to do everything for them.
Hi @Brandilou744, if your mum moves into care, you won't be giving up your role as her primary carer, you'll just have a team to support you. Trying to survive on too little sleep is going to make you ill and that won't help your mum.
Hi I really feel for you mum has Vascular Dementia and is now in a CH she has literally had no sleep at night for several weeks they have had her on Trazodone and just increased her Promethazine to 50 mg but I know she’s safe and I am more rested when I see her. Take care
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