As caregiver to my partner of 33 years who is now confined to a wheelchair (due to ataxia) and has dementia, I am having a hard time due to his habit of shouting “hey” and calling my name, over and over….usually more towards the evening time. Sometimes he can be distracted but not always. Sometimes I just don’t have the energy to try to distract him. He will do it when I am sitting right next to him….over and over and louder and louder.
We cannot afford a nursing home, as his savings are all I have as well. I have been doing this almost non stop since I retired in 2019.
When asked why he does it he will say he “wants my attention” .
idea #1 - have his hearing checked. He might need hearing aides and that is why he shouts.
idea #2 - he might be suffering from anxiety in the evenings. Talk with his doctor about starting a mild anti-anxiety medication.
idea #3 - Hire a sitter for a couple of evenings for a couple of hours, This person(s) can give him lots of attention in the evening (that you might not have energy to give).
This is the first week of the meds and we are all grateful. Before then we had started doing one melatonin during the day (spring valley brand gummy) and then since that was hit or miss we tried goodbye stress (Olly brand gummy) which seemed to do better than the melatonin by itself. So now my plan is that if the citalopram ever needs assistance during the day to keep trying the goodbye stress (one gummy).
I hope with help of his care team you can find a grateful medium.
My mom used to alternate between calling my name and asking "turn me over, could you turn me over please? please?". It didn't matter if I was right beside her or she was sitting in her chair so there was no need to help her turn in bed, that's just what came out when she was agitated or needed something she couldn't vocalize. Sometimes after playing 20 questions I could figure out what she really needed and she would be quiet for a while, sometimes I couldn't. The vocalizations decreased for a while after her doctor prescribed mirtazapine to help her sleep at night, but they eventually returned as her dementia progressed. Believe me I know how hard it can be to ignore and tune out 🤗
You may want to reconsider the financial side of this. You are putting yourself in a lot of physical and mental risk as his condition will only get worse over time.
Do you own a house? Maybe need to sell and get into subsidized housing that is sliding scale, as in you pay what they determine you can afford.
Are the savings joint? If so, I would think that half of it is his, half of it is yours.
Thinking like this is a big shift and may have you thinking NO WAY but try to think outside of the box and come up with creative solutions to help solve your problems.
2 years is a long time to provide care and live with someone who is declining. You need to take care of yourself too.
Here is an article from the Mayo Clinic about Sundowning with some tips to reduce the symptoms:
We have a poster here who swears up & down that a BioMat mini heating pad with Amethyst crystals took his mother from a lion to a teddy bear when she was most agitated with dementia & Sundowning. Here is a link:
They are very expensive BUT, there are places where you can rent one of these mats to see if it works for your partner. Go to Google & type in 'where can I rent a Biomat Mini in (your city)' See what comes up and go from there.
You can also talk to your partner's doctor about calming medication to use if his agitation increases or he becomes aggressive, which is common (unfortunately).
Wishing you the best of luck with a difficult situation