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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” .

Dementia persons suffer from “sundowners” that occurs during the evening and get scared and disoriented. My husband was going thru that and his doctor prescribed an anti-anxiety to give him when needed giving him a half of the pill and it calms him. It is real and scary for them to go thru the evening hours and just want to hear voices and usually ours. I can’t imagine myself going thru that and especially being in a wheel chair where you are limited. I too retired end of 2019 to care for him. You also should have his hearing checked by an audiologist as I did and my husband did need hearing aids that were a huge help. Stay strong and take care of yourself too.
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Reply to LMarrero
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Lauryn: Imho, perhaps he is exhibiting sundowning. Also, it may be a good idea for a visit to an audiologist. Best wishes.
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Reply to Llamalover47
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Just a suggestion: does your partner have hearing aids? Wearing them can make loud talking or shouting very uncomfortable because of harsh feedback. If not, and you can’t afford them (they are ridiculously expensive), there are other, much more affordable in-ear amplifiers that may do the trick. And, he may appreciate the help with hearing. Wearing his hearing aids always lowers my husband’s voice.
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Reply to Carelyn73
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3 ideas:
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).
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Reply to Taarna
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Try to get some medication which may help with this problem. And no matter what he does and why, I would let him have it by shouting at the top of my lungs at him that you are sick and tired of the loud hollering and noise an it has to stop. Shock him and if possible, put him into another room and close the door. As to the money situation, why is he not placed via Medicaid. There are ways that you will be able to keep some funds and be safe. Do not tolerate this - LET HIM HAVE IT TO SHOCK HIM. Sometimes that works. Do not let him destroy you.
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Reply to Riley2166
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cwillie Oct 9, 2021
Your nasty advice about how to treat people with dementia is getting predictable Riley, all I can say is thank god you aren't anyone's caregiver.
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We were experiencing it with our loved one and yes sometimes sitting beside him or in the same room helped but we don't always have time to just stop and drop. This is our first week of testing. Hoping we are on to something with the help of my primary. What my primary did for dad after switching him over was placed him back on citalopram and increased the dosage from 10 to 20mg to give with breakfast (early as possible). He asked us to give Seroquel (generic) another try but only at 50mg with 1 5mg melatonin (optional) at bedtime or with supper. So now he is much calmer during the day and has been FINALLY sleeping all the way through the night until around 6 am but by then usually hubby and I are up. And yeah thankfully with those med changes, he can still help himself. Some that hospice had me try had him totally helpless.

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.
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Reply to answry
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Lauryn Nov 1, 2021
Thank you for you helpful suggestions. I will ask primary care doc. About citalopram. He sleep good at night thanks to Seroquel!
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You said "partner." Do you have legal claim to the assets as a wife or common law wife? If you do, you are allowed a certain amount of money to keep in savings without having to be impoverished, and it's a decent amount. They don't require the spouse to have to spend all their money down in order to get placement in a facility.
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Reply to Debstarr53
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Lauryn Nov 1, 2021
Unfortunately we are not married and according to an elder care lawyer I talked to despite 33 years together there is no protection in Virginia for a domestic partner when it comes to nursing home so it will all go to them….or must be ‘spent down.’
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You might want to speak with his doctor about calming medications. There are natural ones like melatonin. Melatonin has to be taken every day, it also can help with getting to sleep.
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Reply to NancyIS
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This may not be applicable. I used to run inpatient support groups on psychiatric units. At times dementia patients would come in, usually in between some long term placement or for medication management. They used to upset the other patients with some of their behavior. I would have them sit in on the groups and placed by me. I found frequently just holding their hand and stoking it during the group was very settling for them. Is this physically possible in your situation some of the time? I suspect they also liked being around people even if they didn't follow the conversation. Dementia must feel terribly isolating. Caring for a demented person is as well. Are there any elder daycare programs around you? That might be soothing for your husband. Some even provide transportation. Call the Office of Agency or its version in your area. You must be older as well; tell them you need some help with the situation and ask what is out there. Good luck; it sounds awfully difficult for you.
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Reply to Moxies
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Head phone , ear plugs .
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Reply to KNance72
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Repetitive vocalizations are just another part of dementia that you have to learn to roll with (unfortunately).
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 🤗
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Reply to cwillie
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Caring for someone with dementia is draining. It's no wonder that you don't have the energy to try to distract him.

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.
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Reply to againx100
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Agitated behavior late in the day is usually attributed to Sundowning when dementia is involved. I'm sorry you're going through this with your partner as it can take such a toll on you after a while. Once he's able to get your attention, can he tell you what he wants?

Here is an article from the Mayo Clinic about Sundowning with some tips to reduce the symptoms:

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511

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:

https://www.amazon.com/Richway-Amethyst-Mini-Mat-Infrared-BioMat/dp/B001FM2R30

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
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