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kay3

New member
Feb 5, 2024
6
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HI, I'm Kaye, I'm a live-in carer for my Mum who has moderate Alzheimers. I have no family support and few friends because I had to give up my job and friends in Sydney and move to a town up north when Dad died 3.5 years ago. I have bipolarism so the high levels of stress make me depressed. Mum has the arguing type of the disease. My brother sold off the assets we lived on, POA. Now we are doing it tough.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,281
0
south-east London
Hello @kay3 and welcome to Dementia Support Forum.

I am sorry you find yourself with no family support and few friends since giving up your job.

Caring for someone with dementia can be a very isolating experience but I am glad you have found us as you will find lots of support here - and hopefully, you will feel a little less alone.
 

rachl999

New member
Feb 7, 2024
4
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I am new to this forum, haven't accessed any other sources didn't realize they were out there. My dad is probably mod to late stage Alzheimer's. my mom is his care taker by choice but its so stressful and demanding. its very complicated. its taking a toll. I was trying to research medication to help my dad kind of relax. he has almost no cognitive function but is still ambulatory. he is so restless, confused, words are jumbled and don't make any sense. he just paces follows my mom around literally all day. there is a long back story but things have deteriorated and exacerbated over the past 2 weeks. he was on Aricept and Namenda, but its gotten too hard to make sure he gets them as refusal etc has started to intensify. I'm wondering if we were wrong to stop those. don't they just help possibly slow the progression? I was wondering do any anti anxiety meds help with the anxiety/restlessness/agitation. I've tried to research but so much conflicting information. his neurologist isn't much help. looking into better provider care. The environment hasn't changed, care taker not changed, I've researched all the things we can do to help decrease his anxiety /restlessness/agitation nothing really seems to be off in those areas. its so sad.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,588
0
Newcastle
Hi @rachl999 and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia. I am sorry to hear about your dad. I hope that now you have found us you'll feel supported by being amongst people who truly understand.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,258
0
Hello @rachl999 and welcome from me also. It is so sad when our loved ones are anxious and there seems to be nothing that we can do to help, you just feel so helpless. All i can suggest is that you get back to your dad's doctor and ask for a medication review to see if they can suggest something that might help.
 

Richard T

New member
Feb 3, 2024
6
0
I am new to this forum, haven't accessed any other sources didn't realize they were out there. My dad is probably mod to late stage Alzheimer's. my mom is his care taker by choice but its so stressful and demanding. its very complicated. its taking a toll. I was trying to research medication to help my dad kind of relax. he has almost no cognitive function but is still ambulatory. he is so restless, confused, words are jumbled and don't make any sense. he just paces follows my mom around literally all day. there is a long back story but things have deteriorated and exacerbated over the past 2 weeks. he was on Aricept and Namenda, but its gotten too hard to make sure he gets them as refusal etc has started to intensify. I'm wondering if we were wrong to stop those. don't they just help possibly slow the progression? I was wondering do any anti anxiety meds help with the anxiety/restlessness/agitation. I've tried to research but so much conflicting information. his neurologist isn't much help. looking into better provider care. The environment hasn't changed, care taker not changed, I've researched all the things we can do to help decrease his anxiety /restlessness/agitation nothing really seems to be off in those areas. its so sad.
Hi @rachl999, and welcome. I'm new here too. Regarding your dad's medication, Aricept (donepezil) and Namenda (memantine), was he taking them as pills or in another form? I was wondering if he's having difficulty swallowing, as often happens in advanced Alzheimer's disease. Donepezil can be administered via a transdermal patch, while memantine can be taken in liquid form, avoiding the need to swallow pills.
If he's finding it hard to swallow pills, that would explain his refusal, as it would've been causing him anxiety. Donepezil and memantine are widely regarded as two of the very few medications that can do anything at all meaningful for Alzheimer's patients. Don't beat yourself up over stopping the medication. If it's only been a few days since they were stopped, try to encourage him to take them, but don't force him to, obviously. If there's a time of day when he's more lucid, it might be worth trying then, rather than at a fixed time of day which might not be when he's at his best.
If it's been more than a week since he's taken them, it would be best to get medical advice before starting again.
In any event, it's definitely a good idea have him on the medication in a non-pill format. Memantine is likely to help with his behavioural issues. Donepezil may just help him feel a bit more like himself, but if he can take it in a way that doesn't cause him any distress, then it's worth continuing with it in my opinion.
As for anti-anxiety medication in advanced Alzheimer's patients, I think the picture is rather mixed as you've already seen. A doctor would (hopefully) know more than a layperson like me, or at have access to the best clinical guidance.
 

rachl999

New member
Feb 7, 2024
4
0
Hi @rachl999, and welcome. I'm new here too. Regarding your dad's medication, Aricept (donepezil) and Namenda (memantine), was he taking them as pills or in another form? I was wondering if he's having difficulty swallowing, as often happens in advanced Alzheimer's disease. Donepezil can be administered via a transdermal patch, while memantine can be taken in liquid form, avoiding the need to swallow pills.
If he's finding it hard to swallow pills, that would explain his refusal, as it would've been causing him anxiety. Donepezil and memantine are widely regarded as two of the very few medications that can do anything at all meaningful for Alzheimer's patients. Don't beat yourself up over stopping the medication. If it's only been a few days since they were stopped, try to encourage him to take them, but don't force him to, obviously. If there's a time of day when he's more lucid, it might be worth trying then, rather than at a fixed time of day which might not be when he's at his best.
If it's been more than a week since he's taken them, it would be best to get medical advice before starting again.
In any event, it's definitely a good idea have him on the medication in a non-pill format. Memantine is likely to help with his behavioural issues. Donepezil may just help him feel a bit more like himself, but if he can take it in a way that doesn't cause him any distress, then it's worth continuing with it in my opinion.
As for anti-anxiety medication in advanced Alzheimer's patients, I think the picture is rather mixed as you've already seen. A doctor would (hopefully) know more than a layperson like me, or at have access to the best clinical guidance.
 

rachl999

New member
Feb 7, 2024
4
0
HI, thank you. he has greatly progressed with behaviors. I get confused aren't those two just to help slow the process if possible? I get mixed information. I guess I was under the impression they don't help with the behaviors. I mom took him off under the supervision of his primary my moms request. We made an appointment with his neurologist for Thursday. I'm trying to get information and questions his neurologist isnt the most helpful. He is fine, just doesn't offer much support. trying to educate myself now I am involved in his care. I appreciate your reply. thank you.
 

rachl999

New member
Feb 7, 2024
4
0
Hello @rachl999 and welcome from me also. It is so sad when our loved ones are anxious and there seems to be nothing that we can do to help, you just feel so helpless. All i can suggest is that you get back to your dad's doctor and ask for a medication review to see if they can suggest something that might help.
 

Piecesofapril62

New member
Feb 10, 2024
3
0
Hello, I am here because I just googled this wondering about my own elderly mother. She is 83 and my Dad has been gone 1 year this March 2024. She keeps saying how fearful she gets living alone. I know she's got anxiety issues, but she also keeps saying she is hearing someone knock on her door very early in the mornings. This is most every night/morning she is hearing this. She talked to her nurse at her doctor's office and she was told this is common. I am not sure what to make of this? I don't think anyone is doing it but she says she hears it. She has peeked out and of course no one is there. I do get to the place where I get weary of hearing it, I hate to admit it. I call her often, sometimes multiple times a day even and we only live about 2 miles apart. I cannot go and sit with her every day, she is very excessively needy and she can also be very manipulative and controlling (narcissistic) as well. I am not sure what to make of this, is she really hearing this? Or believes she is? Or is it a form of gaining attention? (yes, she DOES things to get attention even if negative) Or could it be some form of dementia? We can't seem to get her to go to the doctor for help with this. Thank you.
 

Piecesofapril62

New member
Feb 10, 2024
3
0
I also wanted to add about the nuisance callers or unwanted calls. My mother stated the other day that her phone was ringing one time then it would stop. I am not certain and this could very well be happening, like a robocall, but I am wondering if this is another instance of her hearing things? I have been to her house and never experienced the things she is telling me about. I have not stayed the night with her, and I am not sure I could. I have anxiety disorder myself and being around her for very long, and especially at night would likely cause me to become unhinged, meaning panic attacks. She is extremely needy and has the need to talk all the time. She can't 'do' silence. Meaning she can't be content to just sit and read or quietly do individual activities when anyone is around her. She has to be constantly interracting and chatting and I can't do that. I have to be quiet and still (introvert). Anyway, she hears knocking at her door, she says, very early in the mornings or very late at night. She has also been hearing her phone ring one time then nothing. I told her it's likely robocalls, but now I am not sure. Reading these posts here has helped a lot because it explains what might be going on with her. Thank you.
 

Gosling

Volunteer Host
Aug 2, 2022
1,889
0
South West UK
Hello @Edith Vera and welcome from me also to this friendly and supportive forum. This is a great place to ask questions, seek information or to let off a bit of steam if you need to.
I am sorry to read of your husband's diagnosis. It's tough for sure being the main carer.
Do have a good look around the site. Members really do want to help, and you will always find understanding here too.
 

LROG

New member
Feb 11, 2024
3
0
Hi I am the dementia champion at work .I support people who have learning difficulties .
 

LROG

New member
Feb 11, 2024
3
0
Hi I am the dementia champion at work .I support people who have learning difficulties .
I am looking for advice on how I can be a champion for dementia and any ideas from others that may also do this role thank you in advance
 
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