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[Tigerlil]

Hello, my husband aged 73 is experiencing memory problems which came on acutely last autumn, he is also having odd shaking episodes we have had a number of investigations but no diagnosis as yet and now have to wait months for a memory clinic appointment. The whole thing has been a huge shock, he is not allowed to drive and he is in denial about what is going on, blaming me and judging my feelings. I have joined this group as I would like to feel more at ease which how I am responding, it's impossible to talk to him about how it is for me and this is adding to the pain and hurt and confusion what what is going on. He has previously been very healthy, hardly ever visited the doctor and very active for his 73 years. It's a second marriage for both of us and we only tied the knot just over 3 years ago.

 

[Cat27]

Hi. I am the full time carer for my 90 year old mum. She has been referred to the memory clinic. The memory nurse came to the house and asked loads of questions which didn’t go down well with mum she got quite angry. Next step is brain scan also not going down well. So she hasn’t been diagnosed yet and apparently it may take up to 6 months after the scan for her to see a doctor. Mums memory isn’t great but hey she’s 90 the thing with mum is she hallucinates. It usually starts around 3 in the afternoon but recently it has got worse. She also has very restless nights which I find worse for me. Can’t remember the last time I had a decent nights sleep. I too have had meltdowns with mum and feel so guilty afterwards I know she can’t help it. I’ve read some of the threads on here and it’s me everything is the same as what’s happening to us. I was thinking of sleeping in mums room but would that be a mistake.

@FrazzleCat welcome to TP

Does her GP & memory nurse know about the hallucinations? If not I’d tell them & ask about medication.

 

[Cat27]

Hello. My mother is 85. She has dementia and a number of other health issues. She has been inhospital for over 4 months and has deteriorated rapidy in that environment. The discharge team wants to send her to a nursing home. She has been assessed as needing continuing healthcare funding.

Welcome to TP @evitakat

I see you’ve already started your own thread & you're getting help.

 

[Cat27]

Hello, my husband aged 73 is experiencing memory problems which came on acutely last autumn, he is also having odd shaking episodes we have had a number of investigations but no diagnosis as yet and now have to wait months for a memory clinic appointment. The whole thing has been a huge shock, he is not allowed to drive and he is in denial about what is going on, blaming me and judging my feelings. I have joined this group as I would like to feel more at ease which how I am responding, it's impossible to talk to him about how it is for me and this is adding to the pain and hurt and confusion what what is going on. He has previously been very healthy, hardly ever visited the doctor and very active for his 73 years. It's a second marriage for both of us and we only tied the knot just over 3 years ago.

@Tigerlil
Welcome to TP

You may find this thread helpful https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Shedrech]

hello @FrazzleCat
welcome from me too
I agree that it would be wise to let your mum's GP and the memory clinic nurse know about your mum's hallucinations and unsettled night's - even before a diagnosis, there may be meds that will help her settle - and the medics need to have a full and up to date picture of what is happening with your mum to help with the diagnosis, which is as much about her behaviour and the changes in her as it is any of the tests undertaken
personally, I'd be wary of sleeping in your mum's room; it will set up a precedent that is difficult to draw back from - it is one way of keeping an eye on her, but that's probably what you'll do all night - you need your own space and to be able to relax - maybe try a baby monitor or an alarm mat by her bed that lets you know if she is out of bed or in real need of some help - and nap yourself if she does at any point in the day (it's tempting to use those times to get chores done, which is even more tiring)
it does sound as though your mum is sundowning, which is a term for the heightened confusion which may come with afternoon/evening drawing in - there aren't any easy solutions, maybe a quiet environment with not too much stimulation, quiet music or TV that is easy to watch (no news or dramas - maybe something like Blue Planet) and I used to spray lavender around the room (who knows if it really is soothing, but it smells pleasant enough)

 

[FrazzleCat]

@FrazzleCat welcome to TP

Does her GP & memory nurse know about the hallucinations? If not I’d tell them & ask about medication.

Yes that was the reason I took her to the doctor in the first place. The memory nurse wants her to have a scan before they will do anything. I asked the doctor at the time re meds she was very young and seemed unsure about anything. I suppose I need to shout out before they will listen to me.

 

[FrazzleCat]

hello @FrazzleCat
welcome from me too
I agree that it would be wise to let your mum's GP and the memory clinic nurse know about your mum's hallucinations and unsettled night's - even before a diagnosis, there may be meds that will help her settle - and the medics need to have a full and up to date picture of what is happening with your mum to help with the diagnosis, which is as much about her behaviour and the changes in her as it is any of the tests undertaken
personally, I'd be wary of sleeping in your mum's room; it will set up a precedent that is difficult to draw back from - it is one way of keeping an eye on her, but that's probably what you'll do all night - you need your own space and to be able to relax - maybe try a baby monitor or an alarm mat by her bed that lets you know if she is out of bed or in real need of some help - and nap yourself if she does at any point in the day (it's tempting to use those times to get chores done, which is even more tiring)
it does sound as though your mum is sundowning, which is a term for the heightened confusion which may come with afternoon/evening drawing in - there aren't any easy solutions, maybe a quiet environment with not too much stimulation, quiet music or TV that is easy to watch (no news or dramas - maybe something like Blue Planet) and I used to spray lavender around the room (who knows if it really is soothing, but it smells pleasant enough)

Mum is addicted to the news but you can see by her expression that it’s all overwhelming for her. I turn the tv to another channel turn my back and it’s back on the news. I’ll try to find a quieter channel she does love music it makes her happy.

 

[FrazzleCat]

hello @FrazzleCat
welcome from me too
I agree that it would be wise to let your mum's GP and the memory clinic nurse know about your mum's hallucinations and unsettled night's - even before a diagnosis, there may be meds that will help her settle - and the medics need to have a full and up to date picture of what is happening with your mum to help with the diagnosis, which is as much about her behaviour and the changes in her as it is any of the tests undertaken
personally, I'd be wary of sleeping in your mum's room; it will set up a precedent that is difficult to draw back from - it is one way of keeping an eye on her, but that's probably what you'll do all night - you need your own space and to be able to relax - maybe try a baby monitor or an alarm mat by her bed that lets you know if she is out of bed or in real need of some help - and nap yourself if she does at any point in the day (it's tempting to use those times to get chores done, which is even more tiring)
it does sound as though your mum is sundowning, which is a term for the heightened confusion which may come with afternoon/evening drawing in - there aren't any easy solutions, maybe a quiet environment with not too much stimulation, quiet music or TV that is easy to watch (no news or dramas - maybe something like Blue Planet) and I used to spray lavender around the room (who knows if it really is soothing, but it smells pleasant enough)

Thanks for making my heart listen to my head of course I shouldn’t sleep in the same room. I just felt so desperate mum has a habit of talking to herself. I thought stupidly that if I were in the same room I could calm her and maybe snatch sleep myself. I try to ignore it but not always easy. She has severe arthritis in her knee and sometimes can’t get herself off the toilet. So I have to get up to help her. I read this back and I th8nk oh woe is me. I sound pathetic but I have cried so much in the last 2 months I have days when all I do is cry. Unfortunately I am the only one caring for her. My son lives 2 hours away so can’t just pop round. I don’t have any friends here don’t come from here. Here I go again Mrs pathetic. Get off your backside I hear you say. Too late now can’t even leave the house for more than half hour. Sorry feel a bit better have let off some steam.

 

[Shedrech]

hi @FrazzleCat
glad to be of help
have you contacted your mum's Local Authority Adult Services for an assessment of her care needs? - this is not reliant on a diagnosis - from the brief info you give it sounds as though if you weren't with her, she would not be able to cope on her own so would be a vulnerable adult at risk of harm and as the LA have the duty of care they are responsible for her welfare and safety - she has a right to an assessment and a care package may then be put in place to support her, and you - it should not be all down to you
in fact if you are her main carer, you have a right to a carer's assessment too
you might also want to look into Attendance Allowance - it is not means tested and is awarded for need, not necessarily that care is being provided by others - the forms are available online
you are absolutely not pathetic and no-one here would dream of telling you to get off your backside: we're far too aware of what it is to be in your position - you need help, so contact Adult Services - and for sympathy and support, keep posting here

 

[Legal Alien]

Good day everyone and Happy New Year,

I have just joined Talking Points; it's reached that time. My mother is 83, she lives alone in a lovely town in the north of England. She has always been fiercely independent, has lived alone for decades now and quite happily so. She traveled a lot in her 50s, 60s, and well into her 70s. She is surrounded by good friends (many of them aging, of course). Our family, however, is small; my only sibling lives in Sweden and I live in New York State. Our father passed many years ago and their relationship ended decades before that.

I spent much of last year getting my mother diagnosed, from near and afar. It was, unfortunately, an 8-month process until we got the official diagnosis of mixed dementia (Alzheimers + Vascular Dementia) and on to Donepezil. During that time, she worsened, and sadly, has declined rapidly since starting the medication. We do at least have social services stopping in daily to administer the medication and check in on her.

My brother, who has visited regularly over recent months, and I, who am planning a lengthy visit in the next few weeks, are doing all that we can to ensure she is cared for and healthy as can be. We fear we may be at the point of needing to move her into more secure surroundings for her own well-being. I have a lot to think of at the start of this New Year and look forward to hearing good advice and recommendations (and support) from everyone else here. Based on what I have read so far, we are still at relatively early stages; some of you definitely have your hands completely full!

I am going to start a pertinent new thread as there are specific factors that concern us with our mother, so let me leave it here for now.

Thanks,

Legal Alien

 

[Shedrech]

hello @Legal Alien
a warm welcome to TP
it's not east being a distance carer - you and youf brother are doing well by your mum
it will be good for you to spend a while with her, both as a family visit and also to be able to see for yourself how thi bs stand with your mum
TP is a great place for sympathy and uxeful suggestions, so definitely get going with your own thread and share experiences

 

[JDET]

I have joined Talking Point as my mother in law has dementia but also a personality disorder which makes it very difficult to help her. She has carers in twice a day but refuses to let them do anything so that cleaning, shopping etc is down to us and as we live over 120 miles away and my husband is 72 and not himself in good health we could really do with discussing some of the issues that arise.

 

[Cat27]

I have joined Talking Point as my mother in law has dementia but also a personality disorder which makes it very difficult to help her. She has carers in twice a day but refuses to let them do anything so that cleaning, shopping etc is down to us and as we live over 120 miles away and my husband is 72 and not himself in good health we could really do with discussing some of the issues that arise.

Welcome to TP @JDET
Refusal of help & carers is sadly very common. You’ll get lots of help & support here.

 

[JDET]

Welcome to TP @JDET
Refusal of help & carers is sadly very common. You’ll get lots of help & support here.

Any suggestions as to how we can persuade her to change her clothes more often? Whenever we suggest it she says either that they don't need changing or she'll do it later. A while ago when she needed new ones, I had to pretend I was taking the old ones away to repair, buy clothes that were almost identical and pretend they were the same ones. Now she doesn't want to change them at all, and if we suggest she does, she gets very stroppy. My husband finds this very stressful.

 

[Cat27]

Any suggestions as to how we can persuade her to change her clothes more often? Whenever we suggest it she says either that they don't need changing or she'll do it later. A while ago when she needed new ones, I had to pretend I was taking the old ones away to repair, buy clothes that were almost identical and pretend they were the same ones. Now she doesn't want to change them at all, and if we suggest she does, she gets very stroppy. My husband finds this very stressful.

You may find this factsheet helpful https://www.alzheimers.org.uk/download/downloads/id/1794/factsheet_washing_and_bathing.pdf

Also you could start your own thread to get more responses.

 

[Rozzer67]

Hi...i have joined as really struggling with Mum (73) who was diagnosed in August last year with vascular dementia. Since November she has deteriorated quickly - GP agrees. She gets fixated on things such as medication and then it will be the radio playing repeats which it isn't. Hardly eating, lost a stone in 3 weeks. Also saying every day she is feeling sick. Has cyclizine but doesn't appear to be working. Also has end stage COPD and has home oxygen so when she gets distressed about her memory her breathing is affected. Social worker came and saw her just before Christmas... not very useful and advised her GP that mum was coping! GP advised him differently! Now looking to see if we can get some respite care but have no idea how we will pay for it which I have so much guilt and worry about.
On tbe plus side reading some of the threads here has already shown me how supportive people are which gives me a lift.

 

[LadyA]

Welcome, @Rozzer67 .
Maybe you'd like to start a thread of your own, where more people will see it and respond? Just go to the relevant section (eg "I care for a person with dementia")
https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ and click the blue "start new thread" button.

 

[Rozzer67]

Many thanks for the advice LadyA... I'll give it a try!

 

[LadyA]

Many thanks for the advice LadyA... I'll give it a try!

Don't forget to click "watch thread" so you will be alerted to any replies!

 

[SimoneLesleyOlivia42]

Hi, I’m here because we are in the middle of a crisis with my father in law. He has Alzheimer’s. Diagnosed about 3 months ago. He keeps accusing us of stealing from him. Today a Carer overheard him telling someone this on the telephone and brought it to my attention. Yesterday the District Nurse confirmed my suspicions that he’s made repeated accusations about us stealing from him during his recent hospitalisation. Luckily for us this is not the first time he’s down this -that sounds strange but what I mean is we have already been down this road once before, and were subjected to an investigation by Social Services. I rang a friend tonight because I was so upset at the accusations. She said I need to find a support group. She googled our situation, and only then did we learn how common this kind of accusation is. I was astounded, but strangely relieved, but also devastated to discover this is likely to keep happening. He has always had a fairly narcissistic behaviour pattern. I had no idea how common narcissism is amongst Alzheimer’s patients either. I think I have a very steep learning curve ahead of me. I’m utterly devastated by today’s accusations and his attitude afterwards. I did confront him about it, gently but firmly. We had a conversation. I took the precaution of recording it to protect myself, I also had the Carer present as a witness. I’m so confused as to how much if this behaviour is narcissism, how much is contrived, how much is down to Alzheimer’s. He’s always lived in a fantasy world with himself front and centre, now I appear to be one of the cast as we live with him as carers. I could type all night, but instead I’m going to read, read, read. I’ve realised I have to find out more about this so I can deal with his behaviour better.