Dementia

[Fuji Dave]

The other week I had a very stressful phone call my 87 yr old mother saying some very hurting things about me straight out of the blue. Mum has been losing her memory for a year or so now plus she has forgotten her ATM pin number too and worse of all she forgot to switch off her gas oven one day when me and my GF went over. Mum said she could not smell anything at all, I have been in contact with my niece who is a nurse and we both think my mum might have dementia with Lewy Bodies. We have let her doctor know but mum still won`t go and see him for any tests as she just says It`s old age, every time I take the camera out I feel so guilty if I take a photo and it was the same today too no photos. It really is tearing me apart to see mum like this, but sadly I just don`t know what to do.

 

[admirable]

You need to get her down to the doctor or perhaps get the doctor to visit her? Do you have power of attorney?

 

[Marc]

I do know where you're coming from Dave. We've been going through similar with dad (he's 84). He's diabetic and, when mum had to go into hospital recently, he forgot to take his insulin. When we turned up, he was in a right state. He was diagnosed with early stage dementia last week, which means he and mum will get the support they need. This is why getting your mum to have the tests is so important but it must be difficult if she's unwilling. We were fortunate that dad was willing to go to the doctors and, when the diagnosis came, no-one was surprised, including dad.

Jim's post above is a very good suggestion.

 

[Fuji Dave]

You need to get her down to the doctor or perhaps get the doctor to visit her? Do you have power of attorney?

When my mum made her Will a few months ago, she then made me power of attorney in finance only and nothing to do with her medical needs at all.

 

[tijuana taxi]

My 88 year old mum had started getting very similar sounding symptoms.
I made an appointment to see her GP who was very helpful and understanding.
Began to consider possible sheltered housing and as Jim mentioned power of attorney is something you need to urgently consider.
Too easy for unscrupulous people to prey on the vulnerable elderly especially when they have dementia

In my case it all ended rather suddenly when my mum was run over and killed crossing the road on her mobility school
Nothing you do will be easy, but you need to act now, it won't go away and will only get worse as time goes on

 

[Fuji Dave]

Thank you folks, the very sad thing though is, mum will not go and see her doctor at all. She just says OH it`s old age, and when I try and talk to her about it she asks me to leave. Her doctor does know about it though as my niece who is a nurse had a talk to mums doctor who said yes we know but we can`t talk to you or family till mum writes a letter saying it`s fine. So we are really stumped what to do.

 

[admirable]

When my mum made her Will a few months ago, she then made me power of attorney in finance only and nothing to do with her medical needs at all.

Contact the lawyer who set it up for you and ask what's involved in adding medical, as it's only a few months ago it might not be too difficult or costly?

 

[Fuji Dave]

Contact the lawyer who set it up for you and ask what's involved in adding medical, as it's only a few months ago it might not be too difficult or costly?

I tried that, but the solicitor said she would have to speak to mum first, so no luck on that at the moment.

 

[admirable]

Thank you folks, the very sad thing though is, mum will not go and see her doctor at all. She just says OH it`s old age, and when I try and talk to her about it she asks me to leave. Her doctor does know about it though as my niece who is a nurse had a talk to mums doctor who said yes we know but we can`t talk to you or family till mum writes a letter saying it`s fine. So we are really stumped what to do.

Ask her if it's ok for you to contact the NHS and get yourself added onto her medical records as next of kin with full permission to communicate with you. Then if anything happens they will be able to talk to you. This also saves huge amounts of time if she needs to attend hospital for tests, check ups or treatment.

 

[Fuji Dave]

Ask her if it's ok for you to contact the NHS and get yourself added onto her medical records as next of kin with full permission to communicate with you. Then if anything happens they will be able to talk to you. This also saves huge amounts of time if she needs to attend hospital for tests, check ups or treatment.

I have tried everything even that what you said about the NHS, but it`s all a no go. It really feels as if mum has written me out of anything to do with her health, as all the people I have spoken too over the last week or so says sorry we need your mum to say Yes go on plus it`s the same answer to my niece and she is a nurse. It feels like mum has made sure we can`t do a thing about it but my niece is still looking at what can be done.

 

[Garry Edwards]

Power of attorney is essential, if it's not already too late - she must be capable of understanding that she is handing over control of her (financial and / or other) decisions. Otherwise, she may end up under the dubious "care" of the Court of Protection, which is both incredibly slow and expensive.

Perhaps it's better to avoid the use of the term "dementia" and to tell her that the doctor can refer her to the memory clinic, which is what the dementia clinic is now known as.

 

[Fuji Dave]

Power of attorney is essential, if it's not already too late - she must be capable of understanding that she is handing over control of her (financial and / or other) decisions. Otherwise, she may end up under the dubious "care" of the Court of Protection, which is both incredibly slow and expensive.

Perhaps it's better to avoid the use of the term "dementia" and to tell her that the doctor can refer her to the memory clinic, which is what the dementia clinic is now known as.

Her doctor made an appointment for mum to go and have a memory test, so I said I`d go with her but she phoned and cancelled it. When I asked her why she said she was scared.

 

[Garry Edwards]

Her doctor made an appointment for mum to go and have a memory test, so I said I`d go with her but she phoned and cancelled it. When I asked her why she said she was scared.

Well, it must be a scary thing for her to do, especially if she feels that she will gain nothing from it...
Why not tell her that they can help her with her memory if she has the test? It isn't completely untrue as they do have a range of medications that can sometimes help.

 

[munch]

Her doctor made an appointment for mum to go and have a memory test, so I said I`d go with her but she phoned and cancelled it. When I asked her why she said she was scared.

And that is the problem. If your mum can get away without a diagnosis she will. How do I know? I went through exactly the same with my mum. My mother lived in Suffolk and half way through one day when I was in Wrexham I got a call from mums home number, only it wasn't her, but the police saying they had picked up mum wandering in her nightdress and they couldn't leave her. They got her admitted to hospital and after that things changed for the better. Before that despite our concerns she wouldn't see the doctor.

Would it be possible for a doctor or one of the mental health team (don't tell your mum it is mental health though) to visit your mum at home. Speak to someone from dementia UK they may be able to help.

 

[Box Brownie]

Just a thought? Could Age Concern or those organisations in a similar niche have any counseling services that could help with aiding your mum's understanding and that there ultimately nothing to be afraid of???

 

[Fuji Dave]

Well, it must be a scary thing for her to do, especially if she feels that she will gain nothing from it...
Why not tell her that they can help her with her memory if she has the test? It isn't completely untrue as they do have a range of medications that can sometimes help.

It is one of those subjects that I have to be very careful when talking to mum about, as she has asked me to leave about 4 times now when I mention it.

 

[Fuji Dave]

And that is the problem. If your mum can get away without a diagnosis she will. How do I know? I went through exactly the same with my mum. My mother lived in Suffolk and half way through one day when I was in Wrexham I got a call from mums home number, only it wasn't her, but the police saying they had picked up mum wandering in her nightdress and they couldn't leave her. They got her admitted to hospital and after that things changed for the better. Before that despite our concerns she wouldn't see the doctor.

Would it be possible for a doctor or one of the mental health team (don't tell your mum it is mental health though) to visit your mum at home. Speak to someone from dementia UK they may be able to help.

That is what my niece is trying to sort out, as with her being a nurse she can put it across a lot better than me.

 

[Fuji Dave]

Just a thought? Could Age Concern or those organisations in a similar niche have any counseling services that could help with aiding your mum's understanding and that there ultimately nothing to be afraid of???

Tried that and she told them to leave and shut up, mum is a very very stubborn person indeed.

 

[Box Brownie]

Tried that and she told them to leave and shut up, mum is a very very stubborn person indeed.

Hmmmm? sadly it does seem that you have a dilemma & an impasse. I sincerely hope that you and your sister can resolve the situation for your 'sanity' and your mum's ongoing health care needs.

 

[Fuji Dave]

Hmmmm? sadly it does seem that you have a dilemma & an impasse. I sincerely hope that you and your sister can resolve the situation for your 'sanity' and your mum's ongoing health care needs.

At the moment mums good days are more than her bad, but both my self and niece are just waiting for another bad day sadly.

 

[Box Brownie]

At the moment mums good days are more than her bad, but both my self and niece are just waiting for another bad day sadly.

Sorry, I thought you had said 'sister'. All the best to all your family in coping with the "now' and the future.

 

[Fuji Dave]

And that is the problem. If your mum can get away without a diagnosis she will. How do I know? I went through exactly the same with my mum. My mother lived in Suffolk and half way through one day when I was in Wrexham I got a call from mums home number, only it wasn't her, but the police saying they had picked up mum wandering in her nightdress and they couldn't leave her. They got her admitted to hospital and after that things changed for the better. Before that despite our concerns she wouldn't see the doctor.

Would it be possible for a doctor or one of the mental health team (don't tell your mum it is mental health though) to visit your mum at home. Speak to someone from dementia UK they may be able to help.

Sadly this is just what I think will happen to my mum.

 

[Nikon Ken]

I feel for you in your dilemma. Dementia is a difficult disease and there will be lucid and less confusing times. The sooner you vcan get your Mother treatment the better.

I have not experienced what you are going through so cannot offer any definitive help. However, I know about Dementia. My Wife was diagnosed at 59 and after twelve years passed away two months ago. It was a long journey, some very good times and some not. You have to try to get help for your Mum to make the most of the good times. Are there any memory cafes near you. These are usually run by charities and are for people with Dementia. If you can persuade her to go on the pretext of a social activity, she may be less scared and it may be an intro which leads to a diagnoses.

Dementia UK have Admiral nurses. I don't know if they can help. It may be worth a try.

I hope you are successful and wish you all the luck.

Ken

 

[kendo1]

Been there.
We had quite a trying time with my mother in law. Every scenario you mentioned happened.
The doctor visited her at home as there so many 'missed' appointments and my wife eventually gained power of attorney.
Then we found out, after she passed away in February at 93, that she had changed her will herself, with no witnesses...
Oh what fun that caused with the courts!
So, it was a difficult time interspersed with some good times.
Appreciate the good times when they happen, the bad times are not really her but the condition.

 

[Fuji Dave]

I feel for you in your dilemma. Dementia is a difficult disease and there will be lucid and less confusing times. The sooner you vcan get your Mother treatment the better.

I have not experienced what you are going through so cannot offer any definitive help. However, I know about Dementia. My Wife was diagnosed at 59 and after twelve years passed away two months ago. It was a long journey, some very good times and some not. You have to try to get help for your Mum to make the most of the good times. Are there any memory cafes near you. These are usually run by charities and are for people with Dementia. If you can persuade her to go on the pretext of a social activity, she may be less scared and it may be an intro which leads to a diagnoses.

Dementia UK have Admiral nurses. I don't know if they can help. It may be worth a try.

I hope you are successful and wish you all the luck.

Ken

Been there.
We had quite a trying time with my mother in law. Every scenario you mentioned happened.
The doctor visited her at home as there so many 'missed' appointments and my wife eventually gained power of attorney.
Then we found out, after she passed away in February at 93, that she had changed her will herself, with no witnesses...
Oh what fun that caused with the courts!
So, it was a difficult time interspersed with some good times.
Appreciate the good times when they happen, the bad times are not really her but the condition.

In the space of a few minutes this morning mum has phoned me 5 times to ask when I`m going to go over to help clean as she forgets she phoned. Instead of me saying we just spoke I now say ok mum I will be over tomorrow as if I tell her she just phoned she gets upset. Tomorrow when I go over I will suggest we both go to see for a memory test and try and go from there.

 

[Nikon Ken]

The attached link may be helpful as it has others experiences detailed and access to various resources.

Good luck.

 

[Fuji Dave]

The attached link may be helpful as it has others experiences detailed and access to various resources.

Good luck.

Thank you for the Link Ken, that was the first forum I joined when I found it last week.

 

[woof woof]

I deal with this every day and in fact I don't usually live day to day I live hour to hour as I never know what will happen next as a day that starts or is going well can flip in a second to a very upsetting and stressful one. I have two sisters, one is a nurse, but they're next to useless. I've tried and tried to get them involved and begged for them to give one day a week alternatively, that's just one day a fortnight each and I'm not talking dawn to dawn as just three of four hours is a Godsend so that I can get a break and take my wife out but all it leads to is arguments between the two of them and slamming the phone down on each other and if one does come they do nothing in the house and in fact just make things worse and I have to deal with the mess they've created when we get back. When we do get out we're constantly on edge, looking at the time and wondering what we'll walk back into at home. Such is life. Me and my Mrs get a couple of hours here and there and maybe I get a holiday every two years and my God I needed a break this year.

Years ago a friend told me that looking after someone is a privilege and an honour. He really shamed me and I've never forgotten what he said. Plus I regard myself as a Christian and when I'm judged I want to say that I did my best for everyone involved. Some wont agree with this but it's my belief system and there are times when that's all I have. If I don't do this the alternative is some sort of home and I've seen how bad these can be and I've seen people go down so fast in them, IMO they're often a slow death sentence and if I push things down that path I don't think I could live with myself.

It's heartbreaking to hear someone ask the same question twenty times, to see them believe they have a partner and that they're moving in soon but not be able to say who that person is. It's just heartbreaking when they forget where they are, reinvent past events over and over again, allocate blame that just isn't there or suddenly become abusive but there are good times too but the bad times can be devastating as can the strain of doing it all. I have IBS, I get heart palpitations and stress and anxiety and depression and there's the effort of it all, being the first up and the last to bed every day and days lasting from 6am to midnight or 2 or 3 am. When we have a bad day I get immediate physical effects that can take weeks to get over and all this can come out of the blue when I think we're having a good day. For me it's just something I have to do for three reasons, there's no one else, I don't agree with putting people in homes unless it's absolutely the only/best thing for them and lastly and whilst my Mrs is understanding, I think it's the right thing to do.

I don't know what to suggest in your place Dave other than to look within yourself and make choices that you're most sure you can live with.

 

[Fuji Dave]

Thanks Alan and like you I don`t agree with putting people in homes unless it is the only last thing to do, at the moment mums good days far out weigh her bad days but I know they will get worse. I`m in touch with my niece a lot so that helps plus we have both spoken to mums doctor and they know about her condition as they put it. Like you at the moment I`m living the day hour by hour as one minute can change so quickly.

 

[stupar]

My dad (no longer with us) was diagnosed with Lewy Body Dementia.
It's a very aggressive form of Dementia that as you know along with general memory loss issues is also coupled with the venomous comments/actions that can be made by a person without realisation.

My dad verbally abused my mum on a regular basis. It was hurtful to watch and talk about.

In our case we managed to get PoA sorted but after that it was a long drawn out affair which included doctors, testing, temporary care and eventually full time care home residence.

If you wish to chat me about anything in particular feel free to drop me a PM