We think my mum is suffering with dementia

[Siany]

Hi everyone
I have joined the forums as our family suspects that mum is suffering with a form of dementia. She is insisting she is fine which we are guessing is a symptom of the disease.

My brother and I went to her GP in secret to speak to him and he informed us he would have to see her to make a diagnosis. He said he would call her which he has done. The problem is we can't ask her about it as she gets very angry and shuts down.

Dad is struggling to cope with her; he isn't used to being the carer in the relationship and at 74 is getting a little doddery himself. He is burying his head in the sand about it which is hard as he is our only source of information.

What can we do?

 

[sue38]

Hi Siany and welcome to Talking Point (TP).

I'm sorry to hear about your mum. It's not unusual for someone with dementia either to be in denial, or simply not to recognise that there is a problem. Your dad may well be finding it difficult to come to terms with, and probably scared as to what may happen to your mum.

There may not be a lot you can do to get your mum to recognise that she has a problem, but I think it might help to reassure your dad that a diagnosis is important. Firstly it may rule out other causes, and secondly if dementia is diagnosed there is medication and other support available.

This factsheet explains a little more

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260

But this booklet may help your dad or your mum more

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=728

I hope you find TP helpful.

 

[Busybee67]

Hi Siany. I can remember them early days too they can be very scary but it so important to get a diagnosis early even if it is not the news you want to hear. My mum was 64 when she was diagnosed with dementia (4 years ago) and the year previous to that was very difficult. When she was told she had dementia she was devastated and so was the family but we sat down and talked about it and agreed that we would face it as a family. She had been depressed and very withdrawn but was put on some medication and changed almost over night. It did not change the dementia but she became a very happy and contented person which made life a lot easier for my Dad and the family.
Stay strong as a family and try to do as much as possible with your mum and more importantly be there for your dad. I have taught my dad how to use the washing machine, the iron and lots more even cook, which he loves now.
Just try to stay strong and use these forums. I posted my first one yesterday and was blown away by the kind words and support I have received in such a sort time. Take care x

Anita

 

[suzywoozie]

Little White Lies

Hi

We had the same thing my Dad, and eventually got him to visit the doctor by pretending that he had been called in for a general check up (I wrote to the Doctor before). The Doc then asked various questions in a casual way, realised there was a problem, and referred him. I think that Dad was quite far along with his dementia before we realised there was a problem, if your Mum is in an earlier stage it might be more difficult. Dad lives with us now and we tell 'little white lies' all the time, without shame! I would say it's almost essential, because if you try to explain everything truthfully you would crack up.

 

[lemoncrunch]

I had great difficulty getting my mum diagnosed. She was in complete denial that there was anything wrong, and some 5 years later, still is, and put on a fine act in front of the doctor. Once you can get in the system, there will be support available but you might have to fight a bit for it to start with. I found it really was a case of being constantly persistent. (And her GP at the time was a friend of ours! Let's hope it is easier for you.

 

[JackMac]

hello
I really thought we would have a problem getting my mum to the doctor so I said that I thought she might have an underactive thyroid because she was forgetful, not sleeping and putting weight on. That got her to the doctors although the doctor didn't realise what was going on and did a test that showed she was fine and then we had to get her back again! thankfully that was easier than we thought.

So try saying she could have thyroid problems BUT in addition to that, let the doctor know what the plan is.......unlike us!

jackmac

 

[Siany]

Thanks everyone!

I think I am going to write to the GP and request an update on whether he has seen mum yet. The surgery won't talk to me as I am not a registered patient there so I think writing in is the only option!

Your advice has really helped me. Thank you for your support.

Siany

 

[sally m]

My mom's getting very aggressive verbally

My mother lives 23 hrs. from me so I only get to see her once or twice a year. My brother, however, saw her this past weekend and his wife said Mother started yelling at them at 2 different times - once even shaking her finger in my sis in law's face screaming, "YOU DON'T EVEN HAVE ANY IDEA HOW BUSY I AM! YOU DON'T KNOW ME!!!"

This is very frightening for all of us and that's even with me being a nurse. It is VERY difficult admitting your parent might possibly be entering into dementia - but from every symptom she's showing, I don't know what else it could even remotely be... Mom's 81 and this is tough.

Any suggestions for getting her pointed to the right specialist?

 

[Goingitalone]

Hi Siany,

Welcome to TP. Remember your mum's GP might be unable to give you the diagnosis as he has to repsect your mum's confidentiality.

We were up against this problem years ago when my brother was diagnosed with schizophrenia. It took several years and an enlightened doctor to realise that as carers we needed to know what we were dealing with.

Do keep a diary of your mum's behaviour so that you can give the doc information to help him make the diagnosis. Sometimes it can take a little time for the diagnosis to be made because dementia sufferers can be surprisingly resourceful in putting on a good face for the proffessionals!

Have you broached the subject of getting help in for your dad or is that a no no just now?

Maybe when you contact the GP you can raise that subject with him/her so that he/she can see why you need to know what's wrong with your mum.

I hope you get some help soon. I know how worrying this first stage is having been there myself.

My mum now has carers going in daily, a thing she wouldn't have countenanced 3 years ago and we now have Direct Payments, a budget to get our own carers. She is now having a wonderful old age.

Big hugs,

Maggie

 

[Christin]

Hello Siany and Sally, welcome to Talking Point to you both.

This is a link to an AS factsheet which I hope may be helpful to you.

http://www.alzheimers.org.uk/site/scripts/document_pdf.php?documentID=260

I would suggest a phone call to GPs to express your concerns.

With best wishes to you both. Please let us know how you get on. xx

 

[sally m]

Thank you, Christin. I did mail my Mom's MD a letter last night after work. I do understand HIPAA quite well so I'm not expecting any type of reply from him... however, he now knows something is amiss and will be better prepared to assess her with his eyes wide open next time she travels thru his office.

 

[russellgww]

If it's any help, with my FiL (who is also in denial) he was ready to admit that he has a few "Memory problems" and so he agreed that I visit the GP with him for an unrelated illness. I had earlier written to the GP in confidence and he raised the memory problems as part of the consultation and this led to a referral to psychiatrist.

2 years on FiL is still in denial but mostly taking his Aricept which at least is hopefully slowing things down - we did notice a drop in anxiety soon after he started taking it. He has follow up clinic visits every 6 months but is really irritated by it and the questions they ask - to be honest I am not sure I see the point, as long as he gets the drugs that alleviate the illness there doesn't seem to be much more they can do.

 

[Siany]

Hi

I did email the GP a couple of days ago requesting an update on mum but as suspected he can't give me any info due to confidentiality.

We are finding it really frustrating as Mum needs her family to support her which we are all waiting to do but I feel as though I have come up against a brick wall.

I will try talking to Dad to see if he knows anything but knowing mum she has probably not told him anything! The thing is it may not even be dementia so a diagnosis of what is actually wrong would be really helpful!

It's great to know that I can communicate with real people who are actually going through the same thing as me, thank you to everyone who has posted a response to me, you don't know what it means!

Siany xx

 

[Karenm001]

Hi siany,
What a worrying time for you all, I am sorry to hear about your mum.
I completely understand the situation you are in, it took my sister and I 4-5 years to get dad diagnosed. Our problem was that Mum didn't want dad to go to the doctor. She was in denial for a long time, and insisted that his symptoms were side effects of his heart tablets. It was frustrating at the time as we wanted the best for dad, but I now understand how scared she was, once you put a name to something and let on to 'outsiders' that there is a problem there's no going back. After much persuasion from us, mum agreed and sent dad down to the doctors by himself to talk to them about it, however by the time he got there he forgot what he went for.
Discussions with mum about the subject were never easy, however reassuring her that a diagnosis for dad would give him access to medication which may slow things right down, and help and support for her, maybe not now, but in the future, seemed to work.
Is your mum in good health otherwise? Dad has arthritis in his hip, and so i used this as an excuse to go to the docs with him. I rang the surgery ahead of the appt and spoke to the doc about his memory problems, and while we were there I broached the subject. A short memory test confirmed that there was a problem.
a few weeks after this dad had his second heart attack. During his stay in hospital he thought he was on holiday in a hotel, and kept trying to go home. The doctor arranged a MRI scan which confirmed that he has vascular dementia. That was 2 months ago - Mum has now accepted dad's diagnosis, we are seeing a solicitor next week regarding LPA, and I think she's even coming to terms with the fact that he'll probably have to give up driving which up until recently has been the subject of many unhappy and tearful discussions.
It must be an awful time for your dad as, like my mum was, I'm sure he's worried about the prognosis, what the future holds and how their life will change.
I am sorry for the long post and for rambling on. I guess what im trying to say is that a couple of years ago i couldnt see an end to the heated discussions and arguments, let alone a diagnosis. There is a long way to go though, but we're facing it together, as a family. There is always a light at the end of the tunnel, just that sometimes the tunnel has a bend in it
My best wishes to you and your family, I do hope you reach a resolution soon.
Karen

 

[happisoo]

Hi

We had the same thing my Dad, and eventually got him to visit the doctor by pretending that he had been called in for a general check up (I wrote to the Doctor before). The Doc then asked various questions in a casual way, realised there was a problem, and referred him. I think that Dad was quite far along with his dementia before we realised there was a problem, if your Mum is in an earlier stage it might be more difficult. Dad lives with us now and we tell 'little white lies' all the time, without shame! I would say it's almost essential, because if you try to explain everything truthfully you would crack up.

I agree with this Completely!!! We had the same concerns about my mum and eventually she had a visit to the doc's after my brother and I went to see him. Luckily he was very sympathetic and invited her in - he didnt use the dementia or alz word and just chatted away to her as much as he could and pretty quickly he got worked it out. It was vital he saw her in terms of us having Power of Attorney over her financial affairs You may think about this for your mum (and dad?) (if your dad's too frail or not able to cope - it's a lot of paper work nowadays). Good luck, be assertive and listen to your intuition about your mum's condition and take the very best of care.

 

[happisoo]

Hi

"I did email the GP a couple of days ago requesting an update on mum but as suspected he can't give me any info due to confidentiality. "

Make an appointment to see the doctor yourself and be assertive about your intuition and feelings and observations of your mum and that you need to know his thoughts on her condition - he only has a duty of care towards her. You have to actually care for her and you know her best not him. If he wont listen to you ask a local social service team for a care assessment and they will probably want to know her GPs involvement and then they will share information with you. Worked for me ...good luck x