FIRST POST: Mum & Dad refusing to go to Doctor? Any advice?

[juliantucker]

Hello I'm Julian, 38 years of age and a first time poster...

Over the past few years my mother has developed short-term memory loss. This has been getting worse of late and recently she has occassionally been unable to do simple tasks that were once easy (she tried to make porridge last week but was unable to understand that a jug could measure things).

I'm very worried about her - however, I have discussed it with both my parents and they have agreed together that Mum doesn't want to know 'as there is no cure'. Therefore they have agreed not to seek medical help and just 'go with the flow'. I feel utterly helpless as they now consider the topic of conversation to be 'closed'.

My mother is 68, my father 73.

Has anyone else experienced this problem? Any advice greatly appreciated...

Kind regards,


Julian (Canary Wharf)

 

[Brucie]

Hi julian,

welcome to Talking Point.

You ask

Has anyone else experienced this problem?

you will most likely find that a number of people have experienced the problem, and that for any possible problem, there will be at least one member who has been there.

What you say appears to me to be significant

she tried to make porridge last week but was unable to understand that a jug could measure things

Forgetting facts and names is what the public thinks dementia is all about. They don't realise that fundamentals like knowing what a jug is used for, how to sign their name, how to use a door key, etc are as common at some stage.

That is not to say your Mum has dementia, however. There are other possible causes, and the only way to find out for sure is to seek medical help.

Therefore they have agreed not to seek medical help and just 'go with the flow'.

Well, it is their decision, though of course it is always best to have the family on board.

The medical help might rule out dementia though or - if dementia is diagnosed, help to put things in place for the future when they surely will need help. Doing things now might lengthen the time you both have your Mum around.

If they consider the matter closed, there is no point in arguing about it. If it is really dementia, it will be a matter of time before they will need to reconsider. That time could be years and years.

What I would recommend though, is that you use Talking Point to learn how others have seen the progression occur, and you will then be able to help your Dad.

In your place, I'd start to keep a diary, recording each day that you see your Mum and anything a little strange happens, or has happened. If we don't do that we can't really appreciate patterns of behaviour changes, and the information might also inform the doctors at a later stage.

Good luck - I really hope it is not dementia.

 

[Grannie G]

Hi Julian,

Welcome to TP.

You are right to be concerned about your parents, but really can only respect their decision not to seek medical advice for your mother.

What I would do is be on hand as much as possible, because if she does have dementia and your father begins to struggle in his role as carer, you may then be able to persuade them to seek help.

We know there is no cure for dementia. Medication can prolong a better quality of life, if prescribed, but it doesn`t always have positive effects, and dementia does progress at different rates in different people.

The sad thing is, if it isn`t dementia, there could be a remedy which your mother is denying herself.

The Diary is somehing constructive for you to do. You could even approach your parents GP for advice, as even if s/he will not discuss your parents with you, s/he will listen to your concerns.

Keep in contact with TP, it will help you, and in turn might enable you to help your parents.

Take care xx

 

[Cate]

Hi Julian

Welcome to TP.

No your not alone, my mother refused to seek medical help for a very long time, in the end my brother and I approached the doctor and asked him to make a house call on the pretext of a general health check.

However, as you have broached the subject with your parents I dont think, in your case that would be a good idea now, you could lose their trust.

As Bruce has said, you can only watch, record and wait. Just be there for them, and reassure them. It could be something else, such as a UTI, which can cause confusion, but you should just wait and see.

I would suspect they are afraid of a diagnosis, and who can blame them, we all cope in different ways.

Keep in touch with TP as and when you need to. Fingers crossed it turns out to be something simple.

Cate

 

[juliantucker]

Cate, Sylvia & Bruce,

Thank you so much for taking the time to get back to me with regards to my Mother's condition - it was hugely helpful advice.

I had initially thought, as Cate said, of contacting their Doctor - but my parents are incredibly astute and self-reliant and I accept your suggestion that it could involve a break-down in trust.

Bruce & Sylvia's suggestion of a diary is going to be helpful too - I find it hard myself to remember when it started or how serious it is. Sometimes it feels the condition started yesterday, and sometimes (as my brother points out) it feels that she has had a much less serious case of it all her life.

However, she has lost all confidence and won't even take phone messages anymore. Maybe I should talk privately with my father about doing things to build confidence?

Finally, Cate could be onto something with the UTI - as this has plagued her for years. I'll talk further to her about this problem in isolation of AD.

Apart from that, I will take all your suggestions on board, avoid medical advice at this stage and keep reading TP to see how others deal with it.

Once again, many thanks for all the advice - it's great to know that there are others around!!!

Kind regards,


Julian

 

[elaineo2]

hi there,i have had this problem with my dad.total denial and refusing to see the G.P.Have your parents had any tests at all?My dad was diagnosed with pernicious aenemia which can cause demantia like symptoms,he has the b12 injection quarterly.However,i felt he was getting worse and wrote to his G.P and expressed my concerns.The outcome being he is due his b12 Friday and the nurse is going to take blood tests and the G.P will assess whilst he is there.hope you get there love elainex

 

[Kathleen]

Hello Julian

As others have said, your mother may have a medical condition other than dementia giving the symptoms you describe.

I know you say your parents consider the subject closed, but could you and your brother together discuss your fears with them?

Maybe if they understood how upset you both are, they would at least see the GP to find out if she has a treatable condition.

Tell them that if, sadly, it is a form of dementia and they want to "go with the flow," both of you will respect that decision and help out as and when you can.

It is a compromise worth trying.

They are lucky to have such caring sons, it doesn't always happen that way.

Kathleen
xx

 

[MillyP]

Yep...sounds like my Mum and Dad, although I have the Dad who was forgetting things...like where the bedroom and toilet were and going out in the car and having to ring home because he'd forgotton where he was supposed to be going. I noticed a change in my Dad in Christmas 2004 after I went on a drive to London with him and he talked rubbish all the way there and back again...I mentioned it to Mum and she said, oh. it's old age....I wasn't convined and spent the next two years watching my Dad deteriorate and my Mum trying to push it under the carpet...eventually he got so bad that she took him on three visits to the Doctor before he would send him for an MRI scan and then in Autumn 2006 he was diagnosed with Vascular Dementia...the rest as they say is history and what happened next has been written in my previous threads. The thing is, it seems it's human nature to stick our heads in the sand and hope it all goes away and nothing nasty happens...but that's not the case, alot of people are in denial and think, if they don't do anything it will all work itself out on it's own......you can't force them to see a Doctor and I spent two years banging my head against a brick wall trying to change my Mums mind about it but in the end it has to be their decision, sad as it may seem. You will get there in the end but don't hold your breath...parents can be as stubborn as teenagers I find.

 

[juliantucker]

Hi everyone,

Firstly - many thanks for taking the time to reply to my first post.

The good news is that this Forum has given me the impetus to raise the subject with my parents again - and after a LONG talk last week - they have finally agreed to go to the Doctor and seek help.

Mum seems to be getting a lot worse, but aware enough to understand and perceive all her problems - so she will be astute & lucid enough to explain fully to the Doctor next week.

She's being very brave and I wanted to thank everyone on here for all their advice and support. I'll keep you updated!

Kind regards,


Julian

 

[Grannie G]

Well done Julian.

It shows how effective a little gentle persuasion can be. You must be really relieved.

I do hope you let us know the outcome.

Take care xx

 

[Margarita]

but aware enough to understand and perceive all her problems - so she will be astute & lucid enough to explain fully to the Doctor next week.

Now that sounds like good new , ask doctor to do full blood test , heart blood pursuer , look in ear's for infection , to rule out all physical causes , also urine test like cate says , then if all that come back clear ask to be refereed to memory clinic , they do the memory test and brain scan if they feel your mother needs it , but push for brain scan they did it for my mother and I also said I wanted it for my brother after they rule out all physical causes and they done it , if you don't demand nicely you just don't get the services that our out they that your entitled to

Its hard get going getting diagnosed . you just got to keep on top of it. good luck, let us all know how you get on

 

[Kate P]

Well done Julian.

I wonder whether it would be a possibility for you to go with mum and dad - for their purposes to offer support - for your purposes to see what's going on and push the doctor if necessary?

I have been in a very similar position myself - mum said she was fine and dad wanted to believe that. Anytime they came back from the doctor alone they'd tell me she was fine because mum told the doctor she was okay and dad backed her up!! (Later found this out from speaking to the doctor myself!).

You've managed a massive step in getting this far - all the best to you all.

Kate P
XXX

 

[Skye]

The good news is that this Forum has given me the impetus to raise the subject with my parents again - and after a LONG talk last week - they have finally agreed to go to the Doctor and seek help.

Mum seems to be getting a lot worse, but aware enough to understand and perceive all her problems - so she will be astute & lucid enough to explain fully to the Doctor next week.

She's being very brave and I wanted to thank everyone on here for all their advice and support. I'll keep you updated!

Well done, Julian. You've obviously handled the situation with great tact, to have achieved this outcome.

It's so good that your mum is co-operating in talking to the doctor, and can talk about her problems.

My husband John has always accepted his problems, and it makes it so much easier to deal with, I've never had any anger or aggression.

Of course, this is largely the result of the area of brain damage, but I hope you have the same experience.

Let us know how it goes.

Best wishes,

 

[Cate]

Well done Julian, sounds as if you are making progress.

I think Kate's suggestion that you go along 'as support' is a very good idea, if your mum is anything like mine, a very proud lady, when she first met the Consultant she put on a grand show, thankfully he was experienced enough to see right through her little performance.

Good luck, if you are able, please let us know how things are going.

Cate

 

[sue38]

... if your mum is anything like mine, a very proud lady, when she first met the Consultant she put on a grand show, thankfully he was experienced enough to see right through her little performance

Good point. Although my Dad (who is the one with AD) puts on a good show, my Mum who with us is screaming she is at the end of her tether, will happily tell the Consultant 'we are managing very nicely thank you'. My sister and I make sure one of us is there, partly so we can say 'well now that's not strictly true, is it Mum?' and partly so we can hear what the Doctor has actually said and not my Mum's interpretation. Unfortunately she does seem to have developed 'selective hearing'.

Don't get me wrong, I understand that my Mum wants my Dad to be as well as he possibly can be and it is so much harder for her to come to terms with the diagnosis.

 

[x-lauren-x]

uncle

hiya
i know how you feel, its horrible to worry about someone you care for but you cant do anything to help unless they are prepared to help themselves too. My uncle is diabetic so he has to go to the doctor for check ups sometimes anyway but when he began to have memory problems he refused to go saying that the doctor couldnt help and was incompitent. as im at school i cant really make many phonecalls to the social services and doctors so my mum does that and updates me and i normally tell my uncle or jsut chat to him to try and cheer him up. anyway, as soon as we gave the doctor a ring and asked if he could visit my uncle at home he was brilliant, he went over and just had a general chat to my uncle. I think then, my uncle had remembered who the doctor was and that he could be trusted. after this he was happy to go , infact now sometimes we get phonecalls from the doctors asking for him to be taken home! If you can phone your mum and dads doctor and ask for them to visit it might make a big difference, it certainly seems to have worked with my uncle!
good luck, and please keep us updated!
luv
lauren xxx

 

[snowtree]

welcome julian

well dad started with short term memory loss ...HA..i forget when it was!! last year or maybe the year before...you start to search your own memory for when things weren't right ...i think i knew there was a problem when my super intelligent dad couldnt spell "glazier". You know when things arent what they should be. The first thing i recommend is get an enduring power of attorney sorted out...the managing of their financial affairs is paramount to managing them. Perhaps they will need someone to come in and help with their caring and that needs someone who has a grip on the financial matters to sort it out. if you dont have an EPA you can't manage their money for them and that is very important. once you have the epa then basically you have to watch the slow decline, help where you can and vent your frustrations privately! The people on this site who give advice are medal winners in the patience department...i have this to learn..i am new to vascular dementia. It irritates me...angers me, frustrates me, makes me wanna scream and shout and throw plates at the walls...TODAY HAS BEEN A BAD DAY AND I WANT TO SCREAM...but you learn not to...you learn to speak calmly and in a new way....gently. and if they dont understand something you learn that its ok...you just start again or maybe just start a new subject. People with dementia sense they are a burden so try to engage them with life and help them forget their sense of being a burden...try to make their lives stress free...help them to smile. Love them for who they are now and not what you remember them as. Make their inabilities at using the measuring jug not an issue but an ok thing...no big deal, learn that life is not about making an issue over someone not being able to do what they or you are used to doing but a light issue over not being able to understand the world as it presents itself now...run away when you can and come back refreshed....dont bear a grudge...smile...give love and understanding....get all the help & advice you possibly can.....tell people who know your parents that you think this is going on so if they don't make sense other people understand why....tell your parents friends so they can rally round and ease your burden...do sudoko so you keep your brain alive!! God bless x x x its been a hard day today

 

[Grannie G]

Hi snowtree,

It might have been a hard day today for you, but goodness didn`t you do well

Love xx

 

[sparkle]

Hi everyone,

Firstly - many thanks for taking the time to reply to my first post.

The good news is that this Forum has given me the impetus to raise the subject with my parents again - and after a LONG talk last week - they have finally agreed to go to the Doctor and seek help.

Mum seems to be getting a lot worse, but aware enough to understand and perceive all her problems - so she will be astute & lucid enough to explain fully to the Doctor next week.

She's being very brave and I wanted to thank everyone on here for all their advice and support. I'll keep you updated!

Kind regards,


Julian

Hi Julian

It sound very much like my mum... Dad refused to get her tested - by the time she was she was well into the first stages , she was never told as she ws so forgetful by that time that he said she'd probably rather not know.

I take my hat off to your Mum... it can't be easy, and even though I was adopted I have become paranoid about my own memory having seen what Mum is going thru.

Good luck - do keep posting - I've just found the board but know its better to talk to people going thru the same experiences who can identify with your emotions.