Dad has severe memory issues but no diagnosis

[liger]

Thanks SSD and Mumsnet for getting this section started. Here's my starter for ten ....

My Dad is 84 and has had memory problems for the last 5 years, with the last 2 years seeing a more significant deterioration and confusion. Despite various visits to a frankly useless GP he has no formal diagnosis.

Over the last couple of weeks an unrelated health problem saw him hospitalised for a few days which led to him being very confused and disorientated and we think depressed. The saddest thing is that he is aware he is confused.

My Mum is coping very well, but i can't help but think that a more formal diagnosis would enable her to access some support and to plan for the times ahead. The current health issues mean that the diagnosis of alzheimers or dementia is not the focus for her energies just now.

I struggle with respecting that my parents are independent adults, and that Dads health decisions are still his to make, but I also want to help as much as possible and feel lost as how best to do this. Any experiences of MNetters would be v gratefully received.

hi liger, I'd try to get him assessed by another doctor if his present one is useless. Maybe there is an age concern near you that could give you the name of a doctor in your area? actually I think they are called age uk now, might be worth trying to phone them for advice.

It sounds like your parents are doing well, but they now need you to step in a bit, which is hard but neccessary. I'd also phone your local council and ask if they have an older peoples team, has your dad been assessed by social services to see if there is any help they could give him?

sorry I don't have experience of dementia, hope someone comes along who can give you better advice soon

bumping for you op, there must be someone with experience of dementia out there!

No experience of dementia I'm afraid, OP, but I think you can ask for an assessment from Social Services.

Can I join you?? Another sandwich here. My mil has been going downhill over the past few years since Gil had a major stroke. She was assessed and prescribed medication which if she takes it helps her confusion and anxiety . There are tests which monitor deterioration over time. I'm sorry I don't have all the details about the tests but I know the medication delays the symptoms worsening.
One thought for everyone is to make sure the wrinkles have wills and power of attorney in place- mega pain to get done but is a real help when things get tricky- my mil phoned in tears to say she had 19 pence and she felt ashamed to ask for money- she had thousands in her bank she'd used for years!!

liger, it's possible that your Dad's "unrelated health problem", for which he was hospitalised, has exacerbated his confusion etc - not in itself, but possibly he was on medication which made his memory and confusion problems worse.

I'm not a healthcare professional, BTW, but with my own Mum I did see that sometimes stuff like antibiotics, for eg, could make her 'wandery mind' much worse (or sometimes much better - which made it very confusing for me too).

But to get back to your original problem - I realise you don't want to overrule your parents' wishes about their own healthcare, but if you could have a gentle chat with both of them about getting some more formal tests done, via their GP (or another, if you don't think their own GP is sympathetic) it would certainly be a good idea.

If they're agreeable to the idea, you could go with them to the GP. Although Mum's GP was pretty OK, I did find that, one one occasion, when I went with her and subsequently followed up the visit with a letter to the GP from me, things did seem to 'get done'!

I think this is a problem that many of us have. Our parents are independent people and we are still their 'children'. To suddenly have to reverse the roles is very difficult.

And, yes, as twentyten says, do make sure you have a Power Of Attorney in place.

You need to push for a diagnosis - some GPs (and consultants!) are hesitant to diagnose formally with dementia because of what that diagnosis might mean to the family - without recognising the benefits a diagnosis can bring. Your father needs a referral to a dementia consultant - see another GP if necessary

Thank you all so much for your replies. Lots of really useful points for me to think more on.

Fru, you are right to mention his latest medication. Mum learnt only on Wednesday that the tablets are recommended to be given at night as they can make patients drousey, which could well account for Dad withdrawing to his room for a week after getting home from hospital.

Dad has had several tests over the years at the GP about his memory, instigated by Mum. The GP at that time declared Dad fine and seemed to disregard Mums concern. The tests were asking Dad various questions such as what year is it etc. On a good day he could do this,the point is Mum was saying there were days that were not good! That particular GP thankfully retired. The replacement seemed a bit more on the ball and had noticed that Dad would be confused on occasion. But time elapsed before anything more formal happened, and I have now learnt that tha GP has been replaced by yet another person who my parents have not yet met. Given that his other health issue will be dominating things for a while I take heart that letters to GPs from family do garner a reaction. I might follow that path with the new doctor.

Wills and power of attorney is a sticking point and has been in discussion inthe family for a while with little progress. We must crank this up several gears but it all feels like added pressure on my Mum whe she is caring for a sick man and seeing her life partner no longer sure of where he is or what is going on. How have others dealt with this balance of needing to push things when there is so much else dominating the scene if that makes sense?

Just also to say that Dad was a fairly formidable stubborn character in his prime, and very wary of authority and bureaucracy. This is very much still there, so getting him to participate in another trip to the GP or hospital, let alone discussion about Wills takes alot of gentle discussion and emotional energy. He will flatly refuse,and accse Mum of plotting behind his back. Needing to pick our battles is an understatement. But I now feel with wills the issue is too important and we just need Mum to be able get something sorted out.

It's so hard, so many issues so knotted up together.

Thank you all. It's ver good just to beable to get these thoughts down.

hi liger, sorry you;re having such a hard time of it

IME just keep persevering with the pushing of things, your mum and dad dont need to know the extent of what you;re doing

the gp issue sounds like a nightmare, I hope the new one is more clued up and can persuade your dad when he wont listen to you, he's probably of the generation who listen to drs and think they can do no wrong, the drs that is!

Hope alls going well. Just wanted to say that regarding wills and POA it may be worth using a little bit of emotional blackmail with your dad. My dad was very secretive about his affairs and didn't want us poking our noses in but because he worshipped my mother he was amenable to the argument that organising a will would make her life much easier if he were to go first. It is really worth persevering with this as in the event it did make life much easier in the first few days after dad died - and it was much less distressing for mum. POA is also well worth sorting out - and again might be useful to peddle the "wouldn't you rather have us sort things out for you than some doctor or social worker". It is also worth gently pointing out that if your parents have separate bank accounts and utilities are paid from one when that person dies the account is frozen and the remaining partner can end up having their electricity cut off (happened to my elderly neighbour !). Joint accounts even if only for utilities are worth considering.

I am currently going through this too. My Father has severe memory loss, and no diagnosis as yet.(He can't even remember the visit from some long standing friends a day later.) After several requests the GP referred him to the NHS elderly person's mental health team.It has been a very slow process, but so far the process has entailed waiting for a long appointment with an occupational therapist who went through a long questionnaire- " Name of the Prime Minister" etc . This was followed by a wait for a CT scan. We now are waiting for the appointment with the consultant who will look at the questionnaire and scan results and give a diagnosis. I would say write or telephone the G P and say you want a referral. We were told by a District nurse (who dealt with another issue) that once we have a diagnosis there will be more support available. On the other hand, having the scan was traumatic and confusing for him and part of me thinks perhaps he is just best left at home, and being made comfortable.However I do ask his opinion about if he wants to know what's wrong, and he says he does......My thoughts and support to everyone going through this.