Do we tell our DM she has Alzheimers?

[RebeccaNoodles]

Hi - I'm not sure if anyone will see this but if you do, I'd love a reply. Have tried calling Alzhiemers Society helpline a couple of times but they're busy.

After a long (18 months+) process my DM has been diagnosed with Alzheimers aged 73. It's between early and middle stages apparently. She's mostly OK and lucid but has had some episodes of not recognising my DF and leaving the house in the middle of the night. She's taking arceptin.

One of our main questions right now (me and my siblings) is whether/what to tell her about her diagnosis. She knows very well that something is wrong and that her memory is affected. She's mostly calm but sometimes (e.g. when seeing a doctor) becomes understandably very frightened and in denial about it. We've all talked openly about her memory issues but so far haven't used the word 'Alzheimers'. I don't think using the word would be helpful to her. She referred to her night escapes as 'sleepwalking' and said to me that she likes that word because - her words - 'there's no stigma to it'. Which suggests that she would feel the stigma of the word Alzheimers. However my brothers point out that it might become impossible to hide the word if for example she starts to have home visits from relevant professionals who leave leaflets etc. Any thoughts?

Also - if you do have a family member in similar situation, what do you wish you had known? Aside from spending as much time with her as poss, and making sure she knows we love her, I'd love some tips of what to bear in mind over the next while.

Thanks all.

But it's her diagnosis. Was she not in the room when you were told?

There may be something I have not grasped but I cannot understand why anyone would feel they have the right to keep this from the person affected.

My own DM would absolutely expect to be fully informed.

A specialist dementia nurse broke the news to my my father in law and my partner and I were present at the time.

My father in law was worried about what it would mean. Would he have to leave his sheltered housing? Would he have to live in an asylum?

The conversation was about the kinds of support and help that were available, and did allay some of his fears. There was also a stress on the need for him to take good physical care of himself physically - as that would mean that deterioration of his memory would be slowed down.

I think the conversation though difficult -was a helpful one.

We had already set up a Power of Attorney, which helps us in terms of managing his bank account etc.

The Alzheimers Society Talking Point forum is very helpful

Id say you absolutely need to tell your mum as clearly as possible that she has dementia.
As for what you wish you'd done- asking about her future wishes re medical treatment. Asking about all the family photos. Seeing if she wanted me to always get presents on her behalf. Having a very honest chat about moving somewhere sensible. So many things, but my mums language was so damaged by the time she was diagnosed that she's never retained that she even has dementia.

My advice would be,,read as much as you can about this illness. You are in for a roller coaster ride, as your mum will likely go between quite lucid to displaying odd behaviours.

There are few things that some-one else won't have done, so their is lots of help available. My mum used To lay out sets several sets of clothes on the bed In the shape of people but she could not put those clothes on herself in the right order. Other posters told me that their parents did the same. It helps to know you are not alone.

As for telling her, and her right to know that is too personal for anyone else to advise. Some people are frightened by the words, and prefer to hear that it is just old age.

I'm not going to be much help on the 'should we tell her' question as my mum was diagnosed at a memory clinic and she and I were told together that she has Alzheimer's and Vascular Dementia - so we've never been in the situation of us knowing and her not.

But, there are a few things you should do or think about which may influence what you decide to do.

1. Do you have power of attorney? You should get it. I'm in the process of getting an attendance allowance for my mum. They've just called me regarding the form. Mum doesn't wander yet but does get muddled with money - handing me 20p instead of £20 for something for example. The woman on the phone asked if I had power of attorney as it sounded like I should get it sorted out quite soon. I confirmed that I had it already and had put it in place as she was diagnosed. If your mum is wandering it sounds like the Alzheimer's is progressing, like my mum's. One of the problems, if you don't get power of attorney, is that things like decisions about her finances or her healthcare are taken out of your hands if she can't manage. I know when we set up POA mum had to see her GP to ensure she understood what she was signing and why. I think, and I am sure someone will correct me as I am not 100% sure, that you can get a POA done by a solicitor so she doesn't have to see a GP but I don't know if your mum needs to still be involved in that discussion. If she does, she will figure out it's Alzheimer's related I guess.

2. Mum has had a couple of assessments to get extra help or equipment. She was asked during that if she knew what she had but they didn't tell her - just confirmed it. If your mum does have assessments to be booked asked them to call you to arrange them. You can be there and, I would think, you could explain to them that your mum doesn't know what's wrong with her. Ultimately, all the assessment is doing is deciding if she needs additional support or equipment. The outcome doesn't change whether she knows her diagnosis or not.

3. It is hard to keep Alzheimer's a secret sometimes. Mum tends to forget things, get muddled at appointments etc., It is much easier for me to step in and explain, quietly, that she does have Alzheimer's. Attitudes towards her change from 'oh for goodness sake, dopey woman' to 'not a problem. Let's try that again' once I have explained. Mum explains to people that she 'has that head thing. That makes you forget stuff' - cos she can't remember the name! Bless her!

4. We've also got a card which mum keeps in her purse. It was from the occupational therapy team and says 'My name is ....I have Alzheimer's and I need some help' and has my phone number on it. Hopefully, if she gets lost or confused someone will either see it or she'll hand it to them.

As I say, it is hard to know what to do regarding your mum. My mum was 'pleased' to get the diagnosis as she knew something was wrong. As the illness has progressed she seems quite settled with it. It's like the illness has taken away the fear, which is something I noticed with my MIL when she got it. She feared it for a long time as my FIL had it and she saw him go downhill. When she was diagnosed she was petrified. A few months on and she didn't seem worried by it at all

Things I wished I known earlier. Well, we've been lucky. I had an Admiral's Nurse who helped me get a disabled badge for mum. Handy for shopping when you may not be able to walk full distance across a car park. My Admiral's nurse explained that for dementia patients just walking and facing all the noise etc when they are out and about can make their head ache. They can be exhausted just by the effort of concentrating on something, which for us is so simple, like walking. If they are prone to wandering what do you do? Go and get the car - when they could wander off or try to cajole them into walking just a few more steps when they are so tired. Imagine a full grown adult sized toddler who has had enough. That's what some dementia patients can be like when they are tired. So a blue badge is a saviour for me.

I was also told recently I could apply for an attendance allowance. Just to get help with anything mum needs - like checking on her each day, keeping up with cleaning, cooking, shopping. It also opens up other benefits and 'should' make it easier to get additional help if she needs it as she has already been assessed.

If you call your local adult mental health team you can arrange an assessment as I've mentioned. They can advise you about aids (like my mum may need a medical box on a timer at some point as she is beginning to forget when her tablets are due) or getting a clock with a calendar to help her keep track of days. If your mum is wandering you really should try to get her an assessment as quickly as possible for her safety sake.

Using a day centre is a god send. Being sociable helps Alzheimer's. My mum has a communal lounge where she meets her friends in the sheltered housing scheme she lives in and she goes to the day centre each week. I notice a huge difference when she comes back from the day centre compared to her being alone during the day. She has gossip, wants to tell me things, makes things and is excited about things. When she was just sitting in her flat at the start of the diagnosis she seemed less vibrant if that makes sense.

She has good days when she is sparking and bad days when she makes me wonder if it is me getting muddled. That used to upset me. Now we laugh about her muddledness and accept that is the new mum. It is heartbreaking sometimes and funny at other times. The things she comes out with can make us laugh or cry for the mum she left behind somewhere - but she has changed and will go on changing and we just have to adapt. The old mum won't be back so we just try to enjoy the new one(s) as they emerge.

The Alzheimer's society forum is a great board. I have had great advice from people whose parents/partners are more advanced than mum and, even by reading some of the threads that don't really concern me (yet) I have learned a lot. Worth having a look at.

Good luck. It can feel like a lonely journey sometimes but you'd be surprised how many people are affected by dementia. Since I have spoken about it to people, I now know of 4 friends/acquaintances who have someone in the family with it.

Sorry if this is a bit gabbled and very long! It's hard to know where to start. But I suppose my ultimate bit of advice is, you know your mum. Your brother is right in that it will get harder to keep the diagnosis from her as she progresses but we've played down Alzheimer's with mum. As far as she is concerned it's something that confuses her or makes her forgetful. It's what she can cope with so we leave it at that rather than talk about what the future may hold for her.

Some of the answer to 'Tell or not tell?' will relate to your mother's own personality.

However, I think it is scary to lose your memory, to know you are not the person you used to be - and for there to be no other possible explanation than 'I'm going mad/crazy/whatever.'

I think for my father-in-law, understanding - though he can't necessarily remember much about the illness - that there is a condition which means there are some changes in his brain and his memory is affected - means that he is less scared. He's not 'going mad.'

He just has Alzheimers.

It's something relatively common. It's not his fault. It's not a weakness. Although there's no cure, there are various things that can help.

Perhaps it is easier for the person and their family. to access the help and the support, if people are able to acknowledge what it is that's causing the memory problems.

Rather than making it into a Big Scary Secret.

That's my personal view and experience.

Thanks all - I really appreciate everyone taking the time to write.

ZeroFunDame, I wasn't in the room when diagnosis was given but she got upset and left even before they got to that stage; one of my brothers went out with her to have cup of tea and my other brother and father stayed and heard the full medical details. We don't want to keep anything from her, just not to add to her fears if we don't have to. To complicate things my dad was recently in hospital with mini stroke and Mum was unable to grasp that despite being told gently lots of times; she said to me at one point 'Don't tell me too much.'

Thank you all for the practical suggestions esp. regarding Power of Attorney - we've got that in hand, and all your other suggestions Esmum07, v helpful.

florentina1 I think you're right in that everyone reacts differently - I can see a practical, can-do person wanting to know exactly what their diagnosis was but that is not my mum's character. Though equally I take your point MarianneSolong about not wanting to have Big Scary Secrets. We'll take our cue from her I think and take it all one step at a time.

Thanks everyone and good luck.

This has been my experience with my father, and of course i cannot extrapolate it to advise others what to do. I never use the words Alzheimers or dementia with him. By now, he is very impaired so it's not really an issue anymore. When he was diagnosed, the psychogeriatrician told him he had Alzheimers but I was not present (I got cc'd in on the correspondence, that's how I know) I used to talk to Dad in terms of " your memory is not so good these days... you have trouble remembering that". As a proud man, he accepted that. My Dad grew up in a time when illness was taboo, and especially mental illness (which I think AD is classed as). Talk of diagnoses, psychiatric services etc would have scared him and been counterproductive, so I have preferred to keep things symptom based and solution oriented, rather than worrying about labels. It has been the least worst option for us.
Finally I believe that even with dementia, people can choose to reject what they don t want to hear, and i believe Dad did this with his diagnosis wherever possible.

People have the right to be as informed as they wish to be, no more no less. It takes time to process the impact of a big diagnosis. Don't rush it and be guided by what your mum needs.

I suppose my question would be how do you balance the needs/feelings of the carers against the needs of the person with dementia?

Carers and relations might be people who are uncomfortable with secrecy and whispers.

It can be very hard work indeed looking after someone with Alzheimers - trying to keep them safe and health and as happy as possible. I think not being allowed to say what is going on can make a hard situation even harder.

Not that I recommend shoving unpalatable facts at people in an unnecessary way.

My father in law will say in a puzzled way, 'Why can't I do this any more? I used to be able to do this.'

And we'll say because you have a problem with your memory. But because we discussed Alzheimers at the start, it doesn't feel like a lie or an evasion.