Should we tell her

[maggier]

Hello

Mum at present does not think there is anything wrong with her, and keeps saying, "I am not daft you know" and things like this.

Along with her very bad memory, and her obsession with moving things around and losing money and belongings in the home, she now seems to think someone (or something) is coming to get her and she says they are upstairs (she lives in a bungalow and there are no stairs). She thinks things are behind pictures and we are slowly removing all the pictures from her walls. She seems to think that the pictures are holes for things to get in through.
She is due to have a home visit from a Dr from the Department of Psychiatry of Later Life for an assessment and I am worried that the Dr will be very honest with her and say what is wrong with her.
Is it fair of us to protect her from the truth or do you think she should know. I worry that if she knows she has AD/Dementia she will just give up. She talks quite alot about wanting to be with my dad who died 5 years ago. She says regularly that she won't be here for much longer, so part of me feels she has given up already, although she is as 'fit as a butchers dog' physically.

Any advice would be greatly appreciated.

Just a note, this site is fantastic,! Just reading other posts is helpful and informative and I truly feel that everyone really cares about each other as they/we are all going through the same thing to varying degrees.

 

[inmyname]

My Mother also insists theres nothing wrong with her or her driving and its the rest of the world thats mad

Even her 7 yr old great grandchild said Old Grannys very confused

 

[Lynne]

My own opinion is that you cannot (and should not) "protect her from the truth".
If the Dr/Psych. is very honest with her and tells her what is wrong with her, that means that YOU will not have to do so**. But I doubt if he will be so blunt, they aren't usually. I expect you will be consulted, and my opinion would be that you ask the Dr. to tell her what is happening with her health.
**(and if you did try to, do you not think that the emotional nature of the conversation would leave essential things un-said? That would put you all in a really confused & distressed state of affairs, as opposed to just your Mum being confused. You would not know how much Mum knew/understood of what was happening to her. She might be afraid to ask questions, because she knew everyone would be likely to get upset).

It might actually be easier for her to take, coming from the doctor, in a more formal 'consultation' encounter, without that emotional turmoil at that time. Obviously family discussions will follow on, in which you & your brother can assure her of your support, and that you will always make sure that she is safe and cared for, but if you can get a clear diagnosis by the doctor - along with some information about AD-meds. which may slow down the rate of decline, relieve depression etc., I would grab that with both hands.

If you with-hold the diagnosis from her now, whilst she may be able to understand it, how and when will you be able to tell her when she is less able to do so? At present she may be still able to take part in decisions about the future; make a will; appoint you (or whoever) with Enduring Power of Attorney to look after her affairs if she becomes unable to understand that bills need to be paid, cheques written, agreements signed etc.

With regard to her comments about wanting to be with her late husband, try to take a step back (emotionally) from the way you are thinking about that. Whilst you are now focused on HER, she is still grieving at the recent loss of her life partner. BUT, you are not attaching the same emotional significance to the facts that she talks about stairs in her bungalow, or is ascribing the qualities of windows to pictures, or thinks there are people in her home. Certainly they indicate confusion, but not a death wish.

The above are opinions, not advice. I am in a similar position with my own Mum, not quite as confused as yours, but moving that way, so please don't think I am being hard or unsympathetic.

 

[Kathleen]

Maggie

This is a tough call for you, but I can only tell you about my Mum's diagnosis.

Her Dad had a form of dementia and Mum insisted that if it ever happened to her she would jump under a bus.

However when she was diagnosed the Psychiatrist told her it was AD and she seemed relieved that there was a reason why she was feeling so confused and frightened etc.

Hope this is of some help.

Kathleen

 

[daughter]

Hi Maggie,

As Nada says, this is a very personal decision. In my Dad's case he was already at the stage where even if we, or a doctor, had told him he that had Alzheimer's or dementia, he would have said "what's that?"

Every time we were waiting, when he went for a scan or a visit to the doctors he would ask why were we there, over and over again. Mum would tell him, "it's about your memory", but I'm not sure he even comprehended that - unless I'm just fooling myself because I don't really want to believe that he understood? No, I'm pretty sure he didn't understand because of his reactions to explanations about some other subjects. Sorry, I haven't been much help, I can also see other's points of view that it's best to explain it but I guess it all depends on your own circumstances.

 

[Worried Woman]

Maggier,

If it were my mother I would want the doctor to tell her the truth. The only thing is that I doubt that my mother would believe him.

At the moment my mum is in the confused, losing things/hiding things state and of course says there is nothing wrong with her.

I need to get her diagnosed if possible to enable her to get some kind of psychiatric evaluation and possibly medication.

Could you tell me how you got your mother to accept a home visit when she says there is nothing wrong? Did you start with the GP? I can't even get my mother that far.

Good Luck.

 

[suptowngirl]

Should we tell her?

Hi Maggie,
My mom is at that stage where she is ( putting things in safe places ) and forgetting where they are. Also hallucinating. Last week she was watching The Bill and there must have been a scene with violence in it, she thought they were in her house and that they were going to wreck it. She was surprised that " when they had gone nothing was broken "! My mom is on medication to help with the hallucinations but obviously it doesn't stop all of it.
When we realised mom was becoming ill, we told her we were taking her to see a doctor who would help her mind and try to get things back to normal. She knows she has A D but I don't think she knows exactly what it is.
It is your choice whether you do tell her, it may help at this stage for her to understand a little about why she is behaving in this way.
Best Wishes and My Thoughts are with You.
Suptowngirl

 

[Amy]

I clearly remember the day my mum was told about her dementia, a lucid moment and she sobbed that she hadn't realised that there was anything wrong with her. It did mean though that we could openly talk about the illness. She would often behave very oddly on an evening, and have some recollection the following morning, and it helped that we could say that it was the disease and not her. We could also reassure her that we would be there to support her. I think that in the early stages both the sufferer and relatives try to deny that there is anything wrong because it is too horrible to face.

I don't know if this is of any help.

Amy

 

[Jude]

Dear All,

To tell or not to tell? It's a very hard call.

As most of you probably know, both my parents have AD at varying stages.

I decided to tell my father that he had AD because he kept asking me why he was so confused and forgetful. He was also very concerned that he was having hallucinations and behaving 'out of character'. Dad's symptoms of AD are more like vascular dementia in that he has times of great lucidity, so we talked when he was feeling 'good'. He was pretty shocked at the time, but also very pleased to know that he wasn't 'going mad' [his words]. It gave him a tremendous sense of relief to have a 'label' to pin on his feelings and he no longer felt so frightened. In his case, it was the best thing to do.

In my mother's case, I decided not to tell her, although I did tell my father that she also had AD. Mum has no fear of her symptoms because she simply doesn't understand any longer and is perfectly happy most of the time. There would have been no point in upsetting her even for a minute.

The positive benefit was that Dad became more focused on Mum's AD than his own and became more protective of her. He now guides her through meals and the small things that he does, such as reminding her to put butter on her toast before the marmalade, have helped to keep his daily living skills in better working order.

I hope this will help a little.

Jude

 

[May]

Maggier
It's a very personal decision I think as to how much or how little the person with AD needs to know. My Mum exhibits all the behaviours you describe in yours, and these came on extremely quickly. We've never said this is AD but try and use the memory problems she knew she had to explain the problem if we can when necessary. At the moment she is having very bad hallucinations/delusions, I don't know which, most evenings, these are raising memories from over 60yrs ago which transport her back to that time as though it's today. When she is coming out of this state she looks for re-assurance and we've found at a certain point (and we can only watch and wait for it to come) if we talk gently to her about the brain cells not making the right connections and if she can relax they'll start joining up again, and it's all about how her memory's working she accepts that and it calms her. In Mum's case she is confused most of the time and we didn't think she would take in a diagnosis, she has no short term memory, and to have to keep repeating that it was AD would distress her more, hence the decision.
As I said, a very personal choice and not an easy one.

Thinking of you
Best wishes