I'm a beginner

[blackmountain]

Hi. I'm very new to all this and brand new to the list.

My mum is 83 and been living independently successfully and fairly happily for over 30 years since my dad died. She had become a bit forgetful and repetitious having 'slowed down' a while ago, but things changed dramatically four weeks ago when she was found to have wandered down the road with a case full of her things in search of her home.

We (I have 4 sisters) went from regular family visiting to organising morning and evening carers, but she wandered again with a suitcase in the evening time after dark. This was completely out of character. This time she got across a main road and was fortunately picked up by a kind girl who was driving past and realised she needed help. My mum remembered her address, but she is really struggling with the concept of her own home, often asking 'where am I?'

The complicating factor is that her insight changes abruptly and she can get very resentful of being organised and her privacy invaded. So in one moment we agree an plan of action and then a short time later we get resentment and aggression for what has been agreed. Our aim is to help her stay in her own home, which is what she has always wanted.

We don't feel she is safe on her own for any length of time, but she is not keen to have anyone not family in the house. We have come to the end of a week with an experienced carer who has found my mum very hard to please, and resistant to doing any personal care. We have an agency booked for a month's trial, but are starting to wonder if this is the right road to go down now.
She has had a psychiatric assessment but all the rest of the wheels are grinding slowly and the consultant is not keen to start Arricept without a guarantee of compliance which is not realistically likely as she has always avoided doctors and medication. The consultant is willing to start Mirtazapine which may be quite calming if she will take it.

We are investigating door alarms that might enable her to be left for longer periods. Practically and physically we can't be in her house 24/7 even between 5 of us, and she doesn't seem to want that anyway.

I would just be grateful for any advice. What are the consequences of further wandering, with police, social services, etc.?

Thanks

 

[DickG]

Hi Blackmountain.

Firstly ther are no consequences to be feared from the police and Social Services, they have seen it all before and in my experience are sympathetic and helpful.

It would appear that you all need help and although help from social services seems to be patchy it may be the best place to start and hopefully your experience of them will be as positve as mine. Approach them as the professional they should be and appeal for their help but remember that you are entitled to have your views respected and taken into account.

We are all familiar with changing insight and I employ lies and deceit to achieve an outcome that is in the best interest of my wife. This is a dirty busines but as long as you can place your hand on your heart and say "What I am doing is in the best interest of all involved" you will not go far wrong.

You must do what you think is right and yes you will make mistakes, we all do, but that is no excuse for not trying.

Welcome to this rocky road and remember you can always call on TP for support.

Dick

 

[christine_batch]

We have to wait too long for treatment for our loved ones.

Hello Blackmountain,
Welcome to Talking Point. You will find so much support and advice on here. It is like the "Windmill" never closes.
Could you contact your local Authorities ? There is A Community Alarm system. Contact your Local Alzheimer's Branch , and writing every concern down in letters to the Doctor and Specialist. Unfortunately, in my personal experience, woman are the hardest to accept help. As a disabled person, who had cared for my husband with A.D. when he was diagnoised at 58 and now is 62 in a E.M.I. Unit, I would not let go, although I knew 2 years ago Peter should have gone in. We all start off as beginners but with the support of friends on T.P. you will get so much support. I have.
I wish you the very best. Christine

 

[sue38]

Hi Blackmountain and welcome to TP.

If you have read some of the posts on TP you will see that 'going home' is a common concept (my Dad has lived in his present house for over 40 years but still wants to go home to where he lived 50 years ago).

Wandering is also a common problem and there are various ways in which you can try to manage the situation, varying from identity cards with contact numbers and details of your Mum's condition (I can send you a PM - personal message- of the web site we used) to tracking devices and alarms that will alert you and/or a private firm should your Mum wander out of doors. Sadly none of them are a guarantee that your Mum will either stay put or will take the tracking device/card with her should she wander.

When my Dad went missing the Police were excellent, treating him as a priority because of his condition and showing an understanding of dementia which both surprised and delighted me.

We have so far been largely ignored so far as SS are concerned.

Getting your Mum to accept she had a problem is another thing altogether, and a problem I have yet to crack with my Dad, but you will find that we all work together here and I'm sure you will get lots of good advice.

 

[Sandy]

Hi blackmountain,

It sounds like you and your sisters have had a steep learning curve to cope with since your mum's first wandering event four weeks ago.

Sadly, assisting someone with dementia who lives alone to remain in their own home is one of the hardest balancing acts to accomplish. Once that person fails to recognise that home as their own the door is open to wandering and all the risks that this behaviour involves (especially during the winter).

It sounds like you have put a very sensible plan in place to try and see how home care will work at this point in time. Is this 24-hour care? Some agencies offer an awake night sitting service.

The problem is that if someone has lost their bearings so much as to not recognise their own home, they may not respond well to a stranger trying to keep them in that home. All a carer could do in that instance is to call a family member who might be able to convince the person over the phone to stay put.

At least you know that you are trying your best to support your mother in her home.

I would also try and push for medication as it might produce enough of an improvment to stop the night wandering (does the consultant know about this behaviour).

Take care,

Sandy