Advice Please

[SAF]

My mum was diagnosed with Alzheimer's approx 18 months ago. At first it was just little things - she didn't understand how to use the cableless phone, misplaced things. Now its got worse. I looked after her for my dad last night as she decided she didn't want to be on her own as he had to go out. Most of the evening she couldn't remember my name, she kept getting confused as to why she was there, where dad was etc & at one point told me she didn't know where her family had got to as they knew we were coming - she was at my house. I found this to be very distressing and am unsure how to react to her. Do I tell her the true facts or go along with what she is saying?

Anyone that can give me advice would be much appreciated.

Thanks.

 

[Grannie G]

Hello, SAF,

Do I tell her the true facts or go along with what she is saying?

It depends what your father tells her. Even though your mother possibly won`t remember, it might add to her confusion if she hears two different stories.

You would be best advised to have a good talk to your father and ask him what approach he takes. Then you can take the same. It will give some stability to what your mother hears.

 

[SAF]

Hi Grannie G

Thanks for that. I agree, it probably would be best to discuss it with dad. He tries so hard but I get the feeling he does sometimes struggle & does snap at mum on occasions. I often get the quote 'I have this 24/7'. She goes to a day carehome twice a week now which gives dad a rest & she thoroughly enjoys it - her little job!

Its so hard seeing her like this when I remember what she used to be like & how clever she was & now its hard to have a conversation with her.

 

[Mameeskye]

Hi Saf

I used to think that it was far more difficult in the early days when Mum used to lapse into and out of confusion. It will be difficult and I would agree with Granny G that speaking to your Dad in the first instance to check you get consistant messages across is important.

If you find that your Dad doesn't have any ideas for me little white lies could work best if Mum was in an agitated state. If she was happy within her confused state we just let it roll but sometimes we did have to bring her back to the truth eg when she was getting upset with me for not being in the car down to attend Dad's funeral..I had been there, only thing was it had been 5 years earlier!!! SO it was a gentle reminder and a change of subject.

Once in the home during sundowning periods if she was agitated we would try and arrange a table as we would have done at home and sat and had a cuppa and blethered trying where there was an upsetting topic to change the subject to something more pleasant e.g. look at the daffodils growing there.. etc

It is not easy. You can only do the best that you can do.

Mameeskye

 

[Grannie G]

Just for the record SAF, when you do have `this` 24/7 it would take the patience of a saint not to lose it occasionally.

Please don`t be too hard on your father. However hard it is for you, it`s even harder for him. Not only has his lifetime partner become totally dependent on him, she is no longer a partner. It`s a very lonely place to be.

Take care xx

 

[sue38]

Hi SAF and welcome to TP.

My Dad was diagnosed with mixed dementia in December 2006. On many occasions he presents quite well, but I can't remember the last time he called me by my name. I am not entirely sure if he still knows I am his daughter. He knows he knows me and (most of the time) quite likes me, but whether he really knows who I am...

It may be that your Dad has been covering up just how confused your Mum is or it may be a change in routine (i.e. spending the evening at your house) that has disorientated her.

A few weeks ago my Mum and Dad came to my house for a meal one Sunday night to give my Mum a bit of a break. I have lived in the same house for 14+ years, and my Dad last visited just before Christmas. He kept saying how strange it was to be back "after all this time"; that he used to come here "years ago"; and asking who was it who used to live here? I think he remembered that someone he knew used to live there but hadn't realised that the person standing in front of him was the same person. As you say it is distressing.

I agree with Sylvia that you should talk to your Dad as to how he copes. In our case I try to gently put him right, but if it is causing more confusion, or to become upset, I just change the subject e.g. "Isn't it a lovely/awful day" Fortunately the weather has always been one of my Dad's favourite topics of conversation so he is easily distracted.

I was reminded recently that asking a dementia sufferer to 'see sense' is like asking a blind person to see. It does help to put things in to context.

 

[sue38]

Just for the record SAF, when you do have `this` 24/7 it would take the patience of a saint not to lose it occasionally.

As children of sufferers, and particularly where we are not the main carer, it is all too easy to criticise the main carer.

Today my sister rang my Mum who was extremely distressed that she had come home to find my Dad had emptied the contents of one of the closets all over the landing and was standing on the landing wearing only his underpants and a sun hat! My sister and I couldn't help but have a bit of a giggle when she came off the phone, but my mum couldn't see the funny side.

Once I had regained a straight face I rang my Mum. She told me she had screamed at my Dad and he was now very subdued. He was looking in the closet for something which isn't kept in there. I pointed out to my Mum that he wouldn't remember that it wasn't in there. Easy for me. not so easy for my Mum who came home to chaos. I have offered to go round and help put it all back.

 

[SAF]

Thank you all. Its a relief to be able to discuss this with other people who understand what's going on.

I am not hard on dad & try to help him as much as possible. Mum could have been disorientated last night as usually she comes round with dad & not on her own. She certainly didn't understand where he was.

S
x

 

[Grannie G]

.

I am not hard on dad & try to help him as much as possible.
x

Please don`t think I was being critial. I can understand how upset you were.


Sue, I know where your mother`s coming from.
When Dhiiren `loses` something, he doesn`t even realize he`s turning the house upside down looking for it, and I`m following him around straightening and putting back into place all the things he displaces........cushions, pillows, matresses, drawers, wardrobe contents...............you name it, it`s been turned upside down and inside out.

 

[sue38]

I have just seen my Mum and tried to be sympathetic and keep a straight face, but failed miserably, collapsing into giggles again. Fortunately she has now started to see the funny side too. We realised that they keep suitcases in that closet, so that combined with the sun hat and lack of clothes might be a sign he fancies a holiday...

 

[SAF]

Please don`t think I was being critial. I can understand how upset you were.


Sylvia

Don't worry, I didn't think that at all. Its difficult for everybody. Thank you for your support.

 

[SAF]

Hi everyone

After our discussions, I have finally managed to have an opportune moment to have a chat with my dad. I was overjoyed to hear he has now become a member of the AS & goes to a support group every Tues pm which is when mum is at the day carehome. Someone from AS came round & helped dad to fill out an Attendance Allowance form for mum, so we will see what happens with that.

Dad told me that mum has recently had two episodes when she didnt recognise him. The first time she asked who he was & the 2nd time thanked him for being such a good friend to her as her husband had died some years back. Dad was obviously very distraught.

I'm hoping that now dad has finally accepted that he needs help & joined the AS it will help to help him - if you see what I mean???

 

[sue38]

Hi SAF,

I'm pleased to hear that your Dad is getting help and support from his local AS group. I think their help, particularly with filling in the AA forms, will prove invaluable.

It is distressing for a child not to be recognised, but for a partner it must be so much worse.