General Chat

when somebody says it's dementia.
So how do you cope?

You don´t to begin with, because it may be wrong, they say you are not alone but you are. It´s only you can make you believe.
You find yourself saying it´s difficult and it is. It´s hard and bruteful and totally spiteful. You make excuses for their behavour even to yourself, but sooner or later you have to listen to yourself.
It is difficult and it is heartbreaking and yes you are alone. It´s your decision to understand.
Once you have then every other person either knows a dementia person or has a relative. Do listen to them and allow the friendship that they offer.
Will it make it easier, probably not but it will help eventually.

So how do you cope ...me I have no answers I will let you know eventually when (not if) I get through this.

Are you talking about your mother, Uzzi, or yourself?

Huia.

The only advice I can offer is:

Mourn the personality that has left and celebrate the one that has arrived.

Sue xx

Good advice Sue, I'd say the same and add, take all the help on offer.

Its very hard. There stand a person that you recognise, but you no longer know. Everything they stood for has changed, what they are is completely different to what they were.

Its even harder when you loved the person they were but find it hard to love the person they have become.

I think thats okay, Dont feel you have to - sometimes you just cant.

Take one da at a time, and just get throught it. I truly believe a person with dmentia doesn't realise what they have become.

(( hug))..... its hard

Sadly Huia. it´s my mother I am talking about ..it would be easier if it was me cos I would just forget again.

Oh well

Get stuck into the practicalities. My dad shipped in a batty old bird. We had always known her and her husband died at about the same time as my mother did.

She needed looking after, she had already propositioned the vicar, and the old man needed somebody to look after.

She kind of moved in, although her home was down the road and he looked after her until she was sectioned.

Make sure you can contain her if needs be, otherwise you will be constantly chasing around the district after her. Little things like making sure she can't use the kettle alone or put on a pan when you are not watching. You will soon find you are too busy keeping her in sight and safe to have time to worry about the emotional bit.

Uzzi...you must realise now that all she has said to you she did'nt mean!! That does'nt make it any easier l know, but it was'nt really your mum.

My lovely friend has alzheimers, diagnosed aged 55yrs approx.....its not her anymore and l don't really want to see photo's of her as she is now. l want to remember as she was. For you that is different l know, but maybe the time has come where you need to find a residential home for her and you can visit and try and take the strain and stress from you.

Take care.

jude xx

One thing I will say to you Uzzi is be kind to yourself, you won't always do and say the right thing so don't beat yourself up about it.

One of my mothers carers said to us not to worry about correcting mom when she got mixed up about things as it just made our visits with her more stressful so quite often I became her sister or cousin or whoever she thought I was at that time. This was quite late in her dementia so further on than your Mum .
I hope that your mum stays well and that you can continue to laugh about the trials that may be ahead for you both. as I use to say to my friends If I don't laugh about things I'll cry and I don't look good crying.

Good luck.xxx

Its very hard when you love someone .but they dont know who you are .your mum is in her own world .just be there when you can but dont get to upset .the relatives are the one in pain .as they can see how people use to be .My Dad had altziemers & i looked after him he lived on his own .at first .went to day care had home care in .but there comes a time when they need 24/7 care .I visited him every day .but i went home knowing he was safe & cared for .Take care Uzzi one day at a time .laugh with your mum remember the good times (((((hugs ))))))) to you All Barbra

It is hard Uzzi, devastating.
We go through life knowing the word but not really knowing the implications.
Then it hits. Big time.
Then we think 'why am I so unprepared for this?'
'Why hasn't anyone ever told me about this?'
Eventually we think 'why would I burden the young and carefree with this sort of knowledge?'
You feel alone but you come to find you are not.
It's a massive learning curve but you will cope.
Be kind to yourself and accept help.
Don't try to cope on your own, you are no good to anyone if you wear yourself out. <3

It is hard, even for those of us who have had a good relationship with our parents.

In addition to the advice and insight already given, go along with them if they start talking about odd things. Sometimes they are actually trying to tell you about something that has happened recently, but the words get muddled or get put into a wrong context. My mother in a moment of clarity, said that her mind was like a fog; she could 'see' the words she wanted to use, but couldn't reach them.

If they are agitated, then agree with them - yes, the cat is perfectly safe and you've just fed it, even if the cat in question was their own mother's pet.

It helped me to write long emails to a good friend, just as you do on GR. The difference was that I needn't pull any punches when expressing my frustrations etc etc. as I knew I wasn't going to be 'judged'.

It is difficult and there is no quick fix. Just make sure you give time for yourself, your dogs and your OH <3

I hadn't seen my dad for years, then he returned to the UK, and I started to get to know him again, He'd remarried, I visited him every couple of months with my chlldren, and we went for long walks.
Then he was diagnosed with lymph cancer. that wasn't the problem, the resulting brain tumour was. He neither knew where he was (hospital) or why. He thought I was my mother. Chemo made him put on weight, and lose his grey flecked jet black hair, it grew through clumpy and grey.
They had trouble getting his drug dosage right.
Once when I visited him, I was told he had got out of bed in the night and dismantled the toilets. 'Has he put them back together?' was my question. 'No' I was told. 'Oh so there's somethng of my old dad still there' I laughed - much to the consternation of the nurse!!
The next time I visited him, he seemed to be looking for something. When I asked him what, her replied 'My fan'. 'What do you need a fan for dad?'I asked.
'Because I'm the King of Ethiopia' he replied. My response?' Bloody good place to be dad'. I'd lost my father, but found the King of Ethiopia!!!

It wasn't dementia, and it didn't last as long - dad was dead within 6 months, after lapsing into a coma, but before the coma, I just accepted his new persona, he wasn't my dad, but was a very genial king.

Uzzi, I am so glad it isnt you who has it. I thought it was probably your mother, but it was always a possibility that you had developed it. When my husband was diagnosed with it I accepted it, taking things one day at a time, but it eventually got to the stage where I could no longer cope due to lack of sleep, and the fact that he had started doing things that were potentially dangerous. My son and I decided he needed to go into care, although I hated doing it to him, but it was either him or me, and if I had had a breakdown he would have had to go into care anyway.

Now that he is in care, and magnificent care it is too, I have rebuilt my life around visiting him once or twice a week. The place is an hour's drive away so I feel I cant afford to go every day, anyway it seems he no longer knows who I am, and often just sleeps when I am there. I still love him, but I wont be upset when he dies, as I know he never wanted to go into a rest home and would be horrified if he had realised how he would finish up. It just isnt the old Him any more. When I am not visiting him I am busy with other things like working in an op shop, and visiting my gt grandson and playing on my computer! I can do what I want when I want without having the worry of looking after my husband.

Take good care of yourself and let others care for your mother. You will be much happier whenever you see her.

Huia.

Uzzi
It is always hard when you get this diagnosis. You will haviing a grieving process as you realise the mum you knew is no longer there but as others have said take each day as it comes.
As a Dementis Carer I was trained to just go with the flow and be who they say you are, never try to bring them into our world as you will just get resistance. Join mum in her new world when you visit it is easier on both of you. You will find she will have lucid days when all seems well and days where she doesn't know who anyone is.

Most of all take care of yourself , if she is in a care home she is safe when your not there.

Hugs xx

Hi Uzzi, if you do now have a definite diagnosis at least you will know where you are with your Mum, and you can deal with things accordingly. I know things haven't been easy with her for a long time so it's not going to be like it's a big turnround in her behaviour, but still very hard for you to cope with altho it's good that you have her nearby and you can go back to the UK and sort things out as planned while you also deal with the situation your Mother is in now.
It will be a struggle for you, and I hope you have support whereever you can get it both in UK and in Spain.

Don't feel guilty, you have no reason to, just try to take each step at a time, each day as it comes when you can, and be kind to yourself. Know we are all behind you and you can come on here or pm some of us if you need to offload, am always around at night as you know.

Take care, best of luck and hope your Mum stays physically as well as possible so you have no further worries other than the practicalities of making her safe and secure and well looked after.


I will be thinking about you,

love

Lizxxx

Hi everybody,

As yet the diagnosis isn´t official just the nurse who works for the care company that Mum has and some friends she met on holiday who are 2/3 stages infront with their mother. But I have to be honest I have also thought it.
When I get back I shall have to get her accessed. Not going to be easy as Mum says she is fine etc. but I guess for me at least having it "official" will help in some way.

Unfortunately the mood swings, nastiness and mental/verbal abuse to me are not just part of the illness but something that is now just more obvious that has been happening for years. I guess that´s why I didn´t twig earlier, I´m so used to it.

I guess the hardest part is yet to come getting Mum to understand and taking it all onboard myself. I don´t doubt what the outcome of an assessment will be, but Mum will never believe it. I wish now that I had pushed last year for her to sell up and get settled somewhere, rather than have to cope with her and her house.
I´m trying to pack up and trying to work out what she will want, what she will miss and basically what the hell am I doing. I´ll end up shipping everything out to Spain just to sell it for peanuts, but as she is she has to be allowed to chose.
Mind the night I spent with her in the hotel she kept out 4 different outfits for the evening and in the end didn´t change :-(

I´m sat here looking at all her memories her jade ornaments, her 3ft giraffe and an accumilation of 30+ years and wondering where do I go from here.

Huia had it been me I think I would cope better, because at least I wouldn´t be the one trying to pack everything up...anyway think of all the new friends you can meet when stage 2,3and 4 have passed you by. ;-)

Stay safe everybody and thankyou for answering.

http://allnurses.com/geriatric-nurses-ltc/experience-dementia-journey-118438.html
Someone passed this on to me. It helped me to understand a little better my Dads dementia.
xx

The hardest part is accepting that what you have suspected for some time has actually been confirmed.
Have a good cry if you feel like it.
Dementia/Alzheimers is so difficult to anticipate because the person affected can´t say if they were aware of any symptoms coming on. It´s dependant on other people to notice & they are naturally reluctant to accept what´s happening.
Must make research really difficult.

MY MIL developed dementia during a long stay in Hospital . she was in 2 hospitals for over 6 months in the 1980,s. we used to visit every Sat as it was 30 miles away and both of us worked. She confused me with another family member and asked how ??? was I was taken off guard and puzzled and tried to correct her& she got agitated so I left it.

Another time she asked how my mum and dad were but they had passed away in 1975 and 1980. I didn't try correct her . I said they were fine and she was satisfied.

She did recover from her illness and eventually came out of hospital but she had changed . she was always very fiery with her Irish temper !! but she got a bit obstreperous and ddi take against our daughter when she didn't ring her,as she thought she should have, before going to Germany with the Army. Hubbywas in the Army, Despite the fact daughter wasnt on the phone and only stayed overnight at ours on route after a long day of travel getting to us late evening and going immediately to bed and we up and out at 7am to take her to Harwich to get the cross Chanel ferry.

When mum and dad had their golden wedding our daughter had flowers sent from Germany and MIL sarcastically commented I dont know why she bothered!! Thats was one time in over 30 years I nearly fell out with her and had to do a big bite my tongue.

She did have a nasty way to her after her illness and it did take some ignoring . I never wanted to fall out with her but came mighty close sometimes ,