I never thought it would be like this.....

[MrsChristmas]

Hello everyone

I posted a new thread about driving yesterday and my aged mum and received loads of support and lovely suggestions of applying shed loads of wine and chocolate liberally which I have taken to with gusto. I am still recovering from my mother's blistering attack over the telephone about a letter from the DVLA.

I am beginning to have an insight into the challenges of this dreadful disease and I now realise that we are only at the first post.

This morning I had three voice mail messages from mum asking where I was and that she had not seen me for ages (I last saw her on Sunday) so, with some trepidation and I called in to see Mum today and she was absolutely fine, her old self in fact. We chatted about this and that (mostly her old friends from about 20 years ago but I am used to it and have learnt to go with the flow). It was a great, just like old times and she was so different from this angry woman yesterday. She talked about the letter from the DVLA and has come to terms with the fact that she may not able to drive. My brother has agreed to help her fill the medical form in but he tells me that he will not lie on her behalf. He is having to do a 200 mile round trip to visit and get the form done for her. I have tried to persuade him not to do it but he says that there is no evidence that she has got dementia and understands her need for independence so no support there, even though he totally agrees with me.

What I find so tortuous is the damage that it does to me afterwards when Mum is so nasty and horrid (which I have never seen before). I could not sleep last night because I felt so bad. Today, I feel great because mum is okay and friendly.

I try to remember that it is the disease talking not mum and I try to not think too much about the future but I do find mum's mood swings quite hard to deal with.

Both my brother and me are constantly reminding mum of different dates and times because she cannot remember anything. I have now taken to writing things down for her but she loses the bits of paper.

I was wondering if anyone could tell me, in their experience, how long this stage lasts for (bearing in mind mum's advanced age) and what I can expect to happen to mum over the next few months.

What will happen once mum is diagnosed? What is the criteria for mum staying in her home? At what point do we have to decide about carers, care home?

Mum has deteriorated badly over the past few months, quicker than I expected.

When I went to see mum today she was wearing a jumper with stains on it. Mum normally dyes her hair but she has let it go and it is now growing through white.

Any advice or support would be gratefully received.

Regards

Mrs C

 

[marionq]

No one can give you an answer to those questions. That is one thing I have learned over the past three years - unpredictability. Other health issues can change everything, gradual decline, sudden decline - these are all possible outcomes. That is why it is so hard on the carer - there is no way to plan ahead with certainty either next week, month or year. You just have to take each day as it comes as the old cliche says.

 

[MrsChristmas]

Hello

No one can give you an answer to those questions. That is one thing I have learned over the past three years - unpredictability. Other health issues can change everything, gradual decline, sudden decline - these are all possible outcomes. That is why it is so hard on the carer - there is no way to plan ahead with certainty either next week, month or year. You just have to take each day as it comes as the old cliche says.

Hello there

Thank you for responding to my post.

Kind regards

Mrs C

 

[fizzie]

Hi Mrs C

Trouble is dementia catches us unawares and unprepared. My Mum lived very close to us and I noticed a similar deterioriation to you - stains on jumpers, missed appointments etc etc and she became very frustrated and a gardener took advantage of her financially (so vulnerable) so we shifted gears and i managed lots of things for her without her noticing and applied for attendance allowance- washing, TV programmable, etc etc and eventually personal care disappeared and we needed the help of the continence nurses who were fantastic, I needed some help so we had a carers assessment and I got several hours a week and then I employed a carer for an hour a day to do morning personal care - by the end I was doing 5 visits a day and we had a carer each morning and 3 nights a week and my Ma came to supper every evening and went to lunch club 4 days a week. A LOT of support - but we made it through to the end. Uncharted territory - a bit like no manual for child rearing but this is all compacted into a few years and the manual is here on Talking Point and carers forums.

It's all about playing it by ear and asking for help - ask, ask, ask.
Thinking of youxxxxxxxxxxxxxxx

 

[fizzie]

sorry I forgot to say -- the blistering attacks often come from fear and are definitely dementia controlled - I got used to them and my teens were totally immune. You will get used to them too and there will be a day when you realise that one has gone right over your head and you have turned a corner xxxxx Keep going, one day at a time xxxx

 

[MrsChristmas]

Hello again

sorry I forgot to say -- the blistering attacks often come from fear and are definitely dementia controlled - I got used to them and my teens were totally immune. You will get used to them too and there will be a day when you realise that one has gone right over your head and you have turned a corner xxxxx Keep going, one day at a time xxxx

Hello Fizzie

Thank you for your really helpful reply.

Can I ask how long was it before your mum became incontinent/dependent - from being just forgetful? I know I cannot ask for time scales but as my mum seems to be deteriorating faster than average it would be helpful to know (roughly) what to expect long term.

At the moment mum can prepare her own meals and is looking after herself reasonably well and will probably just need support for shopping and so on. What I have noticed how unaware mum is of herself, she used to always keep her hair nice and her clothes immaculate but now she wears such random clothes with stains on.

She used to spend hours watching tv but now when I see her the tv is off and she has stopped reading newspapers and doing her crosswords. She rarely goes out now and even refused to go with me to walk my dog which she used to love to do. She has stopped seeing her friends and found it real effort to write her Christmas cards and I got her presents for her and wrapped them. I guess at 90 everything does become an effort but this is not mum.

My brother has already been looking at care homes (which we agreed was way too premature) because he is convinced mum is going downhill fast and is only 'firing on one cylinder' (his expression).

Mum has lost a lot of weight and is now only 6 stone and I am not sure what she eats everyday.

Do you think that things will change once she is diagnosed or will it be up to me and my brother to drive things?

I know that I must take things a day at a time but I would like to be as prepared as possible and be proactive rather than reactive.

I cannot get her assessed by Social Care until she has been diagnosed with AZ/Dementia and they have told me that mum has still mental capacity and that there is a limit to what they can do.

My father collapsed at home with a fatal brain tumour and I got very involved with that and he died 3 months later. The signs were all there but he refused to go to his GP. Mum has refused to go to her GP to get diagnosed and I am not even sure she will go to hospital to the memory clinic when the appointment comes. I would really rather try to avoid mum going through what dad went through.

Mum is just burying her head in the sand at the moment, she is convinced that it is old age forgetfulness.

Anything that you could share with me from your experiences would be most helpful.

Thank you

Mrs C

 

[canary]

I rather get the feeling that your mum has been hiding the symptoms from everyone (they are often good at that and can put on a good show for people who do not live with them), but she is now at the stage where she cant any longer and it has suddenly become noticeable.

I would investigate what she eats - you may find that, despite her protests to the contrary, she has forgotten how to cook and is surviving on cake and biscuits!

You are in a horrible catch 22 situation at the moment, but, in my experience, you have to fight for support even after the diagnosis. TPers will be able to advise you through that period though. At this stage the things to sort out are things like POA and wills (if you havent already), or if she refuses that get third party signatory on her bank accounts at least, so that she is not left stranded once she loses capacity. Dementia is so variable that it is really hard to be proactive. Someone said to me that you just get all your ducks in a row and - whoosh, they all take off in different directions.........

 

[1mindy]

Mum has lost a lot of weight and is now only 6 stone and I am not sure what she eats everyday.
My mu.lost lots of weight she was tiny She was forgetting to eat.
She put it all back on when she went I to a home.

 

[Emac]

Hi I am sorry you are so worried. Are you sure you need a diagnosis to have a SW assessment? She is elderly at 90 living alone losing weight and clearly not coping dementia or not. Surely she is entitled to some support at home? Could you approach GP and social work using the trigger words of vulnerable adult at risk not coping and that you will hold them responsible if anything should happen to her.

 

[blueboy]

I don' think you need a diagnosis to have a SW assessment - Mum was assessed 6 months ago but hadn't been diagnosed. She was like your Mum - seemed to be coping although not showering or changing clothes as she used to and lost weight. However, after a fall, a care plan was put in place and she now has carers 4 times a day and Meal on Wheels. She also does nothing but sit and doze - no TV or radio and no desire for them. She is nearly 94 and has gone downhill masses this year. Don't do as I did and assume that your Mum will be OK - PWD can be very good at hiding it.

 

[Dayperson]

It's not just the fact they hide their symptoms but the denial can be hard too. I am constantly battling the fact that she has had her medication or talks herself into not needing it (Gaviscon for indigestion).

I feel your pain as it's something I'm finding difficult to cope with, especially as she is so stubborn and I like things done properly.

Does the denial and stubbornness get worse over time?

 

[canary]

It's not just the fact they hide their symptoms but the denial can be hard too. I am constantly battling the fact that she has had her medication or talks herself into not needing it (Gaviscon for indigestion).

I feel your pain as it's something I'm finding difficult to cope with, especially as she is so stubborn and I like things done properly.

Does the denial and stubbornness get worse over time?

Its not actually denial - its that they are incapable of understanding that there is a problem (however bizarre that sounds), so from that point of view they dont need any help and they are doing everything properly, because there is no problem.

 

[MrsChristmas]

I never thought it would be like this

Hello everyone who has offered me advice about my mother which I have really appreciated.

My mother and my brother have both told me separately that mum just wants to be left alone, that she does want any involvement from the doctors, any hospital appointments or investigations. Mum is 90 and is aware (for the first time) that she has memory problems but put's them down to age. She tells me that she will decide when or if she will ask for help and will know when the time is right. Until then, she says that she will be careful, she is eating properly and that her house is tidy.

Mum is considering changing her GP but she has now taken a dislike to him and she does not trust the rest of the practice and will now look elsewhere.

I have spoken to local services (dementia services, age uK) and they all advise me that there is nothing that they can do if mum does not to go for tests or allow people into her house.

I can't fight both my brother and my mum, so I will let this go and I going get on with my life.

So it's goodbye from me for now (but I am sure I will be back for further advice in the future!).

Thank you again for all your kind thoughts, help and advice, I am truly grateful.

Kind regards

Mrs C