What a difference a day makes.....

[beverrino]

every time this happens that song goes through my head when driving home!
My mum lives alone and I work fulltime. I visit her every night after work and on weekends. I am her only consistent visitor. She copes well generally through a full life of routine, but is deteriorating.

The thing is - I never know what I am going to find. Normally general things are organizing her tea, shopping lists, money, bins, mail - anything else.

I went on Wednesday night, to find her completely disorientated. She was struggling with basic tasks and on a constant repetitive loop. Extremely anxious, worried and very agitated. It was difficult to get anything through to her, and went I left she looked totally bewildered. Needless to say I worried abut her all night.

Anyway, next visit - the following day, I found a different woman - better than she has been for a long, long time - so one total extreme to the other. She had even prepared her shopping list herself - something she hasn't done for months - and it was correct!! (she does get prompts from her shopping book, but still). We had conversations and even laughed together - wonderful.

Now this is the thing - Wednesday I was starting to think - this is it! she needs more care, but then.....

I find it very bizarre and I know its the nature of this nasty disease, but it is so very odd

 

[PollyP.]

Hi Beverino

I understand completely, life is such a roller coaster when dementia is involved. I'm so glad that she was on form the following day....

The brain is so complex isn't it and we are only just scratching the surface. I do hope that things will continue well for your Mum, it's such a worry isn't it.

My Mum is now in 24/7 care, but even so, I dread visiting just in case she is unhappy, but quite often, I come away feeling content that she is ok. Definitely a roller coaster ride!

Pauline

 

[Dayperson]

Hi Beverino,

I hope you're mum is ok? I completely understand what you're describing because my mum has loads of ups and downs like she will get dressed to go out when we are not going out, then when we have to go out under time pressure, it is an effort and can take a while.

I'm starting to realise just how horrible this illness is and it affects those around the patient more than the sufferer. Mum has definitely deteriorated in the last year.

What scares me more is the future and how she will be next week or next month.

Do you find the bad days really hit you mentally when you realise she isn't "mum"?

 

[beverrino]

Thank you for your responses Pauline and Dayperson. The bad days are horrendous - I spend so much time worrying about if I am doing enough for her and trying to imagine how truly awful she must be feeling. I usually go home with a headache on these occasions.

On her good days I am totally buzzing - realizing I have not yet lost her completely. I can tell the moment I walk in and shout hello and I get her response - whether its a good or bad day - and try so hard to lift her from her bad days - sometimes it works and sometimes it doesn't.

The future is the worst part - not knowing where this will go. She is physically very fit for her age and has never really suffered with anything except high blood pressure and a bit of arthritis - and the occasional UTI.

its good to talk, thank you

 

[WIFE]

Poor Beverrino - that not knowing what you will find each day is so draining. I remember well from my daily visits to my husband in his Nursing Home last year the stress I suffered on the drive there wondering what his condition, mentally and physically, would be. Dementia is just a rollercoaster! Loving thoughts of you and your Mum and what a devoted daughter you must be to visit every day after work. WIFE

 

[Dayperson]

Beverino, just out of interest how old is your mother? Mine is in her mid 60s which I thought was young to have dementia although from what I keep reading in the press and on this forum, it is not uncommon for it to happen at this age.

She's not been diagnosed yet but the more I hear about dementia, the more I am convinced she has it. Her dad had it, so I suppose that increases the chance I could have it.

I live with my mum and dad full time which probably makes it harder because I can't escape from it, although I do make after 6pm my time on my own. Dad and I have noticed she has got a lot worse in the past year and it gets disruptive sometimes because we get distracted from work.

I'm not sure if you're the same, but do you find when your mum has a really good day, the next is a lot worse? Last week she was fine at the doctors and he didn't see her at her worst, but the next day she gave up and didn't do anything. I find the unpredictability the worst part because I am a very organised person and she isn't, things have to be done when she wants or never at all with some excuse for not doing it.

 

[beverrino]

hi Dayperson - my mum is 81 - I reckon she has been suffering with undiagnosed dementia for about 3 years and was only 'formally' diagnosed 7 months ago. Actually I haven't found that a really bad day follows a really good day in general. We have just had two 'middle type' days and then a really bad day - so I am hoping for a really good day today! Absolutely no pattern to it - so random.

Just on another point - I sat last night and watched the second episode of 'dementiaville', I had recorded and just couldn't stop crying.