Dementia - life before and after it became such a huge part of my life

[honeybears]

I read a post yesterday from a lady who commented on the two lives that she has had -the one before Dementia came into it and the one that she has now and I understand exactly what she means.

Life before Dementia was the Olympics 2012 and the Queens Jubilee - that was when life was as normal as it could be - when my brain wasn't frazzled by constant thoughts of the illness and all the pressure that being responsible for my parents and their well being brings - just 12 months after such an iconic year and my Mum was taken ill and subsequently diagnosed with Dementia and just 18 months later my Father was diagnosed as well and now my life cannot escape what Dementia has brought to it.

Reading the many forums posted every day, I don't have anything to complain about although working full time and putting all my thoughts into a job when there are more important things in life is difficult but the bills have to be paid.

Mum does not deserve what has happened to her and visiting her twice a week at the care home is not how I saw things and whilst I would not see any harm come to my Father he has always been a difficult man so my sympathies (and others within the family) for him are few and far between and the day he can go into care will not come soon enough.

A life without Dementia for me would be pure bliss but I also know that a life without Dementia means they will no longer be here!

 

[Pinkys]

Yep, life before...2013 a mother and mother in law, both in their 90s, but living fulfilling lives in their own homes. Seems like another age.

One thing that strikes me..when someone has a baby, work colleagues, friends etc all know roughly what it is likely to be like for the new parent. We have a shared understanding of this life event. Similarly if someone dies, we have a shared understanding of bereavement. Roughly speaking.

When dementia kicks in, though, I think most people do not 'get it'. I am aware that I was incredibly un-clued in about the impact on my friends, when they mentioned a parent had dementia. Now, of course, I am on the same page.

 

[Dustycat]

Yep 2012 was the year for me before it all 'kicked off' and subsequently had both parents with dementia, Mum down deceased. 2012 seems years ago. Pleased I didn't know what was to come. Xx

 

[irismary]

I was talking to a friend/work colleague today as OH was at day club so I went into the office - I normally work from home. She had no idea I had to help him shave, clean his teeth, wash his hair, shower him, help him dress and that bladder accidents occur. She said she just thought he forgot things. She was surprised he doesn't know my name, where he lives etc. The disease is little understood and I suppose I didn't really know pre 2014 when on holiday the penny dropped what was going on when he could not remember if he had any clothes with him even though we had just unpacked an hour or so before. Lots of things fell in place and our world fell apart. For me its remembering that he was fine in November 2012 when we had a brilliant holiday in India - or was he? Did I miss things then? Don't know and will never know now just got to do my best for him and my Mom who is 92 and deteriorating quickly showing some signs of confusion.

 

[Georgina63]

2011 bd

Can so relate to all of this. 2011 was the year we noticed signs of memory loss with mum...also the year mum and dad were in a nasty car accident and the date clearly marks the start of it all. Both parents officially diagnosed 2014 and the rollercoaster continues! Interesting that there are more people out there with both parents with dementia than realised. Sorry we have all had to experience (and continue to experience!) with loved ones. So true that others don't get it, although I have empathetic friends, husband and kids - it's just not the same unless you are in the midst of it! Keep posting everyone!! Georgina X

 

[Pear trees]

2012 for me as well, when mum was diagnosed when she broke her hip. She has slowly declined, and has gone from accusing family of stealing food and money, of leaving her alone and to starve, and not wanting us to help her, to now very frail and confused and needs help with all personal care, and only eats when reminded and prompted.
She has no quality of life whatsoever, and it impacts on me as I have to arrange carers, cleaners, bills and food deliveries for her on a daily and weekly basis.
She is 89, and a clairvoyant told me she would live till 93 - oh God I hope not!!!

 

[Georgina63]

Know the feeling

2012 for me as well, when mum was diagnosed when she broke her hip. She has slowly declined, and has gone from accusing family of stealing food and money, of leaving her alone and to starve, and not wanting us to help her, to now very frail and confused and needs help with all personal care, and only eats when reminded and prompted.
She has no quality of life whatsoever, and it impacts on me as I have to arrange carers, cleaners, bills and food deliveries for her on a daily and weekly basis.
She is 89, and a clairvoyant told me she would live till 93 - oh God I hope not!!!

Different circumstances but doing similar for mum and dad. Hard enough managing my own life, let alone that of my parents. Mine are in their early 80s. The future is daunting! Pass the wine!! Gx

 

[nae sporran]

I totally sympathise with everyone on here. If you are suddenly having to manage both your parents lives as well as your own it must be so much harder, I only have OH and have more or less retired on her pension in late 40s.

Funnily enough it was not before and after Dementia though, as she was declining a little after her stroke and after the diagnosis, but was doing ok for the first couple of years. It was the seizure which sent her into a more pronounced spell. The day after my birthday too, so all the silly trinkets you get seem meaningless when you know the day after is the anniversary of your lovely lady starting to decline.

 

[Loumag]

Different circumstances but doing similar for mum and dad. Hard enough managing my own life, let alone that of my parents. Mine are in their early 80s. The future is daunting! Pass the wine!! Gx

I can so relate to this - at the satrt of 2016 I looked forward to youngest graduating from Uni, no more real parental responsibilities and a big summer holiday to celebrate 25 years being married and raising 2 lovely kids...Then in April my Dad died suddenly and the awful realisation that he hid Mum's dementia so well from me - talk about life changing in a couple of days - I love my Mum dearly but this is the hardest thing Ive ever had to do - its heartbreaking seeing that lonely wee lady so confused and missing her husband.I totally agree that the illness is so hard to understand until it affects you - I had no idea. The future is indeed daunting, and yes, thank goodness for wine and this forum!

 

[Linbrusco]

My sentiments exactly, and for me 2011/2012 was the beginning also.
I have been actively caring for Mum for past 5 yrs, first with Chronic Lymphocytic Leukemia, then bowel cancer and then Alzheimers.
Mum has only just gone into care in the past two weeks.
Mums Alzheimers consumed my life to the point, I really didn't give dad a 2nd thought as to how he would be on his own ( lives behind us)
He's always been a difficult and complex man ( occasionally he shows a soft side) he never treated my mum particularly well throughout 55 yrs of marriage, and even towards the end of her being at home. He never understood Alzheimers, and never wanted to try for Mums sake or mine.
Dad has cognitive impairment. Now he's asking when Mum might come home, will they do something to make her better so she can come home, and it's their wedding anniversary on Friday. For the first time ever, and i mean ever he wants to give Mum flowers. Now that she's in care he probably realises a little too late?

Now it's another phase of visiting Mum, filling out POA duties, helping out with Dad, teaching him how to use the washing machine, microwave, taking him grocery shopping.....

 

[2jays]

I can so relate to this [cut]

The future is indeed daunting, and yes, thank goodness for wine and this forum!

Whine, rant, feel hard done by..... All accepted and understood on this forum.... And Wine aka grape juice also accepted and understood - to not show bias, other fermented fruit juices/brans/distilled nectar also accepted

2009 after step father died was when the "children" of the family joined the club no one wants to join. Or understands, until joining isn't an option....

Step father, the alleged/perceived/seen as an alcoholic, was holding their, his and mums, life together, therefore protecting us and our mum.

I guess he wasn't necessarily an alcoholic, just a guy doing his best

Like we all are

 

[marionq]

2011/2012

What was it about 2011/2012 that triggered so many diagnoses? My husbands odd judgements and decisions had been going on for years but suddenly a trip to the GP became overpowering. John trusts me and with good reason after half a century so selling the car, sorting out our wills and POAs while waiting for a diagnosis, rearranging our affairs, were all done with his approval or at least his consent.

At this point I was confident he was stage four but he rapidly declined despite my best efforts. He still looks tanned and dapper but is without capacity on all fronts. He ticks every box on stage six. I am a healthy 72 who has been fiercely independent since childhood and here I am the prison warder/strict teacher/ head cook and bottle washer/decision maker/ nurse and consoler. How did it happen?

What a strange situation that we as carers find ourselves in. By default we are responsible for another human being - sometimes more than one! - yet we didn't choose or volunteer our services. The inability to walk away or to abandon someone we loved is what keeps us going but by God it is not easy.

 

[Georgina63]

Cheers

Just raising my glass to all you amazing people! Hope you all have a good night Gx

 

[LisaTudor]

A life without Dementia for me would be pure bliss but I also know that a life without Dementia means they will no longer be here!

Yes ... a life without Dementia would be bliss. It is so stressful being with an Alzheimer patient. But then I think, like you, that without Dementia would mean my mother was no longer with me. And after losing my beloved Dad in December, is too hard to bear. Such contradictory feelings .... I don't want this, but I don't want to lose her :-(

 

[Pinkys]

I was 'lucky', my mother died about a year after becoming very ill suddenly. There was a decline, but it accelerated dramatically. So I have few memories of her time of illness. I miss her terribly but it is the not ill Mum I think about.

Whereas, we are about to go to visit MiL, in CH. She has been very ill now for over 2 years, and declining noticeably for another year before that. So when she dies, I think we will have these difficult years at the forefront of our thoughts. I don't want that to be how the poor lady is remembered.

 

[LisaTudor]

I don't want that to be how the poor lady is remembered.

That's what I don't want either. But unfortunately, I think that's what my three children are going to remember about their grandma during her last few years. Such a sad illness.

 

[YorkshireCat]

We had 4 years since retirement going on holiday for short breaks every month - there was always the next trip to plan. But since November we have not felt we could leave MIL for more than a day - check she has got up, taken pills, had meals, do washing, take her shopping, take her out, organise cleaner ...... We do get some breaks when OH 2 siblings come and stay but both when they both have been on 2-3 week holidays in the UK and abroad it grates a bit!

 

[Slugsta]

I really identified with the OP as it was over the Jubilee bank holiday that Mum had her stroke. Just a small one, very little after effects other than dysphasia initially but it really was the watershed for us.

 

[Bucky10]

Dementia he doesn't know he has

Every day now I sleep as I did when our daughters were babies that first stirring that signals the day's first wee. So it's out of bed quick with his bottle to hand and stir him into conciousness and standing position. It was a success so our day began well, three hours later our eldest daughter rang to ask after us both. Everything is good, I feel lucky and blessed, so does she. Dad has dementia but most of the time he is happy and contented.
Don't let him keep pinching one more biscuit though Mum he is getting chubbier.
So it's tea and tablet time with just four biscuits.
Then cereal and I think I will comment on AS when he has his morning nap, but my nose tells me we might need the loo, he says not, though maybe a wee. This time he wants to do it himself so I just hold the bottle, but his idea if preperation is to trap it in the elasticated waistband and off he goes like a fountain, shirt, pants, carpet and me. Never mind it was a mistake, so after changing him he gets down for his nap, but there's that smell again, so I ask have you got wind? Nope must be you he jokes and rolls over but the duvet cover has a different story and though he is sorry and doesn't know how it happened it's a good bed bath, clean clothes and bedding etc in washing machine, and I am not even dressed.
This happens about once every few days then we have two when we only get the odd damp patch, but would I swap even the ****ty days for peace and tranquility without him No never, because one day that day may dawn anyway and there is no going back.

 

[marionq]

Every day now I sleep as I did when our daughters were babies that first stirring that signals the day's first wee. So it's out of bed quick with his bottle to hand and stir him into conciousness and standing position. It was a success so our day began well, three hours later our eldest daughter rang to ask after us both. Everything is good, I feel lucky and blessed, so does she. Dad has dementia but most of the time he is happy and contented.
Don't let him keep pinching one more biscuit though Mum he is getting chubbier.
So it's tea and tablet time with just four biscuits.
Then cereal and I think I will comment on AS when he has his morning nap, but my nose tells me we might need the loo, he says not, though maybe a wee. This time he wants to do it himself so I just hold the bottle, but his idea if preperation is to trap it in the elasticated waistband and off he goes like a fountain, shirt, pants, carpet and me. Never mind it was a mistake, so after changing him he gets down for his nap, but there's that smell again, so I ask have you got wind? Nope must be you he jokes and rolls over but the duvet cover has a different story and though he is sorry and doesn't know how it happened it's a good bed bath, clean clothes and bedding etc in washing machine, and I am not even dressed.
This happens about once every few days then we have two when we only get the odd damp patch, but would I swap even the ****ty days for peace and tranquility without him No never, because one day that day may dawn anyway and there is no going back.

These sporadic events have started recently here too. I bought a carpet protector for between his bed and the en suite from A****n for less than ten pounds. It has been q godsend. I bought two Kylie sheets to protect the bed from accidents and they too have been brilliant. The continence nurse has signed us up for delivery of pants and pads and I also bought a good supply of pull-ups for when we are out. A recent bout of diarrhoea and vomiting meant seriously addressing these issues.

Good wishes.