My poor mum's life has been destroyed by Alzheimer's but it's ruined mine too.

[KiwiGolden]

As well as my poor dad's life and my sisters too. Mum would have hated this.

Over the last 8 years my thoughts have always been for my dear mum, I have gone out of my way to help her on this dreadful journey because she was the best mother but it's taken a massive chunk out of my life and I will never get that back.

I know that I somehow need to shelve this thought process but I now live in complete fear of getting this evil disease. I feel that witnessing what this does to people has left me with a kind of ptsd, sorry if that seems overdramatic but it's genuinely how I feel right now. I don't want my brain's functions to be slowly eradicated, to lose the ability to communicate my most basic needs, to end up double incontinent and have to rely on other people to do the most personal of personal care for me.

Mum has just come back from a two week respite stay in a care home and that experience has terrified me even further. The home was lovely with great reviews, a great QCC rating and decorated homely and cheerily but was the most depressing place I have ever been in simply because it was full of (sorry to say), zombies.....men and women who used to have jobs, friends and social lives. These people once raised children and kept households, travelled and did 'stuff' without giving it much thought but now there is no life left in them, just their shells. They need help walking back to their rooms because for the umpteenth time that day they have forgotten where they live and who they are adn are just wandering. Having to be hand fed, toileted and put to bed like young children. It was heartbreaking and terrifying at the same time. I sat next to a lady yesterday who was at the table just shovelling custard in her mouth as though she was a robot, there was no life in her eyes, I smiled and spoke to her but there was nothing there, she was just staring into space whilst spoon went to bowl and to mouth again and again as though she was pre-programmed to do so. I wanted to weep for that poor lady.

Mum was diagnosed in 2018 and since that time I have nothing positive or encouraging to say about dementia and will now live the rest of my life in fear. Every time I forget a name and struggle to find a word, mislay something or repeat a story a flash of panic will overwhelm me and sink me that little bit further into the fear. I am currently in counselling but it won't help me erase the fear because unlike those who have never had the misfortune to see what dementia does, I have and it terrifies me.

I know that no disease is fun but dementia is just insidious and heartbreaking.

@Cheese55 yes absolutely. The illness means they do not have insight into their condition.

Thanks @goldenkiwi that’s really kind, and I’d like to extend that offer to you Talking to someone who understands can be a real release. A couple of years ago I was in a supermarket crouching down to look at the bottom shelf. I could hear a woman talking to another woman and a new immediately that it was a mother and daughter, and that the mother had dementia The daughter was so frustrated and when she saw me, looked embarrassed and said’ ‘ you must think I’m a terrible daughter being to my mother in that way, it’s just that she has dementia and I’m exhausted. It can be so hard sometimes’. I said that I was going through the same thing so I understood and she immediately burst into tears. We went for a coffee and I helped her mum while she just sat and cried eventually, she found her composure and we chatted and I think it was really good for both of us.

It’s funny (not ha ha) that you mention your digestive system as mine is horrendous. It was an issue while everything was happening but actually got substantially worse after dad died. I spent the last year avoiding going out in case as my stomach was so unreliable. I had heard people talk about the physical impact of stress but I don’t think I appreciated just how hard that can be. As an aside, I would speak to your GP about is though it likely stress induced, it could be something else. Also, if you have IBS type symptoms there are things that can help somewhat.

DH has Alzheimer's and has just gone into a care home as I was unable to cope and withdrew care (he has always refused carers)

The only plus side to the whole situation is I am now very clued up on the ways we can attempt to prevent dementia as I'm so terrified of getting it myself.

Like others on here I will "take steps" should the time come as I have zero intention of living the way DH does.

I'm so sorry you're going through this @KiwiGolden . I am also in the process of arranging counselling for myself due to the impact this has had on me.

Dementia is the cruellest of diseases - I work in a care home and seeing the change in people, and getting to know their relatives throughout the horrific journey is heartbreaking.
my uncle has Alzheimer’s and it is so sad to see his deterioration, and me Aunts as she cares for him and sees their lives and amazing memories and experiences go from his mind.
its a disease that is so so much harder on the family than on the actual person with it in the end.
i am so sorry for you all xx

I can understand your post. You cannot get over the experience.
As for worrying about yourself, all you can do is try to be as healthy as possible.
They do not really know why it happens. What causes it. And there are different types of dementia to make it more complicated.
Many I think would not have lived to experience it years ago. They did not have the advances in medicines to keep people alive for so long.
I often think that where people have experienced a major illness or trauma or two at old age the brain starts to switch off. And thinks it is time to go.
Medicine then makes the body better but cannot reset the switch in the brain. They have not learnt how to do that yet.

The depressing sight of patients with severe dementia in care homes I find truly awful. My mother was whisked away from her home, all her belongings and familiar routines because someone she did not know decided she could not stay at home with carers calling in. That very day. Never to see her things again. It was inhumane. Even when we said we can up the times they come. We were told we could not legally lock her in her house. Despite having a pendant for help. And very good neighbours. Although it was alright for the care home to do so. Lock their door, or in some areas corridors.

I don’t think, until people experience it for themselves, fully understand.

All my Aunts on one side of my family have suffered with it, amazing bakers, skilled crafters and such strong women reduced to pitiful creatures who took years to pass away and endured such suffering when they could no longer swallow food etc
My own parent is terrified they will get it due to in going through the siblings, they are the youngest.
Sending a big hug hopefully research and change in law will ease future suffering.

The bill was designed for people with a terminal illness, capacity and with less 6 months. Dementia could not be included because of the capacity aspect.

I had 12 weeks of counselling last year (via a local training college, my counsellor was lovely) and have started CBT a couple of weeks ago. I’ve had CBT before but sadly I don’t find either particularly helpful especially the CBT but it’s all the NHS can offer and as I’m on carers allowance I can’t afford private counselling.

I would go back to the counsellor I had last year but now she’d fully qualified she charges £40 per hour.

Thank you and that was a lovely thing to do, that lady must have been so relieved to have found someone understanding.

Sadly, I’ve never been one to handle stress well and my digestive system seems to take the brunt. I’ve had so many tests over the last 5 years (colonoscopies, gastroscopes, scans, pill camera etc), nothing found thankfully but like you say the impact of such constant stress really does take its toll (not to mention having to out myself through awful and uncomfortable tests!). I don’t go anywhere anymore as I feel perpetually nauseous and upset in the digestive system, absolutely nothing helps. My dh is convinced all will settle once my parents are no longer here but that seems too awful to contemplate.

I really hope the counselling helps you.

My mum was killed in a car accident at 69.
Treating broken bones is humane and sensible, some of the lifesaving treatments and medications continually given to very frail, elderly people with dementia is ultimately often quite the opposite.

There is a mindset of people in their 80s/90s that they made their marriage vows "in sickness and in health" and that to put a spouse in a care home is wicked and uncaring.

My uncle was 90, doubly incontinent and suffering with dementia. He sat in a chair, unspeaking, staring into space.

My auntie wouldn't allow carers into the house as looking after him was her duty so she was continually changing soiled bedlinen etc.

One day she was found dead. I'm sure she would have lived longer buf his dementia killed her

I'm also absolutely terrified of getting Alzheimer's/dementia since Mum was diagnosed in January.

I have started doing weights with a PT (I'm 62) which I find surprisingly enjoyable. I will be leaving detailed instructions for my children about not prolonging my life after I lose capacity. I found a pair of newish M&S trousers in the wardrobe the other day which I must have bought last winter. I have zero recollection of buying them, but they are the sort of thing I'd wear. It is terrifying.

I’ve done things like that and come over in a cold sweat feeling terrified that it’s the beginning but I think it’s common to do these things when we are stressed and have so many plates spinning in the air.

I’ve started learning t’ai chi as much for my mind as my body. I’ve found learning and remembering the forms really difficult. I nearly quit after a couple of months but I didn’t and I’m really I kept with it. It’s good for balance too so that’s always a good thing.
I also make a massive effort to be sociable in the hope that may help even very slightly in not developing it.
I am also very on top of regular dental hygienist appointments.
I do try and not think about it too much especially as my DM was only around 8 years older than me when her symptoms started to become noticeable.