Is Life Over for Both of Us?

[John Bayfield]

Hi there.

My mum has FTD dementia and since her diagnosis around a year and a half ago it has aggressively accelerated.
She’s now at the stage where she mostly makes noises, rather than able to form any words and sentences.

As she lived alone there has had to have been some big life changes. I typically travel the world as a cameraman (something that after 6 years of ultra hard graft is only now starting to work out for me) but I am now a full live in carer.
I was primarily surprised at how people distance themselves after a diagnosis. Friends, gone, hers and mine. I keep her social as possible with groups and activities but it’s not a replacement from her life long friends. Even family vanish. People that would visit weekly/monthly have not been seen all year.

I’m finding after a solid year of 24/7 care that I realise I’m now totally isolated. Career effectively abandoned. Plans for starting a life with a partner, gone. No one to actually talk to about this. So hear I am. Is this common? How did you over come?

After admitting to the doctor that I felt like I was without hope, I have been put on some sort of happy pills. So far they seem to be making everything worse.
Is this my life now?
I’ve never felt so mentally unwell/exhausted in my life.
I HATE you dementia.

[bowlingbun]

Good that you hate the dementia, not mum. You must focus on what she NEEDS not what you want, and accept when the times come that she will need a TEAM of people, not just you.

Have you asked Social Services for a Carers Assessment, to see if they can help you?
When did mum last have a Needs Assessment?
My mum was slowly abandoned by everyone in the family but me....until my nephew and niece realised that she was slowly dying. Then the would visit mum in the nursing home, with baby in tow, leaving me to sort out mum's house entirely alone!

You learn a lot of things you'd rather not know about, but your love for mum shines through your post, regardless.
How old is mum?
How old are you?
Do you have any brothers and sisters?

The time is fast approaching when caring for my alone will be totally beyond you. There is no shame in saying "I need help" because without your tender loving care she would have been in care a long time ago. No guilt either, because your mum has had a long life, and is naturally nearing the end of it.

When my own mum was fading fast, I Googled "signs of dying", with tears rolling down my cheeks. There are some excellent articles explaining how the body slowly shuts down, over a long period. Please read them, so that you understand what is happening, and know that mum will not be aware as you. I just wished I'd read them when our first parent was dying.

Feel free to ask us whatever you like, we don't always agree, but can usually offer a few suggestions between us. There are many ex carers here too, who can share their own experiences.

[John Bayfield]

Feel free to ask us whatever you like, we don't always agree, but can usually offer a few suggestions between us. There are many ex carers here too, who can share their own experiences.


Cheers buddy. I’m 39 and mum is 70, so by no means old

She’s had a few assessments now, as have I, and I’ve managed to get her attendance allowance and pension credit sorted. There’s probably other ones I should look in to. Resources here are finite and the waiting list just for a bit of day car activities is very long indeed.
I had to do this for my grandparents too but it was never this hard.

I’m 100% focussed on what she needs. But I feel my life is effectively over. I’m sure some of us must get that?

[Pet66]

My lovely husband was in a nursing home because of strokes and vascular dementia. His consultant strongly advised me the nursing home was in his best interests as well as mine.
I too hate dementia, we all do, but hubby didn't know he had it. Confabulated loads of times and usually was happy confabulation. Friends disappeared, sadly that's not uncommon, but I made new ones through the nursing home. We have a special bond.
Have you considered contacting the Alzheimer's association or if any in your area, admiral nurses.? It may, at least help you with the isolation, and guide you towards help.
Its very painful, I truly understand, and my heart goes out to you.

[MrsAverage]

John
I'd change the thought "my life is effectively over" to "my life may be on hold for a while but it will resume".
As her dementia is worsening rapidly it will not be long before either residential care or her passing. BUT just in case nature is cruel for both of you and it goes on you must start to get some breaks/respite for yourself. This may be the odd few hours to go socialise, play sport or whatever you enjoy, or longer holidays away.
No one, absolutely no one, however loving, can care for another 24/7/365, it takes a team and if there no other family then it has to be paid for Care.

Also as you are relatively young (lots of us on here are 60-80+ caring for 80-100), I think you do need to follow your own career and consider Residential Care for her. You need to build your life and look after your own future. it's a bit like on the airplane when you are told to put your own mask on before helping others. You need your own home, family and pension

Dementia is cruel indeed, often harder on those caring than those with the disease. Im going to see my 96 year old Mum this weekend in a Home 200 miles away. At our last visit 6 weeks ago she didn't recognise my husband. This time I'm afraid she won't recognise me. It won't bother her, but it will bother me

Welcome to the club no one wants to be a member of

[Anne001]

Welcome John,

Yes, I felt exactly like that when caring for my mum. And the life I had pre mum's diagnosis was over, at least temporarily.

I too took the happy pills from the doctor. And at first I felt 10 times worse; however, gradually they did enable me to cope, as did venting on this Forum (I did a lot of that!). Friends and family faded away in case dementia was catching (?) and it was very very hard.

Only advise I would offer at this stage is to visit as many nursing homes as you can, to assess an eventual home for your mum. There may come a stage, sooner or later, when you decide you can't do it any more. No-one can make you care. And by having that plan B up your sleeve, it gives you a little bit of control back. In my mum's case the point came when she was in hospital for the fourth time in many months; I had 48 hrs in which to find a home. By having my plan B (choice of nursing home), it meant I could move fairly swiftly, although the hardest thing I ever did.

You are still relatively young, you will get your life back but it is a constant struggle to avoid dementia taking it over. If you decide to continue to care for mum at home, it is essential to get breaks (even an hour), hopefully respite too to carve some life back.

If you have any questions, ask away. Many of us are or have been in your shoes,
Anne x

[Sally_17031]

Also as you are relatively young (lots of us on here are 60-80+ caring for 80-100), I think you do need to follow your own career and consider Residential Care for her. You need to build your life and look after your own future. it's a bit like on the airplane when you are told to put your own mask on before helping others. You need your own home, family and pension

I fully agree with this. I was in my 30s when I became a carer for parents and can fully relate. I was married with 2 small children, who were my saviours really as I knew they had to start to come first. I think was harder for my sister who doesn't have children as society seems to think you should be a ready full time carer. Dementia can go on for a long time. So it comes down to how long you are willing to pause your life? I am sure your Mum wouldn't want you to feel like this? It is important you try and get a better balance for you. Are you getting any outside help at all?

Also very common for friends and family to drop away. No one really visits Mum any more, which piles on the pressure to us further doesn't it?

[Blue1234]

I agree with what others have said.

My wife was diagnosed with early onset mixed dementia a couple of years ago but we are both now in our mid 60's and retired.

Retirement plans have changed but I have refused to completely surrender my own life. I see to my wife's needs then take time for my personal hobby every day - my wife even manages to leave me in peace some days!

Your comment about Day Centres(DC) hit a nerve with me. Over the last 2 years I tried to get a DC organised but faced the same sort of waiting list that you have encountered. I recently asked my GP to refer us to a Social Worker and managed to get a day at a different place that has turned out to be great. Like you I was at the exhausted and feeling unwell stage so was thinking that I would need pills from the GP as I wasn't sleeping and was sitting crying most days. Since the DC was arranged I have been getting a bit more sleep and haven't cried once. I am also finding it easier to care for my wife. I would strongly recommend that you keep pushing for a DC as it could help you both.

I wish you the best of luck with that.

[Cerinthe]

How do you feel about picking up your career and getting mum into a nursing home?

I work full time and constantly ponder giving up to be a carer but know I just couldn’t do it happily and my unhappiness would sleep through me. My dad is full time carer and I mostly spend weekends and evenings supporting him in his role. Not sure Mum would actually register if she never saw me again.

[Tim_1907]

"My mum has FTD dementia and since her diagnosis around a year and a half ago it has aggressively accelerated.
She’s now at the stage where she mostly makes noises, rather than able to form any words and sentences.

As she lived alone there has had to have been some big life changes. I typically travel the world as a cameraman (something that after 6 years of ultra hard graft is only now starting to work out for me) but I am now a full live in carer.
I was primarily surprised at how people distance themselves after a diagnosis. Friends, gone, hers and mine. I keep her social as possible with groups and activities but it’s not a replacement from her life long friends. Even family vanish. People that would visit weekly/monthly have not been seen all year.

I’m finding after a solid year of 24/7 care that I realise I’m now totally isolated. Career effectively abandoned. Plans for starting a life with a partner, gone. No one to actually talk to about this. So hear I am. Is this common? How did you over come?

After admitting to the doctor that I felt like I was without hope, I have been put on some sort of happy pills. So far they seem to be making everything worse.
Is this my life now?
I’ve never felt so mentally unwell/exhausted in my life.
I HATE you dementia."

My mum is forgetting things, getting weirdly panicky, saying quite odd things when getting out of bed in the middle of the night, constantly asking the same questions again and again. It's deteriorated quite rapidly, but all is thankfully quiet on the Western front at the moment. Asking my sibling for some help recently I got accused of trying to live with my foreign wife over in her country and dumping the situation on my sibling, which made me very angry indeed and I have had to simply forgive or I would boil over into saying some really nasty things quite aggressively. On the contrary, my wife is planning to come over here and help me care for my mum.

Friends are going to disappear. I mean, be honest, if you had a mate who was going through something similar, would you want to involve yourself too closely, in case you couldn't really help and then had to walk away? I can't answer that question myself and I'm a practising Christian who believes in helping others and being truly charitable, where possible. Forgive and forget. People have lives too, and families and other interests. Harsh, I know, but that's life. It does indeed suck sometimes.

I'm right in the middle of trying to start a new life with my new wife, irrespective of the circumstances. This won't be easy. We plan to work in the UK, buy some property and land in my wife's country, and I hope to be a published author because I have been writing for 25 years, thwarted by life and long term ill health of my own. Not easy. But there is always a way. I'm in my 50s my mum in her 80s.

Career? It's on hold. No one knows what tomorrow may bring. You're 37 not 67, after all. But, still, it's hard to see all that hard work, contacts, connections and possible lucrative opportunities dissipate. As for a partner, I found my exquisitely beautiful and sexy and virtuous wife on a Christian online dating site, when I saw her picture and fell instantly in love. Nothing is written, old sport, we do indeed write our own story even if the pen sometimes runs out of ink, the pages get smudged and other things get in the way. But you carry on writing your story when you can. As a Christian, I pray and have been praying fervently. Over in my wife's essentially third world country, although there are places of incredible opulence and wealth, the capital city and the skyscrapers there look like something out of a Sci Fi movie, and at street level the poorest come out around 3 or 4 am to sell cheap refreshments to the low paid workers, just to make a living. Work for a day, live for a day. The poor subsist. There's no welfare, you pay even for public hospitals, wages are generally low even good jobs compared to the West, yet internet, water, electricity and many consumer goods and decent food and restaurants are little different from our prices. Even the affluent middle class have less than some of the 'poor' here. Count your blessings.

You do need to focus, seek and then keep asking for help. A breakthrough will come, They are starting to come for me now. I wrote a reply to Cerinthe, too. I'm not the font of all wisdom, no the great sage of all the ages, just an ordinary working class bloke from NW England. But your life is not over, mate. It may feel like it. But it isn't.

As an aside, if you wish to private message me, and contact by WhatsApp, feel free to do so, but I will not be offended in any way if you don't or can't be bothered nor even if you don't reply to this post, I just hope that I've given you some food for thought.

God bless you.