Hello...

[Rach W]

I have just registered on this site and wanted to say hello . I've been struggling a bit this week and keep wiping away tears. Nothing has changed significantly in the last few days, and there's been no major upsets or incidents this week.. it's just that I've realised I would really like to connect with people who understand what it's like to care for a loved one with dementia. I sometimes feel like no-one understands and I feel so isolated. I have my own flat (which I am now selling, and that breaks my heart) but I moved in with mum about 5 years ago. She was diagnosed about 4 years ago with Alzheimer's and vascular dementia. It feels like the trigger for the dementia was our dad dying, because everything changed after that. I have a full time job, which I do from home, and sometimes I find the emotional challenges and broken sleep so hard to cope with. I have overwhelming feelings of guilt about everything, that I'm failing in everything I do. I miss my old life, but I love our mum so much; my sister, me and mum were always the best of friends. I "miss" mum, I mean who she was and the relationship we had, and I miss seeing my sister and spending time just with her . On the bright side, mum and I have a lovely sausage dog which has been our saviour.. she makes us laugh every day .

 

[Grannie G]

Welcome @Rach W

You have made a lot of sacrifices for your mum. She is lucky to have such a caring daughter.

I hope however devoted you are you will realise when the time comes for you to get some additional help It`s too hard to do this alone.

I hope you will feel supported by the rest of us on the forum. It will help your feelings of isolation but I’m afraid it will do nothing to make up for your loss of sleep

 

[Bunpoots]

Hi @Rach W welcome from me too 🙂

 

[Kevinl]

Hello and welcome from me too.
Something over 10 years on the site for me, caring for my wife then mum too.
You'll get a lot of support on here, I have over the years as a carer. K

 

[Gosling]

Hello and a welcome from me too @Rach W to this friendly and supportive forum. There is a wealth of shared experience of dementia to be found here so I am glad you have found us.

I am sorry to read about your Mum. The love you have for her shines through. It sounds like you are doing an excellent job, managing a full time job, and caring for your Mum. As others have suggested, please remember that now is the best your Mum will be, as the disease progresses, and there will doubtless come a time where you will need more care support.

My own dear Mum went down a similar path sadly, so I do understand totally where you are. One great thing about this forum, is that you are never alone. People here really do want to help, and most importantly, they understand. It's also a great place to let off a bit of steam when you need to.

 

[Calon Lan]

Hi @Rach W

I can understand your feelings and I am so sorry that you have been finding things more difficult recently. The relentless emotional challenges of caring for someone with dementia can wear down the strongest person in time. I suspect it’s often not a major incident that triggers increased distress in a carer, but some relatively small event that can tip the balance in a moment.

You have cared for your mum for a long time at her home. You’ve done that throughout the covid lockdowns, which almost certainly added to feelings of social isolation for many carers. You are dealing with tremendous loss; the loss of the mum you knew and losses in your own life. You have held down your job while providing care for your mum. I would be very surprised if you didn’t have times when you needed support and understanding.

My mum has Alzheimer’s and vascular dementia, first diagnosed nearly five years ago. I moved in with her in April 2020, soon after the first covid lockdown began in the UK. I lived with her for nearly three years before she moved into residential care. I was already retired, so I didn’t have to worry about maintaining a job. Thankfully my mum slept well and so I didn’t have to deal with sleep deprivation. Nevertheless I found at least two of the three years incredibly stressful and mentally exhausting. By the end of the three years I think I was very close to serious carer breakdown.

There are so many conflicting emotions to deal with when caring for someone with dementia. I often felt I was failing when looking after my mum at her home - for all sorts of reasons. We are often our own worst critics. Guilt lurks and it can take hold whenever we feel we have done something wrong or we have made a bad decision. It’s incredibly difficult to manage all the emotional turmoil. You are not alone, and people here do understand.

Sending thoughts and best wishes.