Massive new chapter, whole new life...

Tell us a bit about yourself here.
Hi... I have just joined the group and this is my story...
Life never turns out as we plan it. Just when you think you've got all your things in place and your future mapped out, there will always be the potential for something to come and turn everything on it's head and knock you for six.
Just over a year ago my mam was diagnosed with Alzheimers disease and vascular dementia. It came as quite a shock and to be honest was totally unexpected. Yes, she had been a little forgetful and was always saying that she needed "a new brain," but I had never noticed anything untoward and being 82 years old, it seemed to be nothing more than an inevitable part of ageing. Things carried on as normal. Nothing really changed. Mam actually seemed pleased that she had been given the diagnosis. I armed myself with a stack of information from the Alzheimers society- which I promptly put away in a cupboard, where it remains, untouched and I busied myself getting power of attorney organised. I continued to go to work and carry on as normal.. The thing is, I can now see that the situation was anything but normal...
Having previously worked in a residential home, I had experienced working with people with dementia so have some awareness of how challenging it can be. Because mam appeared well, it was easy to put these thoughts to the back of my mind. My first wake up call was when I picked mam up to go on our annual holiday last May and was surprised by how light her suitcase felt. She had packed 2 pairs of trousers, 3 apples, a lettuce and a handful of loose pills!! I felt like I had been kicked in the stomach.
During our time away, I managed to persuade her to agree to some outside help and someone now comes 5 mornings a week to make sure she is taking her medication.
Reality was starting to bite.
Things plodded on for another few months. It was becoming more obvious that the disease was beginning to take hold but mam appeared to be managing fine... The thing is I wasn't. Guilt was beginning to rear it's ugly head. Living on my own with the inevitable mortgage and bills to pay, I had no choice but to work, but it was slowly dawning on me that this disease was real and wasn't going to go away. The guilt began weighing heavier and turmoil set in along with the eventual realisation that actually I am not superwoman and can't do everything. My days consisted of guilt and turmoil, followed by more guilt and my work began to be affected, as well as my sanity.. Overwhelmed, I had to finally admit defeat and take some time off work. Being a midwife, I need to be on the ball and give nothing less than 100%. I felt I was barely functioning at that point.
That was 6 weeks ago and after a lot of soul searching and feelings of being torn and confused and realising I have lived the last year totally in denial, I have now decided to take early retirement ( I am 53) and won't be going back to work...
My head is so full of mixed emotions right now.
This is massive... Not only a new chapter, but a whole new life. A journey into the unknown.
If the last few weeks have shown me anything, it's that NOW is the time I need to be there for my mam. While she is still aware and knows who I am. While she is still so desperately trying to cling on to her independence. I am trying so hard to step back and let her. I don't have the right to take that away from her. Ultimately this is her journey- her struggle- her battle. That said, there's no way she's facing it alone.
She is very aware of what is happening to her and my heart breaks to think of how frightening this must be for her. I can't begin to imagine what must go through her mind. I know I'm frightened... terrified of what could be lurking round the corner... All I can do is hope and pray that I can stay as positive as I can be and find the strength to give mam the support and care that she is going to need.
Antonella, are you sure you don't just want to reduce your hours, so you can "keep your hand in" and keep your qualifications up to date? If mum is going downhill so quickly, how long will you be caring for her? What will happen when the caring ends? I know it's horrible to think about, but you may need support from others, especially as the journey approaches the end.
Has mum signed a Power of Attorney? Made a will? Are you the only child?
Have you or mum claimed Attendance Allowance, and exemption from Council Tax.
Hi Atonella and welcome. Yes, life does tend to bite you on the bum when you are least expecting it and it hurts too. Good thinking getting that POA organised, time to get that info out of the cupboard and also do some research into what is available locally and explore your LA website. I found some helpful info on there which wasn't 'put in front' of me by anyone.
It's going to be a long, hard journey but I can tell you are rolling up your sleeves and taking a deep breath. Make sure you are fully informed and try to recognise when, eventually, the situation is getting too much for you and you need more help. I know it's not funny really but I had to smile at your mum's essential holiday packing! Bless her!
Hope you find the balance between giving Mum support and allowing her independence which suits you both.
KR
E.
bowlingbun wrote:Antonella, are you sure you don't just want to reduce your hours, so you can "keep your hand in" and keep your qualifications up to date? If mum is going downhill so quickly, how long will you be caring for her? What will happen when the caring ends? I know it's horrible to think about, but you may need support from others, especially as the journey approaches the end.
Has mum signed a Power of Attorney? Made a will? Are you the only child?
Have you or mum claimed Attendance Allowance, and exemption from Council Tax.

Hi there.. I have thought long and hard about every possible scenario and have no doubt that I have made the right decision... Hopefully I will be able to do maybe one shift a month by joining NHSP to keep my hand in and my qualification up to date. I have no doubt that this is going to be a difficult journey and I am taking it one day at a time.. xx
Elaine wrote:Hi Atonella and welcome. Yes, life does tend to bite you on the bum when you are least expecting it and it hurts too. Good thinking getting that POA organised, time to get that info out of the cupboard and also do some research into what is available locally and explore your LA website. I found some helpful info on there which wasn't 'put in front' of me by anyone.
It's going to be a long, hard journey but I can tell you are rolling up your sleeves and taking a deep breath. Make sure you are fully informed and try to recognise when, eventually, the situation is getting too much for you and you need more help. I know it's not funny really but I had to smile at your mum's essential holiday packing! Bless her!
Hope you find the balance between giving Mum support and allowing her independence which suits you both.
KR
E.
Hi Elaine... Thanks for the welcome... Not quite sure what an LA website is.. My sleeves are definitely rolled up and I will try my best to do my best.. Although it wasn't funny at the time, I have had a little giggle or two about mams holiday packing since... That said however, this years case will definitely be packed by me.. or at least with me... I will definitely have to bite the bullet and get the info out of the cupboard... maybe just not today..
Not quite sure what an LA website is.
LA = Local Authority.
Start by googling LA and the name of your town/area.
Then search on there for Adult Social Services - as Elaine said there is a lot of help and support out there it's just not widely advertised ! Initially it would be a good idea to arrange a Needs Assessment for your Mum and a Carers Assessment for yourself - regardless of whether Mum is classified as 'self-funding' or not, you never know when in the future you are going to need additional help !

You can find out more about Needs and Carers assessments here:

http://www.carersuk.org/help-and-advice ... assessment
http://www.carersuk.org/help-and-advice ... assessment

You might find this factsheet on Carers Allowance useful too
http://www.carersuk.org/help-and-advice ... -allowance
Hi Antonella,

A huge decision to make and only you can decide on that. The scenario sounds a bit like mine as my mum also had vascular dementia and Alzheimers.

As Suzie says, contact your local authority and get on the waiting list (there will be one!) for a Carers Assessment. Much comes down to funding. As time goes on, and if you are in this for the long haul, you need to look after yourself and get regular breaks. Make sure you are getting all the benefits you can. Carers UK Adviceline can provide confidential advice on this. Attendance Allowance? Carers Allowance? Mum should not be paying council tax for example. Use any income you can possibly get to make things easier for you - cleaner, gardener, dementia sitters etc

If you can, I would suggest building in regular respite care breaks, both for you to recharge your batteries and for your mum also. As the illness progesses, mum may need more care than you can provide. If she is used to respite care, the move to a nursing home can be a little easier. Oh, and do not promise that this will never happen. If you have worked in a care home, you know more than most already.

Finally, use us for whatever questions you have, offloading or just to chat. One of the problems of caring is isolation. I found this Forum a lifeline for that as sometimes it helps "chatting" to people who have been there and got the tshirt.

Good luck, not an easy journey but mum is very lucky to have you in her corner,
Anne
Thanks so much for the advice Susieq and Anne. xx
Hi Antonella
I've a couple of things to add
1. Make no promises. Any promise may well have to be broken and you already feel guilty so why add to that. You can promise to always ensure she gets care and help but do not be specific about how and where.
2. Get that dementia information out of the cupboard, read it, re-read it and commit it to memory. You may need to recall something useful in a time of stress and it is all already there for you. You are not the first person on this path so don't waste time energy and guilt reinventing the wheel.
3. Don't try to be superwoman. Dementia is a disease that often needs a whole team of people, not just one lone carer who burns out and gets ill themsleves
4. Try to balance encouraging mums independence with getting her used to accepting help. It will be easier to get her used to new people now, in what ever guise you chose to introduce them. If shebecomes reliant or dependent only in you, that is a recipe for disaster
5 while giving up work is noble, remember too you are giving up contact with people, the sense of self worth and social contact. If you are going to care for mum you also need to care for you and get balance in your life.
Do let us know how it all goes
Xx MrsA
Very wise words.

I'm going to add something really 'horrible' that I don't even like to say, because it shames me even to think it, let alone write it down, but for all that it was something that 'hit' me when I 'took on' my 89 y/o MIL.

It's the 'loss of status' that happens when you become the carer to an elderly person.

HORRIBLE thing to say - just as horrible as when I realised that one of the things I hated about being widowed was my 'loss of status'.....how can that still feel that way in this day and age? Yet it did.

I felt, as a widow, and then as a carer for a very elderly person, that people 'felt sorry for me' and 'looked down on me' and were so glad they were not in my shoes.....

Sorry for saying that, but it's one of the 'nasty aspects' of caring (and says a LOT about society)(and probably a lot more about me!)