Newbie and help with Carers assessment - which council?

[LynnFreya]

Hi all. I am Lynn and I am the sole carer for my 82 year old mum who has Parkinson's disease with very beginnings of associated dementia and physical disabilities with arthritis. We lost my dad just over 2 years ago after a short 6 months illness with cancer. My dad had always 'looked after my mum' (very old fashioned relationship) even before her Parkinson's and she has found it hard to be on her own which is very understandable. She has expected me to 'fill his shoes' which has been difficult with a husband, full time job and living in Anglesey, North Wales when she lives 2 1/4 hours drive away In Manchester. I gave up 2 days work for the first 14 months after dad died to stay overnight/2 days with her but, as nobody covered my job when I am not in and I needed to get my income back, I had to go back to 4 days a week. This is still difficult for me to do my full time work in but at least I then have a day to go and sort mum's tablets (and there are many and she won't use the dose packs), many appointments, shopping, finances, showering etc. Mum is not at all happy to have any help in other than me which is quite a strain on me. I don't want to sound 'woe is me' but she can be quite horrible sometimes and doesn't seem to think of the impact that all her 'stuff' has on me, my husband, my work (several phone calls a day in work about post, diary dates etc. which is very distracting and I have begged her not to do unless it is urgent as I am losing concentration and making mistakes). She wants me to be her full time carer - I have told her it is not practical at the distance but she just replies with "well other people manage". She makes me feel very guilty when I am doing most everything she asks. We even got a loan 2 years ago and had an extra bedroom built onto our small bungalow to let mum move in with us but she "didn't want to move away from her friends" and after 2 years of it being empty it is now our home office and to be honest the way things have gone I don't think I could cope with living with her full time now - how awful is that? She doesn't want to do anything, won't go out unless it's for a medical appointment, won't exercise - which the Parkinson's consultant, pain Dr and nutritionist have all said is VITAL to her well being and she has just become an 'illness' and no longer a person. She has been on anti-anxiety meds which help a little but she has just decided that she is ill and cannot do anything and needs nursing - which at the moment the 'experts' don't think she needs and I know she is a lot more capable than she thinks she is but no matter how much I praise/encourage her she just doesn't want to try. It is very frustrating to me and the Dr's but I still end up feeling very guilty that I don't want to give up my life and move in with her like she wants. I don't want to leave my husband (he doesn't want to move), my home, my job or MY friends either.
Anyway sorry to go on - I actually wanted to ask about the Carers Assessment I have seen mentioned. Does anybody know do I ask for this from my council in Wales where I live or in England where I care for my mum? Thanks for 'listening'.

[sunnydisposition]

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

[LynnFreya]

Thank you

[Greta]

Hi Lynn,
I'm sure others will be along with similar stories to bolster your confidence. Your situation is not unfamiliar on this forum (not like mine - I just looked after my bedridden elder brother, who was surprisingly good about everything). Congratulations on everything you have done for your mother. But it is good that she did not agree to move in with you. You can't be expected to give up your life to your mother, who to be honest has had hers.

[Sally_17031]

Please don't feel bad about wanting to live your life! Your life is just as important as your Mum's if not more so, given you need to work long and hard to earn a pension these days for your own old age!

It has taken me a while to come to this conclusion with my Mum and Dad. My Dad has been unwell for over 10 years with my Mum as his carer. Things have been very bad for 5 years with my Mum's own health declining, including breast cancer, a suspected mini stroke and now suspected dementia. In this time they have refused pretty much all help, meaning everything falls on myself and my sister. They "don't want to be a burden", yet we take them to all medical appointments, sort out household stuff, finances and worst of all help them through the many crisis points they have reached because they "don't want anyone in to help". Any outside help we have organised or suggested have been poo pooed and any experts who come round are pretty much ignored and sneered at as interfering. And we let them get away with this because they were "adults".

My own turning point with this was when they lurched into another crisis a few weeks ago and I had to rush to Dad in A&E (again), not because he was ill, but because my Mum couldn't cope. Mum couldn't remember how he got there. As I stood in the hospital carpark trying to arrange childcare for my 2 young children whilst my husband did an emergency dash back from his job over 2 hours away, and my sister cut a holiday short, I decided that this couldn't go on and refused to take him home. He is still in hospital awaiting assessment. My Mum is in the process of being diagnosed with dementia. At that point I stopped asking them what they wanted and started telling them what was going to happen. It is now a case of what they need and not what they want. Coming to this conclusion has been massively liberating and whilst things right now are pretty stressful, in the long term I know we will get things in place to keep them safe and well looked after. Not by me. Not by my sister. But by someone who is a paid to look after them. I don't feel guilty about this, My sister and I have our lives to lead and whilst I care about my parents, our lives cannot be put on hold for ever to look after them. My sister has a job and runs a business. I have 2 small children and a husband who works 2 hours away and isn't around much. I gave up work 5 years ago when my son was born as I couldn't juggle Mum and Dad's needs with 2 small children and a job. And whist I don't regret for a minute the time I had with my kids, I do now need to get a job so I don't face a penniless retirement!

Sorry this is a bit of a ramble! But I just wanted to let you know that I think your life is important. You shouldn't have to give up your life to move near to your Mum. There are people who can come in to help her, it doesn't have to be you. Stand firm. Good luck.

[Anne001]

Hi Lynn, and welcome to the Forum,

I too refused to move in with mum (although I did move closer) and carried on working full-time. Your job as a distance carer is more to manage the care mum receives. I would certainly recommend contacting the CarersUK Adviceline (by email normally better) to ensure that mum receives all the benefits she is entitled to. Any chance of buying in carers for her, whether she likes it or not. The more people mum sees, the less she hopefully will rely on you.

In answer to your question re different districts. Mum's assessment will need to be done by her local council. Your assessment can be done by your own council. You may find local support as a carer but mum's support would obviously need to be local.

Good luck, not an easy situation,
Anne

[LynnFreya]

Thanks Anne, Sally & Greta.
It's so helpful to hear your thoughts. I think mum makes me feel worse as she constantly throws at me that she "had to nurse her mum for 6 months when she was 15" and thinks I should do the same. I have pointed out that she got married at 18 and never went back to her mum to nurse her after that but she just blanks me - in fact any time I say something against what she wants she just changes the subject - annoying!
It has taken me nearly 2 years Anne to convince her to have a cleaner for 1.5 hours every other week to at least help me with that but she will not consider having "strangers" in the house even to take the pressure of me or to give her a bit more company. Macmillan nurse (they now do Parkinson's) had tried to get her involved with various classes even getting a lady to visit to have tea and a chat but mum won't join in and never invited the lady back. I think the Macmillan guys and another voluntary group that offered to help with appointment visits have given up on her as she always says no. The sad thing is she then feels lonely and that people don't bother with her but doesn't get she has put them off.
Sally I am sorry you too have been having a tough time - you sounded like I do - Mum says all the right things about "you shouldn't have to be doing all this" but when I suggest help just point blank refuses unless it's from me. I think you are right - I am getting to the point of realising that I am going to have to toughen up and let mum know that I can't carry on as things are and that she will have to accept some outside help. The horrible thing is that she calls be a bully if I even suggest changes and just thinks it is my duty to nurse her. I really am not a bully and have tried so hard to do everything she wants. I hope your dad and mum now get the help that you all need and thank you for taking the time to reply to me.
Greta thank you for your kind words - I hate to admit but I am very grateful that mum didn't move in when I asked her - I realise I couldn't have coped 24/7 with her. Well done to you for caring for your brother.

[MrsAverage]

Hi Lynn

- in fact any time I say something against what she wants she just changes the subject - annoying

Sounds a good tactic to me. Suggest you use it on her.

In my experience anyone who calls someone a bully is in fact the bully themselves

Sounds like she needs to live with the consequences of her actions in turning everyone away.

Counselling and assertiveness are your best weapons. There is much in the latter online

Good luck
MrsA

[LynnFreya]

Thank you Mrs A. I will look into both. Hard to learn to be assertive as my parents brought me up to do as I was told - in fact I realised the other day when mum said something not nice and I thought "I'll just keep quite like I used to as a child - much easier - at least that way I don't upset mum". I am 52 next week and am still trying to be a "good child" - lol - I need to grow up I think!!! I will definitely look into getting some counselling/assertiveness help for myself - my employer (who has been so good with me with all the mum issues) told me my mum is manipulating me - I have tried not to see it like that as I find it upsetting to think that she would do that to me but I think she does a bit which I suppose is her self preservation mode - but time for some changes I think.
Thanks for your help.

[jenny lucas]

The manipulation won't be 'conscious' if you see what I mean, but 'instinctive'. She probably has no idea she's doing it. But, of course, that does not justify it in the slightest.

It's really hard for children who have been' programmed' by their parents, to realise just how much they have been programmed - or brainwashed!

But your mother's expectations (and your father's) that you are a 'little girl' and therefore have to 'do what you are told' is completely irrelevant. You're an adult, you have a life of your own, etc and you have NO 'duty of care' to your parents.

All the 'guilt trips' being laid on you are simply to get you to do what your mum wants. Resist it. Get your husband on your side, and with his reassurance simply stop doing everything you are currently doing for your mum.

It does sound like residential care is going to have to be the next step for your mum, and so why not start looking out suitable places for her?

PS - thank heaven's you didn't let her move in with you - do not do this, do not EVER do this!