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Looking for your insights

(20 Posts)
Missmoneypenny Fri 27-Sep-13 08:59:54

Hello everyone. First off, i am not a grandmother. I'm posting on here because I'm looking for some cross generational insights, I hope that is OK. I'm in my 40s and have 2 young sons. In the last 10 years i have been next of kin to my grand father who developed parkinson s and then cancer and after supporting him as much as possible, i had to arrange for him to go into a nursing home. That was pretty horrible. Then, 3 years ago my Dad was diagnosed with Alzheimers and again i have been his main support because mum died 18 years ago ( I still miss her horribly). Furthermore, my father lives with my brother who has had mental illness all his adult life. Last year his mental state got worse and I pushed for him to be seen by a psychiatrist. Dad opposed me with all his might but I over rode him and eventually he came under the care of a crisis mental health team who put him on anti psychotics and now feel he has schizophrenia. While not exactly a surprise, it is still a shock to hear. I feel angry with my father, and this is where i'd welcome others' insights. From the start, Dad has been opposed to my brother being seen by psychiatry, and maintained a "there s nothing wrong with his, he just needs to go to Church/ back to college/ get a job" mantra. When i finally walked through the snow last January to go to my brother s GP and asked for help, Dad followed me down the high street ordering me not to go. I feel that his management has been disastrous, my brother has been undiagnosed and suffered God knows what mental torment for nearly 30 years. I'm finding it hard to do all the stuff i have to do for my father (I have power of attorney amongst other things) knowing he has handed over this awful baton to me (my brother's care). There is a joint case conference next week (my brother's and my father's respective care teams) and I have been asked to go. I'm now finding it hard, for this and various other reasons (his treatment of my mum being another) to have much respect for my father and feel motivated to carry on the gruelling work of supporting him.I also work 4 days a week. I'd welcome any insights people can add here, maybe from an older parent's point of view.

thatbags Fri 27-Sep-13 09:10:50

It sounds, not surprisingly, as if you are feeling overwhelmed. Ask for help. I have no experience of this sort of thing but my first thought is to ask your partner for help, and your GP or others who work at your GP practice. You don't have to do this on your own.

I hope you find the practical support you need. I think that would help you deal with the emotional issues you very naturally feel. Good luck flowers

HildaW Fri 27-Sep-13 11:00:40

My experience has been more in the elderly mental health area - but I'd always recommend asking any related charity for help e.g. Mencap. Its very easy to feel isolated with such matters but there are folks out there willing to offer constructive help. Local social services as well as your GP should be able to give you information about local support.

No one can care for others unless they too have back up and support - so just keep asking around. Lots of luck.

Granny23 Fri 27-Sep-13 11:21:46

MMP You have made a good choice in posting your dilemma here on Gransnet where many of us have suffered these problems in our 40s or 50s, come through them and now have the benefit of hindsight.

The first principal IMHO is that your own children must come first - something that your Father has obviously never taken on board. When you are being pulled in all directions it is easy to forget this basic point but if you use it as a touchstone it makes it easier to order your priorities.

Second principal is look after yourself . This may sound selfish, but in fact is in everyone's interests because if you collapse under all the pressures and suffer from stress, exhaustion, anxiety, depression, who will take up the burden you have been carrying, who will support YOU?

You need to take a well considered look at what you can reasonably cope with and then take a stance well within the parameters. There will always be, in addition to the responsibilities you have signed up for, the unexpected crisis, eg you get the flu, a child is ill, Granpa breaks his hip, escapes from his care home or floods the house. Most people would agree that as a working mother with two young children you have enough to cope with already. For the sake of your children and your own sanity, you must make it plain to social and care workers that you can only have a strictly limited input into the care plan for your Father and Brother.

You already find it difficult to support your Father. From bitter experience I would suggest that it is in fact impossible to support someone who has irrational expectations and demands. Best to leave that type of support to the professionals, who can be 'bad cop' whilst you can be 'good cop' with frequent short visits, bringing the biscuits, tea and sympathy.

HTH flowers and that you do not fall into the trap of becoming yet another woman whose own life is sacrificed to 'duty to care'.

HildaW Fri 27-Sep-13 12:24:25

Granny 23 - well put.

janerowena Fri 27-Sep-13 14:42:26

Completely agree - my own father ran my sister and I ragged after a stroke while I was in hospital having my 1st, and my sister's was only a year older. He had another of our sisters living with him, who had problems that he refused to admit existed. It all comes down to a fear of the family reputation being besmirched with madness, which was a huge problem many years ago. He got up to some amazingly awful things, partly because as his speech was impaired I don't think we realised that alzheimers was also setting in, and it put a huge strain on our marriages. Also he tried to run over our children on purpose in his wheelchair, not just once, so sometimes I do get very cross with people who try to get families to take in their elderly relatives. It's not all sweet little grannies knitting hats and gloves for everyone and doing the babysitting.

HildaW Fri 27-Sep-13 14:53:15

janerowena, oh yes. The outside world sees a frail elderly person...(Awww bless) whilst we might know them as someone who blighted our childhoods, ran our Mum ragged and is a self centred nasty piece of work. (Yup I speak from bitter experience - and the miserable old swine can be charm personified or poor benighted victim, whichever works best)

Nelliemoser Fri 27-Sep-13 14:56:49

Missmoneypenny

There are more which I found by Googling.
"support for families of mental health patients"

www.rethink.org/carers-family-friends

www.carers.org/help-directory/mental-health-conditions

I hope these help. flowers

Missmoneypenny Fri 27-Sep-13 21:15:31

Thanks everyone for your support and kind words. I think the stigma issue was very present for my father who once very shame facedly admitted to me he had had a "breakdown" in his 20s and used study as a therapy (in the spirit of : so should my brother). There is also mental illness amongst Dad's siblings, one I am sure is bipolar, another died of alcoholism. It's all swept under the carpet. I know my husband and children are precious and i need not to jeopardise those relationships, i have a huge fear of my sons also developing mental illness. I am seeing a counsellor once a week.
Thanks for the link to the Rethink website Nellie. They actually have a group called Sibling Connect and I went to their day conference last march, it was very helpful, if a little overwhelming too sometimes. But good to be with people who are in the same situation, I've also suffered the stigma of having amentally ill sibling. How many people, when asked "what does your brother do?" answer "nothing, he's got schizophrenia and lives with my dad (who has Alzheimers).
Anyway it has been really good to have your insights and see things from the perspective of a decade or two on.
Janerowena: outrageous your Dad charging your kids with his chair! Dad has kicked my eldest a couple of times and was warned in no uncertain terms by my husband, that if he did it again he'd be barred from coming to stay with us. He had enough reasoning power to decide to stop that. Although he did call him "you little bastard" lately, because he refused to drink a cup of Lilt!

absent Sat 28-Sep-13 00:46:27

I think our parents' generation really did feel that anyone with serious mental health issues was insane and, therefore, a shameful embarrassment to them at the very least. My mother lived with Mr absent and me for the last five or six years of her life and was dreadfully ashamed that I suffered from very temporary amnesia after a bang on my head and told me that I shouldn't tell anyone else.

Eloethan Sat 28-Sep-13 18:52:02

janerowena I do so agree with you about people making judgments re whether or not families take an elderly parent into their homes.

I'm sure that the majority of people would want (if practically possible) to help when a much loved parent needs supported living. But, as you say, not all people are easy to live with - some are downright inconsiderate and self-centred - and such traits don't improve with age.

Missmoneypenny You've certainly been through some very difficult times and still have far too much to do - working, caring for your children and having to look out for your graddad, your dad and your brother. I can quite understand why you feel too much has been laid at your door, particuarly as your dad hasn't been helpful re your brother's problems. I admire you greatly for soldiering on - I'm sure many would not have - and I hope things get better for you soon.

grannyactivist Sat 28-Sep-13 21:28:09

Missmoneypenny I would love to say that I have helpful advice to offer, but being in a somewhat similar situation with two brothers in law who suffer from schizophrenia I can only say it's unlikely to get any easier. My children are older now, but for many years we struggled with family holidays, Christmases and birthdays because of needing to do damage limitation. Do what you feel you can for your dad and brother and then try to hand over as much to the professionals as you can, so that you can continue to put your own children first. You've already learnt to juggle - a much needed skill in your situation I'm afraid. I think you deserve flowers!

Missmoneypenny Sun 29-Sep-13 18:48:52

Thanks again everyone and for the bunches of flowers ( I d insert an image here but I am on an Apple!). Interestingly the only person who's offered me a consoling bunch of flowers over the whole situAtion has been my MIL, not anyone from my father s family who have offered no help at all ( that's another of my gripes). Anyway there is a joint case conference between my brother' s mental health team, and dad's dementia team on Tuesday. I guess to try and look at ways forward. I'll be going and will remember the advice re not being talked into taking too much on. The OT from my brother' s team actually asked me, over the phone,whether I'd be my brother's carer after dad has to leave his home when his dementia gets too bad. I said no, there s no way I can take my brother in ( and then presumably be a carer for the rest of my life!). I'm entering unknown territory, my bro has never been in the right meds in his whoLE life (!) and I am hoping he will get better, but realistically I know there are no miracle cures.

HildaW Sun 29-Sep-13 21:48:26

Missmoneypenny, if you can I'd recommended you take an impartial friend with you or take an official looking file with you and make notes. So that when people do make suggestions you have them written down and at the end youread back the suggestions. Saying something like 'So such and such is going to be done...and I shall be doing.........(whatever you agree to , but keep it to the very minimum).
Good luck.

FlicketyB Mon 30-Sep-13 16:13:25

missmoneypenny I have not had to look after my parents but have taken responsibility for three different elderly relations over the last 15 years and still have responsibilities for one elderly aunt in a care home.

My one warning and piece of advice, particularly as your relations are such close family members, be aware of attempts by social workers, health professionals and others to emotionally blackmail you into taking on more caring responsibilities than you know you can manage. They will do it. They will do everything they can to make you feel you are uncaring, ungrateful and selfish. They will even suggest that your relations will come to harm if you do not take on responsibilities you cannot cope with. Ignore them, be resolute and stick to offering only what you can manage, let them say what you will and HildaW's suggestion to take a friend is very, very sensible. Do it.

Missmoneypenny Mon 30-Sep-13 19:31:18

Thanks everyone unfortunately I don t have a friend I can take tomorrow but I am resolute not to let them blackmail me emotionally. I have had over one year of counselling and this has helped me come to the realisation that being my dad s carer throughout his illness is not an option. I will also take pen and paper to write down what is said, my big fear is that when my brother is better services will melt away and we ll be back to square one. I want to make sure THEY are accountable and will continue to offer support.

Granny23 Tue 01-Oct-13 00:41:12

Wishing you luck with the case conference tomorrow. You will not be alone, as we will all be here rooting for you. flowers

Missmoneypenny Wed 02-Oct-13 09:34:51

Hello everyone and thanks so much for your kind words.
I went to the joint meeting yesterday and really feel quite low this morning. It was hard to hear from the mental health team person that my brother has typical paranoid schizophrenic ideas, like he's being watched, and he doesn t take the medication when people aren't telling him to. The mental health crisis team are only going in one day out of two. the person he apparentlY got on well with has gone on long term sick leave.
As forDad I haven't seen him for three weeks, quite a long time for me. I was told he is more confused than ever.
I just had this bleak feeling, dad deteriorating and having to go into a home; my brother relapsing and remitting as he takes/ doesn t take his meds, for the rest of his life. I feel very isolated and when I am at work ( there's a lot of issues over changes in terms and conditions) I have wanted to yell" don t go on at me about work life balance".
The only good thing is no one at the meeting tried to coerce me into doing more, make me feel guilty etc. The jist of it is the care agency has let them down badly and probably stopped going in weeks ago, but haven t been upfront about it ( they don t answer my call or emails) . The nice guy from he dementia team is following it up and trying to find an alternative agency. I think the next months/ years are going to be tough and I just have to no let myself get overwhelmed.

FlicketyB Wed 02-Oct-13 20:55:21

missmoneypenny, you have a difficult time ahead of you but you can always sound off on gransnet. You will find sympathy and understanding, even if we can do little directly to help you, as many of us have experienced, not exactly what you are going through, but something similar.

rosesarered Thu 24-Oct-13 20:17:07

what a very sad story. The advice you have been given on here is all very good Missmoneypenny, but the upshot of everything is that you can only do 'what you can', which as your husband and children have first call on you, probably won't be very much. Your brother should have had advice and meds years ago.My friend has a son [just like your brother] who lives on his own and has to take his meds [or not] he is best on his own and would not fit into anybody's family life.It's all heartbreaking, so much mental illness [in my family too.]Why should we have to bear the brunt of Fathers[who we don't love and have been poor Fathers at best] living with us, or wearing us out in middle age.you can talk to your brother on the phone and maybe e-mail, but not see so often, he might prefer that anyway.Wishing you some peace with this situation.