Carers are wonderful people

I have read this thread with great sadness and sympathy - and I feel humble
in the face of so much devotion and hard work. I have always felt guilty because caring for our mother when she developed dementia at 87 fell almost wholly on the shoulders of my sister. I was working full time in London and helping my daughter financially, so I could not afford to give up work. My sister lived close to my mother and had never worked outside the home. My mother lived with our brother, and he was nominally her carer, but he was himself an alcoholic with severe diabetes and high blood pressure. He had had both legs amputated at the knee. He and my sister had never got on well together, but I was close to both of them.
I went up to Manchester as often as I could, but at the time one of my daughters was going through a very rough period of her life - she was addicted to amphetemines and I had to go to Kent most weekends and clean the house and stock up with food - she had four children and her husband was working abroad. Her eldest boy has Aspergers and just withdrew into himself, and the girl of ten was changing nappies and making bottles for the one year old. I felt guilty whatever I did.
All I could do for my sister was to take her for a few days holiday in The Lakes whenever we could get some respite care for my mother. When my mother died, it was a great relief - she was 91 and although there was nothing wrong with her organically, she just 'turned her face to the wall' and refused nourishment. The hospital wanted to feed her intravenously, but my brother and sister could not see the point, as her life was a misery to her. She did not recognise them and lived in a constant state of anxiety.
Since her death,I have been able to take my sister on some really good holidays all over Europe - our brother died soon after our mother.
She always says she understands completely why I was unable to be more help, but that does not make me feel any less guilty.

Dilley and hugs - and Mishap too

Huge sympathy to all those caring for a sick spouse. My OH has Parkinsons and is at a stage where I do not yet have to describe myself as his carer, although his ability to enjoy life is greatly limited. I know that there are more challenges around the corner and we have to try and live for the day.

I do empathise with the concept of no longer having someone there to talk things over with, as I find myself just trying to protect him - it is no longer an equal partnership and I understand that this is a loss.

Dilley - I do understand about the guilt of looking for respite care - I feel guilty just going out and leaving OH on his own as I know he would rather I was there. But in the end we have to take care of ourselves as well, and we are no good to our partners if we "go under."

I think someone has already suggested the Carers' Association - maybe they can provide some support. I used to work as a social worker and we always made sure there was care available so that carers could attend support groups. Have you had a carer's assessment by Social Services? - you are legally entitled to this - it is your chance to have your needs taken into account and help provided for you - that's the theory anyway. The assessmjent is a legal document and the SSD have to address all the things on it.

I can't imagine what it must be like to be a full time carer. I admire you all and wish you every good wish going. Unfortunately 'wishing' is not enough and the government needs a royal kick-up the backside to acknowledge just how much they need to support those in need , not only with financial support, but with valued respite care.

It is a hidden, but growing issue, and a wake-up call is sorely needed. Attendance allowances stopped when state pensions kick-in is a shame.

I have a grandson with special needs, and this issue is close to my heart. Unfortunately I am unable to help because he lives in America. America gets a bad press generally, but in this case, they are streets ahead of England.

Hi I am a full time carer for my husband who is bed bound with bed sores at the moment. I am 62 and he is 63. I find it hard the worst being the loneliness. I have nurses coming in daily and carers to turn and tend my husband 4 times daily which is very tedious. Our home is not our home. My husband is not coping with the situation as he was a very active man running 3 businesses,water and snow skiing plus we travelled quite a lot. He now can do nothing as one arm is paralysed and the other can only move a bit. I have to feed him and tend to his every need. He cannot walk and has difficulty talking. He has an unnamed generative disease. I am feeling very cross that this has happened to us and we are to have no retirement together. I will need respite soon and am feeling guilty about him going into respite for a week even. Cannot find anywhere above 2 star - very worrying. Any ideas. Everything is a challenge no one helps you decide in case they are accused of "favourites". It is a constant fight to get the best for my husband us carers are the forgotten few no matter if we are young or old. I would like to attend a local carers club but have no one to sit with my hubby so can't go! Ironic isn t it we need the time out but can't leave our relatives!

helenb; just keep talking on this forum whenever you need to.

Hello everyone,

So many of your stories rang a bell with me. I work for http://www.carers.org which is a great online community of family carers, many of whom share the same challenges, worries and experiences that you do.
There is a chatroom, discussion boards, blogs and regular events / online parties to which you'd all be very welcome!

Best wishes

Hi grumpy old woman, I am newcomer to gransnet. I am 82 and carer to my 81year old husband who is arthritic and has alzheimers. We work well together, but sometimes I feel stressed when he continually asks the same questions. He knows he is ill which means he gets very upset when a programme about alz. comes on television, so of course I switch it off. I try the deep breathing exercises etc. but this doesn'talways work. Any ideas?

I have just given up work as a carer to look after my 3 grandkids who are now living with me they are 2,4&5 we have just started getting them new schools to go to in september I am 65 and my husband is 64 so it has been a bit of a shock but could not let them go in to care, if there are any others who are looking after their grandkids I would love to hear from you with any ideal,s.

Hi everyone,
Good to see some new carers have joined us,it can help to chat to others about your problems and makes you feel you are not alone bearing all the resposibilities.
I know exactly what you mean nan2five when you are unable to talk about things or interact with your partner and I used to lose patience with my husband at times,I never meant to but I guess the stress does get to us occasionally.
Enjoy your cups of strong tea,it is supposed to help soothe the nerves,definately what we all need.

Yes carers are indeed wonderful people as are volunteers.
In Northumberland carers and volunteers have been invited by the Duchess of Northumberland to Alnwick Castle for a reception to thank them for doing a great job. It is expected that the Queen and Duke of Edinburgh will also be there. This event is by invitation only.

Monday already! Had a better weekend than of late.Everything seems to "kick off" at the weekend usually.Maybe 'cos it was Fathers Day it was better.Thank goodness Iv'e now got someone I can "talk" to.How are you all? It was inspiring to read your comments.Off for my first cuppa of the day,I do like a nice cup of tea!

nan2five, hi there! Chat away! A constant stressful situation is very wearing and it's bound to affect you. I'm sure some of the grans on here will empathise with your situation.

I also care for my husband.He was diagnosed with cancer 2 years ago,although he has multiple other health issues.I am ashamed to say, I lose my patience on occasion,then I feel bad. It can be so wearing on a body.The one person you want to talk about things to is just not able to interact,does anyone know what I mean? This is my 1st post on gransnet,hope I haven't put you all "off" me!

Hello all
Wow, smiley my love and thoughts go to you and you darling hubby
big hugs to you both. Try and find some time for yourself, it is allowed!
Your admiration for the man you love is wonderful, the courage he is showing and the courage that aspire to are the same. I cant pretend to know how you feel, but I if you need to offload, I'm here for you.
Also catkins, big healing hugs to you, its early days, keep the photos out and talk about him when you need to.

Also lots of love and hugs to eveyone out there who is having a tough time.
We grans have the knowledge and the ability to listen, off load whenever you want.
Extra special love and hugs to you all
xxxxxx

I dont want to be told Im wonderful. I want enough money to pay the bills ,enough money to keep us warm in the winter.
I want the schools to properly assess needs. I want to know those I care about are safe.
I want always to be able to pay the unexpected vets bill for the much loved animals which provide those we care about with comfort and id like sunny days in the garden

I'm a grandmother [63] with custody of my grandson since he was 2. He will be 12 next month.
I also home educate him.
Hard work but great fun.

" meandmine " [] I hope you will continue to pop onto gransnet and have a chat, even chatting to people we don't know can help ease the burden a little, just to expres how you feel and air your thoughts, im sure there are many good listeners on here, take care Sue []

Hi all, New to this but here goes. I am a single parent with 5 grown up children and an 11 yr old with Special needs, 10 grandkids!! As with others on here it's always a struggle to get support and help with my dd but i am a lucky as my grown kids help, to be honest without their support i would be worn out, people just see a nice little girl (which of course she is) that seems to have no problems outwardly but the reality is on day and night basis it's really draining, what's a full nights sleep as i can't remember!!!

I know everyone means well but I have tried so hard to get help and advice in order to get the best care for my son who is extremely vulnerable. My son was put on Care Programme Approach in 2008 because his Learning Disability Specialist was very concerned about the care he was recieving at that time, No one seems able to step in and just say to social work services, this mans care and support is really good now, it's what he needs and is working, keep it going. Instead they will cut staffing and his service will eventually collapse.
I feel so desperate, and so tired of all the worry and stress I lie in bed at night and think I can't face another day.

I am one of the grandparents who over 20 years has had to take on grandchildren. This we do and dont begrudge the love and care we give but we deserve abetter deal with financia support. I now have my grown foster childs teenage child living with me and getting a decent supportive financialpackage is soul destroying. In reply to emails stressing the difficulty I get emails telling `me I am doing a good job. I do not want patronising comments I want as other grandparents in my position do enough money to buy him shoes without it becoming a catastrophe.
If my grandson had gone into the care system it would have cost the borough thousands and done him no good. If throw the towel in he will go to a hostel and receive £40/50 per week and drift about.
Also of course I will still be morally responsible for clearing up any financial or emotional messes he gets himself in.
A damaged teenager needs support and structure not a hostel room.And if one more person tells me to put him the army I will scream.
A comparative look at the costs of family care and the care system is long long overdue

Hello Meandmine,I am so sorry to hear your son's circumstances are changing for the worse because of the cutbacks,please do not despair,try to keep going for the sake of your son,he needs you to fight in his corner,
It is only a suggestion but Age UK is an organisation that may be able to help or advise you,they offer their services to anyone over 50 which would be you and as you have duty of care for your son because of his disabilities,it may be worth a try.Each county has their own group responsible for that area,you may be able to find their local phone number in your directory or try their local charity shop.
There is an on line site.
www.ageuk.org.uk.
I have a friend who is in the same situation as you,her disabled daughter's welfare is suffering because of the cutbacks,she has been pestering our local MP,she has turned to Age Uk for advice.
I do hope your problem will be resolved to give you back your peace of mind.Stay strong,we are all here for you.

meandmine my heart goes out to you and to others who are also going through similar circumstances and may be feeling the same as you. Carers are wonderful courageous and selfless people who give their time because they care and love. Your son and family are very, very lucky to have you and would miss you dearly if you were not around anymore. I'm not going to tell you to get advice about your son's rights, but you very clearly need some help for yourself, please speak to someone you trust about how you feel, maybe you have an understanding healthcare professional you can speak to or a counsellor that you can talk to. Is there a group of other carers that you can get together with for support. Life can be very tough, challenging etc. but you are clearly a very strong person to have got through the last 35 odd years in the way that you have, and I applaud you for your strength and courage. I'm sure that there are others here on Gransnet that can empathise with what you are going through and that they would be willing to be a listening ear.

I have been a carer for my son most of his life, he is now 35. He is blind, has a severe learning disability, challenging behaviour and suffers from depression.
My families life has been a complete hell, not because of our sons disabilities, but because we have had to constantly fight for every service he needs. Now with the local authority cutbacks social work services are trying to claw back money by cutting his care package.
The ongoing stress of having to live like this has had a terrible effect on our physical and mental health. My son now has his own home and has made tremendous progress over the last year, because of the wonderful support service he has, with challenging behaviour reducing, a better quality of life and he has been so happy which has made us happy too.
Now because of the cutbacks all this is going to change and we know all the progress made will be lost because of staff cuts.
I am so tired of fighting and don't want to live like this anymore, I wish I were dead so that I could have some peace. Carers are wonderful, they give up so much for others, sbut I feel so weary and cannot see that things will improve, I feel it's not worth going on anymore. Please don't tell me to get advice about my son's rights, I've tried that and Human rights are not automatic for the disabled, just another thing to fight for.

Thank you Catkins for your kind understanding and good wishes. It is only when you have experienced the difficulties yourself that it is understood. I need to be by my grandchildren because I don't know how I will cope when something happens to my mum. I won't know what to do without her telling me (LOL), seriously though I really don't know how I will handle it, we have been together so long.

xxx