Hello My name is Linda, I joined a few weeks ago but just got round to introducing myself had a lot going on, I am a carer to my grown up son and daughter they both have downs syndrome, I have been on my own caring for them both now for over 5 years, Had help getting free from a abusive marriage of 38 years, We moved into a bungalow just over a year ago due to my son having arthritis in both is knees, My daughter has a heart defect and I also have fibromialgia, Its a lovely 3bedroom bungalow but I feel a bit isolated, I don’t have any family our friends, Not been able to get out and about much, I had a fall in march of this year and broke my hip had to have a full hip replacement, I am still recovering , Also just found out that I have osteoporosis, And received a letter the other day from my doctor to say I have a blood disorder MGUS, I am just waiting for my appointment to go back to see my consultant to discuses all this, I am so frightened, All I want is to be able to care for my son and daughter. I have not had much help with trying to get over my hip replacement , I pay for a cleaner to come once a week , My son and daughter have a social worker, I don’t get any help, I am frightened for the future
Hi Linda,
You certainly have a lot on your plate. I found this on line
Although most people with MGUS will never experience any symptoms and remain well, being told that you, or a loved one, has MGUS can make you feel anxious or uncertain. Our Support Line team are just a phone call or email away if you’d like to talk. They’re available Monday-Friday 10am-4pm on 0808 2080 888 or at support@bloodwise.org.uk.
You could give them a ring or send an e-mail. It might help, especially if you tell them about your caring duties too.
Do you see your children’s social worker often? Perhaps talk to them about getting some help for yourself. Are you with the grown children all day? Perhaps see your doctor and ask about some counselling for yourself. If the tests for MGUS come up with bad news and you have to have some treatment, how will the children manage?
Do you manage to get out at all? What would help you most in your current situation?
Well done for escaping a bad relationship and finding your bungalow. That means you are a strong person but even the strongest need help when it becomes too much.
KR
My son is 40, with severe learning difficulties. You should be getting masses of help.
What are your future plans for your son and daughter.
Will they be able to stay at the bungalow after you have passed away?
I’ll be back later. Appointment this morning.
Hello Elaine and bowlingbun
Nice to meet you.
I sent a email to blood wise a few days ago. Should be getting a reply back soon, Don’t see my son and daughters social worker much , I do contact her by phone when problems come up, But do not get any help for myself, I have said many times that I need my own social worker our a family social worker, She has contacted carers and I am waiting for a phone call for some one from carers to arrange a visit to come out to see me, My son and daughter go to day centre Monday to Friday, I don’t know how I our my children are going to manage if I have to have treatment for MGUS,I don’t get out much only go out when I have hospital appointment , I do my shopping online, I would like to be able to go to some craft groups, Have a friend ,I suffer with anxiety and have had bad panic attacks, Don’t know if its mostly due to been abused .I really need someone to talk to I feel very lonely frightened, I have had private counselling in the past , I had counselling for 3 years, But could not go anymore due to my son been ill with Arthritis in both his knees.
My son is 35 and my daughter is 31 I have not asked for help in the past got through with broken ankles skin cancer , But the hip replacement has been the hardest and still in recovery from it, I just don’t seem to be getting anyway with help ,When I got away from my abusive husband I did ask social worker for help in looking towards the future for my son and daughter for what’s out there for them if anything happens to me, All I ever got was we can do that later, I need help know, I don’t want my son and daughter to be split up my daughter would not be able to cope with out her brother, it would be hard for them both not having me there, I have thought a lot about if they could still stop in the bungalow but they would need 24hours support,
24 hour support in the bungalow should definitely be an option for them.
To start the ball rolling towards getting more support, I suggest that you write to the Director of Social Services, make a formal complaint about the lack of support so far, and ask for an URGENT Carers Assessment due to your recent diagnosis and the fact that both your adult children have high care needs.
Hi bowlingbun Where do I find address to write to Director of Social Services, I am really low and stressed today, Tried all week to get to speak to my son and daughters social worker left her loads of messages, Same this morning, I ended up phoning the duty office up they put me straight throw to her, I just feel that I am just been ignored nobody wants to know our help. I have always tried to manage myself in the past , But its getting harder with all what’s going on, My son and daughters social worker is coming out to see me tomorrow to do another assessment , I am struggling and stressed today has my daughter has come down with a tummy bug, I have a hospital appointment tomorrow which I told social worker, I cannot leave my daughter on her own, I am going to need more help if I have more hospital appointment due to been diagnosed with more illnesses. I have cancelled my appointment for tomorrow its a assessment for footwear adaption has my left leg is longer due to hip replacement, This is the second time I have had to make another appointment due to times with my son and daughter going to day centre, I am so feed up of struggling , And feeling nobody cares,
Just do an online search, giving the name of your authority to start with.
So for me, I’d first search for Hampshire County Council, then Adult Services in the search bar.
You are going to have to be very firm and tough. In your situation, just say “I CANNOT GO ON LIKE THIS” and say if they can’t sort things out then residential care is needed. That should concentrate their minds!
Each child should have a Needs Assessment, then they should give you a Personal Budget, then a choice of how it should be spent. Have a look at the Care Act Statutory Guidance for full details.
Hello Linda, I’m Ali. And just like you am new to the forum. I also look after my son who has Duchenne Muscular Dystrophy which is a different kettle of fish however I’m doing this more or less on my own. Being scared somewhat goes with the territory, but you are stronger than you know! I’ve found that the help that everyone is so confident is out there is often a bit of a quest and actually give yourself time to rest. Breathe… when you are ready look for the help you need and it will I’m sure be there. The future has to look after itself! 
Thank you bowlingbun for the information
Nice to meet you Ali thanks
Hi Linda. Hope things goes well with your children. I have a question, when you say you feel a bit isolated in your bungalow, have you tried going on housing registry and get a place in a city? I’m sure giving your conditions, you will be get a high priority and they can relocated you somewhere better.
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