Im middle aged. Run my own business which covers IT consultancy and a bee farming operation. Married with 2 kids. Both our children are autistic. My son is 12 and has a PDA autistic profile and ADHD. My daughter age 15 is autistic, selective mute, is on an extremely restrictive diet, arfid.
Up until a week ago my wife has been the main carer for our children plus a small sideline self employed business, and ive been the principle earner. I myself have some autistic traits but not diagnosed, I also have Chronic Fatigue Syndrome/ME and Trigeminal Neuralgia.
One week ago my wife started intensive chemo and radiotherapy for locally advanced throat cancer. She now has a feeding tube and on constant pain killers. She is just at the start of the treatment so her care needs are going to escalate very quickly.
In addition my son has just been referred to orthopedics and may need surgery on his legs to deal with issues caused by tip toe walking, and my the school is just staring an emergency ehcp process for my daughter.
After just a week of taking on all the caring of our kids and my wife in addition to dealing with my own health issues, running a business to keep the money coming in, walking the dogs, running the kids back home from school when the school cant deal with them, cooking 4 completely different meals (for me, my son, my daughter and my wife) all that are different due the the situation, dealing with everyrhing my wife previously was handling, etc I feel broken, im exhausted, stressed, starting to have a CFS relapse and my trigeminal neuralgia is starting to flare up as a consequence. I really dont know how im going to cope going forwards as my wife’s condition plummets as the effects of chemo and RT take hold and she is on morphine and I need to feed her, if my CFS or TN gets worse than it is now im going to be completely incapable of giving the care im giving which will be disastrous for our family. Im struggling and not sure how long I can keep this up.
Welcome to the forum. Everything is darkest in the middle of the night. As I’m awake here’s a quick initial response. I went to the doctor with indigestion. A month later I was having my kidney removed due to Stage 2 cancer, so I know your whole family is in shock. The same month my mum, housebound for 30 years, broke her leg! Doctors all had tunnel vision and didn’t see the whole picture, then my brain damaged son was moved from residential care into supported living. A year later my husband died. All a long time ago now, but I wanted you to know my background as I really understand how the whole family has been turned upside down. I’m dismayed that you are not getting any support, especially your wife! It’s an impossible workload. Stop trying to be Superman and start yelling HELP. Was your wife offered extra support before she was discharged from hospital? Tell the school that you cannot drop everything when they can’t cope. They MUST deal with meltdowns during school hours. Another forum member, Melly is an expert in this area. What would help you most at the moment?
Thanks so much for the reply. My wife has another 5 weeks of treatment 5 days a week in Oxford (a 3 to 4 hour round trip) all as outpatient. Ive managed to get cleaners in weekly to remove that bit from my workload.
Unfortunately with the kids, while the school is doing everything they can, the council refuse to put them on the funding band they need so the school is struggling to support them with insufficient funding. So when there is a meltdown they cant really handle it, my son is already at the point where the school has advised the council that without further funding they may have to seek and emergency ehcp review in order the remove him from school. He’s not naughty or agressive or anything its just they find that issues cause disruption in the class and without the money to have a support worker with him it causes issues. So if im not able to collect him then he could end up having to be home educated, which would mean me having to stop work. Situation is similar with my daughter. Children’s services such a Cahms, etc have pretty much either refused to intervene or just play pass the buck.
Im usually pretty good at identifying things that I can offload, outsource or change to make thinks easier, but it feels as the mo I can see any more efficiencies I can make. I think to be able to cope with this intensity of caring, etc I just need some periods of calm now and then when im not having to be on high alert all the time. The only thing I can think at the mo that would give me that is to stop working or reduce work to half days max. So that I could get some rest when everyone is out the house. But doing that would not the financially sustainable for us for the duration of my wife’s needs.
I had a 4 year battle with the LA ending up with a decision from the Secretary of State for Education ordering the LA to approve funding. An organisation called IPSEA supported me. They were wonderful.
Are you claiming all the benefits your children are entitled to, and getting support from Social Services?
You also need an assessment for your wife. The whole family needs an urgent assessment of needs. That will need input and working together from the Childrens’ team and from the Adults’ services.
I suggest you email the Helpline as they can help you to make it very clear that you are in crisis right now. advice@carersuk.org
Are you taking your wife every day. If so you can ask the surgery to organise for transport everyday. I know as worked as receptionist and admin for 26 years. My mother in law got it to Northampton for a 6 week spell. She ended up with the same driver and at times it could be more than one person going so she was able to speak to other patients like herself. You need to be working to feed the family etc or be able to collect the children. The service is there as it’s realised that it’s a huge commitment for anyone to take on. Even if retired when we are talking of older patients
@Beeman welcome to the forum. To say that you are having a tough time is an understatement. I agree with the others, you need support. Do you have family or friends that could help you out at least in the short term, whilst your wife is having her treatment? No one likes to ask for help or admit they are struggling, but you may be surprised who steps up. As a well known supermarket says, every little helps. Good luck.