I am a Mum and carer for my two adult disabled children. My son has Cerebral Palsy and needs total 24 hr care. My daughter has Down syndrome and needs to be looked after 24/7, but can do most of her own personal care. I have cared for them for nearly 40 years and adore them both.
I do have a couple of part time carers who are funded by CHC, but have been looking for another carer since July last year. I am really struggling at the moment as I broke my wrist in two places a year ago. They didn’t pin it, they just manipulated it in A &E. The fracture moved two weeks later and it was too late for them to put it right. I now have constant pain in my right wrist and daily pain in the muscle at the top of my arm from the manipulation.
Things are getting me down at the moment and I get angry with myself for letting it. Obviously the pandemic hasn’t helped emotionally either and now one of my carers has Covid so cannot come in. Just one thing after another.
I’m not surprised things are getting you down at the moment. You have been caring for a long time, through a pandemic and are in pain.
If you can’t find more more care workers to employ and one is off with Covid, would it be worth using a agency to tide you over?
Do you have any idea of what would work for them in terms of planning their care for the future? (I appreciate how difficult this is, as I need to think about this too.)
Have you started talking to Social Services about long term plans for your children?
Do you want them to live in your house when you are no longer around to care for them?
CHC is supposed to cover all needs, and if you can’t find a carer, then they need to find one for you.
(I do understand the difficulties of having a child with LD. My son is now 42, lives alone in a privately rented flat with carer support, a move that had to happen because of a health issue)
Hi,
Thank you for the reply. They will remain in our family home when I am no longer around. They love being at home and we love them being here. We have a good life, it is just sometimes stressful dealing with carers, paperwork etc
The carers I do have are lovely and have been with me for some years. In our area, there is a desperate shortage of workers. Everyone is advertising for staff in all industries. It seems that since furlough and the pandemic, people are just not applying for jobs.
The trouble with CHC providing care is that they will possibly use agency staff and having different people in our home daily would be stressful for the family, plus it takes a few weeks to train a carer to take care of my son and he likes consistency.
Agency isn’t really an option as training takes a few weeks and then you get a new carer plus my son doesn’t do well with change and new people.
Long term, I really want them to remain in our family home and that is what they want as well. I would hate being parted from them and they need to stay together as they are so close. The house is paid for and will be theirs when we are no longer here with my nephew overseeing things.
Strangely they do pay a good rate. We pay the highest rate for a sleeping night duty in the area and a good day rate. I might have to ring CHC and discuss any options they might suggest.
Hi Sue. It’s amazing how many “old lags” there are around like us who have been caring for many years! It’s like a marathon without the crowds cheering us on…
Your comment about calling CHC is a good call: they are there to help out when things aren’t going to plan and having half your workforce down is definitely one of those things!
It seems like a small team to be providing that amount of care, and if your wrist is affecting what you can do then they may need to increase the package. Apart from which, the long term plan should be to make sure you’re doing as little of the actual caring as possible, ready for when the time comes. We did that with our autistic son, and although he lives away from us (and therefore that’s a very different situation) we make sure we have regular family time. But our son has more or less accepted that mostly it’s his workers who do the caring and so he’s as ready as we can get him for the day when we’re not there for him.
It’s rubbish to have to be in that position when you have to plan for not being there, but - well, it’s sort of an extension of writing a will, really.
Thank you for your reply. We normally have a team of four doing two or three shifts each per week and then I do tea times and weekend days. That works ok when we have the full team, but as soon as we are down one carer, you panic in case one of the others go sick, which of course has happened. I love being Mum to both of them and we go on family breaks and holidays and for meals and days out. It is just that I would like to take a step back from the physical care. I then have this huge guilt complex for saying so.
I said as much at a CHC review, saying I was in my 60’s and needed more help. I was made to feel awful and told ‘many people care well into their 80’s’. Then I felt wretched. My oh and I have a big holiday coming up in May and I am panicking about leaving my carers short staffed.
What a dreadful thing for them to say. I’d report them!
We were both, we thought, fit as fleas at 50.
At 54 I developed kidney cancer and nearly died.
The following year my husband had a heart attack and died, suddenly, at 58.
3 months later I was disabled in a car accident, if I’d been driving my own car the Police told me I’d have been killed.
Fortunately by chance I was driving my husband’s Range Rover, which was shortened by 2 feet in the accident and written off.
For the next 5 years I was using sticks or crutches until I had 2 knee replacements.
None of us know what the future has in store for us, the more planning we do for the time when our disabled children have to manage without us forever, the better it will be for the children and those caring for them.
I am really sorry to hear of all the troubles you have had. I would love to carry on caring full time for my children, but I physically can’t do it now and am trying to get them used to being cared for by others. I have just emailed CHC to ask if they have any suggestions but the contact is on leave until 28th Feb. We will see if they have any ideas.
I really shouldn’t read posts until I’ve had my blood pressure meds.
You have EVERY right to say “enough.” No one should ever make you feel guilty for all you’ve done, and no one should show people in their 80s as paragons of the right way to do it. The right way is the one that suits you. But in my job I’ve seen too many carers carry on until they drop - literally. The trauma that causes because they were too frightened to consider the future is long-lasting and devastating. The first time I came across this was an 82 year old man who refused to consider alternative care for his son who had autism. He died in his sleep over a weekend - no-one is entirely certain when - and the only reason he was found at all was because the day centre bus turned up on the Monday and were surprised to see that the son and his dad were not out on the doorstep as usual. The son, who was non-verbal, was found in a dehydrated state sitting at the foot of his dad’s bed, waiting for him to wake up. He was placed in an emergency placement - no preparation - and this very docile young man became very agitated and challenging. It was only on his 6th placement in 18 months that the new placement’s manager said: “Don’t review him for 6 months. His life has been so unsettled he needs some stability. We’ll manage.” And finally he began to settle into a quieter, less stressed life.
In my working life as a professional supporting carers, I always promoted preparing for the future to prevent that sort of miserable start to a new stage in life. It’s traumatic enough, without that. No professional in any field of health and social care should be promoting carrying on regardless. It’s cruel.
Ok…I’ll get down off the soapbox now. I need a coffee.
Hi Charles,
It is frustrating dealing with the various agencies as everything is a box ticking exercise for them. We are now going through the process for a DOL order. For 41 years my son has been happy without one. He really doesn’t fit into all of their boxes so answering the questions is not a simple A or B.
My daughter who has Down syndrome apparently doesn’t need one. How on earth do they figure that one?
I have emailed my contact at CHC but she is on annual leave until next week.
My daughter goes to a sheltered work project 3 days a week and is funded by direct payment, but there is no funding for any other care for her apart from a two week break for my partner and myself. I adopted both of my children when they were babies and have never asked for anything or been a nuisance to anyone. I have had a business and provided everything needed until a few years ago and still financially support everything they need, which I really dont mind doing. I just need a bit extra support now.
Ok. Well, you have the right to limit the care you provide - or to end it altogether. The choice is yours, not anyone else’s. You don’t have a duty of care: the authorities do.
You’re well within your rights to set out your limits and to gradually change them until you’re not providing care.
I take it, regarding the DOL, that they’re assuming your daughter has mental capacity? It’s generally assumed unless they have a reason to test it, and if you believe they have that wrong you’re within your rights to ask them to test it. There are four steps to take when making a decision, and the vast majority of cases where capacity is assumed is when they actually fail on the third step. For clarity:
Take in and understand the facts required to make the decision.
Remember the facts long enough to make the decision.
Weigh up the pros and cons, using the facts available, to make the decision.
Communicate the decision.
Mental capacity is specific to the decision being made. The person whose capacity is being tested must be given every chance to be able to do so, so if they function better at a certain time of day, or need information in a specific format, that should be done to help them as much as possible: the aim is always to make sure that people have the best chance to make their own decisions, so that they remain as independent as possible.
My sister had trouble with the third one, which is quite common in learning disabilities and autism. So I’ll give the example that eventually tripped her up - figuratively speaking. She’d had a small stroke that affected her left foot to the point where she dragged it a little. Two days after the stroke, and purely because they wouldn’t let her off the ward to smoke, she attempted to discharge herself at 1am on a Sunday. And I was contacted by the hospital for a lift. They told me she had capacity. I told them I was insisting on a mental capacity check and told them why - she would fail at the third stage. Because she would be entirely focused on the outcome she wanted without considering the issues. So she was asked - eventually - that because she drags her foot now, and would have to negotiate uneven pavements and steps to get to her flat, what could go wrong? Her reply was “absolutely nothing.” So no trips, falls or anything else came up. And they had to keep her in on a Best Interests decision. Not bad - a win at 3am! I didn’t get any more sleep after that though.
Anyway, the point is, it’s worth getting an assessment if you have any concern that your daughter will struggle with decisions around where she will live in the future, or managing finance, or whatever.
I do understand that I can choose how much care I give, but in reality, finding suitable carers to take on the role is a real problem at the moment. Most care homes where I live are almost begging for staff. At the moment, I don’t want total care for them as we still want family time at home and out and about but over the last few years I have ended up doing the bulk of care.
My daughter doesn’t have the mental capacity to make important decisions but with regards to living accommodation, the house is theirs until they no longer need it and younger family members are more than happy to become ‘guardians’ as such.
I used to be a very social person , but over the years I feel I have become quite isolated even though I have my family. I always laugh when watching Who wants to be a millionaire and they have 10 phone a friends to choose from.
Sorry as it sounds like I am a miserable old woman, but I am generally happy and can always make others smile. I just think lockdowns etc have taken a toll.
A lot of us have been doing too much for too long.
Your future plan sounds perfect, but you need to find someone, ideally two people who can share and support each other, and to support you and give you a break.
My son’s care agency have used newly retired police officers, and young people who would like to go into social care or the forces, on a course at college.
I can’t remember what the course is called, someone here may know.
Whether or not someone their own age would work for your family is very much a “suck it and see” situation.
Is there a college/university near you doing a social care course?
Maybe some of those students would be suitable? I’m sure they’d welcome an income to support their studies.
Maybe a nurse on a career break, perhaps with young children?
In the New Forest, there is a “Volunteer Bureau”. Maybe you could find someone through something like this, only pay them?
Again, thank you for the suggestions. My son is clear that he doesn’t want a young lady doing his personal care and I really appreciate that as if I needed care, I wouldn’t really want a young man doing it. Especially not a good looking one:) . Joking aside, I will look around and see if we have any of the alternatives you have mentioned.
Sometimes, it just takes someone else to help us to look outside of the box. Thank you.
A few more possibilities could be someone doing Duke of Edinburgh’s Awards, or someone involved with the Red Cross or St. John’s Ambulance or Scouting? Or someone hoping to be a Paramedic?
It’s possible to insist on carers of a specific sex, although it can limit the possibilities. Because our son doesn’t need any intimate personal care, at least presently, it’s less of an issue for us. But during the coronavirus situation we’ve found that most of his newer staff have been male, suggesting that with the narrowing of job opportunities, more men are trying the care work option, at least in our area.
and my introduction.
. Joking aside, I will look around and see if we have any of the alternatives you have mentioned.