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my story - overwhelmed by caring responsibility - Carers UK Forum

my story - overwhelmed by caring responsibility

Tell us a bit about yourself here.
hello :)
I'm carer to four members of my family, and I work part-time. I'm exhausted. I can tell I'm suffering the effects of stress and so I'm concerned that I will simply crash. I feel I can't get anyone to listen or act.

This is a very long story - be warned! make a cup of tea now.

The people I care for..
1.My adult son who lives in his own home is a young person with ASD, ADHD and dyslexia. He suffers from extreme anxiety and has bouts of awful depression. He has no support. He was until about a 18 months ago under the care of the mental health team. I use the term care, to denote they were responsible for his care, rather than they provided any - they discharged him from their service, without consultation.( I have two other adult children, one grandchild and another on the way)

When he was about 13, and pre disability discrimination, he was a very intelligent child without a school place or home education - simply because he was diagnosed with ASD and our local Ed Authority said they had no place available. That was the start of a dark period for him and for me. I was forced to give up my career to become a full time carer, a child cannot be left at home alone, school kept on refusing him entry and sending him home in a taxi! I fought the Ed Authority, after two years they were forced to offer a school place and SEN support. This consisted of a boarding college a two hour drive away. He lasted about six months, it was too big a change, and support was not forthcoming. To cut a long story short, he became severely depressed to point of attempting suicide, and unable to leave his home. I tried and tried to get support for recovery but whilst officially he was allocated to AMHT they did nothing, even our GP made complaint after complaint. Nothing ever changed and I realised I had to educate myself and try my best to help my son. Over the years I have worked hard to support him and he has made progress. He still needs regular hands on practical support and has episodes of low mood due to his lack of purposeful daily living. We are now working together on building up his confidence so that he can go to college or gain some employment experience. So after a 10 year role as full time carer I was able to return to employment myself, not to my career, but to part-time work well below my qualifications and skill set. As you can tell, I'm a bit angry about that.

2 and 3. My in-laws
Dad - possible minor stroke last November, still waiting for a scan, aged 85. He's always been a challenging personality but we've had a decent relationship over the years. He has been main carer for my MIL, he is quite stubborn and has refused all but basic help from family. Things came to a head last November, my husband and I had great concern over dad's ability to continue to care for mum, and also concern for his well-being, as to us he was showing signs of burn-out and also possibly dementia. Mum was spending around 20 hours a day in bed, even eating her meals laid on her side, from a plate on the mattress. It was clear that things could not carry on as they were and if dad would not listen to reason we would have no choice but to contact SS and report the circumstances as an urgent safeguarding issue. Horrible situation. Then fate stepped into the mix, dad had a fall, we and GP believe it was possibly a stroke but this was not picked up by attending paramedic. At the time my husband and I were unaware of the incident, the paramedic felt that dad did not need to be taken to hospital, but he was unwell and unable to be responsible for MIL. So the guy called SS, who point blank refused to accept responsibility or offer crisis support, he then contacted the GP who said the same. So three hours later at the point of having to take both MIL and DIL to hospital as a safe place, DIL remembered he had family and we were called. We moved into their home for two weeks to provide 24 care- not by choice. SS refused to even come out to assess them, I rang SS every day for two weeks, each time I couldn't get past the call-centre type person I was speaking to, who would talk over me and repeatedly tell me they no longer offered crisis care and that was now the responsibility of the GP. Eventually I managed to speak to a human being and became part of the queue to obtain an assessment of need for them both.

Dad was bedridden for a few weeks, and refused all offers of support from the recovery team, but expected us to wait on him hand and foot. Without any assessment Mum was offered a ridiculously pitiful package of care - 20 mins three times a day. After much arguing this was in creased to x2 one hour visits and a 30min visit. She needs more care, but sadly, dad will not allow it to happen. As dad recovered, he wanted to stop mum's care and return to how things were before his fall - its been a constant battle with him since then. He is deteriorating cognitively, he is unpredictable and at times dangerous to himself and mum.

Mum- is very frail aged 83. She is totally dependent on others meeting all of her daily needs. Severe heart failure, stage 4/5 kidney failure, COPD, anemia, diverticulitis resulting in emergency op and stoma, vascular dementia, type 2 diabetes, incontinent, recently new bleeds from either her bottom or vagina - suspected cancer, but no assessment. She struggles to be mobile, can't independently transfer into bed or re-position herself so is high risk for pressure sores. A month or so before dad's fall mum was referred to our local hospice because her kidney function had dropped to stage 5. After dad's fall she received much better daily care (from us), and her kidney function improved and fluctuates at around stage 4. She has a very limited short-term memory, but if you provide essential information she can still make good choices in the moment, but five minutes later it's all forgotten. She no longer meets the hospice criteria for support because of her kidney function, although they haven't discharged her as her health is only going one way.

Trying to look after mum has become hellish. She wants and agrees to support from us, from carers and from her clinical team. Dad keeps on blocking her care because he doesnt want the invasion of carers, he wont support a move to a care home either. We feel totally let down by both SS and NHS.

SS and care. A crisis package was put in place last December, we had no choice of agency, we got what was provided. The care agency provide consistently poor quality of care, SS have actioned a Sec 42 safeguarding investigation, we have repeated asked for a change of agency. SS have not yet carried out a proper assessment of needs but instead have pushed and pushed for financial assessment and then threatened us each time we refused. I have asked repeatedly for CHC assesment, and the tick list has finally been carried out. I have found a care provider who will take mum, they are on the aproved list of providers, but I'm now fighting with SS to allow this swop to happen.

NHS care. Mum has input from a multidiciplinary team, mostly now not interested in providing care or even monitoring mums health and related needs. Her GP team are particulary poor. No one is monitoring mum's health or wellbeing.

For example, just over a month ago mum was really not well even by her standards, and then had a bleed onto her continence pad. (This was noticed by the carer, who told dad, who didnt think it important. The carer made a note on their electronic record system but took no further safeguarding action. Every few days I read through the electronic record, the only record of mum's care, and have to pay £2 a week for access! Anyway, by chance, I became aware of this bleed, three days after it occured.) The GP was called that day - Friday, and advised of the new bleed and that mum was not well generaly, we asked for a home visit. This was refused, instead my husband had to obtain a urine sample from mum and take it to the surgery. The GP treated mum with anti-biotics for a urine infection, even though we told them of bright red blood loss, not bloody urine.
Mum further worsened over the weekend and more bleeds, we had left mum and dad in the care of another family member as our own grandchild was unwell and needed our support some distance away. It soon became apparent that this stand-in family carer was quite useless, and it was left to dad to call 111 on Sunday evening, who received a muddled version of mum's health situation. Dad was asked to take mum to the duty Dr at A&E some four miles away. Which he agreed to do, on foot, at 8pm in a snowstorm, with mum hardly able to bear her own weight. Thankfully I was able to arrange for someone to call to see mum and dad just as they were attempting to leave their flat. They helped dad call 111 again, but was told that there was no call out Dr available, mum wasnt an emergency and that they should call their GP first thing Monday morning.
Monday, dad called the GP who came out to see mum, but dad forgot to mention again mum's bleed, but to be fair the GP should have read her notes. The GP called us after visiting mum. We asked about investigating the source of mum's bleeding, what bleeding was the reply from the Dr. We asked the GP to go back to assess mum, she refused and said a Dr would go see mum on Tuesday.
Tuesday, a nurse not a Dr attended. She examined mum but could not see an obvious mass. Mum was really quite unwell, she fell while the nurse was there. The nurse was very nice, said mum needed a referral to the cancer unit and would be seen within two weeks. We were advised to discuss the cancer assement process with mum as it would likely be invasive and unpleasant for such a frail person. The nurse felt that if cancer was diagnosed treatment would not be an option as mum was too frail and already terminal. We were assured by her that mum would now qualify for hospice care even if she decided she didnt want a hospital assessment. Another nurse was booked for Thursday to come see mum, we were to let that person know if mum wished to continue with her refereral.
Thursday. All change! This nurse said the oposite, no need for hospice care, GP team to provide symptom management at home as and when mum exhibits symptoms. The nurse expalined to mum the potential issues of having a cancer assessment, thankfully mum was able to pay attention and understood what was being discussed. Mum said again that she wanted to know what was causing her to bleed and that she also wanted to consider treatment if available. The nurse didn't agree and said she was stopping the referral as it was not in mum's best interests. We challanged the nurse but she refused to change her decision.
We further discussed needed equipment for mum, pressure cushions and hospital bed - these had been reccomended by mum's OT and district Nurse but dad had so far refused to allow these items into the home. The nurse agreed that they were needed, mum agreed that she would like them, however dad still refused to have them. We also discussed mum's increasing health care need, and putting in place a fouth daily care visit in the evening to ensure mum received her medication and to make sure she had a dry pad and empty stoma bag before bed. The nurse and dad had a very heated exchange resulting in her threatening to carry out a capacity test on them both. The nurse advised my husband and I to totally withdraw support and let dad care for mum, that if things got bad enough the system would kick in. She adjusted mum's medication to remove her evening meds that dad wasnt always administering, and others that might be adding to risk of falls. All done without informing mum or obtaing her consent. We asked the nurse to action a fast track CHC assessment which she initally agreed with then back tracked and said mum wouldn't qualify, which we of couse disputed. By this time the situation was quite out of control, dad was extremely angry, shouting and throwing things around. The nurse left. We couldnt leave until dad was calm and mum was safe. I went home and cried.
Almost three weeks later we've had no further input or support from the GP surgery. This is just one example, there are many more. There is no other family members willing to offer support to the inlaws.

4. I also now care for my husband, he had a breakdown around 3 weeks ago, and came close to being sectioned. He's been depressed for some time, the situation with his parens has I think been his tipping point. The psychiatrist has said he expects him to make full recovery within a year. He is taking medication which cause him to sleep a lot and gives him unpleasant side effects. Having been through years of supporting my son with his anxiety and depression, I am aware that I need to be careful to only support my husband's recovery and not facilitate his ongoing state. This is taking every last bit of my energy. I'm struggling to keep going to work, care for everyone and trying to keep my own head above water too. The worst thing is the isolation, my husband feels great shame about having depression and will not allow others to know of his illness. I have insisted on telling my children, they kind of knew anyway, after all they have seen the change in him. My husband's children do not live locally, and so they are not aware.

I'm feeling rather trapped and then guilty for feeling that way. I'm also rather angry a lot of the time. I know all of my feelings are normal given the situation. I also know I'm not super human and cannot possibly continue like this for much longer. But how do I get others to do their job - thats all I'm asking for really.
You've every right to be angry. This is an unsustainable situation.

Forgive me, I'm saying this without yet reading all the very detailed info you've (most usefuly!) provided, but whatever the detail is the principle is this:

- you CANNOT care for all of them
- the priority is your eldest son (our children ALWAYS take priority over our parents - it's our primary duty)
- the next priority is your husband
- your inlaws come last (whether they like that or not!)

When things become unsustainable, drastic decisions become necessary, or the whole family collapses.

Let's see what, collectively here amongst the forum members - who as a group have HUGE experience all told! - (plus the experts at Carers UK, ace for knowing the laws re caring/benefits/NHS etc etc), can come up with to help you break out of this crushing deadlock.
Grimly, that nurse (who seems to be the only useful person in the whole sorry mess you've encountered in SS and NHS!) is right - until you withdraw your support, your DIL will keep trying to blank the reality, and refuse the help that is blindingly obviously needed.

If there is some way your poor mum could 'die at home' that would be brilliant - my husband had hospice-at-home care for end stage. Not all hospices provide this however.

What will happen to your DIL when he is widowed? It sounds like he needs residential care as well.

I'm not in the least surprised your husband has had a breakdown, but the trouble is, this is not solving anything, is it?

How long do you think your MIL has left? Doctors tend not to tell us if we don't ask.....

I know it's awful, but when your MIL is no more, the situation will be less appalling (which it truly is now, sigh).

It is so, so sad (and that's only one of the adjectives, sigh) when the very elderly 'outlive their lives' so to speak, and last so long they are reduced to the state your inlaws are now stuck in.

PS - re 'treatment' for your MIL. No, she shouldn't have any, but it's easy to understand why she wants it (wouldn't we all??). Maybe the docs can dress up palliative care as 'treatment'. That might make her feel better?
Welcome to the forum, at one stage I had four elderly parents and a son with severe learning difficulties, all entitled to highest DLA care, one too stubborn to apply, but would definitely qualify. Sadly, soon after his father died, my husband died of a massive heart attack. I shall always believe that this heavy load of caring, for parents in total denial, was a major cause.

Reading through your post, it is clear that father in law is the biggest open sore in your lives. He has NO RIGHT to control mum's medication, whether or not she has carers, a special bed, or anything else. This needs to be addressed.

However, it is clear that the GP practice is useless so complain to the Care Quality Commission (just ring them up) and also to the local CCCG. The Clinical Care Commissioning Group of the NHS. Again, a phone call should get the ball rolling.
Social Services are also useless. Ring the Complaints Officer at HQ (maybe you can email them, look at the LA website and search for "Adult Social Care Complaints". Insist that dad, mum, you, and your husband are all given ADVOCATES, as required by the 2014 Care Act. There is clearly a conflict between the parents needs and wishes.
What's your GP like, and your husband's? Ask them to contact SSD too, to say you CANNOT currently care for your in laws.

Once they get the care they need (and I'd suggest mum needs emergency respite care in a nursing home at very least, but better still admission to hospital to get a thorough assessment and get her away from dad) you should be able to step back.

Does your husband have Power of Attorney? Do they own their home, or rent it? Between them do they have over £46,000 in savings?