I am currently caring for my terminally ill husband who has cancer and also for my two very young children who both have Adhd and autism. I am lucky if I can brush my teeth 3 times a week or even get in the shower once a week! I am constantly exhausted and suffering from fatigue. I don’t get ANY me time except when I’m asleep and even then I’m in demand from my children who both wake in the night. I regularly suffer from styes, cold sores and other signs that I am very run down yet I have no help or support. Can anyone please tell me what services are available to help carry the strain?
Firstly, your husband should be receiving CHC funding and this should be funding his care either at home or in a hospice or nursing home. Is this the case?
Re the children how are old they? Are they attending any early years settings/ school? Have their needs be assessed by social care? They may be entitled to some form of day or overnight respite to give you a break.
What is CHC please? My husband is looked after at home currently. My little boy is 7 and my little girl turned 5 on Monday there! She has a deferred placement at nursery. We just moved house four weeks ago, over one hundred miles! Our little boy is struggling with the transition and so far is only attending school in the mornings as he is finding it difficult to settle. I don’t know how to access social care. I previously sought respite before we moved but everything was shut down due to covid so still no further forward. I have tried contacting the carers centre but so far I have had nothing back…I contacted them again this morning!
Why did you move? Did your old authority tell the new authority about your family’s care needs?
The new one has to provide the same level of care until new assessments are completed.
Have you signed up with a new doctor?
We moved to be close to our older son and granddaughter. I’m not sure we have been passed across to anyone! I registered us with the doctors four weeks ago but they told me our old doctors still hadn’t released our records. The new doctors have no idea what is going on. My husband received an appointment for his new oncologist the other day so I’m hoping that finally our records are in!
I feel like I’m chasing my tail just now! On Friday I tried calling SW and asking them to do assessments. I am still waiting on it being passed on to someone and them returning the call. I think I may chase that up again tomorrow!!
Is your son’s school aware of your situation? There are systems in place to support families and the school can ensure other professionals eg social care are made aware and/ or involved in supporting your son by supporting you as a family. The school SENDCO should be able to help or the DSL in school.
I work in a children’s mental health service so will post some resources/websites that are quite useful.
With regards to social care your husband should have had a social care assessment and you has his cater should have a carers assessment. If you request that this is done urgently then they may fast track your assessment. If they drag their feet then please get in touch with your councillor who surprisingly helped me immensely
MacMillan have an amazing amount of resources and support. Give them a call and they can advise on support with child care costs etc. they can also help with supporting you to prepare your children for what is happening with your husband.
Has your child been diagnosed with ASD? Does he have an education healthcare plan? This is led by the school who will assess his needs. Also this should feed into a social care assessment for him with the possibility of having a respite worker, which depending on your level of needs/wants etc can be a support worker for a few hours a week to overnight respite.