"No we don't need any help" changed to "oh fucking hell I am so tired can someone please take my son and care for him while I down a bottle of wine and pass out from tiredness".
When we began our journey with Nate over 6 years ago I couldn't have envisioned any possible situation where my son stayed out of the house to give us "a break", or that I would have strangers in our home caring for my son overnight ( not that they are strangers anymore). Part of this attitude was a direct result of his anticipated short life. We wanted to be with him as much as possible, he is our son after all. During Nate's stay in SCBU we took over all of his "cares", adopting the attitude of self reliance which was to continue at home.
Fast forward a year or so of sleep deprivation and hospital stays and suddenly we were thinking of allowing someone else to take on some of our caring role. This decision can be a huge mental challenge. It involves trust in an as yet unknown quantity and a little bit of bravery. While liberating you to parent/ cook/clean/sleep/drink gin you kind of have to accept they will never do things quite like you would, or quite as well as you would. This is ok, as long as it's close. We have super high standards after all. That's not to say we should compromise our standards and accept sub level unsatisfactory care. Often as parent carers we are made to feel "grateful" by service providers and professionals for the care packages we have. I mean yes, clearly I'm feeling really fucking grateful I need help in looking after my son. Cheers.
What i do "get" now is that what works well for one family who have a child or young person with a particular need won't necessarily work for another family with the same additional need. For example not everyone likes the idea of having carers in the home. Me, personally, I sleep like a log. Other parents use family members or friends and would never ever consider carers in the home or respite provision. Some things just aren't a good "fit". All of the available options need to be explained for parents to make informed decisions.
Family dynamics are complicated, and mental health and coping capabilities play a large part too. Combine this with varied levels of education, experience and energy levels ( energy to rant and harass by phone or email), and also education, experience and energy levels of the professionals representing them what two families with similar young people come out with could look vastly different. Best case scenario is that this differing end product is the result of careful assessment based purely on need and not who has shouted loudest.
Any given care package seems to depend on 3 things ( in my opinion) :
- what you think you would like ( i.e. what you are aware is available)
- your eligibility ( how many top secret boxes you tick)
- what funds are available
Actually getting a care package put in place involves detailed assessment(s) and basically your life "going to panel". Panel suggests a team of people pouring over the intimate details of your family life ( I think this is what is supposed to happen), but is often, in fact, someone sitting drinking coffee with a pile of paperwork at their feet. Or an evil genius stroking a white cat. I like to picture that version. In some areas there are separate social care and health panels due to pots of money ( anytime pots are mentioned I always imagine a gold pot like at the end of a rainbow, no idea why), but ours now has a joint panel ( I now have an image of two cats in a gold pot on my head, and they're fighting). In the last few weeks I've had two detailed conversations with health and then social care about Nate's health needs and why we are asking for more help. Every little change seems to require another in depth look at "How Shit Nate's Heath Has Been" or HSNHHB assessment. Catchy I think.
I've rambled slightly but what I think I'm trying to say is that there aren't really many options for care ( and some are kept top secret), and that it can be tricky to access, especially as our children become young adults. Care in the family home with hospice short breaks or residential short breaks if you qualify, building extensions, living in their own home or in a residential care setting are pretty much the standard choices, and all of which depend on what funding is available. None of which are easy options for the young person or their family. This isn't something I think a great deal about for obvious reasons, although you never know. We have all seen articles in the press regarding independent vs residential living, inclusion vs the appearance of institutionalisation. Some headlines are about home scandals or where choice has been removed due to lack of funding. What must be remembered, however, before anyone turns into judgey mcjudgerson ( which seems to be the trend when talking about what we don't totally understand) is that residential care can be very different from what you are already imagining, as is hospice respite ( clue it's not depressing or all about death) and that above all whatever care is put in place it must be right for the young person.
What works for one young person and their family doesn't work for all.
They must be safe and happy, and their families must be satisfied they are safe and happy, regardless of who provides the care.
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