Mum was discharged from the psychiatric unit back in January after spending several weeks being monitored and assessed by a team of specialist consultants and medical experts.
This team of experts informed my dad that they believed she would be able to live at home; for a while anyway, with support for my dad provided by social workers, the NHS psychiatric nursing team and other community support. They told him she was in the very small minority of patients who could be released back home, rather than being put into permanent care.That, they explained will inevitably come, but they were happy to comply with my dad’s wishes to try her at home for as long as possible.
Seven months ago.
She gets a visit in the mornings and in the evenings from someone from the council – a care worker, who helps her with her tablets and occasionally helps her get showered. They have a fifteen minute slot, but depending on which one you get you might be lucky to get ten minutes. One in particular this week spent at least ten minutes talking to me in the kitchen about her grandchildren in such a strong Scottish accent I struggled to know when to smile/laugh/look surprised etc. And having Scottish parents and grandparents and enough Scottish cousins to sink the Titanic, I pride myself on being able to translate even the strongest of accents for those who need help. Even my mum looked at me with a “crikey, this one can talk” look on her face. It was the first thing that has made me (almost) laugh so far this week.
Dad was supposed to also be getting support with access to a Day Centre in his local village. A few hours each week to give him respite and a few hours to himself. The paperwork was done months ago and we have been waiting for it all to be finalised and a funding decision made on how many hours she is eligible for. She has been for a couple of settling in sessions and played bingo and enjoyed helping the more elderly patients with their tea and cake, but despite chasing a number of times and being promised a decision and it all being sorted weeks and weeks ago, we are still no closer to this being in place.
Dad called the Day Centre yesterday to see if she could go up for a few hours this week. “We don’t have the paperwork through yet, so the insurance isn’t in place,” was the reply he got (or words to that effect anyway). So, he called Victor, his allocated social worker, who came and filled in the forms with Dad months ago. I am sometimes prone to exaggeration but this is not one of those times. It was months ago: Two or three months ago. Possibly even four.
Victor wasn’t there. His boss lady answered and told Dad that he would call him back later that day. He didn’t. She also told Dad that she was pretty sure it had all been sorted and that the paperwork should be at the Centre. It isn’t. We checked.
Dad called Victor again this morning and left a message asking him to call back.
Seven months it has taken to get this paperwork done and completed so that Dad can have a few hours respite a week. A bit of support to enable him to look after Mum at home for longer, saving the tax payer and the government money as he struggles to manage alone, day in, day out. And believe me, this is no bloody fun. Mum can’t hold a conversation, she sleeps for hours at a time, so exhausted is she by her brain trying so desperately hard all the time to make sense of the world – it floors her and she just needs rest. When she is not resting, she is wandering around the house, unsure of where she is, unhappy that she cannot make sense of any of it, desperate to leave. It is relentless.
And the paperwork is still not in place. These people who are paid to fill out forms, get them signed off and help my dad in his new and shitty, thankless, utterly exhausting role as carer are (in my humble opinion) failing. They are failing in their roles; they are failing my dad and in all likelihood, they are failing other families in need too. Every day.
It is not good enough.
I have laughed a few times though this week. You have to, I think. The first was the overly chatty care worker with the indecipherable accent. The second was yesterday: I was in the kitchen (probably washing up, I am constantly impressed by the amount of dirty dishes, cups, glasses, pans and cutlery my kids are able to create without touching a single one of them!) and I heard the doorbell ring. Before I could dry my hands and dash to the front door, Mum had beaten me to it and was chatting to a young man, who I believe was trying to sell her a kitchen. It was something to do with kitchens anyway. She sounded very interested, “Yes actually, we do need that,” was what I heard as I rounded the corner and found a salesman fighting to bite back a whoop of joy at his first big sale of the day. What to do? Do I let this go on? Do I risk embarrassing Mum by shutting the door in his face? I needn’t have worried: I stood behind her, shifting my weight (heavier than I’d like just now) from one foot to the other as I pondered how to deal with this situation, when she started telling him he lived next door.
“Me?” he answered. “No, no’ me. I dinny live here, no”
“You live here don’t you?” she persevered. “I’ve seen you.”
I could see his face change from delight at thinking he was about to secure his biggest sale of the year to confusion. In that moment, I almost did a terrible thing. As I stood behind my lovely mother, I almost indicated to him, with a circling finger at my temples that she was a ‘crazy lady’; somebody with a screw loose. I felt about 8 years old as I forced my hand to not rise to my head and stopped myself from doing a weird ‘crazy’ dance to show him how utterly bonkers she is.
Instead, I mumbled quietly that “she is not very well,” and he thanked us for our time and left.
I then made Mum some scrambled eggs for lunch. “How was your lunch, Mum?” I asked her.
“Okay,” she replied, turning her nose up slightly in disgust. “Just okay,” with an emphasis on the ‘just’.
I laughed, to myself of course. You have to, it’s the only thing left.
And through all of this, over several days, Victor still hasn’t called back.
Where are you Victor? Do you really appreciate how important your role is? Are you aware of the impact of your inaction on peoples’ lives? Are you sure? Do you fancy changing places for a day? No? Just a few hours then? Go on, it’ll be good for you, a learning experience.
Seven months, Victor! Seven months since referral. Do you think that’s good enough, Victor?
But he can’t hear me. He never answers his phone!