We meet with social services. The CC (Care Co-ordinator) had kept in contact so knows the Goldfish and his condition pretty well. She has recommended the highest amount of personal care available. It’s up to us how to spend it – as long as it came under the heading of personal care. There is no money for respite or for someone to take the Goldfish on an outing – over 65s apparently don’t need social outings. It’s age discrimination. If I had the energy I’d be wanting to campaign about this.
We’re delighted as we now have funds to buy in a lot more support. However, first we have to jump through some hoops, have meeting after meeting and we still don’t have extra help. First, we meet with the person from the local authority to learn how to fill in accounting forms. We could use the money to employ the Goldfish’s own personal assistants. If all this was happening a few years ago it would be worth considering and I’ve heard from others how life-changing it is to no longer have to depend on agency staff. However, the thought of advertising, interviewing and finding the right people and doing all the payroll and holiday pay was more than any of us could cope with.
The money from the local authority must go into a separate account. I meet with someone at the Goldfish’s bank. A great deal of form filling and time goes into this. I want a cheque book. She offers a debit card. It finally gets done, after I have politely refused to let the bank invest what little money the Goldfish has in something or other which will make more money than the interest does – though they can’t guarantee it will. I give the new account number to the local authority and suddenly several thousand pounds are deposited.
My joy was brief. It didn’t take long to learn that, although there are many care agencies in the area, they are not able to provide the care we needed. They advertise services, always stressing the ‘service-user-led’ aspect, which include sleepovers, waking nights – but they don’t actually have the staff available. I start to wonder if we’ll ever get to spend it!
The agency we already used for the morning shower and dressing can’t, unfortunately, provide a support worker to come in for the chunks of time we want. I spend hours on the phone ringing round. Two care agencies say they can help but we need to have more meetings to fill in more forms.
The boss of one agency comes to meet me and the Goldfish – who smiles sweetly at her and immediately falls asleep. We go through the forms. She explains they like to know as much as possible about the client so they can match support worker and client. The organisation wants to meet the needs of the client, puts the client’s wishes first, blah, blah, blah. She will let me know but warns they don’t have a big team and she’s not sure exactly when they will have someone for the Goldfish. She leaves to pack for her holiday, somewhere hot and sunny for the next two weeks. Finally, several weeks down the line we are told we can have someone on a Tuesday from 12 noon to 4pm. I recognise it as a ‘take it or leave it’ offer – I take it.
The second care organisation still hasn’t got back to me. By chance I meet someone whose husband used to attend the same day care as the Goldfish until he became too poorly. During our chat she mentions she employs someone from Alzheimer Scotland to come in on the day her husband would have been at day care. I know the woman and approach her directly to see if she would be interested and had any free days. She can do five hours – FIVE HOURS – on a Wednesday. I immediately get in touch with Alzheimer Scotland and we make the arrangements.
It has taken two months but now we have someone in on a Tuesday for four hours plus someone on a Wednesday for five hours, two days at day care from about 10.30 (depending on how quickly we can get the Goldfish ready) to 3pm and someone in for 45 minutes each morning for his shower. It’s not enough and no one can do nights but it feels like we’re finally making progress.