My Dad Is A Goldfish – help at hand?

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.

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11 thoughts on “My Dad Is A Goldfish – help at hand?

  1. Mary, regarding some of the above, I think your Dad had the right idea when he fell asleep! Matching carers to the client???? In their dreams! Will be interested to see how the story continues…….. and as for all the form filling—–isn’t it a complete nonsense? Not to mention outings for the over 65s. If you’d had the energy for a campaign, I’d have been right there beside you!!!

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    • Hello Janette. Yes, dad wasn’t fooled by any of it! Every agency makes a big thing of matching carer to client or support worker to service user or whatever terminology they happen to use but it all comes down to how many staff they have and the amount of time available. And just wait until I get started on health and safety issues – theirs, not ours.
      On the issue of no social outings for over 65s I actually think it is illegal to discriminate in this way on the grounds of age. Maybe I’ll get round to doing something, or at least finding out if I’m correct in the illegality of age discrimination.

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    • Ruth, trying to find someone to come in at night was much worse. However, we were really so lucky with the Alzheimer Scotland person – she was brilliant, dad liked her and I was relaxed leavig the two of them together. I do wonder, though, how it must be for people who don’t have any family to speak up on their behalf.

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  2. Mary, I’m glad that your dad liked the carer from Alzheimer Scotland, at least that was a blessing for you and your sister and gave you a wee bit of respite. It’s just a pity you couldn’t have got someone to do a sleepover and have given you a complete break. I don’t mean to sound callous, but that would have helped immensely. I wish I had known about Alzheimer Scotland, it broke my heart when no one but me would take mum from the hospital, and when that didn’t work out due to my illness, it was devastating to have to put her into a home. The worst day of my life……
    Mums care worker never mentioned it, she seemed determined that a home was the best place, and mum still hates being in a home even though she doesn’t know why she’s there.

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    • Ruth, one of the difficult things is finding out about what help is available and how to access it. One problem is that social services aren’t allowed to recommend a particular agency and peole are left floundering about wondering which organisation is good. Luckily, living in a small town, it’s a bit easier to know whch ones are good – and which are best avoided.
      Say hello to your mum from me – even if she doesn’t remember who I am. I remember her fondly.

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  3. Hi Mary, so glad to see you writing again about your Goldfish. I’ve been missing from my blog and reading my Reader with the blogs I follow. My husband and I are into our 3rd month of relocating to take care of his 91 year old mother who also has dementia. She’s in a later stage than your dad was. In someways it makes it easier to care for her because she does not wander now, but each day is unpredictable and I’m learning fast what to do and what not to do. It can be very physical, too. My husband is worried about me when he has to work outside. We’re both freelancers, he’s a musician and I’m a designer. We’re facing the same hardships of keeping up our work to do this full-time care. We are paid minimum wage as live-in Personal Assistants. America is finally realizing it’s cheaper to keep people in their home than in a nursing home and will now pay the family to take care of a family member. If we didn’t have this in place, it would be almost impossible to make this work for my husband and me.

    My situation is not dealing with a Step-Monster as you did, but I’m more like Cinderella with two evil sister-in-laws as I am the only female in the family willing to care for their mother. They refuse to care for her. I could write a whole blog about that, but I won’t. I’m glad you put it out, though, about the inner family struggles when it’s time to care for one in need.

    By the way, I visit my neighbor, Miss D twice a month now when we get a weekend off and get back to our city apartment. She’s doing well and has the care at home all set up with the same 2 girls. We love seeing each other, a very special bond we share now from our experience together.

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    • Good to hear from you, Nancy and I’m pleased to catch up with what you are doing. Oh, goodness, I know how difficult it is to keep up a freelance career while caring for someone. It’s not only the time spent with the person which prevents other work getting done, it’s the emotional/mental exhaustion on top.
      The government here is always talking about how it is better for people to be cared for in their own home but they don’t do much to suport the family members who do the caring. If the full time carer is earning £50 (about $75 I think) or more a week they are not entitled to claim any kind of carer’s allowance. If they earn less than that they can claim about £60 a week. To live on!
      I’m sorry there are family complications with the evil sisters-in-law. We should introduce them to the step-monster! Send them off to live on a desert island.
      On the other hand, I’m delighted to hear Miss D is doing well and you are still able to meet her regularly.
      Thinking of you and wishing you all the best.

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