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I need a Plan B

Good morning. It’s been pointed out to me that I need a Plan B. I am not able to live independently, my husband is my sole carer and we have coped so far without outside interference. I do pay for help around our home. We’re both retired, but my husband is a lot older than me, hence the need for a Plan B. We both have occupational pensions, my husband also has his old age pension. We also have a mortgage and have had to spend thousands of pounds adapting our bungalow for me. We have no savings left. We also have a car loan, we need a reliable car big enough to take the wheelchair. I did have DLA top rate for mobility, middle rate for help with personal care indefinitely. Two years ago I was granted PIP enhanced rate for both for three years, but have recently had the forms to be re-assessed. I have PPMS so surely they aren’t going to take it off me, but you never know.

We have no family to speak of. Nearest relatives being cousins who we have no contact with. Our solicitor has Power of Attorney should the need arise.

Recently my husband was taken ill, and was unable to drive for seven weeks. He still managed to care for me. Friends were very helpful with shopping, prescriptions, appointments etc but I didn’t go out at all for four weeks. It became apparent that if he’d been admitted to hospital I had no Plan B. I feel there is a limit to what you can ask or expect of friends.

Having established that we’re not poor I will have to pay for whatever help I might need and need to work out what I can afford, but I don’t know where to begin, care agencies charge a lot but then only pay the minimum wage and charge travelling time. The alternative is advertising, interviewing etc which will take time. Neither can be put in place until the need arises, and if that need should arise suddenly how would I get help quickly?

Hi Flowerpot,

Just a thought but have you tried Internet shopping - home delivery of food and internet ordering of repeat prescriptions, home delivery? Waitrose for food would bring the bags inside the home to the kitchen, which was helpful.

Age Concern/ Age UK can assist with home help, including handyperson and gardening schemes. I know you mention you already have help around the home.

Sorry to hear your husband was unwell.

A few things that have helped in our family over the years:

Internet shopping for groceries (an absolute must - I haven’t been in a supermarket for years!). Get them to deliver when your home help is there and he/she can do the putting away.

Finding a local pharmacy that talks to your GP surgery and arranges/delivers repeat prescriptions.

Getting a list of local care agencies that are approved by (better still, used by) your Local Authority and finding one you like, and that is one that is big enough always to be able to manage to send someone. My experience is that these companies can be very professional and sensible - once they know you and your needs and you have met them and are on their books - even when you aren’t actually using them at the time - they can swing into action from a standing start very quickly indeed in an emergency. They will probably be keen for you to have a key-safe - see below - they generally do not like to hold keys themselves.

Getting a key-safe installed outside the front door. Invaluable if you are both unable to get to the door. If the GP and the district nurse and the pharmacy and the care company have the code, they can use it to open the key safe and reveal your front door key and then lock it away again when they go.

Wiltshire Farm Foods. They deliver frozen meals (they will have a delivery day in your area, with luck) that can be put straight in the microwave from the freezer by you or a carer and that are complete meals, vegetables and all. Their drivers are CRB-checked and so you can safely give them your key-safe code and their driver will let him/herself in and pack the weekly delivery into the freezer for you.

Good for you, planning ahead. I do think that, when one has a chronic condition, no minute of forward-planning is ever wasted.

Alison

And for reading, the library may bring books, they do here, they bring them round in a bus.

There are also volunteer drivers which you just pay for petrol per mileage. Advertised through local agencies, the council etc. A visit if possible to the local citizens advice bureau might be good, I came home over a year ago with a bag of booklets and leaflets and phone numbers of people I might need at some point. I phoned them all to see how they all worked and to get in the system early doors. The booklets listed all gardening, transport, free, disabled, blind and deaf, assistance, grant services.

Hi Flower, I`m sorry you have to think like this and I know exactly how you feel. I dont exactly have a PLan B, but I do have an emergency plan documented by the Carers Project.

I think you need to get a social services assessment for your care needs ASAP. They do have a long waiting list as a rule, but if you ring them and explain about your husband being older and not in the best of health, I would hope they can come out to see you ASAP!

I have 26 hours care, plus 2 sleepovers a week, which I pay for with Direct Payments. Plus I get a respite allowance.

The rest of the time, it is down to my hubby to care for me. I need a lot of help, being a full time wheelchair user, hoist user, with continence problems, cant do a thing in the kitchen, cos I cause more trouble than it`s worth!

You`re going to have to do a lot of research/googling what local free help is available.

The council may have a Handy Man scheme in your area, who charges a small amount for some jobs. My elderly neighbour uses them, and their gardening service. But money is dwindling in the big pot for them,. So services may not be available much longer.

Like you, we have spent a fortune adapting our house, buying equipment and vehicles to suit my progressive needs.

I am means tested for everything and do ok, but when the mortgage is paid in 3 years, I`ll have to pay towards costs and worry that we wont be able to afford it.

Is there anything else I can tell you about?

pollsx

Pollsx

Thanks everyone. Good advice as always. I have a friend who used to be a Social Worker specialising in palliative care, she’s now retired but she’s going to come and help me formulate a plan for if/when the need arises. My husband was in hospital five years ago, and I managed then with help from friends with lifts for visiting. I shopped online and my cleaner made sure I had a hot meal each day - bless her. I’m rather worse than I was then. At least I could shower unaided then, but not now. Eve xx

Bless you Eve.

I wish I had your courage.

I often get a bit flappy about my situation but your attitude is an inspiration.

Steve.