I've generally become used to a lower standard of living over the last 7 years. Financially, socially and domestically. Financially we had to curtail our spending once we realised that aMyMan's 'temporary period' of sick leave was stretching ahead with no end in sight. When self employed 'Sick Leave' isn't taken lightly. It can lead to an impression of unreliability. A self employed consultant is only as good as his reputation for delivering as per contract. MyMan took short term sick leave hoping that his health problems would improve with a period of rest. Once we realised it wouldn't we had to revise our plans and start living off hard earned capital. The Savings hoarded for our retirement. A small level of income from Incapacity Benefit along with the Mobility component of Disability Living Allowance
[DLA] helped to pay for the essential extras such as his regular massage and chiropractic treatments.
Money was enough to pay for domestic essentials, the necessities of life. Clothes were serviceable rather than fashionable. Unable to take a holiday or meals out due to his disability meant we didn't miss not having the money to enjoy such luxuries. All manner of other economies were practiced for 7 years. Unable to work myself due to caring for MyMan any spare cash I had paid for voluntary NI contributions towards my state pension.
I knew from my previous professional experience in Social Services that MyMan should ask for a re-assessment of his DLA benefit. But he was reluctant. As he is not in a wheelchair he doesn't consider himself disabled. Disabled people in wheelchairs are able to do far more than he does and have a better quality of life. But there was no persuading him even when I told him it would help my finances if I was recognised by DWP as his carer. In the end with my savings whittling away I applied to my employer for a pension forecast and asked if it would be possible to be considered for early retirment on compassionate grounds. I was lucky, this was agreed about a year ago. I am so grateful as the regular small income removed some financial pressure.
Then last year MyMan's Community Psychiatric Nurse [CPN] asked him why didn't he receive the higher rate of DLA on Personal Care along with the Mobility component. At last MyMan agreed to apply for a re-assessment. The CPN and I completed the form on his behalf. A mammoth task in itself. Several weeks later the DWP advised us that on consideration an increase of benefit was turned down.
MyMan doesn't have the energy for day to day living. Anything else is far too much effort. He would have accepted the decision. But I felt that to have done so was to give in too easily. I wrote to ask for the reasons for their decision. I thought we should appeal against the decision. It was another chore I didn't need. Another stressor to contend with. MyMan said he had no intention of going to appeal - it would be something he just couldn't cope with. He was too tired and couldn't go through 'yet another medical examination'. He is fed up with hospitals and tests etc. I thought we should go through the appeal process , if he had to undergo another medical we could request that it be conducted at home to save him travelling. In the event we didn't need to; a letter arrived a few weeks later. After gathering evidence from his doctors, his chiropractor and CPN, he has been granted the maximum level of DLA.
I then applied for Carer's Allowance which went through very quickly. This extra amount of cash has relieved yet more of the worry about our finances. But by this time next year I won't be receiving it as I'll be entitled to claim my State pension. I'm not sure whether one is still paid a Carer's Allowance if decide to opt for a deferred payment of the State Pension. I'll have to seek advice.
I understand how MyMan feels about being labelled 'disabled' [although I prefer to think of it as 'less able'] I also have a problem thinking of myself as a 'Carer'. But that is what I am now - more than just a wife. The caring aspect is very demanding and emotionally draining, taking up much of my time. I no longer have time or energy to spend on the things I used to do. Domestically Standards have slipped. Little jobs that need doing around the house get left. It depresses me as my values are now lower. Caring is energy sapping beyond belief. When I have some time to myself I have to weigh up which is my highest need at that time. Sometimes it is to generally to clear de clutter out of the way, often to potter in the garden, many times to go out and seek some social interaction, light releif, and lately to study what I am learning at my weekly Bridge lessons.
A morning out of my week to take bridge lessons reduced the amount of time available for chores, something else had to give way. This year it has been the gardening. I am relying on the weekly 2 hours paid gardening help to just keep the garden ticking over. Plans for changes or new plantings have been postponed for another year.
When friends visit I know they probably wonder what I do with my time. I am still protective of MyMan's feelings so I don't explain. He needs so much in the way of prompting ' take pills, eat, shower, shave' etc. I don't think they realise that all he does each week is to clear the recycling and rubbish out ready for collection. Over the year he takes care of financial decisions on savings, investments and filling out tax returns. He struggles to manage these jobs but if he stops then what else will he have to boost his self esteem. I have to help by form filling or writing letters on his behalf. As his energy or pain levels are so variable I have to be ready to help
at the drop of a hat when he wants to write a letter. When he does feel energetic he wants to get on with a task straight away as he never knows when he'll have another brief burst of energy.
Getting out of the house for exercise is confined to his 15 minute walk to buy a daily paper 4 days out of 7. The short walk home up the steep hill drains him. I save one day a week when I try take him out in the car. We can manage 2 hours out on a good day. So I look for a 15 minute journey - an hour there, a coffee break and a 15 minute trip home again. He usually needs to take a good rest on the bed to recover from such an outing. It doesn't always work to plan. I sometimes have to juggle plans. When he's not well enough to go we postpone to another day. If he doesn't get out in the car at least once a week then I worry that he'll become a homely version of institutionalised and
agoraphobic.
Today we went to Homebase at Honiton to buy some plastic patio plant pots. We have 3 roses which need planting into patio pots. MyMan loves roses and said he wanted more. 'I'll take care of them' he said. Just as he said over the last 2 roses which he loves but hasn't weeded or pruned in the 5 years we've had them. But he is so rarely enthusiastic that I couldn't bear to demand a promise that he would take care of them. I'm hoping that he'll pot them on while I vacuum through tomorrow or when I'm at Bridge lesson next week.
What I haven't yet decided is - if he is too tired or feels too ill to deal with them do I get on and plant them on [I hate handling rose bushes - ouch!] or do I let them die and wither through neglect. I'm not sure which of these outomes will distress him the most.
