Thursday, 22 May 2008
Ms Chiropractor told him he should look at an adjustable bed that will sit him up, raise his legs when needed and do everything but turn him out of bed. An adjustable bed. We had a peek in the Bed Centre in Honiton yesterday. It looks as if we'd need a mortgage to buy one. He was too stiff to try out adjustable beds - an ideal time to 'try before you buy', I would have thought. I didn't press it. Westpoint has a Disability Exhibition on at the beginning of June - I think that could be a good place to start looking.
I suggested an automatic adjustable bed last year but he refused - 'it's not necessary'. This is yet another example of his dismissing my suggestions. But as soon as one of his professional carers suggest it may be a good idea then he is keen to get on and do it.
Wednesday, 21 May 2008
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.
Sunday, 11 May 2008
MyMan has been poorly, irritable with life, events and me. I haven't been able to devote much attention to his emotional health needs. I have felt a bit stretched. Over the last few weeks a member of MyMan's family, in Surrey, and also local friends have had health problems. In fact at the moment I don't think I know anyone who is healthy and problem free.
Along with their inevitable hospital appointments/visits for tests, examinations, biopsies, prognsois and plans for treatments and minor surgery; all have entail long phone calls of [what I hope are] empathic support. Or hours taken up assisting with car trips from base to hospital and hospital to base; help with shopping expeditions while they are unable to drive while recovering from surgery. I haven't been doing this alone. Friends have set up an informal rota to assist where and when needed. But along with bridge lessons and the need to try and practice what I learn each week I have been rather stretched and thus unable to post a blog regularly.
The housework has taken on an even lower priority. Dust so thick I would need to shovel it out if anyone came to visit.
Which is why I can't for the life of me understand why I invited friends to join us for lunch today! It seemed a good idea on Friday when I put out the invite. This then involved yet another trip to Waitrose on my way home. I planned a traditional roast as I thought the forecast for Sunday was 'chilly and wet'. How wrong can the Met Office be? Or did I not listen properly. Maybe it was last weekend's forecast I had in mind! As I said, time flies by. Whatever, I've laboured over a roast on the hottest day of the summer, so far.
I still felt very stiff yesterday. I couldn't do all I wanted to as I was moving more slowly than usual. My time was spent outdoors sorting out pot plants, new plant acquisitions and containers. I didn't shovel dust anywhere. I had to scoot around a bit this morning. Everywhere received a lick and a promise. With the French doors and windows flung wide open to catch the cooling breezes, there is every possibility my friends thought the dust had just blown in over the last few hours.
Now being a glutton for punishment I have invited another couple over for supper on Friday. This time I will clean and tidy properly on Thursday. I will remove the bags of compost and empty plant containers from the patio chairs and table so that we are able to drink our aperitif outdoors. I will prepare a simple onepot dish and have salad. In which case it will probably be chilly and wet. I will inform the Met Office so they can put out an accurate forecast.
Saturday, 10 May 2008
After bridge lesson on Wednesday I'd called in to Waitrose on my way home. It's a bit of a hike to get all the groceries up to the house. Usually MyMan plays his part by opening the front door for me. This day he didn't so I set the 4 heavy bags down on the front step and fished in my pocket for the house key. As the door opened I picked up the 2 bags to my left and then stepped over the bags in front of me. The leading foot had just connected with the ground when I realised my right foot was in the clasp of a clinging plastic handle. Still clutching my full bags of groceries I felt like an unbalanced Statue of Justice teetering and staggering down the entrance hall trying to shake my trapped foot free. I saved myself from hitting the deck. But all my back muscles from shoulder to bottom, thighs to calves, all had a generously vigorous workout. I'm still suffering the effects 3 days later.
We've had a busy 3 weeks. It's meant increased stress. Along with the effects of hay fever, it means I am even more accident prone than usual. If you are in East Devon and see a silver Jazz heading in your direction - I'd steer clear - just to be on the safe side.
Thursday, 1 May 2008
We are still married, it has been a close call a few times over the last few weeks. But now I am taking more 'time out' for myself. It helps. The house gets dustier and more grimy - I can't do everything. There are only 24 hours in a day, something had to get placed on the back burner and cleaning has never been my favourite chore. But my mental well being needed a fillip. Or a Philip might be even better!
- I am now in the middle of my 3rd week studying and trying to get to grips with playing Bridge. I always enjoy new experiences, new challenges and learning.
- I've been to Exeter City twice to browse the shops. I'm a little out of practice and need to build up my shopping stamina - 2 hours was more than enough. I'll take a more leisurely view next time. Have a coffee, visit the Cathedral. My trip to Exeter on Tuesday coincided with torrential rain and flooded streets. I had to paddle. Was drenched to the skin and returned home faster than I anticipated and empty handed - apart from a new umbrella.
- A friend is due to visit in July and my plans for a weekend away in Gloucestershire in the autumn, meeting up with old friends and neighbours are progressing well.