Friday, 21 September 2012
Sat down with a cuppa and read a couple of blogs. Feeling guilty again as so many things here sound familiar. I think MyMan may have vascular dementia. The Eye Consultant told us he has some areas of ischaemia showing on his MRI scan. We'll know more when we attend Neurology clinic again in November
When we initially attended the Neurology appointment MyMan wanted me to be there only in the capacity of note taker. He was in an independent mood. It was a very unsatisfactory appointment as I was wrong footed from the word go. MyMan failed to say who I was as I trailed in after him or to ask if it would be allright for me to accompany him. I knew then he was 'struggling' before he'd even started. The consultant ignored me and asked him "who's this?" reply "my wife"; no explanation of carer role or the need to listen in due to his appalling short term memory.
The consultant appeared to have made up his mind before he even asked MM any questions on his symptoms. Neurologist is convinced that he has clusters of different types of migraine (many without headaches) one after the other. All leading to the light sensitivity, sight problems, sound over-sensitivity, smell/taste problems and poor sense of balance. I did ask, as we'd agreed on this beforehand, whether any of his symptoms could be due to a form of dementia. The consultant was abrupt to the point of rudeness when he said not and I felt quite cowed for asking.
So cowed in fact that I failed to mention the other baffling symptoms that worry me.
In the end he recommended that MM increase Pregabalin to a much higher dose to reduce pain, improve sleep and hopefully halt the continuous cycle of migraines.
As it is we are now almost a year on and rather than any sign of improvement he is worse. We are due to go to see the family doctor again But this time we will go with armed with a long list of the symptoms he has and ask the Dr whether the neurologist would still consider everything be due to migraines.
Friday, 27 July 2012
Just a short postcard from my new home. I think I will be quite happy here once this heat wave is over and I can venture outside to explore. As it is all the windows are locked on trickle. Phew!! I've examined all windows intently but however thin I am there's no way I can squeeze thro any of the gaps.
Meanwhile I keep the 'hoteliers' on their toes by finding new hiding places. The top of the tall bookcase was the best. I knew they wouldn't find me for AGES because of the amount of dust up there!
The beds are comfortable (I have 3 favourite easy chairs, a cardboard box and a computer chair). The food is really good - I am enjoying 3 meals a day. I hinted that I would like some veges by chewing a very healthy houseplant. I've stopped doing that now there a few peas mixed in with my lunch.
When it's not too hot I enjoy a few cuddles with each of them - in turns. We usually get together before breakfast, after lunch and in the evening. But I take several siestas; I take my longest daytime nap (3hrs)in the bottom of the airing cupboard - where it's dark and private.
The view from my favourite chair (it used to be HIS chair) is of gulls, rooks, pigeons, squirrels and a very large black cat. I hurl challenges to them all through the glass telling them I'll be after them as soon as my new catdoor has been fitted. Until then I try to keep fit by running 100m sprints 2 or 3 times a day, leap a high jump and hurdle obstacles. They have a sense of humour because I hear them laughing when I'm putting myself through my paces.
I think they have strict rules here. I made a faux pas on my first day; I jumped up on a kitchen worktop. He 'snitched' on me. She then hissed at me "Ssssssstop" so I jumped down. I've not been up there since. I KNOW when I'm being told off. We are used to each other now and haven't been told to "Ssssssstop" for ages. As I said, I think I will be happy here.
Love to all from
Tuesday, 23 August 2011
February 9th On checking this link I now find the web site On http://carerwatch.wordpress.com/ is fully active
Tuesday, 28 June 2011
Friday, 27 May 2011
MyMan has been no better. Pain and depression as bad as ever. Occasional glimpses of the Man he used to be pop to the fore but rarely last long. On my birthday in February all my family were flying from all corners of the world to converge on Sri Lanka for a wedding. I was stressed and anxious at having all my precious eggs in one basket. In the event they all returned safely. To provide a distraction at this time I booked a First Class train seat to East Croydon and a B&B at the Selsdon Park Hotel for along weekend in April.
I met with Kay who came down from east Anglia for a night. You may remember that Kay and I had a disastrous trip in 2008 Rather than terminate the friendship I continued to keep in touch but am now much less inclined to consider her feelings above my own. We are not as close but still able to enjoy each others company.
The main difference is that pre 2008 to give her pleasure I would have strained every sinew to visit and stay with her. I find it stressful leaving MyMan. Would prefer to spend time away from home with my family rather than friends. But I would have made the effort. A 6 hour journey is no easy undertaking under the best of circumstances. So I am unlikely ever to make the effort to visit her again.
Over the last 2 years she has invited herself down to visit us. And rather than pay for her to stay at a nearby B&B I now leave her to sort out her own accommodation. I have forgiven but not forgotten. I am hardened.
During a phone chat Kay mentioned that we hadn't seen each other in 2010. I'd not been aware of the lack. She was trying to sort out if we could arrange a visit. I suggested that as I was on a visit to family while booked in at an hotel. Would she be interested see if it could a suitable venue for a half way meeting place. she did and we both arrived on the Friday afternoon. It was successful 24 hours together. We've agreed we'll try and fit it in on a regular basis. Perhaps a long winter weekend to include Christmas shopping trip to Croydon stores.
After Kay left on the Saturday evening I met very briefly with Merry Weather. She is a delightful lady. My only regret's we only had an hour together and I was inclined to be very tired by then. Sunday I spent the day with family. So I had the best of both worlds: Family and friends.
The best part was that everytime I phoned MyMan he sounded upbeat. I didn't probe and took it at face value. Time enough on my return home to hear of all the problems he faced without me. And the effort he made to sound cheerful. I told him how much I appreciated it.
Sunday, 2 January 2011
- Winning a long drawn out compensation battle with Equitable Life via the FOS
- Award of continuation of DLA & Mobility Allowance
- My one week break away to see family after my bowel investigation
- My trip by train to visit family for a short weekend break away
- My nephew's wedding and a lovely 3 nights at a Boutique hotel in Richmond, London
- Bridge Club and lessons
- Family, friends, new PC, Apple iphone, wine and laughter
- Re discovering the art of losing oneself in fiction
- Hypnotherapy sessions to help me get in touch once again with my optimistic self (gave me the energy to get on, do more, think less and not feel guilty for enjoying life while MyMan is so depressed)
- Making plans for 2011: more short trips away by rail to meet old and new friends
- Planning to try and get MyMan to London via rail up so that we can explore where I would like to live - nearer to family
- MyMan is due to attend a 6 week Pain Management course. I hope it will improve his attitude to coping. Now we know this IS as good as it gets we need to move on.
- Many hospital appointments with MyMan at the Pain Management Clinic (raised then dashed hopes and the time spent waiting around)
- Day Case Surgery - 4 days for him and then 1 for me
- MyMan attending a Back to Fitness course - slowly building strength up but no improvement pain wise
- Depressing time when completing application form for continuation of DLA (took us 8 weeks to work through it a bit at a time)
- The sudden onset of Diabetes following his sacral iliac joint steroid injections
- Making yet more adjustments for a health problem
- The lack of effect following Botox injections
- MyMan's increased depression following each unsuccessful Pain Management intervention
- MyMan rarely goes out without me and I still crave some solitude at home.
- I often need get away from MyMan to feel happiness; his negativity is so very draining.
- I still feel home is no longer the refuge it used to be
- I miss the freedom to invite friends in when I like.Any entertaining of friends needs to be planned well in advance. If it coincides with one of MyMan's worse days then I feel guilty and uncomfortable.
- His anger, irritation and unpleasant manner is rarely shown openly to other people. His Dr defends him and says its down to frustration. I know. But it is so very draining to cope with 24/7. I withdraw into myself. It doesn't make for a close marriage nowadays. And I still grieve for the loss of the man he used to be
Thursday, 30 December 2010
But if I'm healthy then what to do about my pains which now are making me so stiff I find it hard to stride out on a long walk. Less activity is not helping me to control my weight.
I've almost forgotten how to walk naturally. In fact I'm beginning to think I think too much on how to walk. Sometimes I march freely along Sdimouth Esplanade and then think "this is so easy". With that thought 'poof' it's gone and I find my legs, ankles or hips are once again stiff and unco-ordinated.
In August I tried a few sessions of hypnotherapy. It certainly helped me to concentrate on relaxing more easily. It highlighted my need to 'focus' more. Which helped my bridge game. I became aware that whatever task I was doing my mind was also occupied thinking of several other things. Mentally reviewing my 'to do list', worrying about MyMan or planning how to cope with a particular current problem/difficulty. I think that now I'm no longer able to share some of my minor day to day worries with MyMan I'm inclined to brood more on them rather than talk them out. The psycho/hypnotherapist gave me homework to do after each of my 3 sessions.
The first one was that I had to change my self talk to a more positive attitude. Therefore not to comment on the negative i.e my need to lose weight but that "I am slim, tall and walk easily" along with "I eat smaller portions" . The second session looked at my level of focus. I had to practice doing a daily task. To really concentrate on focusing on each and every detail of the task. I chose to clean my teeth. To focus only on brushing my teeth without thinking or planning for the day ahead.
It has helped me to think and focus on myself sometimes. I stopped dithering over decisions and made up my mind and went for it. Changed to new PC, bought myself a new bed (it's helped my aching hip joints - a result) explored rail travel, and decided to cease listening to MyMans gloomy negative views and enjoy friends' company. Regardless of his impressions of them. I've decided to follow my own instincts. And am making plans to meet up with a fellow blogger. I try to make sure I always have some event in the near future. To have something to look forward to.
Monday, 27 December 2010
If you stop by perhaps you'll pop over to meet Just Another Carer
For me this was the beginning when I was trying to sort out how to cope. I think I have made some progress since those days. But it is still 2 steps forward and 1 step back kind of life.
Monday, 8 November 2010
Tuesday, 2 November 2010
Monday, 1 November 2010
On my return home I decided that for my nephew's November wedding in Richmond, London I would travel by rail. I've not travelled by rail for nearly 30 years. In those long ago days days it was a train trip there and back. No changes needed and no need to negotiate the complexity of Clapham Junction. So I planned a 'trial train trip'.
The first challenge was in finding out the cheapest way to travel by train. Such a complex system. What was the difference between an First Anytime Single ticket (at £90.30 or £95)and the 'Cheapest First Class single' at £90.30? I quickly found that if I had a Senior Railcard I would get a discount. And another discount if I bought tickets well in advance of travel date.
A planned trip to see family in Croydon was arranged for the total cost of £32 return, travelling First Class with SWTrains. Cheaper than a tankful of petrol. I'd try it.
I was bored and stiff by the time I reached Salisbury an hour and a half later. I was regretting not going by car. I reminded myself that it was to be a relaxing trip and cheaper. And I have to admit by the time I arrived I was far less tired.
MyMan was left alone for only 2 days. Although he didn't eat any of the meals I'd left for him; existing only on soup/sandwiches (and cakes he'd bought from the bakers) I wasn't away long enough for him to come to harm through a less than perfect diet.
For my next trip I have an audio book loaded on my new iPhone and can be entertained as I watch the scenery flash by. Or I could play Bejewelled, Angry Birds or even Omar Sharif's Bridge.
Saturday, 30 October 2010
Tuesday, 28 September 2010
At the time of my visit my sister was grieving: she'd had an old much loved dog put down and a work colleague, who was a really good friend, had died unexpectedly. One way and another we were both for different reasons tired and in shock.
The events once again raised my anxiety levels; along with feelings of grief and sadness.
Feeling so tired we did less than usual. Eating, drinking, chatting, dozing and walking the dogs. And reading. I rediscovered the joy and solace of losing myself in reading. Fiction. Becoming lost in a tale. Escapism.
I've always read a great deal. But of late, the last 10 years. I've been reading for research, personal development and information gathering. Knowledge is Power.
Or, rather, should that be Ignorance is Bliss? I'm certainly more relaxed now I can lose myself in a book or 3.
I realised on my return home that I spend far too much time worrying about, for and on behalf of MyMan. That life is passing me by. I resolved once and for all to get some balance back into my life.
That's what I've been working on the last few months.
Tuesday, 11 May 2010
It was rather a shock when I was told I had an abnormal result following my National Bowel Cancer Screening test.
I've always had a fast transit time. No constipation. No changes in bowel habits. And apart from IBS symptoms that always manifest itself during times of high stress I'd no concerns re my working innards. That was why it was a shock.
I'd had a happy Friday morning playing bridge with friends. Much laughter and a light heart was soon brought down to earth when I found an NHS letter awaiting me at home. I had an appointment at the RD&E hospital on the following Thursday to meet and talk with the Bowel Cancer Screening Specialist Nurse to check I was fit enough for a colonoscopy; GULP.
Regardless of my various aches, pains, palpitations, tension and odd periods of high blood pressure - mainly following the arrival of the letter - I was deemed fit. Even when I was sitting there frightened and anxious my BP was recorded as a 'fine' at 140/86. So I was booked in for 'the procedure' on the following Tuesday afternoon.
To starve from Sunday lunch time. Taking a Senna laxative for Sunday tea followed by 2 other laxatives for Bank Holiday Monday breakfast and again at teatime. Only clear fluids allowed from midday Sunday onwards. It wasn't a pleasant weekend. There are better ways to spend a weekend. I lost count of the number of times I sat on the toilet. about every 30 minutes just passing liquid. I'm sure I was empty after the Senna worked at 1 a.m. The double portion of Picolax had an easy time of it.
I was told that I could have sedation for 'the procedure'. If I had sedation I had to be sure not to do anything for a full 24 hours after. Not to sign any papers (what about my Last Will & Testament?). I would need someone to drive me home from the hospital.
That was a big problem. MyMan has not been able to drive much over the last few weeks. His sudden onset of diabetes meant his eyesight has kept him off the road. Now that his sight is returned to normal his back is in such a bad way I wasn't sure he'd be fit enough to get me home. Friends were on holiday. Or car less. I didn't much like the idea of a taxi. MyMan raised his game and promised to get me there and home again.
I opted to undergo the 'procedure' without sedation. I was told I could use gas and air and if it became too uncomfortable I could change my mind and request a sedative. I knew - and was right -that MyMan once he'd got me there and back home again would more or less collapse in a heap. I couldn't afford to be sedated.
I am happy to say that I managed without any intervention at all. I concentrated on relaxation methods. Painful prods, I told myself were just 'sensations' and nothing to worry about. Turning the corners were the most uncomfortable sensation. Not to mention the amount of air inflating me till I had visions of myself floating away like a big airship. Mrs Blimp.
Polyps were found. Eeach in turn, was cut, caught, removed, cauterised and then a clip or a tattoo applied before moving on to the next polyp. 6 in all; 3 small; 3 large. Overall the procedure lasted about an an hour and quarter. All the air pumped into me started to make me feel nauseous. But after a rest in recovery unit I was given a very welcome cup of tea. And offered toast. By this time I felt I wasn't bothered if I never ate again. But they wanted me to eat one biscuit at least. I forced a digestive down.
On the way home I deposited the cup of tea and digestive biscuit in a layby - outside someone's house. Before we drove on I insisted MyMan wash it away with a bottle of Evian water.
Friday, 2 April 2010
I seem to be having a recurring dream where I am trying to make my way 'home'. To our first house in Gloucestershire. I am carrying heavy loads up steep hills. Trying to figure out whether to take the shortest (but steepest) or the less steep (but far longer) route home.
The place where from my late 20's to mid 30's I used to drag shopping home from Stroud. Lugging heavy carrier bags up a long steep hill for nearly 2 miles. Looking back I realise that MyMan didn't think how I managed to get all supplies (for both of us, a cat and a dog and cleaning materials) home unaided. I can't believe how I just accepted this. A lack of reliable bus service along with high fares meant I would walk to and from town to shop 3 times a week. Once a month a friend would take me along to an out of town supermarket.
Now, on reflection, I believe this contributed to the RSI problems I suffer. An injury in my mid back that affects me from my shoulder, through to my pelvis and thigh. Today I can hardly carry a loaf of bread in a bag but have to hug it close to me.
At the time ( mid 1970s) I didn't drive. We only had one car - MyMan's. He needed it for the daily commute to work near Tewksbury. I used to save the weekends as his leisure time and not request assistance with shopping which he always hated. Even then I put his needs above my own.
He is frequently thoughtless and selfish. But I have partly made him the man he is today. Now I am trying to stop and think of myself, my needs; far more than I have ever done so in the past. Neither of us finding it easy to adjust to the people we are now.
I mentioned my recurring dream to MyMan. He agreed; "it was a long hard pull" up the Old Bisley Road out of town. I asked what he meant as he'd never walked it. For him walking was a ramble in the countryside not pounding footpaths or pavements. "Well, I always had to select the lower gears and just hope I didn't meet the bus labouring uphill". Hmm I didn't realise that it was just as tough for him too!!
Tuesday, 23 March 2010
For the last couple of days his reading has been down as low as 7 early morning and under 10 during the day. But the nurse felt that he could take it a bit easier this week and take time to adjust to this level before they decide whether the units should be increased.
In some ways I'd prefer them to remain slightly high. I'm so anxious that he'd have a hypo attack during the night. That I wouldn't know till the next morning. 2 or 3 times a night I creep up to listen to his breathing to reassure myself that he's OK. But what would the breathing of a man lapsing into a hypo state sound like?? I don't want to make him more anxious than he already is. I'll have to find out the answer some way - discretely.
I've read many books on the subject. I have altered his diet - just a a little - to include more carbs - low GI ones. I'm pleased to see that his favourite homemade cake recipe is in the Diabetes UK Recipe book. So I will start baking again on a regular basis then he can have a small weekly treat.
He has only read one simple book on the subject. He does not want to know how to manage this illness. He has run through a variety of emotions; mainly anger - on a daily basis. With ' Time' I assume his attitude will change. He doesn't like me telling him what is best or not to eat. He wants what he has always eaten. But I refuse to indulge his craving for lots of cheddar cheese, milk chocolate, cakes, puddings and chocolate biscuits until he knows how it may affect his glucose and cholestrol levels. At least he has always eaten a healthy diet full of fruits, vegetables, salad, fish, oats and fibre - it's the extras he needs to know about so that he can make an informed choice.
As it is at the moment I'm the wicked fairy removing all the things that make his "life worth living". (So it's not me then that gives him the incentive to get up in the morning!)
He knows he's being unreasonable in taking it out on me. He feels guilty that I'm on chaufferuing duty again. He has told the DVLA about his medical condition and has been told he can drive. But as his eyesight is variable from day to day I'm on taxi duty until further notice. He made a lovely gesture and bought me a huge bottle of my favourite handcream on the way home from the opticians yesterday.
Friday, 5 March 2010
Then worryingly his vision became even more blurred than usual. Obviously not a virus. We had to move the chair 4' closer to the 42" TV as he was unable to see it properly. I thought he should go to see the optician as soon as possible. His sight was so bad I returned to full time chauffeur duty.
Meanwhile I searched the Internet, Googled "adverse reactions to steroid injections in sacroiliac joints". Nothing that explained his sudden onset of new and/or additional symptoms.
With an appointment to see the optician on Wednesday morning he also arranged to see the Dr again in the afternoon. The optician was surprised at the sudden deterioration in his sight. Thought it was caused by a 'rare complication ' to the steroid injections.
Later that afternoon the doctor diagnosed Diabetes. A blood glucose level of 28. Since then our feet haven't touched the floor.
Saturday, 27 February 2010
I had to take him to the hospital for 8 a.m and be ready to receive a call to go and collect him at 'lunchtime'. Plenty enough time for a spot of 'cheer myself up' shopping. We left the house at 7 a.m with no more than a cup of hot water. He had to starve in case a general anaesthetic was administered. It seemed cruel for me to eat while he was starving So I didn't.
At 8 a.m as soon as I'd deposited him at the hospital I went in search of a cuppa and a bacon sandwich. The only trouble was I didn't know anywhere that opened that early. So I went to a 24 hour Sainsbury's superstore. I had to walk around for half an hour as the cafe didn't open till 8.30. I was beginning to shake; my blood sugar levels were very low. While I was refuelling I planned where in Exeter I'd go and which shops I'd call in, making a list of my intended purchases. On the way out of Sainsbury's I refuelled the car - £40.
It was at that point my mobile rang - there is only one person who has the number of that phone. MyMan. He'd had the injections and was impatient to get home would I pick him up as soon as possible.
So much for retail therapy. All I'd bought was a cup of tea, a bacon sandwich and a tank full of petrol.
Sunday, 21 February 2010
The whole event would wipe him out for the rest of the week. Just as he'd start to recover he was then facing the next session. Pain levels have increased and his muscles seem to be even weaker. Friends have been shocked to see that he has great difficulty climbing stairs. And his concentration, focus and ability to string more than a few sentences together have deserted him. So far by being quiet and reclusive he has hidden how weak and mentally fragile he has become. To socialise once in a while he's been able to don a mask of 'normality' for a couple of hours. The last few weeks he's been unable to do so. Suddenly everyone is realising the shocking truth. He is not the man they used to know.
Tomorrow (my birthday) he is to go to very early to the hospital once again. This time he is to have steroid injections in the sacroiliac joint(s). Neither of us know what to expect. Our hopes were raised over the last procedure. If this doesn't help he feels unable to continue with any more treatments. He believes that 'enough is enough'.
Friday, 22 January 2010
I suggest you explore this link and see if Caring with Confidence would be of any help to you.
I like to meet and share problems in a group when I can but with time being such an issue it isn't always easy. Another problem I find is just how bone wearingly tired being a carer can be. It is so hard to explain to someone who hasn't experienced it. I often wonder whether it is a low grade form of reactive depression. Does anyone else have any views on this?
Thursday, 21 January 2010
Last week he boasted that he had used dumbbells weighing 66 lbs. I said incredulously - "surely not. Don't you mean 6 lbs?" But he insisted it was 66lbs. "But that's about 4 stone - it can't be that" Again he was definite. He'd seen the weight impressed on the dumbbells with his own eyes - demonstrating this by lowering his spectacles down his nose to see properly - and telling me that 'bloody heavy they are too'.
I told him I still wouldn't and couldn't believe it. 6.6 kilos by a HUGE stretch of the imagination I might manage - but not 66 lbs. Not from a man who is unable to help me carry in a bag of potatoes and 2 litres of milk without moaning how heavy it is.
This week he confessed he'd taken a closer look and it was 6.6 lbs. And, as he'd found them very heavy last week and had strained his chest muscles, he picked up the lighter weight dumbbells.
That's MyMan. Mr Atlas he isn't.
Updated: 22 January 2010
Thank you Robert for your kind comment but I feel MyMan and I are quite well matched.
Sunday, 17 January 2010
Thursday, 17 December 2009
MyMan is, understandably, very disappointed that the injections of local anaesthetic in his spine provided no pain relief. Therefore the idea of the procedure to 'burn off the nerve endings' is a non-starter. He is being put on the waiting list for an injection of local anaesthetic and steroid injections into the sacroiliac joints. To see if that will help.
Physiotherapy exercises are making him feel worse. He is slowly noticing a slight increase of flexibility. But as a result of the exercises the pain is even more intense. He is finding it more difficult to cope with just the very basic of daily living activities. Needless to say his depression is worse.
We both feel intensely disappointed. Christmas will be very quiet. No decorations. No partying. Not even an afternoon tea party. As is usual, when MyMan is depressed and unwell, I am bone weary tired. My own aches, pains and stiff joints have flared up. I'm not going to put myself under pressure. So we'll spend a long quiet weekend together. Reading and watching TV.
I can understand that when we believe that 'this is it' we slowly adjust; get used to the limited lifestyle. But with the idea of a pain free mobile spouse I had allowed my hopes to rise. I started to believe that we could get out and about together. To enjoy visiting some of the local tourist sites; of taking a trip to see family. Dashed hopes are hard to bear.
Thursday, 26 November 2009
I tell him it is not a sink for washing hands after messing about with dirty pots in the garden, refilling bird feeders or other similar filthy tasks. He assures me he doesn't; he uses the cloakroom. I know he often 'forgets' to do so. He denies it. So I follow on behind and clean the taps and the swivel spout he touched with dirty hands. He has a stomach upset often; so I try to maintain the highest degree of cleanliness in the kitchen.
Today I heard him use the toilet. Leave the cloakroom and go into the kitchen to wash his hands. I immediately asked why. He said he hadn't. I told him I heard and know that's what he'd done. He thought for a while and finally agreed. He hadn't realised; didn't know why he came out to the kitchen; thought it was because he was probably thinking of something else.
I know that he is incapable of multi tasking but next time he walks passed the bathroom or cloakroom to use the kitchen sink I intend to go into nagging mode. BIG TIME. I've moved the hand wash out of the way - hopefully it will give him pause to wonder why. And I've erected a big notice "this sink is not a washbasin: it's for Cook's use only".
Tuesday, 17 November 2009
Meanwhile I will show him this video interview to see if it intrigues him enough to want to look at the book . .
Friday, 13 November 2009
She told him that he needed to be more positive in his outlook. That his negativity would not help him. I almost said "I told you so" but I refrained. I told him that I had a book and we could look at it and work on change of attitude as an exercise together. He "will give it a try" . . .
I'm trying to train him like a child or a dog. When he is in a reasonable mood and less negative I remain with him longer. As soon as he becomes grumpy, negative or aggressive I quietly withdraw and do my own thing - alone. He prefers to be with me so hopefully he'll make the connection at some point.
They say you can't teach an old dog new tricks but I'm hoping I can teach and old codger new behaviours . . .
Monday, 9 November 2009
At the moment he is 'twitchy' and anxious. I know some of it is due to his concern that he will be 'unlucky' in that the injections into his spine will not work. Or worse, that something will go wrong and he'll be worse off than he is now. He is convinced that nothing will go right for him. I try to suggest that his negative attitude will not help him. That there is every chance he'll be pain free after the injections. The doctor told him it could last for months. But it all appears to fall on deaf ears. He goes for the procedure on Friday.
I'm trying to visualise a positive outcome. I'm working as hard as I can. I need to in order to overcome his negativity.
Friday, 23 October 2009
He used to tell such wonderfully funny stories too. I can remember when he first started to treat animals at the local wildlife centre. He was interviewed by BBC radio while he treated a badger. It became so relaxed it fell asleep. Tony could barely be heard above the badger's snoring.
I would go to him now if I still lived in Gloucestershire.
Monday, 19 October 2009
I was considering Rolfing - I am looking for a 'gentle' treatment. I also like the idea of not having to undress. With the excess weight I've gained over the last 3 years I would feel too embarrassed. I have had reflexology in recent years which can be very relaxing but doesn't address back/neck or posture problems.
I read an article by Jane Alexander on Zero Balancing in the Telegraph on Saturday. It sounds a perfect way to try and restore my equilibrium. I may give it a try. I feel desperate today. Over the years I've had many health problems, falls, whiplash injuries and lately much stress and tension. It would be wonderful if some non invasive relaxing therapy could help. I've contacted a therapist and will let you know how I get on with it . . . or not.
All being well I'll still be able to go to the training day tomorrow.
Tuesday, 13 October 2009
We are still busy with hospital appointments. MyMan is about to attend physiotherapy. He now has a date set to attend day surgery at the RD&E hospital. He is having injections into his spine to see if it will help with his chronic back and neck pains.
I have 2 'training sessions' set for next week. [a] a training day arranged by Devon Carers' Link on "Ways to Feel Good" and [b] "Depression - How to Help" a one hour talk arranged by my local Mind Carers' Support Team.
They both seemed like a good idea when I signed up to them. However, at the moment one of the "Ways to Feel Good" would be to have a relaxing day at home, with a good book, my feet up and a glass of red wine at my elbow.
Tuesday, 29 September 2009
I still feel very tired. I've been told that I shouldn't underestimate the physical effects of the demands placed on me by caring for MyMan. That his depression is sapping my strength too. Apart from the extreme feeling of bone wearying fatigue I have a positive attitude. I'm just frustrated that I never get all that I want to do done each day. I get the 'must do' chores done and am having to leave the 'would like to do' list undone. But it is the latter that are fun, interesting or sociable .
At the moment I'm trying to get myself organised for a Macmillan Coffee morning. Several weeks ago October 1st seemed to be a good date for a charity coffee morning. Now I'm not so keen. I hope the sun doesn't shine that day. The last thing I want to see is all my cobwebs glowing in high definition sunlit glory.
Update: 13th October - All who came to join me for coffee and cake said they enjoyed the chance to socialise for a good cause. I've just paid a cheque for £90 into the fund.
Wednesday, 16 September 2009
My Man fed himself on canned soups, baked beans or spaghetti on toast. On the few occasions that I did surface to go to the kitchen for a glass of cooled boiled water. I would see that he had used practically every saucepan we owned. I was relieved that I did not have to worry about the mounting mountain of unwashed pots and pan. He told me that he would do the washing-up. I was not to fuss, or worry about it.
I finally surfaced on Sunday, but felt quite weak and nauseous. My appetite did not pick up until the remnants of the used saucepans had finally being cleared from every kitchen surface. It has taken a long time to return to normal, whatever normal is. After spending so many days lying down or sitting weakly in a chair. my back muscles are protesting. I feel stiff and old.
If I ever wonder what I do with my time every day. the evidence now lies in front of me. As soon I was able I picked up a cloth. I cleaned the kitchen sink; the bathroom basins and the toilets. Dusting, hoovering, tidying, nothing has been done. At the moment I'm just concentrating on maintaining a basic level of hygiene.
Normal service will be resumed as soon as possible.
Wednesday, 9 September 2009
Wednesday, 26 August 2009
For a 'no fault claim' and with legal protection insurance he ended up paying his legal costs!! There was no money for loss of earnings, future loss of earnings or lost pension provision.
I've known a friend end up with a larger payout for a broken ankle at work - and this when it was discovered she had previously undiagnosed osteoporosis. Since when she has used her compensation money to go on trekking holidays on 4 continents. I can see why he feels aggrieved.
Once his mind started to focus again (after the diagnosis and treatment for under active thyroid) he started to explore whether he had case. A local solicitor searched through files. He agreed there were many instances where there was a lack of 'duty of care' and 'professional negligence'. But to go through the legal procedure will cost. It is also costing him emotionally.
I agree with him. It is wrong. It is unfair. But I don't think it is healthy to keep looking back. The length of time it has taken to reach this stage: where we needed to make the decision whether to go for a barrister opinion has taken almost 2 years. At the age of 65 I don't think he has time to waste on 'justice'. We could do with the money. But . . .
Over the years he has fought many instances of injustice for other people. Against insurance companies, banks, pension firms and once a case of unfair dismissal. And invariably won their case for them. That is why I initially supported his decision to look at taking action. But it has been so time consuming. It is likely to be costly . . . He has so little energy I asked that he drop the idea so that we can use his precious energy on some form of enjoyment.
He has, reluctantly, agreed. He wrote to the solicitor and pulled the plug on the project. Hence his increased anger and irritation. Against everyone. But at the moment, I'm in the frontline.
Tuesday, 25 August 2009
Today he had to go into town to pick up files and papers from his solicitor. The load was likely to be heavy. I hauled a trolley case out of a cupboard for his use. I tried to park right outside the office but no spaces. He refused to wheel the case to the solicitors. And I could see him bent to one side as he carried it to the office. He was annoyed when the secretary there tried to help him. Then he became even more irate as he found it difficult to get the load into the boot.
I can see reasons why he's such a cross patch but when he moans about not having any energy left I can barely suppress the urge to tell him why that may be.
I reckon I know why women live longer than men. It's God's reward to us for taking care of our men
Sunday, 23 August 2009
Some practical suggestions for keeping healthy, and hints on how to avoid succumbing to a virus such as Swine Flu can be found here.
Friday, 21 August 2009
When we first married I would buy a bar of chocolate. Have a couple small squares and not think about chocolate for weeks. Then when I again craved some chocoalate I'd return to the sweet dish and . . NOTHING - gone - vanished. After a while I realised that if I wanted chocolate I had to eat it before it was eaten. Weight started to creep on.
Now I am trying to lose weight. My view is that if it crept on then the best way to lose it is for it to creep away again. I still allow for occasional treats. Some weeks it's one treat per week. Desperate times it could be one treat per day. I buy packs of small chocolate treats. MyMan also needs to lose weight. He thinks I shouldn't have small treats. He blames me for his excess weight. If "we didn't have treats in the house" he would be able to resist them.
He claims to have more willpower than I. He has never been tempted to buy sweets. No he wouldn't. He's never tempted to shop either.The rare occasion I asked him to go buy a loaf of bread he also returned with 4 doughnuts and 2 almond macaroons. One doughnut was for me.
I've tried not having any treats in the house. But he expects something 'nice' to eat in the evening. Nice+ chocolatey and sweet and BIG. If none are available his grumpiness levels escalate to the point where I feel tempted to knife him. So I buy him ice cream to eat with fruit as a pudding after his main meal. At his suggestion I bought treats for myself and 'hid' them. I also buy some tasty items to feed my bridge friends when they come to play which are also hidden away.
During a recent night time prowl he found my hiding place. He opened and devoured my milk chocolate snack packs. As there are "only 2 small biscuits" per pack he ate 4 packs. He also went on and ate half a packet of 'expensively posh biscuits'. He didn't tell me. I only found out when I went to retrieve them for a bridge party several days later. My bridge friends had to make do with plain Rich Tea. Yesterday evening he ate my weeks supply of 6 x Toffee Crisps at 'only' 99 cals. He told me off for buying them in small versions: "only 2 bites and they're gone" -"Such an expensive way to shop".
When I try and tell him that these sweet treats are what add to his weight misery he tells me he gets hungry in the night. As he is constantly fighting Co-Codamol induced constipation, I suggest that a dish of high fibre cereal would be much better at warding off hunger. Then he tells me off again. That if the treats weren't in the house he would have to make do with cereal. I'm looking for a new hiding place. I'll try the cleaning cupboard. I don't think he ever looks in there.
Sunday, 9 August 2009
Even though I draw up a weekly planner occasionally balls get dropped. He then gets impatient with me as 'we've not done' such and such . . . He can't understand why I feel so very tired sometimes. That to me, maybe 'such and such' wasn't high on my list of priorities.
Why is his memory so inconveniently good - sometimes?
I can't figure out why all the things he used to love about me: my sense of humour, my independence, my practicality, my capabilities, my logical brain, my dreamy nature, my rose tinted specs, my spontaneous flexibility, my optimism - are all an increasing irritant to him.
I feel as if I could plug him into the mains supply myself very soon. I warn him that if he doesn't calm down he may spontaneously combust.
Tuesday, 4 August 2009
This morning I still felt low and thought how much I missed the chance of spontaneity in my life. I couldn't remember the last time we did anything spontaneous. With nothing planned for the day I had breakfast and went in for a shower. Standing there in a lather and the door opened. "John rang to ask if we could meet them for coffee this morning? I said yes - we're to meet up at the garden centre at 10.30". That surprised me.
I was surprised even more when after a cup of coffee on the garden centre veranda it started to rain. We all moved inside to try and find a table for 6. MyMan asked everyone "Why don't you come back to ours?" - well - and there I had been quietly wishing for spontaneity. I have had a double dose. I just wished I'd made the beds, cleaned the toilets and put fresh towels out before we went out. And with a lounge that had not been cleaned since a week before I pulled my back. Ah well . . .
If we're back in spontaneous mode I'll have to pull my finger out and raise my game housework wise.
Sunday, 2 August 2009
Tuesday, 21 July 2009
I got out of bed stiffly last Thursday and pulled my back muscles as I tried to catch a urine speciment in an itsy bitsy pot for the nurse. The joys of being a woman.
My pelvis tilted - ouch and F**k . It took me 3 days to get to the point where I could place both feet flat on the floor while I stood. As one leg was temporarily several inches (it felt like feet) shorter than the other. For 2 days I could only sit in a firm garden chair or in my Lloyd loom chair in the bedroom. I had to lie down to relieve and relax muscles but then had to endure a marathon exercise to sit up again.
We both lived on fruit, bread, cheese and painkillers. I became tired cranky depressed. It was a timely reminder for me that this is what MyMan has to endure daily. I was weeping with frustration and tiredness after only 48 hours. Once my powers of concentration returned I enjoyed the excuse to sit, rest. To spend time by reading, reading, reading and watching the cricket.
Tuesday, 14 July 2009
Exhausted as he sat checking on all the other drivers. Exhorting me to 'watch out'; 'that one's changing lanes'; 'mind that car'; 'God, for a minute there I thought he wasn't going to stop'. I breathe a sigh of relief that all these possible threats of danger seem to be driven by males. MyMan calls on 'God' and 'Jesus' a great many times as a passenger. For a man who has no religious beliefs it's rather touching in a way.
I was hoping that a new larger safer car would reassure him. But it appears not. I'm not sure if the anxiety of being in a car adds to the pain he feels or whether the pain he feels adds to his fears. Pain being a perpetual reminder of his accident.
It's several years since he last had a pain management assessment. This time I sat in with him. He needs me to at least listen to what he is told. Besides my acting as his memory he needs motivation. Motivating to follow through with the suggested programme. The action plan is:
- A new pain relieving drug that will also help him sleep
- A 6 week course of acupuncture
- Physiotherapy to correct posture and tone muscles
He dreads the idea of the regular twice weekly journeys to Wonford and Heavitree hospitals. He was looking for an excuse to refuse the suggested treatments. He doesn't want to 'place more pressure' on me by taking him there each time. He doesn't want to ask a friend to taxi him there. nor to use the hospital car service. He's unable to use public transport.
There was also talk of a possible minor surgical procedure. But I'm just thinking of it by taking it one step at a time.
Wednesday, 8 July 2009
Talk is easy enough. It's actions that speak louder than words. And of course any actions planned will need financing. But maybe this is a step in the right direction.
As far as I'm concerned 'Care in the Community' was all very well with its high ideals. But it wasn't sufficiently funded from the beginning. Community Care really means 'leave care to the family' or 'leave the responsibility for care to the neighbours' .
There is even a 'blog' on the need for change 'Care Support Independence' - why don't you pop over, have a look and maybe join in the debate.
Friday, 3 July 2009
I went into the surgery this morning to book an appointment with the nurse for a routine blood test in a couple of weeks. The first thing I was asked was did I have a sore throat - "yes, I often have one during summer". It's caused by a post nasal drip due to hay fever.
Did I have a fever? "How would I know with all these hot flushes I keep getting? "
I managed to make an appointment. If I should end up catching swine flu I now know there is no point in calling in to the surgery to see a doctor. The waiting room and all the local chemists have huge notices telling us to stay at home if we have swine flu. Don't go to the surgery.
I thought all us 60+ year olds were supposed to be immune from it. Perhaps I don't 'look' 60.
Monday, 15 June 2009
In between times I've been trying to enjoy myself - bridge class, playing bridge, and coffee with friends. Along with all the usual chores of laundry, cleaning, cooking and shopping. The garden's had to look after itself. And it shows. Shame. Can't be helped. Something had to go. It was either MyMan or the garden. My choice may be different another month.
MyMan has had a few sessions with the psychologist. Testing his short term memory problem. The psychologist is "almost 70% certain there is no dementia". He believes that MyMan lacks focus and concentration due to depression and the energy sapping chronic pain. He has referred him to the Pain Management Clinic for a full re-assessment. But he wants me to monitor the situation and return to him if MyMan appears to be getting worse. He said that if dementia is present, there is much that can be done if it's 'caught early' enough.
MyMan also has a cyst on his eyelid which is causing him a problem and will need minor surgery. He's had a CT scan for his chronic sinusitis with a view to possible surgery. And now he has infective conjunctivitis. It's just as well most of my health results not showing up much of a problem; other than a raised BP. I don't have time or energy to be unwell. I'll have to practise the yogic breathing exercises more often and chill out.
Margaret, my carer support worker, suggested that MyMan could use the hospital car service. It would give me a break and the chance to have a couple of hours alone at home. I loved the idea but MyMan said he didn't want to travel over to Exeter with a 'stranger' in a 'strange car' .
I finally went to the doctor. After an alarming 2 hour session of a a racing heart and feeling twitchy I thought I'd better go along for a check up. By the time the appointment came around I felt much better. But rather than cancel I thought I'd go in and just tell him how I had been feeling. I know that I've been stressed and tense. I assumed all of my symptoms to be psychosomatic.
Sitting in the waiting room I could feel myself getting tense and anxious. No amount of deep relaxing breathing could ease the feeling of unease.
By the time he checked my blood pressure it was UP. He ordered a routine ECG, fasting blood tests and another BP check with the nurse. I'm to return to see him a couple of weeks.
A couple of days after the blood test I received a letter telling me to book in for a 'routine blood test' in a months time. What have they found?? My anxiety levels are on the up again! Take a deep breathe; breath and chill out. CALM .... CALM ....
Friday, 22 May 2009
My much loved Jazz which was perfect for whizzing around the local lanes and small villages and towns has not been suitable as our main car. MyMan finds it difficult to get in and out of it. It is a hard jiggly ride for someone with back problems. On the rare occasions that MyMan drives, I too find it hard in the passenger seat and often end up with back ache.
It's taken many many months to choose. Initially we liked the Toyota Corolla Verso but it didn't have an automatic model - only semi-automatic. I wasn't keen. Even if it did sound very macho.
So we progressed to looking at the Ford S Max; the Citroen Grand c4. Honda CRV and numerous others. Many very comfortable cars. The big difficulty was in finding a petrol automatic. For the limited mileage we do each year I didn't want the hassle of a diesel automatic and the concern about 'particulate filters' maintenance when driving so many short journeys. My annual mileage usually less than 5000 miles. I cannot get particularly excited about particulate filters - whatever ... Some salesmen tried to tell me it wouldn't be a problem. But I didn't want to have to pay extra on servicing each year if I'd only done limited mileage. A potential problem I don't need or want.
The Honda CRV very comfortable when MyMan, with his short legs, managed to climb in. But he felt it would be embarrassing to take a step stool every where with us, so that was off the list. We almost purchased a Nissan Qashqai. I love the adverts. I like the idea of young funky urban image. No problems finding a CVT automatic petrol engine. Only problem was it was a bit small. MyMan had to flex his neck (difficult) to get in. I loved driving it. It felt just like the Jazz. But larger and more solid. MyMan felt it was a good compromise but still hankered after the Verso. He'd taken lately to admiring them in car parks and sighing deeply.
Then just as we were going to commit to buying the Qashqai we read this article in the Telegraph. Two weeks later; 2 test drives completed and we are about to seal a deal and buy a new car. New to us that is. I'm not sure there will be any 2nd hand ones on the market yet so we'll see if we can find a demonstrator. It's easy to drive but feels a bit wide to me. Especially round the narrow Devon lanes. I hope to get used to it once I drive one regularly. It's a sedate drive but maybe at age 60 I should now become a sedate (or a sedated) driver. At least I'll be able to eyeball lorry drivers. Toyota have a reputation for reliability. I hope it will be money well spent. It seems a lot to pay out when we no longer have an income.
Friday, 1 May 2009
It was good to share our experiences and to hear that so many of our PIGS [Person I Give love and Support to] carry on in the same way. How self centred and selfish they are. How they say one thing but frequently mean another. How much they dislike our going out to enjoy ourselves. The emotional pressure or emotional blackmail our PIGS use. Our own feelings of grief and loss. How sadness affects us. That Depression is contagious.
For 3 hours we talked. Sometimes seriously. But more often in a lighthearted way. We also were able to laugh. Many laughs.Laugh a lot. Shared laughter is the best thing in life.
Saturday, 25 April 2009
While I was talking things over I was still inclined to be defending or explaining MyMan and his mental problems. It was a form of relief. She didn't think it was unreasonable of me to wish to move closer to family. Agreed with my view that if MyMan rarely ventured out far there was very little to matter to him about where we lived. But even then I still felt inclined to balance the scales. I can see from his point of view that what he knows could be much 'safer' than a leap into the unfamiliar. A case of 'It's better the devil you know when choosing whether to leap between a rock and a hard place . . . . '.
I've agreed to meet up with a small group of carers who are in similar situation. To see if we can provide mutual support. I was told I had a good sense of humour and was likely to enjoy the company of one lady in particular. Her Man developed depression following his retirement and their move to Devon. This was just the scenario I had planned to avoid. Choosing to relocate to our chosen retirement area well in advance of the event. To establish roots before the next major change in our life. But as they say 'the best laid plans of mice, men and women gang awry . . .'
I found I was emotionally exhausted in the afternoon but still entertained a friend to afternoon tea. It was her birthday.
I'm trying to be more selfish. To stop considering 'friends' needs above my own. But like an addict it's one step or one day at a time. I'm trying in more ways than one.
Sunday, 19 April 2009
We agreed we would go out on Sunday this weekend. Once again I waited for MyMan to surface from his slumbers. We had a similar conversation as we do prior to every trip out together. "Where shall we go?" he asks me. "I must get a walk in, somehow. . ." he said. I draw breathe to reply and he suddenly suggests "Burrow Farm Garden - I love it there . . . ". Surprised as he rarely suggests anything that he'd like to do I draw breathe again to agree. Before I can open my mouth he tells me "that's no good - it will make your hay fever worse".
I disagree. My hay fever is bad enough here where we are surrounded by at least 8 fields of rape. Especially after spending a few hours toiling in the garden. Although the symptoms of hay fever can feel like a dose of flu there is no way I will allow it to limit what I want to do. I tell him so. Irritable now he tells me he doesn't want me to go somewhere where I'll feel the worse for going. He'll forgo the visit to save me discomfort. But wistfully tells me " I do so love it there". .
I decide I'll go anyway at which point he says he feels it will be too far for him today. He doesn't want to do a long journey. 'Long' means about 12 miles and will take about 20 minutes.
I think I'm beginning to learn the rules of this 'new game'. But he doesn't like how I play.
Thursday, 16 April 2009
Well I hadn't noticed life suddenly being kinder to me. I have started to try and focus on the positive aspects of my world. I am trying to appreciate more the good things in life. Shoving all the worries to the back of my mind. Ignoring the negativity emanating from MyMan. Trying to let the aggression and irritability bounce off me without any adverse effects. I imagine myself in a protective bubble. When MyMan is pleasant and 'normal' I come out of my bubble but it's always there in the background . . .
I had a phone call as I was preparing lunch. Up to my wrists in oily pilchards MyMan asked me "who's that?". I told him we wont know till its answered. He took the hint. He doesn't always. It was for me. Margaret from the Mental Health team wants to meet me to find out how I'm coping. She offered me the chance to visit her where we could talk without my feeling " inhibited or disloyal". I almost wept at the words and her understanding. I rarely get the chance to speak privately about my anxiety over MyMan. Other than this blog that is. It is still hard not to feel disloyal but he is not the man I've spent so many years of my life with . . .
In a strange way I am a mixture of hopeful, expectant and nervous about the meeting. Maybe 'this is what I deserve'?
Saturday, 11 April 2009
Thursday, 9 April 2009
MyMan still likes to make the decisions on financial matters. But it is becoming more onerous task for him. I take care of the day to day movements of cash from savings accounts in and out of the current account to meet bills. I keep a list of various accounts on a the spreadsheet. A list that MyMan uses to complete the annual tax assessment forms. But although he has a print out each month he is not retaining the information.
Another worrying example is that he cannot remember opening some of the fixed term savings which are now coming up for the end of term. One particular account he asked me twice did we have a Bond with X Bank. Yes we have. He then told me that we have to access it via a PIN and Password. No trace of which can be found. I've searched high and low. He doesn't remember completing a form to select a 'memorable number' and a 'memorable word'. I asked to look at the paperwork. He has written all the information down bar the security details.
The bond was taken out when I was about to take a break away. He asked me to sign the cheque before I left as he didn't want to miss the good offer. I seem to recall his telling me the word and number he'd decided to use. I assumed he had written them down for safe keeping. Being preoccupied I didn't check. Now I realise that I can't assume anything.
He's very annoyed that we are missing out on securing the next 'good' fixed term deal. But the bank will not allow me to authorise transfer until I can confirm the 'memorable number and password'. Security details will have to be 'reset'. Being the Easter weekend the bank is unable to send out the relevant forms until Tuesday after the bank holiday .
I was able to supply names, date of birth, address and account number along with the typo error they have been using in my name on all statements I am annoyed they couldn't then telephone me back using the number they have on their file to enable me to request the transfer of funds into their 'special limited offer' which closes on 13 April.
MyMan is very irritable and is blaming me for not retaining a note of the number and password. I think it is a form of displacement activity anger.