Emma’s husband had died unexpectedly several months ago and she decided that she could no longer defer sorting out his personal belongings. She decided to start with the papers on his desk and found this letter:
“My Dearest Friend and Wife,
I want to take the opportunity to describe how much you have meant to me, particularly during the last few years. I am writing this letter now since it is likely I will die before you in view of our age difference and also I am finding typing is becoming increasingly difficult.
My mother was my first carer. Family carers have this responsibility thrust upon them. All carers are listening to a call of love.
You and I were both born normal healthy babies with all the standard extras that were taken for granted. Hence when our mothers made us they incorporated the customary propensity to deteriorate: a remote possibility to young minds when we married.
Do you remember our bewilderment when my body started to rebel against my instructions? It would be extreme to claim it went on strike but it became very reluctant to obey me. To add insult to injury limbs and muscles would not stop shaking when ordered to stay still. This insubordination became so bad you insisted I pay the doctor a visit. Unlike my body, I knew my place and did as I was told!
My brother had started Parkinson’s disease several years ahead of me so we were familiar with its difficult effects and slow deterioration. We visited the specialist with some trepidation. Possibly the most devastating moment in our marriage was when our fears proved to be correct and Parkinson’s disease was diagnosed.
I don’t think you grumbled once when we discovered that Parkinson’s is a neurological condition, which gets progressively worse and creates unseen difficulties.
You had to share with me the disease taking its normal inexorable course of weakening together with the tremor: rigidity in muscles that stop limbs from functioning; and slowness of movement which effects walking and balance. I don’t think you grumbled once when we discovered that Parkinson’s is a neurological condition, which gets progressively worse and creates unseen difficulties. Apart from the normal physical symptoms we also live with my short-term memory; tiredness and anxiety; a feeling of insecurity; and mental slowness.
When my mind refuses to function in its accustomed manner do you remember how we joke as to whether I should ask for a head transplant? We decided against this since we could cope and anyway our doctors are so overworked!
The pills I have to take are marvellous and contribute to a reasonably mobile life. Perhaps the simplest – but amongst the most important – assistance you provide is to ensure I take my pills regularly. These tend to normalise the worst effects but only mask the long-term subterranean deterioration.
To help me overcome the problems of waning mental and physical abilities you are constantly alert to minimise the upsetting effects of the disease. So not only do you frequently serve as my memory but also you assist my failing physical being.
Let us pass over with horror the number of times you have rescued me from embarrassing situations following a short-term memory lapse. How many friends would have been hurt because of my poor retention – or rather to be positive about it – a good ‘forgetter?’ Less harmful, but just as upsetting, is how often the item I am using loses itself, including our cat that we have parked a minute before. Sometimes I lose my way in our hometown!
In addition you look for new ways to help me. To encourage my love of handyman jobs around the house you gave me an electric screwdriver. My writing was becoming unintelligible and looked as though I was teaching a spider to write for me by letting it swim in the ink bottle! The most effective way to support my failing writing was to help me buy a new word processor. However, there is nothing you can do when cups of tea becomes alive and jump out of my hand or when my legs decide to stop walking and I fall.
I guess you have had a lot to do with the fact that there are so many carers in my life. Our family is careful to look after Grandad and ensure he does not become distressed by his condition. But what have you said to Master Serendipity Cat that has made him so loving? He helps me wake up in the morning by patting his paw on my face. He then stands by encouraging me over the difficult operation of getting my body, a reluctant slave, to start work so that it will climb out of bed. However, perhaps his motive is not entirely unselfish since I suspect he wants his breakfast!
Let me consider the situation from your point of view. You married a perfectly fit young man who had made a sailing boat and had been class champion of his club. He became a healthy qualified professional who was satisfactorily employed when without warning he began to deteriorate physically.
Your task has been as difficult as mine to come to terms with the change in our lives caused by our uninvited guest, Parkinson’s disease. Sometimes it has not been easy to remain positive about the problem, but with your help we sort ourselves out, and plan ahead to minimise the long-term impact.
“In spite of your burden you have remained cheerful and loving”
The measure of a carer is the degree he or she sacrifices their independence to benefit the disabled relative. In spite of your burden you have remained cheerful and loving. I hope this unselfish giving bestows an internal joy in lieu of your lost external freedom.
My Dearest, I have to say that you are not quite a saint but please do not tell anyone I said this! Understandably you sometimes suffer from the problem of having human emotions and wallow in grumpy spells. However, without doubt you have learnt the secret of compassion. You say so often that virtue is its own reward.
You not only help me through my distressing disorder but you are perpetually preparing aid for charities and clothes for the less fortunate. This practice restricts the time you have to carry out housework, which in turn allows me to assist you when my body cooperates. One of the imprisoning effects of disablement is the heartache cause by the wish not to be a burden. Thus on of the greatest freedoms you bestow upon me is to allow me to assist you in your philanthropic work.
Parkinson’s disease is a grind but because of you I don’t mind. Without you I would forget to take medication which would lead to a serious lack of co-ordination. But by guiding, encouraging and consoling me you have minimised my feeling of moving in treacle or of having a head full of cotton wool.
Without you I would quickly degenerate into a grumpy old man weakening mentally and physically. You save me from any inclination to become disagreeable, disappointed or seriously disabled. In every deed you steer me where I fear to go because I dare not roam from home along. Hence my dear and vigilant wife you act as a caring mother who creates a managed environment whilst allowing her charge the freedom to be….”
This letter did not end but Emma remembered how her husband valued the independence fostered by her willingness to give of herself without expecting any return. She felt her sadness at his loss of life as she thought to herself that he had been released from a broken-down body.