"My Life After Stroke" (A Carer's Story)
Since my husband first stroke, our lives have changed a great deal. I was a primary school teacher, very busy and involved in lots of after school activities. Now I am a full time carer. Because my husband was always fit, did lots of walking and was rarely ill, I thought he was always going to be like that and although he was 25 years older than me, it wouldn't be a problem. How wrong I was.
His first stroke was six years ago. He recovered quite well and was very lucky as it really only left him a little bit slower and his speech a little slurred when he was tired. We talked about me finishing teaching then but decided to wait a while and see how things worked out. We finally made the decision that I would give up teaching after we discovered he had an aortic aneurysm and had to undergo major surgery. This set him back quite a bit, and it took along time for him to return to his normal self with no trace of a slur in his speech - about two and a half years.
Just as I was thinking that he had made a complete recovery, my husband had another stroke. Not so obvious as the first, as that had been very obvious, this time he became very confused about everything, and he didn't seem to be able to remember where he lived and lots of other day to day things, such as the year, month or date. It also affected his mobility. He was very happy and easy going (usually grumpy) happy to spend money (very out of character) but also very easily surprised. Some of these memories have returned but unfortunately, he cannot remember that members of the family and friends have died and he often asks about these people particularly his parents. This was at first very upsetting, but now he seems to accept the fact but is unable to remember the event. I still need to remind him of these events, and his short term memory is poor, meaning that I have to answer the same questions over and over again which can be very frustrating on some days. He is also now disabled and is unable to walk any distance without my arm to hold onto or a stick.
I have found the change in our roles, particularly regarding money; very difficult as it is now all my responsibility. He is unable to drive, organise anything we do, decide where we go, what to eat, or even if he wants tea or coffee sometimes. I am responsible for him taking his medication, telling him when to take a shower, change his clothes and making all his meals. If we go out, I can leave him for a short time to have a coffee while I quickly look in some shops but one day, I was a little longer than expected and when I got back he had disappeared; only to be found two and a half hours later at home having a cup of tea and a biscuits, as he took a taxi ride on his own to return home.
My husband has recently started an art class as his hobbies of the past were no longer appropriate. This gives me 2 hours every week when I know he is safe and gives him an interest and some stimulation. We also have some family living who live near who help by looking after him for a weekend or the odd day so that I can meet with girl friends.
One thing I have no regrets about is giving up my job, as this enabled us to go on lots of holidays while my husband was still able to get around easily. Last year I took the plunge and we went abroad again. Assistance at the airport is essential as this takes away the stress of getting to the plane on time etc; we once missed a plane because it was too far away to walk to in time.
Going out for me is not always easy as I worry that he is safe. However, if I make sure he has eaten before I go, and leave a note with my mobile number on and what time I will be home, I can still go out for a few hours. We have had to keep a traditional telephone as my husband cannot get to grip with the digital cordless ones. He often confuses it with the remote control for the television.
Recently, we have received support from the Alzheimer's Society and the memory clinic who have arranged for me to go to a carers' group and have reflexology and learn about alternative therapies that help keep my husband and myself well and also calm. Inevitably, we still have arguments and sometimes things get too much, but then I think of all the people whose lives are much worse than ours and I feel better. After all, we can still go on holidays, go out for lunch, visit friends and relatives and live good quality lives.