The ramblings of a CARER.

My name is Nick and the love of my life, Sas Freeman had a stroke 5 years ago. When someone you love has a stroke, initially you, now the carer, may have one, two or more negative emotions – anger, disbelief, blame, (was it my fault), why me, need to leave, unable to cope, don’t need this, this is going to change/affect my life and I don’t want it too. All a bit self-centred I know, but believe me it happens and it tests the love you have for the survivor.

There were two challenges for me being a carer for a stroke survivor, the physical disability and the emotional change. The physical disability is the easy one to come to terms with, you can see it, the emotional one is much harder and requires patience, strength; resolve, thick skin, understanding, empathy, the ability to second guess what is needed/required at all times and a lot of love.

Initial feelings and challenges

Disbelief – seeing someone in hospital does not prepare the carer for when the stroke survivor returns home. Not knowing the limitations of the condition. So many questions, what can the survivor do? What will they be able to do in the future and when? What facilities/adaptions are available and how will they help?

Trying to support other family members who I thought were in dis-belief. Not that I thought that they believed that Sas hadn’t had a stroke, but just disbelief that someone that young could suffer from something that is normally associated with older people. Being a man I don’t pick up on others’ feelings very well and trying to recognise and understand the effects on our son was difficult. He seemed to take it in his stride but I am sure on reflection that there was a lot going on underneath all that bravado.

On Sas’s return from hospital I was in unchartered waters and felt I was drowning. Before the stroke I was in a situation of me being totally looked after by Sas, now the roles had reversed to me looking after Sas totally, this means everything, plus look after our son and trying to keep a full time job.

Coping with the short term offer of help from friends, knowing that if accepted it would only be short term and I would need to cope eventually so it might as well be now – BIG MISTAKE, take as much help as is offered.

I was ill prepared for the mental damage that the stroke had inflicted and its repercussion – memory, emotions, feeling low because she was unable to do what she had always done.

Liability

I found this explanation helpful – liability is the term used when someone is more emotional and/or has difficulty controlling their emotions. It can happen with many neurological conditions and often happens after a stroke. Some people describe the feeling as though all their emotions are “much nearer the surface” or stronger after their stroke. For example some people may become upset more easily, or cry at things they would not have cried at before their stroke. Their emotional response is in line with their feelings, but is much greater than before the stroke. For other people the symptoms can be more exaggerated, and some people find that they cry for little or no reason. Less commonly, people laugh rather than cry, but again the emotion is out of place and does not match how they are feeling at the time. These emotions usually come and go very quickly, unlike when someone feels upset and is crying. Some people may even swing from crying to laughing. Although the individual realises that their crying or laughter doesn’t fit the situation, they cannot control it and this can be very upsetting. These episodes of crying can often be misinterpreted as depression. Sometimes people with emotional liability have depression as well, but crying because of emotional liability is not necessarily a sign of depression. If there are doubts about whether or not the individual has depression, a mental health professional might be able to help by assessing and advising on treatments.

Strokes can cause changes in someone’s behaviour or personality. They may become impatient and irritable or withdrawn and introspective. Sometimes previous character traits can be reversed, with a mild-mannered person becoming aggressive, a difficult person becoming more passive, or a once sociable and lively person becoming less sociable and withdrawn. More commonly, however, existing traits are exaggerated.

Family and friends of stroke survivors who are affected in this way often find changes to behaviour and personality hard to deal with. People can be upset by the things their relative says to them and may find them very difficult to live with or to be around.

Some carers find that the challenging behaviour is aimed only at them and that the person affected by the stroke is reasonable with other people. This is really quite consistent with people’s behaviour generally. Most of us are more able to get cross with the people we are actually closest to, as we feel safe in the knowledge that they will probably forgive us and still want to see us. Some stroke survivors seem unable to recognise or understand that their behaviour or personality has altered, and feel that there is nothing wrong with them so they have no reason to try and change. This kind of situation is harder to manage so it is important to try and get support from other members of your family as well. You may also find it helpful to avoid confrontational situations and to walk away if a situation is becoming too difficult to manage.

As a carer, your wellbeing is important, for you as well as for the person you care for.

“Carers get very tired,” “They don’t sleep enough and they may do a lot, worrying, handling emotional stress, driving around, lifting and cooking, which all can take its toll. “The combination of psychological and physical tiredness can push people to the limits of their patience.”

Tiredness and depression may become bigger problems. Taking regular breaks and having time for YOU is crucial. This may be a few hours every day or more formal respite care (short breaks from caring). Try to organise the day so that you have at least a little time to yourself.

My experience is that everything to a stroke survivor is either, black or white, right or wrong, correct or incorrect, there are no shades of grey. It can be a case of their way or no way, a stroke survivor is rarely wrong and the carer has to agree and understand why they think they are always right even when they’re not.

To see someone you love make dramatic improvements due to their effort and determination, supported by a little help from you, makes all the effort a carer puts in so rewarding and well worth it.

Some of this Blog has been taken from my Chapter in Sas’s book ‘Two Strokes Not Out’ which was written to help both survivors and carers.

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