A family of four and one stroke

"Ariel view", by Susie Mallett, 2010

An exception to the rule

Last Wednesday evening I was just about to settle down to do some more of my ongoing work when the phone rang.

As an exception to my rule, I had given my home number to one of my adult clients with whom I was planning to do some early-morning speech sessions before the rest of the group arrived.

This man, the newest member of the stroke group, has in the last few months unfortunately developed epilepsy. He hasn’t been feeling well since he started taking medicine for this and, as an added problem, the balance has not yet been found. This has meant that he has had to cancel some of our sessions. His wife phoned me on Wednesday to cancel another one as he still feels quite poorly.

As this man cannot speak spontaneously it is difficult to know how the medicine is affecting him. But we can see that he is wobbly on his feet and very sleepy. He confirms that he cannot concentrate very well and feels very insecure when moving around on his own. He is anxious about leaving the house. He is worried that his wife will be driving him and that he may have a seizure on the way.

His wife had just phoned to say that they were sorry that they wouldn’t be able to make it again in the morning. She said that she wanted me to know so that I do not leave home specially early to meet them. She went on to tell me a lot more than just this. How glad I was that she had my phone number, and not because I could leave for work in the morning thirty minutes later.

A conductive family

This family is one of the best adult conductive-upbringing families that I have ever met. The wife is amazing, I would welcome her any day to work with me in my group. In fact. she is now actually present in the stroke group most of the time. She drives her husband the sixty minutes on the motorway to us and then watches or joins in when the weather is too cold and dreary to take a walk outside.

This winter the sessions have been quite lively with partners and carers joining in, not wanting to be outside in the freezing cold and snow. However inviting the countryside looks, they have found our company more inviting than a tramp through deep snow!

Over the past week I have had a lot of feedback from these people. I hear that the partners, carers, wives, sons and daughters have not only been observing their own family member but also the rest of the group, and they report back on their progress too. It is very motivating for us all to hear this.

The wife I had on the phone did just the same. She began to tell me about everything that she had observed in our group, both when I work directly with her husband and also with the other clients. She told me how she tries to adapt all that she learns, to use it in their life at home.

Copy me. Look, this is how you do it!

She told me so many things, like how she saw that her husband was standing without shoes on in the group and could hardly believe it when he lifted first one foot from the ground and then the other. When they were at home the same day she suggested that because her husband could do this unaided he could perhaps take his trousers off standing up rather than sitting down, which would be so much easier for him. He now does this always.

She told me how she observed that her husband, even though it is still less than a year since the stroke, walks better than most of the people she sees at the clinic when they go for appointments with their doctor.

She says that it is because I told them at the beginning, about six months ago now, that he must try to prevent the rotating movement from his hip as he walks. I told them that, as he can bend and stretch both hip and knee, he must learn to use this movement again when walking as soon as possible, and must be continuously reminded to do so.

He has done so. He has learnt it and now he walks without a stick indoors, and sometimes outdoors too.

This observant wife told me how she tells her husband that she will be his eyes, looking on the floor for him and will tell him if there is anything in his path. She tells him that, while she does this, he must concentrate on walking upright and looking further ahead than his feet, thereby stretching his body with every step he makes.

He does it very well. When we work in the group I always ask him to look at his wife as we walk. He is very proud to be able to do so.

She told me too that sometimes he comes into the kitchen and asks her to bring a glass of juice into the other room for him. She says to him “You can do it yourself, look this is how”. She shows him how, she knows how, having observed him carry his walking stick in his hand in the group, then she walks beside him as he does it until he feels confident enough to do it alone.

She tells me that she never tells him simply that he can do it himself. She always shows him how. She says that she has read so much about stroke and aphasia and she realises that she can never be really sure whether he remembers how to do it himself.

What a wonderful lady, wife and mum she is.

Not surprisingly the information that she has gathered over the past six months, apart from what she has learnt in our group, comes from the sort of books that I always recommend. Books written by fellow suffers, or by carers and partners of stroke victims. It is from these books that we learn most.

Not only learning but teaching too

Not only is she there living conductively with her husband, this wonderful lady is educating not only her two sons but also their extended family and friends.

They have always entertained lots of friends at home and the moment that a word is said about guests being too much work for her these days this lady jumps up and says:

“Oh no, you must not stop coming, my husband has got to learn to speak again. How will he do that with no one to talk to? And me, what about me? I need someone to talk to, too."

Of course huge crowds can be exhausting for stroke victims, especially those suffering from aphasia, but small groups of dear friends can provide the key to opening up new means of communication.

We went on to discuss that the reason for planned these early morning speech sessions for her husband had been because we were not only uncertain where the key is, but also where the lock is that is preventing us getting in, and of course preventing her husband getting his voice out.

I need a lot more time with this man alone to be able to determine the best methods to use to prevent frustration and to encourage communication. His wife is doing all that she can, using all that she has learnt and is also searching for this lock and its key.

The members of our group are also doing their bit. They are determined, as they always are with new members, to get him talking again. I encourage a form of questioning that requires simple answers and I realise how difficult this is for even some of the more fluent speakers. The wife observes and teaches this to her sons.

We have two more early morning speech sessions planned for this week. I hope that we can make a good start then in our hunt for a way through.

This conductive wife explains to me how disappointing it is when family members say: “But he isn’t making any progress”. This lady is tough though, undeterred, and she immediately begins to list for her visitors all the small and almost invisible steps that he has made. Things that happen when they are not there, like cleaning teeth standing up, carrying a drink to his place, walking with his head held high, spending thirty minutes at a go, and not ten as before, in the office sorting out their papers.

She tells me about how their two teenage boys long to have chats with their dad again. About how she has to comfort them and teach them what she has learnt in our group, so that they too learn how to encourage their Dad to speak.

She told me on the phone about her ambitions as a young woman. She wanted to be a physiotherapist. I told her she that is already a better conductor than many. She understood what our group is aiming for from the first moment she joined us, and introduces everything step by step into her family's lives.

She doesn’t tell her husband to blow his nose, or to carry the glass or to comb his hair. She says: “Do it like this, watch, you can do this, copy me”. She tells me that he does it, he copies her.

She deserves a medal!

Taking a break

She also told me that she has learnt to sit down on the sofa beside her husband, leave the washing or the cleaning till tomorrow, and just sit there beside him and read a book. She told me how much she appreciates it when in the group I ask the partners how they are. I inquire how their aches and pains are, how often they do something for themselves, suggest massages and relaxing times with friends, and I remind them that they are still themselves, still a wife and a mother, or a husband, a father or a worker.

She tells me that she has had to learn this and that it helps her to remember to think about herself when I ask her each time we meet how she is.

It is knowing people like this wonderful lady, this amazingly loving wife and mother, this intelligent gatherer of information and transformer of all that she learns into something useful for their daily life, that makes me cry with joy that I do the job I do.

Real lives

It is conversations like this one last Wednesday that make me so angry with myself because sometimes I let the world get too much for me, even when, in comparison to the life described above, my life is so easy and so enjoyable.

When I put the phone down I made a note for myself to suggest to this lovely, articulate lady that she keeps a diary. I will suggest that she records what is happening in their life, if possible going back to the early days.

I am sure that reading what she has to say about "life as a family after a stroke" would be a great help to her and her family, and also provide much motivation and information to other families in a similar situation.

PS

We will be swapping lists of biographies and autobiographies in the group this week, I will list any new ones here later.