He handles Alzheimer’s with humour

MBOMBELA – After reading the heart-wrenching story of Dirk Fourie who cares for his wife, Esther, who suffers from Alzheimer’s, Peter Lawson writes:

As a start I should mention that what I am about to write applies to myself and my beloved Mary. There are differences with all people who have Alzheimer’s, as well as with their carers, so what I say may not apply to all of you reading this, if you too are taking care of a loved one with this sad disease.

Two things I am usually asked about Mary are: “How long has she had Alzheimer’s?” and “does she still know you?”

To start with the second the answer is, “She doesn’t know me anymore, or at least doesn’t appear to, but that is not a problem. I know her and will love her and care for her to the last”. Sometimes she responds when I am with her but most times not. I do feel she enjoys company though, whether it is myself, another member of the family, a friend or even a complete stranger. The important thing is not to be sad when with her, because even in her present condition she can be happy and at times we can even make her laugh.

The first question is always a difficult one. Alzheimer’s starts so gradually that at first it is hardly noticed – just a bit of forgetfulness which initially in my case was frustrating at times, until I really knew it was Alzheimer’s and that it would not improve but just get worse. Feeling sorry for myself was not on though and we still had happy times together and would laugh at some of the silly things she did. She was scared at times when doing something she hadn’t intended to do or forgetting where she put things. My heart went out to her when I could see fear written on her face. It would help me and her if I comforted her then and by changing the subject she would soon forget about it. I tried to be careful not to reprimand her as that only makes matters worse. Not always easy though, like for instance when the house keys were lost or given away and locks had to be changed, or when she drove into vehicles while parking and I ended up paying for damages to irate drivers. I don’t always remember these things now, and that is not because I too may have Alzheimer’s, but because I have long since put such incidents out of my mind. There is no point in dwelling on them.

I cannot say exactly when the initial stages started, but I do know when she took a really big plunge. That was 11 years ago when our eldest son was murdered in Johannesburg. Her condition deteriorated rapidly after that, which in some respects was a good thing because in no time she had forgotten about that horror in her life. She needed constant care and attention, which was difficult at times as my work took me away from home fairly often. There was always someone who would stay in with her then and I was indeed fortunate in that way. I would worry about her when I was away but time meant nothing to her. If I was away for just one day, or two weeks she would react as if I had only been gone a couple of hours. Sometimes I would be reprimanded though but it would soon be forgotten.

Writing this is not easy because I have made a point of putting bad times out of my mind and concentrating on the good side. In my personal case I do not find this difficult to do because I have hobbies and interests that are wonderful therapy and when concentrating on my pastimes they take my mind completely off my problems. I am indeed fortunate in this way and wealth is not just about money.

There have been many amusing incidents which I do remember, but on occasions I have been told, by people who do not understand, that I am cruel and unkind when I laugh about them. There were times when I could get Mary to laugh about silly things she had done as well, but I refrained from reprimanding her because that would not help her or myself. One incident was frequent and sometimes embarrassing. She loved going shopping with me, but would ‘shoplift’ which resulted in me paying for items not needed, or she would put goods in other shoppers’ trollies, or just take items off the shelves and put them elsewhere. I had to keep watch constantly, but even then she would get away with it. Most people affected were wonderful when the position was explained to them. On one occasion I was choosing something in a pharmacy and a young shop assistant was stacking goods on shelves nearby. When I looked around to see why Mary was so quiet I saw to my horror that as fast as the assistant was putting items on the shelves Mary was taking them off and placing them elsewhere. I apologised profusely and explained her position and the young assistant smiled and said it was not a problem because she had plenty of time. I could have hugged her.

The manager of one particular supermarket got to know Mary and her doings pretty well. When we arrived at the check-out he would stroll over, give Mary a smile and a hug and say, “What have you stolen today Aunty Mary?” Then he would reward her with a chocolate which she loved. There are many wonderful people out there and that makes caring a pleasure.

I could go on and on with amusing incidents, but I must just mention one other. A good friend of Mary’s used to fetch her on a Sunday morning and take her to church. Mary loved this and would sit with her blind husband, Dingo, while Louise joined the choir. On one occasion Mary got up and walked out of the church and Dingo was unaware of this. Half the congregation went looking for her and found her a couple of streets distant from the church. Louise recovered from her shock and again took Mary to church the following Sunday, but this time she requested Dingo to hold her hand during the service. I went to fetch Mary afterwards and an elderly lady came up to me and said, “ It is probably none of my business, but I think Mary and Dingo are having an affair, they held hands throughout the service”. She was shocked when I couldn’t resist saying I was delighted to hear the good news.

It goes without saying that there is no cure for Alzheimer’s and conditions deteriorate as the brain shuts down certain functions. This varies with different patients and in Mary’s case it has been a slow but steady process. She required more and more attention and care though and at times this was not at all easy to handle. I reluctantly made a decision to place her in a home where she could have proper care and attention day and night and she has now been in this home just over four years and is well looked after. I still believe she needs my care as well and I see her almost every day and, although she may not always visibly respond to this, in my heart I know she appreciates this extra care from a loved one. She is now virtually bedridden, cannot walk or talk and has to be fed with soft food, but she still responds in her own way. I cannot take her out anymore, or for walks in the garden which we used to do, but she does look content and happy and that certainly makes it easier for me as well. If anything, the bond between us is even stronger and I will love her to the end.

In my previous story about caring for Mary I was limited in what I could say due to publication space. So much has happened, and is still happening, over the years since she contracted the dreaded Alzheimer’s that I feel I must write more in the hopes that others caring for a loved one may benefit or get some comfort.

I made no mention previously that earlier this year Mary had a fall which resulted in a badly bruised face and two black eyes. I was away in the Cape when it happened and got the fright of my life when the night sister at the home where she is taken care of, telephoned to inform me, and I felt desperate and guilty for being 2 000 kilometres away. A good friend went to visit her and put me at ease by telling me that the injury was only superficial and she was in good hands – “A friend in need is a friend indeed”, and how right that saying is. There are wonderful people out there, and I could relax with this comfort. On my return to Nelspruit my very first duty was to visit my beloved Mary and my heart went out to her when I saw what her face looked like.

Shortly after that incident she went into a coma. Shock no doubt played a part in this, but also I knew it was the next stage in this disease with no cure. She was moved to the frail care section of the home where she was taken good care of, but we thought we would lose her then and friends and family were distraught. My daily visits were sad times but also cheerful when I saw and appreciated how well she was looked after, and all the kind phone calls from people who cared were a comfort indeed.

I was told she may come out of the coma but not to put my hopes too high. Mary did not have an easy life in her early years and had many a challenge to contend with. This made her strong in mind though and perhaps helped on this occasion. She did come out of the coma but had deteriorated in that she was now virtually bedridden, could no longer talk and needed to be spoon-fed soft foods. She has now improved even further and spends most days relaxing in a comfortable chair which she enjoys, plus the constant activity in the ward and the special attention she gets.

Her improvement is remarkable and she is now able to take some short walks within the building with the help of a nurse. She enjoys this and has even been seated in the sisters’ duty room with the resident cat on her lap. It is such a comfort knowing that others also care. On a recent scary occasion another Alzheimer’s patient sharing the same ward took Mary walking without the staff knowing. They found the two of them in the dining room, with Joey feeding Mary peanut butter with a teaspoon. Mary was enjoying it too and we can see the funny side now.

On many of my visits I bring her yoghurt which she really enjoys and which is easy to eat. I would feed her a teaspoon at a time, but one day she took the spoon from me and started feeding herself and she does this every time now. It may sound like a small incident but to me it is a huge, exciting achievement which means a lot. She also now drinks her tea and soft drinks by herself and that is amazing after her recent condition. I do understand, however, that it may not be long lasting though as improvement in an Alzheimer’s patient is rare.

When the weather is warm and pleasant I take her out in a wheelchair around the spacious grounds of the home. She doesn’t show it but I know she enjoys it. I show her flowers and pick some small ones for her. She holds them and examines them and carries them back to the ward on our return. There is a bird aviary in the grounds and we spend some time here. She loves watching the activities of the small birds. Incidents like this are occupational therapy for her and I just love helping her in this way.

Three small teddies are constant companions for Mary and are usually seated next to her in her chair, or tucked into bed with her. Someone not fully understanding what Alzheimer’s is about asked if I didn’t feel embarrassed giving her teddies, but if this person could see what pleasure they bring perhaps she would think otherwise. They are fondled and cuddled and she stares into their faces. Of course being nice and soft also helps and the slightest thing my Mary may enjoy gives me great pleasure too.

Something else she enjoys is colourful paintings on cardboard made by a small child. She holds them and gazes at them for long periods. The bright colours are obviously fascinating and this is a joy to see.

Little things mean a lot.