The Rocky Road of 24/7 Care

Self - Understanding and Co-operation Suffice it to say that this journey as a carer cannot be “put in a box”. All carers will be experiencing their own Alzheimer’s road. That being so, there are however, certain common emotional agendas that take place on this journey; It is my goal to help you face and deal with your emotions from a viewpoint of learning experiences to help with each stage of the journey and facilitate some amazing personal growth. You see, I do firmly believe as I said earlier in choices in life and on a carers journey one has a choice as to how to deal with the challenges that come along. All experience can be a valuable lesson that we either learn from and search for the positive within it or stay in the victim mode mentioned earlier. I can assure you that on my own journey to my husband’s latter stage manifestations, I have been to the depths of despair and sorrow. My greatest help has come from the inner power that lies within us all that is waiting to give us a sense of inner calm and inner peace. Allowing that energy to help me face the changes and challenges head on. It has meant consistent practice of drawing on that inner strength and not allowing a victim mentality to lead the way. I made a conscious decision early on when my husband had been admitted to Princess Christian to become friends with the staff. To work with them and encourage them in the great job they do. It takes special people to give from their heart twelve hours each day without showing any sign of frustration at repeated agitated and frustrated behavior from the residents. This is what happens in the Care Home, and I am truly grateful for love and friendship shown to the residents and also the relatives. As carer, it takes courage to choose to be an observer of what might really be going on when visiting rather than reacting to what you see at face value. Let me illustrate this for you – Maybe like myself you have visited your loved one, only to find they are not shaved or properly dressed and hair looking unkempt. An immediate reaction could be to ask who did their personal care and why they are not properly dressed. Even wondering why they are just sitting in a chair and doing nothing. Having been “the other side of the fence” probably helps my approach, but my reaction would be and still is “he must have been challenging with personal care today and not wanting to join in activities!” OK, the staff have special training to deal with challenging behavior which will not mean that resident compliance is always going to happen. I know that with my husband, as with all the residents, they look for the best time to get maximum compliance with daily personal care and will try to encourage some degree of independence wherever possible. Sometimes when visiting on a “minimum compliance day” a carer will approach and say “Sorry, Brian is not shaved properly today, but it was difficult to get his co-operation”. My response – “I gathered that when I arrived. It’s OK, I know you are doing your best with his care and that at times it will be challenging for you.” On a good day for him he is shaved, hair looking great and clothes wonderfully coordinated. In the earlier days they involved him In the choice of clothes, which was great as has always been a smart dresser with good colour coordination sense. One tactic used by one of the carers he had really bonded with, was to say to him “Brian, I have some lovely new clothes I would like you to try on for me” “Really!” would be his reply and immediately he would cooperate! From a relatives perspective it is SO important that you give as much information as possible to the staff about your loved one to assist them in giving the very best standard of care possible. Of course, we must rule out the fact that as Alzheimer’s neurons more and more kick in, then some past patterns of preferences may change. Let me illustrate – mentioned in the first book but no harm in repeating it for you. For many years Brian was a coffee drinking man who had trained himself to indulge without sugar. He would drink coffee as his main drink each and every day. Imagine my surprise on an early admission visit, when I saw a carer making him a cup of tea with two sugars!! “Is this what he likes to drink?” I asked with a surprised voice “He’s always been a coffee man”. “Oh no! He now likes his tea plus two spoons of sugar!” was the response. What has also been interesting is that a drink of tea became a great distraction technique when I needed to leave, especially when he was manifesting agitation and angry frustration behaviour. I had more than likely stated on his admission his preference for coffee! Oh well, all part of the journey! The more, as a carer, you can allow yourself to learn to be accepting of the day to day manifestations of the persons symptoms, as well as the changes, it will help you cope with the emotional part of your journey. How many times have I asked myself this question – “I wonder what is Really Going On in his brain and mind? How Aware Is He of what is now happening to him?” Maybe you ask similar questions as you try to sort it all out in your head. Let me share with you here that although I tell myself that there is no point in trying to figure it all out and just deal with each new bit of the journey as it manifests, I still have moments of wondering, especially when he has moments of complete clarity.