The power of an Alzheimer’s Support group- The Kenyan story

Elizabeth Kasimu Mutunga’s Story

Alzheimer’s patients have issues with memory loss, thinking, recognition, language, planning and their personality deteriorates with time

Elizabeth Mutunga is one of the caregivers who was affected by the disease. She was among the initial group that started the support group. In 1992 after she had completed form four , the family realized that there was something wrong with our Dad. Dad had reached 65 years and he was sent on retirement. This is when we noticed there was something wrong.

By this time I was just 17 years and she had to go and fend for her family as her father was not on employment. I had to ensure that my siblings went to high school being the first born. My immediate follower was in form 2 and the last born sister was joining form one. By then Dad was suffering from Memory loss, had problems with planning and thinking difficulties. Therefore, trying to inform him that the last born needed to go to school did not make sense to him. As a family we did not understand that he was unwell as we had not heard of Alzheimer’s Disease before.

We tried to involve all the people we could namely:- relatives, friends, the church. Dad would convince them when they came to speak to him and inform him of what we had told them, he would counter our accusations and inform them how bad we were and they would believe him. He would tell them how we were disrespectful children. Since no one understood what we were going through we were so mad with all the people who would take sides with him.

When the family was informed about the disease I started looking for a support group as would be the norm when you are informed that your loved one has been diagnosed with a terminal disease. There were not groups on the net. This is when she realized that there was no support group and she started reaching out to people who would be of assistance to her to set up one

I have realised the power of a support group. Though I did not join one I started one …. There are times things happen to you so you can help others … I am glad now I am able to reach others to give them hope

Alzheimer’s caregivers – it is time to stand up and be counted.

The other day as I was going around speaking to caregivers who have loved ones affected by Alzheimer’s disease I posed a question … Do your neighbours know what your loved one is suffering from?, the church congregation, all family members? and the answer to all the questions was NO. So I asked why not… the response I got was that it is difficult to explain what our loved ones are suffering from and also we already have been labelled as a family that has someone who does not have a stable mind. In Kenya it is know that mental diseases are “most feared” and thus most families are hiding their loved ones either literally in their homes or by not giving information to people around them

Most of the caregivers have suffered from stigma and the only way the stigma can stop is by talking about what we are going through . For example when we take our loved ones to the hospitals do we inform the doctors or the nurses that our loved ones are suffering from Alzheimer’s? There is an advantage in letting people know what our loved ones are suffering from. We are able to get more people to rally behind our cause of educating the public and thus creating awareness about the disease. This will lead to a communities that are dementia friendly and people will be all around us ready to assist. we therefore must come out of our comfort zones and start speaking. The more we talk, the more people will be aware and the more will offer resources, time and the help that we require.

The other diseases that are given a priority in Kenya are having the media coverage and sponsors because someone dared to speak. Yes in the beginning you may be demonised by family and friends but it will be worth it. As one day we will look back and we will be glad that we spoke .

Alzheimer’s caregivers it is time we stood up to be counted.