Dementia - A Personal Story

Judy, an adult daughter and the main carer for her mother, describes what it is to have a parent with dementia and how she is coping with her mother living at home with dementia trained care professionals from Care for Family. Judy agreed to answer some questions for this blog so that others in the same situation do not feel alone. (All names have been changed for confidentiality)

When did you begin to think your mother had dementia?

On reflection my father’s death in January last year was when my family and I realised that something was not right with Mum. For a long time we thought our mother was grieving but it was much more than that. On a visit to our holiday house on the central coast she caught the wrong train. She got off at the wrong station and we tried calling her on her mobile but she did not have it switched on. We were very worried as she failed to arrive on time at the correct station. She eventually arrived – 3.5 hours late. She did not understand that she was late and seemed confused that we were all making such a fuss. She also began falling asleep throughout the day, which is very unusual for her.

Did you seek medical assistance?

Yes. We consulted her local GP for advice and support. The Doctor believed Mum may have suffered a transient ischemic attack (TIA). She was also diagnosed with an Urinary Tract Infection which caused her to become extremely agitated and confused for a period (worse than usual) until her infection was treated. We were also referred to a Geriatrician who did diagnose her dementia.

How are your mother and other family members coping? It must be very hard for you and your siblings to see this change in your mother?

Mum has really drifted away from her former self and it is quite hard to deal with at times. It was particularly tough for her when she had to stop driving. There is a real sense of not only losing a sense of your former self, but also your independence. In the beginning I did not want to accept my mother having dementia. I was concerned she would be stigmatised. It has been a struggle but I am glad she is now being supported by care professionals who are trained in working with people with various forms of dementia and also being taken to day care activities in the community. It’s interesting, as I have found friends to be a lot more understanding and supportive of the fact that Mum has dementia. Unfortunately, my siblings and other relatives have not been as understanding and can lose their patience with Mum at times. Her neighbours and friends have been wonderful and help her with areas she struggles with such as counting money to pay for a coffee at the local café.

What do you and your family members do to support your mother during this difficult time?

We are helping our mum in different ways. We are quite lucky compared to other families in similar situations as we all communicate effectively with one another and all help. My sister Becky (an accountant) manages all financial matters and has been made Power of Attorney. My brother Gerald visits Mum regularly, however he becomes quite impatient with her at times. The girls in the family seem to have more patience. Mum’s behaviour can be quite challenging at times and it has been hard on us as a family. My younger sister Gita is also great for visiting Mum but has been very sensitive to the fact that her children no longer have the Grandmother they grew up with. I am a Nurse so family members look to me for guidance. 

You are very fortunate to have so many siblings to help care for your Mum. Do you think it is important to have a support network? 

Yes indeed. I don’t know what we would do without each other. Sometimes it becomes tough and one of us may become upset and need support, we also need each other to help to continue to support our mum. Even though Mum has all of us she seems very lonely. Mentally she is in a place that no one understands but her, so it is very difficult.

Tell me about the difference Care for Family has made in your Mum’s life as well as your own life. 

I have huge peace of mind knowing that there are trained carers from Care For Family and that we can communicate with the office very easily if we need further assistance. Care For Family has organised outings and daily activities for our mum and at this moment we are really grateful that mum is willing to attend these arrangements. Mum feels secure in her own home and when the competent care professionals arrive her mood is uplifted as she has a real connection with the two ladies who attend to her needs 7 days a week for 8 hours a day. It is great comfort and support for her and also very comforting for me and the rest of family.

At times we have needed extra care, especially on weekends when family have not been able to visit and Care For family have placed their caring workers for some extra hours at very short notice. It is not always easy having our Mum live alone, but it was always her wish to remain in her own home and not be placed into a residential facility. It is wonderful that we have such caring professional support from Care For family to honour her wishes.

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