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The family tug-of-love balance

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Jane's parentsWhen I was asked if I would like to write something about women and dementia, my mind immediately leapt to the tug-of-love that many of us face in balancing our various roles as women in the family.

We are partners, mothers, sisters, daughters, friends and we are ourselves. Many of us find ourselves having demands placed on us to care for a parent with dementia at exactly the same time as we want to enjoy parenthood or grandparenthood. Sometimes this can lead to a feeling of being pulled in all directions.

In December 2010 my mother had a stroke. She made a good recovery physically, but was left with a cognitive impairment which gradually deteriorated. A year after her stroke, she was diagnosed with vascular dementia. As she was losing her grasp on daily life at home, it soon became apparent that my father wasn't able to manage either. An intelligent man, he couldn't understand why my mother wasn't getting better, despite our explaining to him over and over. He missed appointments. He forgot names. He lost words, and sometimes he lost us. Three months after my mother was diagnosed with vascular dementia, my father was diagnosed with Alzheimer's disease.

My parents lived two hours' drive from us, and we visited often and regularly. (My only brother worked abroad). My parents signed Lasting Powers of Attorney and we soon had to take over the reins of helping them manage their affairs. Appointments, birthdays, even Christmas were all forgotten without our gentle reminders. They didn't understand their bills or their bank statements. But with support from a marvellous carer and some behind-the-scenes support from us, they managed well enough to stay in their own home.

My mother's greatest problem was a complete loss of the concept of time. Not just disoriented in time - time had absolutely no meaning for her. As part of that, she was forever muddled about the family tree. In particular, she thought my grandsons were my sons and was always asking me where they were and who was looking after them. I love looking after my grandchildren and often take my grandsons out for the day. It would have been so nice to take them to visit their great-grandparents, but I didn't want to do anything to reinforce my mother's mis-held view that they are my sons.

Then my daughter had her first baby - a girl. She arrived a little early, didn't suck well and was losing weight, causing some concern. There was talk of readmitting them both to hospital. It was a worrying and upsetting time for all of us, but especially for my daughter and her husband. In those first weeks, I went over to their home every day to support them. Some days I went to their home, then on to my parents, then back to my daughter.

Our problems were minor compared with many. We employed a superb carer for my parents, and we had confidence that we could leave most things in her hands. My daughter-in-law had nursed older people and understood the difficulties that Grandma was having. She would ring regularly and tell her about her great-grandsons, and they all visited often. After 3 or 4 weeks, the baby turned a corner and she is now a happy and bonny one year old (though my mother never understood whose baby she was when they visited). My husband was a rock throughout - helping our daughter, supporting his parents-in-law and always there with understanding and cups of tea for me.

Others will face more challenging situations. They may find themselves having to spend long hours caring for family members at one end of the life spectrum, when they would rather be somewhere else. Grandchildren are precious and they are tiny babies for such a short period. It's difficult not to feel resentful if you can't be there to enjoy them. But our parents may also hold a special place and may need support as their lives come to their end. It seems to me that it's usually a woman who is somewhere in the middle, holding everything together.

Jane Gilliard

Tags: carers, daughters and mothers, family, relationships Written 2014-08-04

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