Her mother who is in her mid-eighties and who lives alone some distance away, is showing increasingly challenging and difficult behaviour, with forgetfulness, surprising mood swings and aggression. She may or may not have a dementia, although the signs are that she probably does. A specialist appointment is due shortly.
My friend is anxious and worried and would like to do more to help, but she finds her mother’s behaviour frustrating and that it is shutting her out. As much of a challenge, her own partner requires round the clock care as he has a long-term chronic illness. When a loved one develops dementia, those closest to them are likely to experience feelings of confusion themselves, as well as grief and bereavement – even before the person dies, as the illness progresses.
As many families will attest, no sooner have they come to terms with one stage of the loved one's illness than their behaviour changes or their abilities decline further and the grieving starts all over again.
A sense of loss is one of the most powerful feelings that people experience when someone close to them develops a dementia. My father spoke about this with me on a number of occasions during the ten years that my mother had Alzheimer’s disease and vascular dementia. He said that he felt he had lost the person he had married in 1940, not to mention the future he and she had expected to spend together. He was mystified by the changes in their relationship they had once shared, and missed terribly the long years of companionship, support and understanding they had enjoyed. But he was clearly frustrated that his own freedoms to travel and do the things he enjoyed were curbed and worried a lot about the cost of her ongoing care and how it would impact his own old age.
As much as anything, he found it very difficult to adjust to a lifestyle that was so very different from the one he once took quite for granted.
After a while, my mother was admitted to a care home and my father became ill himself and died three years before she did, in our family home that for him had become just an empty vessel with only the ghosts of a former life, for company.
Of course my mother’s life was hardly better, coping with life in three different care homes, in the company of strangers. As a family, we all did what we could to support them both and Many Happy Returns was borne out of my own personal experience of her care.
In the very earlier stages of my mother’s dementia, when she had a series of mini-strokes, it was obvious that my father was both in conflict with and also in denial about my mother’s condition. I saw how he coped, using his long experience as a GP, but I also saw how this experience hardly helped him on an emotional level, as he tried to suppress his conflicting feelings. He had gone through the war as a field hospital doctor and the experience coloured his whole life after. And like many of his generation, he was a stiff-upper-lip kind of man.
Later on, he was more accepting of the situation and there were times when he coped rather better. He certainly did try to make the best of things. But then at other times, he clearly felt utterly overwhelmed by sadness and anger, numb even. I noticed his resentment over the constraints on his own life and his unhappiness that things had not turned out as he hoped. Although he never would have said it, I sometimes sensed that he thought it might be easier if my mother were dead.
Of course, now I know a lot more about these things, I realise that these feelings were a normal part of his grieving process. But my father just didn’t recognise until much later that he was under a great deal of stress. He needed more emotional support but did not know how to ask for it. Talking about his feelings with friends and supportive members of the family helped him a little. But even so, he would bottle up his feelings. He started to cry a lot.
I encouraged him to spend time with his friends and he did see his ex-GP partner from time to time – although being a proud and private man, I doubt he shared very much. He often looked very tired and sad. He said that sleep often alluded him and I worried that he might slip into depression. He seemed to feel guilty about considering his own needs. When my mother went into long-term care, his relief was palpable. But the decision split the family. Those of us who supported the decision felt awful guilt and my father clearly felt empty and exhausted, both physically and emotionally. He tried to muster his old energy, but without his wife of sixty years, he gave up. A few years on, after a short illness, he died. “Who’s in that box?” asked my mother at the funeral.
Three years later, she slipped into the final stages of dementia. She couldn’t communicate with us, and only recognised my sister and me. I found all this painful but it was worse for our brothers who she seemed not to know at all. But although all our relationships with her were nearly over, we could not mourn fully because she was still alive.
I made her a chronological, autobiographical life story album with family photographs, which she always loved. Increasingly when I visited her, we would just sit quietly looking at it, or do no more than look out at the world together, holding hands. The time seemed to fly by, even though we were doing no more than being in each other’s company. Like everyone, I just did the best I could.
They say that people who have loved ones who die with dementia may find that they have grieved so much during the course of the illness that they have few strong feelings left when the person dies. Others experience numbness; an inability to accept the situation; shock and pain (even if the death has been expected for a long time); anger and resentment; guilt over past incidents; sadness and feelings of isolation or lack of purpose. The overriding feeling I experienced was relief, coupled with sadness; relief that the terrible hardships that dementia imposes were over for her, and sadness about the way the disease insinuated itself in so many destructive ways on all our lives.
In the last few days of her life, I saw how my mother’s quality of life was being fast eroded and found myself almost ‘willing’ her to die. She did it in her own time, as she always did.
That was two years ago today, but I often still feel the void. The family, whom she and my father loved so much, has never recovered. Luckily for me, I have my own loving family and plenty of supportive friends. My friend will doubtless encounter some of these experiences over the next period of her life and I will do what ever I can to support her.
The Alzheimer’s Society suggest the following helpful tips to people in a similar situation to my father’s:
Try to take it easy until you feel your energy levels rise again.
If your daily routine previously revolved around caring for the person, giving a structure to your day may help you get through the difficult early months.
If you still want to be involved in caring for your relative while they are in care, speak to the staff and explain exactly what you would like to continue to do for them.
Don't fall into the trap of building your life around visiting the person in their new home. You need to build a new life for yourself that includes these visits.
Remember that there is no 'right' or 'wrong' way to feel. You experience your own feelings in your own way, and no one has the right to tell you how you should feel.