I am currently reading Sally Magnussons’ wonderful book “Where Memories Go” (see the book here)
There are so many comparisons I can draw between what happened to Sally’s family and our own. I’m sure this will be the case for many who have experienced the difficult world of Dementia.
Sally often questions whether, with hindsight, she should have done things differently. She particularly mentions her Mum giving an address at the funeral of her friend when she successfully read the speech before her, but then started from the beginning again, without realising what she had done. The Vicar gently guided her away from the microphone and the audience broke into spontaneous applause, but Sally was angry with herself for allowing her Mum to be put in that situation in the first place.
Protecting our loved one from harm and from making this type of mistake is something that is a high priority for those of us who care for a person living with Dementia. Like an experienced parent with a child, we try to anticipate pitfalls before they can happen and thus avoid a problem. In the beginning it can be strange when the person you are caring for is your parent. The roles have to reverse and both parent and child can find that difficult and strange. Eventually it just becomes second nature as you seem to take over that part of their brain for them.
For friends and family who are not the main carer this can, at times seem like you are being controlling. They do not always see the minute detail of everyday living that needs gentle, subtle guidance to keep Mum or Dad as independent as possible, for as long as possible, while still keeping them safe. As main carer you know what effect being out of daily routine in familiar places can have.
Something that would once have been an exciting adventure, keenly awaited, can now cause so much anxiety that you question the value. You know how to recognise that look of panic that others do not see. There becomes a bond between you that is almost telepathic.
The same can be true when dealing with Professionals you encounter along the path that is Dementia. How many times would a question be asked that was too difficult to answer? How many times would you look at me, again with that worry in your eyes, willing me to answer for you? How hard it was not to do it, when I knew this was the only way your condition could be assessed.
Protecting your loved one from both physical and emotional harm becomes a way of life, second nature. It is all consuming and driven by love. Your logical self tells you that others should be able to help you but you just cannot trust anyone enough to share that bond that has made the two of you almost one. This is not about control it is just about Love.
Then enter the Care System….
Much as we see improvements in understanding of people living with Dementia and their Carers there is still so far to go. For me there was a huge stumbling block to overcome to get Mum the care she needed and deserved. I had to betray that trust and allow her to “fail”. This went against everything I believed in.
First the State Mini Mental Exam. I would sit and listen while Mum’s anxiety levels rose to such levels it was not surprising her results were getting worse and worse. In the early days when she was still able to write, the sentence she wrote for the doctor was “This is making me very anxious”. She wasn’t the only one!
I would then be asked lots of questions about Mum’s daily life and the areas that were difficult for her. Describing how she wouldn’t wash or change her clothes, how she found the diazepam tablets we kept for times when they were needed, and took 4 of them without realising. How she could no longer make a cup of coffee or switch on the TV. These were the things I spent my life trying to underplay and stop her worrying.
Saying it out loud, in a small flat where there wasn’t another room to go to felt so wrong. It was the total opposite of everything we tried to do to underplay the problems and just enjoy the living. I suppose I could have asked for another appointment to discuss Mum out of her ear shot but appointments were like gold dust and another delay seemed unacceptable in the time we had left.
Sally also writes about the time her Mum broke her hip and had to stay in hospital. Having an elderly parent in hospital is a frightening time for any family. When that parent has Dementia it is terrifying. Hospital visiting hours may give patients a chance to rest and eat in peace, but for the patient with Dementia, who is normally with their Carer for most of their waking hours, this system is cruel. At a time when they are most vulnerable and frightened, to ban the person who can keep them calm and understand them is unacceptable. It is also the most stressful time for their Carer.
Mum was admitted late on a Saturday night, from her Care Home, suffering from a UTI. She spent 10 days in hospital where she deteriorated to the point where she wouldn’t mobilise and was described as “Very Non-compliant”. Prior to this Mum had always been the happiest, easiest person to care for. As a retired nurse I’m sure some of her non-compliance was in protest at the way the modern system worked!
Eventually, it was instinctively going to the aid of another patient that got her back on her feet and, thankfully, able to return to her wonderful care home.
Once back at the home we arranged a meeting with the GP and between the home staff, the doctor and the family it was agreed that Mum would not be transferred to hospital again if at all possible. The GP would care for her with the help of District Nurses and we all understood what was to happen. Mum’s medication was reviewed and limited to only those drugs necessary to keep her pain and anxiety free.
It may, for some, seem that this last decision was again a betrayal. Agreeing to limit life prolonging drugs would not be for everyone. Yet it was, without doubt, the right decision for us. Mum passed away on 31/1/2013 in the Care Home where she was understood and loved by all. Whatever she did was all right. There was no need to explain as we were all there, together, to protect her.
Watching others following behind with their own loved ones often leaves me angry. My need to protect has transferred to them and theirs. How can our experience help others? What advice can we offer? There are people who make it their life’s work to make a difference to families like ours. I salute you all and offer my thanks. Maybe, should it be my turn, my daughter will have an easier path to travel.
Julie Line (@julieline58) February 2014
Julie’s interest in Dementia began when her Mum was diagnosed with Vascular Dementia. She was her main carer for many years until she moved into residential care for the last three years of her life. Julie was (and still is) very actively involved with her care home.
Since her mum’s death on 31/1/2013 she continue to have an involvement with her care home. She has also been fundraising to create a 1950’s Memory Room for everyone to enjoy.
Julie also works with her brother, John Belchamber, on his website wwww.dementiajourneys.com. Inspired by their own experiences the website aims to share stories and provide support to people across the globe. John lives in Brisbane so it is a real multi-continental effort!
Julie describes herself as
“Ex-carer, early retired, proud Nanny, enjoying travels in my motorhome when possible. Trying my best to raise Dementia Awareness . As Tommy would say “For Mum”