In the shoes of Karen… supporting both of my parents with dementia…

Last week there was a wonderful live discussion on the topic of dementia, hosted by Jessica Fuhl, on the Guardian Social Care network.  It is a subject very close to my heart, particularly having experienced both  of  my parents-in-law dying as a result of dementia. The discussion had a very rich mix of “perspectives” but for me the most powerful and illuminating comments came from family members sharing how it feels to “walk in their shoes”.

In this series of occasional “guest blogs” I am therefore very honoured to introduce you to ‘Karen’ (not her real name). Some of you will know Karen as ‘DazeinourLives’ on Twitter, posting regularly “nuggets” of information, moving insights into family life supporting both of her parents with dementia. This post was written shortly before Karen’s father’s recent death.

Background:
Karen expected to return to her palliative care nursing career once both children were at school, but her parents’ Alzheimer’s escalated. For the next three years she was their sole carer. As her Dad’s symptoms advanced, her Mum was unable to cope, even with Karen’s help. Karen  comments:
“The impact on my own complicated family became intolerable, not least for my long-suffering husband. Last Spring, Dad was hospitalised; it became heartbreakingly clear that it would no longer be safe for him to return home. Dad went into a nursing home, and we found Mum part time help at home. Mum’s mental deterioration, which she does not accept graciously, combined with her need to see Dad every day without fail keeps the pressure on…

In my shoes
For the past decade I have been, without doubt, ‘on the edge’.

Being me is about being selfish enough to survive relentless worries about, and the responsibilities I have for people I love, who rely on me. Being selfish enough to protect me from giving up…

My life is also about negotiating with demons. Being me is being trapped under an immense force, but most days at least, finding enough air and strength not to be crushed…but being almost paralysed by the enormity. But not quite paralysed, because of the people who depend on me and who I love. And because of a strength in me that keeps very quietly powering on.

My aim has to be about keeping above, and pushing back the crushing pressure, somehow keeping a thread of optimism and just enough energy, underneath the painful, ongoing losses and realities in my life. Remembering that circumstances could be immeasurably worse, and that for millions of others they really are. The strength in me that keeps me going, and alive is, I suppose, love. Being loved and loving others until it hurts gives me just enough buoyancy to see me through these stormy waters and hopefully out the other side, without completely losing myself on the way.

I manage by acting on passions…passions for fairness, kindness and caring for people in a real, personal and meaningful way. Having a sometimes irresistible urge to solve problems or at least trying to make things the best they can be. Seeking opportunities to help others, even in small ways is vital to balance my own need for help.

My life is also about pretending to be something I am not. Pretending to have confidence. Confidence to work closely with (and if necessary, challenge) authority on behalf of someone else. Pretending to be fine at times when I can barely cope and am feeling as though I am falling apart. Pretending makes it all possible sometimes. By myself I can stop pretending. Having time alone and a place to retreat to every day is my selfish time. It just about preserves my sanity.

My life is about trying to ensure I have practical support and emotional support around me. It’s about having music and laughter in my life (thank you especially to Z for the laughter). My amazing husband, my family and friends and my Focussing guide all help to replenish me and keep sight of myself. My parents have given me unconditional love and support all my life; they gave me my original inner strength. This strength keeps ‘The Edge’ at a safe distance, even though for too many years now it has remained in clear sight.

Although I look enviously at times at others’ shoes, I know that they are probably not quite as comfortable as they seem to be. I know where I am with mine and, battered though they are, they were well made and will, I hope, last the distance intact.

Looking in:

Karen  asked people who knew her well what they thought it was like to be her.

“Hectic chaotic life…both parents with Alzheimer’s and a son with ASD/ADHD…seems so unfair”.

“Life must be a constant frustration.”

“Constantly having to fight with medical staff and administrators who often seem reluctant to help.”

“You must feel as though you are banging your head against a brick wall.”

“…saps your physical and emotional energy.”

“I think it would be very challenging to be in your shoes. However, I think you are very loved and appreciated by your family and friends and you lead a very interesting life.”

“Amazing lady.”

“Whole life seems taken up with concern for your parents and family.”

“You protect those around you from what you really feel and that must be exhausting.”

“Probably very distracted” [Quote by Karen’s 10 year old son with ASD/ADHD]

“Amazing, caring person.”

“If I were you…I would run.”

“You must get up every day, gathering all your strength to remain calm and clear headed, in order to keep your family moving forward together and support them all – who rely on you.”

 “You must have an inner peace and satisfaction.”