"Love and honesty are gifts; albeit occasionally painful. As parents grow older and need help from their children, relationships change, and old conflicts can resurface. But when a parent has dementia, as in my case, the world really turns upside down. Where relationships used to sway in a climate of calm water, plenty of sun, peppered with ups and downs, storms of unknown strength are now increasingly brewing. The climate changes from year to year. The spectrum in our family ranges from intensive, exhausting conversations and situations with my adult daughters and my son, who support, avoid, love and sometimes - albeit well disguised and silently - curse me. On the other hand, there are hours of joy, closeness, togetherness based on respect, honesty, and love. As a single mother, like so many parents, I have been taking care of my three adult children for two decades and more.
Raising children is always very time-consuming and expensive. It requires tremendous strength, mentally and physically. I always wanted to create an atmosphere of trust and security for my children, supporting them in all difficulties, with empathy, understanding and good communication - to be there for them. And whether in good times or bad, my ultimate goal has always been to empower and encourage my children to go their own way and make their own decisions. Of course, I made mistakes as a mother, I am and never have been perfect. Nevertheless, it was always the most beautiful, most exhausting, and most important task for me. It was the center of my world. And we, my children and I, still had so much to do together. But my diagnosis in 2017 and all of the impact it has had on my life and the lives of my children is leaving a mark. Unintentionally and through no fault of our own, there is a new dimension in our coexistence. An ongoing process of change, coping, sadness, anger, resentment, and despair. A strenuous cycle that repeatedly pushes me and my children to our physical and mental limits, to the limits of our abilities and the respective individual will and ability. I was sure that, despite the diagnosis, I had enough strength and mindfulness not to drag my children into the maelstrom.
But far from it! In fact, looking back today, I have to say that we are racing through the years on an unstoppable roller coaster ride. The curves become steeper, the loops tighter, the ups and downs more extreme. Yes, the relationship between my children and I has changed since the diagnosis. We love each other very much, no question! But my Lewy body dementia is now having a profound impact on the way I behave, think and act. I am no longer the mother that I was, the rock, or the first phone number my children call for support and advice. In my temporary confusion, I often act and think like a child; I consciously and unconsciously overwhelm my children, feel treated unfairly or abandoned. "And even though you often don't say anything, mom, I can sense what you're thinking, what you're feeling and that you're not feeling well! ...And the worst thing is, I can't help you…It makes me infinitely helpless, sad." - These are sentences that my daughter said a few days ago in a very emotional conversation. And if I'm completely honest, as time goes on, I think more and more: "Don't I deserve my children to take care of me?! I've been doing this for them for so many years.” This thought creeps in more and more often. We parents have been taking care of our children for many years. Don't we deserve for them to take care of us when we grow older or need care? Why is this mindset that children owe their parents so ingrained in my head? It's my own fears that drive me. Often, I can no longer channel my fear of disappearing, the increasing loss of my independence and autonomy, my frustration, my anger and my own sadness. I lose control more and more and sink into old and unhealthy patterns. I never wanted any of this! And yet it happens.
Children of parents with dementia, no matter what age and no matter how stable they are, always face big, difficult, and very personal challenges and decisions. At the same time, they go through traumatising experiences and they watch their parents change and eventually disappear. This is shocking and highly emotional. You need help to help yourself, e.g., with applications and dealing with authorities, and you need support in everyday life, but above all, you need the right to be able to decide at any time whether you want and can care for a relative or not. At best without guilt and/or blame. Basically, children have not asked for their existence and our years of care as parents. Expecting or demanding an exchange is unjustified and above all unfair. Likewise, children cannot and must not be “generally held liable” when their parents are ill. Despite all these personal experiences of the last few years, I vehemently advocate not overloading an adult parent-child relationship with the ballast of duty and guilt. But nothing is all black or all white, there are grey areas in life. And despite all my efforts and my good will, I keep failing because of my own standards and beliefs. At the same time, I am very aware that more and more things will be beyond my control in the future. I feel very sorry for all children of parents with dementia, but especially for my own three children."
Lieselotte Klotz Pictured: Lilo, with her kids Nora, Carlo and Jill, as well as her dog Dorie
