Lieselotte "Lilo" Klotz, member of the European Working Group of People with Dementia says striving for a life worth living is worthwhile and for as long as possible!


The diagnosis "dementia" at the end of 2017 tore me out of my active and successful private and professional life. I, who have always been in the thick of things: in private life, at work, in politics, in voluntary work, as a caring relative and in many leisure activities, have not only had the bitter, personal experience of having dementia, but also that knowingly or uncertainly, people withdrew from my environment as soon as they heard the word "dementia". It felt like a crash landing with no parachute or preparation. My life has always been shaped by strong emotions. Positive and negative and in different intensity levels! Feelings are always personal and always individual. Joy, sadness, anger, fear or doesn't matter, at all times feelings have helped me to deal with my deep desires, needs and disappointments and so on. This did not change in 2017 with the diagnosis of dementia. I have experienced and survived suffering and loss of loved ones and acquaintances, abuse, separation, divorce, loss of property and other threatening circumstances. Slowly but surely losing myself and my "being" was an experience and prospect of an existential loss of unprecedented proportions.

From 2017 to 2020 I went through all known phases of grief in a depth and intensity that I had never experienced before:

• Denial: This can't be true!

• Anger: Who is to blame?

• Negotiation: How to make amends?

• Depression: I can't avoid it, but I can't take it either!

• Acceptance: I accept the situation and try to make the best of it.

Feelings are even more relevant to me since the diagnosis. Above all, sadness and joy! It feels like I am on a roller coaster. Loss of zest for life, deep despair and helplessness, anger and resentment were my constant companions in the first three years after the diagnosis. The grief gripped me emotionally, spiritually, socially and physically; and like so many people in our society, I was unprepared for this grief and often found myself in a repressed emotional state. My mental balance was massively out of whack. Although this fundamental grief over an incurable illness knows no end, my emotional and physical pain in this regard have changed significantly in recent years and today, I have learned to live with my pain and I know that I am not alone. I can deal better with this "creeping farewell" to so much and eventually to everything; even death no longer scares me. With the help and support of people who always love me and are still with me in my life, I can enjoy the precious time that is left to me most days, despite dementia! In addition to my grief, life has gradually created more space for me. For me, life means my children, family, friends, people who accept me as I am in the here and now. I'm grateful for the little things, I'm happy about every day when the sun shines on our world and in my heart. Then I'm fine! I volunteer with people, for people who, like me, have dementia or a disability. That encourages me and gives me strength and confidence. Even if things don't always go perfectly, striving for a life worth living is worthwhile, and for as long as possible!