My name is Eva and I am 31 years old, my husband Micke is 41. Part of our family is also our son of 5 years old and two daughters 11 and 17 years old respectively. This is my story about what happens when a close relative falls ill to dementia.
I remember it as if it was just yesterday. The 9th of April 2011 I am sitting on our sofa watching TV when my husband joins me. Out of nowhere he says: “ I have Alzheimer’s disease!”. From that day onward I have carried a pain in my chest and tears that burn in my eyes.
From our first trip from the doctor’s appointment until today there has been an emotional turmoil, with both joyous verdicts such as that my husband will recover and “you should be happy it is not Alzheimer’s, then you would have 25 years of hell” to an actual Alzheimer’s diagnosis. The emotions have ranged from the highest highs to the lowest of low.
In the beginning nobody thought that it would be a dementia disease as Micke was only 39 years old. To hear the doctor say –after one year of tests, waiting lists and waiting rooms- “we cannot exclude early onset Alzheimer’s disease”, the air went out of me. I could feel our dreams disappear and that I would be robbed of the love of my life.
I was very angry with everything, I could not see any hope anywhere, apart from when Micke took me in his arms and said “I’m still here”. In spring 2013 new tests were made and the diagnosis Alzheimer’s disease was made certain. It felt like the last shred of hope was taken from me, whilst Micke felt it was a relief. It was the end of all the tests and the waiting.
You build a family, buy a house and find a husband to build your future with, You think that life will turn out the way you planned it, but when someone pulls the rug out under your feet and tells you “it won’t turn out that way”, everyday life is captured in a bubble.
To be the wife of Alzheimer’s is not easy. It is hard to find the right words to describe what it really feels like. It comes in waves. Sometimes I am strong like an ox, but there are days when I am less strong. I don’t want to say I am weak, because that feels wrong. There are days when I cry a lot, when I can’t resist what I really feel deep down. Sometimes I would like to escape myself for just a moment t so that I could escape my inner sorrow and my worries just to find some peace. It is a daily battle, because my temper is contagious on the rest of the family. Sometimes I feel like I am walking a minefield because I never know when the disease might strike.
Micke and me have always shared everything, discussed all decisions, compared all options. In the beginning it broke my heart every time he couldn’t remember what we had talked about, what we had decided or that he had consoled me, because it became a verification of the fact that the disease really had struck. But today I know that I have my husband in the moment, not five minutes after, but it the moment and I relish those moment because I then have the man I have always had.
I feel worried for the future and what it might hold for me and for the children, but Micke has made me promise to always follow my heart. He says he feel safe to leave the children and me as long as I follow my heart, as I always do what is best for them. It fills me with a sense of security to know he trusts me, because then I know I can do it.
Today we know our time is limited and that we will not get what we hoped for in life, and that I will not hear my husband tell me I am beautiful as I grow older, that I will not hold his hand when he is old. But I know in my heart that he would have said it, I know he loves me. Even if that day might come when he doesn’t remember me, I will remember he loves me.
The first time we said “ I love you” to one another we didn’t use words, we held each others hands when we were visiting a friend in Gothenburg. To hold someone’s hand and feel that he loves you is magical.
I grew up in Malmö. In Malmö there is a lovetree with exclamations of love on it. As a small child I often played by the tree but I never wrote anything on it. That is why we went there and wrote E+M. When we stood and looked at the tree Micke said: “Here we can grow old together. As long as the tree is here, we are too. Our names will stand through rain and sunshine.” These words give me solace, that there is somewhere in the world where we will grow old together.
We have made a testament together, a power of attorney and at the pharmacy we have written in the white register. It has been very difficult to do these things, as you have to think about the next steps when all you really want to do is to not face the future. But we wanted to do these things together as we can console each other and make these decisions together.
Everything we have done we have done ourselves. We have created a photo wall at home with pictures from different things we do, to increase the chances of Micke remembering these memories on his own. We have bought a video camera that with which we record everyday life, for example when there is story time and when the children play. We have a board on which we write if something special will happen so that Micke can read it there. We avoid doing too many things in one day.
Micke has earplugs to soften the sounds around him, a hat outside as the wind bothers him, dimmed light on the mobile because of his light-sensitivity, and supportive shoes to help him reduce the sensation that his brain is bumping as he is walking and shades when lamps are too strong. We try to not use loud voices, because even if we are affected by the disease our children haver regular days like all other teenagers and children. Their thoughts revolve around the disease and how it affects them, for example that a no sometimes becomes a yes and a yes a no just after.
When I notice that Micke is getting worse it is a pain nobody can understand unless they have lived it too, which I wish for no one. A pain that you can’t describe with words. We have made a list over things we want to do together, because we refuse to let the disease stop us from creating more memories from our family. We have tattooed the number 17, which is our wedding day and my husbands fireman number. We have gone on family vacations and we have had our own romantic holiday. In the same way we have done small activities like that, like when the whole family had a sleepover in the conservatory. I gave my husband 100 red roses because I think that is something you should experience. We get dressed up, buy food for the house and dance in the living room. Even if it really hurts later when my husband doesn’t remember it, we still do it!
There are many people who will not experience what we do, a choice on how to spend our time together. We don’t want to look back and feel like haven’t done all we can. I would have done the same thing again – even if the pain and the sorrow eats you up on the inside. Because the love we have I wouldn’t have wanted to live without. That love is ours and still makes us laugh and cry together.
Since Eva wrote this letter in autumn 2013 Micke has moved to a dementia care home for young people with dementia.
Photo: Emelie Asplund
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