Has your spouse ever forgotten your name?
He calls her “my dear one”. He forgot her name. Like so much. Sabine, 65, gives open insights into her married life since her beloved husband was diagnosed with dementia far too early.
“Life is now” - Jochen was one of those. No life towards retirement, towards “better” times. In his mid-50s, he took on a well-paid job in a company and started his own business. "So that we have more time for each other."
Traveling, hiking, going out with our dog, that was our thing. And celebrations. I look at them often, the photos of Jochen's sixtieth birthday, a few months before everything changed. From the marquee in our garden. The convivial round. Then everything is back. His laugh. Jochen, the charismatic. The solo entertainer. Who he used to be. In the 30 years of our “healthy” togetherness.
It started with a fall down stairs. A brief moment of inattention - traumatic brain injury, cerebral haemorrhage. "Your husband will no longer be the same," said the doctors. In fact, because of the delayed reactions, driving a car or even his job as an electrician was no longer an option.
But I know today that we could have dealt with the consequences of the accident alone. You can also shift down a gear in life. There was also hope that Jochen would regenerate a little. It is different with the breakdown by vascular calcification. There’s no uphill, no hope. You feel how you lose the person you once loved. A little more every day.
The dementia would have come even without the fall. It was a coincidence that Jochen had these failures for the first time about six months later, the doctors said. And whether I had not noticed something earlier. Yes, of course there was, even before the accident. That Jochen was looking for the front door key or his reading glasses. Or forgot a name.
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Indifference to cover up dementia
But who doesn't know something like that? So I played it down if we met old friends while we were out for a walk. "Howdy Jochen" they said. "Howdy," he replied. I noticed his uncertainty. You know the person you have lived with for decades.
One wants, but cannot have it, that he actually doesn't know who he is looking at. "Do you know who that was?" I asked when we were alone again. “I don't care.” “Indifference” winds up my own explanation. Alzheimer's - that's far away. Too bad to be true
Until you have discussions at every crossroads while hiking: where for? With dementia, everything that gives orientation in life diminishes: sense of place. Memory. Interest. No more cheers or screams of despair from Jochen when a goal was scored while watching football on TV.
Only the closest caregivers notice such changes in the early stages. Because those affected are masters of tricks and sophistication. Get beer? "Isn't that a woman's business?" He joked when we sat together in good company again. To cover up the fact that he could no longer find the refrigerator in his own home.
The diagnosis brought clarity
The diagnosis finally came as a shock - and at the same time brought relief because I understood many things better now. I've never been particularly emancipated, the type of woman who prefers to lean on a strong shoulder. Suddenly, however, I had to appear demanding, determined, without any announcements the chaos would have broken out.
Without a shopping list, for example, which said what Jochen should bring from the bakery in the morning. Three rolls, a pretzel, a newspaper. Every day he went out with the same - written - order. If he had forgotten it, he would come back irritated: "What was it again?"
“He has changed” - after a year or two, the others noticed it too. It is noticeable when the “treasure” is suddenly called “my good one”. The facial features seem so strangely frozen. There are fewer and fewer words and reactions.
Time out was necessary
“How do you handle it?” I was often asked - and people keep asking, Jochen has been sick for six years now. What can I say? You have no choice. Takes the partner with you. For shopping, doctor visits, activities, everywhere. At first I sometimes wrote notes: "I'm at the doctor." I pointed to the clock: When the little hand is there, I'll be back here.
Create islands for yourself in this way, friends advised, treat yourself to something, go for a stroll, a visit to the hairdresser. Easy said. When you feel that you are needed. Even and especially when it is the hardest.
Depression, say experts, is the little brother of dementia. No wonder, actually, that the frustration comes with the progressive reduction. About being outside, the helplessness. He doesn't mean you, I comforted myself when Jochen got aggressive again.
Until it escalated. He grabbed my arm: “This is my house! Out with you! ”I called the police. The next day he trotted after me like a puppy. "You have to go to the hospital," I said. Fortunately, a place in short-term care was immediately available - I am entitled to two times four weeks of relief every year. But relief is relative ...
You have to learn to let go first
I know: the disease progresses in phases, it could have happened that way under different circumstances. But the fact is: Jochen has never before lost so much in such a short time as in the last nine months since the stay at home. The language has almost completely disappeared, the gaze is directed into space, he is now completely in his world.
In a world from which you can hardly get him out. Getting up, getting dressed, grooming - everything is a struggle. The four weeks for which I have just brought him into the nursing home for the second time were a must in terms of strength. And again an enormous overcoming. Above all, then, like last weekend, going to the Allgäu with a friend. But where this first happened: short moments without a guilty conscience and without this constant "what is he doing right now?"
Theoretically, it makes sense: I have to be able to be happy, carefree, to recharge, for myself - for us. In practice, however, I first have to learn to let go. A bit like the resolute demeanor a while ago. "Let's go out, let's have a smoke" - sometimes I get him now when I come to the home, where he spends most of the time in bed.
And sometimes, when we sit down on the bench in the park, I give him orientation aids. "I am your wife". Usually something like this remains uncommented. But yesterday it was different. Then he began to stroke my cheek, kissed me.
Kind of childlike, not like my husband. He feels like a child to me when I finally leave. A nurse then takes him by the hand, walks up and down the hall with him, maybe five minutes until he has forgotten that I was ever there. What is somehow a consolation with all the pain: that he probably doesn't know this longing. Which has become my constant companion. I dream about Jochen almost every night. Then he is never sick.
You never forget what you once promised yourself
Paradox: although it will be difficult, I'll be happy when he finally comes home in two weeks. Carry on as long as possible - that's my motto. Take it with you everywhere. Since Jochen has stopped reading notes and there is a "risk of escape", as the doctors say, there is no other way. On the weekends, at least the hard core of the Freundeskreis brings us on board, for excursions or just a glass of red wine.
We know it here: that Jochen is actually only physically present, there is no longer any communication. Unless he has to. Then he gets up and starts walking. Then I follow him so that he can find the way. He can - still - go to the toilet alone. But how long?
Wouldn't I prefer to move him to an inpatient facility now? A friend asked me that recently. Nonsense. Neither wallet nor conscience would play along. Especially not the latter. Jochen was the love of my life. Was - yes, you have to put it that way.
My feelings have changed. Today they have to do primarily with a sense of responsibility and a sense of duty. “In good and bad days” - you don't forget what you once promised yourself. And you don't forget what you had. The only thing that counts is now - this now seems to apply to my husband more than ever. The disease turned his life into a single snapshot. It's different for me: I draw from yesterday. That luckily it once existed.
All articles on the series "Everyday Life with Dementia" can be found here
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He forgot her name. Like so much. Sabine gives open insights into her married life since her beloved husband was diagnosed with dementia far too early.
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