My father has Alzheimer's, now what?

My name is Juan Carlos. I am 42 years old and I am the father of two little ones, one of 6 and the other of 3. 

After many doubts, I have finally decided to write a few lines about an experience that has radically changed my life: my father's diagnosis of Alzheimer's disease. I hope that the experiences that have accompanied us these last months will serve as guidance and support to other people who live similar situations, and who may feel overcome and alone before the arrival of this disease.

My father's name is Carlos and he is 81 years old. He is Nicaraguan but has lived half his life in Madrid (a city he loves, by the way). When my mother passed away a few years ago, the two of us were left alone. 

Over the years I became independent and he went on with his life. We saw each other, but less. He was always very reserved and hardly told me anything about his day to day life. I respected his mysterious wanderings because I sensed that they were something important to him. 

Then came the first sign that something was wrong. A call from the Hospital de la Princesa informing me of a suspicion of dementia. My father has always been quite peculiar, and at first I attributed what they told me to his "quirks".

Months later the pandemic struck. 

My father had been living for years with other Nicaraguans whom he took into his home. In the visits I made to him in the middle of the pandemic I perceived new signs that something was happening. I saw a lot of movement, many unknown people, there were no masks, there was no distancing of any kind?

From that moment on I redoubled my presence and I was perceiving continuous failures in my father's (recent) memory. Despite having insisted the day before, he did not remember that he was going to pick him up to celebrate his grandson's birthday. When shopping at the supermarket he would forget what he was going to buy and would accumulate other purchases at home. She didn't remember what she had eaten that day (maybe she hadn't even eaten). He could have a coffee and ten minutes later forget about it and order another one. This all sounds familiar, doesn't it?

As the days went by, I began to get an idea of what was happening. I was faced with dementia with an added ingredient: financial abuse by his environment. The people he was taking into his home, and others I never met, were taking him shopping. In addition, all his jewelry was in a pawnshop, including his wedding rings. Debts here, debts there.... People who were in the house and didn't want to leave.

My head did not stop spinning about a situation that, because of the times and rhythms of our life, I could not, nor did I know how to stop. Depression and anxiety set in. In the end a car accident, the result of my state of nerves and lack of sleep, was what stopped me. I stopped because my mind could not take it anymore.

From there, the leave allowed me to recover enough to move forward on three key fronts: medical, judicial and social services. 

Those of you who have gone through a similar ordeal know well the helplessness one feels because of the slowness of the whole process. The amount of time you have to spend and the amount of documentation and doors you have to knock on. So many doubts... You experience that loneliness of the caregiver that is so much talked about.

Everything is impossible to reach. In my experience, it is good to make a list and prioritize the urgent issues. 

My father with his grandchildren

At the medical level, the worst thing is the months of waiting for a diagnosis. Until then you have to go through a series of tests, which are not always well accepted by our relative. If you miss any of them (it is not uncommon for the person to refuse to go) you know that the process will take even longer. 

With the diagnosis will come the treatment and, in a way, a certain tranquility, since the caregivers see many of their supports conditioned to have this medical endorsement.

In parallel to the medical part, we made progress in the incapacitation process. This usually takes about a year and, as you can imagine, poses a very difficult dilemma accompanied by a certain sense of guilt. Time, which is very wise, makes you see it from another perspective.     

Our first contacts with social services were an ordeal. We had to deal with them to start the process of recognition and assessment of dependency. Recommendation: if you cannot make progress on one hand, concentrate your energies on pursuing other avenues. 

After a trial, we obtained precautionary measures that turned the situation around. We were able to empty the house and secure the address by putting a "virtual lock" on the padrón at the Atención a la Ciudadanía office. There were more than a dozen people registered in a small two-bedroom house. And that's when we were finally able to start thinking about how to organize care. 

It has not been easy. Sometimes, due to lack of knowledge and lack of guidance, you will make false steps. Don't waste energy and time blaming yourself or others. Keep moving forward.

As expected, we have had to deal with Covid. My father has not quite grasped the severity of the pandemic so it has been an ongoing challenge to get him to take the appropriate preventive measures. He has been infected twice. The first time was mild. The second was severe, with bilateral pneumonia resulting from another variant of Covid.  

After a few months in a rehabilitation center, my father is now at home. There are so many pending matters that I try to think only of the day to day.

Another recommendation: give value to everything you have achieved. It will help you to face what is still pending with a different perspective.

And among those small/big achievements: we changed the door of the house, we recovered her jewelry, we paid her debts, we changed her cell phone number to cut off the calls from people who kept calling her asking for money... and importantly, we got help from the social services. Help that translates into a day center three days a week, where he exercises his mind and body, and thanks to which the caregiver enjoys some time off during the week, and it has given me some peace of mind. 

On the financial side, his care takes up more than his pension. Add to that household expenses, pharmacy, food? Yes, this disease is a gigantic financial hole for the family. 

However, today I see him calmer, enjoying moments with his grandchildren, a walk in the Retiro, a morning having his favorite cake in that place he used to go whenever he could? The disease progresses but it is enormously gratifying to see that we still bring a smile to his face, that he sings when listening to a song by Gloria Estefan, Amaral, Perales..., that he is able to recite and move you with his idolized Rubén Darío. How important to give meaning to these lives. 

Today is World Alzheimer's Day. A date on which society is called upon not to forget the people who live with this condition. We are talking about PEOPLE who, despite the disease, can continue to enjoy their lives. The task is titanic and believe me, most of the time we feel very lonely. We need you to push together with us to give visibility and ensure that the relevant institutions and organizations adopt policies that allow this disease to be an acceptable challenge both for those who have it and for those who spend their lives taking care of it.

Thank you for reading me.