Nairobi News

My name is Susan Mwangi. For five years now, I have been taking care of my husband, who is suffering from Alzheimer’s Disease.

It all began in 2006, when I started noticing subtle changes in Joseph. For instance, I would inform him when travelling to our rural home but when I came back, he would pick a quarrel with me, claiming that I hadn’t told him where I was going. I had sensed that something was wrong for some time, but I put it down to boredom, or perhaps stress, given that we had both lost our jobs in 2002.

In 2008, he secretly went for a check-up and was given some drugs, which I later discovered were for stress. With both of us unemployed, life was getting tough, but then luckily, he got a job in Afghanistan.

He came back in 2009 to take our first born to the university, but I noticed that he couldn’t remember even the names of some close relatives. His condition was worsening; he couldn’t find his clothes, which I not only laid out for him, but also pointed out to him.

Nevertheless, in January 2010, he went back to Afghanistan. By then I really scared and earnestly praying for him.

Then, one night I got the phone call I had been dreading. It was from Afghanistan. The caller said Joseph was sick and needed urgent medical attention. I was told to pick him up at the airport, but with the assurance that he could go back once he recovered.

But the man I met at the airport in October 2010 was a complete stranger: Joseph was a scared, paranoid, skinny shell of a man. He was confused and couldn’t even recognise our last born son.

I took him to our family doctor, who diagnosed him with memory loss and depression. He was put on medication for two-and-half-years, but there was little to show for it.

PHYSICALLY PRESENT

The treatment drained our finances, so I stopped it and tried to find alternatives.

Joseph can take a nap and come out of it as quickly as he fell asleep. Then confusion takes over. He often removes his clothes but has trouble putting them back on because he does not know where to wear each item.  Of late, he seems to have lost his appetite as well.

When my husband smiles at me, I see so much life in him that I just cry.

He is in the middle stages of Alzheimer’s Disease, and we are learning, as a family, to cope with the “loss” of this once bright man.

I can’t visit my friends, go shopping, talk on the phone for long or go to church. I have to be with Joseph constantly; he cannot be left alone, even for a few minutes. Anything can happen as I have seen him try to leave the house half-dressed, leaving the tap running. He has to be fed, bathed and clothed, and has to wear diapers.

Joseph does not talk much; he mostly mumbles, and seems to “talk” more with his eyes. Sometimes he seems to recognise us. I believe he still loves us although we haven’t heard those words in quite a while. It’s like he is here only physically. Occasionally, he will direct deeply hurting words at me in front of the children. I am at a total loss at such times.

We once used to discuss our kids but now he thinks they are babies all over again.

Joseph is a pale shadow of the man I married 25 years ago. Then a healthy man who rarely fell sick, he now has this pallid look that makes him appear much older than his 55 years.

Music is great therapy for Joseph. When I am in the kitchen,  I always play him some hits and you wouldn’t believe the moves he makes. This gives me hope. Hope to see my love smile just for a moment.

It has been pretty hard watching Joseph’s condition deteriorate, but as a family we have learnt to remain strong and to enjoy the precious moments we have together.

SUPPORT SYSTEM

Caring for the man who had always cared for me has been hard to accept and a part of me is ripped apart as I watch my husband slowly slip away.

Meanwhile, I’ve had to endure my own personal heartaches in silence, including closing my grocery shop, losing relatives, and struggling to keep our children in school.

I have no career, no retirement, no plans for the future.

This is all new to us as a family. My three boys are confused. The last born doesn’t understand why his dad went mum and violently chases him away when he tries to joke with him.

Some people have accused me of bewitching my husband, but I take it all in my stride, because I know he is sick. Some family members and close friends no longer visit, but I understand. And some friends have told me to forget about Joseph and remarry since things can only get worse with him but I tell them that I gave Joseph my word that I would be with him always – for better or for worse.

Family rarely calls Joseph; I’m all he has and I give him my all.

It’s very difficult caring for a person with Alzheimer’s Disease, but I am very lucky to have a supportive group and equally supportive church family that visits my husband regularly.

Caring for an Alzheimer’s patient is nerve-wracking, confusing and exhausting. So to those in such a situation I say, face the truth: the person you love will not be back.

If I hadn’t been there, I wouldn’t have believed it myself. Being a caregiver can break you, but it can also make you.

I wish  Alzheimer’s Disease did no exist but since it does, how I wish there was a cure for it.