I promised to be with my husband for better or for worse, and I will live by that vow

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. 

PHYSICALLY PRESENT

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.

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.

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.

SUPPORT SYSTEM

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. 

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About Alzheimer’s Disease

ALZHEIMER’S DISEASE, named after Alois Alzheimer, the doctor who first described it, is the most common form of dementia, a general term for a decline in mental ability severe enough to interfere with daily life.

According to Ms Salome Chira, an Alzheimer’s specialist and clinical officer, “The most common early symptom of Alzheimer’s is difficulty remembering newly learnt information because the changes typically begin in the part of the brain that affects learning.” -

But she adds, “Many people have trouble with memory, but this does not mean they have Alzheimer’s Disease. There are many different causes of memory loss. If you, or a loved one, are experiencing symptoms of dementia, it is best to visit a doctor so the cause can be determined.” 

Scientists believe Alzheimer’s Disease prevents parts of a cell’s factory from running properly. They are not sure where the trouble starts,  but just like in a real factory, back-ups and break-downs in one system cause problems in other areas. As the damage spreads, cells eventually die, causing irreversible damage to the brain.There is no cure for Alzheimer’s Disease, but patients can be helped to live with the condition with drugs, non-drug care, support and activities.

According to the World Alzheimer Report 2015, 46.8 million people worldwide are living with dementia. It adds that this number will almost double every 20 years, reaching 74.7 million in 2030, and 131.5 million in 2050.

These estimates are 12-13 per cent higher than those made in  the World Alzheimer Report 2009.

“For 2015, we estimate over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds,” says this year’s report. “Compared to our 2012 estimates, these values represent an increased proportion of new cases arising in Asia, the Americas and Africa, while the proportion arising in Europe has fallen.”

Fifty-eight per cent of all people with dementia live in low- and middle-income countries. This percentage is forecast to increase to 63 in 2030, and to 68 in 2050.

How I found help  

I often browse the Internet as a distraction. One day I googled “memory loss stories in Kenya” and found a woman called Elizabeth Mutunga sharing a story similar to mine. I felt connected and immediately contacted her. She replied the following day and we planned a meeting.

Elizabeth had started a group called Alzheimer’s Association of Kenya. When we met, there were only three of us. Elizabeth told us how her father died after a long battle with Alzheimer’s Disease, while the other woman tearfully narrated how she has been abandoned by her family and community after her mother lost her memory and became a “burden”. 

For the first time I learnt that my husband was suffering from Alzheimer’s Disease. I had never heard of the disease, but today I can tell you how it begins, how it affects the patient, and how it affects family and friends.  

The Alzheimer’s Association of Kenya, which now has 30 members, taught me that I’m not alone, and the members have educated and continue supporting  me. I learnt not to take anything to heart and began doing much did much better. As a result, the burden became lighter. If I don’t laugh, I will surely crumble.

FYI 

Risk factors

The greatest known risk factor for Alzheimer’s is advancing age. One out of nine people aged 65 or older has the disease, while one out of three people aged 85 and above has the disease. 

Another risk factor is family history. Those whose relatives have  the disease are more likely to develop it.

Debunking the myths

Only old people get Alzheimer’s Disease

Reality: Alzheimer’s can strike people as young as 30. This is called younger-onset Alzheimer’s.  

Memory loss is a natural part of ageing

Reality: As people age, it’s normal to have occasional memory problems, such as forgetting the name of a person you’ve recently met. However, Alzheimer’s is more than that. It’s a disease that causes brain cells to malfunction and ultimately die, causing patients to forget the name of a long-time friend, or even the way home. 

Alzheimer’s Disease is not fatal

Reality: Alzheimer’s Disease has no survivors. It destroys brain cells and affects memory, causing erratic behaviour and loss of bodily functions. 

Use of aluminum containers leads to Alzheimer’s Disease

Reality: During the 1960s and 1970s, aluminum was suspected to play a role in the onset of Alzheimer’s Disease, so there was concern about exposure to aluminum through everyday things such as utensils. However, subsequent studies failed to confirm this. 

Aspartame causes memory loss

Reality: This artificial sweetener, marketed under brand names such as NutraSweet and Equal, was approved by the US Food and Drug Administration (FDA) for use in all foods and beverages in 1996. However, concerns were raised about its effects on health. But the FDA says that, as of May 2006, it had not been presented with any scientific evidence necessitating a change in policy. It says its conclusions are based on more than 100 laboratory and clinical studies.

Flu shots increase  the risk of Alzheimer’s Disease

Reality: A theory linking flu shots to a greatly increased risk of Alzheimer’s disease has been proposed by a US doctor in  South Carolina. However, several mainstream studies link flu shots and other vaccinations to a reduced risk of Alzheimer’s disease and overall better health. 

There are ways of stopping the progression of Alzheimer’s Disease

Reality:  There is no treatment to cure, delay or stop the progression of Alzheimer’s disease. FDA-approved drugs temporarily slow  down the worsening of symptoms for about six to 12 months for about half of those who take them. 

Source: The Alzheimer’s Association