Fading memories

Henriette Lamprecht



She was an extrovert and loved communicating with people, irrespective of who they were. She would not hesitate starting a conversation with a total stranger.

However, as the disease progresses, Julia* (61) still tries to communicate but most of the time no one understands what she's talking about.

She can no longer follow long conversations and if there is more than one person talking, you can see her retracting into a shell and she remains totally withdrawn.

Julia was diagnosed with dementia in 2012 at the age of 56. She and her husband and caregiver, Ben (64) are retired and live in Windhoek. They have two sons. The youngest is in Windhoek, is married with two children, while the other lives in Miami, USA.

It was during a holiday in South Africa that Ben was made aware that something may be amiss. One of his sisters-in-law mentioned that she noticed Julia had become forgetful.

Ben started taking more notice, which led him to have his wife diagnosed.

As one can imagine with the deterioration of the brain, the sufferer becomes less able to do things, even those that they have done most things themselves their whole life, Ben explains.

As time passed, he noticed that Julia required more and more help with day-to-day tasks.

“She had to stop driving early on, and as time went by, normal household chores became difficult. Even getting dressed, even though she tries, is difficult.”

The disease placed a huge burden on their relationship and he admits theirs has gone through ups and downs.

“Through perseverance and our ongoing love for each other, we have managed these cycles. Fortunately, my wife is still at a stage where she recognises family members and enjoys having them around. Even though she can't always communicate with them properly, she doesn't realise this.”

Being her caregiver basically entails ensuring that Julia has the best quality of life during the various stages of the disease, even to the detriment of his own sanity at times, Ben admits.

Julia's dementia medication was stopped two years ago as it was not helping. The couple has tried more than one type of treatment.

Ben says the worst is being totally aware of what the future holds, the inevitable agonising death, as the brain is no longer able to function and the body slowly shuts down.

“As one can imagine this brings about a host of complications for the dementia patient. For example aspiration pneumonia which is a common cause of death for dementia sufferers. This then brings one to the decision as to whether to treat or not treat the condition, bearing in mind that at this stage the patient has no quality of life, which is the main aim for those suffering from dementia.”

Ben and Julia were fortunate that they met a woman at a stretching class for the elderly, who soon became his wife's friend and part-time caregiver.

“This gave me a couple of hours a day to cycle and relieve my stress. It was a godsend. I only realise how much when the person was away for four months and I had a severe increase in stress levels which led to arguments. As a caregiver, one should not do it, but being human this does occur.”

He admits the majority of caregivers are women, but mainly because it is their chosen profession, “even though more women suffer from dementia”.

“One could say that I had no option but to become a caregiver given the circumstances. Being my spouse, I could not abandon her in some institute, even if there was one available, knowing full well that if the roles were reversed, she would be there for me. As the saying goes, 'You can't teach an old dog new tricks', but I can assure you that if you are placed in the position of a lay caregiver, you definitely learn new tricks.”

Referring to the future and whether to have his wife placed into an institution where she can be cared for, Ben says he has been investigating this from “virtually the beginning of the diagnosis”.

“I know the time will come, even though I don't know when exactly. I also know she won't know who I am and that I will not be able to give her the care that she will require and deserves.”

Currently there is really only one place that caters for dementia patients, Alzheimer Dementia Namibia.

“I thank the psychologist who pointed me in the right direction. Whether they will have place when it when we need it, is a different matter. Having read extensively about dementia, I came to the conclusion that you can't place a dementia sufferer in a normal old age home as they require staff who have been trained in this field.”

From a patients' point of view there seems to be a dearth of support for the disease in Namibia, Ben says.

“Just try to find a professional who deals mainly in this disease. Yes, I understand the population is small and this is not always possible. I even approached the medical registrar and they could offer no help. Not even the internet revealed anything when searching for help in Namibia.”

The couple was very fortunate in having a psychologist who helped Julia through the bad times and for this Ben is very grateful.

From a caregivers' point of view, there is a total lack of support, Ben says.

“I even started a Facebook page to see what would happen and only ended up with hits from overseas. It is the caregiver, whether you are the spouse or family member, who has to suffer the trial and tribulations of caring for a dementia sufferer. I can assure you, this is no easy task, especially when you are not trained how to handle the various situations that arise.”

Although articles are available on the internet, they are normally generalised and have to be adapted, but by then it is too late. It is imperative that the caregiver is forewarned of what will arise and how to handle it, he emphasises.

“It is a dreadful disease where both partners suffer until the bitter end and it is made more difficult by the lack of professional help and advice.” (https://alzheimersdementianamibia.wordpress.com; [email protected])