Alzheimer's, a life changing disease
by Latoya Burnham
When 77-year-old Isalene Maloney stopped eating and started to lose weight, her children feared the worse. They began to think about the ‘C’ word that no child or parent wants to think in relation to their loved one – cancer.
But an Alzheimer’s disease diagnosis a short time later did not make them feel any more relieved about what was ahead of them. As her son Walter Maloney puts it – in the almost decade since the diagnosis, her deterioration and the toll that has had on the family has made it seem like an even worse fate than cancer.
Walter sits at his paper covered desk at the National Housing Corporation turning a black ink ball point pen between his fingers as he relates his story. It’s a personal ordeal. Moments before the Customer Service Manager had been light-hearted, trading stories and anecdotes as we settled into the interview.
Because of this, his transformation is noticeable. Almost immediately his wide smile goes soft, and his brow pulls into a furrow as he tells of the various doctors’ visits for this close-knit Maloney family, and finally the diagnosis.
It was here that everything changed for them.
“We were told after a number of diagnoses that she was now in the early stages of dementia. One of the most poignant things that ever happened was that I was talking to my mother a day and she was trying to make a point and you could see her battling, trying to remember exactly what it was she wanted to say and then she turned to me and said, ‘Walter, what is wrong with me?’ I said, ‘Why?’ and she said, ‘Something is wrong with me’. That’s all she said because my mother is a very private person,” he says, as his face completely loses all traces of mirth.
This, he says, was perhaps even harder to bear than the time she forgot his name. It’s a reality that the family of six children and numerous grandchildren has had to come to grips with.
But Walter admits, while they seem to be coping, as his sister Margaret has become their mother’s permanent caregiver supported by the others, the whole experience has been an eye-opening but very difficult one.
He explains that growing up their mother was the one person they could always turn to for counsel in times of difficulty, but still yet very private. For him especially, with her progressive deterioration, he has lost the friend he would turn to for just a chat or a laugh, or for more serious discussion.
“You can tell that that part of the brain cells were dying off or something because it became more and more difficult for her to remember stuff. Of course the devastating part is that you go and she can’t remember your name and that is not a very comforting thing for a child.” Even with his sister, Glenda who is in the health care profession abroad, he recalls that for her it was traumatic when the reality of their mother’s condition really hit home.
“One of my sisters was coming home from overseas and I remember I told her Mom is not the normal person you expect. There are some challenges she is having. My sister being a person who is involved in that type of profession said, ‘I understand this. I can deal with it. I see people everyday.’ I collected her from the airport and I said, ‘Remember what I told you.’ When I parked, Glenda got out of the car and ran into the house and gone hugging my mother, ‘Mum-mum’ and kissing her up. When she was finished, my mom just looked at her and said, ‘Who are you?’ and she broke down crying,” Walter recollects.
“It is one thing dealing with something that is not part of you, it is not your mother; but when it is home, your parent, it is not a very easy thing to deal with,” he says, as he removes his glasses and rubs his eyes as if to remove some unseen pain.
With the grandchildren though, there is a difference and he confesses he likes to observe his mother at big family get-togethers. The younger children, he says give him a glimpse of the mother who raised him; her maternal instincts it seems kick in and she lifts out of her sometimes melancholy and introverted state to engage the children and encourage their play.
He recalls a particularly touching incident when his grandson, Chris, and his mother spent almost an entire afternoon playing at counting the number of steps to the house. Moments like those are easier to remember than the tough times and those have been numerous – like when Walter went away to Anguilla. At the airport his phone kept ringing and when he checked, he had missed several calls from his sister in New York. There is very little more startling than to be away and hear your mother has been taken to hospital.
“She said, we were trying to reach you. Mom just fall down in de bath and she has been taken to the hospital. Now, I’m in Anguilla; to get back to Barbados is not like getting in my car and driving from St. Philip to St. James. I have to wait now to go through Puerto Rico and it was a very unsettling feeling, this sense of helplessness.”
Immediately he landed in Barbados, it was a quick trip to his mother’s house, where she lives with his sister, to find her face bandaged, but also realising that regardless of the stitches in her face and the bandages, she could not feel the pain.
It was still far from the last time that he would receive news about an incident involving his mother, but would serve to underscore how important it is to be informed. The family has had to retrofit the house, with things like grab-rails; to make sure any objects that could cause harm or could be use in such a manner are out of reach, and even more importantly, to educate themselves.
From the time she was diagnosed, Walter, who is also a local trade union boss, began reading about what to expect.
“One of the things about Alzheimer’s though and I would advise anybody as a parent that is dealing with it, is to read as much as possible on the illness. It allows you then to deal with the person a lot better. Sometimes you hear people complain that they are miserable, they accuse you of stealing money, and that kind of thing and in most cases when I talk to people I ask is your mother doing things differently? Is your father doing things differently? … [I]s he doing things out of character?
“…The thing is to go and read up as much about this thing as possible. There is no cure but at least it gives you that peace of mind that when you start seeing the different mood swings, you yourself will start to deal with it.”
He pauses with a deep breath as he recalls yet another instance where she fell and hit her face and it was swollen, but she acted as if she could not feel the pain. This in itself was a scary reality for Walter because this now meant that there could be injuries she did not know about because she could not really feel the pain. He explains that the pain has to be excruciating for it to register most times.
Walter recognises that his family is one of the lucky ones – if one can ascribe luck to something like this. Unlike some other families, there is a sister who can watch their mother around the clock as is necessary the further her condition deteriorates; they have been able to pull together financially to look after her and furthermore, with a large number of relatives abroad, they can source some of what they need for her care less expensively overseas. Other families may not be able to say the same, which is why Walter acknowledges that it is hard for him to even think about looking down on those who put relatives with Alzheimer’s in care.
“Anytime we could not do that, certainly as a family and we would meet as a family to make that decision and I would have no issue if my family decided that the best thing for my mom would be to put her in a safe environment that she is going to get the best of medical attention and the best professional help is available because unless you do that they cannot be on their own. You need someone there 24/7,” he says, shaking his head again as he marvels at the fact that his sister, Margaret is able to do it so steadfastly.
“It used to be so that every time my mom moved Margaret would get up with her because you don’t know what is going to happen and it is sad because it had a toll on her as well,” he says, noting that her sleep patterns had to change to regulate with their mother’s, who could sleep two hours and then be up for the rest of the night before falling asleep in the wee hours of the morning, and then there was the constant vigilance.
“I ask God to give her [Margaret] as much blessings as he can because she does a wonderful job. I can’t do it because no one is there in my house and most of the family is overseas and the ones who are here, no one is at home so it is very difficult. At least we have a support group with the family.”
It has occurred to him to wonder about whether there are any traits that would predispose the rest of them to the disease later in life, but he admits this is not something he even likes considering, though he hopes that if it were to happen at least he will be ready financially. Right now, it is all about making sure their mother and grandmother to the children has the care and support she needs.
But still the Maloney family thanks their lucky stars, although Walter says the toll can be a huge one to pay.
“I was telling someone the other day that I think Alzheimer’s may be even worse than cancer. At least cancer, there is pain and when you’re gone, you’re gone, but you can have Alzheimer’s for 10 years, 20 years and just be there withering away. It is a very frightening disease.”