Most of us will know someone who has been affected by Alzheimer’s Disease, be it a family member or a friend. September is world Alzheimer’s month, the aim is to raise awareness and understanding in the changes in behaviour and memory Alzheimer’s disease can cause, so that family members can feel confident in reaching out and getting the support they truly need for their loved ones.
If you know or are caring for someone living with Alzheimer’s disease or another dementia, you see what daily life is like for them. But seeing something and experiencing it are two different things. What is life really like for your loved one or friend? If we could step into their shoes and see through their eyes, how would our perspective and understanding change?
“Great advancements have been made in the detection of memory illnesses over the past few decades, and because of that, we’re able to diagnose individuals much earlier than before.
Since there has been such a big push for recognition and knowledge of these types of diseases, the stigma around them has lessened and people are much more willing to speak about their experiences. Each person’s journey is unique because these impairments are so complex, but hearing their individual stories helps us paint a bigger picture of what life is like for them – and how we as caregivers can help give them the best quality of life possible.”
Below are some quotes from people suffering the early stages of the disease:
“It took a while for me to come to terms with the diagnosis, and it took a little bit longer for me to start telling my friends and family. Acceptance is something that I deal with every day, actually, because of how things are changing and how I feel any given day. I do have a really strong support system, which helps a lot.”
“Knowing that I have the Alzheimer’s disease is a relief on one hand because I know what’s happening to me, and my wife and I stay on top of any changes in my symptoms and talk to the doctors frequently. But it’s still difficult and frustrating, because I can see how I’m declining, how quickly I’m forgetting, and I know what my future holds. That’s hard for me, but I know it’s harder on my wife and family because eventually I’ll reach a point where I’ll be beyond the point of it bothering me, and they’ll still have to deal with it.”
“My daily life these days is sometimes good, sometimes not so good. When I try to speak, I know what I want to say in my head, but when the words come out of my mouth, they don’t always make sense. My anxiety level is frequently high, and I get stressed out over normal things like going shopping or taking a shower, or even walking across the street. That’s not always the case, but it is scary to doubt myself and my abilities that way. It’s also frustrating to not know things that I know I used to know. I’ll wake up and not know whether it’s night or morning, so I must ask my wife or look it up online. I can’t finish a book anymore and I used to love reading. I can still read short stories and the newspapers, but if I read anything over a few pages I forget the storyline. I appreciate that I can still read, however, and even if I don’t always remember what something is about, at least I know that I was enjoying reading it at the time.”
One of the main focuses of Alzheimer’s awareness month is to change the stigma surrounding all types of dementia. We understand it can be frustrating to deal with someone with memory problems and it can cause great stress within family units. The main things we want you to take away from this, is that they don’t mean it. It can be frustrating when someone is repeating themselves and asking you the same questions repeatedly, you must remember every time they ask or tell you something – to them it is the first time. They don’t want to cause problems or create stress but patience with these patients is vital. All types of dementia and Alzheimer’s disease can be handled better with the correct care and people with the right skills and knowledge around them. Therefore, is it so important to not be afraid to ask for help when it gets too much and to be knowledgeable of the illness and all it can entail. You are not alone. You and your loved ones deserve help, and it is out there if you ask!
If you want to read up on the signs and symptoms of Alzheimer’s please visit www.dementiauk.org
Visit us here or call us on 01628 308 333 to talk about the needs of your loved one and we can arrange the appropriate care for you and your family.
Ellie Chandler
Visiting Angels Berkshire