A look inside the Alzheimer world

According to the Alzheimer Manitoba website, more than 20,000 Manitobans have Alzheimer’s disease or another dementia. This number is growing at an alarming rate and within one generation (25 years), it’s expected to reach more than 34,000.  

The website goes on to say, “Last year alone, there were more than 4,500 new cases of Alzheimer’s disease or another dementia in Manitoba. By 2038, this number threatens to rise dramatically to over 9,350 a year. One in three Manitobans has a family member or close personal friend with Alzheimer’s disease or another dementia.”

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Every day my company works with clients who have Alzheimer disease. In addition to my clients living with this disease, so does my own grandmother.  It’s a disease that doesn’t discriminate and once it latches on to a person, there is no getting rid of it.  It can take the sweetest lady and turn her into someone that incessantly repeats herself, throws things at your head and cusses like a sailor.  It robs people of their independence, their concentration and their dearest memories.  Living or working with someone with Alzheimer’s disease is a very hard, trying relationship if you don’t have the right tools to help you along that rocky path.  I encourage families dealing with this disease to contact your local office of the Alzheimer’s Society for guidance, information and support groups.  They’re very adept and knowledgeable people who will give you the education and support that your family and loved ones need.

When I started my nursing career years ago, I recall an instructor telling me that I needed to ‘reorientate’ our elderly clients. Even though my client may have told me that it was 1946, I was to insist to her that the year was 1999.  I remember trying this to no avail, only to have this lady become increasing frustrated and belligerent with me. How I wish I knew then what I know now. I recently read an article by Bob DeMarco who stated, “Reality for the deeply forgetful is a reflection of what the person living with dementia thinks and believes. It’s that new reality that you must focus on, not the way you think things are, or should be.”  

This statement is a real game changer in the way we deal with those living with Alzheimer’s disease or any other type of dementia. Imagine if I would have said to my client that believed it was 1946 something like “Yes it is. Tell me what this year has been like for you?” I’m sure the conversation would have opened up and I may have learned a lot more about this lady then simply being yelled at and to ‘get the hell out of my room’.

Over the years, I’ve worked with many people living with Alzheimer’s disease and have got to develop relationships with their families as well. One of the most common questions I receive is how to deal with the constant repeating of words or questions all day long? The reality is that even though we know they’ve asked us 27 times in the last two hours what’s for lunch, in their mind, they’re receiving the information for the first time, and they’re simply hungry and want to know what’s for lunch. 

This simply happens because of their declining brain function, or as I once told a young child, “Grandpa asks the same question all the time because his brain is sick and he can’t remember simple things that are easy for you to remember.”  

A common issue for those with Alzheimer’s disease is believing that someone has stolen from them, whether it’s their glasses that have been misplaced or the tractor that was sold 20 years ago. In their eyes, this is real and it has just happened. As caregivers we need to remember that our view and the person living with Alzheimer’s view of reality may be very different. But to them this is very real and it has happened.  

When dealing with a situation like this proceed cautiously. If your dad wants to call the police and report his tractor stolen you could possibly try evoking a conversation about that tractor to distract him. Help him reminisce about putting the crop in with that tractor in 1986 or maybe looking at pictures of that tractor to create positive memories and conversation. Often by creating distractions or leading the conversation in a slightly different trajectory can diffuse the situation. If the ‘someone stole my tractor’ is an ongoing issue, then I would suggest you create a small scrapbook about the tractor, including pictures, where it was bought and when and who it was sold to and when.  

Having this information at hand to be repeatedly looked at will help diffuse future situations.

We need to be constantly aware that when a person who is deeply forgetful says something they believe to be true, it’s in fact a reality for them. It is their reality. When they continually repeat themselves, they do it because they can’t remember. There is no sinister plot here. Brain sick, brain not functioning properly. Can’t remember.  This is their world, the Alzheimer world that they live in. I often suggest to families that we can’t change the Alzheimer’s world, but we can embrace it. We can wake up each morning prepared that it may be 1946 and someone stole the tractor. We can take a step sideways and enter their world with them.  

Who knows, maybe the year 1946 had a bumper crop that was seeded with that brand new tractor! Or you can spend the day trying to reorientate someone that it is 2015 and that they sold their tractor to the neighbour 20 years ago. If you choose the latter, I wish you well because, after all, you are trying to do the impossible, you are trying to re-wire someone’s brain.  And worst yet, you are trying to re-wire a brain that has been already damaged beyond repair.  These are two different paths to take, so why not take the easy one?  As a caregiver, you face an insurmountable mountain of stress everyday, so I wholeheartedly suggest you take the easy path, the path to entering your loved ones’ reality, their Alzheimer’s world.  

Don’t be afraid or reluctant to step into this new and very different world. In Alzheimer’s world, reality takes on a completely different shape. Reality in Alzheimer’s world is a reflection of what the person, who is deeply forgetful, thinks and believes. I feel confident when I say this – you won’t be able to convince a person who is deeply forgetful that they’re wrong and you won’t be able to convince them that your reality is the ‘true reality’. 

They simply can’t remember like you or me, and this explains why it’s often difficult, or impossible for them to comprehend our point of view.  When you ask a person who cannot remember to remember, you are asking the person, who is deeply forgetful, to come back to your world. This is something that they simply can no longer do.  

The key to developing positive patterns of communication over a series of situations will enable you to deal with the new reality that is the core of Alzheimer’s world. The more you practice, the easier it will get.  Once you learn how to live and communicate more efficiently in this Alzheimer’s world, it becomes a better place for everyone involved. Before you know it, Alzheimer’s world becomes another dimension in your life. You learn how to operate effectively in this world. Instead of a sinister confusing world, it becomes a parallel universe.

Alzheimer’s disease is not a choice, so please show compassion when dealing with someone who lives with this disease. Be supportive to their families and caregivers by offering assistance, whether it’s a hot meal, an hour of watching their loved one or mowing their lawn. 

Ignoring the person who has Alzheimer’s is not the answer, arguing with them is not the answer, embracing the person that they are now – that’s the answer.  Embrace their reality, embrace the Alzheimer world.

It’s also worth noting the Brandon office of the Alzheimer’s Society will be holding its annual Memory Walk in support of those living with the disease. It will be held on Thursday, June 11 at the Grand Valley Community Church, located off Braecrest Drive. Registration starts at 5:30 p.m. and the event will start at 6:00 p.m. You can register online at www.alzheimer.mb.ca or pledge forms are available to print online.  You can also call them directly at 204-729-8320.  If you’re unable to participate but would like to donate funds, please call the Alzheimer’s office or the Daughter On Call office 204-725-6629 and we would be happy to accommodate your donation.

 

 

Gail Freeman-Campbell, LPN, is the C.E.O. of Daughter On Call, Ltd., a private home care company that provides care to seniors and those with disabilities in Brandon and area.

 
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