Managing My Life With Alzheimers

In August 2013 at the age of 55, I was diagnosed with Progressive Degenerative Impairment believed to be Early Onset Alzheimer’s and Fronto-Temporal Degeneration/Dementia (FTD ). I still remember the horror and fear as the doctor gave me the diagnosis and said, “Get your affairs in order and go see an Elder Care Attorney.”

No hope, no support system or suggestions on how to adapt – simply a death sentence.

Over the past few years, my husband Roy and I have learned that currently there is no hope for a cure. However there are many support groups and with constant adjustments, I CAN live a happy and beneficial life. Together, we can improve our tomorrows by modifying today.

In many cases, something triggers a dementia reaction such as confusion, disorientation or an emotional melt down. Together, Roy and I work hard to identify the obstacles that cause our challenges and then figure out what adjustments will get us around that barrier. We don’t automatically accept that I CAN’T do things anymore; instead we try to figure out HOW I CAN do them.

Adjusting to overcoming obstacles is a very time consuming and frustrating process, but it comes with tremendous return. It takes work! In order to overcome an obstacle, one must first identify the obstacle. Roy and I have a process we work through to help us figure out what triggers my dementia reactions. Here’s a look at the process we call the “Dementia Daze”:

1. Roy tries to observe what I was doing prior to the Dementia Daze. 
2. When I am able, we go to our designated quiet spot and discuss what happened, what he observed and how we felt.
3. We try to determine what started the confusion. Was there a specific trigger, conversation, event or emotion?
4. Then we try to think of adjustments we can make to the situation in the future.  
5. Testing – we test our theory and make changes or go back and start again.
6. We try to share success with others in hopes that our adjustments may help those experiencing the same issues.

Here are some of the tips Roy and I have implemented to avoid or minimize the “Dementia Daze”:

1. Maintain as much of a routine as possible (especially morning and evening). Make a list of routine tasks in the order they are done and check them off as completed; i.e. scrub teeth, get washed, get dressed, etc.
2. Identify things that cause agitation. Many times, something triggers dementia symptoms causing confusion or agitation. Take time to observe what the surroundings and events were prior to the agitation and try to identify what may have caused it. For example, was there a lot of noise, did someone have an argument, or did their surroundings change?
3. Embrace and encourage abilities rather than focusing on inabilities. Like a set of lights on a Christmas tree, parts of our brain flicker on and off. There are moments of lucidity and moments of confusion. Tasks may be easy one day and difficult the next. Build on the strengths of the moment.
4. Engage in activities. It is easier to sit idle and go into a shell than it is to stay active. As with anyone, our brains need to be stimulated and challenged.\
5. Stay as independent as possible. The more independence you give up the more dependent you will become. There will be moments when some guidance is required to complete a simple task, but work through it as much as possible. 
6. Maintain social activity as much as possible. This is important for care partners, as well as the person living with dementia. The internet has a number of social groups for care partners and People Living with Dementia. Video chats, forums and mentor programs are wonderful ways to learn best practices for dealing with dementia symptoms.
7. Communicate visually as well as audibly as much as possible. Dementia slows down processing time. Therefore, being able to see and hear helps clarify the communication. Some ways to increase visual communication are using video chats rather than telephone, writing down tasks and asking restaurants for a written list of specials.
8. Understand that dementia does not necessarily make a person hearing impaired, and in some cases hearing becomes stronger. Always carry headphones or earplugs to help filter background noises. Busy places like malls and restaurants can cause a quick decline – be prepared!
9. Go to restaurants during the off hours and wear earplugs to reduce the background noise. The noise of dishes and silverware clanging and multiple conversations can become overwhelming and confusing.
10. Hang clothes with one outfit together, rather than pants on one hanger and shirts on another.  Mornings can be rough. Trying to determine what clothes go together can cause confusion and frustration, which can set the tone for a challenging day.
11. Take many pictures and review them often – talk about them with others.
12. GET INVOLVED – helping others is the best way to help yourself!
13. Start every day with gratitude. A positive morning can help reduce stress.

It is difficult seeing myself become less responsible and more dependent. It is frustrating when confusion takes over my ability to reason, think, communicate and comprehend. I am still Laurie; however, I am different – I am changing. And with change comes new challenges. With each new challenge we take time to look for the obstacles that may be causing confusion or a decline in behaviors. There is not always going to be an answer or an adjustment. Sometimes we need to accept that this is the new normal, but sometimes there is a resolve! And often, the modification is as simple as wearing earplugs!