Friday, December 15, 2017 – I previously shared about a wonderful Closed (you have to be a member to comment or see the discussions) Facebook group called Memory People. One of their Facebook pages is open to be read and shared. And I will be sharing! Most dementia groups are all about the caregivers. Since this one has both dementia folks and caregivers in it I think the information is extra helpful.
This is from their Facebook page:
Memory People™ is an Alzheimer’s/dementia and memory impairment support and awareness group on Facebook providing support, assistance, information and help for this journey 24/7.
Memory People™ was created by Rick Phelps, diagnosed in 2010 at the age of 57 with Early Onset Alzheimer’s Disease. Rick saw the need for real-time support for all who have found themselves on this journey of dementia, patients, caregivers, professionals and health care workers.
The following article was written by Rick Phelps and caught my attention as something I need to share with others. I plan to share more of the insightful things that Rick (who has Early Onset Alzheimer’s Disease) shares with this group.
Rick also wrote a book with the help of someone without dementia, called “While I Still Can” which can be seen by clicking on the book below.
Patience we are told is a virtue. The ability to wait for something or someone, without getting angry or upset is a valuable quality in a person.
This phrase was first written and recorded in 1360. So, it’s been around a while. Far longer then when Alzheimers was first discovered by Dr. Alois Alzheimers in 1906.
There are many things one must do and be while caring for a dementia patient. Patience is right at the top of the list.
Daily I read over the posts in Mp. And everyday without fail someone‘s patience is being tested by their loved one.
And almost 100% of time the caregiver wants to know what they can do to correct whatever behavior is being acted out.
This is because from a very early age we are taught and led to believe that there is a “fix” for literally everything. A reason, an explanation, an answer.
All one needs to do in most cases is understand what is going on, and correct it. Perhaps it’s a process of elimination in some cases.
Whatever the issue, there is an answer, a “fix” to whatever comes up. That is except for dementia. And this includes any type of dementia.
The person who has dementia has one thing in common with other patients. They can no longer think as they once could.
Their brain doesn’t react as those who don’t have dementia does. We lack the ability to make rational decisions. We lack the ability to remember things. And we lack the ability to explain to anyone why this is happening.
These are just three examples of what we lack. There are hundreds more and each of them range from subtle to severe to different patients.
Depending on when the dementia started, where it started, and how it has progressed. Personally I can make sense about 60% the time. It’s the other 40% that is the issue, and not being able to control when one can and cannot make sense is a huge issue.
I may make the most rational decisions this morning, and not be able to make any type of decision in just an hour or two.
Sadly, in time, all of our decision making is gone. This progression is slow in most cases. How fast one progresses is an educated guess at best.
The only thing caregivers need to really understand is we have trouble making decisions. Real trouble. And when we make bad decisions as in being belligerent, abusive, or just do things that are wrong, the caregiver always questions why is this happening and what can I do to prevent it.
Which leads right back to what I was saying about we have been taught that almost anything can be “fixed”. If we‘d think about it, we would know this isn’t true.
Sorta like the child who is never told no. Goes about their young life just doing what they want, when they want. Then one day reality hits, and someone, somewhere tells them no.
They just have a meltdown. The mere fact that someone would tell them know never entered their minds. This is what it is similar to when someone is diagnosed with dementia.
They have went their entire lives making decisions, and one day that ability is no longer with them. They can’t comprehend what is happening. And some just keep making bad decisions because once again, they cannot help it.
This is where patience plays a huge roll in being a caregiver. What occurs sometime dozens of times a day with a patient, will because they don’t have the ability to change what they are doing. To make better decisions.
So, the caregiver instinctively tries to “fix” this or ask others what they do to “fix” this. It’s normal. Something isn’t right, you find a way to “fix” it, or ask someone to help.
You have to get away from this type of thinking. You have to realize that what is happening to your loved one is out of your control. If you think I am wrong, then why doesn’t your love one stop making bad decisions all the time? Why do they constantly do the most absurd things, over and over and over? It’s because they can’t make rational decisions.
You obviously need to stop a patient from doing things that would put them or others in danger or hurt themselves or others.
But like the child, you must constantly be watching and trying to stay on step ahead of what may happen. Again, patience is the key.
The reason patience is the key is 99.9% the time nothing you do will work. Take arguing with a dementia patient. It is a total waste of time. Once a dementia patients mind is set on something, you aren’t likely going to change it and arguing is just like going around in circle.
It doesn’t do you or the patient any good to argue. They will because they make bad decisions. They decide for whatever reason to argue over things that they are totally wrong on. But not in their mind, and that is all that matters to them.
Shadowing is a perfect example. How do you get a grown person to stop following you every minute of every day? Follow you from room to room. You can’t get five minutes alone because you are being followed by them no matter what you say or do.
What can you do to “fix” this? The answer is have patience. Because the only way a patient will stop the shadowing is if they move on to some other symptom of this disease. Even then for whatever reason they may return to shadowing you.
Hoarding things is something else you won’t be able to “fix” that requires patience. I have went over this as a patients perspective and have said many times that patients are not actually hoarding anything.
To do this, they would have to make the distinct decision to take something and put it somewhere, to retrieve it later. And this just doesn’t happen. What they are doing, what I do is much simpler to explain.
I am simply putting things back where I believe they belong. If you find silverware in the linen drawer, it’s because that is where your loved one believes it goes.
If you find the milk in the cupboard, if you find left over food in the bathroom, or if you find your jewelry in the oven, again it’s where these things belong.
And what can you do? Patience. It’s easy to try to explain to you to have patience with your loved one, it’s very hard to do when they are up for the fourth time in the middle of the night, with them just walking around. For no reason what so ever.
There is nothing wrong with asking what you can do to try to stop some sort of behavior in your loved one. We do it here on Mp each and every day. However, being told to have patience is rarely seen as the answer.
If we as a society would put as much time into having patience as we do in trying to “fix” or stop whatever is happening, you would find it easier.
Would this solve all the issues you deal with on a day by day, or hour by hour, basis? No.
For this, you need patience, as well. I had to write these thoughts down many times to get them to come out right. That I did with patience.
© Rick Phelps 2017
Ya’ll come back now, ya’ hear!