10 Life Lessons learned from my Mother’s dementia journey

Posted on June 22, 2014 by - Uncategorized

My Mom was diagnosed with Lewy Body Dementia at the age of 61. She lived with the disease for four and a half years. I was there with her, as her caregiver. I was there with her when she died. And I am a different person because of that journey. I learned so much about caring for people with dementia, many things that can be carried over into everyday life. Here are 10 of those life lessons. Thanks Momma.

A Approach the person with dementia slowly, with a smile. Be positive, make eye contact. Because of what’s happening in their brains, they often respond to your essence and body language before they can comprehend what you are saying.
In life, approach a person slowly, with a smile. Be positive, and make eye contact to establish trust. You never know what’s happened in their day already. Make this encounter a good one.

L Learn patience. It can take someone with dementia longer to answer your question, do something you ask them to do, or make a decision. You have to breathe, and be patient and wait for your answer. If it doesn’t come, don’t keep hammering them. Re-ask the same way once, then move on.
In life, try to breathe and be patient. Driving behind someone who goes too slow, in line at the grocery store behind someone who counts change. Take a second, it’s ok. Things will get done.

Z Zzz’s. Let someone with dementia rest. This disease is exhausting. If they want to take a nap mid-morning, let them. Their bodies work differently now.
In life, you need your rest too. You will perform better, be in a better mood. My Mom used to say if you are having a bad day, take a nap or go to sleep. It will all be better in the morning.

H Go to their happy place. Short term memories fade in the mind of the person with dementia, many long term memories remain. You can talk to someone with dementia about the war, their wedding day, their 13th birthday party, but they probably won’t remember what they had for breakfast. Talk about old times with them, especially when they are agitated.
In life, go to your happy place, especially when you are agitated. Seek out a happy memory, do a bit of deep breathing, realize this moment is not the end of the world. There are bigger things out there, and this moment will be over soon.

E Enjoy the moments. In mid and latter stages of dementia, people go in and out of lucidity. You should grab those moments when your loved ones are present, laughing, engaged and let those moments fill you up. You feel like for a moment, they’re “back”. Revel in that. You don’t know, unfortunately, when another moment like that will come around.

In life, absolutely enjoy the moments. Be present. When you come across something amazing, pause, take it in, and revel in it. It can be something big, like an opportunity at work, or meeting a special person, or something small, like the smell of jasmine as you walk to your car. Take it in and let it fill you up.

I Investigate. The person with dementia may not be able to verbalize how they are feeling. You need to be a detective. Are they hungry, thirsty, tired, do they have to go to the bathroom? Check out the environment, is it too loud, are they uncomfortable where they are sitting? Sometimes, it’s up to you to figure out what’s wrong.
In life, do a little investigating of your own. Did your partner really mean what he or she just said? Or does it come from somewhere else? Did something bad happen at work? Do they not feel good? Everybody’s got something on their mind.

M Mistakes. You will make many as a caregiver. There is no such thing as a perfect caregiver. But you need to forgive yourself if you lose patience with your loved one, or moved too quickly to wash her and upset her. You are doing the best you can. Just keep giving love.
In life, you will make plenty of mistakes. Try not to regret them, try to learn from them. They are part of the fabric of your being.

E Every day is a new day. Just because you and your loved one with dementia had a bad yesterday, does not mean you will have a bad day today. Their brains wipe the slate clean. They may not remember the argument you had when you tried to get them to the doctor the day before, so you two can start fresh.
In life, today is a new day. Yesterday may have been incredibly taxing, but today, open your arms to new possibilities. You have another chance to make it great.

R Re-direct, don’t correct your person with dementia. Their reality is different from yours now. They can no longer be rational and come into your reality. So go into theirs. Validate them. “Yes, it is Tuesday (even if it’s Friday), but today we are going to do a Friday activity!” Believe me, it will make communicating so much easier.
In life, is your co-worker seeing red and yelling at you for no reason? Validate and re-direct. “I am sorry you feel that way/that happened/etc. Can you help me with this other thing?” Let them know their feelings are real and acknowledged, and then try to take them off topic.

S Sense of humor. You need one as your loved one is slowly taken away by a mind-robbing unfair disease. One day later in Mom’s journey, while visiting her at the nursing home, she was somewhere else. I didn’t get any eye contact, no hand raise, no response really, as I wheeled her around in her chair. At the end of the visit, the handsome male nurse walked in and approached her “Hi Linda!” He said with a smile. What do you think happened? Mom lit up like a Christmas tree. Big smile, “AH!” she said, and put her arm out. I just smiled and laughed. Nice one, Mom. I am my Mother’s daughter, I thought.
In life, you have to laugh sometimes. Life hits you hard, it can be frustrating, but look for something positive, and smile and laugh. It’s a necessary release.

I spelled Alzheimer’s here with the life lessons…A through S. I hope you never have to write it down, or say your loved one has it. But if you do, hang in there. Through this hardship, you will learn so much about yourself, and life.