Connect with the Best Senior Care Homes Near You!

Friday, December 11, 2015

How We Lived, Laughed and Loved Through Macular Degeneration

While I was reading  on a caregiver forum a few days ago, I can across a question posed by another forum member about Macular Degeneration. They wanted to know if anyone else had cared for a loved one with the eye disease.  That got me thinking, it may be helpful if I shared our family's story of dealing with the very common yet seldom talked about eye disease.

When you think about all the press and medical science that is aimed at things like dementia, heart disease, Parkinson's and so on you may come to realize that Macular Degeneration gets little attention in comparison, even though it is the # 1 cause of blindness in people over 65. My mother is one of those people and here in part is her story.

When mom was just a few years older than I am now, I remember sitting in a car with her one day while we waited for my dad to get done in the store. It was then for the first time she mentioned to me that she was having trouble seeing. She said " I can see but I can't see". What do you mean mom I asked her. She had trouble explaining to me what she meant but she knew something was wrong. At first we thought maybe  cataracts, so we made an appointment with the eye doctor. 

At that visit the doctor explained that mom had Macular Degeneration ( the wet form ) which causes blood vessels to become weak and bleed behind the eye causing partial vision loss. There was no Internet at the time and even if there were, we would have found little information about what was happening to her. Up until that time even though thousands of people where losing their sight to the disease very little research was being done on it because it was an "old people's " disease. Thankfully that has changed to some degree.

The treatment at the time for wet MD was to use a laser to burn the blood vessels and stop the bleeding. Treatments have changed since then, but this was the only option mom was given so she had it done. The bleeding did stop but the laser caused scar tissue to build up and so the treatment was not a big success. Mom lost her central vision as see in this example.
Normal Vision - Vision with MD

Mom was sent home with what is called a Amsler Grid. You can print one at this link:
The Amsler grid tool 

When you print it off it will have instructions on how and when to use it and what changes to look for. The grid will look like the one below.


With this simple piece of paper everyone can check their own eye sight to see if they are developing any problems. 

Over time mom's vision became progressively worse. Soon she had to give up driving which was one of the hardest things for her to do. Thankfully my mom is a person of reason and did not fight losing her keys as she knew she could hurt or kill herself or someone else should she keep driving.  That was a big step for her as she loved to go shopping and well, like all many men dad did not, and at the time she gave up driving mom was still in her sixties. To help her cope with the lose of her independence, dad would drop her off at the mall and pick her up at a prearranged time, this kept them both happy, mom got to go shopping but dad didn't have to tag along as that would have made him crazy, you know what I mean ;  )

Some time passed and more changes began to occur, she could no longer read without the help of a magnifier, and watching TV became more difficult so we arranged the furniture so she could sit closer to the T.V. We use to tease her about that because like all good mom's from the 60's she said over and over as we were growing up "don't sit to close to the TV you will ruin your eyes". More adjustments had to be made in order to help mom keep as much independence as possible. A low vision specialist visited the home and gave us tips to help out. 

Tips like:
Using Velcro ( yes Velcro ) on things like the knobs on the stove and washing machine and dryer so she could feel where to set the dials. They also gave her a bright marker ( florescent orange )  that we used to mark things making them easier to see. Mom also wore a pin that said " I have low vision". This pin helped out a lot when we were out, people seeing it became more patient as she struggled to make change, read price tags or just walk slower so she wouldn't fall.  The more we let her do for herself the better as this helped with the depression that people often feel when they are dealing with low vision. 

My mom is a remarkable woman who used every trick she could to stay active and independent. For her money she always had the bills facing the same way and sorted them before going out, smallest to largest. For change she learned the difference between a quarter and a nickle was the ridges. Even though they are different sizes that didn't help so the ridges did the trick.  Many funny things can happen when you do not see well, like the time we were at McDonald's and mom needed to use the bathroom. She always went alone because it was not far from where I was sitting, so no problem right? Well this time we were at a different McDonald's and the bathrooms were switched so mom walked into the men's room. She said she thought how nice they have low sinks for the kids, (this didn't tip her off) until she came out of the stall and a man walked in. Then she knew the mistake she had made, but mom being mom she just said it's all clean you can come in now and walked out, oops!

Mom also shared with me that she saw things that were not there. Apparently this is very common among people with low vision and particularity with those with MD. I asked her what did she see. She would see faces, some of people she knew like her sister or my dad and some she did not know. The faces were very large and right in front of her face. She also saw houses with long steps leading to the front door. These images would sometimes come at the most inopportune time like when we were sitting at a religious service. I would hear her giggle and she would say there they are again, I got to know what she meant. A few months ago I asked her if she still saw things that were not there and she told me no that had stopped several years ago. I also asked her how she felt about having MD. She told me she was very grateful that she still had her peripheral vision and would never be totally blind. Mom is like that, the glass always half full never half empty.  She learned to identify people by their shape, cologne, voice and even by their clothes as she could see bits and pieces. People were always amazed that she knew who they were and one of her best friends even said " I think you are faking it, your not blind"! 

As I get older I worry about the chance that I may get MD since it is hereditary and both my mom and her sister had itBut as my husband always tells me, worry get you nowhere and if it happens we will deal with it then.

As a caregiver I have come in contact with many people who suffer with MD. I tell them from my mom's own experience to stay positive and learn to use what you have.  There are things you may no longer be able to do but that does not mean you should give up. New treatments are coming along everyday and new devices to help people see with the vision they have are being invented as we speak. Technology has made so many huge advances since my mom was first diagnosed over 20 years ago. 

If you are caring for a loved one or a client and they tell you things, like they are seeing things or act paranoid or you notice they are moving their eye around when they talk to you, get them to an eye doctor. Time is of the essence with MD as it needs to be treated before the vision is compromised. Once the vision is gone there is no way ( at least right now ) to get it back.  And remember to print out the grid above and use it often both for yourself and those you care for. It may help you catch changes quickly.

And always remember the woman's room isn't always on the right!  Love You Mom!

Until Next Time 
Take Care
Ruth Anne 

No comments:

Post a Comment

Please leave your comment, and Thank You.. Ruth Anne.