First published on It’s Just Life on February 26, 2016 entitled “Crossroads”
We are at a crossroads of sorts. Developmental Disabilities. Down Syndrome. Alzheimer’s Disease. All three of these things describe my brother in law, Carlton, whom I have written about before here on It’s Just Life. I have only written about him here because I love him and because he has been such a bright spot in my life over the years. I have always been careful to not share anything about him that is not positive because that is not why I write my blog.
We have come to a bit of a crossroads with Carlton. For the past 4 years he has successfully lived with Chris’s sister and her family. They have provided a wonderful home for him and he has been happy and done well working a few days a week and enjoying life. But a diagnosis of early onset Alzheimer’s has changed his life and theirs and things are not the same anymore.
People with Down Syndrome have an increased risk of Alzheimer’s and a good portion of this population will have early onset Alzheimer’s simply because their predicted life span is less than the average adult. The risk is greater and in Carlton’s case the risk became a reality. Studies suggest that more than 75 percent of those with Down syndrome aged 65 and older have Alzheimer’s disease, nearly 6 times the percentage of people in this age group who do not have Down Syndrome.
I have been reading a lot about the subject on the website of National Down Syndrome Society and they have some really helpful information. I found this list to be exactly what we are seeing with Carlton:
Early symptoms may include:
Reduced interest in being sociable, conversing or expressing thoughts
Decreased enthusiasm for usual activities
Decline in ability to pay attention
Sadness, fearfulness or anxiety
Irritability, uncooperativeness or aggression
Restlessness or sleep disturbances
Seizures that begin in adulthood
Changes in coordination and walking
Increased noisiness or excitability
So what happens to an adult with a developmental disability like Carlton when living at home is no longer a safe and reasonable option? This is where the problems arise as my sister in law has found. Navigating the waters of the system is very difficult and not for the faint of heart. Place after place have given her hope only to later say that a placement in their facility is not appropriate because of either his young age (46) or because of his developmental disability.
Certainly this is not the first time that someone has had this experience. Certainly there is a place for Carlton where he can enjoy a safe place to live while still being able to maintain a bit of his own independence. I suspect a large part of the problem is because he lives in a fairly small county with limited resources when it comes to facilities that might be able to be a good fit but it does not make it any easier for anyone in this situation.
It is frustrating to not be able to “fix” this situation and Chris and I are trying to maintain a positive attitude, support them in every way that we can, and continue to search for answers. Do we feel like the system has failed? In some ways that answer would be yes. Have all avenues been searched for possible solutions and help? No. Does it make me want to become an advocate for others in this situation? Absolutely.
When faced with a roadblock in life we are given a choice on how we respond. We can either give up and accept that there is no solution or work around or we can choose to fight. When someone like Carlton is involved I choose to go the extra mile to make sure that a good solution can be found. I choose to fight.
I have to be honest that I struggled when writing this post because it is such a personal thing. In the perfect world Carlton would have a place to live where he is cared for, loved and protected from anything that can hurt him and where he can continue to live his life in a nice environment. Everyone should have this and I am confident that there is still hope here. We just haven’t found the right solution.
How do you face challenges? Head on or do you skirt around them and hope that the problem will just disappear along the way somehow? Don’t forget to comment for Comments for a Cause.
Colleen, Carlton, Beth Ann
October 2015
8 Comments
Leave a commentI hadn’t remembered it was 3 years ago when all this happened. It seems more recent. I wish there were better solutions available.
In retrospect we see where things could have been done to help him out more but you do what you think is the right thing at the time, you know? His parents always wanted to keep him safe and at home but I think a safe group home setting would have been wonderful for him years ago and allowed him a bit more autonomy and socialization when he needed it. But you do what is right at the time and make the most of it. Services are there but they are not always easy to access and that is the difficult part of it all.
Wow, I also didn’t remember that Carlton’s diagnosis was three years ago.
I know. A lot happened in 3 years time. But now we rejoice that he is no longer trapped in a failing body. Glory to God.
We definitely need more awareness on this very important subject so we can make sure everyone is helped were needed. Thank you, Beth Ann for sharing the story of this wonderful young man.
It is really tough to navigate the system at times and my sister in law did it with a lot of tenacity and grace. I credit her for all that Carlton was able to achieve during the last few years.
This is heartbreaking but it sounds like you found a place for him eventually.
We did. It was not easy and he ended up in various places over the past two years but each step was part of the journey. I am just grateful that he had so many people that cared for him and loved him well over the years.