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
41 Comments
Leave a commentMakes me so sad and at a loss for words.
Thanks for your words, Carl. There is an answer–we just haven’t found it yet.
I feel for you, Beth Ann. I struggled with what I felt was a confused, lack of services, as we worked through Dad’s journey with Alzheimer’s, and his situation wasn’t nearly as complicated. I encourage you in your fight. I suspect you are already doing this, but look for solutions within both the Alzheimer’s and the Down Syndrome communities. It’s interesting, I recently decided to volunteer at tha Alz Assoc and visited their office here in Cincinnati. I was surprised to note that the Down Syndrom offices were located in the same building. I didn’t know about the connection until reading your post. I will have to find out if they collaborate or if that is just a coincidence. You are a writer. If you can’t find a solution on your own, make a lot of noise. Contact the press, government officials, social services, senior services, anyone you can think of. With Dad, I found out that answers were out there, just maybe not ideal solutions, and I got bumped around a bit in finding them. Thinking of you.
Thanks so much for your insight, Christine. I know you get it. I am not the primary caregiver at this point so a lot of the work falls on my sister in law to navigate the system . She has done a great job of sticking with it and working hard to find the one person who can give her the best advice and answers . She has recently connected with the state ombudsman so hopefully that will help in her search and mission. It definitely has made us all aware of the fact that there is a gap. Certainly we are not the only ones in this situation. I do suspect that there are more services in the larger areas but I could be wrong about that as well. As for finding local chapters for support those are even elusive at this point for some reason. Thank you for your kind words and your support.
Beth Ann, I wonder if you or your sister-in-law would want to talk to the woman that runs Georgia Options? Perhaps she is connected and would be able to recommend a place, or a person that is closer to Carlton or help in some other way. I can get you that contact information if you want. I feel for you all…..
You are so sweet–after reading a bit about Georgia Options what they do is amazing and so beneficial to families and clients. I will definitely pass the info along to Colleen . She has made a few more connections the past couple of days that hopefully will give her more support and resources including the state ombudsman . I think it is one of those things that you just have to realize it is going to take time to navigate and it is not something that can happen overnight. It definitely makes me know that there is much work to be done in this area.
I’m sorry that you’re all going through this. Alzheimer’s is such a horrible disease. Add in this situation and you must all be heartbroken. I’m sorry I can’t be of more help here in Canada but I just wondered if in the short term while they look for a place for Carlton, is there day programs he can go to? Do they have home care coming in for help and respite?
I used to be a Care Aid and I cared for a lot of people with Alzheimer’s. Just a thought.
*A little side note I learned when doing this job, people with Alzheimer’s as they progress will usually only be interested in eating sweets.
They do have home care coming in while they are at work or at other events. He does still go to work one or two days a week at the “sheltered workshop” so that is good. He has had a pretty good week this week so some of the stress has been a bit better this week but like with anything it is a process and you have to wade through all the red tape and find that one person or persons who can actually help out. So we are still very hopeful and know that we just have not found that yet. Thanks so much for your encouraging words and suggestions. Definitely checking out all options. And how about that only wanting sweets! Interesting. He does love his cookies. 🙂
I wish you guys all the best. Here’s praying a place will be found where he feels as safe and at home as possible and you’re all at peace with.
Yes wanting only sweets is very much a part of Alz.
I didn’t know there was a connection. Now I wonder about my neighbor across the street who is caring for her aging sister who has Downs. She has become noisy and uncooperative and many other things that are on this list I wonder. I will talk to Rose about this, make sure she has her sister checked out. Thank you for sharing.
It is very possible that that is what is going on. Carlton was diagnosed awhile ago and while they are treating him with medications there are some things that you can’t really do much about. Alzheimer’s is a horrible disease. I hope this post was helpful and I hope that your friend feels like she has a support system because it is a tough thing. Please feel free to connect her with me if you think it would help.
This is a difficult situation and I applaud you and your sister in law for all that you do for Carlton. He is so lucky to have family to support him. So many don´t which makes matters worse. I know in my heart that you will find a suitable solution.
Thanks, Darlene. My sister in law is the absolute best and her husband and daughter have also really been beyond wonderful in their love and care of Carlton. I feel that there is an answer that will be a good one for him but we just have to find it. A lot of patience and a lot of phone calls on my sister in law’s part will hopefully get the positive results. Thanks again!
Just when you think you’ve got something worked out, life throws a curve ball. I just lost my dad to Alzheimer’s. He lived at home until the last few months. My stepmother was so very lucky to find a Bridges facility on Cape Cod. She was there daily, as much as she wanted and they took great care of him. There are answers out there, they’re often difficult to find but when you love someone you keep looking. I wish you all luck.
I am so happy that you stopped by and shared your story. I know that we are not alone but sometimes it feels like it, you know? Sounds as if your dad had some really great care and a good place to transition to. I am very sorry for your loss. It is not an easy disease to watch a loved one have to have. Thanks again for taking the time to stop by and comment.
My heart breaks for you all! I pray for guidance, peace, and strength for all of you!! HUGS!
Are there any quality facilities outside of the county that would be available and of course suitable, at least in the short-term, (until there is one that has an opening in county) for Carlton? I know that would add an increased burden on the family and Carlton due to travel and the diminished comforts of family surroundings, but the burden of not having proper care for him could be much detrimental. Best wishes and prayers for a successful solution to the problem Beth Ann.
They have been checking surrounding counties and getting the same responses. In the past day she has gotten in touch with the state ombudsman so hopefully that is a move in the right direction. Thanks for your kind words and prayers!
What a difficult situation. It can be so difficult navigating “the system.” And often “they system” lets you down. I understand. Totally.
When you love someone like you do Carlton, you choose to fight. I choose to fight, too. Never ever give up. That’s my mantra. Most days.
Thanks for your support and continued prayers. We will get there—it is just a process that has to be worked through slowly.
Sending up prayers that the right solution will be found soon. It has to be so difficult for the family….
Thanks from the bottom of my heart. I really appreciate all the support you guys are showing. I know there is an answer –just taking awhile to find it.
I’m so sorry to hear this. We are actually considering having my step dad examined for it too. He hits almost all of the points on that list – and most noticeable his memory is clearly not what it was even a year ago. He forgets conversations that happened 5 minutes prior. It’s hard to watch that happen to someone who was once so interested in lively conversations. Now it’s just misunderstandings and frustration most of the time. I hope we both get some good info on how to proceed, because our loved ones certainly deserve it!
Oh I am so sorry to hear that your step dad is having some issues. It stinks. It really does. Memory things are so doggone frustrating and with Carlton his normal social butterfly self is completely the opposite which is really difficult to understand and watch. Good luck with your search for info and help with your step dad.
I’m so sorry that you all have to go through this. I know he’s so important to you. Love you!
Thanks so much, Donna. I appreciate it a lot.
Thanks for sharing Beth Ann I have a dear friend slipping I up dementia. It’s worrying for us to watch and so scary for her.
I do hope you are successful in your hunt for the right place for Carlton. Hugs from this side of our wonderful world
Thanks so much, Judith. It is a sad thing to watch someone slip away and dementia is so sad at times. There are moments of clarity and I guess you just have to hang on to those moments. Thanks for stopping by and your sweet comment. Made my day.
Predictive text on my iPad. My friend is slipping into dementia.
Beth Ann, so sorry you all are having to navigate these waters and go through this. I will definitely share your information with my co-workers as it may give us some helpful information in working with some of our clients. My best to you and your family.
Jenny
Thanks, Jenny. It is really a frustrating process at times because it just seems like we are in it all alone –that no one else has ever had this happen before and I just can’t believe that at all. Thanks for the support. 🙂
So sorry to hear about this. Used to witness people with dementia & Alzheimer’s often when I worked near the Mayo Clinic… It’s refreshing when those rare moments of lucidity happen, and so apparent in the smiles of the families. Wishing you and yours the best of luck!
Thanks so much. It is just a difficult thing to navigate and when it should be a fairly simple thing to connect with the right person or place it just isn’t. We will get there and yes—we totally love it when Carlton is the old Carlton.
I’m saddened to hear this about Carlton. We’ve come to know and love him through your blog. Praying you find answers.
Thanks so much! WE are anticipating moving him into an assisted living place on Monday. Prayers definitely appreciated.
I’m glad you found a solution.
Thanks, Cristine. Now we have to just pray he goes with a happy heart. 🙂
[…] you know that we have had some big decisions to make concerning Carlton’s care. We came to a crossroads of sorts and I am happy to report that during the past week Carlton has been successfully moved to a lovely […]
[…] in a lovely facility with a private room. It was a difficult time leading up to finding a place and I wrote about it here..We visited him for the first time there earlier in June and while it was difficult to see him in a […]
I just had a chance this morning to go back and read this as I was getting Carlton’s card ready to mail. Prior to that the part about Alzheimers had slipped by me. My heart sort of dropped when I read this as my Father had early onset Alzheimers also. I know first hand how devastating this is. You might want to read “Watching Dad Leave” on “poetry and then some” as you would have a perfect understanding of it. My heart goes out to you and your family.
DiAnne
Thank you so much, DiAnne. I really appreciate it and I know that there are a lot of people who have experienced similar things and it is heart wrenching. Thanks for referencing your post—will go check it out and I think I have you finally added to my Blogloving feed so I won’t miss your posts. 🙂 Thanks again so very much.