Left Unshared

Some days are pleasant but most days seem longer than usual and every day is a new battle. There’s always something to do, somewhere to go or someone to visit.

Life with the Bearded J’s became more hectic when we assumed full responsibility of my aunt Lisa, who’s 49 years old and was born with Down Syndrome.

She was my childhood buddy, I remember spending summers at my Grandma’s house, with her. Lisa and I would color, play games or cards, sing karaoke and dance our hearts out. We would swim on sunny days or play Super Mario Bro’s on rainy days.

When Lisa came to live with us, I expected it to be like the summer’s we spent together, decades ago. Although those moments still happen, they are far and few; that’s not at all what normal life is like. I had no idea the amount of care and attention she would need and desire.

I don’t know if Lisa can still do all those things we used to do for so many summers because she won’t even try. She’s changed so much and it’s heartbreaking because her regression is highly noticeable.

Some days I think Lisa’s developing Dementia, which is common in adults with Down Syndrome. Other days I think she’s still confused about everything that happened with my Grandparents and the events leading up to her arrival at our home. But every day I know I’m going to have to reteach her something that she once knew how to do. And every day, Lisa wants to argue with everyone about anything.

Lisa loves to fight. Everyone needs a good argument every once in awhile but she needs it every day. They aren’t normal tiffs or sassiness that kid’s dish out- I would prefer those kind. These are full blown yelling and screaming at each other arguments, over nonsense. Half the time I’m not even sure what starts it and each time I don’t know how to end it. I say stop, I try to ignore her and I walk away, but she keeps going. There are times when I have to take the kids up stairs and turn music on because her screaming has made Jace cry and terrifies Jenna.

There have been times when Brandon has to step in and say “enough is enough,” and allows me to take a time out. Then there’s times when Brandon isn’t here and I can’t walk away from the problem. Those are the moments that scare me. Yes, I’m scared. Not of one person or one thing but of the whole scenario. I know it’s not normal. This isn’t how people live, this isn’t how my family lives but this is what our life has come to.

I’m scared because I don’t know what to do and I don’t know if all this will leave my kids emotionally scarred. Will they be better because of their time spent with Lisa or will she leave a negative impact on them? I’m scared because I don’t know the end game.

Do I wipe my hands clean of the situation? I can’t, Lisa doesn’t have anywhere else to go. Do I spend the rest of time living in fear of the repercussions from the decisions we made? I have to. I can’t turn my back on family, especially not Lisa.

I’ve read every article I can get my hands on, I’ve reached out to my Grandparents and other family members on how to cope with her but nothing has helped. This isn’t like raising a child where you can mold their behavior through therapy. Lisa is set in her ways and she won’t change a thing for anyone, there are no tricks that help. No matter how many times you say something, she’s going to do what she wants because that’s how her life has always been. Even in incidents that are life threatening, she does what she wants with no regards.

Lisa has taught me a lot about life. As a child she taught me empathy. As a teen she taught me sympathy. Now as an adult, she’s putting those two traits to the test.

My life hasn’t been funny lately, it’s been exhausting, hectic and HARD. Caring for Lisa has been the hardest thing I have ever had to do, and because most of Lisa’s shenanigans are not something I want to share -they don’t embrace her positive side- I have no place to vent.

I started writing as a form of therapy. When I needed someone other than Brandon to talk to, I have turned to you and it’s always worked. But I can’t completely open up about Lisa and what hurts worse, I can’t find any humor in what I’m going through with her.

In the beginning- I could laugh it all off. Her escapades seemed silly and still had shock value. I made excuses for her behavior, tried to cover it up and not let anyone see how badly she had regressed.

Six months later- I feel emotionally broken. Nothing shocks me now, I expect the worse going into everything with no hope of a better outcome; I know how she is.

At times I’m desensitized from it all. Then there’s moments of overwhelming emotions. It’s hard to explain but I do know that none of it brings forth humor.

Some things are better left unshared. I have always kept the best and worst Bearded J moments to myself, Lisa moments are no different.

I want to vent to you but I can’t. I just can’t.

I already feel like I’ve said too much.

 

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11 thoughts on “Left Unshared

  1. It hurts and I’m sorry. The loneliness is something so complete, sometimes the only thing you feel you can do is hide it away. You don’t see the light at the end of the tunnel and your silver lining is tarnished. But Love, because of Love; you carry on. One foot, two foot, frontwards, backwards, running sideways and falling on your face more times than you can count. Exhausted and heartbroken, you carry on. To give up isn’t possible or even questionable. You erase it before it can be a thought. Take the time for yourself and decompress. But when someone offers you a hug, don’t say no.

    *hug*

    • Thank you.

      I waited till today to read all the comments because I was entirely too emotional yesterday. And its happening again. Everyones kind words, encouragment and advice is exactly what I needed. I needed a stronger, vast support system. People that have been there, know the outlets and understand the pain. Thank you Barb. ❤

  2. I am so heartbroken for you, and for what you are going through, isolated. I get it. My uncle is a paranoid schizophrenic with extreme OCD and his is a challenge. My mom cares for him now, but eventually their care will fall to me. I worry daily how that will impact my son. That being said, you are a giving, loving soul. The easy way would have been to put her somewhere. You chose the hard path. And it’s obvious that you love her. Still. Even with the fear and the stress and the overwhelming task of her care. You are stronger than most, and more compassionate than many. I hope you find some answers, and some peace. Big hugs and good vibes to you. ❤

  3. Maybe you could find a caregivers support group in your community or on Facebook where you could meet others in your position who have more knowledge and experience that you could tap and give you a place to vent with others who really understand.

  4. Is there a local adult day center? I’m sure you’ve already done the research, but it never hurts to mention possibilities. I’m in awe of your open heart and willingness to take on a truly difficult circumstance. I wish I had an answer, but I only have prayers and a shoulder. Maybe an ear, if you ever need it💗

    • Thank you. I have applied for something similar through the state. I can’t afford the type of respite/adult daycare that she needs, on my own. So hopefully that goes through soon, some type of relief.

  5. My eldest cousin / step-sister (yes I know that sounds strange) is the same. She is now nearly 70. When my parents passed she went to live with one of my sisters, her behavior though was similar to what you are experiencing and it was difficult for all, including ultimately Candy. The disruptions in everyone lives were untenable. Ultimately, Candy was diagnosed with depression and early onset dementia, two problems that were causing some of the behaviors though not all. The depression was due to the loss of familiar surroundings and people (both my parents passed within 10 months of each other), the dementia as noted is not uncommon with Downs Syndrome.

    We medicated, it helped. We used adult day care for a while, it helped. Ultimately though we placed Candy in a facility equipped to help her and handle her issues. She is nearby, she has round the clock care, she has therapy both occupational and physical. While it may seem on the surface we abandoned her, we did what was best for everyone including her.

    You have to consider all the members of your family and the impact of caring for Lisa in your home may be having. I wish you the very best.

    • It’s hard. It’s so hard. There are times when she says how much she loves it here, she loves the kids, she loves me. Then there’s times when she calls me my sisters name or calls me “that lady” and I wonder if she even knows who I am. I have so many memories of her and I together and she has none. I can tell what kind of day it will be by if she can remember who I am when she wakes up. It’s sad.

      She feels like she’s lost so much already, O don’t want her to feel like she’s losing even more.

      • I do understand, truly. Candy was one of my best memories when I was very young and having a very hard time. She was so empathetic and loving. I wanted her to always be like that, always remember.

        I wish I could give you something to hang on to, hell I wish I could give you a hug and tell you it will be better.

  6. I wish I could give you some advice or make it better. Seems as though you’ve already got some and you are considering your alternatives. Big hugs. And we’re all here to listen whenever you want.

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