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“I promise, you will never regret it.” My Grandmother used to always tell me. I believed her to a point, but I think I still had some doubts. I have since learned, that her promise was true. I do not, and never will, regret taking care of my mom.
“You have tested positive for Huntington’s Disease.” The scariest thing my mom probably would ever hear at the young age of 28. There was, and still is, no cure. Can you imagine the devastation she must have felt, knowing a disease would take over her? A disease that changes you in so many different ways? A disease that gives you a drunk-like movement, slurred speech, eating troubles, mood swings, and trouble at comprehension? On top of this, my mom already had four young children. I can’t even begin to imagine the feelings that she felt. To look in your children’s eyes and know that you, someday, will be ‘taken away from them’ and not be able to care for them.
“Ahhhh! Run!” We screamed as our mom would chase us around the coffee table in the living room, with the music blasted all the way up. I don’t remember much about my mom before she really started showing symptoms, but I do remember how much she really did love us. Every holiday she would spoil us with presents and LOTS of candy.(HD patients also develop an obsessive compulsive behavior.) We as kids loved it, but I think our dad got tired of spending the money. As we got older, our mom got worse. We got to the point where we wouldn’t tell her about Halloween, valentine’s day, or Easter because all she wanted to do was get candy, and when my mom got candy, she didn’t just get a little.
I grew up all my life with my mom being sick. Yeah, sure, she wasn’t completely sick, but she wasn’t there like a normal mom (and she couldn’t help it). I remember when she used to take us to school, come to our class parties, make cakes for everyone’s birthday, and make candy for almost every holiday. My mom was slowly being taken away from me. She could no longer take us to school and became too ill to come to our class parties.
When I was younger, I knew she was sick, but I didn’t understand completely. I thought it was just a disease that you could get over. I went through life, slowly beginning to understand the disease more. I always wondered why our family was affected by this, and no one else I knew understood.( Though, now I’m SO thankful for the things I have gone through because it’s really made me grow up.) I did a lot of the cleaning, and it was so irritating to clean up after her because she wanted to do things all by herself and making a huge mess.(For example, when she wanted juice she would get out all the mugs from the cupboard and spread them out on the counter and overfill them all and spill juice everywhere. The dishes and juice were A LOT to clean up.) No one I knew had to clean up after their own mom, especially at my age. I was so angry. I was angry my mom was sick. I was angry I couldn’t fix her. I was angry I didn’t completely understand it all.
Every time I would try to help my mom, it was a fight. She wanted to do things all by herself(and I guess that’s where I get that from.) I struggled with being embarrassed of going places with my mom because she looked drunk and we couldn’t control her. Everyone stared at her, and it made me so angry. I’m not sure whether they were glancing out of curiosity, sadness, compassion, or judgment, but I didn’t care because I didn’t want people staring at my mom. As time passed, she started to get worse. Her movements got to the point where she was falling constantly. Her talking got to the point where I was the only one who understood her because I was around her the most. We tried to avoid taking her to the stores because she would fill up carts with a whole bunch of junk, and we would have to put it all back and then she would go ballistic when she saw us doing it.
I knew my mom was getting worse when she was no longer smiling and giving me hugs. I didn’t know she would soon be leaving our life. We thought she still had a few years to live, but we were wrong. It was on a Saturday February 18, 2012 that I remember so clearly. She was taking a 5-day respite at the nursing home so I could have a break because she was hard to handle and on top of that, she was having some weird pains which made her impossible to handle. I walked in her room and saw her laying on her bed with purple and black swollen, shut, eyes from previous falls she never healed from. I couldn’t bare to look at her. She tried sitting up with her swollen shut eyes and moaned. I almost ran out crying. That night, I went home and had a meltdown. How could my mom just all of a sudden get so much worse? What happened to the few years we thought she had? I said I was ready for her to go home with Jesus and be sick no more, but after contemplating it in my mind, I didn’t know if I could take it. How would I adjust to not caring for my mom anymore? I couldn’t stop crying no matter how hard I tried. It was time for me to face the truth. My mom was actually dying, and I HAD to let her go.
Two days passed for me to get a hold of myself. I was at my friend Janelle’s house when my mom-mom called telling me my mom almost died from aspiration. We rushed to the nursing home and she was hooked up to the oxygen. At this point, she was unable to talk, clearly anyway. I had school the next day, so I went home. I woke up in the middle of the night to my dad saying he’s going to the nursing home because mom aspirated again. Yet again, we rushed to the nursing home, with our dog, cinnamon.(My mom loved her animals). So, I decided I my as well stay at the nursing home. She was thrashing all over the place so the nurses gave her morphine so she would be at peace. We all stayed at the nursing home around the clock. We wanted to be there when she passed.
At this point, her respite was supposed to be over, but the kind Mark Yoder, owner of the nursing home, knew her time was coming to an end so he let her stay as long as she needed. It came to Wednesday night, and our pastor came in and talked to our family. My dad wanted to say his goodbyes when my mom was semi-awake and not on morphine, but my mom-mom didn’t want to see her in agony. They agreed to disagree and mom-mom went home that night. As soon as mom woke up, we called dad to talk to her and immediately he called for morphine.(which is a miracle in itself because he was completely against morphine.)We all took our turns saying goodbye to mom, but our brother, jon was asleep and wouldn’t wake up.
The next day, I contacted family telling them that if they would like to see mom that they may want to come soon. Immediately, family came in and spent quite a bit of time with her. Thursday night came. Jon was awake to say his goodbyes. All of the immediate family was there: pop-pop, who came without any request ( he hates nursing homes.), Ricky, my brother, who, in previous days was leaving to go home and get ready for school the next day, mom-mom, who went home the previous night. My mom was sitting in her chair, sleeping. My mom-mom sat by her side holding her hand. Slowly, without any prompt, people one-by-one came and sat all around her in their own timing. We all sat in silence. Waiting. Watching. I held it in so long, and I felt the need to pray. I prayed God would take her peacefully, and bring our family comfort.
“Take melody and Destiny out” my mom-mom said to Tiffany. “No! I can’t leave her! I can’t!” I screamed. It was all happening so fast. “Was my mom dead?” “Why are they making me leave her?” those thoughts burned inside of me. We went to my mom-mom’s office and sat there, hypervenalating. In shock. It was 1 AM, on Thursday, February 23rd, 2012. My mom was gone. Our pastor, a close friend, and the owner of the nursing home all came in. They took turns expressing their condolences and love. We gathered in a circle, at one in the morning and talked about memories of our mom, and prayed.
If you pick the details apart, you can see how precisely planned by God it was. My mom was in the nursing home that first Monday she aspirated (past her respite date). If she was home with me, she would have died right on the spot because no help would of come soon enough. No one would have been able to say their goodbyes, and I would have to constantly deal with the guilt. My mom could have died on that one Wednesday when everyone but my brother said their goodbyes and when my mom-mom wasn’t there, but she didn’t. She died on Thursday after EVERYONE said their goodbyes and after EVERYONE was there to watch her go. Another detail I didn’t mention, was she got to go up to Ohio to visit her brother she hadn’t seen in a few years a month before she died. So many things worked out, and we were just so blessed with the overwhelming( in a good way) support. Our community helped us so much! People were constantly bringing in food, cards, or just visiting.
Our mom died 5 days before her birthday. We thought it would be a great idea to have her funeral on her birthday, and have cake and ice cream afterwards. Our mom loved music, so we made the funeral a celebration service with lots of singing, and our school choir helped sing and do a skit. It was honestly, the best funeral I have ever been too. It was SO beautiful, just like my mom.