my moms journey is my journey

There are moments in life when you feel like you are on a roller coaster, a broken roller coaster at that. You are going through life and suddenly you literally feel like you are spinning out of control. It is in these real moments of life that you are humbled, and you are reminded that there is only ONE who can help you. So, you cry for mercy, peace and help, and then you wait. Sometimes that wait seems like FOREVER, so you have to trust. You trust that God will provide you with exactly what you need. This is where I am in life. My life recently felt like it spun completely out of control. I have cried out to God for mercy, peace and help, and now I am having to trust and wait. Let me tell...this is not easy for me. I like everything lined out and in order, and I always like to have a plan. If I want something done, I usually wanted it done yesterday. You know the feeling!?!?

My life and my families life felt like it spun out of control right in the middle of the 2018 holidays. I realize it is months later now, but I still want to tell you about it.

My mom has had different health problems over the years, but one specific one in particular started about 3-4 years ago. She started falling. Just randomly. There was no rhyme or reason. There were some other things going on, but the main complaint she had was the stumbling. She would be walking and out of nowhere her foot would not move or would drag. She had been to the doctor and I had taken her to the doctor, but no diagnosis was made. There have been guesses of Parkinsons, but the neurologist said it was parkinsonisms caused by medications. The problem only worsened. I knew about some of the problems she was having, but she was also very good at hiding a lot and the extent of it.

This past year the falling became more regular, so I started trying to help her get answers. She was getting worse and I needed help!! Let me tell you....it is not easy to get an appt with a nuerologist!!!!! I will spare you all the details of that process and skip on to December 20, 2018. We were fortunate enough to be squeezed in with the neurologist at the UAMS longevity clinic. He spent about 2 hours with her that day asking questions and watching her walk and move. He told us he believed she was in the beginning stages of Progressive Supranuclear Palsy (PSP). He also told us he was moving to North Carolina in 2 weeks. That is NOT what you want to hear from your neurologist EVER!!! So, we start the wait over to get into a new doctor.

Meanwhile, my mom is declining quicker than I can keep up. The falls were happening over and over and over. Her body was getting weaker and weaker, and I started seeing more and more problems that she has hidden so well from me. She is a smart woman. Smart enough to cover up what was going on; OR, maybe I am just not so smart. Either way, I was realizing this problem is WAY WORSE than any of us realized. "Us" meaning my family. So, at this point I basically step in, still trying to stay on the line between letting her be independent and full on taking over. I am not even kidding though when I tell you I couldn't keep up with the decline. I was going to her house A LOT bringing and fixing food, doing laundry, cleaning her kitchen, helping her with what she needed. Then, one day I came in and she told me she had fallen during the night and didnt call me. She layed there until she crawled to the end of the bed and used the hope chest to get herself up. I might not ever forget that day. That was the week we started staying every night and quickly that has turned into having someone here with her almost 24 hours a day. I am only able to leave her for very short times. We have become caregivers almost over night it seems, and the crazy thing is WE DON'T EVEN HAVE A DEFINITE DIAGNOSIS!!! Regardless of that though we see the decline and it is happening so very fast!!! As my brother said, who cares what you call it?

That is so true. We are waiting for a diagnosis and in the meantime she is getting worse right before my eyes!!

She is a determined woman!!! She will not give up walking which is fine with me. We do have a wheelchair ready thanks to great friends and will probably be using it more and more very soon. Her body is giving out on her. She is extremely exhausted and sleeps a lot without the help of any sleep medication. At times she cannot move her legs at all. When she is really tired she has a hard time holding her upper body upright or raising back up if she leans over. Toby and I have had to physically move her body because she can't. Her short term memory is quickly failing her. This could almost be a blessing because she doesn't recall her most recent fall, but it is very hard to see. Well, it is just heart breaking.

Again, I will spare the details of getting into a new neurologist. We were pleased to finally get an appt the end of this month. That was scheduled about 2 weeks ago, so the wait has seemed so long. If we get a completely different diagnosis in 2 weeks and there is treatment to make this better, that will be great. However, if the last neurologist is correct and it is PSP then she will only continue to decline. I have read A LOT about PSP, and I have known one person who had it. Honestly, it is spot on with what we are dealing with, and I am afraid she is pretty advanced already. She is fully aware of what lies ahead for her if this is the diagnosis, but that hasn't dampened her spirits. I am very encouraged by her attitude and

perspective.

I titled this post "my moms journey is my journey" for obvious reasons. People have shown concern for me and how it will affect my health by moving in with her and taking care of her. My reply.... "who would take better care of my mom than me?" I will not lie. It has been very stressful!!! It is taking a toll on my health, but I can rest in knowing I am doing everything I can and she is being taken care of. I intentionally take care of myself. I promise!! Some days are better than others, but I am trying my best to be very intentional. I know that is a HUGE concern for a lot of people. It is for me as well. Let me tell you this......The plane has crashed and I have put my oxygen mask on FIRST!!! My goal it to get through this trial without any flares!!! I will be eating Sunrider like my life depends on it, because my life really does depend on it right now. I am also finding times to rest. I know I have to rest and recharge. I am letting others help when possible. Trust me when I say I will fight for my own health. I have Toby and I have 3 girls watching and still needing me!! I will fight hard, and while I fight to stay healthy and keep my family healthy I will walk my moms journey with her every step of the way!!! God has given me this opportunity to be a servant and do His work and an opportunity to teach my girls how to take care of me one day. With His help I can do this and I pray He will be glorified throughout the journey!!