Have you ever been in a position where you said to yourself ‘I don’t think I can handle any more of this’ and one of two things happen. You handle it and move on or you lose it. However, when you do, you pick up the pieces and ultimately, you move on. I am not just talking about what is going on with Phyllis and ALS. I am talking about anything in anyone’s lives right now. I have friends with all kinds of struggles but I feel that at one time or another we have all been in the position of losing it.
Losing my mind
This last week was my first week back after a month off work. I would like to say I had a fabulous vacation in somewhere warm with sand and a cold beverage, but that is far from what happened. It was also Hunters first week back to school and her cheer leading schedule is in full swing. It seemed that it wasn’t possible for things to get any more jam packed on the calendar. I had a full blown vacation hangover. I know we all have the moments where it seems like from the time you wake up to the time you fall back into bed that you feel like you just ran a marathon. I know I am doing the best I can do and I know many others are out there doing the best that you can do too. But you get up the next day and start all over. It is a fresh start and you move on. But then you have that curve ball. As I like to say, the random thing that blindsides you on any random day. It could be your car breaks down, or you get the flu, or your kids get sick. Whatever it is, it takes all your strength and control to not lose your mind. In my case, ALS is that curve ball. It raises its ugly head and decides to throw us one early Wednesday morning. Phyllis had started to have new symptoms. Apparently her disease took a break for a few weeks, but the changes came back in full swing. God forbid we have some time without changes. From Wednesday on, it was a long hard week for all of us and especially my dad. Being an hour away, it is making me lose my mind with worry and frustration cause there isn’t anything I can do but call doctors and complain to them. Their response is:
“There isn’t anything else we can do but make her comfortable.”
Losing my shit
I have a high tolerance for dealing with people in stressful situations. I like to think I keep cool when things go crazy. But when one has the everyday life challenges going on and then you get hit over and over and over again, after a while I think even a sane person would lose their mind in the aisle of Meijer shopping. I am standing there asking myself “Why am I tearing up in the vitamin aisle?” Because I can’t find Hunter’s vitamins she wants. Yup, I was starting to lose it over vitamins. My therapist that I had after my brother died called that ‘the pressure cooker syndrome’. I keep throwing things in the pot and the temperature keeps rising. Then if I don’t’ express myself or let off some ‘steam’ I will lose it over something dumb, like vitamins. Because we can only be strong for so long before we need to vent. I do get that chance to vent. My close friends and family, they have been awesome and supportive in my random ramblings and letting me rant against the disease that is being so unfair. I have learned a long time ago that I need to get it out, to release the vent. If I don’t, it has such a negative impact on my mental and physical health and I need to be there for Phyllis and my dad. Hearing the doctors tell us there isn’t anything else that can be done just makes me angry. It is a horrible disease and I have educated myself on it enough this past year that I know what is coming. I see it. It doesn’t mean I am prepared for it. I still have hope. Hope for one more day, week, month, or year.
Losing my friend
I went to the house on Friday to help my dad and Phyllis out. The strength that I see in her is amazing. She is one of the strongest people I know. Not just in a physical sense. She used to be one of those ladies that would be able to help you move furniture in your home or pick up a shovel to dig up a garden. But she is also strong in a mental sense. Most of the times that I see her or message her – whenever we ask “how are you doing today” I get the “thumbs up” with a smile. This week, was a tough one and she was pretty down on Friday. Watching her like this make me want to do anything I can to try to make her smile, or bring her spirits up. It also makes me want to do everything I can to not break down and ugly cry. I want to fix it. I want her to know that I see her struggling and that I am here, we all are. Watching her like this gives me clarity that whenever I feel like I am losing it that I am stronger than I know. If she can deal with losing everything and being trapped in her body that is giving up and still have the strength to give me a ‘thumbs up’ then I can handle the chaos of work, school and life’s curve balls.
Grandma Phyllis with her Grand-babies – Bree and Bailey
Update on Phyllis for January 16th
As I mentioned, we had some drastic changes this past week. Wednesday she started to have these ‘tremors’. From what the doctors told me, it is the disease just firing off all the nerves and losing control. For two days, there was little to no sleep for my dad or her, texts and calls from him in a panic, it was painful for her and trying to get the doctors and nurses to find something that can help took too long. She described it like when your hand or foot falls asleep and you have the pins and needles effect, except it was all over her body. She and dad had a rough Wednesday and Thursday trying to get the tremors under control. By the time I got there on Friday, she only had a few light episodes. But nothing as bad as it was. John Covel spent the night on Wednesday and Thursday but I am calling hospice today to try to get them 24 hour care. My dad is still giving me the ” I can handle it speech” and I am just telling him to deal with me working on getting him help. She has lost her ability to walk. She cannot use her left leg anymore to sustain weight or help her get up. I helped on Friday and stayed up with her till about 3 am. This is what 3 AM looks like. Tired, fighting sleep, no make up, but I am still smiling. Why? Cause Phyllis and my dad are getting a good night sleep. I can sleep any other day of the week but Friday I dealt with a little sleep deprivation to do what I can. Plus I got some work done :). The doctors have told us to take her off the rilutek since it has ‘run its course’ and it isn’t doing anything for her. That is the medication all ALS patients get to try to slow down the progression of the disease. While this is not what we wanted to hear, the stupid twist to it is that we can now get Hospice. You cannot get hospice for a person if they are doing anything or taking anything to prolong life. So with her getting off that medication, Hospice will hopefully give us the help we need.
I see all kinds of posts from friends about their struggles. I know that saying ‘I will pray for you’ may not always help, but I do. If anything, I feel it’s a little positive energy sent their way. I am hoping that they feel the support somehow. I know that everyone is dealing with their own personal struggles and I know I am airing mine in the blog. I do try to keep it bright and funny but this week just wasn’t either. I heard a friend this week tell me that “she was a horrible mom” because she feels like she isn’t doing all she can for her kids. She has her own struggles and with the help of friends and family she is handling it. I told her, and I am trying to do this myself. “Stop thinking about what you are doing wrong and focus on what you are doing right. Focus on the positive. Sometimes we don’t see how the people we love in our lives are thriving because we are doing the best we can to help them and support them. Even though we may feel like we are failing.” I took a moment this week to thank my John for being there for me. Because I was looking at the negative about living so far away and that it kills me. He just told me to ‘do whatever I need to and don’t worry what others are saying. You HAVE to take care of your dad and Phyllis.”
We are stronger than we think we are. We just don’t realize it till we are forced to be strong because it’s the only choice we have.