People love drama. Not everyone, but some people really do. Just an observation I have made and one that is becoming a bigger one to Sister K and me recently. People complain of so much going on- X, Y and Z…and we just look at them. We empathize. We are sympathetic. We then share our own daily stresses…and we don’t get irritated in any way because the issues they describe are valid. Everyone has issues. It’s part of life.
But lately I am feeling a bit lost when I stop to think about how much is truly going on- I felt this way this past weekend while I was sitting at home at our kitchen table talking to Dad. He told me he just feels worn out. He has gotten help during the days for Mom but at night as soon as he gets home he said he literally has no time for himself. He goes all evening and all night long. He is a full-time caretaker. In some ways this would work if this was all he did but he also runs a major company during the day. He has the added stress of a full-time job on top of this. Then on top of that he is the head of our household. He is Dad- the one who is supposed to know everything and fix everything.
And now, in light of events from last week he now has the added weight of Papa’s hip replacement recovery. He is not responsible for the recovery and Papa really seems to be doing well- but Mom wants to get to the hospital to see Papa, therefore time now has to be allotted for that too. The process of getting Mom just out the door is a lengthy one, then getting her in/out of the car and back inside…it is not easy and it’s not quick. He told me that when he got the call in the middle of the night about Papa’s fall Mom was upset that he wasn’t more upset- and he said he just sat and stared thinking, how am I going to take on another thing right now?
He’s doing it though. Somehow he is doing it. But it worries me too. You can read between the lines and see why that would worry a daughter about her father. At the same time it frustrates me with Mom’s MS because quite honestly I don’t understand it. We have been told often by people the MS sort of ebbs and flows; you experience relapses; then recover; but Mom just seems to ebb. She doesn’t seem to go back to where she was before, she just gets worse– and I don’t understand why? Is that how this works? Is that how this is going to work for her? What is going on?
I have a lot of questions. Questions that are sitting right below the surface for me. Questions and concerns about all of this. I also feel helpless. I want to do more. I wish I could do more. I can listen but that’s all I feel like I can do- I can’t even think of advice to offer. Yesterday as I listened to Dad I just sat there with my head feeling blank…thinking how much more can you seriously take. I didn’t think this about myself- I thought this about Dad. And he doesn’t complain, he doesn’t get upset, he just takes it on- but I can see how it is wearing on him. I can see how he is tired. I can see how all of this is becoming too much…but then I am left with the question of how do you even fix that? How do you make it less? I don’t know how you do.
I feel like all I can do personally is not add to the stress. But beyond that I am at a loss. A head full of thoughts but no words and no way to fix anything.
Do you ever feel helpless that you can’t help a loved one more? How do you handle your MS with either yourself or as a caretaker? How do you stay positive and keep going? Does anyone even understand the path of MS?
MS recess 
There are several variants of MS. From a distance, it sounds like your mother has the primary progressive form, not the relapse-remitting type your sources described. If she does have PPMS, the outlook suggests that your father and family must soon face getting even more additional help to cope with daily life. Having been a 24/7 businesswoman in my preMS life, my feeling is that your father’s stress must be alleviated somehow. Otherwise, the stress of two, in effect, 24/7 jobs is going to do him great harm. I wish you the best.
What Judy said.
So sorry to hear about the additional stresses and the load that your dad is having to carry. It did strike me that he is lucky to have you (and other family members) that are aware of all that he is doing, and are concerned. It may not feel as if that is helping much, but just knowing that he has your support may help him in small ways. I am sure that for every question and concern you have, he has double, as it sounds as if he is there more often for all the day to day stuff that happens and comes up. My hope if that maybe your dad can talk with you mom and together they can create some sort of “plan of attack.” I do agree with the above commenter in that he does need to find some way to alleviate some of the stress. As a parent I know how horrible it feels to worry about your own child, but as a child I also know how hard it is to worry about our parents and watch them struggle with the crap life sometimes deals us.
Sorry to hear that you continue to struggle with all the unknowns that come hand and hand with MS.
Wish you the best!
Cheers,
Meg