I Suck

Wednesday was Jamie and TT’s two-year wedding anniversary. Thursday was my parents’ 26 year anniversary and I have done nothing for them. Saturday is my mom’s 1-year stroke anniversary and she is still status quo.

My mom got her driver’s license renewed back in February but does not feel comfortable/confident enough for Tom to take her out to an empty parking lot so she can re-learn how to drive. Part of it is because she is worried about her right weak hand – about being able to grip the wheel, turn, etc. Well I understand that but she should at least try. It might be too much; too many things to focus on, remember, at once, but you’ll never know if you don’t try, right? Also I ask her if she’s doing her hand exercises every day and she claims yes but how are we to really know? We (me and Tom) are both at work. And when Connie (my aunt) comes over, they do fun things like go shopping and out to lunch; Connie is not there to quiz her/make her do her exercises.

I have some speech therapists to call and so does Tom but neither of us has done so. We each have the same poor excuse: work is CRAZY. Likely the result will be the same as when I first researched this last fall when my mom’s therapy was about to end: you have to pay out of pocket, and you have to get her to the site. Both are hardships. If only I could be rich and pay for a private speech therapist. I’m getting $1600 back on my taxes and I was planning on ripping out my three remaining carpeted rooms and putting in pergo flooring to match the rest of the house, but now I think…I wonder how much speech therapy $1600 would get me.

My Grandpa, my Mom’s dad, is dying. We recently found out that he has liver cancer and also maybe bladder cancer and he is at home on hospice care. This is okay – he turns 93 in July, so he’s lived a long life. But my mom doesn’t want to go to Pittsburgh before he dies. She says she’ll just wait until the funeral. I offered to go with her, but she says traveling is too tiring, too hard. I think that perhaps she wants to show her family how good she is doing and that takes a lot of mental, emotional, and physical energy. Energy she doesn’t think she can expend twice in a short time period.

I would love to see my mom be able to write, spell, or at least type. Imagine the freedom if she could put her thoughts down on the computer/paper; to tell us how she is really doing/feeling. I read a lot of stroke blogs – blogs by survivors and/or caregivers and obviously the survivors writing the blogs are able to type and spell. Some of them have worse physical ailments than my mother, so I should be thankful that she can walk just fine, get around the house just fine, etc. but I still think of how freeing it would be for her to do something as “simple” (for us able-bodied/able-minded folks) as typing an email. And yet, when I see her, typically every other weekend, I don’t ever try to work with her on this. Instead, we just chat or watch TV or share news/gossip, or watch Sophie play with Papa. And on the weekends I don’t have Sophie, if I can’t afford to go shopping, I stay home and do chores. Because all my mom can think of to do is go shopping.

I’ve given my mom Sophie’s old Kindergarten workbook. I gave it to her back when she came home from rehab. And it has vocabulary stuff and spelling stuff and math stuff. And I told her she needs to practice. It’s not that she’s only as smart as a kindergartner; no, that’s not it. Her mind seems to work just fine – every time we are with Sophie, she shakes her head and we look at each other and laugh. Because it’s like déjà vu for her, the mini-me. And we share looks and knowing smiles when Tom does something silly. “Oh, men” we seem to say. We’ve always been really good at that: reading each other’s minds. I’m actually almost a hindrance because I automatically know what my mom is thinking and/or trying to say so I tend to finish her sentences. I need to NOT do this and let her come to the words on her own. Though I’m sure she gets plenty of practice with Tom because he rarely knows the direction she’s trying to go in LOL. Anyway, the Kindergarten workbook could help my mom practice spelling and writing, adding and subtracting…but does she do it? I don’t know. Tom doesn’t force her to do it or make her practice. When he comes home, she’s prepared dinner (or at least planned it out – I’m so thankful she can do this) and they eat and chat and then relax and watch TV/read. I really don’t know what kind of private conversations they have; it’s none of my business and they are private people. That is to say I don’t know if my Mom is really able to tell Tom how she’s feeling/what she’s thinking on a deeper emotional level.

I talk to my mom on the phone and I still get great enjoyment over doing that simple thing. Some days she is as clear as a bell but when she’s tired she does tend to mumble and have a harder time understanding my stories. She is very good at the regular pleasantries though: “Hi, how are you?” “How are you doing?” “I am just fine.” “How is your day?” “Yes okay that sounds good.”

I think that Tom and I have both come to accept this “new normal.” That this is Mom now and she can’t say everything but we can communicate with her just fine. Sometimes acceptance is a dangerous thing. It leads to laziness.

I wanted to become a stroke advocate and yet I am not. I did a LOT of research at the beginning and I DID find stroke groups in the area, and I did find a bus that my mom can take to the store or to the rec center but she has done none of these things.

One of the stroke groups is having a walk on Saturday – you donate $10 to some stroke foundation and get a t-shirt. Walk around the park for a mile or as long as you can and then go home. I thought about doing it, in honor of my mother, but now Sophie is having a friend spend the night so….Also, how does that help MY mom? How does that help be an ADVOCATE? The National Stroke Association is currently running an “ACT FAST” campaign as May is Stroke Awareness Month. I thought about doing it, but all you do is put your name in and ask for donations. Okay well donations are good but I want to DO something. Listen, I hate when people on Facebook put those cryptic messages like the bra color thing that was going around last year maybe to raise awareness for breast cancer. How is “White!” “Black!” “Tan!” going to raise awareness for breast cancer? As Plain Jane puts it, aren’t we already AWARE? If you’re putting your bra color up on Facebook AND you’re donating, well at least you’re donating. But just putting your bra color up there? That does exactly nothing. What does it MEAN? There are other kinds of things that people post on Facebook that don’t DO anything but I don’t have another example right now.

So yes, I agree with the National Stroke Association that folks do need to be aware of the warning signs for stroke. And they do need to know what to do if they see those warning signs in a loved one (call 911). And they should be prepared to know where the nearest stroke center is to tell the ambulance to go there. But how does that help my mom? How does that help her get more speech therapy when she has two working relatives and can’t drive and is paying $600 a month for Cobra health insurance for the next year because Medicare health benefits don’t kick in until you’re 65 no matter what?

I suck.

Happy Friday.