A common question I am asked about my sister...
and yet there is no easy answer to the question. How she is can differ from day to day, but mostly things stay the same... a snails pace would better describe it.
It will be a year in August since this all began, and while there have been many positive changes, many things are the same, or perhaps worse?
I'm not sure if anyone truly knows a timeline for Deb's progress, or if they have a speculation of her recovery possibilities at all? There is no clear answer for us as we repeat the same answers to the same questions Deb asks, day after day.
Tuesday was a day of pampering for Deb, though even she doesn't realize it. Most of the time she thinks she doesn't have time for herself or is asking where we are meeting the boys. Constantly I remind her where the boys are and that this is about her, but as the day wears longer and her fatigue sets in, the questions seem to multiply and repeat. The confusion apparent, I try and reassure her of what is going on. Sometimes it works, other times she is calling or texting Gordon.
While getting her hair done, she is searching for Amanda who has put the color in her hair, I continue to say she is right here, right next to us, but Debbie is convinced she is not and is heading towards the backroom where nobody is, I call her again and she comes back and sits down angrily, but is sure that is not who is working on her hair. I try to just distract her...
She loses her patience with herself when she is tired also, sometimes throwing things, including her purse or wallet as she is in search of something she is sure she lost. It is sad and I try and save her from this torment by searching with her for whatever it is she needs. Even when we find her phone, if that is what she was looking for, she says that is not the phone she was looking for and now she lost another one. I try and tell her she hasn't lost any phones, but again, her brain is telling her differently. I can't even imagine how she feels with all this confusion a part of her daily life.
At her 3 month post radiation appointment I walked into the room with Deb in tears. Learning that Dr Chao just informed both Debbie and Gordon that after having 5 weeks of radiation it looked like the tumor had grown! But they are not sure...
WHAT? Did he just say she's gone through all this and it looked like the tumor grew?
I wanted to cry, in fact I did, but toughened up quickly to be supportive for Debbie. At this point they were unsure of what was going on and I didn't want to add anymore doubt into her thoughts. She cried endlessly, speaking of her young children, we tried to remind her that they were grown, but even that was not helpful. The next day Debbie did not remember this appointment, and I guess that could be a blessing for her since there is no reason for her to worry until there is something to worry about...
They decided the board of doctors would meet to discuss Debbie and the options, after another week of wonder, Gordon spoke to the doctors who claimed it may be swelling? And said they will do another MRI in 3 months, to which Gordon replied no, how about six weeks... He is such an amazing support system, spouse and advocate for Debbie. Always looking for what is the next best step for Debbie.
There have been some highlights too that I have noticed in my days with Debbie. There have been things she does remember, new memories that seem to stick.
If you think you have problems in life, or things are too difficult, just think of the confusion Deb lives through each day not knowing or remembering from minute to minute. Just think about how Gordon has dedicated his life to taking care of Debbie and getting his wife back, and remember your life isn't so rough after all.
I do this for my sister and Gordon because she is my sister, but also, because I know she would have my back in any life situation, and always did. She would be angrier with people that wronged me than I was, she would be more defensive of me then I was and I'm sure she would be standing right next to me if the tables were turned.