The hardest thing was getting up on the morning after and not having anywhere to go!! I had spent the better part of every day for the last two months at the hospital….had just bought another 2 week parking pass on Saturday. What do I do with myself now?
Caregiving has been my life for the last almost 4 years. What now?
Monday Apr 21, Easter Monday was still a stat day for many places, including where Ken and I worked. I couldn’t call them until the next day.
I went online and tried to decide how I would tell my Smart Patient and KCC friends about it.
What do you say…..how do you say it? Do they even want to know…..I mean its awful news to hear…..they are either patients or caregivers themselves and they could well be them in the same boat. Should I share it? Who wants to be reminded of what the future could hold for them??
I did post it. Replies started flying in. It was very sad but incredibly uplifting in a way to read them all. These were my friends that really understood what life had been like for those years for Ken and for me…..they just knew. More tears.
I am addicted to those websites…..but now I don’t need them, do I. But I still feel like I know all those people, my online friends….perhaps there are still going to be questions that I can answer for someone. I don’t know but I have checked those websites everyday for a long time, it’s a habit, a routine every morning…..maybe I’ll give it a rest for a day or two. What more do I need to know now? Absolutely nothing, at least nothing that will help us. Do I want to know about a new trial or med that came along to late for him? I really am happy for all those people that have good scans and great results from meds….I don’t want anyone to go through this. Maybe telling others that are struggling at the moment that I understand, I really, really do understand, will help them, comfort them? Maybe I’ll just remind them of what could lie down the road for them…..what to do, what to do. Again I have to tell myself to stop thinking about this…move on. Go back to the pictures, clean the bathrooms, anything……
What should I do now? I don’t really have to get dressed, if I don’t want to. I can have yet another cup of coffee….which I don’t need. I could certainly clean up my house…..who would have thought that one person could leave such a trail of mess behind them. I had been going to the hospital by 9 or earlier each day, going to work from 1 – 5 then back to hospital until 7 or 8, then home. So I guess there really wasn’t that many hours left in the day to do anything or at least anything other than eat and sleep. Now I had all the hours in the day to do whatever…..
Why am I not having a breakdown…..isn’t that what I’m supposed to do? My heart is breaking and the tears flow freely. But is that all?
I started to reflect back over the last few months and realized that what is saving my sanity is the fact that Ken had not been here, in our home, for over two months! I was now used to coming home to an empty house, him not being here. I hadn’t had to grocery shop or think about dinners and other meals. I hadn’t worried about whether he was up and eating his breakfast. I didn’t have to phone at 12:30 to make sure he got up to have his lunch. I didn’t have to worry about phoning home and him not answering the phone…..had he fallen, passed out or ???
If he had been sitting at the table the morning before having his breakfast or in his recliner watching TV the night before, I’m not sure I could be coping with this…..very strange feeling. I was thankful he was in hospital. No, no I wasn’t…..that’s a stupid thing to think, isn’t it?
I did eventually get dressed and started going through pictures….we will definitely be having a Celebration of Life and we’ll need a slide show, right? My son came over, daughter got up and we started in on the pictures. This task is so incredibly therapeutic. We cried a lot. Why Dad….what did he ever do to deserve this? Why my husband…….why, why, why. We’ll never know and can’t even begin to dwell on it…..there is no answer. But we can cry and remember and we did.
The hardest part of the pictures is seeing him like he was…..when did he start to change so much? He was such a good looking guy, when did he turn into an old man? I know I knew he’d changed, how could I not, but that much? It made me think more about remembering him the way he was bc (before cancer) and not the way he was ac (after cancer). What a wicked, evil disease……
I can become a little obsessive with things and that is what happened with the pictures…..soon the kids were gone off doing other things and I was a mad woman going through old photo albums, going through CDs and those little card thingies from the cameras. Which pictures should we use, how many, ones with only Ken or ones with others, should I crop myself out of them. No, we need ones with the kids and me and all our family and friends. That’s why Ken was so happy in those pics….he was with people he loved, they needed to be left in. They would like to see themselves with him too, I’m sure….then they’ll remember that Ken too.
Life was so good…..did I appreciate what I had? I did, I know I did and was thankful for everyday, even bc. But what else should I have done…..is there anything else I should have done? Who knew what would be in store for us down the road. You can’t prepare for something like that without even knowing. Did I take things for granted, like that we’d be around forever? There must have been something else I could have done to make things even better than they were bc. Just stop….stop thinking about things. It wouldn’t have made any difference, it wouldn’t have stopped Ken from getting cancer.
More people phone, more food arrives, more flowers arrive.
My kids cleaned up some of the house while I did the pics. I’m sure we ate but couldn’t tell you what or when. Craig went home at some point, but when? It was dark out now…..where had the day gone? I was still sitting at the computer with albums and CD’s all over the place. Time for a glass of wine (or two).
The pictures made me cry. Why? They are such good pics, so many happy times! I want that back……I want it all back, I want Ken back! How could this happen??? Why us?
I looked at the time on the computer….it was 2AM! I needed to go to bed…..gravol is my best friend now, it makes me sleep. I definitely need sleep. I will feel better after I sleep, right?