June 10th – It’s been a few days so I figure it’s time for an update. Nothing new on the transplant progress. Still clearing the insurance and getting all the doctors to sign off on it. He even has to have the dentist sign a paper that says he’s in good condition for the transplant from a dental angle. He had another EPO injection Tuesday but we haven’t noticed that it’s really done much to help this time. He does tend to overdo it when he does feel well so then it’s hard to tell. He’s gained a couple pounds as we’ve found the new go to ice cream place in Portage. He’s having pain in the evenings again so tonight I’ve having myself a little bonfire and he’s sleeping. Hopefully tomorrow night he’s up to seeing some friends that are visiting the neighborhood this weekend.
A close friend recently lost her husband unexpectedly; only days before he was set to officially retire. When I’m struggling with what’s going on, I try and remind myself that at least I still have him; or do I?
What I have is a shell of the man I know. He doesn’t think the same or act the same. He’s argumentative, forgetful and sometimes hurtful. While everyone is planning for the weekend, I don’t dare get my hopes up. Chances are that after I work all day, and come home hoping to do something with my husband, he won’t be up to it. He has the energy to get up at 6 a.m. and go for a walk, do some yardwork and its downhill from there. If he feels good, then he’s sure to over do it and by the time I’m free from all my obligations, he’s either in pain or just plain exhausted and ready for bed at suppertime. I know it has to be horrible for him, all the pain and disappointment of not being able to do what you always have done. But it’s also hard being the one that everything falls on. Doing everything you have always done, plus what they typically do and then be the caregiver. Keeping the doctors moving, keeping prescriptions filled, and keeping track of three medical charts. Knowing that if you mess up the pills and don’t get them refilled in time that his pain is your fault. Then there’s having the alarm go off every two hours 24/7. Being alone but not.