We are going through a transition and I am both re-energized and deeply burdened by it. As some of you might remember, Lauren took himself into the bathroom and tried to make a transfer on his own without the wheelchair brakes locked. He fell and was diagnosed with a compression fracture--the second fracture of this nature since his stroke. (In these fractures there is not actually a bone broken--the vertebra in the affected area of the back are compressed together leaving limited space between the particular bones of the spine that are affected. It is a painful injury though.) That happened the last day of October after a particularly gruesome week for me on many levels. After the firefighters came to get him up, I tried to keep him home but by the following day, I couldn't even get him up out of bed so on Nov 1 he went into the hospital. He hasn't been home since.

Since that time Lauren has been in the hospital, inpatient rehab, nursing home rehab, hospital, back to rehab, hospital, back to rehab. That is where we are now with an expectation that he will transfer to a nursing home bed next week within the same setting where he is currently getting rehab. It has been a weird and difficult transition. He has done well with rehab recently. He transfers easily with physical therapy and me but the aides have continued to have some trouble so, no matter how much we try to get rid of the hoyer lift, it keeps finding its way back into the room, much to my extreme irritation. There are some aides who have shoulder injuries and I totally get that they need to use it. Once it's there, however, everyone keeps using it. So this is the next thing I'm going to have to address with the director of nursing. I'm done with dealing with all the others on this matter.

Aside from that irritation, the place where Lauren is now is exceptional beyond words. It is a different facility from the one he has been in before and it has a 5 star rating from Medicare (the highest that can be achieved). Everyone treats him with the utmost respect and kindness. They have a chef on staff and are contracted with a local restaurant company owner who provides the food and menu. Residents can order their food like at a restaurant from a menu and get pretty much what they want within the limits of the menu. Every problem I have addressed has been corrected immediately with the exception of the above. Of course, the place is expensive beyond words too so I have personally committed to 2 yrs (just in my own head) to see how things go and how long I can afford this place. For now, it was essential to find an acceptable facility to ease the transition for him and me.

In some ways, I keep thinking I can bring him back home. Perhaps that will always be true, as Sue once said. Actually, I know I could physically do the work better than they do...for a while. The problem is that it never lasts. I have gotten injured and Lauren has made devastating decisions and there are the many UTI's that continue to plague him. The problem is that I am only one person and right now he requires multiple people to assist with all his care and they get to go home at the end of the day. Every single person around me who really cares as well as his rehab doctor, who knows him best of all, feel I need to make this transition. Most of them have felt it for the last 3 years. I feel I need to make this transition. So why does it feel so rotten?

For me, when I am home I feel I need to be with Lauren. When I am with Lauren, I am thinking about all the things that need to get done. I'm trying hard to balance those issues but it is difficult. I have a lot more freedom with my time--the ability to agree to do things outside of Lauren's care--but with that is the guilt that my increased freedom comes at the cost of Lauren's freedom. His confinement makes for my freedom. Not fair and not right. I can't make it okay.

However, as the physical burden of Lauren's care has been relieved, my own body is now screaming at me. I twisted my knee in a transfer with him just a few days before his fall. I've been trying to let time heal. It has improved a lot but still pops and hurts when I straighten it out. Left shoulder hurts at night so I can't sleep on my left side. Wake up with low back pain. Just remembered I've failed to get my colonoscopy--one year past due. I had polyps once so I really need to keep up on that. Oh yes, haven't seen the eye doctor since Lauren's stroke and i have growing cataracts. I know you caregivers understand this. I finally saw my internist and am getting an MRI on the knee. Taking lots of Advil per her instructions and we'll see where to go from there. Next up, I need to schedule that colonoscopy. Oh, and it might be good for me to take down the Christmas decorations. Too soon?

Keeping on keeping on. ~~Donna