Holidays, graduations, out of town guests, kids coming, kids going, meetings, appointments…! April and May hit like a tornado and things have yet to stop spinning. As the saying goes.. the hurrieder I go the behinder I get. I didn’t even look at my computer for a month and a half and I only got a few peeks a week the rest of the time. Then – nothing! I have only one thing on schedule for the rest of this month.

Now I am wondering what to do next. I have shared my journey since last fall to make arrangements to bring my husband home using the Money Follows the Person incentive program. Dick’s discharge date was to be July 11. But that is not going to happen. Our state changed who was in charge of that program in the middle of the process so there was a lot of confusion. The seemed to be willing to offer a lot up front but I waited and waited to get a commitment of how much in home assistance we would receive. In our final meeting a whole new set of people comprised those in attendance. I had all my ducks in a row with doctor appointments, VA papers filed out, home visits and PT/OT evals completed. The MFP had packets of papers prepared which explained all the benefits that Dick would receive. My minimum of in home assistance was met. It took over an hour to go through all the paperwork. THEN they tell me that they don’t think it is a safe discharge because I am the only one who is assuming full care of Dick! Why they had not been more forthcoming with that info is beyond me or anyone else who knows about it can understand.

This has left me very disgusted and downright angry. I figure that it is my business and responsibility to determine whether or not Dick comes home. I have been very cautious through this whole process to not jump into something that I cannot handle. To have some strangers randomly make that decision is disturbing. Especially so when I have done my homework and determined just what I would need help with so that it would be a safe arrangement for the both of us. I did challenge them about it. Their only answer is to have at least two more people to come to a meeting and agree to assume full responsibility for Dick. I do not want anyone else to have to assume that sort of responsibility for him. I have a support system in place to help me provide Dick’s care but I cannot imagine asking someone to assume my job. When I am angry I shut my mouth. I have taken the last couple of weeks to digest this and cool down before making a fuss. I don’t want to jump into a decision that I will be sorry for later.

So here I am having made the decision to bring Dick home with assistance feeling extremely disappointed. I had even done some trial runs just to see how our days would work with him home. It was hard without help but I sure enjoyed having him with me. I had begun to rearrange things to clear a bedroom for Dick. I just don’t really know what to do now. It is still possible for me to bring Dick home of course. However, I will not have all the upfront things that MFP would have provided and possibly not as many in home assistance.

When my kids were little we used to go camping every year. For the rest of the family this was vacation. For me it meant doing all the work I did everyday but made a little harder. In the same way having Dick in the nursing home does not relieve me of his care. Sometimes it is just a little harder. I still have to supervise his care and often I still have the heavy care as well. I do have more flexibility it is true. But I miss out on Dick’s company at home and I have learned to dread sitting in that place for several hours every day. There are tradeoffs.

Dick is extremely disappointed. Then when he is in one of his confused states he nags me about when I am going to take him home. Through this process I tried very hard to keep Dick from knowing what was going on just so he wouldn’t be disappointed. But there were three different agencies sending people to evaluate him and everyone kept telling him he was going to go home. Of course I am the one he blames. He does not understand all the background work that goes into his care.

In the meanwhile, Dick’s mental condition is still up and down. He has not followed the regular progression in his memory loss. They say that more resent memories are the first ones to go. That is not so with Dick. He remembers what things have taken place recently though he cannot seem to understand whether something was yesterday or several days ago. It is things like our wedding that he does not remember. He knows we are married but even looking at the pictures he does not remember the event. I am not sure that he remembers our motor homes even.

I think the thing that bothers me the most is the feeling of no one else really understanding our situation. It is easy for family, friends and even professionals to come up with what they think is the easy solution. Unless you have been through all this it is impossible to really understand all the shades of grey. So just because someone else makes a decision for me I cannot just accept it. I can see the situation from more angles. In truth I do not believe there is a better choice for Dick’s care. Dick home or Dick in a nursing home – both choices have equal pros and cons. I now stand in limbo.