The Beat Goes On..

As you can see, I've not posted anything new lately. That's mainly because there's not much new to tell. The unending quest to get some help in here before I do some serious damage to my 40+ y/o back is just that; unending. However, things are not always as they appear. I was visited by a Department of Health "Angel" on Wednesday. She did the elusive "Medicaid screening", which will enable the help to get here at some point. He(the hubby) met the criteria, which I had no doubt that he would. So that's one more step toward my quest.

How did I get that done so quickly you ask? I call it....divine intervention. Sometimes prayers are answered, in just the way we need and when we need them. It is true that I asked that my husband be put on "the list" to be screened and he was on the bottom of that "pile". My angel pulled his packet from the bottom, called me to set up an appointment because of another angel intervening on my behalf, and told me that because me waiting for the usual month to get this done COULD cause problems with my employer, she had the authority to "prioritize" due to extenuating circumstances. When she asked if my waiting would cause an "issue" with my employer, I started to ramble about how I had gone from here to there and back and what was going on. She interrupted me with the following statement: "Mrs. Freeman, I don't mean to be rude, but I have to cut across your story and tell you this; I have the authority to bump someone's place in the line as I see fit IF there are extenuating circumstances, so just tell me there is an issue with your employer and we can get on with it." I said, "OK..there is an issue with my employer if I have to take off for a month." She said, "good, I'm on the way and should be there in about a half hour to conduct the screening." WOW. God showed up and showed out and so far so good. The cavalry should be arriving on this coming Tuesday, May 10th.

THE WORK

I do less work at my actual job than I have done here at home over the last week. This type of care taking is hard work and takes a toll on a not-as-young-as-you-used-to-be body. There's a lot of pulling and tugging and moving and washing and cleaning involved. Much more than I care to do on a daily basis. It seems from the time I wake up until I put him to bed for the night, I'm busy doing something. Whether it be changing a depends or changed his clothes or linens or getting him up into his wheelchair, it's always something. I feel that I've done nothing but do laundry since he got home. Between "bathroom accidents", eating mishaps, and emesis(a nice medical term for tossing your cookies), I've changed his bed at least a thousand times(ok so it's not a thousand but it's got to be close to that either way). I have gotten faster at the bed baths and diaper changes. This morning I did a complete bed bath with 2 (yes 2 because it's inevitable when you get a clean diaper on, everyone, infant or adult, must mess it up immediately), got him dressed and up into his wheelchair in 1.5 hours. Not bad for someone who has only been doing this again for a week.

My biggest frustrations come with meals. I've tried so hard to NOT feed him baby food. I just feel wrong about it in every way. So I've fought it with everything in me but he's not eating the "adult" food well. His swallowing just isn't up to par and I'm afraid he's losing too much weight even with the overnight tube feedings and I don't want the folks at dialysis to think I can't take care of him and do something I don't even want to think of. I broke today and fed him the Gerber's 3rd foods line. I think it was harder for me than it was for him. I didn't let him see the jar, I heated it in the microwave in a separate container. Amazingly, he ate all of it along with a container of Gerber's Sweet Potatoes. The issue has been that he will "pocket"(this means hold food in the space between the cheek and gums)the food and continue to chew it intermittently. The obvious danger in that is he could get choked and it can also cause "thrush" which can be painful. No "pocketing" with pureed or baby foods. So I've resigned myself that this is the new reality for him and I must do what's best for him regardless of how much I hate it or know that he would hate it if he were more aware of what's going on. He made the usual faces but continued eating it without question. Now I could puree' his meals using the same foods that I am consuming and I will do that from time to time but in this world of "microwave mentalities" and in the interest of time when I return to work, I will probably resort to Gerber's more often than not.

ACCEPTANCE

Often times when you're dealing with a loved one whose in failing health, you may struggle to hold on to the "old" them. I find myself doing this more often than not. It's hard to accept that the person you love is no longer that person. I have fought to hold onto the man that I married. Denial is a strong thing. It clouds your vision and keeps you from making the right decisions.

I have moved to another level of acceptance in this quest to give my husband the dignity he deserves. He's not the man he once was. He may never be that man again in this lifetime and I must accept it, like it or not. It's a future that none of us want to think is reserved for us. But taking care of someone who is in this circumstance, really makes you realize that none of us are promised good health throughout our lifetimes. It also makes you ask that unimaginable question; "who will take care of me if the need arises?" Often times, it's not the person you would think. My husband thought that his siblings would come to his rescue back when he first became ill. I wasn't doing what he wanted nor was I doing what he thought was right and he thought he could call one of his siblings and they would swoop in and carry him off into the wild, blue yonder. He quickly found out that was not the case. He was stuck with me. We argued. We butted heads. We ran into brick walls, known as stubbornness, at every turn. I cried. I laughed to keep from crying. He cried but he didn't laugh. The laughter was gone for him. There was nothing funny about growing old or getting sick. Although I didn't sign up for this, I knew I couldn't walk away. That's what he expected. That's what he would have done. I couldn't be him. No way! Not after preaching to him about how ridiculous it was for him to walk out on his first wife because she was doing what he was doing. It was my job to restore his faith in women, I thought. Have I? I certainly have shown him what it's like to love and do the right thing in the face of adversity. Would he have done the same? Probably not. But in all fairness, he's not wired the same. I've done what I thought to be right. That's all that I can do.

Each step is a movement toward what's necessary to let him go. Little by little, piece by piece, I will reach the peak of acceptance. That's when I will be able to let him go. The man I married is long gone. He doesn't exist anymore. He "died" in 2003 after he collapsed at work that fateful night. The man that emerged was not even close to the man, that just 2 months prior, had said "I do" in front of our families and friends. He fought to keep his independence. It was a monumental struggle. This time, there's no fight left in the tiger. He's accepted his illness for what it is; chronic and unforgiving. I, on the other hand, continue to fight to keep him. Not quite ready to let him go. I just buried a child 4 years ago. How do you bury another loved one so soon? I wasn't ready. I'm selfish. Even though I knew when I started dating him back in 1984 that he wouldn't be around to watch me turn old and gray, I wanted him to be. I have gotten grayer over the years, so I guess that part has come to fruition. But there will probably be no holding hands in matching rocking chairs on the porch for us.

Each day is a day of acceptance. That's why God gave us this time together. He's preparing me for what's to come. He's giving us time to make it right. I'm glad that I can recognize it for what it is. There was a time when I couldn't have done that. Losing a child puts a lot of things into perspective I suppose. Perhaps this time will allow me to let go with a sense of fulfillment and know that he knows I loved him beyond what he could ever imagine. I tell him each day, usually in the morning when he's more alert, that I love him. He still says it back to me for now. I hope he realizes that there are good people in this world and he married one. I hope I have restored his faith in women and given him a gift that not everyone can afford. LOVE. Unconditional and determined. Full of hope but moving toward taking what I can get. I relish the "lucid" moments. The recognition that's still there at times. The love that comes through those baby browns at times. Sometimes he looks at me with a look of "I can't believe what you're doing here". Like he never thought I'd stay and see him through. Like he's trying to figure out what makes someone do the things I've done thus far. He'll never understand. He's not wired like that.