It sounds so easy. Take your loved one to a place that promises to watch them and care for them and allows you to go home and relax and focus on other things. How difficult is something so needed and so good?
We were given a 30 day respite through the VA this month. I was elated. The kids and I would be able to do the whole back to school routine, we would get to go to family camp for the fifth year, we would have time to get stuff done around the house (Ok, now you know I was really dreaming) and we would get to just breathe a little.
If you have never been to an assisted living type facility before, you have no clue what I am about to tell you, and it will most likely sound like something that should be shut down. But, if you have, you know what I am about to write.
You know the absolute guilt and heartache that come with the very first step through the doors. The smell of urine permeates through your whole body and clings to your clothes. The shock of seeing person after person almost in a comatose state either in a wheelchair or a bed. The horror of thinking how awful this place is and that you should be turning around and running back through the doors….yet you stay. You unpack clothes and try to seem happy about all of this. You see the dirt, the grime, the locks on everything, , the coded doors, the list of simple activities you can not believe that your husband would be happy to sit through….. It reminds you of a horror film but you are living it and you don’t leave. Well you do leave….alone.
You leave and cry and cry all the way home. The perfect sad song comes on the radio and you turn it up and cry even harder.
When your children go to visit the next day, you cringe again as you walk through the doors and see it all anew through their eyes. The moans from a bed as you pass, the loud daytime TV shows, the medicine cart, the food cart, the alarm going off when the door is opened incorrectly, the wandering, lost souls down each hallway. And they tell you what you already knew: Dad should not be here. This place is awful. We cannot leave him here! Yet, he remains and you return to the home you shared and the bed you no longer share. And you must kick into super awesome Mom mode. Think fast even though you agree with what they say.
“Was Daddy happy?”
“Did he ask to come home?”
“Did he say he didn’t belong there?”
“Did he ask when he could leave or seem sad when we were leaving?”
“Well, we have to understand that Dad is content and likes where he is. Maybe he wouldn’t have a year ago or we wouldn’t want to stay there, but where he is right now mentally is what we have to think about. And he is fine. They are nice, they are looking out for him, he is laughing and we are getting a break.”
And there is the click. The change. The acceptance, the understanding that no 11 year old or 14 year old should have to fathom until they are old and grey themselves.
Jim is happy. He has a routine. He has activities. He has people to talk to.The staff watch out for him and know his signs. He is satisfied in his own little world and is happy we can join him sometimes but has not asked once to come home. He has called to tell me he misses me but he doesn’t ask when he is leaving. He hugs me and I hear from the staff he talks about me all the time (and the dog and the kids) but he is contented to just be where he is. And where he is is a locked unit an hour away with patients much older and much further along. But he has progressed enough with the disease that none of this connects in his riddled brain any longer. And it is sad. It is sad to leave him. It is sad to know he accepts this new home (albeit temporary) and it is sad to witness his behaviors that mirror the other patients who don’t seem to acknowledge the world around them.
Did he really go into someone else’s room and take their photo album and put it in his room? Did he really get agitated because he was outside too long? Did he really not want to participate in a group activity? His changes cause our changes. His decline is our decline.
This short reprieve has been so, so wonderful for the kids and I on just about every level and in every aspect imaginable. The laughter and the carefree conversations make us acutely aware of how tremendously stressed we were without even realizing it. To acknowledge this is hard. It feels as if I am somehow betraying the love of my life. But when you are living your life, the best thing you can do is be honest about what is happening, what eases your burdens, what brings a smile to your face and what causes the stresses to disappear.
Life doesn’t get magically perfect because Jim is out of the house. I still worry a great deal about him, about finances, about the kids, about all of the things I worried about before but without having to keep a constant watch over him. Without the children fretting about him getting agitated or misplacing something they need or all of us keeping an eye and ear on guard for whatever is about to happen next.
None of this is easy. None of this has a good answer or a happy ending.
I spoke with my Dad tonight and we were discussing finances and planning Jim’s care (a typical conversation these days) and he asked me, “What about a year from now?”
And for the first time in my life I really understood myself in a clear and concise way. I told him ,”I can barely think about the rest of today or tomorrow. The most I am going to hope to even fathom thinking about and planning for would be six months from now. There is no way a full year would ever come into my radar.”
I am so grateful for this short break from the daily task of Jim’s care and I do wonder what we will do in a few weeks. But I cannot dwell on it and ruin the time we have right now. I am good. The kids are good. Jim is good. And that is all I can ask for today.