Prior to Jim being diagnosed, we went through several years of turmoil in our marriage. Not really because either of us was being a bad spouse, but because our relationship was changing and neither of us could put a finger on what was happening, counseling wasn’t helping, and we were both frustrated. Ok. I was frustrated. Probably Jim was at times, but overall I can honestly say I was the one who broached the subject of something not being quite right with Jim. Things he would say. Things he would do. And then I would feel like a nagging wife because it seemed I was getting on him more and more. I was feeling disconnected and wondering what was happening to our relationship, our communication, our intimacy.
All of it seemed to be slipping away and yet we were both working on the marriage, trying to make the other happy, and somehow nothing was getting better. Nothing was putting us back on track. Jim’s memory was fine, but his cognitive ability to do things was declining. His ability to multi-task seemed to disappear without us recognizing what was wrong. It was more of he would lose his thought process while in the middle of something, especially if I tried to talk to him or ask him to do another task. His answers to questions were sometimes bizarre and at other times something so foreign to his natural demeanor. This went on for over two years. Two years of wondering if our marriage would be able to survive whatever upheaval was taking place.
But ultimately Jim wouldn’t survive, and in turn, our marriage died too. So I am left to contemplate and play over and over what I could have, should have and would have done differently. I am my own worst critic. It keeps me up at night. It brings tension and stress to my body on a daily basis. Still. Even after all of this time, I linger on times I should have been more patient. Times I should have seen what was coming just around the corner. Times I should have just sat quietly and taken in the moment. A counselor once told me I had to stop saying “I should” all the time. Obviously I haven’t mastered that advice yet.
But we are all human, myself included, and it is impossible to always do the right things or say the right things or control our emotions at all times. I regret much but I am proud of just as much.
Life comes at us fast. Pulling us in different directions and making us make decisions in split seconds. There are moments that will define us and we don’t always get do-overs. No matter how much we want to. No matter how much we struggle to do better, sometimes we feel as if we are doing worse.
Being a caregiver causes people who are not trained to provide care, to do just that. Think about how something that takes up so much energy, time, finances and commitment is usually a job we have chosen or have gone to school for. Maybe we got on-the-job training, but we were somehow educated enough to be able to do this thing well. For a lucky group, they chose that career path because it was exciting, or interesting or maybe they were just really good at it.
I became a caregiver to my husband with no training other than having two kids under the age of 10 and with very little guidance, support, or idea on what in the world was happening, let alone what was coming. I ended up having to quit my actual job to stay home with him. Again, very difficult emotionally to be taken out of the world I was trained to be in and suddenly I have little structure, no idea what I am doing or supposed to be doing, and definitely no time table. And the pay is nonexistent other than the gratification I was the one who was taking care of the man I love. It is no wonder that caregivers end up having just as many health complications as those they are taking care of. Which is why it is so very important to seek help, join support groups, reach out to churches who offer respite or can help with tasks around the house. Reach out to the Alzheimer’s Association. Talk to friends and neighbors and let them know you need help. They care but they don’t know what to do to help. Tell them. They won’t mind. Wouldn’t you want someone you care about to let you comfort and support them in whatever capacity they needed? Taking that first step is difficult, but ultimately it will become easier and will save you some stress and probably health problems.
It is so easy for me to look back now and be critical of myself. But sharing my lessons learned the hard way can somehow ease the pain I feel of not being a better spouse or caregiver to Jim. We all can learn from our lives, it is what we do with that knowledge that defines our character. I am on my own path of redemption and self discovery. Loss is hard. Surviving is excruciating. Let’s all keep in mind we can only do the best we can on any given day. And then reach out to others and move on.