Being a gourmet cook, Charlene was very anxious to get back into the kitchen again. Her mother would cook all of the meals and thought that Charlene couldn’t or shouldn’t have to cook because of her paralysis. However, I’m sure it had something to do with too many cooks in the kitchen, or something like that. The way I look at it, therapy is hard work, and aggressively pushing Charlene to do more than she thought she could didn’t make me her most favorite person at times, but it did help make her the amazingly independent person that she is today. The lesson to learn here is that it is okay for caregivers to be a little selfish.
We are very thankful for her mom’s help during those first 2 ½ years. It would have been very difficult without it. It took a lot of pride-swallowing to ask them to move in with us. I know that many caregivers have a lot of pride and do not want to ask for help, but you need to get over that pride because it will kill you — and then no one will be around to provide that excellent care to your loved one.
Charlene now cooks all of the meals, and prepares dinner parties regularly. It is certainly more difficult to cook since her disability. However she does it and does it very well. She loves cooking, and it gives her a purpose in life — making people happy by feeding them great food.
She also does all of the housework: cleaning, laundry, decorating and organizing. In fact, I can’t think of anything that she cannot do, which is amazing, considering she only has use of one arm, one leg, and less than 100 words! I know her recovery would have been negatively affected if things had always been made easy for her and didn’t have that selfish streak that sometimes a caregiver needs in order to survive.
In my opinion, exhibiting tough love can sometimes appear to others as being a little selfish. I am responsible for my loved one as her caregiver. That is something like being responsible for children. One day, they may want something that I do not believe is in their best interest, or mine. For example, my teenage daughter wants to borrow the car to drive to Palm Springs for a Spring break bash. In my opinion, it would not be in her best interest to attend, especially since she is an inexperienced driver. Drugs and alcohol are usually associated with parties like that, but most importantly, I have seen the “Girls Gone Wild” Video series advertised on TV. Also, the car is in my name, so I would be responsible for any damage or injuries that my teenager might cause. I know it isn’t fair comparing my wife to a teenager or children, however, sometimes I feel like this is exactly that type of situation. I don’t like it, but nevertheless, that is the way it is.
Sometimes when I feel like I need a break from my caregiving responsibilities (which is like once a week), I take a day all to myself and just do what I want to do, a selfish day all for me, but I feel selfish and guilty doing it (like I am cutting from school). I know that is just my caregiving side trying to make me feel some undeserved guilt. I have learned to ignore that feeling because I know I need that respite, and I don’t even debate it in my mind anymore.
I also reserve a Charlene date day for dinner and a movie. Sunday is church and we go out for lunch after church. The rest of the time when I am not working and on weekends I am with my wife at home. Twice a year, I take her to her mom’s or her aunt’s house in Central California for a week and we both have some time away from each other. We are fortunate enough to have a handicap van with a lift which friends can use to take her on outings, dinner or a movie. I don’t consider the days I give to myself as being selfish anymore because that is how I managed to go through all these years as my wife’s caregiver with a smile on my face. This is one reason why I believe that I never had to suffer burnout.
Taking care of your own needs first is critical to a caregiver. I’ve already shared how I attempted to survive those early days by occasionally traveling on selected weekends to my family’s homes that were located in different states. It was a special treat for me to get away from my reality and share my feelings with safe people who were not a part of my situation back home. I’m sure you can think of other ways to put your needs first, maybe by getting a massage, going to a ball game with a friend, catching a movie, going fishing or even just going to Starbucks to have a conversation with a pal.
I also mentioned how very important it is for a caregiver to find and attend a caregiver support group to be able to have a safe place to vent and share experiences and solutions to problem situations. It was there at my first caregiver support group where I learned that I needed to take care of myself in order to take care of my wife..
I remember back in those days that Charlene and I would often get into angry shouting matches with each other as our patience would wear thin. I am so thankful that those days are long gone and we now finally like each other once again and learned to take breaks from each other. As I mentioned in the last chapter, I think it is more difficult being caregiver to a spouse or a parent. Having to switch roles back and forth, wearing the different hats of a spouse or parent and a care provider can often cause even more stress than just caregiving a friend. 