I belong to several online an offline, formal and informal support groups. Obviously, I would not share any person’s life or circumstance without their permission. I share my story because it is exactly that, my story from my perspective and I own that. When people tell me that I am misinterpreting something or that I take certain things too seriously, I remind them that they are not in my head or in my experience and they need to keep their opinion to themselves. Their opinions are based on their experience and their head, so it has absolutely nothing to do with me. I will say, that one of the things that I see the most, and that most books don’t emphasize enough, is the toll on families from taking care of a loved one.
Let me set one scene for you: you have a family with several children. There is always one family member that takes care of the loved one, there is one child that helps and there is always one family member that seems to stay away. This will, no doubt, cause resentment with the person taking care of the sick person.
There are some that say that the one that stays away does not have the stomach for it. Well I have news for you. If you would have asked me a couple of years back if I would volunteer to take care of my parents, watch my dad die and be a witness to my mother slowly losing her mind and all her faculties, I would have said NO. And now, here I am. So for those people who think they don’t have the nerve to confront the reality of their loved ones, either grow a pair or go away. You have nobody to blame but yourself if you did not make an effort.
Now let me set the second instance of family trouble: You have a family that takes in a person that has a terminal disease. The family has to completely change their lives and routines to help this person through that process. They do it with all the love in the world…and then pressures come in. From missing their old lives to having nosy family members barking orders, and everything in between. This is my advice to you if you know somebody going through this: keep your advice to a minimum and just ask how you can help. Sometimes these people just want to vent, others might need to get out for an hour. Your opinion does not contribute anything. A shoulder to cry on, a person to hang out with, even if all we talk about is the struggle we are going through, or just a little help hanging out while we clean an old closet, are worth a lot more than your ideas or opinions.
Those of us who are taking care of a loved one feel very isolated. We see everyone else moving on with their lives while we are stuck on neutral, or seemingly on neutral. We can no longer do any spur of the moment things. Every outing, every party, every event has to be planned weeks, sometimes even months, in advance. You might think nothing of asking us to go to your house. We have to pack, plan, prevent and ensure for the health of this one family member. As much as we appreciate the suggestions and the fact that you care, we really can’t just get up and go. And sometimes, I admit, we are just too tired to want to do anything.
I have not even talked about the most important toll this disease takes in families. In my case, this is my mother. I feel absolute responsibility to keep her healthy, clean, fed and taken care of. There are hundreds of decisions to be made daily. I am averaging four hours of sleep and I cannot tell you when was the last time I had a full check up. My daughter comes and helps. She is also averaging four hours of sleep a day. She works and has other interests. My husband works and has other interests too. We are all exhausted, burned out and just plain tired. We argue, snap at each other and have entire days when we barely speak to each other. After a few days of this, we will talk, cry, bitch and mope. Funny thing about the self-help movement is that the one thing they tell you is not to dwell on the bad stuff. Guess what? If you don’t talk about it and share your feelings with people who are going through it, you will end up sick or worse, you will stay mad at those who live with you.
In the end, we let all our frustrations out and we continue. The one thing we all have very clear is that this is not her fault. We don’t blame her, we don’t get mad at her. We don’t always know how she is going to react to different things and we try to keep our little tantrums far away from her. We want her environment to be cool, happy, funny and light. That is the most important thing. In order to achieve that, some days, we have to make great efforts and that takes a lot of time and energy.
If you have a family member taking care of a loved one, don’t think you know what they are going through. You don’t. In fact, as much as we compare notes, none of us caretakers know exactly what the other ones go through. Every situation is different. I have friends who have a family member that no longer speaks. I know one person whose loved one thinks it is cute to poop in public. I don’t know what that is like. I can imagine and I can give her a shoulder to cry on, but I really don’t know what she is going through. We all have struggles, even when we are not the one taking care of a terminal patient. You can let your friend know that you support them. Don’t ever tell them you know what they are going through, because you don’t. More importantly, you don’t know how they are going to take it. I have a friend whose life partner is very ill. The other day she got upset because someone made a joke about going into a “coffee coma”. Now I don’t find that phrase particularly offensive. My girlfriend was livid because her loved one has been in a comma twice. I personally have no problem if somebody says that in front of me. She does. My brother was in a comma before he died. Then again, it did not affect me the same way it affected her. That is the key. It is not just that you don’t know exactly what they are going through. It is also the fact that two people can react completely different to the same situation.
Unless somebody asks for your opinion or advice, keep it to yourself. I think it is cute when somebody tells me what to do. The last time I looked, there are three people and one dog looking after my mother. All three of those people have other responsibilities that also need to be taken care off and that we cannot forget. Your two cents on how to save time, make money, deal with situations, is not needed at the moment. So why are you trying to tell us how to do anything? Did we ask? Do we care? It is very easy to come from the outside and think you can handle this. I can’t help but notice that you are not dealing with this so you have no idea what the day-to-day is like. We understand you have good intentions. Intentions do not give me an extra hour of sleep or take the stress of this life any easier.
So in summary, I give you three pieces of advice if you have a friend or family member taking care of an ill or terminal loved one.
- Grow a pair and help out. Don’t just visit once a month or a few times a year.
- Don’t offer advice unless you were asked for it.
- Volunteer a shoulder to cry on, an hour of your time or your presence. Ask “What can I do to help?” and actually do it. This, my friend, is worth more than anything.
For all of you caretakers out there, I can understand your frustration. We are all on this together and we can help each other, and all those around is, understand what this is like. One step at a time, one post at a time, we can let them know what this is like and how they can help. We cannot assume they know because most people don’t. If you have any other suggestions on how people can help you deal with taking care of a loved one, leave your comment below. If you know someone who is going through this, share our story. Hopefully we can help.
(This post was inspired by an anonymous person who posted on a support group about their feelings on family dynamics. It is meant to provide some guidance to those who are not in this environment and have no idea how to help a friend or loved one carry this load).