More Than Enough

I need to write to remind myself of an important point, lest I drift backwards into self-doubt and depression: I am okay. I am doing my best, and on some days, I need to take comfort in the fact that my best is much better than those who do nothing but complain. And I'm giving myself this pep talk because I got flustered one evening last week in a true Charlie Foxtrot moment. By the end of the night, I had let a lot of that anxiety go, but I decided to write about it anyway so that I can have this to reread whenever I want to crawl back into a shell of self-loathing.

I am doing more than enough.

Instead of providing a turn-by-turn account of the events of the evening prior to that moment when I was running back and forth between answering the front door, helping my Mom in the bathroom, and giving my kid a bath...I will simply say there was a lot going on. And I was by myself with my 70 year old mother and my 2 year old daughter. Even if my choices at any given moment are questionable, at the end of the night I can at least say that I did something other than complain.

I hit the wall at the beginning of this year with my emotions, and I know that the stress of my mother's illness has been difficult for everyone. Chronic illness can devastate lives in so many ways. It ruins relationships and it can have reverberations for years. I have been stressed to the breaking point trying to manage caregiving and parenting, so much so that I essentially dropped out of a lot of activities and commitments. I don't lament the need to take such a drastic step, but I have been frustrated that it came to this point.

Attempts to address some of our issues as a family of caregivers unearthed a lot of resentment and unexpressed feelings. It also made things worse...but perhaps the only way to address an issue is to expose its ugliness. I am still open to the possibility of making peace, but I have accepted that it might not happen. Therefore, for anyone else who might be going through a similar situation or who might have to face the unforeseen chaos of chronic illness, here is a quick list of some of what I have learned these past eight years:

1. Communication is everything. Communication is everything. Communication is everything. And communication is not just about telling folks your positions or how you feel about the situation. It is also about how you listen. I spent a great deal of time communicating information that was not being processed or that was being ignored, or perhaps most importantly was not what folks wanted to know. I honestly do not have any tips about how to get others to listen, but if folks are not speaking to each other, listening to what is being said, or accepting the truth of what is being expressed, then you will have misunderstandings and chaos.

2. Caregiving is a 24-hour job and it involves everyone in the family. Everyone can contribute and no contribution is too small. However, if there is no contribution then that is a problem. When there is a need for an outside caregiver, it does not absolve anyone else of having to take part. It might diminish certain duties, but family care is still vital.

3. Offering criticism is not the same as offering assistance. As far as I am concerned, it is the same as doing nothing. Opinions are assholes...everybody has one.

4. Most non-immediate family and friends have no idea how to offer help or to even express support. So I don't hold that against them. I actually appreciate the benign gestures of just checking in because it helps to know that folks are thinking about us even when they can't do anything specific.

5. Caregivers often will not ask for help. Although that statement applies specifically to my family, I suspect it is true of most families. The vast majority of the time I will not tell outsiders what is really going on with my Mom, for any number of reasons. Thus, whenever people tell me to let them know if I need anything, I file that away with point #4 in mind. It isn't personal nor is it pride, but it is usually a case of not wanting to include too many people in our inner circle. Too many cooks spoil the broth. However, whenever we do ask for assistance, it is because we truly need something.

6. Caregivers have been thrust into an unexpected scenario, which ultimately becomes a perpetual series of unexpected scenarios. Thus, mistakes are bound to happen, and I have felt guilty about every single one. Yet, I rarely have time to lick my wounds, so yes, I am ultra-sensitive to criticism (#3) especially when I am the person who has to make the hard choices. If you would do the job better, then by all means...

7. Compromise. No caregiving situation is ideal. And when there are several people involved in the process, there are that many opinions and ways of doing things. Each person means well, and choosing not to take every suggestion is not personal--often it is a matter of feasibility. You do not lose if you don't get everything you want, but you get nothing if you walk away.

8. Children should not be shielded from the scenario. I decided that if my daughter was going to  know her only living grandparents, she will know them as they are at every stage of her life. She also needs to be prepared for the future. I was exposed to the illness of my grandparents and had to actively participate in their care, which I believe prepared me for dealing with this very situation. God forbid if my daughter has to care for me or her father, but at the very least she will have had a blueprint.

9. R-E-S-P-E-C-T. Not just a song, but a reality, especially when dealing with your adult siblings, your even older parents and their siblings, and the outside paid caregivers. All of your family dynamics will be impacted by the illness, and all of your family issues will resurface as well. Respect is making the choice to put the needs of others above your need to be right.

10. Caregivers need support. We need friends. We need family. We need breaks. We need someone to recognize when the situation has gotten too overwhelming and we're in too deep to notice. We need someone to make that benign statement about showing up whenever needed and actually doing so without being asked. We need someone else to remind us that we have to live as well because the last thing anyone needs is an additional chronic illness to manage.