Are You a Caregiver? Be Sure to Give Yourself Some Care Too
Being a caregiver to a loved one is perhaps one of the most important things we will ever do. Taking care of them yourself can keep them from having to go to a home or be cared for by people they don't know, therefore making their illness less stressful for them.
We want our loved ones to be as comfortable and happy as they can be when they are sick and particularly when it is a fatal condition. You want whatever time they have left to be the very best that it can be.
My father was diagnosed with lung cancer and passed away a month later. He was able to stay at home and I felt blessed that I was able to care for him. Shortly after his passing, my mother broke her hip, developed dementia and came down with C.diff (a shortened version of the more difficult and long name), which causes unrelenting diarrhea and is very difficult to treat. Again, I was blessed to be able to care for her, at home, until she passed away about a year and a half later.
I would not change anything about that time, but if you're in this situation, I wanted to pass on some things you need to remember about being a caregiver. It can be physically, emotionally, and mentally exhausting. You need to take care of yourself too, but this is very hard to do. So I wanted to share what I learned so that you can stay sane and healthy during this very difficult time.
Rest and Eat Well
These are almost impossible to do...really. With all that you have to do, who has time to eat right or get much sleep. Throw in the emotional heartbreak you're going through and eating and sleeping can be the last things on your mind.
As far as the eating, this is the time for convenience. If you are not lucky enough to have family and friends that will keep you supplied with good meals, you need to get ready made food from the grocery store. Rotisserie chickens, potato or macaroni salads, TV dinners, sandwich fixings, canned tuna...anything already made or quick to fix. While some of these may not be the healthiest choices, at least you'll be able to grab a quick bite. Eating anything at this point is better than not eating, and better than a bag of potato chips.
Sleep is hard to come by. I was lucky if I got 5-6 hours a night. I can only say to grab any time you can to get a nap.
Be Gentle With Yourself
There are so many times you are going to wonder if you're doing a good job. Are you doing everything you should be? Are you doing everything correctly? Should you be doing something differently? Realize that you are doing the very best you can and stop beating yourself up. You will have some contact with a doctor, usually, and they can let you know if there is something else you need to do. Be gentle with yourself...you are going through a very rough time and you need some TLC too.
This is also the time to get as much help as you can. I had no relatives left to help me (except my brother, but he was working full time, so he wasn't able to help as much as I needed) and very few friends that I could count on or that I felt comfortable leaving my mom in their care. The one huge blessing was that I had Hospice. They are such an incredible organization that I can't even find the words to describe them. If you can get Hospice, DO!
No Guilt Allowed!
I have left this for last, but it really should have been first. You will have so much guilt going on that it will grind you down to nothing if you let it. Some of my examples may not apply to everyone (we all experience things differently) but I'll bet most of you will identify with at least some of them, if not all.
When I did take the time to eat or grab a nap, I felt guilty. I had all my attention focused on my mother and felt I had to be in her bedroom with her at all times. When I wasn't, I was washing dishes or taking the trash can to the curb..things that HAD to be done. So to go to the kitchen and fix myself something to eat seemed selfish almost. As far as a nap...what if something happened to her while I was asleep?
Then there were times when I would find myself laughing at something I saw on TV or flipping through a magazine while she was asleep. When I had a moment of something pleasurable, I felt guilty. How could I find anything funny or enjoy reading that article when my mother was dying?
I made my share of "innocent" mistakes. I say innocent because they were unintentional and not expected. When she was in the hospital, I was going to lift her to put her in her wheelchair and didn't put her shoes on. With just her socks on, when I lifted her (under her arms) her feet slid and I we both went toward the floor. Luckily I could hang onto her so she didn't hit hard, but I was horrified. I did this at home (with carpeting, which made all the difference) all the time and so I just didn't think about the socks on a bare floor issue in the hospital.
Another thing that really laid the guilt on me was the nurses in the hospital. I'm an animal lover (and so was my mom) and we had lots of kitties at home, so I had to leave the hospital each night to go home and care for them. When I would leave, the nurses would give me a disgusted look and say. "Oh, are you leaving?" Bear in mind that this was usually at about nine or ten at night and I had been there all day. I would have rather stayed with my mom at the hospital full time, but couldn't. Talk about guilt....nurses should know better than that!
With all of this said, I want to stress that you must not let these things make you feel guilty. You are doing one of the most selfless things you can do for someone you love deeply. You have nothing to feel guilty about if you make a mistake or try to give yourself a break. If you start to go down the guilt road, just try to hear me yelling "NO GUILT ALLOWED!!!"
I hope this helps anyone who is a caregiver or will become one down the road. We've all heard "if you get sick, you won't be able to care for anyone, so take care of yourself." This is absolutely true, but very hard to put into practical use. However, it is something you must do to make it through one of the toughest times you will ever face. Give yourself some care too.