I have been thinking about sacrifice for a great number of years. The meaning I’m referring to is “to give up something usually for a better cause”. As a caregiver, I sacrificed a lot of things in my 19 years: autonomy, independence, companionship, sexuality, and financial security. Being in a very loving marriage, I had to help my husband through his disease. He had no choice, and I wouldn’t even consider the other major choice which was to leave him! Some people do.
That didn’t mean that I didn’t wish at times that I were in a different scenario of life, one much better than the one in which I was presently living. Many nights after a tiring day of giving and doing I used to dream of being in a beach house all alone where I could read in front of a fire, walk along the beach, etc. But it’s funny to think of it now, because I was always working through grief when I was walking on that beach, and there were usually tears in my eyes. Yes, caregivers do sacrifice, no matter what you want to call it. The word at least in my mind conjures up some negative feelings of doing it for the praise, the acclamation, but that is not the true meaning. Many of us shy away from using the word sacrifice for what we caregivers do.
I did it out of love and devotion because no matter how hard my journey was, I made myself think of what it was like for Jim, living in an unfamiliar world of unknowns and unpredictability, and being scared you won’t be able to tell someone you are in pain. That was Jim’s biggest fear.
Making it through our journeys is not easy, and part of the difficulty is that we have no clear end. But think about life before dementia came on the scene. There are no finalities there. We have no crystal ball telling us when things will happen or when things will be over. We just learn to live life with no certainties and accept that as normal. And we don’t even waste time on it. The difference is that we are not constantly making sacrifices in our daily life. That is why I think we want to know when it will be over.
For me, it helped to reward myself with little things as a “pat on the back” for being a good wife. Maybe it was a quiet night of reading a good book while Jim was in bed, or buying a piece of clothing, or eating a piece of cake or ice cream. The eating rewards did come back to haunt me though. By the time Jim died, I had gained weight. From 130’s all the way up to 165lbs…..I weighed what Jim did before he got to the point where he didn’t enjoy eating. Almost 8 years later and I am down to 143lbs. and hopefully I’ll get back to the 130’s. But it has been very difficult for me to lose weight.
Part of that stems from my childhood. We were quite poor, and didn’t have junk food in the house unless my grandmother brought it. I never ate spagettios or the newer convenience foods unless I went to a friend’s house. So of course, when I married and I could buy potato chips, macaroni and cheese, ice cream, and soda pop, I occasionally did. Growing up it was a real treat to have TV dinners on a tray in front of our favorite TV show. I didn’t always go overboard buying junk food, but when Jim got to the point of not finding food enjoyable, I went in the opposite direction. It was slow, but it was a steady process. So try not to do what I did. Choose other things to reward yourself.
- Time with friends if you can find a substitute caregiver for your loved-one. Look up respite opportunities at your local Alzheimer’s Association.
- Start having relatives come and stay for a few hours while you get away early in your caregiving so that your loved-one gets used to having someone with them. Otherwise they won’t let “strangers” in the house late on! (A friend they like is a good option if the friend is willing.)
- If you have a relative (son or daughter) who can come and stay for a weekend while you go stay in a hotel with a spa, or visit other relatives or friends out of town. Once they do it, they know what to expect, and it will be easier to go away the next time.
- Put soothing music on and quietly read.
- Choose some things that you both can do together so you find joy while being together. That helps to make your relationship better! The Alzheimer’s Association also has a number of activities that caregivers and care partners can do together. If you don’t have their quarterly booklet of activities and offerings, all you need to do is call 1-800-272-3900 or go online at alz.org to find the association nearest you.
- Towards the end of the disease even a trip to get groceries or to the department store can be a well needed break.
- A walk in a local park, or forest.
- Go get a manicure or pedicure or have your hair done.
- A walk around the block.
- Get a massage.
- Hire a companion.
- Last and most importantly, JOIN A SUPPORT GROUP! You will meet many folks in your situation that help you to see that you are not alone. It’s never too early to join!
I’m sure there are many more good ones you may come up with, and I’d be happy to hear them if you write!
Yes, I sacrificed. Yes, I felt trapped, lonely, and scared. I was resentful. How can I not be under the circumstances that are only clear to a fellow caregiver. And yes, all of that is OK to feel, normal to feel. As long as you then say, OK, I’ve given myself time to wallow in my emotions, now it’s time to pick myself up and get on with living. Put a smile on your face, and laugh when you can as often as you can. I find if I act as if I’m happy, I will forget about acting and will actually be happy in that moment.
Joy and appreciation for the day is something you choose to experience, not something that is done to you by an outside source. So close your thoughts for the day when you are ready to sleep with the things that brought you joy that day: maybe a beautiful bird at the feeder, being lucky enough to be satiated and have a warm house, to have wonderful children, or whatever has pleased you. Maybe you took your loved one to the doctor, and there was no incident to ruin the visit. It’s what you value.
Now looking back, after Jim died I didn’t take that visit to the beach by myself. I have taken a number of trips with friends, and I got a puppy 4 months after Jim was gone. Perhaps I will take that trip to the beach next summer by myself. To a bed and breakfast type place, take a bunch of books, meander the town, and give thanks for what I have had. Living one day at a time is a good gift to learn! And we all learn that from our caregiver journey.