Just like there are all kinds of caregivers, there are many forms of caregiver stress.
You may be experiencing only some of the symptoms. Perhaps your stress is more emotional than physical. You worry about the future, you wonder how this is affecting your family. You want to scream when the same question is asked yet again. You feel guilty about your feelings, but wish you could share them. You are not physically caring for your loved one--he is still able to do that for himself. But you are living with caregiver stress.
Much of what I am going to share isn't rocket science. But when you are being constantly bombarded by a stressful situation, sometimes another perspective helps.
There is also an aspect of giving yourself permission. Permission to take a break. Permission to laugh. Permission to not feel guilty. You may be too close to the situation to grant that permission, so I am going to give it to you.
These suggestions are in no particular order:
1. Get help.
There's no denying that being a caregiver makes the tasks that were routine, more challenging. Perhaps you can't get your house clean. Perhaps getting to appointments is challenging. Perhaps you need a day off. Asking for help is probably the hardest thing that you will do. But the fact is, there are often family and friends wondering how they can help you, who would be delighted to know something specific they can do. And if you need to pay for help, then do it. Having your house cleaned professionally even once a month to preserve your sanity is a good use of funds. You may also qualify for some government assistance in this area, depending on the severity of your loved one's needs.
I will confess--I was terrible at this. I didn't ask enough. I know it's hard. I had a terrible fear of rejection (what if they say, "no?") But the bottom line is, if your family and friends see your need, most of the time they are willing to help in some way.
2. Don't give in to guilt.
Guilt is like the worm in the apple. At first, no one can tell it's there, until you see the whole apple has become rotten. Guilt bores into you in insidious ways, nibbles away at your thoughts and takes away your joy. Guilt has all kinds of languages.
- The language of the loved one- "You never come and see me." (I was here two days ago.)
- The language of family- "Why can't you come to this family event? We never see you any more."
- The language of acquaintances- "My, you don't look well."
- The language of church friends- "We haven't seen you for a while. Are you all right spiritually?"
- The language of doctors- "You need to ensure he gets this medication on time."
- The language of yourself- "I'm not doing enough. I'm not doing it right. I'm not ___________"
Most of the guilt comes from the last voice--your own. We are incredibly hard on ourselves.
I remember one night when Bill was in our local hospital, and I was on the bus on my way home from work to see him. I received a call from the hospital, telling me that he was in the process of being transferred to a hospital in the city. So he was heading in one direction, and I in the other. It was impossible for me to visit him that night--by the time I got there, it would be time to leave. I had a rush of joy, realising I could go home and put my feet up. This was followed immediately by a rush of guilt.
My husband was seriously ill, and I was thrilled to be able to have a hot bath and read a book. What kind of a terrible person was I?
I was a caregiver who needed a break.
Don't give in to guilt.
3. Look for a support group
One of the functions of being a comparatively young widow was that when I was going through my most intense caregiver times, none of my peers really understood. They loved me and cared about me, but they weren't in the same position. It would have been so valuable to me to have someone to talk to who actually understood.
The Alzheimer's Society has all kinds of teaching group which give opportunity to talk with others who are going through the same experience. Many churches are recognising this need, and have groups for caregivers, as well. Check community centres and other resources within your area. Obviously, something close and convenient is important. Even check online, as internet caregiver support groups are available.
It's a lonely road. Don't walk it alone.
More next week...