Wednesday, 1 June 2016

Care Partner Wednesday--Stress, part 1

The care partner's journey has many aspects. Fear, laughter, love, insecurity, exhaustion are just some of the aspects. But there is no denying the stress, and today I am starting a series on dealing with some of the aspects. I don't have all the answers, but you may find another tool you can use.

Just like there are all kinds of care partners, there are many forms of 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 unrelenting emotional 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:

"Things turn out best for those who make the best of the way things turn out." Jack Buck

1. Get help.

There's no denying that being a care partner makes routine tasks more challenging. Perhaps you can't get your house clean. Getting to doctor's appointments leaves you both exhausted and wondering if this was worth it. You fantasize about a whole day to yourself. Asking for help is probably the hardest thing 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. It's worth asking the question.

I will confess that I was terrible at this. I didn't ask enough. I was terrified of the embarrassing scene where I ask and they hesitate, frantically searching for a reason to put me off.  That could happen, but it's more often the case that 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 care partner who needed a break.
Don't give in to guilt.

3. Look for a support group

There is a reason this point follows #2. You probably will feel guilt, and if you live entirely in your own mind, you won't be able to deal with it. You need to talk to someone.

One of the functions of being a comparatively young widow was that when I was going through my most intense caring 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. Because time is limited, you might find your best resource is online. There are hundreds of online groups on Facebook and Twitter, and it's a great way to connect with others making the same journey. I have made some wonderful friends who I have never met personally.

It's a lonely road. Don't walk it alone.

More next week...

What is your most difficult stress as a care partner? What works best for you in dealing with it?

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