Brenda worked full time, cared for her family and spent most weekends with her mom, who lived in a local care home. She would bring her to her home, where she could play with her three-year-old great-granddaughter and visit with Brenda. Sometimes they would do a few errands, Brenda would do mom's laundry and make her a home-cooked meal before taking her home. The repeated questions would continue throughout the day, but Brenda had determined a long time ago that a way to honour her mother was to give her the gift of patience.
But this day was different. Her mom went to the washroom and didn't quite make it. Brenda cleaned her up, but the combination of the urine smell and the infected weeping sores on mom's legs made her gag. Mom's repeated questions and frequent bathroom trips wore Brenda down until she heard herself being short with her mom, something she'd promised herself she wouldn't do.
On the way home, she wept. When she arrived home, she called her sister and sobbed out her pain. So disappointed in herself for her impatience with her mother, she confessed she was afraid she couldn't care for her any more.
Brenda felt classic care partner stress.
"Am I doing this right?"
"I feel angry, then guilty, then angry again."
"I have to do this. What if I can't? What if I fail?"
"Does anyone understand what this is like? Does anyone care?"
Here are some practical survival techniques.
Easy to say, sometimes hard to do. Look at your other responsibilities, and decide what you can and can't do. It's easy to hear the voices, "This is your mother, who did so much for you. Are you saying you can't care for her when she needs it?" The reality remains you have a husband, family, job and other responsibilities. Take an honest look at what you can do. Refuse to let guilt make your decisions for you.
My observation is that in most families one person becomes the main caregiver. It's difficult, especially if you're already stressed, to approach siblings about sharing in the care. Difficult but essential. Have a frank conversation which looks at ways they can contribute. If siblings live out of town maybe they can contribute financially. Share honestly about the need and give them a chance to respond.
You know those people who say, "If you ever need anything..." Make a list of the people who have offered to help at some point, the areas where you could use the help, and then try to match them. If only a few of these pan out, you're still further ahead.
Who has time, right? Your house may not look like a magazine cover, but that's not what I mean. Keep a list of your elder's medications handy. Write down questions for the doctor as you think about them. Make a list of all the medical professionals (doctor, dentist, pharmacist etc.) for your elder.
A sense of humour is invaluable. Today I sat with an agitated resident who has aphasia. Most of what she said made no sense, but at one point she said, "I'm sitting here, dumb."
I replied, "But Martha, we're sitting and chatting together."
She made another unintelligible statement, but it contained the word "dumb" as she looked pointedly at me.
I blinked. "Are you saying I'm dumb?"
Her face brightened. "Yes!"
We both burst into gales of laughter.
Education, when related to your loved one and their disease, brings comfort and power. Learn as much as you can. If you can't attend seminars or workshops, look for online information. YouTube carries a wealth of information. The more you know, the better prepared you will feel.
You feel alone, but you aren't. Many are facing the same challenges, and there's unbelievable freedom in sharing your stories. Check your local societies (Alzheimer Society, Parkinsons Society etc.) for groups, or check online. Talking to others who understand will be an invaluable resource. And you know what? You can give that gift to others, too.
Next week: Christmas and Care Partner Stress
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