Millie’s family had just been through some horrendous months with her care. She was in heart failure, and it led to so many problems. Her legs swelled and leaked, her mood was all over the map, and she was seeing things that weren’t there. Sometimes she was short of breath and needed oxygen. She wasn’t eating much. They thought they were going to lose her several times. The adult children, who had jobs and families and responsibilities, took turns at her bedside, trying to help. When she finally started to improve, they were delighted to be able to move her into a home where the care was top-notch and there were activities to fill her day. After an initial adjustment, she began to make friends, join in activities, and stop calling them in tears. They breathed a long sigh of relief.
The stable period was short-lived. A few months in, one morning at breakfast, Millie complained of dizziness. The nurse took her blood pressure and checked her blood sugar and oxygen levels. Most startling was that she was no longer able to feed herself. She stared at her bowl of porridge, mystified as to what to do with it. And when she spoke, it was her native Latvian. She seemed to understand English but only replied in her native language.
Change, especially when stability is a brief respite and not the “new normal” we hoped for, is difficult. As care partners, you are depleted in every way–physically, emotionally and mentally. You gave everything to the last crisis, and here you are again. All the worries about your loved one’s future have returned. On top of this is the pain of watching helplessly as someone you love hurts.
How do you cope?
Here are a few suggestions:
Communicate
People can’t help if they don’t know the need. Use social media, word of mouth and any other method you can think of to get the word out there. Mom is sick again and you need help. Have friends tell friends.
Rally the troops
If ever there was a time to call in every last support system you have, this is it. “But I asked them for help last time.” That’s alright. People understand. This is difficult and you need help. Take every offer that is given, and then some. And if you ask and get a negative or luke-warm response, politely excuse yourself and re-evaluate that friendship.
Be specific
What do you need? Moral support? Meals? Someone to visit mom in the hospital? Drives? Someone to clean your house? When people say, “Just ask,” take them up on it. If you are embarrassed to ask, post it on social media.
Get information
One of the scariest parts of a situation like this is the unknown. You can see what is happening, but what does it mean? What is being done, and what, if anything, does this change for care in the future? What can you expect? Make an appointment to talk with your doctor, and have your pen and paper ready. Write notes and ask questions until you have a clear picture.
Spend time
I’m sure you know this, but nothing is guaranteed. Even though balancing all the demands in your life may be overwhelming, and life is painful right now, you have your loved one with you. Spend a few extra minutes talking, holding a hand or reminiscing together. Treasure this time with your loved one as best you can, and make sure you say everything you want to. Hold them, express your love and be thankful for another day in which to do it.
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