Wednesday, 25 November 2015

Care Partner Wednesday--Facing the Fear

"How's you mother doing?"
"Oh, she's just amazing. She's 91, you know, and she still lives in her own house and does all her own cooking and cleaning. We bought her one of those monitoring things, where she can push a button if she gets in trouble, but that was more for our peace of mind. She never uses it. She just astounds us all."

That was last week. Then things changed.

Mom felt light headed, so she pushed the button. It's a good thing, too, because that was the start of a major stroke. Now her left side is paralysed, she's in the hospital and they aren't sure how much function she will recover. She'll never be able to live independently again. Physio, assistive devices, long term care--there's a whole world of new things for you to learn, and you need to know them yesterday.

There are aspects of being a care partner that can lead to a lot of fear. Here are a few of the most prominent ones.

1) Fear of a sudden change. Even if life wasn't as perfect as the situation described above, you may have reached some sort of "normal," only to have everything change in an instant. A severe medical condition, a fall with a broken bone, or a sudden decline can change everything. We are seldom prepared for how life changes when this happens, and there are no guarantees of recovery.

2) Fear of decline. Even when the changes are small and incremental, a few of them can add up to a major decline, and it can be frightening. Perhaps there is a loss of appetite, leading to weight loss, lack of energy and loss of muscle and fat. As a care partner, you are looking for ways to solve this, but in a short time you realise there has been a major change. It's frightening.

3) Fear of the unknown. The whole medical field speaks a strange foreign language, and you may have no idea how it relates to your loved one.

4) Fear of devastating change. Do you think about the day your father won't know you, or your mother keeps calling your son by your name? Lack of recognition from someone you love is a fear that lurks in the minds of many who deal with dementia.

5) Fear of death. When your mother has always been there, you can't imagine life without her. You know it is inevitable, but can't fathom it.

All these fears and more plague care partners as they walk (sometimes stumbling) this journey. Next week, we'll look at some practical steps toward dealing with the fear.

Stay tuned.

Wednesday, 11 November 2015

Care Partner Wednesday--When Family Lives Far Away

We call it the "daughter from Florida syndrome" where I work. This is not to disparage daughters, and is certainly not about Florida (one of my favourite places in the world!) It's a known fact that most care partners are women, and Florida is far from where I live. Hence the name.

Just to make sure I make me point and don't offend anyone, imagine a family member of either sex arriving from out of town for a week to visit their loved one who is in care. Almost before their suitcases hit the ground, they begin to find fault. Soon there is a list, and staff members scurrying to fix, explain and follow up. Review the medications, change the mattress, get a different hairdo. "The laundry destroyed her socks, and why isn't my mother up, it's after ten o'clock?"

At the end of the week, the family-member-from-out-of-town leaves, and the staff collectively sighs with relief. Whew. Until next time.

Let me qualify what I'm saying with this:

Not all out-of-town family members are like this. I'm sure you aren't. But over the years, we've seen more than a few.

I have been "the daughter from Florida." But that's a story for another day.

Having a family member in care when you aren't there is difficult, heart-wrenching and sometimes confusing. You wonder what is really happening, and you worry. Perhaps you get a disturbing phone call from your loved one, and you struggle with how much to believe.

Here are some thoughts as you visit your loved one:

1) If you have a sibling who lives in town and handles most issues--tread carefully. If you say this or that is wrong, it is easy for them to feel you are criticising the job they of doing of caring for your loved one. Make sure you discuss issues with them, and do it in a non-threatening way.

2) Establish relationships. Get to know your loved one's nurses and care partners. Thank them for the job they are doing. A small "thank you" in the form of a fruit basket or other treats means so much to those who work hard every day.

3) Find someone (possibly a nurse, but even better might be a team leader, activation staff, or any staff member who stays in touch with families. Ask if you could email them every two weeks to get a feel for what your mother is doing. (Make sure it's not more often, although it might be tempting.) You could also send pictures of your family events, and the right person might send some back to you.)

4) Ask questions, and then listen. Sometimes an issue is only an issue because you don't have the whole story. Perhaps the socks needed to be replaced, the hairdo is the one Mom asked for and she's in bed because she wanted to sleep in this morning. Not everything is a negative.

5) On the other hand, if you believe you have a serious issue, go to the top with it. Make sure to involve your siblings in town (if they exist) but ask to speak to the nurse, the doctor or the Director of Care. Keep talking and listening and asking questions until you are satisfied.

6) Use technology. Is there a family member or friend who could bring in a laptop or tablet once a week? All it takes is the wifi password and an arranged time, and you are Skyping with your loved one. I see this more and more, and it's lovely to see the delight on the elder's face as their daughter-from-out-of-town appears on the screen. Set this up while you are visiting and enjoy it when you go home.

All of these tips have one goal: to bring you closer to your loved one. As problems are solved, relationships fostered and technology used, you can connect to the one you love.

Which is what it's all about.

Wednesday, 4 November 2015

The small miracle of little things.

I have a tiny screw in my glasses that keeps working itself loose. I'm not sure why, because I've never had to tighten the one on the other side. But every month or so, I have to grab a kitchen knife with a sharp edge and secure the screw.

Except when I forget.

If the screw comes loose enough to fall out, it can easily be lost. Without that screw, the lens oops out and I can't see. Without that lens, my life screeches to a halt. I can't drive, I can't work, and I can't get to the optician by myself to get a new screw. This minuscule object, less than an inch in size, has the power to bring my entire life to a standstill.

As I tightened the screw, I thought about other "little things" that drive me nuts and can ruin my whole day if I let them. Here is my (not comprehensive, by any means) list:
1. People who are late.
2. Being late myself.
3. Bad grammar.
4. Arrogance in any form.
5 Being taken for for granted.
6. Not being taken seriously.
7. My own awkwardness. (I am the original klutz, and it's embarrassing.)
8. Missing the train (see #2)
9. Loud, flirty people.
10. Uncontrollable tears. (When I realise I am going to cry and I can't stop it from happening at a completely inappropriate time.)

These "little things" (and many others) can set my teeth on edge and put me in a bad mood. Like the tiny screw, they have the power to ruin my day if I let them.

The thing I noticed about little things, is that they can cloud my vision. When that screw falls out and rolls away, and my lens won't stay in my glasses, I can barely see. Every other action, thought and response my life is affected by it.  Like living in a fog, I am paralysed, squinting to see what is in front of me.

Attitude does that. The "little things" are all about attitude.

If I am focused on the irritating events or people in my day, I miss everything else. I don't see the sunrise because I'm fussing about missing the train. I miss a friendly smile because I am listening to the grammar. I don't care about any other small miracle God has put in my pathway. I miss it all.

Even worse, I become someone I don't want to be. If I allow "little things' to cloud my vision, I become sarcastic, grumpy and negative. Lovely.

So today, Lord, (and all the days that follow) I give You permission to poke me when I slide into letting "little things" control my day, my attitudes and who I am.

Remind me that You call me to humility, patience and love. Oh yes, and thankfulness.

"In everything give thanks, for this is the will of God in Christ Jesus concerning you." I Thess. 5:18

These are the little things that matter.