Wednesday, 22 May 2013

Caregiver Wednesdays- The change no one is expecting

We've talked about change in the caregiver situation this month.

The fast change (such as a stroke, or a fall with a broken hip) that blindsides you and changes everything overnight.

The slow change (such as the progression of Alzheimer disease) that is insidious and catches you unawares as it sneaks up on you and changes the person you love.

Fast or slow, change takes some getting used to. The problem is, there is often no time to get used to it before decisions need to be made. Then, there is more change.

But what if the change is in you?

The change no one is expecting is when the caregiver gets sick, and is no longer able to fulfil their role, at least for a time.

17-35% of caregivers rate their health as fair to poor. 11% of family caregivers report that their physical health has deteriorated. Caring for persons with dementia is reported to impact a person's immune system for up to three years after their caregiver experience ends. 1

These are statistics, but there is no doubt that caregiving of someone close to you can affect your physical and emotional health. How can you minimise this?

Many of the strategies we have talked about are effective. Get support, either from family, a support group or a friend. Ensure you have someone to talk to, and set up systems to take regular (daily if possible) breaks. Make healthy lifestyle choices--get exercise, eat as healthy as possible.

Visit your doctor regularly. An annual physical is a must, and communicate with him/her about your caregiver situation. There may be supports or government programs you aren't accessing.

If you as caregiver gets sick, what happens to the one you are caring for? Do you have a backup plan?

One of the most important tasks of the caregiver is to care for themselves.

Any guesses regarding how often that doesn't happen?

Be good to yourself. Someone you love is depending on you.


Tuesday, 21 May 2013

The small miracle of camping

I just returned from my first camping trip in 40 years.
And I loved it.

Although this was a camping experience like I'd never had in my life, it was what I always thought camping should be. Pitching your tent in a square of land in a provincial park beside other squares of land with other people, never felt like camping to me. I live in a townhouse on a square of land beside other townhouses on similar squares of land. I want camping to be different.

We had to rent a 4x4 for the weekend to get into the place we were going. The paved road became a dirt road, and then turned into something that wasn't a road, but we drove over it anyway. Boulders protruded from the centre and had to be driven around. A beaver dam pretty much crossed the road at one point. The brush on either side reached out to grab your vehicle. Eventually, we emerged into a clearing where the rest of the family was set up already. At the end of the road, a lake beckoned, and we set up out tent close to the shore. A huge communal griddle cooked all the food, and a spit run by a generator held a huge turkey.  Tents, trailers, campers and various places to sleep snuggled on either side of the trail, and a huge fir pit was the centre of attraction. It was camper heaven.

We all learned things this weekend.

Bailey learned that you can harass and harass other dogs (at least two of whom were far bigger than him) but eventually they will have had enough. On Monday morning, we let him out to pee, and fell back asleep. We woke to the sound of howling, and he returned shaking and subdued. Later we noticed bite marks on his ear and mouth, and he was drooling and unable to eat for half a day. I'm sorry he had to get hurt, but he is a different dog now. Quieter. He listens. I hope it lasts.

Hunter learned that his wife is a good camper.

I learned (and relearned) lots of things.

1) I learned that putting up a tent is a lot easier than it used to be. I'm pretty sure I could do that on my own, now.

2) I relearned the fine art of peeing in the bush. (It is an art, believe me)

3) I learned a water bottle with the lid on explodes when put in the fire. Cool.

4) I learned turkey cooked for hours over the spit is the most amazing food I have ever eaten.  Ditto for deer meat cooked on the communal griddle.

5) I've always loved campfires, but I learned that bigger is better and huge is best. I LOVE watching the flames climb higher and and sparks reach to the sky.

6) I learned that what looked like massive amounts of food--dozens of eggs, pounds of bacon, ham, sausage and mounds of pancakes, would all disappear in minutes.

7) I learned that sleeping on the ground without an air mattress is a whole lot more difficult than with one. (Hunter forgot the pump for the air mattress, but someone lent us one the second night. Ahhhhhh.)

8) I learned that before we do this the next time, I am buying a bug hat. You know, one of those ugly things with the netting coming down from the hat?

9) I learned that the only times the black flies weren't terrible were a) when it was raining, but then it was, you know...raining. or b) at night, but then it was dark and cold. The rest of the time, they were relentless.

10) I learned it is very cosy to snuggle in a tent together.

Low moment in the trip:
When one of Hunter's sons, on the second day, asked me my name. We had met before. We've been married a year. Geeze!

High moment in the trip:
When the same son and another son both made points of telling me how much they liked the pies I made. "You know, the way to our hearts IS through our stomachs." Grin. Yeah, I know.

Simple pleasure on the trip:
I sat for two hours and read a book. Can't remember the last time that happened.

Moment of joy on the trip:
The moment I realised that not only could I do this, but I was having a blast. The moment Hunter realised it, and was proud of me. The moment he told me.


Wednesday, 15 May 2013

Caregiver Wednesday- Strategies for Coping with Change

Slow change.

You've had a diagnosis of Alzheimer's for your mother. There were changes that led you to the decision to take her to the doctor, so you had suspected, but it was shocking to hear. You needed to make changes. You entered the new role of caregiver, and began to do things like taking her shopping (she could no longer drive) looking after her medications and worrying about how well she was eating. But under a good doctor's care, and with correct medications, she was now stable. You found new ways to relate to her in your new role, and learned to enjoy each day with her. If you had to hear the same story many times, it was a small price to pay for having her with you and generally healthy.

Then there was a change overnight.

You mother had a stroke, and is no longer able to live alone. Suddenly, major changes are occurring. You must make decisions. You barely know the questions to ask.

Whether change is gradual or instant, it is often difficult to deal with.

Here are a few suggestions. This is by no means a comprehensive list, but sometimes just one or two thoughts can be a lifeline in a stressful time.

1) Journal. If you are going through change in your caregiving journey, there will be stress, grieving, fear and a lot of other negative emotions. It helps to write them out. Try to identify what you are feeling and why. Look for ways to turn some of the negatives around. Grieve your losses, but find ways to enjoy your loved one as they are now (or in some cases, say good-bye in a way that will bring closure.)

2) Get support. Find a support group if you haven't already. Phone a friend and cry (literally, if you need to) on their shoulder. You can't walk this road alone. You need someone who will listen and hold you up. Some days, they may need to prop you up.

3) Research. The old cliche that knowledge is power is still true. The more you know about what is going on, the better you can intelligently talk to doctors and other medical professionals. You are less likely to get surprises from a medical standpoint when you know what to expect. Find out what medications are recommended, what side effects they have, what other treatments help, what kind of equipment might be helpful--there is a lot to know. Make notes. If nothing else, you will be doing something concrete, which combats that vulnerable feeling of helplessness.

4) Break the tasks down. After I became a widow, I was overwhelmed by the amount of paperwork involved in settling an estate. Although I wasn't a caregiver at that point (except at work) I experienced that feeling many caregivers have in a changing situation. I was overwhelmed with the many tasks that needed to be done, and completed while I was in a vulnerable emotional state. I decided that I would only do two hard things a day. Two phone calls, two pieces of paperwork or two "cleaning out" tasks. When they were done, I wouldn't even decide what I was going to do tomorrow. I didn't want to think about it. Those boundaries kept me sane through those difficult months.

Are you dealing with change in your caregiving situation? What helps?

Sunday, 12 May 2013

The small miracle of "the one"

I am famous for carrying stuff.

LOTS of stuff.

My daily commute involves the train, subway and bus (one way).  My job involves shopping for stuff and bringing said stuff to work in bags and satchels and once, a suitcase. Wool and decorations and books and food in a crock pot. My most notorious journey involved a suitcase containing the entire ingredients for Irish stew for 50 people.

They don't call me "the bag lady" for nothing.

But today was different.

Today I took it up a notch, and took a large, somewhat unstable suitcase, a laptop and a purse on my commute. It was interesting.

Like the person who expects to get on the crowded subway with their bike, I felt I was imposing on everyone. I took extra space. I took extra time. At one point, I ran over a man's toes with my over sized bag. "Sorry, sorry," I muttered as I lurched through the system. My purse fell off my shoulder, and at one point when the bus sopped suddenly, I clung to the pole like a life raft as my suitcase threatened to pull me down the aisle.

I wasn't having fun.

At the bus station, I took an elevator to one level, but then found the only way to the next level was a narrow set of stairs. I waited until everyone left the area, and slowly, step-by-step, made my way down. At each descent, my suitcase threatened to tip, throwing us both off balance. To my dismay, I realised a young fellow about the age of my son had begun his ascent up this same set of stairs. I was in his way.

Then it happened. In the most polite of manners, he said, "Ma'am, could I carry that down for you?" He took the suitcase from me and went down the stairs, and then returned in the direction he had begun. "You have a good day." he said as he left, and I thought, you just made it good.

One young guy the age of my son helped this mom with her heavy bag, because my son couldn't be there to do it. He was the one. The one who didn't glare at me. The one who took the time. The one who helped.

So today, on this Mother's Day, I say to sons and daughters of all ages everywhere, be the one.

Be the one to go the extra mile to make someone's day. Hold a door, give up your seat, smile, carry a bag. You will give blessing far beyond the simple act.

Be the one.

Wednesday, 8 May 2013

Caregiver Wednesdays- The River De-nile

One of the ways to cope with change is to deny it. Refusing to see what is in front of you, although not an effective strategy long term, can help you get through today. Trouble is, tomorrow comes.

When Bill was sick, there wasn't a time until the last week of his life when it occurred to either of us that he was going to die. As he wasn't conscious at that time, I don't think he ever realised we were facing the end. Three days before his death, after five surgeries in three days, it hit me with the force of a bomb. I was at the hospital late that evening, and all three kids were there. We were only allowed to go in to see him in small groups, and I had already visited, so at the next available time I encouraged them to visit. When I was alone, I turned to our pastor, who had driven from Mississauga into the city after 9:00 p.m. to visit with me. "What do I do if he dies? I have no idea what to do." His answer was simple. "You call me."

At that moment, I faced the reality I had been avoiding for weeks. Looking back, it seems ridiculous that I wouldn't see it. He got weaker every day. His skin developed black welts because the skin wasn't getting good blood circulation. He was having delusions and paranoia for the same reasons. Yet I still floated my boat down the river de-nile.

It's hard. It hurts. But facing reality is also freeing. There is an element of pretending in denial, and that gets exhausting after a while. When you look the situation in the face and accept what you are facing, you are free to make a plan. Even if the plan has to change, you are dealing with reality. Pretending wastes valuable energy.

Ride down the river de-nile for brief periods if you have to, but get out of the boat to walk on the shore as soon as you can.

Wednesday, 1 May 2013

Caregiver Wednesday- Dealing with Change

Remember when you had your first baby? 

When I brought my daughter home, I was terrified. I had all kinds of experience with kids, including babysitting, but this little person was depending on me in ways no other child had. My husband had to work that first night, and I was sure something terrible would happen. What if she cried all night? What if something happened when I was all alone with her?

Of course, we both survived the first night just fine, but then I had to learn to bath her and toilet train her and discipline her. It seemed I just got one thing figured out and she would change. Each step in her growth brought new challenges. When she had a sister and a brother, it was harder, as each of them was growing and transforming into the wonderful adults they are today. I had so much to learn.

For caregivers, change can be the enemy. It can occur in a moment, can vacillate back and forth, can be gradual and insidious, or occur in sudden, jerky steps. Change is caregiving usually mean there's been a decline.

A week ago, I was researching this topic for a support group I facilitate, and was surprised to find there is little written on the topic. I thought, "I'd better write it."

Change can be shocking. One day, you visit and share a meal and you laugh together. Later that evening, you hear that they have had a stroke, or fallen and broken a hip, or had a TIA (a transient ischemic attack or a small stoke) and are talking nonsense. Change slaps you in the face, and you reel from the attack. Immediately you must act, often without knowing what the correct course of action should be.

Change can be relentless. You've barely adjusted to the last change when something else happens. The person with the broken hip sufferes a heart attack in surgery. You get a diagnosis of dementia, and a few weeks later, a diagnosis of diabetes. Your emotions are always playing catch up.

In the last year of my husband's life, it was like this. Crisis followed crisis, and I struggled with how to respond. This was especially true one day when we went together to see the cardiologist. He'd had many disturbing symptoms, and I took time off work to get some answers. What we heard was frightening. There was no cure except a heart transplant, he would start the process for that immediately, and Bill needed to go on disability right now. Today. He drove into work that weekend, cleaned out his desk, and told his boss. We met with the kids. Life would be different, but it could be good. I remember thinking, "This will be different, but it will be okay." For a few weeks it was. 

Then, he was back in hospital. He hated the hospital, and we used the time to create a "nest" in the basement. It was to be his place to recover from the heart transplant, and we poured ourselves into making it comfortable for him. He came home and loved it, but was only there a few weeks until there was another change. 

Change can be gradual. Sometimes, it creeps in, and you don't notice. You know there are changes, but you are adapting to them as they come, and you don't notice how far down the road you've come. 

My mother had Alzheimer's, and although she was young for the disease, it seemed gradual. There were things she no longer did, but they slipped away like the tide. One day, I opened a storage cupboard and saw a winter coat she had made five years ago. Fully lined, bound buttons--it was a work of art. She'd made it for my niece, and now my daughter was the right size to wear it. But in those five years, Alzheimer's has stolen my mother's ability to sew. Now she had no idea what to do with a needle, much less a sewing machine. I wept.

Sometimes change vacillates and confuses. The nature of dementia isn't a straight line. There is a lot of back and forth in terms of ability. One caregiver said, "Something new happens, and I wonder, "Is this something new, or will this be gone tomorrow?" The uncertainty can make life difficult.

This month, we will look at the challenges of change, and some strategies to deal with them.

Stay tuned!