Wednesday, 29 April 2015

Carepartner Wednesday--The Carepartner Alphabet--O

O is for overwhelmed.

What does overwhelmed look like for the care partner?

It's the daughter dealing with her mother's anxiety disorder who can receive twenty calls a day. Fifteen of them are overnight. Nothing she does or says calms her mother down. She hears the same questions and the same worries over and over again. Sometimes, she decides she needs boundaries, and tells her mother she will be shutting off the phone after a certain hour, but then she lies in bed worrying about her.

Overwhelmed is the wife who must make difficult decisions about her husband's care, and just when they are made, his health changes again and she must make more difficult decisions.

Overwhelmed is the sibling who visits but has no clue how to relate to her sister. She doesn't know this person and can't recognise the sister she knew. When she tries to do something nice for her, something she used to love, she is met with anger, At a loss, she sits in her car and cries after every visit.

What do you do about overwhelmed?

Somethings there's nothing you can do but push through.

If you are in the middle of a crisis, or a series of seemingly unending crisis, it's possible to become overwhelmed quickly. Like facing into a hailstorm, it keeps coming at you, it must be dealt with. And it huts.

Sometimes it's not the crisis but the ongoing demands of every day. Lack of sleep, physically demanding care, days filled with demands and no breaks can create a kind of dull despair, and then one small "extra" like taxes needing to be done or Christmas shopping can create waves of despair. It's too much. It's all too much.

How do you cope with overwhelmed?

Probably not well, but here are some tips.

1) Call a friend.  Call all your friends. Put the word out that you need help. Someone to listen, someone to help, someone to support. Overwhelmed can be overcome, but not alone. Never alone. The only way to begin to see the light is to have the love and support of friends.

2) Get rid of the unnecessary. Examine your life and see if there are commitments or duties that don't need to be on your plate. Can another family member look after them? Is there something that can be dropped completely? Any time that you free up, use it to rest.

3) Try to get away, even for half a day. It's amazing how perspective changes when we are rested.

4) Remember, it won't be like this forever. The crisis will pass and the situation will become stable. You will get used to the new normal. Things will get better. It looks like a long tunnel now, but there is an end.

If you are a friend of a care partner, watch them closely. Listen. Be there. Your friendship and support is an invaluable gift as they walk this journey.

Tuesday, 14 April 2015

Take Time to Smell the Rain

Before I got off the subway, I knew it was raining.  As I stepped off the train onto the platform, the scent of a fresh, spring rain wafted by.

 I took a deep breath. Ahhhhh.

I had glanced out the window several times that day and wondered if the promised storm was coming after all. It was sunny and warm and all we hardy Canadians could talk about was our excitement about the arrival of spring. We stared out the window at the garden, spotting green leaves and snowdrops poking through. It had been the longest, coldest of winters and we were so ready for robins and raindrops.

Truthfully, I was hoping the raindrops would wait until I got home. I have hair issues and rain is not kind to my thin locks. Of course, rain going home is better than rain going to work, where it's an absolute disaster. But rain when I was safe inside was the best of all.

It was not to be. Running from subway to train did damage to my hair. The carefully fluffed and hairsprayed style of the morning was stringy and flattened. Racing from train to my car destroyed it completely, with streams trickling down my back. Oh well.

Standing on the train, I gazed out the window and smelled the rain. It would have been nice to be dry, and even better to get a seat but if I was sitting I would have missed watching the tall grasses do their funny, jerky dance in the wind. I wouldn't have noticed the slight greening of the lawns or the swelling buds on the still-naked trees. I wouldn't have smelled the rain.

I learned a lesson that day.

There will be rain. Life has its storms and they require a whole different set of skills, but the little showers each day can bring me down if I let them. The missed bus, the forgotten lunch, the person who cuts me off in the parking lot. The missed call, the forgotten bithday, the person who takes forever in the grocery line. Life's little annoyances can irritate me and cause me to forget what is important.

Whenever there is rain, I need to look for the blessing. Is there a reason I wasn't on that bus? Should I have lunch with a co-worker because I forgot the salad I usually eat alone? Is there a blessing I am missing because I am focusing on my irritation?

"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." 1 Peter 5:6-7

Smell the rain.

Wednesday, 8 April 2015

Carepartner Wednesday--The Carepartner's Alphabet--N

N is for normal.

What is normal? In 1998, Patsy Clairmont first told us Normal is Just a Setting on Your Dryer. What a relief it was to learn that it's okay to not fit into society's little box. It was freeing at the time, yet we still seek "normal" in our lives.

Normal changes. When my kids were babies, normal was to be up half the night and and sleep-deprived during the day. When they were teenagers, normal was worrying when they weren't home.
In this season of my life, normal involves rising at 5:00 a.m., a long commute, doing a job I absolutely love, another long commute, a night spent writing or editing and one show on Netflix. Some nights my husband is home, and he has dinner ready when I get there, some he is working. Both are normal. If he's working, he calls and we talk. I normally go to bed between 10:00 and 11:00 and do it all again the next day.

That's my normal. I'm sure yours is different.

If you are elderly, especially if you are in frail health, your normal can change in a flash and the change tilts your world. Maybe it will return to to "normal" or maybe a new normal will emerge. Sometimes you barely have a chance to figure out the new normal before it's changed again.

One of my residents was finishing her lunch. She got up, and as she reached for her walker, she turned and lost her balance. The fall that resulted tilted her world. A broken hip, surgery, rehab and months of recovery. Thankfully, her world has adjusted to it's pre-fall state, but the tilt was dramatic and harrowing for her.

As a care partner, finding normal is a never-ending quest. A quest that, in the end, may not even be possible. This is especially true when dementia is involved.

So here's my 5 suggestions when looking for normal.

1) Be flexible. Realise that life changes, people change and things will never be exactly as they have been. And that's okay. Look for the fun and the joy in what today brings. As a caregiver, you can quietly grieve some of the losses, but determine to look for and celebrate the joys that today brings. If you are honest, there were times when the old "normal" wasn't that great.

2) Find some normal. In the midst of change, look for some memories or familiar objects that bring a sense of comfort. A picture, a favourite chair, a painting, a photo album full of precious memories. An activity you used to like to do together that is still possible. A little normal can make a whole lot of change easier to deal with.

3) Expect change. I have seen care partners and family members stress over a change and try desperately to make things the way they were, when their loved one has changed and doesn't care about that any more. "She always loved to do crafts. Make sure to involve her when you are doing crafts." The person did love crafts in a different season of their lives. Now they would rather sit and look out the window or feel the fresh breezes in the garden. Everyone has interests that change as they get older.

4) When you "get it," help your family members. There's always one in a family, and often more, who lag behind in wishing Mom would be like she used to be, or worse, feeling that Mom is gone because she isn't "normal." Help them to see the beauty in the person who is there now.

5) Express to your loved one how you are enjoying who they are today. Even with cognitive impairment, elders know they aren't who they used to be. Your job is to recognise that and celebrate who they are today. Look for their wisdom and learn from them. Listen to their stories, even if you have heard them before.

There is a time in life when you finally recognise that every day is a gift and normal is highly over-rated.

Wednesday, 1 April 2015

Carepartner Wednesdays--The Care Partner's Alphabet--M

M is for memory. And memories.

Alzheimer's and dementia is all about memory. Lack of memory, how to stimulate memory, retrieve lost memories and work with the memory that is left. In the context of the disease, memory (and the lack of it) is the enemy. There are huge amounts of fear associated with memory loss, especially on the part of the care partner. It can feel like a wagon rolling down a hill that we can't catch, no matter how hard we run. We have no control. It keeps getting worse.

Memory is amazing, and helps us perform all kinds of tasks in a day. Imagine forgetting how to brush your teeth, feed yourself or the names of all the flowers in your garden. Memory is our friend--until it isn't.

As important as memory is, sometimes we make it into a god.

This scenario makes me cringe. I see variations of it too often.

The care partner comes in to visit. Perhaps it's been a few weeks, or the loved one is having a bad day. (Seemingly small events like a urinary tract infection, a cold or a bad night's sleep can cause memory to flee and the visitor to be met with a glazed look.) The conversation goes something like this:

"Hi, remember me? Do you know my name? Sure you do--think. What did you have for lunch? Well what did you do today?"

The visitor gets more panicky as question after question goes unanswered. The loved one may withdraw or become defensive and angry when faced with this barrage of questions. The visitor feels dismay at the lack of response.

Here's a better way to handle it:

"Hi, George, it's Charlie. We used to be next-door neighbours. It's so good to see you! I remember when we put up that fence together. What a project that was! Hey, I saw they had spaghetti on the menu for lunch. You always loved spaghetti, did you have that today? I bet it wasn't as good as Gladys use to make. Mmmm--my mouth is watering just thinking about it."

Notice, in the second conversation, memories were in the form of stories. The person could participate  ("Oh yes, you were always hitting your thumb when we made that fence.") or not, but no one is requiring them to remember. Even if they don't quite remember Charlie or the fence, they probably will remember Gladys' spaghetti, and the whole conversation invites smiles and commeradery without forcing participation.

Do you have photo albums? They are an excellent way to bring fun into the visit and may spark some memories.  However, drop "do you remember?" from your conversation. Instead say, "I remember when..." They may remember, also. or it might just be a fun story to share.

An important point to aways remember:

A person who can't remember is still a person.

Don't panic if there isn't a lot of interaction. Don't be hurt if they don't remember your name, or get the relationship wrong. (I'm not your mother, I'm your daughter!") Don't despair if they say you never visit, even if you were there this morning. What matters is that you visit and enjoy each other's company. You are not there to evaluate how much they have deteriorated since your last visit. You are there to celebrate them, enjoy them and spend time together.

You are there to make memories.

Your loved one may not remember that you visited after you leave.

But you will.

photo letter M-