Wednesday, 28 January 2015

Carepartner Wednesday--The Carepartner's Alphabet--F

F is for family.

Family is interesting. They can be your greatest blessing or--not.

Most of the time, families are amazing. They go out of their way to love their family member in ways that count. I have seen them sleep over on a mattress when their loved one was going through a tough time, find a way to take them somewhere special when trips out are a major excursion and visit when their hearts were breaking. Families bring the outside world to the loved one, and they have a connection and history like no other. If you are a family member of an elderly person, you have the possibility of bringing gifts of caring, time and laughter with you with every visit.

However--families aren't perfect, and if there are problems before, you can guarantee the problems will continue or get worse.

Here are some families I have met:

1. The absent family. In spite of the horror stories you hear, this one is rare. Even if family is scattered across the country, they use email, Skype and phone calls to keep in touch, not only with their family members, but also with staff. When loved ones have difficulty hearing, or can't communicate, being in touch with those who care for them is important. I'm sure the absent family exists, but I have known very few.

2. The "daughter from Florida". In this family, there may be family members who you see all the time, and they are the main care partners. But one sister (it's almost always a sister) lives far away and comes once or twice a year. They can be from British Columbia or Timbuktu, but they come in with a critical spirit and a campaign to find fault and change everything. They create havoc for the length of their stay and then they leave and we can all breath again.

3. The major sibling. In any family, a leader emerges. This is the sibling who is always there, and the one you call when something goes wrong. You depend on them to talk to the others. In fact, you depend on them for everything. So does everyone else, and they need to look after themselves or they will burn out.

4. The minor sibling. There may be more than one of these in a family and they are in the background. They don't visit as often. They may be lovely people (often they are) but they are not the leader and they have to check with the major sibling for decisions of any magnitude.

5. The co-dependent. There are some family members who seem to have no life beyond visiting their parent and spending time with them. They are wonderful children--supportive, caring, loving. However, I worry about them. After Mom or Dad passes away, they have a difficult time getting over their loss. They need to be needed in the ways their parent needs them, and it's not a healthy relationship.

6. The second generation. Perhaps a son or daughter is the primary caregiver for Mom, but their daughter remembers Grandma as a different person, and can't relate to who she is now. The second generation can cause all kinds of stress for the primary care partner if they don't accept the changes they see (or don't see) and don't understand. They can cause untold stress if they want Grandma to live up to the person they remember.

7. The queen of de-nile. When family sees changes in the one they love, it hurts. Whether it's physical  deterioration or dementia, if the response is to deny it, it makes life difficult for all involved. In a family, if one sibling is in denial, there is often anger and strife.

8. The micro manager. This family member deals with the situation by trying to control every aspect of care. Their expectations are unrealistic, and they scare staff, because they can never be pleased.

In spite of all the negatives listed above, families are the lifeline for their loved one. They have the relationship, the memories, the love and the knowledge of that person to help professional care partners to know them and serve them well. Those of us who work in the industry love the families. We depend on them, become friends with them and need them.

Communication is the key. When someone new moves into my neighbourhood, I spend time equally with the resident and the family, working to get to know them as a person. When they have concerns, I listen and problem solve. If family lives out of town, we email frequently. Communication helps them to trust and to feel we are on the same team.

Family is a gift to an elder. They have a unique relationship and a unique opportunity to bless those they love.

Wednesday, 14 January 2015

Carepartner Wednesday--The Carepartner's Alphabet--E

E is for entertainment--fun.

The life of a carepartner is full. Medications, doctor's visits, care, new challenges and new problems to solve fill the days. I know there are times it can get exhausting. The last thing on your mind is fun.

Which is precisely why it's important.

It's usually last. It often doesn't "work." It can be as much work as work.

What's the point?

Sarah Rowan, whose husband had Alzheimer's, tells the story of taking him to a baseball game. He always loved baseball and although it was a huge effort to get him there and situated in the stands before the game began, she thought it might create a "moment." All carepartners know about "moments"--those magic times when everything comes together and the light inside comes on. There is understanding and joy and it is beautiful.

Sarah barely knew a football from a baseball, but the team was doing well at the start of play, something unusual for them. She remarked on this to her husband and he said, "Well, it's okay, but next time I'd like to watch baseball." Instead of expressing disappointment, or correcting him, she smiled and said, "You're right. Next time, we will make sure to watch baseball." 1 Sarah Rowan knew    a basic principle of entertainment with dementia:

1. You can plan, and it may or may not be "magic." Either way is fine.

Sarah's focus was on serving her husband. Even though he didn't realise he was at a baseball game, they were together on an outing and it was a pleasant time. She could have thought, "We could have had as much fun as this walking around the block for a lot less work." but she didn't. Planning is still important, it's the expectations (yours) that need to be adjusted. That way, just being together can be the magic.

I remember a resident who loved planes. He flew one in WWII. On his 90th birthday, his family arranged to take him for a helicopter ride. Imagine the planning involved in taking a frail elderly man who walked only with the aid of a walker, on a helicopter. However, this time, the planning produced magic, and he was delighted. At 95, he would look at the picture in his room of him being held up by his two sons, standing beside the helicopter. He would say, "I would do it all again tomorrow." That was magic.

2. Often, the magic happens when you least expect it. When it does, embrace it.

Every week, we have a fellow come and play the "oldies" on the piano. He's lively and the music is great, and it's always a good time. It astounds me, however, that with the same entertainment, the same people, and pretty much the same music, some weeks are magic, and some are just nice.

Last week, about 45 minutes into his hour, a daughter was inspired by the music and got her mother to her feet. In no time, they were bouncing to the beat (even though Mom couldn't possibly have stood on her own. I asked a man in a wheelchair to dance and we moved around the room having great fun. Another staff member and a resident stood to their feet and began to move around. The atmosphere went from fun to magic and ended in spontaneous applause and laughter. We embraced the magic.

3. There is magic in every day. Look for it.

Some days are hard, there's no denying it. Today was one of them, as problems barraged me all day, and practically followed me out the door. In spite of this, there was magic, if I looked. A man with dementia laughing at the lunch table at the antics of a care partner. The glow on a resident's face as I whispered in her ear that she looked sexy in her clingy skirt. A man with dementia making a joke that made me laugh.

Entertainment--fun, is an attitude of the heart. There are those who are convinced that a diagnosis of any kind of dementia means the fun in life is over.

They couldn't be more wrong.

Sunday, 11 January 2015

The small miracle of "just because"

Have you ever given someone a "just because" gift?

You're in the mall or the grocery store, or any number of places doing your normal errands, when you see something that has someone's name written all over it. Not literally, but it just seem to shout "buy me" for that person. It's unique or funny or special. You can immediately anticipate the pleasure on their face, so you pick it up for them. You don't set it aside for Christmas or a birthday (if you're like me, you couldn't possibly wait that long) but give it to them right away.

"What's this for?"

"Just because."

God gave me a "just because" present recently and it blew me away.

I love my coffee in the morning, but all I need is one or two cups and I'm done for the day. I'm not much of a water drinker, especially in the winter, so the rest of the day I drink herbal tea. It gets busy at work and my mind is filled with my next task, so I often realise in the afternoon that I am parched and have a headache from dehydration. Standing waiting for the kettle to boil and making myself a cup of tea just doesn't happen some days.

At home, we have one of those single serve coffee makers and when you want tea, you stick your tea bag in your mug, make sure there's no pod in the pod-holder-thingy and pull the lever. Almost instantly, boiling water comes out, and you have your cup of tea. If my mother was alive, she'd be horrified at this non-traditional method, but it works for me.

Wouldn't it be great if I had one of those at work? I could make my tea quickly and get on with my day.

Okay, it's frivolous. I can boil the kettle, or walk down the hall to the next neighbourhood, where they have hot water on tap. If I'm rushed, I don't. But I could.

During the Boxing week sales, I even scanned the ads, looking for an amazing, here-take-this-for-almost-nothing deal on one of those machines. There were no deals. In fact, the reduced prices were only about $20 cheaper than the regular price. I checked kijiji. Still nothing in my price range (which was, unrealistically, "almost free.") I gave up on the idea. Oh well.

The day I returned to work after Christmas, I walked into the Family Room, gasped and jumped back, scaring the bejeebers out of the care partner just behind me.

She rushed back into the room she had just exited. "What? What's wrong?"
"There's a Keurig in here," I said in awe.
She looked at me. She looked at the machine in question. She left the room. Only one day back and she's lost it already. Sad.

I stared at it. The top had a piece of tape with the name of our newest family. Obviously, it was put there so they could make their favourite coffee when they wanted, but also to share with the rest of us.

"Thank God, who did it all. His love never quits." Ps. 136:26 (The Message)

Just because.

Wednesday, 7 January 2015

Carepartner Wednesdays--The Carepartner's Alphabet--D

D is for Death. Death is inevitable.

There are few experiences in our lives which we absolutely know we will experience. Death is one of these. The problem is, we don't know when and no matter what our age or physical frailty, we always think we have more time to think about this.

I've often pondered my husband's last weeks of life. He had a diagnosis of cardiac myopothy and had been steadily deteriorating for months. He went to hospital because the visiting nurse said he was on the brink of cardiac failure. He spent a week flat on his back with a monitor on his heart and was at the top of the transplant list. He had surgery three times in that final week and was in cardiac intensive care. In spite of all this, it wasn't until two days before he died that I even considered the possibility he might not survive. Even when the call came and we rushed to the hospital, I was experiencing an enormous sense of unreality. I couldn't believe he was going to die.

True, he was only 55, but I have seen this reaction in much older people. Death makes us uncomfortable. We don't want to think about it.

I'm the same. I will fight with all that is in me to live to the fullest every day of my life. But when the time comes to die, I hope I will let go of life graciously.

A good death requires some planning, having uncomfortable conversations and making decisions before the event is upon you. Here are some considerations:

1) Death is inevitable, but pain is not. When someone is considered "end of life" (which is different from palliative) there should be no pain. None. By "end of life," I am talking about a short period of time when medical staff (and others) realise any further treatment is useless and death will come in the next few hours or at most, days. All medications other than treatment for pain are stopped. Nothing is given by mouth unless requested. Everything in the body is slowing down and ending its function. During this time, medical staff watch for any sign of discomfort. A groan, a grimace, or restlessness might mean the person is uncomfortable and pain medication should be given.

2) What about being sent to hospital? At what point do you want to stay where you live and not go to hospital for further treatment? What about CPR? At what point do you not want to be revived?

3) Where would you like to be when you die? Who do you want there? Would you like music, someone reading the Bible, family near? These are things you need to talk about.

4) What about afterwards? Do you want to be buried or cremated? A funeral or memorial or nothing? It is your final love-gift to your family to discuss what is important to you. If you are a care partner, you need to have this difficult discussion with your loved one.

One thing about death is always true. When it comes, it changes forever those left behind. As a care partner, you can ease some of the effects of this by thinking about these and other questions today.