Wednesday, 30 December 2015

Care Partner Wednesday--Five Myths about Alzheimer's

When you begin your journey as a care partner, there is so much to learn. This is especially true if your loved one is suffering from Alzheimer's or another form of dementia. You are full of questions.

"What will happen? How fast?"
"What can I expect?"
"How do I handle________?"
"What does it mean when____?"

Because it is all new and you are thirsty for information, you may look to all kinds of sources, including some that aren't credible. (But how do you know?) You also want to talk to others who are coping with the disease, and although this is valuable, their experience isn't your experience, and anecdotal truth isn't necessarily true.

Five Myths About Alzheimer's Disease

5. When someone is diagnosed with Alzheimer's disease, you lose a little of them every day, until there is nothing left. Their body is there, but the mind, spirit and emotions are gone and you are left with an empty shell.

I find this myth particularly disturbing, because it is so prevalent and because it is so wrong. There will be losses, there is no denying it. The person will change. But isn't that what we do as humans? We grow and change. I am not the same person (inside or outside!) that I was at 20. And I have had losses. There are things I can't do any more. Things I will never do again. But I am not defined by what I can or can't do, or remember. I am more than that.

Daily, I see people in the last stages of Alzheimer's laughing, telling jokes, dancing, singing, playing the piano, visiting with friends...the list goes on. What are they doing? They are living. People with Alzheimer's have purpose and value.

4. People with Alzheimer's can't learn anything new.

I used to believe this, but I've seen it disproved over and over again. When people move to our care sections from living independently in an apartment, it is a tremendous upheaval for them. I can take up to six weeks to fully adjust. In the first few weeks, they may end up back at the door of their apartment, wondering how to get in, or looking for their room in an entirely different section of the building. But they adjust. Eventually, they learn that it's a right turn down the hall to the dining room, and that  this room contains all their treasures, is indeed theirs. It usually takes heaping portions of patience on the part of care partners, but it is possible.

3. People with Alzheimer's lose their personality.

Again, not true. Aspects of personality may change, and you may see behaviours you haven't seen before. Some may loose the social mask that kept them from saying whatever they were thinking, leading to funny, or sometimes insulting comments. Others may become angry when they never were before (or didn't show it.) But the essence of who they are remains. You might see the sarcastic edge, or the emotional side, anger or anxiety, but the person is still there. They may be changed and there may be times when you have to search for the best way to connect, but it a search worth taking.

2. People with Alzheimer's aren't aware of what is happening around them.

The opposite of this is true. It seems that, as the faculties of speech, memory and other abilities fade, the sense of people's emotions is heightened. It is difficult, if you are upset when coming in to work, to hide it. Residents with dementia sense it without a word being spoken. It's incredibly touching to me that, when they sense there is a problem, they try to solve it. A word, a smile, a touch, a hug. People with dementia are the most loving and caring, and being among them is therapy.

1. Being a care partner is all about giving 24/7.

You will have times of exhaustion, and the demands can be great. But you will receive. You will laugh, you will be hugged, and you will have times of incredible fulfilment.

Seventeen years ago, when I started in elder care, I worked exclusively with people with dementia. I was as green as they came, and stumbled around (figuratively) trying to find my way and make a difference. A woman called Florence had Alzheimer's and an anxiety disorder. She always looked as if she was going to burst into tears, and I searched for ways to help her. One day, as she rested on her bed in the afternoon, I sat with her for a few minutes, holding her hand. She opened those faded blue eyes, looked at me and smiled. "I feel safe with you," she said. All these years later, I remember her, and how she gave back to me that day.

If you are a care partner of someone who has been diagnosed with Alzheimer's disease, I urge you to contact the Alzheimer's society in your area for hundreds of valuable, credible resources.

Wednesday, 16 December 2015

Care Partner Wednesday--A Different Kind of Care Partner

Care comes in all different forms.

Professional care partners, such as personal support workers, give one level of care, and they are needed for the hands-on care for people who can't perform the activities of daily living on their own.

Not everyone who needs care is unable to brush their own teeth or dress themselves. Today, I am thinking about a person who has lost a loved one recently. For at least the first year, and often much longer, they need special care that is sensitive and understanding. Ministering to someone who is grieving is not acting as a traditional care partner, but the care is at least as important. And you may be the only person who can give it.

When my first husband died, I felt lost. I had been a wife for thirty years, and I had no idea how to be a widow. The tax office asked me questions. I had no answers, and started to cry. The bank wanted to know things. I didn't know what they wanted, and started to cry. The insurance company...well, you get the picture. I functioned at work, but when I came home, I wandered aimlessly through the house, not able to focus. I could see what needed to be done, but I had no idea how to start.

I'm not normally like this. I am organised and have lists, both in my head and on paper. I accomplish things. At that time, my head felt like it was full of quilt batting, and pushing it aside to accomplish my daily tasks required tremendous effort. Beyond the normal activities, there are mountains of assignments associated with death. Cards and social insurance numbers and driver's licences and a multitude more need to be cancelled and government departments informed. In my case, money was tied up and bills needed to be paid, and that was a worry. Each day, I felt like I was slugging through heavy mud, just to stay in the same place.

But I had care partners. Two friends decided together to go out to dinner with me around all the "firsts." My birthday, his birthday, Christmas, Valentine's Day--every date that might be significant and difficult, we got together in a local restaurant. Sometimes I wanted to talk and sometimes I didn't, and both were fine.

One friend took me with her while she did errands, so I wouldn't have to spend every night alone. Both of them took on the monumental task of helping me organise a garage sale. They were there, even when they weren't physically in the room. There came a time when I needed the support less, but by that time, we decided meeting for dinner was great for all of us, and it became a monthly event.

Years passed. I remarried, and with the help of another friend, they organized my wedding. We continued to meet every month. Then this year, in the spring, the unthinkable happened. The husband of one of my friends fell down a set of stairs and, after five days, he died. Not having any warning that life was going to take this tragic turn, she was stunned. Several months later she said, "I'm just beginning to believe this isn't a bad dream I'm going to wake up from."

So, we meet each month. Sometimes she wants to talk, and sometimes not, and both are fine. Last Saturday, we put up her Christmas tree (a job her husband always did) and ate pizza together. We laughed at the antics of her new puppy, because even in the midst of intense pain, laughter is possible.

I have been called to be both the cared for and the care partner. It's made me aware of those around me. As Christmas nears, take stock of those you know. Are there people who need you to come alongside--to have dinner together, to listen or to organise a garage sale?

Are you being called to be a different kind of care partner?

Wednesday, 2 December 2015

Care Partner Wednesday--Facing the Fear part 2

In it's most extreme form, fear:

  • cripples
  • consumes
  • limits
  • empties life of it's quality and joy
  • takes
  • diminishes
Fear makes your world small and confusing. For the care partner, especially one new to the job. or facing a change, fear  can lead to wrong information and wrong choices. When you are afraid, you tend to reach for whatever lifeline is thrown, without considering all the choices.

So how do you handle fear? Here are some ideas.

1. Learn as much as you can. At the beginning of your journey, this can be overwhelming. Not only is there information about whatever disease you are dealing with, the health care system has it's own language, and probably you don't speak it. There are forms and processes and medications and protocols. Ack! Too much. Read what you can about the disease, and make notes. If you don't understand something, write it down. Later, you can...

2. Ask questions and keep notes. With doctors, it is best to prepare as many questions as you can think of ahead of time, and then prioritize them. Nurses are also a great source of helpful information, and may be more willing to spend time with you. If a word comes out in conversation that you don't understand, ask.  As time passes, you will begin to get a picture of what is happening and your options. You will come to a place where you can make better decisions.

3. Find a friend. Another care partner is ideal, as you can share your journey. However, what you need is someone who will be willing to listen when you need to talk. This can be anyone. Even if they don't know what you are going through, a compassionate friend who will let you vent is a valuable resource. You aren't looking for answers from them, but support and comfort.

4. Realize there are many things you have little control over. Medical changes, cognitive changes, and the dreaded "what happens next?" are all out of your control. Spending your precious energy worrying about tomorrow and what it may bring, is foolish. You can't change it by worrying about it, but it can change you. If you dwell on what might happen, you might miss what is happening today. I'll say it again--focus on today. You have today with your loved one. Look for the joy in what you have.

5. Being a care partner can be all-consuming. Even when you aren't with your loved one or dealing with things that involve them, you're thinking, thinking thinking. You are trying to solve problems in your head and worrying and thinking some more. The reality is, though, that some day you will have to say good-bye. Not only will you no longer have this all-consuming job of care partner, but you will not have this significant person in your life any more.

Probably you don't want to think about this. You should. Spend some time today thinking and praying and planning for that day. For today, make sure you say all the things you want to say while they are alive. You have this opportunity. Take it. Then, spend a little time thinking about what your life will be like when they are gone. Make a plan, even if it's only partially defined, of how you will spend your time when your role as care partner is over. I have seen people who have no idea how to live their lives when the person they gave every minute to, is gone. Don't make that mistake.

Without realizing it, you can allow fear to steal parts of today that should never be his. Recognize that possibility, take control and take back today, and tomorrow.