Wednesday, 30 March 2016

Care Partner Wednesday--Doctor's Visits

Sarah was frustrated. She had placed her mom in a care home a year ago, and one of the reasons was...well...the care. Sarah had a full time job, and couldn't be with her all the time, and she found she worried about her all day long. The transition hadn't been smooth, but now she was settled and doing much better. The staff who cared for her daily needs were kind and Mom loved them. The nurses were great about keeping her up to date with any changes. Her frustration was the doctors.

She met her mom's doctor at the care conference, six weeks after admission. Sarah liked him, and found him easy to talk to and helpful. Trouble was, she hadn't seen him since then. She tried to be there when he came in, but she always missed him. Phone conferences were awkward with work, and she had so many questions. Then there were the specialists. Did every elderly person go to this many specialists? It was a huge effort to take Mom, and sometimes they would ask questions she didn't know the answer to. She didn't spend every minute with Mom any more, and although she wasn't confused, Mom sometimes had trouble answering, too.


“If you find it in your heart to care for someone else, you will have succeeded.”– Maya Angelou

Here are some tips for getting the help you need from doctors and specialists:

1. In a situation like Sarah's, she has two options to talk with the doctor who cares for her mother. She can ask the nurse to tell her when the doctor will be in, and ask to have some time with him to ask her questions. This way, the doctor can review Mom's chart and will schedule time in his day for Sarah. She should have her questions written down and have a note pad to jot answers.

The other option is to schedule a phone interview. This is also done through the nurse, but may be more convenient. Either way, expect to spend about fifteen minutes. if there are other siblings who would also like to be in on the call, a conference call is possible. In the common situation where some of the care partners are out of town, Skype is another possibility. Ask if the home is set up for this.

2. When visiting an outside doctor, or even something as simple as the dentist, take along a list of medications and a card for whatever health/insurance coverage you have. Both of these are vital. Also have a list of questions and a note pad. Make sure to keep track of any follow up appointments.

3. For any appointment outside the building, ask yourself and perhaps the attending physician this question: is it necessary? The toll an outside appointment takes on an elderly person may be more than the outcome is worth. Look at the whole picture.

  • Your mother may want to go back to the dentist she has been seeing for twenty years, but she may not realize how taxing the experience will be. If there is a dentist that visits the home, that may be an option.
  • She broke her foot, and you've made three visits to the fracture clinic. They said it's healing well the last time, she's walking on it and getting physiotherapy. Do you need to go back one more time?
  • The doctor ordered a test that can only be done in hospital on your 92 year old mother. What are you planning on doing with the information the test will provide? If you've already decided to forgo further invasive treatment and keep her comfortable, is this test necessary?
Like many care partner decisions, there are no right or wrong answers. You have to decide what is best for you and your loved one. 

The doctor is an important part of the team who cares for your loved one. What you need to remember are you.

Share with us. What tips have you learned that has helped in dealing with medical professionals?


Wednesday, 23 March 2016

Care Partner Wednesday--The Battle with Guilt

I sometimes picture the care partner as a warrior, travelling a journey with their loved one. Today, it's stress that beats them down and almost defeats them. Tomorrow it might be exhaustion or frustration or financial worries. Difficult decisions and the accompanying indecision can fling them to their knees. A sudden medical emergency can leave them gasping for breath. There are multiple battles, but one overshadows them all. The battle with guilt.

Why is guilt so insidious? Guilt niggles its way into every other battle, and the moment you think you have done well, it whispers its nasty little questions. "He really got to you when he said that, didn't he? You felt impatient. Did you keep it out of your voice?" Or perhaps guilt says, "That decision you made back there--are you sure it was the right one? You're really not very good at this, are you?"

You are not alone. Every care partner who has ever walked this journey has felt the same, and more. So how do you handle it? Here are a few suggestions:

1. Recognize it for what it is.

  • Are you struggling with a relationship issue with your loved one that goes back to your childhood? If that's the case, look at what can and can be solved. There may be some parts that can be resolved, but manipulation and selfish attitudes probably aren't going to change.
  • Are you a perfectionist who is setting unreasonable standards for yourself? Give yourself permission to let somethings go. Lower your expectations just a little, and focus on the relationship rather than the details. Look for the joy instead of the perfect.
  • Are you trying to reason with dementia? This will only lead to frustration and failure, which ultimately leads to guilt. Check out for tips on communicating with someone with dementia. Better communication leads to a more fulfilled relationship and less guilt.
2. Put on your loved one's shoes and start walking. There's a reason for what is happening that is causing you frustration, and it may take some detective work on your part. Are they in pain? How are they sleeping? Often, another infection (such as a urinary tract infection) can affecting how they act. If you see signs of anxiety, such as shaking, pacing or incessant questions, ask the staff what has been happening. They may be able to give you some insight.  If possible, have a conversation with your loved one, gently exploring some of these issues.

3. Sometime guilt isn't false. Check your own heart. Do you need to apologize for something? None of us are perfect, and we all have breaking points. If you have "lost it" and said something you shouldn't, apologize.

4. Give the gift of respect above all. You may need to have a difficult conversation or make an unpleasant decision or a humble apology. If respect for your loved one is your bottom line, you can turn your back on guilt. It has nothing on you.

And now, brave warrior, give yourself a break. Let the sun shine on your face, read a book, pray. Take a deep breath. 

Then get back on your horse and soldier on.

Wednesday, 16 March 2016

Care Partner Wednesday--The Cost of a Meal

Daisy shuffled into the dining room for lunch, as she had so many times before. She knew her way , and she knew they would feed her when she sat down in her chair by the window. Daisy could have sat anywhere, but her tottering steps always took her to her favourite chair. Like magic, delicious food appeared, and she enjoyed it. "You girls are so good to us old people," she would say as she patted her server's arm.

As the meal ended, and Daisy started to leave, a thought occurred to her. Who was paying for this? She hadn't brought any money. What was she going to do? Her brows drew together and her head swivelled from side to side. She waved to the server, who hurried to her.

"I don't have any money," she whispered. "Who is paying for this?"

"It's okay, Daisy. The meal is free."

Free? Daisy had lived through the depression, and she knew nothing was free. Beginning to get agitated, she tried again. "How can I pay?"

The server needed to get on to other duties, and wanted to extricate herself from the conversation, so she tried another approach. "Don't worry, Daisy. Your son paid for it."

Daisy didn't want to be a burden to her son. The server left before she could say any more, so Daisy got up to leave, but her pleasant meal was ruined. She left muttering and flailing her arms. She knew something was wrong, but she couldn't put together what it was. She was worried and angry and a little afraid, and she had no idea why.

Some days there wont be a song in your heart. Sing anyway. Emory Austin

When a care partner makes the heart-wrenching decision to move their loved one with dementia into care, things change. Lots of things. Many of these are good, which is why the upheaval occurred. Some are more difficult, and require a long period of adjustment.

Some, like the cost of a meal, are unique to people with dementia, living in community. It's not an issue with everyone, but when it is, it's a recurring problem.

There is no answer that works with every resident, or even works all the time with the same person. Here are a few approaches:

1. Saying, "It's free." seldom works. As with Daisy, people know things aren't free, and there's always a hitch. Suspicion is common among people with dementia, so don't add to it by telling them the lovely meal they just ate is free.

2. Sometimes, saying that their family paid for it works, and sometimes it causes more stress. If I use this tactic, I often say that they paid for it a month ago, so they should eat or the money will be wasted. If there's one thing seniors with or without dementia hate, it's waste! The fact that it was paid for a while ago sometimes overshadows their worries about their children taking on the financial burden.

Another way to approach this is, "Your son paid for it. Isn't he lovely? You did a great job of raising him." This approach takes the emphasis off the money and onto her relationship with her son.

3. There have been times when a resident has become so agitated regarding paying for the meal that they refuse to eat. They might come in, but when they see people being served, the stress starts all over again, and they get up and leave. Sometimes several times. This makes perfect sense, if you think of it. If you just sat down in a restaurant and discovered you had no money, wouldn't you leave as quickly as possible? In this instance, we have tried an official looking printed sign on the table which says, "Your meal is complimentary today." Something about the official look of the sign and the temporary nature of the message makes it okay. People like Daisy feel they are receiving a special bargain for this meal only. When they see the same sign at dinner, it will be brand new.

4. Daisy also has difficulty with activities like trips. She thoroughly enjoys boarding the bus to head out to a restaurant, a park or a museum, but asks me many times leading up to the event, "Do I have enough money? Who is paying for this? What does it cost?" In this instance, I tell her, "Christie Gardens (where I work and she lives) is paying." For some reason, this always works on trips, and she thinks it is lovely and generous of them.

All of this is an illustration of problem solving with people who have dementia. The bottom line is to be respectful and creative, realising that the problem is real, and so is the anxiety. As a care partner, you need to look at the the root of the issue with Daisy and find the solution that releases her from the pain of worry.

And sometimes, you need to be creative with the truth. Just a little.

Every care partner becomes adept at problem solving. Share with us a situation you faced and how you dealt with it. We need to learn from each other.