Thursday, 31 January 2019

Care Partner Wednesday--The Advocate as Care Partner

Many times I've remarked that everyone who walks the journey with an elder can be called a care partner. I've talked about the roles of professional care partners, those who serve the meals, family members, those who visit occasionally and volunteers.

What about the advocate?

What's an advocate? There's not a question I get asked more. Here's the short answer:

An advocate supports the care partners, the families and the residents, in that order, in their neighbourhood.

Supporting the Care Partners

In the traditional organizational chart, the CEO and directors are at the top, then there is middle management, a lower level of management, and finally people who don't manage anyone. Those who give the hands-on care and are on the front lines don't make the chart at all.

By giving "support the care partners" as the first and primary job of the advocate, we raise the position of the care partners to a more reasonable level. They give the care, they know the residents' needs, the processes and how things work best. Their ideas are based on experience. How foolish to not consult them.

I support the care partners by giving them what they need to do the job. Sometimes this means laundry detergent, or an updated list to record bowel movements or information about a new resident.

I also give them a voice. We meet regularly to discuss issues, look for better ways to run the neighbourhood and to solve problems.  We call these "huddles" and they are a great way to use the valuable resource of the care partner's ideas and experience. Outside of huddles, a care partner will often come to me saying, "I've been thinking..." Perhaps they have an idea to help a resident sleep better, or a way to rearrange a room to make it more efficient. Because they know their ideas are valuable, they are eager to share them.

I give them encouragement. It helps that I have an amazing team and I'm proud of the job they do, but I never hesitate to tell them. Sometimes, someone who has made a special effort will receive a card and a small coffee voucher. We celebrate their birthdays with a card signed by the team, a cake and a song. I write their performance appraisals and use these to recognize their efforts as well as look for opportunities for growth. Without these amazing people, our neighbourhoods would implode, as is evident when even one is away or late, and they should be encouraged daily.

Supporting the Family Members

Supporting family members is also supporting care partners. Families are often stressed, worried and sometimes not trusting that their loved one is getting the best care. By developing a relationship with them and frequent, pro-active communication, I can often deflect negative feedback that might have gone to the care partners. I listen, answer concerns, investigate problems, pass on messages, send pictures and tell about successes. When a resident is new, close communication is important to establish relationship and trust and allay the many fears of the transition process. When residents are sick or nearing the end of their life, it helps families to know there's someone they can ask the hard questions. After someone has passed away, few words are needed, just comfort and caring.

Supporting Residents

When I think about what I do in a day, this is the smallest part of my job. I support the care partners, who do the lion's share of supporting the residents. I help in the dining room with residents who need assistance with their meal. I answer call bells when someone needs help in their room. I chat with those who stop by my desk. I prepare a growth plan for each resident which tells about their personal history and share it with staff so they can get to know residents better. I might take clothing to be labelled or get a better mattress or make sure they have briefs. All of this is miniscule compared to the hands-on care of care partners.

You won't find a person with the title "advocate" in most care homes. However, it's important to understand the position and ensure, no matter what the title, that someone is there to support the professional care partners who care for your loved one, so they can give the best service possible.

Care partner Wednesday--The Advocate as Care Partner

Wednesday, 23 January 2019

Care Partner Wednesday--Diagnosing Dementia

"The doctor diagnosed my mom's dementia. I don't know what form of the disease she has, but they seem the same to me. He put her on some medication he said might help."

Statements like this make me shudder. Would we say this about any other disease? "The doctor said my mom has cancer. The disease might be in her liver or breast, he's not sure. He put her on some medication which might help."

Ridiculous, right? Yet so many elders don't receive a complete or accurate diagnosis, which affects the effectiveness of their treatment. Some general practitioners aren't familiar with the many diagnostic tools available, or some of the less common forms of the disease.

Here are steps to an accurate diagnosis and treatment:

1. Be Proactive and Thorough
Diagnosis needs to occur early in the disease. Because people with dementia can become experts at covering their mistakes, it may take months for family members to realize the problem. If you don't live together, symptoms can elude you. When it becomes evident that your loved one struggles with memory or other issues, take them to see their family doctor. Here you start your search.

When you visit the doctor, make a list of all the changes they experienced. Perhaps areas like hygiene or tidiness at home changed. Do you notice a variance in mood or stamina? Ask for a physical, and bring a complete list of their medications. Provide as much information as possible. When you have the results of this investigation, you're ready for the next step.

2.  Get Expert Medical Input
Ask your doctor for a referral to a geriatrician. All the testing done to this point can go with you and will lay a groundwork for what comes next. A specialist can diagnose the kind of dementia and follow up with treatment. Prescriptions for medications specific to your diagnosis and suggestions for treatment will follow.

3. Be Sure to Follow-up 
Nurture your relationship with your specialist. Regular visits will keep the doctor abreast of changes and should give you a forum to ask questions and gain support. Some of the original tests will become a baseline and further testing will help you understand how the disease progresses.

Last week we looked at some of the most common forms of dementia. Other, rarer forms underline the need for an accurate diagnosis. Not as well known, they can easily be missed or misdiagnosed. With several of them, early diagnosis makes a significant difference.

Wernike-Korsakoff Syndrome
Two separate syndromes which might or might not occur at the same time, this type of brain disorder, caused by a lack of vitamin B1, or thiamine, and can present with vision difficulties, leg tremors and confusion. The disease can be associated with alcoholism.

Creutzfeldt-Jacob Disease
Because the first symptom isn't confusion, but depression and mood changes, diagnosis can be difficult. Life expectancy is short and other changes such as deterioration in physical coordination soon develop. A correct diagnosis gives the opportunity to prepare for the future.

Frontotemporal Dementia (Pick's Disease)
Often affecting a younger population, this shows as changes in personality and behavior. You can understand, especially in a younger person, how this would be difficult to diagnose. People with Pick's disease often develop aphasia or difficulties with speech.

Huntington's Disease
This inherited disorder causes the death of brain cells. The resulting symptoms leave the person struggling with difficulties with walking, communication, thinking and swallowing.

This list, though not complete, illustrates how varied a diagnosis of dementia could be. Dementia can be associated with many different diseases and must be correctly analyzed for appropriate treatment.

As a care partner, perhaps just starting on this journey, you want to care for your elder as best you can. This most loving act ensures your elder gets comprehensive testing and a correct diagnosis.

Cae Partner Wednesday--Diagnosing Dementia

Wednesday, 16 January 2019

Care Partner Wednesday--Under the Umbrella

Picture an umbrella.

It's black and appears that it could provide shelter to a small village. This umbrella is called dementia.

If you hear that someone has cancer, one of your first questions is going to be, "What kind?" We understand that there is a myriad of different kinds of cancer, and each one affects the body differently. They have a different prognosis, different treatments and affect people in unique ways.

So with dementia. Dementia is an umbrella term. Under the umbrella live many different diseases. It's complicated, because there are so many, and each has aspects that are a little different from the others. As Dr. Bill Thomas says, if you've met one person with dementia, you've met one person with dementia. A diagnosis is a start, but factors like personality, medications, other health issues and environment can make an impact on how the disease affects each person. We're not trying to put people in diagnostic boxes, but rather use the diagnosis as a starting point for understanding.

So let's look at some of the different types of dementia.

Alzheimer's Disease
If we think of the umbrella again, a large section of it would be called Alzheimer's disease, as it's by far the most common diagnosis. Alzheimer's is progressive. Although someone with the disease may have a day where they are exceptionally cognitively alert and function well, the decline in their cognitive status can be seen clearly over a period of months and certainly years. Depending on the age at diagnosis, people can live with Alzheimer's for 20 years, although eight to ten is more common. Prevalent aspects are memory loss, especially short-term memory, poor judgement, word finding difficulty, and the need for more help in the areas of hygiene, eating, dressing and all aspects of daily living.

Vascular Dementia
Although the symptoms may look the same, vascular dementia progresses differently from Alzheimer's. Its source is from a stroke or a series of small strokes called transient ischemic attacks (TIAs) or unnoticed small vessel disease. Because its progression is based on a series of "events,"  it looks like a series of downward steps. The person with vascular dementia will continue stable for a period of time and then will have an "event" which causes a change. People often recover from TIAs, but usually have more than one, and they take their toll on cognition. Each TIA has the potential to cause permanent damage to the brain. The prognosis varies greatly.

Lewy Body Dementias

I'm sorry, but whenever I hear of this, I think of a little bald guy named Louie.
"Lewy bodies are abnormal aggregates of protein that develop inside nerve cells, contributing to Parkinson's disease (PD), the Lewy body dementias (Parkinson's disease dementia and dementia with Lewy bodies) and some other disorders."1 Lewy Body Dementia (LBD) is another umbrella term for a whole group of diseases where these Lewy bodies are present. Parkinson's dementia is one of these diseases. Lewy body dementia is another.

Parkinson's Disease Dementia

Not everyone who has PD will develop dementia, but about 70% do. The combination of the motor and other challenges of PD and the mental difficulties of dementia make this especially burdensome. Some people experience hallucinations, delusions, paranoia, vivid dreams and other difficulties. Cognitive symptoms begin at least a year after the motor symptoms and usually develop gradually.

This paints a bleak picture, but I know and have known some delightful people with Parkinson's dementia. They retained their sense of humour and love of people and blessed me whenever I was with them.

Dementia with Lewy Bodies

Under the umbrella of  Lewy Body Dementias, is Dementia with Lewy Bodies. Confusing, right? Someone should have come up with a different name. LBD involves both motor and cognitive decline. LBD is the second most common dementia after Alzheimer's and a correct diagnosis is important. One reason for this is that some medications that are used to control behavioural symptoms in Alzheimer's can actually make the symptoms of LBD worse. With correct medication and treatment, someone with LBD can improve and experience a good quality of life.

Next week we'll explore several other dementias, but I would like you to go with two takeaways.

Although dementia is an umbrella term, there are many specific and different diseases under the umbrella. Correct diagnosis is important to get the kind of help you need.

I'll end with Dr. Bill Thomas' words again, "If you've met one person with dementia, you've met one person with dementia." Even though the different forms of the disease present in a unique way and people react differently, they are still people. After the diagnosis and treatment, they still need to be treated with respect, caring and love.



Care Partner Wednesday--Under the Umbrella

Wednesday, 9 January 2019

Care Partner Wednesday--I Am Not My Disease

The first care conference is often long.

Held a few weeks after a resident moves into care, it's the family's chance to meet with the doctor, nurse, physiotherapist, chaplain, dietary department and advocate. Through questions and discussion, the team gets to know the resident better, and a plan of care is worked out. It's fluid, of course, and changes are made as needed, but it's a start.

We'd covered a lot of ground. The husband had given us valuable input as to his wife's character and what activities gave her pleasure. A new patient for the doctor, he learned her medical history. We discussed the transition time and how we hoped to make it as smooth as possible.

As an hour drew to a close, her husband turned to me and said, "I have just one more question. Is she going to get better?"

The room seemed to reverberate as the question bounced off the walls. How long had he held some hope, however faint, that this would pass?

I looked into his soft blue eyes and said, "No, she's not."

His look told me he'd known but needed to hear the words. "Is she going to get worse?"

Most days, I love my job, but right now..."Yes, she will get worse."

He cast his eyes to the floor and replied, "Thank you for your honesty."

"The thing is," I went on, "we believe that people with dementia can live full, even happy lives. We want her to have purpose and meaning in her days. To attend activities she enjoys and to feel as if she is at home here. Our goal is that she will have a quality of life and feel fulfilled, even to the latter stages of dementia. The staff care about her as a person, and the life she lives is important to all of us. She's in a good place."

His eyes returned to mine as what I said resonated with him. "That's reassuring."

It's not about dementia, difficult behaviours, forgetting a family member's name or putting your clothes on backwards. These things happen, but they aren't the focus of our day. It's about respect, family, laughing together, and feeling at home. It's about having a fulfilled life and feeling you still have something to contribute.  I've known elders with no cognitive impairment, but little quality of life, either, as bitterness at the ageing process has stolen their joy.

So my question is...which is worse?

Last May, I sat in a full auditorium listening to a man with Alzheimer's tell of his journey. It wasn't an easy one. His wife left him and wouldn't even let him keep the dog.  His children didn't understand, and aside from the loving support of the Eden Alternative crowd, he stood alone. Alone, but bravely, he said, "I have Alzheimer's, but it doesn't have me."

As care partners, we can enter an overwhelmed mindset. Bad things happen. Sometimes we are torn to the core by the changes we see. It hurts! But know this--the person you love is still there. They can live, and love and make a difference and add to your life. Don't give the disease more power than it should have.

Love them, laugh with them, appreciate them for who they are today. Don't let Alzheimer's--or any disease--have your loved one.

Care Partner Wednesday--I Am Not My Disease

Wednesday, 2 January 2019

The Small Miracle of Strength

You face a new year, and perhaps some of the struggles of the last year or two enter into the new year with you. January brings a fresh, unblemished calendar, but you carry your load and who you are with you. Sometimes, the weight of it bites into your shoulder as you try to move forward.

"You are strong."
"You'll be fine."
"Look at all the other hard things you've been through."

Over the last two years, as I struggled through the emotional roller coaster of separation, I heard these words. So many responses coursed through my brain. I am many things, but not strong.

Is it strong when your situation is thrust upon you? I didn't climb a mountain or win a medal. I put one foot in front of the other. Some might consider that strong, but I felt like I had no choice.
I'm told there is always a choice, and I guess that's true, but I couldn't drop out of life. I have to work and make a living. Even working full-time, money was tight, so curling up in bed wasn't a choice I felt I could make.

Strong? Did you see me hide in the bathroom and cry? Sit at my laptop and claim my allergies were bothering me? Bury my face in my dog's fur? Stay home from church for weeks because I couldn't face people? Quake in the lawyer's office? Feel my insides twisting into mush while smiling and dealing with issues at work? Strong?

I know your words are meant to encourage me, to build me up, to help me believe I can come through. The truth is, they invalidate my pain. It's as if you are metaphorically punching my arm and telling me to stand straighter and deal with my situation because I am strong.

I. Am. Not. Strong.

I value courage, and in the past few years, God has been drawing me from a tiny, shrinking life, where fear influenced every decision and I made only safe and easy choices. He showed me the person fear was turning me into, and it shocked me enough to ask Him to help me change. One Sunday in church, the pastor was talking about the new name God gave many of His servants when they chose to follow Him. Abram became Abraham. Jacob became Israel. My friend leaned over and said,
"Your new name is Courage,"


I took faltering steps toward courage. I fell. I turned back and embraced fear. I took a step, rejoiced and fell again. I moved forward by painful inches. You would think that each victory would make the next step easier, but it didn't. Even today, I struggle.

God doesn't tell me I'm strong. He knows me too well for that. He tells me to be strong.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9 NIV God offers me His strength, which is an unfathomable resource. He takes my quavering efforts and says He will be with me. Holds me. Picks me up if I fall and grabs my shirt if I try to run away. He never gives up on me. Never.

Because of that, I can be strong, even if I'm not strong.

We bring all of our baggage into this new year.  We bring who we are, for better or for worse. We don't know what this new year holds. But you, like me, can be strong.

Listen to what He is saying to you:

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isaiah 41:10 NIV

Be strong, my friend.

The Small Miracle of Strength