Wednesday, 10 July 2019

Care Partner Wednesday--Hopeful Ideas to Energize Your New Life As A Care Partner


My wedding day. My parents lived an hour's drive from the church, so the wedding party couldn't dress at their house. Our small apartment on the third floor didn't suit either. Enter Nancy Smail, who offered her attractive house, a sumptuous breakfast and the loving care this young bride needed.

That nurturing act probably seemed small 42 years ago, but it defined the faith and caring of the Smail family. Over the years of raising my family, my husband's death and life in general, I kept in touch with Nancy through friends, and eventually Facebook. That was how I learned of Doug's diagnosis of Alzheimer's. Nancy graciously agreed to share the journey of her early days as a care partner.

"I met Doug in grade nine when I was twelve years old. We didn't date until he finished Queen's University with an Engineering degree. We've been married 53 years. An incredibly intelligent man, he was a professor at Ryerson University for 38 years."

What changes did you see in Doug that started to cause you concern? Did he see them, too? He began to have trouble with mechanical things that used to be easy for him. We had to sell our cottages as Doug couldn't figure out how to maintain them, a task that came naturally to him before as a mechanical engineer. He wasn't aware and still isn't, attributing all the changes to ageing. He had a tremendous intellectual reserve which allowed him to cover up and appear normal to almost everyone.

How long from the first time you began to notice issues until diagnosis? Doug had a stroke in 2006 and our family doctor quickly diagnosed him with Alzheimer's and gave him five to seven years to live.



Tell me about the diagnosis, and your reactions, as well as those of Doug and your family.  I was in disbelief at first. The doctor didn't tell Doug as he said he was concerned Doug would give up hope. My children didn't believe me. My daughter, Dawn, who is a nurse, went with me to the doctor and had the diagnosis confirmed.

Our doctor's refusal to tell Doug caused so many problems. My family wouldn't believe me, and that was difficult. When I broached the subject with Doug, he would say, "Well the doctor didn't tell me." I understand the doctor didn't want Doug to lose hope, but he didn't consider the effect of his decision on other family members. I don't agree with his decision as it prevented Doug and me from strategizing for the future.

How did you find taking on the role of a care partner as well as a wife? Did they conflict in any way? As the disease progressed slowly, it wasn't difficult at first, but as time passed my roles changed and I was more involved in his care. This caused some tension. I first took over paying all the bills, and this was stressful for Doug. He suffered a TIA* (see explanation below) as a result of his anxiety. I also eventually took over all of the driving. It affected our lifestyle in many ways, and at first, I was resentful. However, by God's grace, I have accepted this as a gift from God to fulfill His plan for Doug and I and our marriage.

I was in denial for a long time. Learning to accept came slowly, and I have been losing my husband by degrees for many years now.

What was the role of your friends in your journey?  I told my friends immediately as I needed their support.  They were there for me from the beginning, eager to help in any way they could. They began to accompany me on trips to do activities with Doug and relieve me. I appreciated the much-needed break.

How has your faith affected your experience? I can't say how many times in a day I cry out to God and say, "Help me, Jesus!" Without my faith, I wouldn't be able to carry on and would have suffered burnout many years ago. God told me at the beginning of this journey that He would be with me throughout, and He has been faithful to His promise.

What advice would you give to someone just starting out? What supports were the most helpful? Learn everything you can quickly and connect with solid supports like The Alzheimer Society. Let your partner do as much as they can for as long as they can, and don't be too hasty to take over for them. Doug drove until recently although some thought it unwise. We also took a major trip recently against some people's advice due to Doug's profound memory loss. He did get lost at one point, which was scary.

Be open and honest with family and friends and don't be afraid to tell them that the journey is hard. I recently said, "I am learning joy in the midst of my pain."



*"Transient ischemic attack (TIA) is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage. Often called ministrokes, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack will eventually have a stroke, with about half occurring within a year of the transient ischemic attack."1

1. https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679

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Care Partner Wednesday--Hopeful Ideas to Energize Your New Life As A Care Partner

Wednesday, 3 July 2019

Care Partner Wednesday--How to Begin Your Alzheimer's Journey in 3 (Not So) Easy Steps



I'm writing to you because it's so much more personal than a blog post, and the diagnosis your received last week is as personal as it gets. Alzheimer's. I bet you're still in a fog, trying to assimilate what this means for the rest of your life.

Can I give you some advice? (You know me, I'm going to give it anyway. Why do I even ask?) Just breathe. Give your self as much time as you need to think and pray and grieve. Yes, grieve. You are facing losses and a different life than you imagined. Give yourself time to grieve.

But don't stay there. At some point, you need to square your shoulders and say, "What will my life look like now?" and "How do I want it to look?" You get to decide at least some of that, you know.

Things to give up

As we age, we all bump up against experiences we will never have again. I remember the day I realized I would never nurse another baby. This wonderful, nurturing experience had been a part of my life for the past 10 years, but when my last baby left it behind that season ended. It hurt, and I cried some private tears. (There's that grieving again.) But soon I happily moved into the next season with my children.

There will be areas of your life which will change with this diagnosis. Some change may be immediate, and some you might need to grow into. From what I've seen, as difficult as it might be, making your own decisions about what to give up and when is the best way to go. It gives you power. You are in control.

Take driving, for example. That's a big one. It's your independence, and life is not only complicated but humiliating without a vehicle. You ask for rides and feel like a burden. Your natural inclination is to hang on as long as possible, even though you notice your responses getting sluggish, and you're afraid of anything but the most familiar routes. Then one day, your son comes over and sits you down to talk about your driving, or the doctor revokes your licence. It's humiliating. Why not take control and make the decision yourself? Impress the socks off your family by learning how to use Uber, and voila--you're independent again,

What other decisions might land in the "give up" pile? Perhaps, once you get over the fear of living somewhere different, you would enjoy the freedom of a smaller place. Maybe the lonliness you struggle with could be dealt with through living in community.

After you get over the initial shock, spend some time looking at how you'd like to live your life. Are there decisions you could make which would give you control, and a life that looks more like what you'd like?

Things to decide

While you're on a roll of taking control, there's a lot of decisions you need to make. You're a smart lady, so you may have already thought of some of these, but let's look at them anyway.


  • a will--you probably have one, but does it need to be updated? Pull it out of it's file folder and have a look. Maybe you've added three grandchildren to your family since it was written.
  • powers of attorney--You'll need a POA of care who will make decisions about your care when you can't, and a POA of finance who will look after your money. If you have more than one person, should they be able to each make decisions, or do they all have to agree before a decision is made?
  • Grab yourself a big mug of tea and go sit on the porch swing. You have some thinking to do. When the day comes when you can't live alone, where would you like to live? I don't mean a specific place, because that's a lot to figure out. But what would you like it to be like? How would you like to be treated? What's important to you?
          Knowing I was writing to you, I did some thinking myself. I've discovered over the last few 
          years that I can't live without gardens and flowers. Preferrably ones I can help with. And I don't 
          want anyone getting me up until I'm ready in the morning. And I'd like to have good quality 
          Greek yogurt whenever I want it! The bottom line is flexibility and respect. Take a notepad out 
          to the porch swing and start writing a list of what matters to you. When it's ready, share it with 
          your kids, and make sure they listen.
Gather your tribe


You can't do this alone! Your family loves you and will be there for you, although they will have lots to learn along the way. But what about friends? You're going to need those who can listen and visit and be there when you just need a cup of tea and a chat. Think about who those friends are, and chat with them. Let them know what you are facing and what kinds of care would mean a lot to you.

Look for others, too. The Alzheimer Society has all kinds of wonderful resources, and you may find new friends there.

You still have so much to give, my dear. Alzheimer's is scary, but you can live a full and fulfilled life. Especially with a little planning. And while you're gathering your tribe, make sure I'm on the list.

Your friend,
Ann



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Care Partner Wednesday--How To Begin Your Alzheimer's Journey in 3 (Not So) Easy Steps

Wednesday, 26 June 2019

Care Partner Wednesday--How To Thrive After A Diagnosis of Dementia



"You have dementia, probably Alzheimer's type."

Time stops. None of the rest of the world exists. At this moment, only you, the doctor and this room matter. The walls seem to close in and there is a strange whistling in your ears. Alzheimer's? It's Alzheimer's?

You already strongly suspected, but the seed of hope still sprouted furtively in your soul. Perhaps an underlying cause could be found. Perhaps a medication would take it all away.

With six words, the doctor reached for that seedling of hope, grabbed it out of the soil of your soul and threw it on the ground.

Hope is dead.

Or is it?

For twenty years, I've worked with frail elderly people, many with Alzheimer's or other forms of dementia. They are the kindest, most delightful friends I have, who care, make important contributions and forgive my mistakes in an instant. Although devastating at first, especially to their families, they don't allow their diagnosis to define them.

Last year, I sat in a packed auditorium and listened to a man describe his journey with Alzheimer's. He'd experienced losses, and they weren't all memory. His wife left and took his dog. His children didn't understand. Although supported by friends, his family had all deserted. Yet he spoke to hundreds of people, and said, "I have Alzheimer's but it doesn't have me."

Those words resonated with me. No matter what disease someone is diagnosed with, their personhood remains intact. They will change because we all change and grow until we die. I'm not the same person I was at 20, a fact which gives me joy. I've grown, matured, handled challenges and become a better version of myself. This is possible for anyone, even someone with dementia.

I remember a care conference in January with a husband whose wife had just come to my neighbourhood. He lived independently in our apartments and was worried and weary. He asked many insightful questions as he struggled with understanding. Finally, he said, "I just have one more question. Is she going to get better?"

Time stopped. A breath and then another. I looked into his soft blue eyes and said, "No, she isn't."

He looked at the floor. "Is she going to get worse?"

I love my job, but not at this moment. "Yes, she will get worse." He met my gaze and said, "Thank you for your honesty."

"The thing is," I went on, "we believe people with dementia can live full, even happy lives. We want her to have meaning and purpose in her life, attend activities she enjoys and become part of the community. Our goal is that she will have quality of life and feel fulfilled, even in the later stages of her dementia."

Thursday, 13 June 2019

Care Partner Wednesday--5 Simple Strategies To Care For Yourself When You Don't Know How

Welcome to your flight care partner journey. Fasten your seat belts because it's going to be quite a ride. There are many instructions, but here's the most important one. Put your own oxygen mask on first.




We've all watched or tried not to watch, the boring movie about seat belts, exits by wings and washrooms. The oxygen mask falls from the ceiling for no apparent reason and a mother calmly puts it on her child first.

The picture this paints seems unrealistic. What harried parent wouldn't grab for the mask, screaming, "We're all going to die!" Still, it makes me think.

Why do we have so much trouble putting our own mask on first?

Applied to care partners, why is it so hard to take care of ourselves?

Here are some reasons given:
"I don't have time."
"Compared to my loved one's pain, my complaints are small and unimportant."
"My head is so full of the details of their care, I forget about myself."

These aren't excuses. Each of these and other statements are legitimate. Caring takes gobs of time and heaps of headspace. But consider this:

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Sanford University, 40 percent of Alzheimer's caregivers die from stress-related disorders before the patient dies. 1

Sobering, isn't it?

Here's the bottom line:

Look after yourself or you won't be here to look after your loved one.

How do you do it? It's nothing you haven't heard before, but with statistics that high, it bears repeating.

1. Get Enough Sleep

Everyone is different in the amount of sleep they need, but it's a good guess that you aren't getting enough.

  • Don't stay up to get things accomplished when your loved one goes to sleep.
  • Take a nap when they do.
  • If they wander or are wakeful, hire someone for several nights a week to be with them while you sleep.
2. Drink Enough Water
  • Fill a large water bottle with water and ice and take it with you wherever you go. Flavour it if you have trouble drinking water as I do. 
  • When it's empty, fill a large water bottle...
3. Eat Healthly Food
  • Don't bring junk food into the house, except for a rare treat.
  • Make sure there are healthy options of finger foods available that you can grab on the run.
  • When you are able to cook, make larger batches and divide into meal-sized portions for freezing.
  • When you don't have time to cook, have simple options that are quick to prepare and easy to grab on the run, such as fish sticks, cheese, cut-up fruit etc.
4. Physical Health
  • Keep doctor's appointments for yourself.
  • Deal with any physical issues. Don't put things off.
  • Exercise, even in small increments. Use the stairs instead of an elevator, or park at the far end of the parking lot.
  • If you have a friend or family member staying with your loved one, resist the temptation to run around like a crazy person getting things done. Use the time for you and take a walk. Let nature speak to you.
5. Emotional/Mental Health
  • Acknowledge your feelings. Are you angry? Depressed? Frustrated? Name what it is you are feeling so you can begin to deal with it.
  • Talk to a counsellor. Perhaps a pastor or even a paid counsellor can help you walk through this time. It's always wise to get help.
  • Find a support group. Everyone needs this. Your friends and even your family may be well-meaning, but there's nothing on earth like talking to someone who understands.
  • Be honest with your family. Tell them you need help. If they can't supply it, perhaps they would be willing to help pay for it.
  • Look for community resources--respite care, day programs, special activities.
  • Talk to a friend. Even if they aren't in the same situation and can't totally understand, they cvan provide a listening ear.
  • Keep your sense of humour. It's a key ingredient to keeping your sanity.
  • What gives you a sense of purpose and fulfilment (outside of caring?) Spend some time each week doing that.
Remember--put your own oxygen mask on first!


1.https://www.nextavenue.org/caregiver-sicker-loved-one/

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Wednesday, 5 June 2019

Care Partner Wednesday--The Shocking Truth About Care Partner Trauma


Two flights of stairs stretched below me as I juggled my immense black suitcase, a purse and my lunch bag. So far I'd stuffed the suitcase in my car, drove to the station and hauled my bags on and off the train. But now the staircase loomed. Half my journey still awaited me, my shoulders ached and I wasn't sure if I or the suitcase would bump down the stairs next.

I'm notorious for trundling to work with heavy bags, but the day I packed the entire ingredients for Irish Stew for 50 into my oversized suitcase, I learned a valuable lesson. Streaming sweat and screaming muscles are the results of carrying a massive burden alone. The ensuing trauma is real and damaging.

"An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University 40 percent of Alzheimer's caregivers die from stress related disorders before the patient dies." 1
"What's the alternative? I need to care for my loved one."

You can. The key is to share your burden.

What Does the Trauma Look Like? 

Do you consistently feel overwhelmed,  angry, irritated or exhausted? Do you feel isolated by your care role, and have you lost interest in activities that used to excite you? Is sleep elusive and are your physical problems mounting?

You may be experiencing care partner stress.

Stress of any kind which comes from many sources and escalates soon becomes a trauma. What kind of symptoms should you look for?


  • Depression--everyone struggles with grey days, but when they string together into a continuous stormy sky, you need help
  • Continual sickness--Are you always coming down with something, fighting an infection or struggling with an illness?
  • Anxiety--is your "worrier" working overtime, so you never have peace?
  • Are you gaining or losing weight no matter what you do?
  • Stress puts you at higher risk for chronic diseases such as diabetes or heart disease.
  • Trouble focusing. Your thoughts are scattered and you have trouble completing a task because your mind is like a handful of marbles dropped on the floor. You sometimes worry you are developing dementia.
  • Excesses which were never a problem before--overeating, alcohol consumption, smoking etc. Looking for relief from stress in the wrong places.
  • Resentment


 What Is The Answer?

In taking an honest look at the problem, I've painted a bleak picture. If you suffer from several of these symptoms, even if they aren't continual, you need help.

The good news is found in community. You aren't alone. "Tune in" next week as we explore ways to share your burden.

1. https://www.nextavenue.org/caregiver-sicker-loved-one/

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Care Partner Wednesday--The Shocking Truth About Care Partner Trauma

Wednesday, 29 May 2019

Care Partner Wednesday--Warning: Care Partner Guilt Can Destroy You










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I grabbed the buzzing phone when I saw the words Credit Valley Hospital. The nurse explained my seriously ill husband rode in an ambulance heading to another hospital in the city which could better deal with his failing heart. My bus headed in the opposite direction and I realized I couldn’t visit him tonight. I would go home early, eat something other than a dry sandwich and sleep. Relief washed over me, immediately followed by crippling guilt. What kind of a wife was I?

Like the tiny worm buried deep within the apple, guilt can hide. On the surface, we cope with crushing stress and look like heroes without capes to those around us. Not until the smell of rotten apples permeates do we realize guilt has consumed us and rendered us useless.

Guilt speaks many languages.

The language of your loved one. You never come to see me. (You visited two days ago.)
The language of the doctor. You need to make sure she takes her medication on time. (How do you persuade her if she refuses?)
The language of yourself. Nothing I do is right or enough or(fill in the blank.)

Guilt speaks most harshly to the person listening.

Elaine K. Sanchez tells the poignant story of Madelyn, a care partner consumed with guilt on her wedding anniversary.

Guilt seldom produces a positive result.  
So what do you do with it?

Ask yourself the questions.
1.    Did I intentionally cause harm?
2.    Is the feeling self-imposed or is it being imposed by someone else?
3.    Is there anything I can do to change the situation?
4.    Is my guilt benefitting my care receiver?
5.    How is guilt serving me?

Just like the worm in the apple, guilt hides and completes its insidious work in secret. It may boil up in anger, sink into depression or compel you to hide in shame. But if that apple is cut open before the worm has a chance to destroy it, the worm dies. Exposure causes it to whither.


Look at those guilty feelings in the light of day. Do you have anything to apologize for? Do it immediately. Are my expectations of myself unrealistic? Are my perfectionist tendencies getting in the way of whats reasonable? 



Promise yourself you will be kinder to you today.


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Wednesday, 15 May 2019

Care Partner Wednesday--How to Accept Care From Elders in 3 Easy Steps


Jenny was in a bad way. Her body stiffened as a spasm overtook her. Her legs flailed straight out, unable to bend at the knee. Her hands clutched the arms of her wheelchair with white-knuckled strength. Eyes bugging out, whatever was happening to her body obviously terrified her.

With slow, measured steps, Alice approached her. Usually totally absorbed in herself and the world of her anxieties, Alice reached out and rubbed Jenny's arm. "It's okay, Jenny. It's going to be okay. Just relax." Alice stood and rubbed for several minutes until Jenny's board-stiff body slumped into the chair.

Caring reaches both ways. It goes from elder to elder, and from elder to care partner. Each time it's a precious gift, but like any gift, it must be recognized, acknowledged and received.

Many times, our role as care partner grows to such enormous proportions, it overtakes all other roles, and we miss the gift of reciprocal care. Our actions are all about care, our thoughts are anticipating the next need and our emotions are strained. I, personally, need to stop several times a day and recognize when a gift is offered to me.

Bonnie is often anxious and this manifests in calling out. It's disturbing to other residents and staff, and Bonnie isn't too popular among her peers in the neighbourhood. Often I spent time with her, trying to distract her and bring her to a calmer place. That's me giving care, but in the midst of these times, I've received as well. Bonnie loves clothes and jewelry, and will often remark on mine. Suddenly, we're not care partner and elder, but two women discussing fashion. I leave her room smiling and feeling good about how I look that day. It's at this point I need to pause and recognize the gift that Bonnie has given me.

For some care partners, thinking of their elder caring for them is difficult. This is understandable, isn't it? Care is what they do, sometimes with few breaks. Their entire focus is care, giving and planning the next move. The next meal, the next bath, the next trip to the doctor's office. It's a radical thought to be cared for by an elder.

But it's oh, so lovely! When one of my elders worries about my trip home on a stormy night and offers to share her bed with me, when I laugh with another, when we sit outside and talk about the life we see going by, I am enriched. These are the times I need to acknowledge, and let the elder know how they have blessed my life. "Thank you for spending this time with me. I had so much fun." As we mentioned last week, elders feel purpose when they know they have contributed.

Finally, it's important to receive. Imagine you go to a friend with a beautifully wrapped gift and present it to them, and they say, "You shouldn't have done that." and push it away. Imagine if they then start doing something for you? How would it make you feel? Incompetent? Unworthy? Useless? Keep your eyes open and your antenna poised,  looking for the gifts you receive from your elder.

You will find them everywhere.

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Care Partner Wednesday--When You Care For Me

Wednesday, 8 May 2019

Care Partner Wednesday--Finding A Sense of Purpose


Think of these scenarios:

George was a great husband and father. He took his boys to innumerable hockey practices and provided for his family. He and his wife went out dancing and the family enjoyed many vacations together. He was a great dad and husband. Now George is elderly. He describes the working of his mind as being "cloudy." He has dementia, is incontinent and spends most of his life in a wheelchair. His gravelly voice is difficult to understand. How do you help George find purpose?

Flo was a strong, independent woman all her life. She gave her life serving others, but on her terms. Now her body betrays her every day. She can no longer walk and lives in chronic pain. It galls her every time she has to ask for help, and this happens several times a day. She is sinking into depression and doesn't understand why God doesn't take her home. Where is the purpose for Flo?

In their marriage, Pat was the strong one. A woman who spent her life being in charge, she was a care partner for her husband for over a year as dementia changed the man she knew. Brave and capable, she faced the inevitable on the day when she had to move him to long-term care. She'd known this day was coming for several years, and she felt ready. What she wasn't ready for, though, was to find him totally settled and happy in his new room in a couple of weeks. He seemed to enjoy the freedom of being on his own and it shook everything she knew about their marriage. Pat no longer understood her role and floundered as she looked for purpose. How can we help Pat find her way?

Purpose involves helping your loved one find what makes them feel valued. 

As care partners, helping your loved one find their purpose might be the most important journey you take together.

Here's what purpose isn't:

1. Purpose isn't busy work. I remember a person who ran activities and felt that people with dementia would find purpose in folding towels. She brought them an armload and demonstrated how to fold them. When she came back later, she thanked them for the fine work they'd done and took the towels in another room. There she shook them out and returned with "more towels to fold." That isn't purpose.

2. Purpose isn't simply to pass the time. An activity which excites one resident may be just filling in the hours for another. "I'll go because I have nothing better to do." That's not purpose.

3. Purpose is not entertainment or even socializing. These are fun and enriching, but not purpose.

Purpose is both individual and elusive. It involves knowing the person well but also understanding that the activity which was important to them a few years ago may not make life purposeful now. We grow. We change.

Here are some statements which are useful in exploring purpose with an elder.

"I really enjoyed it when we______________. How did you feel about it?" (watch for body language.)

"I need to ask your opinion about______________."

"I learned so much from you when we talked about__________."

"Can we go for a walk together? I could really use some time with a friend today."

"Would you be able to help me with ____________?"

It may be that your elder finds their purpose on their own. I see it every day.

  • One lady at a table for four looks out for the others. She has aphasia and can't express herself well, but with gestures and a few words, she indicates that she's worried that one of her tablemates isn't eating. If she feels she needs help, she stands by her shoulder until someone notices there is a problem. She cares about her friend and looks out for her.
  • Another resident who raised a family and is comfortable in the kitchen bustles in and asks for a job. One day she washes all the teacups, another she sweeps the floor. 
  • A lady came to a flower arranging program. She didn't often leave her room, so this was huge. Another resident began to help her find her way, suggesting what flower to choose and where to put them. After a few minutes, they were both engrossed in the project.
  • An entertainer came to play some music, and a resident hosted the event, getting him the specific chair he wanted, some water, and bringing people to the event.
  • Two ladies sat beside each other at a tea party, clasping hands in companionable silence.
Elderhood isn't a time to lay on the bed and wait for the end. Each elder has something to offer,

A sense of purpose.

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Wednesday, 1 May 2019

Care Partner Wednesday--Have We Got Ageing Wrong?




She's poised on the high bar, her toes pointed, She moves her body gracefully and slowly unfolds to stand on the narrow piece of wood. Walking its length, she bends, grabs the bar and swings her body to the ground. Her white hair glistens as she lands.

Wait, what? That's right, this gymnast is 82 years old. We look on in stunned awe and applaud her efforts. It's the same with the 88-year-old track star racing toward her goal, her face a mass of concentration as she presses for the finish line. Or the man in his 90s who still runs marathons.

You’ve seen it before. A woman who graduates from university in her 80s. Someone who is still working as a nurse late in life. I live in a community where the mayor ran and won every election until she retired at 93. These are the elders we revere as shining examples. We shake our heads in wonder. They are amazing. How do they do it?


Dr. Bill Thomas, the founder of The Eden Alternative, poses an interesting question.

What if almost everything we believe about ageing is wrong?

As much as these elders deserve our respect, Dr. Thomas makes an interesting point.

“Older people have standing in American (or Canadian) society only to the extent that they can do the things that young people do. And what happens to them if they somehow can’t still do what young people do? They disappear. Or more accurately, they are disappeared.” (brackets mine)

From the day I began working in this industry, I’ve heard phrases similar to “Ageing isn’t for sissies.” The implication is that when you become a part of this exclusive club, you’d better be ready for a painful journey, where all the joy of life is gone and each day is worse than the one before. The phrase is usually said to me with a wry smile and a squaring of the shoulders that implies the speaker isn't a sissy, and is somehow struggling triumphantly through this difficult time in their lives.

So I ask with Dr. Thomas, do we have it all wrong?

Reflecting on my life, I can think of many seasons that were not for sissies. Frightening, difficult times when I wondered how I could make it until tomorrow. I can also recall times of joy and laughter, and I have incredible memories of triumphs and exciting experiences. That’s life. At no time do we sail forth on a crystal sea—at least, not for long. 

Dr. Thomas talks about the seasons of life, and suggests there is a fourth. We know childhood, adolescence and adulthood. He maintains the fourth season is elderhood. We need to grow out of adulthood into elderhood as we grow out of adolescence into adulthood. He says that when someone isn’t able to leave childhood and grow into adulthood, we say they are developmentally delayed. Yet as a society, we figuratively dig in our heals and resist in every way, growing into elderhood. 

“We’re told that ageing is the problem. Ageing isn’t the problem. It’s our obsession with youth—our excessive devotion to the virtues of youthful adulthood.”

I’m not willing to throw away my makeup or hair colour, but I hear what he’s saying. I cringe almost daily at the ageist jokes on Facebook, poking fun at ourselves as we grow older. For at least a generation, we’ve been barraged with the message that all the good things in life occur for the young, and we need to cling to youth with every ounce of strength we have.

Dr. Thomas says, “There is life beyond adulthood. It’s called elderhood. Every day, we wake up one day older. Ageing is good. We are all elders in the making. Our society needs elders.”


This is radical thinking. That time of life that we have dreaded and resisted with every fibre of our being is good? Elderhood is counted and joked about in terms of losses. Are their real gains in terms of wisdom and significant contribution?

I'm racing toward this phase of life with the energy of a freight train entering the station, and I confess to wanting to put on the brakes. It all comes down to purpose. We need to send these messages to our elders daily—verbally and through our actions:
“You are important.”
“You have something to give.”
“My relationship with you enriches me.”

Actually, is there anyone among us who wouldn’t blossom, hearing that kind of message?


Wednesday, 24 April 2019

Care Partner Wednesday--Sign Up for the Newsletter

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It's new, practical and full of ideas you can use as you navigate the tricky world of the care partner. Click the link above and sign up for my new monthly newsletter.

Each newsletter will contain links to three blog posts, five quick tips for some aspect of your care partner journey, and a recipe. Something healthy, quick and easy that a busy care partner can put together in no time.

Here we go:
                 5 Reasons to Sign Up for the 5 Tips Newsletter

1. Valuable information for care partners from someone who has "learned in the trenches," probably made every mistake possible, and grown.

2. A wide variety of topics covering every aspect of eldercare.

3. A sound philosophy. Care should be person-centred, respectful, reciprocal and creative. Elders need purpose and given the opportunity to contribute.

4. Practical advice that can be applied easily.

5. A sense of humour maintained in every situation. Being a care partner is hard some days and impossible others. Uphold your sanity through the ability to see the funny side of the ridiculous. Learn to not take yourself or today too seriously.



The first volume will come out the end of this week. Make sure you sign up to receive the newsletter monthly.  Do you know someone who is walking the care partner journey? Tell them about it.

Here's the link again, because you don't want to miss this!

https://mailchi.mp/ac4036fba65b/f7avdbea9h

 Care Partner Wednesday--Sign Up For the Newsletter

Wednesday, 17 April 2019

Care Partner Wednesday--"But I Don't Drink Water!"


"She's dehydrated."
The hospital nurse's tone spoke volumes and her message was clear. The resident we sent to the hospital was suffering from dehydration on our watch, so obviously we gave terrible care. The judgement was in her voice, the look on her face and the stance of her body.

I wanted to punch her. Hey, I'm human, too.

She didn't see the multiple times a day we encouraged fluids. The various attempts to hydrate.

Dehydration among the elderly is a huge problem, and it causes multiple problems in the body.
Why does it happen?
  • Because of problems with incontinence, elders are reluctant to drink enough in case they can't make it to the bathroom in time. This is especially true later in the day.
  • Many people suffering from heart disease require diuretics to control excess fluid retention. This results in urinating more, which can result in incontinence. See above.
  • Some elders don't experience thirst, even in warm weather, like they did when they were younger.
  • Memory issues can make it difficult to remember to drink.
  • Illnesses such as vomiting or diarrhea can cause dehydration quickly if a person is borderline, to begin with. Many elders live verging on dehydration.
  • Some elders in the latter stage of several diseases have swallowing difficulties, which makes drinking difficult.
How do you know if your elder is dehydrated or verging on this state? Blood work will indicate immediately if someone is dehydrated, but certain signs are signposts to indicate a problem.

Signs of dehydration
  • dark coloured urine is a sure indicator. If urine is concentrated, there isn't enough fluid going in.
  • infrequent urination
  • dizziness or weakness
  • low blood pressure
  • sunken eyes, or skin, when pinched, that holds the shape of the pinch rather than plumping back
  • increased confusion
  • increased heart rate
Of course, the difficulty is that most of these symptoms could be indicators of any number of problems. But if you suspect, push fluids and see if the symptom disappears.

What problems does it cause?
  • constipation
  • urinary tract infections
  • dizziness and weakness can lead to falls
  • kidney stones
  • increased confusion in people with dementia
How much is enough?
Seven cups of water a day is suggested for elders.

How do I do that?
It sounds daunting, doesn't it? Here are a few tips:
  • It doesn't have to just be water. Some people detest water and refuse to drink it. Any fluid that is enjoyed (tea, coffee, juice, milk etc. counts toward your total fluid intake. Alcohol has a diuretic effect and should only be consumed on occasion, and soda should be limited (although this generation generally doesn't enjoy soda.)
  • Try adding flavouring to water, which can be bought at the grocery store in multiple flavours. Or make "fruity water" as pictured above with cucumber, mint, strawberries etc. It's remarkably flavourful and refreshing.
  • Any fluid counts. Soup, pudding, ice cream.
  • Try offering fluids of choice on a regular basis, and toileting regularly if this is a concern.
  • Go outside. There's nothing like fresh air and sunshine to work up a thirst. 
  • Set the example. Have a drink together several times a day.
I have no scientific research to back this, just anecdotal. When I get used to being hydrated, I get thirsty more frequently. It feels as if my body enjoys the feeling of being well hydrated and sends out signals more quickly, telling me to drink. 

As warmer weather approaches, keep hydration always on your radar.

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Care Partner Wednesday--"But I Don't Drink Water!"

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Wednesday, 10 April 2019

Care Partner Wednesday--"But I Love Chocolate Bars!"


When George came to us, he'd spent several months in the hospital. A tall man, he looked severely undernourished. "He's a small eater," his wife said. That's when I discovered his diet in the hospital consisted of sandwiches his family brought in and his favourite chocolate bar. I opened the drawer of his nightstand to look for something for him, and found it full of chocolate bars!

Nutrition and the elderly is a minefield of choices and difficult decisions. Meals should be a pleasant experience and not a tug-of-war. In the end, it comes down to choice, and your elder has the right to make that choice.

Let's look at a place to start and a question to ask.

In looking at nutrition, the place to start is to identify any gaping deficits. The best way to do this is to have your doctor perform a comprehensive blood workup. Simple blood work can easily identify which areas need attention. This should always include a fasting blood sugar to identify diabetes, B12 levels, and tests to check liver and kidney function. If a deficiency is discovered, it may be necessary to take a supplement to address it, but you can also look at nutritional answers.

Next is the question: What is your goal? Weight loss? Weight gain? Diabetes control? Improved nutrition? Bone health? There are so many reasons to look at nutrition, and you may be tempted to say, "All of the above." The truth is, you need to pick your battles. Choose one primary goal, look at a few simple changes that might be made and strategise how to make them.

Let's look at weight loss. Many elders have a decreased appetite. Perhaps they are bound to bed or a wheelchair and aren't moving enough to feel hungry. It's possible some of the medications they take suppress their appetite,  and taste buds don't work as well as they used to. Another factor is texture. If they have difficulty swallowing, they may need their food minced or pureed. It may be exactly the same food, but I refer to this as "mush," and there's no way to make it as appetizing. All these factors combined can lead to significant and even dangerous weight loss.

How do you promote weight gain as a goal?


  • Even people bound by wheelchairs benefit from fresh air and a change of scenery. Whenever possible, take them outside. Even if they aren't exercising, they may feel more hungry after a dose of fresh air and sunshine. If you are feeling adventurous, have the next meal outside.
  • Speak to your doctor about the problem, and ask if any of their medications could be part of the problem. Ask for his/her suggestions.
  • What do they like? Flexibility is important. Maybe you made a lovely chicken dish, but what they really want is a fresh omelette or a grilled cheese sandwich. What are they more likely to eat? Be willing to change the plan at the last minute.
  • Be creative. One lady in my neighbourhood was extremely thin and losing weight. She loved her soup, but it was almost a clear broth, and she'd fill up on just a few calories and not be able to eat the protein portion of the meal. We started adding pureed food to her soup to make a thick broth. She still enjoyed her soup but got the benefit of the whole meal. Lots of healthy ingredients can be hidden in porridge, soup and spaghetti sauce. Just saying.
  • Sometimes the doctor will order a supplement. Make sure this is given after the meal, so your elder gets the benefit of real food first.
  • The social aspect of a meal is paramount. People eat more and better when they participate in an interesting and fun conversation. At work, I chat with those I am assisting, even if they can't talk back. It improves digestion.
  • Don't focus on the goal. For the most part, your elder doesn't need to be aware that there is a goal. Keep meals and snack times fun and flexible.
  • Keep it flavourful. Lemon, fresh herbs, a hint of garlic--use whatever you think you'll get away with to make your meals taste appealing.
All of these principals can be adapted to any nutritional problem. And don't forget to throw in an occasional chocolate bar!

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Wednesday, 3 April 2019

Care Partner Wednesday--"But I Hate Broccoli."


Do you remember trying to encourage your toddlers to eat broccoli? I dared my son, "I bet you can't eat a whole tree." He'd stuff it in his mouth and munch away, and I'd pretend to faint with the wonder of it all. When he got older that ploy didn't work, and I tried to spice it up with various sauces, or ground it and hide the evidence in spaghetti sauce. At one point during his teenage years, the only vegetable he ate was the "sweet 100" cherry tomatoes that grew like grapes in the back yard. As a diehard health nut, I worried about stunted growth and early death. I'm happy to report that in his twenties his dietary bent turned toward the vegetable aisle, and now he cooks and eats wonderful meals.

Elders have challenges when it comes to nutrition. This week we'll examine some of the difficulties, and the following week we will look for solutions.

Micronutrient deficiency is rampant among elders. Why? So many reasons.

  • Many suffer from some form of a disease, which depletes their bodies of nutrients or makes it difficult for them to get proper nutrition from their food.
  • The treatment for some diseases (such as various forms of cancer) can leave the body drained of certain nutrients.
  • Some diseases such as Parkinson's disease or arthritis can make the handling of utensils difficult.
  • Medications can lead to certain deficiencies or loss of appetite. Some side effects, such as nausea or constipation discourage eating.
  • Common pain relievers cause constipation, leading to bloating and uncomfortable bowel movements. Someone who is constipated is seldom hungry.
  • Elders living alone often need a ride to a grocery store. 
  • Finances may be a problem, causing them to shun more expensive fresh foods.
  • Missing teeth or ill-fitting dentures can make eating difficult and painful.
  • Some elders experience swallowing difficulties and need their food minced or pureed.
  • Cognitive impairment can lead to forgetting meals, or not remembering how to prepare them.
  • Depression, common among the elderly, can lead to a lack of appetite.
  • Stubbornness. Stubbornness?? Yes, Many have eaten a certain way all their lives and aren't about to change now. Often this "certain way" includes unhealthy habits that overindulge in breads and sugars and don't include enough fresh foods. 
  • Elders are notoriously dehydrated. Without enough water, every system in the body has difficulty functioning correctly.
A discouraging list! With all this, is there a well-nourished, hydrated elder on the planet?

Next week we'll look at nutrition basics and how to make them possible and even desirable.
Stay tuned!

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Care Partner Wednesday--"But I Hate Broccoli."

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Wednesday, 20 March 2019

Care Partner Wednesday--Doing Death


I'm doing death better than I used to.

When people are dying, it's seldom pretty. Hollywood has glamourized it to something it's not. For a newbie (at the time) like me, it was scary and I avoided it. I wasn't in a position where I was supporting families at that time, and I made myself scarce around the dying person's room. Some people like to sit with dying people and hold their hands. That isn't me.

In my first year, a resident passed away and the funeral home was in the room when the nurse called me into the room. Quaking inwardly, I wondered what she could want. I went in to find that the resident had already been put in the body bag, but the nurse realized she was still wearing her rings. The family wanted those rings, so she called me in to witness her taking the rings off and putting them in an envelope. She unzipped the bag, pulled out her lifeless arm and removed the rings. She was a seasoned nurse and this was no big deal. I was shaking. This was my first dead body. A few days earlier I was holding that hand in a music program, and now it was protruding from a body bag. The good news is, my lunch stayed down. Just barely.

Since then, there have been many residents and many deaths. For a long time after that, I avoided going into the room of a dying person, and I kept my phobia to myself. I served on the Palliative Care committee, and no one knew I was terrified by death. It would have been a shameful admission.

Two deaths started to change me. Surprisingly, they occurred fairly close to each other, and I have a close relationship with each of them. The first was my husband. I was in the room when they slowly shut down the machines, one by one, that were keeping him alive. Although the ICU was crowded with our family, a strange silence hovered as the last machine stopped. The medical staff stepped back and allowed us a few minutes. I touched his hand for the last time and said good-bye. Somehow, it wasn't scary. I'd done life with this man for the last 30 years, and now that part of the journey was over. What I felt was peace. His tortured body was at rest and he was with Jesus. The frightened, creepy feelings I usually experienced were totally absent.

Several months later, a resident who I loved like a mother, a mentor and a friend was dying. I stood outside her door and took several deep breaths before entering. She was still conscious, and I knew in my heart this would be our last visit. I sat and stroked her beautiful silver hair on the pillow. We talked of the day we first met in the store, and how we'd shared a hot cross bun recipe. I told her I loved when she laughed and then snorted and then laughed at snorting. I told her I loved her. The time passed, and I knew I needed to leave. "I need to go now, but I'll see you again." Then, because our relationship was always brutally honest, I stroked her hair and whispered, "But if you go first, I'll see you in heaven." She turned her lovely blue eyes to me and whispered, "yes."

Since then, I've slowly realized a few things.

Most of the time, the dying person is well looked after. Our care partners are excellent at keeping them comfortable, and the doctors and nurses ensure pain is kept at bay. There are times I've needed to ask for pain medication or other interventions, but most often, their journey is a gentle slide into eternity. They aren't my focus. The family are usually the ones who need care at that point. A basket of things they might need, a cup of tea, a meal, a blanket, a hug. My mission is to support them as they walk this journey with their loved one.

I used to think sitting at the bedside of a loved one and watching them die was horrible and gut-wrenching. It can be, but often it isn't. One beautiful family had both laughter and tears as they spent an afternoon with their dying loved one. He wasn't aware they were there, but they told stories of his life and laughed as he left. What a beautiful way to leave.

I also discovered that not being there is worse. I'm supporting a family at the moment who can't be there. They live several provinces away and aren't able to come. I send daily emails and our chaplain phoned them after they visited. Their love strains across the miles, longing to hold her hand one last time, and my job is to find ways to reach out to them each day until she passes.

I'm doing death better, I think because I've realized the emotional tearing can be difficult, but we can all hold hands and help each other as we cross that final road.

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Care Partner Wednesday--Doing Death

Wednesday, 13 March 2019

Care Partner Wednesday--5 Tips to Retain Your Sanity


"Who's looking after me tonight?"
"Amelia"
"I don't know Amelia. Where's Tracy?" (her regular care partner)
"Tracy's on vacation, but Amelia has looked after you many times. She knows what to do."
"But I don't know what to do."
"You don't have to know. Amelia will look after you. She knows what to do."
"Is it a shower night?"
"Yes, it's Tuesday. But Amelia knows what to do to give you a shower."
"But I don't know what to do."
"You don't need to know. Amelia will look after you."
"I'm so afraid."
"We're all here to look after you. Everything will be fine."
"My hands are shaking."
"Your hands shake all the time. That's nothing new."
"I'm afraid. Don't leave."
"Amelia will look after you."
" I don't know Amelia."

This is an excerpt of an actual conversation. I say "excerpt" because the actual conversation continued for about 45 minutes, and only ended because I left for the day. I have this discussion in various forms every night. The only difference is, showers are only twice a week.

Do you ever have conversations in your head when you're frustrated? Do you want to walk away from the room, throw up your arms in dismay or plug your ears and sing, "La,la,la,la,la." Do you ever think, "Make it stop!"?

The journey of the care partner can be difficult. Topping the list of challenges is conversations that go nowhere, have no resolution and never stop. They require incredible patience and some days, it just can't be found.

How do you handle it when impatient words and sharp retorts are running through your head, threatening to find their way out your mouth? When you can't listen to the same circular debate one more time but you know you have to.

Here are some tips:

1. Do everything you can to get enough sleep. You can't cope with anything when you are overtired. If you are being wakened in the night or having trouble sleeping because you are consumed with worry about a wanderer, you may need to hire help. Even a few good nights' sleep a week can help.

2. Make sure you get breaks. Remember those friends and family members who said, "Let me know if I can help."? Now's the time to give them a call. Have them come for a visit during the times when the litany is the worst, and you leave the building.

3. Try distraction. It doesn't always work, but occasionally the right stimulus will derail the anxiety train. A walk, looking at pictures together, ice cream. I'm not above saying, "Would you like an ice cream sundae?" Hey, desperate measures. Other distractions that sometimes work are looking through familiar photo albums, snuggling with animals and playing with small children.

4. Don't check your sense of humour at the door. Sometimes a sense of humour is the only thing that gets you through. When I start the same conversation for the 12th time, I tend to get the giggles. It's important to remain respectful so you may need to hide in the bathroom until the hilarity passes.

5. Tip #5 is yours. What do you do to maintain sanity during cyclical conversations with someone with dementia and anxiety?  How do you cope? Reply in the comments and share your best wisdom.


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Cre Partner Wednesday--5 Tips to Retain Your Sanity

Wednesday, 27 February 2019

Care Partner Wednesday--Don't Let our Elders Disappear





I snuggled in my spot on the couch watching Midsomer Murders on Netflix. This episode involved a suspicious death at a retirement home. The main character's daughter came to visit an elderly aunt, but yielded to the charm of another resident--a gentleman who might have presented as quite the rapscallion in his youth. As she leaves, they chat, and he becomes pensive. "You know the worst part of ageing?" he says to her.

He stares into the distance as he answers his own question. "You disappear."

I turned off the program, as my interest in the murder vanished. This man's profound words touched a nerve, and I needed to think about it.

Invisible.

Having worked for so many years in an environment where seniors are valued, the comment jarred me. Yet it contained truth.

What does the world value? The easiest way to answer is to look at advertisements. What is sold and what do we buy?  Looks, position, power. Smart people at the cutting edge of whatever new development happens. Strength, fitness, fame. We value people at the top of their game.

Does that describe many elderly people you know?

The people I work with have wrinkles, sagging skin and marks on their faces which can't be erased by any cream bought at the drug store. They retired, and although many of them still live vital and interesting lives, society no longer values their contribution. For the most part, they wield little power in the traditional sense of the word. They don't live at the cutting edge or the top of anything. Most are frail, and fitness is measured in how much mobility they can maintain. Many of them made huge contributions to art, literature or business. They changed their world. Our world doesn't feel all that interested.

If we let them, they too will disappear, fading into the pages of history.

DON'T LET THAT HAPPEN.

In my job, I discover these amazing, interesting people. Which passion did they pursue that became a career? Did they do research in children's diseases, or did they raise incredible children? Did they write books, or travel and see awesome sights? Did they fight in wars, or live through indescribable horrors? Did they teach in a one-room schoolhouse or learn in one? My opportunity lies in asking these questions and uncovering the people inside--not just what they did, but who those experiences turned them into. My privilege and responsibility.

Yours, too.

In our elderly, we have depths of wisdom which we need. We need to know what they learned from living through a war, a depression, in a difficult and frightening world. What did they learn, and what can they teach me? Or you? They experienced all kinds of relationships. They made mistakes and learned from them. They don't hold perfection, but they hold wisdom--a commodity we can't let slip away.

What would happen if we did? Imagine if we lived our lives in the moment, chasing after the things that seem important--the fame, the money, the good looks etc.which I've already mentioned. Or maybe we possess more depth, but we make our way forward with our own lives, and never ask the questions that matter to our elderly. We look after them and we love them, but we let them slip away without ever getting to know them. We don't value what is valuable until it is gone.

What would happen?

We would lose the opportunity to be enriched. The depth of experiences, the funny stories, the lives well lived, would slip away. Instead of the cream, only the skim milk of our lives would remain.

We would fade, wash out, disappear.

Invisible.

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Care Partner Wednesday--Don't Let Our Elders Disappear