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


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,

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!



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.


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.


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.

Care Partner Wednesday--When You Care For Me