Wednesday, 31 December 2014

Carepartner Wednesday--The Carepartner's Alphabet--C



C is for communication. Communication is complicated.

Communication with the person with dementia. Communication with other professionals involved in care: nurses, doctors and other specialists and professional care partners. Communication with family.
Each of these requires a special set of skills, and probably, their own blog.

For today, we're going to look at communication with the person with dementia, because if you don't figure out how to communicate effectively with anyone else, it's important to get this one right. For both of you.

I've said it so often, but it applies again. "If you've met one person with dementia, you've met one person with dementia." Tom Kitwood 1

There are many different kinds of dementias, and although there are similarities, they all present differently. Then there is the personality of the person with dementia. Although likes and dislikes and abilities change, the person is still there, and who they are affects their communication. The progression of the disease, and even the time of day can change things. A secondary infection or illness (such as a urinary tract infection) can totally change a person until it is recognised and treated.

Given all that, how can we possibly get it right?

The good news is, it is possible. Even most of the time, with a little knowledge and experience.
Here are a few tips:

1) The basis of all things is knowledge.

 a) Start with the kind of dementia the person has, and read as much as you can about communicating with a person with these challenges. What makes communication difficult for them? What is going on in their brains and their bodies that makes messages not get through? This is helpful, but only a start.

b) What other physical problems are there which affect communication? Do they have difficulty hearing? (Do you ever notice if you miss one key word in a sentence, none of it makes sense? If that happens to me, sometimes I try to keep listening and figure out what is being said rather than admit I didn't hear. If I haven't figured it out after a few sentences, I am totally lost in the conversation. Now, try that with dementia.)

 Are they unable to see? We take for granted physical cues which we can see, and how much they add to our communication. What if the person has difficulty with both hearing and seeing? And dementia. Get the picture? It helps to realise what you are dealing with and compensate the best you can.

c) You know this person. There may be some days where you feel you don't, because they have changed so much, but you know many things about them. They love classical music. Hate gardening. Light up when children are in the room. Have a soft heart. Use what you know about them to reach through the other difficulties to their heart. Once you have reached the heart, communication is easy and incredibly satisfying.

2) Body language is key.

You know those social masks we wear so no one knows how we're really feeling? Who hasn't had a fight and then gone to church and looked like nothing is wrong? We all do it, but with people with dementia, the masks slip away early in the disease. They pick up on things quickly, and will often react with nervousness or anxiety. So watch your body language.

With many people, an effusive approach works well. (I am not an effusive person, so I have to work at this.) A big smile, an enthusiastic greeting often brings a responding smile and greeting. Often, but not always. If a person is angry, I immediately tone it down, and become concerned. (This is not put on. I am concerned. My friend is hurting.) I will encourage them to sit with me, and listen to what is bothering them. Sometimes, I have no idea what they are talking about, but I will make sympathetic noises ("That must have bothered you. What did you do about it?") If it seems appropriate, I may touch the person's arm. Sometimes I sense they aren 't open to touch. I don't always get it right.

Body language, even for a person with sight difficulties, is incredibly important. Many people have some sight, and are able to use other senses in combination to pick up the message. You want to communicate: you are a special person to me, and I am interested in what you are saying. If this is in your heart, body language will follow.

3) There are times to back off. If a person is angry and getting angrier no matter what you try, or even sleepy or interested in something else, back off. Give them some time. Often 15 minutes will change the climate entirely.

4) Food helps. Okay, this seems lame, but how often do you serve tea and cookies or coffee and donuts or whatever to someone who comes to visit. It's what we do and it doesn't change. Do you know their favourite treat? (You should.) Have a piece or two at the ready if things get difficult. Nothing works every time, but almost--.

5) Be flexible. Have no agenda, and no expectations. Ideas and possibilities are great, and can be stashed like the chocolate or homemade cookies you brought. Suggest and see what happens. The only agenda is to have a good visit together, and to communicate. How that happens may be different every time.

If it doesn't happen, don't get discouraged, or feel like it was a waste.

It's never a waste.

Never.




Wednesday, 17 December 2014

Carepartner Wednesday--The Carepartner's Alphabet--B


B is for Boundaries and boundaries are hard.

Jody receives multiple phone calls in the night from her mother, who is living in a retirement home. Mom has an anxiety disorder and although Jody knows she is getting excellent care that extends to her emotional needs as well as the physical, the calls continue. Mom is worried about various aspects of her care, even though the staff looks after all that. She calls again and again, sometimes sounding strained, sometimes crying. Guilt is Jody's constant companion, but so is exhaustion. What should she do?

Dolores was leaving the husband for whom she cared for years, in the hands of others for the first time. He moved into a care home because of his worsening condition, but Dolores was having trouble letting go. She put the move off for months, and then kept moving back the day they would arrive. Finally, he was having lunch with the other residents (and without her) and she asked, "Can I peek in on him?"

Boundaries are difficult because they involve love and guilt and uncomfortable decisions. The carepartner is seldom sure if the decision they are making is the right one, and sometimes the person they care for assures them it is not. Even people with dementia (sometimes especially people with dementia) are adept at manipulation.

So how do you set boundaries?

Here are a few suggestions. This is by no means an exhaustive list.

1) Evaluate. What is being asked? Why is it being asked? Is there a reason behind the request that has nothing to do with the actual request? It's helpful to look at what is really going on. An example is someone who is asking for your time, when what they are really wanting to know is their purpose and value. Sometimes, when assured that they are loved and important in your life, the demands are less. Sometimes.

2) Beware of button pushing. In our family of two girls and one boy, my son could almost effortlessly push his sister's buttons. He was the youngest, but he knew the exact words and actions to drive them nuts. (What makes me chuckles is that it still works!) Just as siblings or our children can find our soft spots, so can those we care for. When Jody was away for two weeks (and couldn't be phoned) her mom was content and seldom anxious.

3) You aren't the only solution. Even though you may be convinced that nothing will be done correctly unless you do it, that is seldom the case. "As caregivers, it's often hard to shake the idea that we're responsible for every aspect of our loved one's care," says Pat Samples, of Brooklyn, Minnesota, author of Daily Comforts for Caregivers. "It's easy to take on more and more responsibilities and believe that you're the only one who can properly care for your loved one and that no one else can do it as well as you do."1 Find people you can trust to share the load--then share it!

4) Get support. It might be helpful to talk to a professional about your feelings and the struggles with boundaries. But often what you need is a good friend who can listen and give you permission to do what you know you should. I have been the "permission person" for many family members. I love to see the freedom and de-stressing which comes when carepartners let go. Often it takes the relationship to a healthier level.

Jody learned to trust the excellent nurse who made her mother Ovaltine and sat and chatted with her to reduce her anxiety. After a special signal was developed for emergencies, she turned off her phone and got a good night's sleep. So did her mom. Dolores went to lunch with her friend, and her husband chatted with the man beside him. Boundaries make it possible for both members of the caregiving relationship to grow.

Now, go build that fence. Start small, but start.


Monday, 15 December 2014

The Small Miracle of a Good Marriage--It's all about the Toilet Paper


"Who would pay extra just for something to wipe your bum?"

We were walking the aisled of the grocery story for a weekly shopping trip. When we were first married almost three years ago, I was charmed when my new husband would come shopping with me. How sweet. He even carried in the groceries and helped put them away.

I quickly learned shopping trips with him along cost a lot more. Items I would never buy, mysteriously appeared in the cart when I left it to search for my favourite brand of yogurt. My issue wasn't unfamiliar products, but generally unhealthy ones. We began to play a same of "sneak." Sneak it in the cart (him) and sneak it back on the shelf (me.) Sometimes there would be good natured negotiations in the aisle. Shopping definitely took longer. In spite of everything, it was still fun to have him along.

He doesn't come every time these days (although he still carries in the groceries and helps put them away if he's home) but the comment about the toilet paper was expressed on a recent trip. I was comparing prices of dish detergent, so not entirely concentrating, but a little voice in my head said, "I would." The voice stayed in my head.

Through the struggling years when Bill and I were bringing up children and trying to get beyond the poverty line, we made many concessions. Not much meat (no steak or roasts, lots of hamburger, which was .50 a pound) no paper towels, only one three-litre package of milk for two weeks, and cheap toilet paper. We even went to one-ply for a while, but decided cheap two-ply was the better deal. I hated it. It's funny the little things which spell luxury, but for me, it was the toilet paper. It was nice to be able to have an occasional steak, but the day we could buy soft toilet paper, I felt rich.

So here we were many years down the road, and my new husband, who knew none of the background, was buying cheap toilet paper. And I said nothing. I blame it on my distraction with the rest of the groceries, but the deep-down truth was I didn't want conflict. It wasn't a big deal to him, and he wouldn't have cared, but I kept quiet, and we went home with 24 rolls of really crappy (pardon the terrible pun) toilet paper.

Here's what I learned. Crappy toilet paper lasts a long time. Months. And is annoying every time it is used.

In every marriage, there is the "what matters" list. This may change over the years. When I was married at 23, my "what matters" list was much longer than when I was married at 57. I learned flexibility over the years, and the valuable lesson of priorities. But I discovered that good toilet paper still mattered. After weeks and weeks and weeks (would this stuff never run out?) I finally had the "toilet paper" discussion, explaining why I would like to pay more for something used to, well, you know. He laughed and said he missed the better toilet paper we used to buy, too. Not a big deal.

When we were finally down to a few rolls, we celebrated by buying the softest, most luxurious brand available. I was tempted to throw out the last roll of the other stuff, but my Scottish soul wouldn't let me. Neither would my Scottish husband.

One of the secrets to a good marriage is the know each others "what matters" list. Not opening his mail, even junk mail, matters to my husband. To his credit, he told me that from the beginning, so it's never been an issue. An important way to express love to each other is to share what matters on a regular basis, and be flexible about what doesn't. My "what matters" list is shorter than it used to be, as I have matured and learned to be flexible.

Sometimes "what matters" requires compromise on both our parts. I love to cook dinner for him and sit down to a meal together. His job means his hours are erratic. Often he gets home late, and he's already eaten. I've learned to live with that. However, he used to often have lunch late, so that even when he was home, he wasn't hungry for dinner. He's learned not to do that if possible. It matters to me.

Communication and flexibility are the building blocks to a strong marriage.

And really good toilet paper.


Tuesday, 9 December 2014

Carepartner Wednesday--The Carepartner's Alphabet--A


A is for Anxiety.

If we are being real here (and we are) there is a lot of anxiety involved in having someone in your family with dementia. 

Anxiety about the future, long term and immediate. Am I handling this right? Will I make the right decision at the right time? There are certain decisions regarding care where timing is everything and it's so tempting to put them off, rather than decide too early. What will be then end of this? Will I be able to be the person they need throughout the journey?

Anxiety about treatment. My doctor said this, but I read the opposite. Who is right?

Anxiety about today. It's only 10:00 a.m. and my patience is slipping. How can I get through the rest of the day? I'm so weary...

Anxiety about yesterday.  I feel so guilty about how I handled that situation yesterday. I know they don't remember, but I do, and the guilt is eating away at me.

Anxiety is a reality, and it doesn't help to say "Don't worry." Right.

Here are some things that might help.

Read. You need to be informed. Learn what form of dementia the person you love has. What are the characteristics? What is happening in their brains and their bodies (as much as is known)? Of course, not all sources are reliable, but anything from the Alzheimer Society, Dr. Allen Power and Dr. Richard Thomas is a good start.

Listen to those who are also carepartners. It's often the case that none of your peers or friends are going through this, and it helps to have someone to talk with who is experiencing similar situations.

Remember: "If you've met one person with dementia, you've met one person with dementia." Tom Kitwood. Everything you read and hear is not about the person you love. They have their own personality, and that doesn't go away with dementia. It may alter in some ways, and you may need to get to know them differently, but they are still the same person. They are still a person. Not a problem, not a disease but a person.

Get help. Find a support group, or talk to someone you trust--a minister, a priest, a friend, a counsellor. They may not have specific experience with dementia, but they can probably help you.

Look after you. I know, I harp about this all the time, but you're no good to the other person if you get sick or burn out.

A is also for:

Affection!

Attachment!

Applause!

and...Apple pie enjoyed warm with ice cream. Together.


Thursday, 27 November 2014

The Small Miracle of A World Changer



                 This incredible lady announced her retirement today.


“Do the best you can until you know better. Then when you know better, do better.” Maya Angelo

I began my career at Christie Gardens because of Grace Sweatman.

For the previous 15 years, I ran a daycare in my home and although the two career paths are diametrically opposite, she saw life experiences and gifts in me that could be valuable at Christie Gardens. I had no experience or education in this field, but she took a chance with me.

            I have now worked here almost 16 years, and the change has been dramatic for me. As an organization, Christie Gardens functioned like many companies and all long term cares, with hierarchical organizational chart. When change occurred, often those of us farther down didn’t hear about them until several days after they were implemented, or when we did something wrong because we didn’t know there was a change. There was no participation in decisions. Personally, I felt invisible sometimes. I always gave my best to my job, and I loved it. However, there was little recognition, and I wondered if anyone knew what I did in a day.

           Now, I have the incredible privilege of being an Advocate in one of the neighbourhoods. My primary responsibility is to support the care partners (PSWs) and be a servant-leader among them. Together, we work as a team to serve the residents and their families. We are a community. I meet with my supervisor weekly, and my ideas are considered and often acted upon. It has changed me and I am growing a new confidence as I joyfully share my gifts.

          I have seen changes in the care partners. They are learning new ways to relate to residents and each other. Instead of caring only for those who are assigned to them, they work as a team and help each other. They laugh. Sometimes, when a resident passes away, they cry. We celebrate together the lives that were among us.

          Most days, we have what we call “huddles” when morning and afternoon staff meet to learn, share and have input into decisions in our neighbourhood. It is during huddles that we learn to know and appreciate each other as people. At one such time, a 30 year employee cried when she realised one of her residents passed away. This kind of vulnerability was new to her, and we treated it as a gift.

          There is such a feeling of team. Instead of being unapproachable, the nurses confer with care partners and advocates and together we find the best ways to serve the residents. Residents are part of the team, making important decisions about all aspects of their lives. The men in the maintenance department stop into resident’s rooms to chat and the concierge meets another resident for coffee in the cafĂ©.

          We continue to learn and grow every day. We know better, and we do better, but tomorrow is another day and we may know better yet.

          Because of the vision of Grace Sweatman, we have the freedom, and in fact the mandate to do just that. “Together we lead, serve and change our world.” Grace Sweatman is a world-changer, and her influence has changed my world and released me to do the same at Christie Gardens.


Thursday, 13 November 2014

Carepartner Wednesdays--When kindness isn't enough.

                                                                   
                                         Alzheimer Request

Don't ask me to remember,
Don't try to make me understand.
Let me rest and know you're with me,
Kiss my cheek and hold my hand.

I'm confused beyond your concept,
I'm sad and sick and lost.
All I know is that I need you,
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse of cry.
I can't help the way I'm acting,
I can't be different though I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me til my life is gone.

Found taped to an Alzheimer patient's door in a hospital ward. 1

I can imagine the pain that led to the writing of this and taping it on the door. It was probably done by a family member who's heart was breaking as they saw the person they loved become someone they didn't know. Perhaps in the course of the disease, they had the reactions they described. Maybe they scolded or cursed, and quite likely, they cried. Or perhaps they saw a caregiver give treatment that was less than compassionate and their reaction was to pen these words and put them on the door.

My mother had Alzheimer's. I have worked for almost 16 years among that population and also worked with and supported their families. I get it.

But there's parts of that poem that set my teeth on edge.

The poem is written with the kindest of intentions. But there are times when kindness isn't enough. We need to go so much further.

The words "let me rest" are appropriate at times, as they are for all of us. When someone with dementia gets tired, they are less able to cope with the challenges in their lives. They can become more (weepy, angry, depressed, anxious--you name it.) At those times, yes, "let me rest." However, there are other times. 

I enjoy so many activities. Read the newspaper with me (did you know I still have opinions? Lots of them? That I'm interested in life beyond these walls?) Exercise with me. (It's been important to me all my life, and if you make it fun, we can have a great time.) Sing with me. It never fails to bring a smile to my face. Take me outside. I love to fill my lungs with fresh air. Tell me about your life. I am interested!

A few weeks ago, we had a gala at Christie Gardens, and one of the nurses looked lovely in a long, flowing gown with spaghetti straps. She came early so that she could share with the residents, and they enjoyed every moment of it. They exclaimed over her high heels, gave her advice and oohed and ahhed. I've found most women of any age or cognitive ability love clothes.

Then there's children. And pets. The list goes on.

"I'm sad and sick and lost." 
There are times when I am sad. Sometimes the confusion I feel, which leads to frustration and even anger, can depress me and make me sad. Sometimes I am sick. There are times I can't find my way back to my room or to the dining room and I get lost. BUT DON'T LOOK AT ME AS SAD AND SICK AND LOST.! Don't brand me like that, or you will never look beyond to the person who is still inside.

"Just remember that I need you, that the best of me is gone."
NOOOOOOO! I do need you, but what I need from you is this:

Dr. Richard Thomas, founder of the Eden Alternative, and Dr. Allan Power, author of Dementia Beyond Drugs, have an illustration that is powerful.

Think of me as boarding a train. You are standing on the platform, waving to me. As the train pulls out, I appear to get smaller, and finally disappear. You know what? I didn't disappear. I am fully on that train. From my perspective, YOU disappeared. So what do we do? What can you do? 

You look for new ways to communicate with me, because the old ones don't work any more. You get creative, and don't get discouraged. You KNOW I am in there (or on that train) and you look for ways to connect with me. 

I know connecting isn't easy sometimes, and what works today may not work tomorrow. But when we do connect, we will smile and laugh and hold hands.

And my train will return.




Tuesday, 28 October 2014

The Small Miracle of Resetting the Bongs


It was the find of a lifetime.

A grandfather clock in oak which exactly matched my furniture, fit into a corner of my living room perfectly, and was available for garage sale prices. I hovered around it, afraid someone else would snap it up. My son was working for a company where he had access to a truck, and the clock made a careful journey across the city and into my house. 

I loved it. It looked so classy, and the single bong on the half hour and hourly chimes were comforting. At the time, I was a widow, and it's rather loud ticking and bonging was like having someone else in the house.

Only one problem. It kept terrible time.

A beautiful piece of furniture, it gained about five minutes every hour. I suppose there are people who, for a price, would fix my lovely clock, but it wasn't a price I was willing to pay. You don't get a fantastic garage sale deal and invest more money into it. At least I don't.

So every few days, I engage in an exercise I call "resetting the bongs." Because the chiming of the clock is coordinated with the time, you can't just resent the time on the clock when it is wrong. If you do, you will have it chiming ten o'clock when the face of the clock says two o'clock. There is nothing worse than a clock which is totally tells the wrong time. After all, what are clocks for?

So I begin the tedious exercise of resetting the bongs. I move the face of the clock forward by half hour increments, until the bongs match up with the real time. BONG (half hour.) BONG BONG BONG. BONG. BONG BONG BONG BONG. This exercise continues until I am finally at the right time. For a day or so.

There are times when I think I need my bongs reset.

I am my father's daughter when it comes to time. My father was only late for things when my mother was involved, and it drove him nuts. The routine when getting ready for any event: Dad got himself ready and paced by the door a good half an hour before the earliest possible time to leave. Every five minutes, he sent me to my mother to try and hurry her up. Mom would be sitting at her vanity table in her slip, putting on her "face." Nothing or no one would hurry her up. After the makeup came the dress, the jewelry and the shoes. By the time she was ready, I was a stressed out bundle of nerves, and my Dad--well, we won't go there,

I guess I could have gone either way, but I am Daddy's girl. I arrive at work just after 7:30 most days, when I start at 9:00. I'd rather miss something than walk in late. I have an inner disdain for people who are always late. I keep my feelings to myself, but lateness severely annoys me.

I need my bongs reset.

Of course, punctuality is a virtue. But it's not a god. I recognise in myself a subtle smug attitude. I think it's respectful of everyone's time to be prompt, but it doesn't make me a better person in the core of my being. It doesn't give me the right to judge someone who is late, or allow irritation to cloud my feelings for them.

Much more important is how I use the time God gives me. Each day is a gift, and He wants me to use it wisely. It makes me cringe, but judging someone who is late for a meeting is not how God wants me to use the time He gave me today. Ouch.

Lord, remind me today that I am responsible for me, my attitudes, my self-talk and how I spend the days you give me. "So teach us to number our days that we may get a heart of wisdom." Ps.90:12 ESV

Wednesday, 15 October 2014

Care partner Wednesdays--When the "pill" of choice is knitting needles


It was not a good day.

An incredibly perceptive person, Ida attended a fitness class she usually loved in the morning. The instructor wasn't feeling well, and left immediately after the class was over, but in her mind, it had something to do with her. Maybe there was some kind of conspiracy, or maybe he was mad at her, but it left her anxious and weepy. She almost skipped lunch, but was persuaded into the dining room. During the meal, she was morose, eating but not socialising with her table mates like normal. After lunch, she felt something was wrong with her grandson, and again became weepy and anxious. As we talked, I realised she looked tired, and suggested a short nap might help. She agreed.

Just as she was leaving the lounge to go to her room, one of my fellow Advocates pulled out the bin of knitting. The group of ladies who spent the afternoon clacking needles and tongues were gathering and the volunteer who assisted them had just arrived. Ida hesitated at the door and then left, presumably for her nap. In a few minutes, she returned with a tangled ball of wool and two needles.

She's never been a part of this group, or expressed any interest, although she'd been in and out of the lounge where they met several times. She sat fingering her wool, which was tangled beyond hope (or so I thought.) The volunteer sat beside her and said, "I can help with that." Ida found the end, and together they began to untangle and unwind, chatting as they worked. When I returned from my meeting over an hour later, they were just finishing.

More than wool got untangled that afternoon.

Ida's anxiety, fear and sadness were gone. There are no guarantees it won't return later in the evening, but for those few hours, it left her. The only side effect was a friendship birthed between the two ladies and a tidy ball of wool.

We are constantly looking for non-medical interventions as we pursue culture change. Here is what I have learned.

1) Something might work today and not tomorrow.

2) What works well for one person will fail utterly for another.

3) Some ideas are totally predictable, and some surprise the heck out of you.

4) They often take a lot of time and effort.

5) They take "out of the box," creative thinking to devise.

6) Sometimes they don't work. Sometimes, nothing works.

7) The only "side effects" are positive.

7) They are incredibly rewarding for everyone involved.

Anti-psychotic and anti-anxiety medications have their uses in a small group of people--mostly those with pre-existing mental health conditions. If used, they should be in the lowest effective dose, and monitored closely.

Before this type of medication is considered, it's important to look at what else relieves the symptoms. Is it music? Some time in the fresh air? Visits from family?

Or perhaps it's time to pull out the knitting needles...


Wednesday, 8 October 2014

Care partner Wednesday-- Life after Diagnosis



You're sitting in the doctor's office beside your mother. Your heart is pounding. There were months of suspicions and worry, weeks of tests, days of reassuring yourself and having conversations in your mind. Finally, it comes to this.The doctor turns to your mother and says,

"You have Alzheimer's"

Time stops. You were almost certain this is what you were going to hear, but until the words came out of his mouth, your world was populated by "maybes" and "probablys." Nothing was for sure.

Now, it is.

Often, the entire focus is on the person with the diagnosis, but what are you feeling? All of these may not apply, but I can guarantee some of it does.

1) Fear. You've probably heard horror stories about what lies ahead and you are terrified about the consequences. The future stretches ahead in darkness, and you don't have a flashlight.

2) Apprehension. You look at your life as it is now, and wonder how you can add "care partner" to your resume. Will you be able to support her? Can you go the course?

3) Ignorance. You may know very little about the disease, or have some misinformation.

4) Isolation. None of your friends are dealing with this in their parents. You have no one to talk with.

There are probably other emotions swirling around your brain and heart as you leave the office. Before you have had time to process the information, you need to comfort and support your mother. You must step into the role before you fully understand what it entails.

Here is my advise. Get help. You need someone to talk to who is knowledgeable about the disease, because there is plenty of misinformation out there. A great resource is the Alzheimer's Society, with their groups and workshops and many-faceted supports. Learn as much as you can, remembering that everyone manifests the disease in different ways. No ones experience is just like yours, but you can learn from others.

You are going to be experiencing many emotions--not all of them pleasant. When the dust has settled, find someone to talk to and sometimes vent to. A friend, a pastor or priest, a small group leader or a counsellor. Take care of you, so you can take care of the person you love.

Those words will change your life. Things will never be the same again.
But they won't end your life, or even the life of the person with the diagnosis. Alzheimer's is terminal, yes. But between diagnosis and the last breath, there is a lot of living.

Find it.


Wednesday, 1 October 2014

Carepartner Wednesdays--Death to Bibs!


Several years ago, I visited another facility for a course I was taking. I was there over the lunch hour, and we were toured through the "dementia unit," as the course was related to this topic. They were proud of their modern, newly built area. It was lovely, and they had all the latest in terms of dementia care. Then I saw the dining room.

The tables were bare, except for paper place mats and residents wore large, plastic bibs. At Christie Gardens, all tables, even in our dementia unit, had linen table clothes and napkins. Our bibs were fabric, and although not beautiful, they looked better than the stark plastic ones. I asked about tablecloths, and was told such a thing would create too much laundry.

I went home feeling smug. We did much better than that. Our dining rooms looked elegant.
Bibs were a necessary evil, but...

Sometimes I wonder how how often, when caring for our elders, we accept things because everyone's doing it, has always done it and says it has to be done that way? Probably every communal care situation across the country has bibs for residents who can sometimes spill food when they eat. I can hear the voices--"We're not changing them after every meal!" "Think of the laundry!" (They said that about tablecloths, too.)

I understand the issues, but they look so ugly, it hurts me. They are insulting. (I slop on my clothes, and no one makes me wear a bib.) Infantile. (Babies wear bibs.) UGLY!

Bibs have bugged me for years, but I couldn't come up with a solution. Once I sewed one for a lady that looked like a blouse and vest. She loved it, and it was classy, but not practical. I wasn't prepared to mass produce, Also, it was distinctly feminine--what about the men?

Then, culture change began at Christie Gardens, and we started to look at things in new ways. Accepted practices could be questioned--and what was best for the resident took precedence over accepted practice. We looked at new and creative ways of serving our elders. Everyone had a voice.

I am thrilled to tell you as a result of an initiative I have jokingly dubbed "Project Death to Bibs," we will have no more bibs at Christie Gardens as of Monday. Our residents will be asked if they would like to protect their clothing, and if that is the case, they can use the linen napkin folded beside their plate. It can be placed in the lap or tucked under the chin, and for those who might need a little extra protection, small clips will be available to hold it in place. It will have the air of fine dining.

This is a small step in our culture change journey. It's an outward sign of the growing, pulsating life among us as we learn and discuss and capture the vision. It's also a huge step in our culture change journey, as we share the excitement and courage to be different, for the sake of our elders. 

To change our world.

Wednesday, 24 September 2014

Carepartner Wednesdays--Connecting with Staff


You dreaded this day.

You knew it would come. You saw it coming. You probably put it off too long.
Now it's here.

It's moving day. Your family member is moving into a care situation.

You've spent month visiting, asking questions and trying to figure out what the best place would be. This one is new and looks beautiful, but the staff seem to patronise the residents. That one is older and a bit run down. The other one seems good, but the waiting lists were too long. That one cost too much. You looked talked to others and struggled, and finally made the best decision you knew how.

You waited. Finally, the call came.

Now your family member is settled in, is adjusting and you should be breathing a sigh of relief.

Except...

You have some questions about the staff.

They don't do things the way you would, there are things you don't like, and details are getting missed. Some days, you are more stressed than when you were full-time care partner. Why can't they get it right? What happens when unfamiliar staff are on? How can you be assured your loved one is safe and well cared for?

We refer to the "daughter from Florida" syndrome. She (and it's almost always a "she") lives out of town, and feels guilty about that. When she flies in for a visit, she creates havoc, finding                    fault with everything, questioning every routine and activity, and makes everyone's life miserable--often including her own family member. When she leaves, everyone breathes a sigh of relief.

I was that daughter, once. My Dad was staying at an interim home until the new home he was to move into was open. We arrived to find him slumped in a wheelchair, drugged out of his mind. They put him to bed, but we kept trying to rouse him. He stirred but didn't respond. I marched to the nursing station and demanded to see his chart. I recognised (but ignored) the looks I got, and leafed through the list of his medications. The nurses began to talk about "periods of aggression," which was the reason he was drugged. I thought, "I'll show you aggression." I was furious, and back then, I didn't know what I know now about non-medical interventions.

This story has a good ending. We stood around his bed, calling to him. My sister kept saying, "Ann has come from Ontario to visit you." After several minutes, he raised one hand without opening his eyes, and muttered, "She shouldn't have spent the money." My sister and I grinned at each other. Dad was back. Within a few weeks, he was moved to the new facility, and things were much better.

In this case, I had good reason to question the staff, and this wasn't a carefully chosen facility, but a holding place until the other was finished. But I recognised, even as it was happening, that I was being "the daughter from Florida."

Giving up the position of primary care partner to another (or several others) is tricky. There is relief, but there can also be a sort of jealousy, and the conviction that no one else can do it quite right. Also, because someone you love is deteriorating and you feel out of control, you may well try to control what you can (such as what drawer the sweaters are put in, and what they are eating.)

For many years, I've been a staff member, and worked with families to ensure they feel comfortable about leaving their family member in our care. Here are some suggestions from both sides.

1. The staff is not the enemy. Get to know them as people. Show an interest.
2. Evaluate. Ask yourself, "Does this really matter?" Maybe it does. In that case, make sure staff know what you would like. Maybe it isn't important to anyone but you. Drop it.
3. Communicate. If you want people to do something, tell them in the nicest way possible. Be kind, but also be thorough. Make sure everyone gets the message. This may mean talking to a supervisor, writing a note--whatever gets the message across.
4. Go higher. If you have made every effort to get a message across and are not happy with the results, speak to a supervisor.
5. Give praise. Praise is the oil that keeps the wheels turning well. They will always turn, but with praise, they fly! Don't forget to tell a supervisor when someone has done well.
6. Volunteer. There is no more popular family member than the one who helps out. You can join in regular activities, go on trips, take people outside. Your loved one will be a part of this with you, making it a win-win.

There is one exception. If you suspect abuse in any form, take it immediately to the highest authority.
Abuse, even in language and attitudes, is never acceptable and shouldn't be tolerated for a minute.

We have families who, after their loved one has passed away, have come back to serve again with other residents.

They know they are among friends.


Wednesday, 17 September 2014

Carepartner Wednesday--The Domain of Joy


A woman in her 90's pulls her pants above the knees, sits back and suns her legs. A man with dementia gathers firewood and helps build a fire like he did so many times during family vacations.
A man in a wheelchair, virtually blind, becomes teary during a "walk" in the woods, as he remembers his father's hotel in northern Ontario where he spent his summers as a boy. An elderly woman who was an accomplished artist seriously discusses the colours and composition of the leaf stencils on the T-shirt she is painting.

Joy.

Have you ever noticed that in advertising, "happy, joyful" people seldom depicted as elderly? Why?

Perhaps you think the answer is obvious. (I've heard "growing older isn't for sissies" more times than I can count.) No one is denying that there are some difficult issues in aging. People tell me about their bodies not doing what they want, and how frustrating that is. Their friends die, and that is both frightening and lonely. Their children become their caregivers, and that can cause embarrassment and conflict.

But each stage has it's challenges. There is no time in our lives when we say, "Now, life is perfect." Neither is their a time when we say, "The challenges are so great in this period of my life, joy is impossible." That might be the case for a period of time, but like a bubble trapped under water, joy eventually floats to the surface. Life ebbs and flows, and joy is possible in all circumstances.

At the end of August, we took a group of residents away for three days of a "cottage experience." We stayed in a large, double cabin, in a place which was totally wheelchair accessible. We cooked our own meals, sat in the sun, gathered around the table and talked, sang around the campfire and had a blast. We laughed, told stories and listened. We (staff and residents) experienced joy.

For the last several days, I have been working to put together a powerpoint presentation of the experience. This photographic album has put me back in the middle of the fun, remembering. Here are a few highlights:

* It seemed with every meal, the group enjoyed lingering and chatting. Breakfast the first morning was a fresh crepe for everyone as they arrived at the table, coffee and tea, mini-muffins and toast. Long after the last bite was eaten and cleared away, people were still sitting, telling stories, laughing and enjoying each other's company.

* A man in his late 80's tasted his first s'more.

* A man with dementia would start to become agitated at night, declaring he wasn't staying, and looking for his wife, who passed away a few weeks before. We asked him to play his harmonica for us, which he did for over an hour, interspersed with stories from his childhood and teen years. His anxiety turned to laughter and his domain of identity was full.

* I was wondering how the silly songs of campfire would go over with a man who was a businessman all his life, and I was prepared to take him elsewhere if he was unhappy or bored by it. He surprised me by laughing and singing along.

* We had a barbacue one night on a huge, half-barrel barbecue pit. Hamburgers, chicken and corn on the cob. I wasn't prepared for how delighted everyone was with the corn. Obviously, still on the cob was a way of serving corn they seldom saw any more, and they attacked it with enthusiasm.

* The watermelon seed spitting contest was great fun.

* Small eaters became big eaters!

* Any living arrangement has it's housekeeping details, and one man became invaluable in doing the dishes and catching flies!

This is the fifth time we've done this, and each year we learn something about the residents and ourselves. There's no denying it's exhausting and a huge amount of work, both before and during. But the rewards fill my domain of joy to the brim.

When on man came home, his wife asked him how it was. "It defied description," he said.
And then he cried.

Joy.

Saturday, 6 September 2014

The Small Miracle of New Growth



  

Our small community, like many others, was devastated by the effects of the ice storm of December, 2013. For weeks afterwards, ankle-deep piles of broken branches littered the streets. I've never been in the aftermath of a hurricane, but the effect on nature must be similar. My heart hurt to see the mess and the fractures limbs and devastated trunks. We will never be the same.

The snow came in January, covering it in a merciful blanket of white. No one was fooled, though, as the lumpy hills were waiting until spring to display their graveyards, and the trees bowed low, weeping.

When spring began to waken and new life burst forth, I watched those trees and worried. A stunted leaf appeared here or there, but many looked gaunt. Our entire neighbourhood was lined with decrepit reminders of what used to be. 

Worse by far, though, was the day I came home to find an orange "X" on most of the trees. Really? Only one in ten to twelve trees was going to be allowed to remain. Huge gaping spaces would be everywhere. I wanted to cry.

Over the next weeks, the nightmare continued. Tree after tree was taken down, leaving a bare stump. We looked bigger--more open, but in a naked, shivering sort of way.

Last week, I had to walk to the train station. Walking to the train station means I have been stranded without a car, and is usually accompanied by mutterings under my breath. It either means leaving half an hour before my normal crazy-early start of the day, or walking home on aching feet. Either way, I am not good company. That's why it took 15 minutes for God to get my attention.

Each stump had a new tree growing.

Some of the more recent cuts had  few small branches peeking from the side of the stump. One of the first trees cut had at least 20 limbs about five feet high. The new trees were going to be stronger and fuller than the originals.

Isn't that just like God?

I can think of times in my life when I have been shattered by circumstances. Some were of my own making, but often, life happened and left me broken and terrified. I was cut down, shredded, and unsure how to go on, or even if I wanted to. Of necessity, I continued to function on the outside, but inside I was hollow and spent, cut down,  discarded. 

I cried out to God.

The God of second (and third and many more) chances, watered me and sent the warm sun, and I began to grow new branches. Despair turned to tiny branches of hope, and purpose and meaning was restored.

If you are living through an ice storm, and are feeling destroyed, listen to the words of your loving Creator.

"For I know the plans I have for you" declares the Lord. "Plans to prosper you and not to harm you, plants to give you a hope and a future." (Jer. 29:11 NIV)



Wednesday, 3 September 2014

Carepartner Wednesday--the Domain of meaning



Remember the old "B.C." comics? (You have to be a certain age to know what I'm talking about.) One of the themes had a character climbing a mountain to ask the wise man on the top about the meaning of life. Presumably, after he was told, he would go back down to live his life better. The truth was, often he went back down bemused at the answer.


This is not that.

We are not seeking the meaning of life, but what gives life meaning.


"Meaning--significance; heart; hope; import; value; purpose; reflection; sacred." 1

The domain of meaning is the one I have the most difficultly with. What gives life meaning? Like a butterfly, it's hard to catch.

Although the specifics are different for everyone, there is a common theme. My life has meaning when I feel I am important. I can contribute. What I do, and more importantly, who I am, makes a difference.

I hear frequently, "I'm no use any more. I can't______________(fill in the blank) or ___________(more blanks) and I'm not good for anything." Our challenge with the elderly is to turn the focus away from their losses, which they all have, to their gains. What has been added to their lives in their many years of living? What wisdom have they gained? What wonderful stories of their lives can they share? What activities which they enjoyed are still possible in some form?

This domain is intimately connected with several others. When my domain of identity is intact, I am freed to find meaning in my life. When I am feeling connected, "Meaning is generated because of the caring relationships we have nurtured with one another." 1

I see it every day.

I am writing this at my desk on lunch hour. Outside the lounge where I sit, a man is working on the patio with a broom and a garbage can. When he is finished, my patio will be spotless, with every leaf and drooping flower picked up or picked off, and his domain of meaning will be full.

Down the hall, two ladies are returning from lunch. One has had a rough few days with anxiety, and the other is walking her to her room and chatting with her, making sure she is feeling connected and safe. Meaning.

In a few minutes, a group of ladies will come to my lounge to knit squares, which will be put together into afghans and sold to staff. The money will help with the renovations in our neighbourhood.

In our mission to be care partners, we must remember we are just that. Partners, not givers. It is so easy to default to giving and doing for someone who needs a lot of support. If we aren't careful with that, however, we will steal from them independence, and rob them of meaning.

Next week: The domain of joy. And lots of wonderful, joyful stories from our camping trip, where the average age was 91!

Wednesday, 20 August 2014

Carepartner Wednesday--The Domain of Connectedness



"This is my mother."
I was startled by the statement, but even as a newbie to dementia, I knew enough to smile and go along with it. The lady to whom she was referring looked older than her, but only by a few years. Ten at the most. But the lady seemed to agree with the relationship, answered to "Mother!" when she spoke to her, and they moved around the room arm-in-arm, so who was I to question?

I did, question, though. Privately, I asked one of the nurses, who laughed at me. "No, of course not. They're almost the same age. Maybe Mavis looks like how Jean remembers her mother looking, and she believes Mavis is her mother. And now Mavis believes it too. So what's the harm?"

That was my first exposure to the power of connectedness. Jean had family who weren't thrilled with the relationship, but went along with it. Mavis was a single lady with few connections. They both benefited. 

Connectedness is essential to well-being. The Eden alternative says:
"CONNECTEDNESSbelonging; engaged; involved; connected to time, place, and nature."1

I would go farther to say that friends are essential to well-being. Elders are proud of their families, and love them beyond measure, and those connections are essential, but they often feel guilt regarding the time their care takes away from their children's (niece's, grand children's etc.) lives. Friends, on the other hand, are peers, and a visit from a friend is like gold. 

Friends help friends. M. doesn't often leave her room, so J. goes and sits with her and they chat. J. gets anxious, so L. spends time with her. A whole table of residents worry when G. doesn't show up for meals. E. is physically disabled, but is a friend to H., who is cognitively impaired. These kind of connections send an important message: YOU ARE NEEDED. An elder who is experiencing multiple physical challenges can feel they are not worth anything any more. Connectedness says, that's not true.

There are other kinds of connections that can also be important. L. loves to go to choir. It gives her a sense of purpose. The others welcome her, and replace her music if she loses it (which happens frequently.) This connection adds to her well-being. H. plays his harmonica, and spontaneous groups gather to sing. The glow on his face describes how connected he feels. D. loves the dog, and comes to visit several times a day. M. loves to feel the sun on her face, and is happiest when someone wheels her out to the garden. 

The key to connectedness is to know the person. What makes L. feel connected leaves V. feeling cold and troubled. It's about interests, personality and what brings joy.

And sometimes it's about humour.

Mr. T., who is virtually blind, leaned across the table to talk to Mrs. S. "You are pretty." Mrs. S.'s face lit with one of her winning smiles. "Mr. T., " I whispered across the table, "are you flirting?" 
Ignoring me completely, he looked in Mrs. S.'s eyes and said, "I'm flirting with you."

Now that's connection!

1. http://www.edenalt.org/about-the-eden-alternative/the-eden-alternative-domains-of-well-being/

Wednesday, 30 July 2014

Carepartner Wednesday--The Domain of Security



"To take away all risk and chances to make mistakes is to take away the chances to be human." 1

That's a radical statement.
(I love radical statements!)

Isn't taking away risk what care of the elderly is all about?

Think of all the equipment we use to do this. Wheelchairs (with seat belts), walkers, bed rails, restraints, bibs, incontinent products, locked doors, chair alarms, bed alarms. Some of these are necessary and useful, and many of them invade privacy and destroy rather than enhance the domain of security.

Let's talk about negotiated risk.

Negotiated risk says, "I know there is some risk involved, but the risk to my quality of life is greater if I am not able to do this. Therefore, I (or my power of attorney) will sign an agreement absolving you of all liability. If the worst happens, I can't sue you."

Mabel loved to be outside, and would often walk around the building of the long term care home where she lived. She had a walker, but refused to use it. She "didn't need that thing." One day, she stepped off a curb and fell, painfully twisting her ankle. Her family knew she had dementia, and could also get lost on one of these walks, although she'd never ventured out of sight of the building. They wanted to keep her safe, and asked if she could be moved within the locked unit.

A trial stay, involving being in the locked unit during the day and going back to her own room at night, was a disaster. Quiet, pleasant Mabel became aggressive and angry. She lashed out at staff, and was nasty to other residents. She lost interest in the activities she always enjoyed, and withdrew.

Fortunately, her family realised this wasn't working, and reversed their decision. Mabel was again allowed to walk around the building, and they signed a negotiated risk agreement, absolving the home of all responsibility.

What was happening? The family, because they loved Mabel, wanted her to be safe. Secure. They knew, within the locked unit, there was little chance for her to hurt herself, and an infinitely greater chance when she was outside. Mabel was kept where she was safe.

But Mabel's reaction showed all involved that her domain of security was severely damaged by their actions. Security, for her, was having the freedom to walk around the building, admiring the flowers and watching the children play. When that was taken away, Mabel felt insecure and violated, which led to anger and aggression.

We can be so safe, we aren't secure. Interesting paradox, isn't it?

Security also involves respect.

"Security also expands beyond the basic need for safety to include right to privacy, dignity and respect. A person receiving support services often finds their space becoming public space, forcing her into involuntary, intimate situations with strangers." 1

Respect means I work at becoming a friend rather than a stranger. I know you, so that we can talk about things that are familiar to you, and allow you to know me. When we are friends, my security isn't threatened when you care for me. When the elderly become frail, and their care needs involve the most personal of activities, this is incredibly important. In order for the domain of security to be intact, caregivers need to be familiar, trusted and people with whom they are comfortable.

Safety, respect, security.
The balance is both incredibly difficult and absolutely essential in order for this domain to flourish.



1.http://edenalt.org/wordpress/wp-content/uploads/2014/02/EdenAltWellBeingWhitePaperv5.pdf

Sunday, 27 July 2014

The small miracle of words


"Gracious words are like a honeycomb, sweetness to the soul and health to the body." Prov. 16:24

"If you can't say something nice, don't say nothin' at all." Thumper

During the sermon this morning, tears sprang to my eyes as a memory surfaced. Tears are a sure indication of something deep within me being stirred. Pastor Doug was talking about the impact of the tongue from the book of Proverbs, and mentioned a teacher who had such influence on him, he remembered those lessons to this day, and still had a small gift she gave him.

I remembered two teachers.

In grade three, my teacher felt that intimidation was an effective teaching tool. I was good at many things, and my budding writing skills were emerging, but those weren't areas I remember her focusing on. Basic math wasn't my forte, and I struggled. It was like cotton wool was wrapped over my brain during math class, and I couldn't get the concepts to stick.

One day, she called me to the front of the class. Shy and feeling vulnerable and afraid, I picked up the chalk and stared at the math questions she wanted me to solve. Having my classmates watching (and a few snickering) exacerbated the problem, and even the math I knew flew from my mind. I was paralysed. Miss T. then began to berate me in front of the class, a method she assumed would improve my performance. What it did was make me cry. In disgrace, I crept back to my seat, a wounded animal. I wouldn't recover for many years.

Jump ahead to grade 11. My grades were mediocre at best, but my teacher, a man with incredible insight, saw something in me. When my parents went to the fall teacher's interview, he said to them, "Someone has told her she is stupid. I am going to convince her otherwise." An interesting sideline is, my parents didn't know about what Miss T. had done, so were skeptical of his words. They relayed them to me, and immediately in my mind I was standing in front of the chalk board again. I was awestruck at both his insight and his interest.

I was a brand new Christian and Mr. A. was an atheist. He was my homeroom teacher, and taught me history that year and the next. He challenged me, and I remember long conversations after class where I was stretched, and learned to both voice my opinion (silence had been my secret weapon to that point) and to think deeply and learn to defend what I believed. I developed a passion for history, and wanted to understand the "why" behind events. I discovered, to my astonishment, that I was a person of worth, with a mind that worked, and opinions that mattered.

My marks rose steadily. At the beginning of grade 11, I was averaging low 60s. By the end of grade 12, I scored an 87%. (Of course, I dropped math in grade 10...) At the end of grade 12, I wrote Mr. A. a note, telling him how his belief in me changed my life.

Four years later, I graduated from Seminary with two degrees, and wrote Mr. A., asking if he would attend my graduation. I wasn't sure if the letter would get to him, or if he would remember me. On the night of graduation, I scanned the crowd, and was delighted to see his quizzical smile. He told me his wife was graduating from university that night, but they talked about it, and she agreed it was important for him to be there for me. I never met his wife, but will always be grateful.

Both these people were teachers, but teachers aren't the only ones with influence. Each of us has the chance to say to someone:
"You matter."
"I believe in you."
"I appreciate you."
"I am thankful for you."

I've not always been good at this, but I think I have improved. I've learned to stop and pray when I am upset, instead of allowing hurt and destructive words to tumble out of my mouth. I'm learning not to judge, and to give the gift of encouragement and affirmation whenever I can.

Sometimes, I fail, and I've learned to say, "Forgive me." This used to be more difficult. Pride would get in the way.

Now, I remember the broken child at the blackboard, and how those words would have changed her life.

"Thoughtless words can wound as deeply as any sword, but wisely spoken words can heal." Prov. 12:18


Wednesday, 16 July 2014

Carepartner Wednesday--The Domain of Autonomy


It was a desperate time. My husband was in the cardiac intensive care unit of a Toronto hospital, fighting for his life. His heart was large and floppy and not doing what hearts should do. He was on the list for a heart transplant, and various methods were being used to get him through until that happened.

I was working full time, spending a few hours with him at the hospital at night before taking the hour+ journey home. Life felt out of control. This was especially true for Bill, who couldn't even sit up in bed. There was no autonomy--no choice. Even his food was carefully chosen for him and measured, as he was only allowed a certain amount of fluid in a day.

In the midst of that madness, we invented a game. He was wearing an oxygen mask, and I would get a cup with ice chips and toss them one by one in the holes in the mask.  He would try to catch them. Between the ones that melted (they were chips, after all) and the ones that missed (I'm not a great shot) he only got a few, but we were amusing ourselves, and it seemed to be a way to lighten a horrible situation. We made the choice turn pain into a game.

Until the nurse yelled at me.

She saw me leaving for more ice chips, and lit into me. Those counted in his total liquid intake,  didn't I know? How many had I given him?  Didn't I realise this was all scientifically measured and I was putting him at risk?

I came back to the room and smiled at him, changing the topic of conversation. I left shortly after, and cried all the way home. Besides being humiliated, my one tiny choice and our silly little game were crushed and destroyed. I felt destroyed, too.

It's part of who we are to desire autonomy. Choice. Freedom. Our country was built on those principles, and we, its citizens, hold them dear.

"Simply put, to be autonomous is to be one’s own person … to be respected for one’s ability to decide for oneself, control one’s life and absorb the costs and benefits of one’s own choices." 1

Autonomy is what makes us people, separate from those around us.

It is especially important in community living, such as long term care or retirement. When people are living together, there are rules, and usually they aren't decided by the people involved. When to get up, when to eat, what to have--the list goes on. When someone enters long term care, they can feel like all their autonomy is lost. They are told when meals occur, and although there are probably choices, if they have a craving for something special, it's probably not on the menu. There is a certain time for a shower, and a time to go to bed. A person can feel like all choice is gone. Some caregivers feel they must do everything for the person they are caring for, further destroying autonomy.

So what do we do?

Respect looks for ways to restore autonomy. Here are a few scenarios.

"You want to sleep in? You can, and we will bring you breakfast when you are up."
"You want something special to eat? How about we buy the ingredients and make it together tomorrow?"
"When would you like to have your shower? If you're not up to it now, maybe we can try again in an hour."

The bottom line is respect. If I'm coming from a place of respect, I will look for ways to give you as much choice as possible. I will ask your opinion. I will value it when you give it.

And I won't crush your ice chips.

1. http://edenalt.org/wordpress/wp-content/uploads/2009/06/EdenWell-BeingWhitePaperv5.pdf

Thursday, 10 July 2014

Carepartner Wednesday--The Domain of Growth



Friday was patio lunch in my neighbourhood. Homemade pizza, caesar salad, and ice cream in sugar cones. Even though the weather was too cold and windy to have it on the patio, the eight residents who joined me in the lounge for lunch had a great time. So did I. These lunches are labour intensive, but every moment is worth it when the group chats and giggles and enjoys each other's company.

This Friday, though, I made history along with the pizza. A 97-year-old man took a few bites and turned to me. "Do you know, I have never in my life had pizza before."

How is this possible?

He proceeded to pronounce it "very good" and eat the whole thing, plus the salad, an ice cream cone and  drink two cups of coffee. 

I was a part of the domain of growth in that man that day. A new experience. Learning something.

The domain of growth has been the hardest one for me to wrap my understanding around. Our society  associates many things with elder hood--frailty, inability to do the things they used to do, illness, dementia, pain, depression. "Just keep her comfortable--that's the best we can hope for." These words weren't spoken about someone in the last few days of life, but a lady with dementia who is stable and responsive. 

Growth? How is that possible?

Perhaps we should start with the Eden Alternative definition of an elder. “An Elder is someone who, by virtue of life experience, is here to teach us how to live." 1

Teach us? 
North American society has lost the concept that age brings wisdom, and wisdom is a gift dispensed by the aged.  We turn to technology, but it can only give us information. Only those who have lived through wars, had families, made mistakes and learned from them can take the knowledge and add their wisdom and experience to it.

How do frail elderly people grow?
They move to new living situations and adapt to them.
They sing in the choir and learn new music.
They try new recipes.
They suggest how an afghan should be put together and try different combinations of squares.
They make new friends and find ways to maintain contact and relationship with long-time friends.
They encourage.
They tell their stories.

What about those with dementia?
May of the above scenarios are true of them, too, but even those in the later stages of the disease can grow and share. One lady with profound dementia leans forward and listens with every part of her being when "Anne of Green Gables" is read. Another sings or hums with pleasure as she listens to her favourite music on an iPod. For another lady, it's having scriptures read to her. She often recites along with the reader.

"The opposite of growth is death--physical and spiritual. Individuals living with frailty continue to grow and teach us how to be human beings in a caring community. Everyone has the potential to be a "growth partner" to someone else." 2

My challenge each day is to look for these opportunities for each person in my neighbourhood, and to take the time to gather the many nuggets of wisdom that are available to me.  It's there, but not always where I am expecting it. 

Sometimes it's in the pizza!


1. http://www.edenalt.org
2.edenalt.org/wordpress/wp-content/uploads/2009/06/EdenWell-BeingWhitePaperv5.pdf