Wednesday, 13 September 2017
My friend, who I will call Jane, has been going through hell as a care partner. Her husband is suffering from a serious form of brain cancer, and their lives have been one crisis after another lately. Surgery after surgery, infection, seizures and multiple hospitalizations. Each day is a roller coaster of emotions, as she tries to negotiate devastating decisions while encouraging him. It's exhausting in every way.
Recently, Jane told me of several scenarios where "friends" questioned her decisions. They stopped visiting. They refused to go out with her husband because they felt uncomfortable. They said she shouldn't have encouraged her husband to have his latest surgery (although it saved his life.) They said he didn't want more surgery, although he had expressed many times that he wanted to live. They made her question herself at a time when she is feeling most vulnerable, and most in need of support.
These "friends" aren't the kind who read what I have to say, but maybe others have experienced this incredibly insensitive behaviour. So, to these "friends" I say, "How dare you?"
How dare you presume you know best? You have no idea the pain this couple is going through as they navigate this difficult journey. I hope you never will know how this feels because I doubt you could handle it with the grace Jane has.
How dare you question these decisions that are made through pain and tears? What gives you the right?
And at this time, when your friend needs the gift of your friendship more than ever in your relationship, and his wife needs your support and perhaps a break for a few hours, what gives you the right to withdraw, because you feel uncomfortable?
Dear "friend," you are not a friend. I have told Jane to get new friends, and that's happening. The couple who visit her husband in the hospital. The ones who bring meals or offer to shop for them. The ones who listen. I'm thankful there are people in their lives that go beyond themselves and what is comfortable and give to Jane and her husband. I am praying God sends more--an abundance of real friends who care.
Jane's experience can teach us all. When someone you love is a care partner:
1) Be there. Find out what they need, however practical, and actually do it. Shop, make dinner, clean the house, babysit--these gifts will never be forgotten.
2) Never, never say, "Call me if you need something." That's putting the responsibility on the already overburdened care partner. Instead, find out what they need and do it.
3) Listen. Don't fix, don't judge, don't give opinions unless asked. Just listen. It's truly a gift.
4) Be thankful. As you support your friend going through their journey, thank God for every day He has given you. Never take it for granted.
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Care Partner Wednesday--Dear "Friends," How Dare You?
Wednesday, 6 September 2017
Have you ever had your shoelace come undone at a time when it's impossible to stop and do it up? Your arms are full of parcels, or you are standing on a crowded subway platform? There is nothing more awkward than trying to two-step around a dangling shoe lace while attempting to keep your body upright.
That's kind of like my life right now.
There are loose ends everywhere. Small, annoying issues that need almost daily follow up, and big, audacious problems--that need almost daily follow up. I push one ahead by a centimetre and another stubbornly drops back two centimetres. These loose ends require constant attention--phone calls, emails, follow up and more follow up. It's beyond annoying and stressful.
One of my loose ends has been my car. At almost 10 years old, she has served me well. I bought her after my husband died, trading in both his vehicles. She was my first brand new car, and my favourite colour--red. I always name my cars, and she was Minnie. Like the mouse.
About six months ago, she started to develop electrical problems. I never knew what I was going to find when I got in. One day, the radio wouldn't work. Another, the windows stopped responding. The day she wouldn't open without several tries, I stopped locking her. Horribly stressful was the day the gas cap locked shut, and I couldn't put gas in her. However, worse than all of that was the morning I started her and had to push the brake to the floor to get a response. Oh, my.
Then there are the days of indecision. Do I fix her, to the tune of several thousand dollars, or do I start looking for something new? If I fix her, will that be all that is needed for a while, or will I have more problems in a few months? If I look for something new, should it be leased or owned, new or used? What brand? What colour?
Hey, colour is important!
This shoelace was dragging in the mud, and I wasn't at all sure I could stay upright.
Prayer and consulting lots of counsellors helped me to decide I needed a new-to-me, used Honda Fit. There is a Honda dealership within walking distance, and for me, it was a good fit. (Sorry...) My son-in-law helped me work through how much I could spend and various other options, and last Saturday, we headed to the dealership.
Two important facts to note here. I had a good friend praying that God would have exactly the right car waiting for me. And I, in a tiny voice, was reminding God that colour was kind of a big deal for me. With apologies to all my friends and family who have grey or black vehicles, I hate black and grey vehicles. In my little voice, I asked God if maybe the car He had for me could be something other than black or grey. I loved my red car, but I was open to other options. Just not black or grey.
In the dealership, our salesman took us out to look at the used cars. "Unfortunately, we don't have any Fits on the lot. They go as quickly as they come in." We looked at used Civics, but they were more than I could afford. I whispered to God that emotionally, I couldn't handle a long search. He knew that, right? We went inside to compare the cost of new Fits to used Civics, when our salesman came running to us with an enormous grin on his face. "We just had a Fit brought in. I didn't even know about it!"
We went outside, and there is was. I knew immediately it was my car. Not too old, good mileage, and white. I could live with white. If we had gone to the dealership a few hours later, it probably wouldn't have been there. The car I needed at the price I could afford. And white.
I brought her home tonight. I am overwhelmed by my Father who cares about my loose ends, my dangling shoelaces, and provides the right car, in the right colour, at the right time. Just for me. This God, the God of loose ends, can be trusted with all the other dangling bits of my life.
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The Small Miracle of Loose Ends
Wednesday, 30 August 2017
Few people seek out the role of care partner. Of those who do, most of them are paid to fulfil the role, and only a small portion of those feel called to the position. For the most part, the role of care partner is thrust upon family members who embrace it more or less reluctantly.
For some, the "reluctant" is definitely more.
Some people try to live in denial for a long as possible, thinking that if they don't admit the diagnosis, it won't be true. They refuse to see the losses that are obvious to others or attribute them to unrelated issues.
"She's developed a hearing/seeing problem, and that's why she can't keep up with the conversation."
"He's having a bad day. Everyone has those."
"She's just stubborn."
Denial is a difficult river to travel on.The inevitable end is the realization of truth, and that can be devastating when you've been building a fantasy to protect your emotions. Along the way, you may experience anger, there will inevitably be fear and profound sadness. Denial isn't pretty.
Even without denial, the reluctant care partner may struggle with anger. Why did life take this unexpected turn? Many times a wife or a child will think, "I didn't sign up for this."
Or, the care partner will focus on who the person was before their disease. With each passing day, the losses become glaringly obvious, and they may feel that they no longer know the person, or that they've lost them.
All of this adds up to a tsunami of pain.
How can we help?
Helping the reluctant care partner requires time and sensitivity. They may not be open to much advice, and most of the coaching needs to be done indirectly.
1) Give time. As the reluctant care partner processes what they are going through, it will help them to have frequent breaks. Even if the time away is for mundane tasks such as grocery shopping, they will appreciate the relief.
2) Give understanding and a listening ear. If they want to talk, be there to listen without judgement. Care partners often spend hours on their own, coping with their situation, and a listening ear can be welcome.
3) Give practical help. Housecleaning, a few meals for the freezer, running errands--all of these can give the support needed to help them adjust.
4) Be positive. You know that an elder, even one who is physically frail and has dementia, has much to offer. Model this by the way you interact. Treat the elder with love and respect, and show a genuine interest in them. Talk with them, ask questions, listen, laugh together and show how you are enjoying the relationship. One of the most difficult tasks for the reluctant (or any care partner) is to accept that the person they love has changed, and that's okay. They are still a valuable, contributing person. This realization is a stretch for many, and you will need to lead them gently toward this understanding. Show them how you are enjoying their elder.
The reluctant care partner isn't a bad person. They have been handed a difficult task, and they are grieving and struggling to find their way through. A smile, a hand to hold and an encouraging word can be the lifeline they need to bring them through.
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Care Partner Wednesday--The Reluctant Care Partner
Wednesday, 23 August 2017
A special person I know is moving her mom into care in the next month. What a frightening journey that can be! She wrote to me, asking for advice. This was my reply:
I was so pleased to hear you and your family had made the difficult decision to find a place for your mom to live, and that it sounds like a great place is available to you. That’s such a major decision, but I want to assure you, it’s the right one in so many ways. For your mom, she will get the social aspect of life that it’s just not possible to give her at home. Amazingly, she will make new friends and enjoy activities. You will be blown away by the way she blossoms socially. For you and the rest of your family (but especially you), you will be able to enjoy time with her without being exhausted by the care aspects.
So here are a few things that might help:
- try to come up with two, one-page documents. It will be tempting to make them longer, but stick to one page, as that is what people will read. The first should be your mother’s routines. When does she like to get up in the morning? What does she like to wear? How does she like her coffee (or tea.) etc. All those little things, that if someone knew, it would make life and the transition easier for her. I don’t know how the staffing works where you are going, but there will be someone who is going to put together a care plan for your mother. It may be a nurse. I would give a copy to them. I would also give a copy to the full-time PSW for days and one to the full-time PSW for evenings. For the most part, these are the people who will be caring for her, and they will probably appreciate knowing these things. It makes their job easier.
- The second document (one sheet again) should be who your mother is. Her simple pleasures (what makes her eyes light up?) and some of her personal history. Interesting facts that, if someone was talking to her, they could mention these things and she would remember and participate in the conversation. We try to come up with fascinating things that someone caring for her would read and comment on. (You met Pierre Trudeau? You golfed into your 90s? Wow, you travelled a lot of places! What was France like?) Put this one sheet into a frame and put it in a conspicuous place in her room. Maybe have a brightly coloured title like WHO AM I? or something like that. The idea is that people caring for her will get to know who she is as a person and talk to her about her experiences.
- Photo albums are also good. Of course, you and others can go through them and remember things, but people caring for her can as well, and there may be things she can tell them. Even if she doesn’t remember names or even what they are about, it’s always fun to look at pictures.
- Setting the room up, you should bring her favourite things. The chair she likes to sit in, pictures for the wall that are familiar to her, and whatever else will make this seem like home. One mistake people make is trying to cram too much in a small room. Especially if there’s a wheelchair involved, space is an issue. No rugs (tripping hazard) and maybe two chairs—one for her to sit in, and one for whoever is visiting. If it is labelled, you can probably have her favourite afghan or comforter for her bed, and a few other things. Definitely her basket of knitting
- Make sure they put her with people she can talk with in the dining room. Your mom is social, and she’ll be there every day, so this is important.
Now, for you:
- Emotionally, you might be surprised by how hard it is to let go. You have been a full-time caregiver, and no one is going to do things exactly like you, or care as much as you. You might experience some separation anxiety. Even though this is what you wanted, it will be hard to see someone else care for your mom. What you want is to see your mom connect with the people who care for her. But when she does, it might also be hard. Knowing this ahead of time will be helpful.
- Get to know her full time and part time PSWs (so, 4 people) and the full and part time nurses (2 people.) Try to connect with them and let them know you appreciate them. Sincere appreciation goes a long way. That way, if there is a problem or issue you need to bring to them, you have trust and relationship as “money in the bank.”
- From my perspective, we have two kinds of family members. Well, no, maybe three, but the third doesn’t apply to you at all. The third is the absent one, and thankfully, we don’t have many of those. The other two are “the families from hell” and the ones we all love. The families from hell question every single thing that is done, take a huge amount of time discussing the same issues over and over again, and stress about everything. I have been known to duck into a bathroom when I see one of them coming! We would never let it affect their family member’s care, but it makes life unnecessarily difficult for the rest of us. The ones we all love work WITH us to provide the best of care, and we feel that we are part of a team, rather than trying to paddle against waves of disapproval all the time.
- Also get to know whoever is in charge of activities. I have worked in that department, too, for many years, and believe me, they will be delighted to know your mom and know what she would enjoy participating in. Ask for a monthly calendar, and you can either time your visits so you can be there to take her to things she would enjoy or ask them to take her when you aren’t able to. Families who participate in activities with their loved one are so great and make everything more fun.
- Get to know other families, as well. I’ve seen wonderful friendships develop between family members.
That’s all I can think of for now but talk to me anytime about anything.
Wednesday, 16 August 2017
My car has reached that unfortunate state where the repairs and anticipated repairs mean I need to replace it. Ugh. I am leaving for vacation in less than a week. I wasn't planning on taking my car, but the multitude of decisions necessary to get a new one will have to wait until I get back.
The problem is, I have things I need to do before I go. Things that involve me going places and doing things. I need groceries. I need food for the puppy. I need to pick up something for work.
I need my car.
My car doesn't work.
I don't consider myself to be a super independent person, but this is annoying. Every task I would do without thinking now has to be strategized and organized and sometimes involves me going, hat in hand, and asking for a favour. It's frustrating and embarrassing.
But it's only for a few weeks.
I started to think about elders and their independence. Losing your car is only the first of many losses. What if I also lost my mobility, my ability to think clearly and my independence in the bathroom? In thinking about the residents I serve, I am struck by the grace and patience with which they accept their limitations.
One of my residents is blind. She sees only vague shadows, and can't find her way around. She calls on her friend, and they go everywhere together because her friend can see. I've never heard her complain, except to state in the most matter of fact way, "I can't see." She has a sense of humour and an enthusiasm for life that inspires me. When she comes back from the hairdresser and I tell her how nice she looks, she grins and says, "I'll take your word for it."
When I grow up, I want to be her. I want to face my disabilities with grace and humour, and never complain.
Remind me I said this.
As care partners, we need to develop a sensitivity to elders who struggle with shrinking abilities. Especially when you work in the industry, it's easy to become desensitized, and not realize how difficult the losses are. We need to extend grace, patience and love to those who struggle. Imagine what it's like to live in their bodies and give them the gift of understanding. Maximize their strengths and the abilities they still have, and give them opportunities to use them. Respect their limitations, and don't expect what isn't possible.
I have chronic arthritis. One day, and for several weeks, my right knee will hurt like the dickens when I walk. Without notice, the pain will shift to my left ankle, and I'll be hobbling even worse than before. Or I will go to grab something, and my thumb joint will remind me that it's there. I hate being slow and limping and looking pathetic, but that's my life at the moment. I can't help it. Often, on my commute, I will hear the impatience of people behind me on stairs or going through doors. I try to wait until most have passed, but I have to get to work, too. When I sense someone hovering and trying to hurry me along ("why don't you just pass--there's plenty of room?") or making an impatient noise as they rush by me, I want to say, "Would you like to travel for an hour in my body?"
As a care partner, I need to extend that grace to the elders I serve. I may not fully understand their challenges, but I can extend the gift of empathy.
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Care Partnr Wednesday--Independence
Wednesday, 2 August 2017
Imagine you are 10 years old. Do you remember the house you lived in at that time? What did it look like? What did your mom and dad like to wear? Did your mom wear an apron and make your favourite foods? Was your dad busy at work all day, and did the family eat around the table at night? Did your brother tease you, and your sister take your things? What about the friends you played with
--what were your favourite games?
What if you weren't imagining or remembering. What if you woke up one morning and this was your world--except it wasn't. You feel like a 10-year-old version of yourself, and you expect to hear your mother calling you for breakfast at any moment. Except something isn't right. You look around, and nothing is familiar. This isn't your room. This isn't your house.
What would you do?
You'd say, "I want to go home! Where is my mother? She's going to be looking for me!"
Now, what if someone came up to you and said, "Of course this is your home. You live here." You look around, and you know they are lying because you know this isn't your house. Even worse, someone says to you, "Your mother? you're 80 years old. Your mother died years ago."
Your reality--your real world--is the home you grew up in, with your family all around you. My challenge, as your care partner, is to leave my reality and enter yours. I'm not lying to you, or patronising you, but I enter your world with you, and we explore it together.
So, as you panic, because you are in this "twilight zone" state, where nothing is familiar, and you can't find the people you love, I need to go there with you.
"What does your mother look like? I bet she is a good cook. What is your favourite food that she cooks? I bet she has lots of advice for you--what kinds of things does she tell you? My mother always told me to eat my peas, but I hated peas, so I always looked for ways to get out of it. Did you use to do that? Was there a food you really hated?"
Slowly, your panic dissipates, and you begin to reminisce.
Dr. Bill Thomas, the founder of the Eden Alternative, has said, "if you have met one person with dementia, you've met one person with dementia." Every situation is different, every person is unique, and what works today may not work tomorrow.
Speaking dementia requires creativity. The bottom line is to realize that the person with dementia is in a different place right now. You need to find the place where they are and go there with them. You should never try to drag them back to your world. That will confuse, frighten and anger them, and it won't work. In the end, they will know you are wrong.
- One daughter made a fake medical degree and framed it for her father, who was convinced he was a doctor. (He had started in medicine, but the war interrupted his efforts. But in his mind, he practised medicine, so his daughter made it happen.
- The same man was convinced he'd been asked to appear as a guest conductor on the Lawrence Welk Show (long after Mr. Welk was dead because he saw reruns on TV.) His daughter bought him a conductor's wand and big band CDs, and he conducted the band. 1.
- I have spoken on a dead phone to a "father," asking him if his daughter could stay for dinner with us. She was afraid he would be angry if she didn't leave right now. He "gave his permission" and she immediately relaxed. After dinner, she'd forgotten the whole conversation.
"Validation is not about treating someone as a child. It's about respecting the person with dementia as he or she sees the world. It's about overcoming our own bias. It's about adding some dignity to the last years of our elder's lives by accepting that maybe there is more than one way to see the world. There is our way, of course. There is our neighbour's way. And there is our elder's way, even when dementia is present." 1.
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Cre Partner Wednesday--I Speak Dementiahttp://ctt.ec/S05c2Care Partner Wednesday--I Speak Dementia
Wednesday, 26 July 2017
We often associate anxiety with dementia, and that's legitimate. There's nothing like an impaired memory to cause fear, especially if everything and everyone is new to you every day--that's scary.
But that's a topic for another day. Elders who don't suffer from cognitive decline, but have an anxiety disorder, have an especially poignant struggle. I am care partner for one such elder, and I've worked with others in the past. They live a special kind of hell, and their care partner's challenge is to bring both peace and well-being into each troubled day.
Each person with an anxiety disorder has triggers. Small events can escalate into a full blown attack in minutes. An unfamiliar environment, some small medical issue (like a rash or a cough) an unfamiliar person giving care--these are just a few examples. An event which seems minuscule to us has huge, unresolvable implications for them.
When an attack occurs, there are several aspects:
- Speech may become slurred, and the ability to express themselves is hampered by hundreds of conflicting thoughts, running through their brain. Picture a Pacman game, where the little creatures are constantly colliding.
- Reasoning is missing. Don't even try to explain or reason with the person, as they aren't listening.
- Conversation is cyclical. You will go around in circles. Over and over again.
- They might become short of breath and dizzy. They are definitely a fall risk.
- There is no sense of humour present. You may be able to joke this same person out of mild anxiety, but it won't work during an attack.
- Distraction seldom works during a full blown attack. They know something terrible is about to happen, and they won't be distracted.
For the care partner, special grace is needed. Patience, wisdom, love, compassion and a sense of humour. (Keep the sense of humour to yourself during a full-blown attack, but it will help you get through.)
Sometimes, attacks come out of the blue, and you will shake your head, wondering where that came from. There are times when you can identify triggers and head them off. Sometimes, you just have to go through it with the person, because there is no way around it.
I am facing such a circumstance. On Monday, I have to tell someone with high anxiety that she needs to move from the room she is in, to another one down the hall. It's an unusual circumstance, but it's necessary. Here are some of the steps I have taken to make this go as smoothly as possible.
- I will tell her Monday afternoon. The move will happen Tuesday morning. This gives her the respect of knowing ahead of time but minimizes the stress time.
- I have a whole team of people ready to swoop in as soon as she goes to breakfast. We should be totally finished (including pictures hung) by lunch.
- Someone is taking her out for the morning after breakfast. Someone else is coming to have lunch with her.
- Her new room will be set up as closely as possible to the way the old room is set up. The bed she is used to is being moved.
- All staff are aware and are supportive.
- Staffing assignments are being changed so that she will have familiar staff in her new room.
- She has an (as needed) order for anti-anxiety medication, and it will be needed those few days.
With all this preparation, will it be seamless, and without anxiety? No, it won't. But we've made a plan, and it will be as good as it can. In a few days, we will be over this challenge, and on to the next.
Living with chronic anxiety is a burden. Care partners need to offer both strength and grace, through a filter of wisdom.
And don't forget the sense of humour!
CLICK TO TWEET--Care Partner Wednesday--The Crippling Force of Anxietyhttp://ctt.ec/0LsMaCare Partner Wednesday--The Crippling Force of Anxiety