Wednesday, 26 September 2018
"I'll never put my mother in a home."
I've heard these words many times over the years. They're often said with conviction and a
sanctimonious air that doesn't invite dialogue. There are many hidden messages in these eight words, and although not all of them may be intended, some definitely are.
In some cultures, it's considered dishonourable to not care for your elder in your home, and anyone who chooses a different route could be shunned by their relatives. Disapproval and anger may result. I understand that. I'm not referring to cultural differences, but the unspoken message in those words:
"If you put your elder in care, you are abandoning them."
"My choice is better and more honourable than yours."
"Caring for an elder at home is always the best choice."
Whatever the conclusion a care partner comes to, you can bet agonizing hours went into the decision, so let's stop judging each other.
When Home Care Is Best
Home care has the benefit of the familiar. The elder can stay in surroundings and with people who are well-known and not have the upheaval of moving. It works best when there is plenty of family, friends and other supports for the primary care partner. It's helpful to have a combination of respite care, such as a program or regular classes that the elder attends every week, or care that comes in. Help with bathing and other routines keep the tasks from becoming overwhelming. From the care partner's perspective, there must be plenty of support in various forms.
From the elder's perspective, they must not be isolated. This is one of the greatest hazards of home care. Often care partners still need to make a living, families are busy and the elder has no opportunity to spend time with their peers. Mobility and other health issues may make it difficult to get out, even with help. Their world shrinks and what was supposed to be the best possible choice becomes a prison.
As they come to the end of their lives and reach a palliative state, there are more challenges. Palliative doesn't necessarily mean they are end-of-life, but they aren't going to recover, and there are often multiple physical challenges. Doctor's appointments, specialists, treatments--how are these accomplished? Bringing in nursing care is exorbitantly expensive. As the bills and the worries mount, what is the care partner to do?
When Community Care Is Best
By community care, I mean living in a community in a situation where medical help is always present. This might be long-term care or a private care home. In this situation, medical support is always available, and your elder has the benefits of a community where they can connect with others of their generation.
Long-term care as I know it leaves a lot to be desired, but if this is the only option financially, the care partner can and should still be active. Advocate for care that is person-centred. Be there often to provide not only companionship but alternative activities. Get to know the professional care partners and join in with whatever is happening.
My dad chose to move from the home he had always known and the community he lived in for all his adult life and moved in with my sister hundreds of miles away in Manitoba. Although it was his choice, it wasn't the best one. He never saw his friends or many of his family again. I was only able to visit him once a year. My sister worked full-time, and although her family reached out to him, he was isolated. As his dementia and care needs increased, it became evident that this wasn't working. A new care home opened a few miles away, and she moved him there. She was able to visit often, and when I visited, I entered into the life of the home and helped peel potatoes for dinner! He was a favourite among the staff, and when he died in his sleep about a year later, everyone missed him.
The message is clear. Care needs and deciding what is best is complex. Sometimes the decision needs to change. There are many factors.
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Care PartnerWednesday--Never Say Never
Wednesday, 19 September 2018
"We've got a problem."
Megan's delightful British accent and belly laugh were my favourites, but she wasn't laughing today. She pulled me aside with a frown and confided to me in a low tone the seriousness of what they were facing.
Someone at their table for four was wasting milk.
She asked for a full glass of milk each morning, and only drank half of it. Every day. This was wasteful.
I understood that these ladies had lived through the depression. Two of them had come when they were children from Britain as evacuees and lived as guests among Canadian families. All of them knew how it felt to do without and to scrimp to make ends meet. I understood how waste annoyed and angered them. I also knew they were at a point in their lives which some people reach, where their worlds shrink and the minuscule becomes enormous. Still--
Perhaps the problem could be solved with half a glass of milk. Maybe she only wanted a swallow and we were giving her too much. We tried this solution, and the unthinkable happened. She asked for more.
I cringed, listening to the lecture. "You must finish it. You're wasting." This was said in a tone saved for only mortal sins.
When mobility falters and life is lived in one small room, some elders allow their worlds to shrink, and they become petty. They are interested mainly in themselves and their perception of how things should be. They can be difficult to serve and at times, difficult to love. They might isolate themselves and worry needlessly about the minutia of life. Families start to dread visiting as mom only wants to complain.
I'm thankful that this is a choice and not one everyone makes it. Tomorrow, I have the tremendous privilege of speaking at the service of someone who chose to live her final days in a different way. Although she could no longer see and her body weakened until she couldn't walk, she maintained her dry sense of humour and her adventuresome spirit. If something was happening, it just might be fun, and she felt she'd better give it a try. A great friend, she was kind to everyone. The staff who served her loved her and fought for her to have the best quality of life possible. Tomorrow I get to honour her.
Tomorrow also, I need to sit with the ladies before their friend arrives for breakfast and tell them, in the kindest and most respectful way, to lay off. That they're not the milk police. That their friend and how she's made to feel is more important than two ounces of milk.
But there's a lesson here. I can be petty when a co-worker annoys me or a family member snubs me. I can close my door and isolate myself rather than looking for new adventures. As I age, I have a choice in how I live and interact with others.
I choose to not be the milk police.
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Care Partner Wednesday--The Milk Police
Wednesday, 12 September 2018
Your family member has just moved into care. There is so much to do to get them settled. What will fit in the room? How should you set it up so they are comfortable? Meet the doctor and the nurses, get their clothes labelled, on and on...
For some, giving over care to strangers is a great relief. The burden has been enormous for too long. You can go home and sleep tonight, knowing they are cared for.
For others, it's a strain. How can these people possibly know how my mother likes her tea, which are her favourite pyjamas, and which piece of music calms her? Do they want to know?
In the myriad of tasks that crowd your time in those first weeks, put "Get to know the care partners" at the top of your list. These people will have an intimate relationship with your family member. Open communication with them will improve everyone's life.
Here are some tips to get started:
1. Get to know their names. There will be a full-time and part-time person for the day and afternoon shifts. There are people at night as well, of course, but you will probably never meet them. Get to know the names of the four care partners who give the regular care, as well as the nurses for both shifts. Write down their names and positions for reference.
2. Introduce yourself. Time your visits so that over a period of weeks you get to meet all of them.
3. Write down pertinent information about your elder. Don't write a book, but pick out a bit of history and some likes and dislikes that will make caring for them easier. Post it in the room.
4. Consult them. "I was thinking about getting mom some new tops. Do you think these would be easy for her to get into?"
"I was wondering if mom could handle coming home to my house for Thanksgiving dinner. Do you think that would be a good thing or too much for her?"
"My sister out west wants to talk to mom, but mom doesn't seem to hear on the phone any more. Any ideas?"
As they get to know your elder better, they will be students of them and have all kinds of useful suggestions.
5. Give sincere compliments. The work these people do is difficult. Many find it rewarding, but it is wearing physically and emotionally. Like a piece of chocolate, which you hold in your mouth as long as possible and savour to the last drop, a sincere compliment is tasty and satisfying. Here are a few examples:
"You always help my mother to look so lovely. Earrings, makeup and scarves were important to her, and I appreciate how you honour that."
"Thank you for taking dad out in the garden today. He's always happiest in the garden, and it made his day."
(To a nurse) "Thank you for giving mom her medication in jam. I noticed you do that just for her, and she takes her pills willingly now."
(To a nurse) "Thank you for calling me about dad's fall. I appreciate how you keep me abreast of everything that's happening with him."
There may be problems. If it's a specific issue, try talking to the person in the most non-confrontational way possible. "Can you help me understand why it was done this way?" There may be reasons that you don't know that make perfect sense. If talking doesn't help, go to a supervisor, but don't go with "guns a blazing." Talk to them about the problem and look for solutions.
If you are struggling with a personality conflict between your elder and their care partner, a supervisor will need to get involved and perhaps make a switch. Just ensure every effort has been made to make the relationship work. And make sure the problem isn't yours alone. If your elder and their care partner get along fine but you can't stand her, deal with it. Maybe you should go home and count your blessings!
We have had family members come back to visit, and the first thing they want to do is hug their favourite care partner. The effort you put into this relationship will benefit you and your elder every day.
You may find that you have found a hidden treasure.
Or made a friend.
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Care Partner Wednesday--How to Love a Care Parnter
Wednesday, 5 September 2018
"If I bring her computer down next week, are the proper cables in the room to get internet access?"
I looked blankly at the family member asking the question. Her mother had moved in last week and was getting settled. I was certain whatever cables she needed weren't in the room, and I had no idea who to ask to find out how to get them. It was the first time I'd had that question in my neighbourhood.
It wouldn't be the last.
Last week I overheard a conversation at breakfast. A resident who lives in another neighbourhood and eats in mine was talking to her friend. "You should get a computer. You can look up anything with it. You'd have such fun."
Although it's still true that most senior elders are not computer savvy, this is rapidly changing. And even for those with dementia or those who only know the kind of mouse you set a trap for, the computer age and social media have lots to offer.
I suggest a tablet rather than a laptop or monitor. Besides being easy to hold, and wireless, a tablet can be set up to be operated simply. Only those applications that are useful can be loaded, and it can easily be a shared activity.
Here are some suggestions:
Are there family members or friends who live out of town? Set up an email account for your elder, and show them how to type an email. If this isn't possible, help them write it, and you type it for them. Or, use your email. When the reply comes, sit and read it together and enjoy the news.
I have been using this for years with family members as they go on vacation. They send me pictures of their adventures with commentary and I print them off for their elder. One lady's daughter went on all kinds of journeys. Each time, I would get a file folder and fill it with pictures from their trip as she sent them to me. Each trip was several weeks, and it was hard to have her away for so long, but looking through the pictures helped.
One family with grandchildren and great-grandchildren in New Zealand have an innovative way of sharing with their grandma in Toronto. They upload pictures to a Canadian printing website who mails the photos directly to her door. The cost is reasonable, and Grandma is delighted to be able to hold the prints of her family.
Skype or FaceTime
A few years ago, a couple had a grandson who was living far away. Skype was new technology at the time and was certainly unknown to the grandparents. The family brought in a tablet and made the arrangements to meet in a quiet room so they could connect the grandson with his grandparents. Grandpa had dementia, but I'll never forget his look of wonder as he saw his grandson's face. When the boy said, "Hi, Grandpa," the tears began to flow, and not just Grandpa's. How beautiful that technology could bring this family together.
One of the great things about Facebook is connecting people who have lost each other. One of the groups I belong to on Facebook is from my old public school. My sister, who is 10 years older, belongs to the same group. People in their 60s and 70s are connecting with people they haven't seen for years. There are also conversations about buildings and businesses which are no longer there. "Did anyone used to go for milkshakes at Borden's Dairy?" Imagine the reminiscing and fun discussions this could spark. There are groups for everything. Universities, army regiments, church friends--the ideas are endless. They will probably need some help with this, but what a great activity to do together.
One of our neighbourhoods has Alexa and residents ask her questions every day. Alexa provides all kinds of fun and interesting facts.
There are so many instances when we say, "I wonder..." Google has the answer, and it's often fascinating. Our music therapist turns to Google for facts about well-known artists and shares them during her class.
Imagine looking up the address of your childhood home. Now imagine if you grew up in Germany or Italy, and you could look at the exact road you used to travel barefoot as a kid?
People who stay indoors most days are still interested in the weather. Is it hot? Is it supposed to rain? As I am helping with breakfast each day, I check my weather app and we talk about it.
There are many possibilities here. If your elder needs new clothes, look at websites together. It might be difficult at first to envision what the product will look like, but it's not that different from looking at a catalogue. Some stores have both catalogues and online ordering. What about buying a birthday present for that special grandchild? Or Christmas shopping? This is an excellent way to share the experience, and not only have fun but encourage feelings of connectedness and purpose in your elder.
Technology can broaden and enhance the world of our elders in so many ways. Have you used technology as a care partner with your elder? Have you an innovative use of technology?
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Care Partner Wednesday--Elders and Technology