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.


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:




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