Wednesday, 25 March 2015

Carepartner Wednesday--The Carepartner's Alphabet--L

L is for loss.

My car is eight years old, and last year for the first time, I had to pour $5,000. into it over a six month period. Battery, tires, breaks and a few other things I don't know the name of. It hurt, but as it had never had any major repairs, I wasn't surprised. It's running well now, but at its age, it's just a matter of time before there's something else. Cars wear out.

So do people.

Talk to any elderly person, and you'll probably hear a litany of all the parts that don't work. Ears strain to hear normal conversation, eyes squint to identify who has entered the room, legs tremble when trying to walk, skin develops lesions, bladder and bowels loose control--the list goes on. Sometimes the mind doesn't function like it used to. Diseases such as Alzheimer's, Parkinson's and Multiple Sclerosis become a part of regular conversation.

Loss is hard. When people have been strong and independent all their lives, it's difficult to admit to anything less. Often people deny ("There's nothing wrong with me!") or get angry or bitter, focusing totally on the loss. Life isn't what it used to be, so it isn't worth living.
I would never minimise the struggles so many go through. It's frightening, it hurts and it often gets worse. As a care partner, you are a part of this, either by watching it in another, or perhaps by participating in it yourself.

How do you deal with loss?

Here are a few simple suggestion. Whole books have been written on this, but in this forum, I want to give you s\a few points to think about.

Name it
What is the loss? Don't talk around it or avoid using the word. Call it what it is. When you give something a name and learn about it, you shrink it to reasonable proportions. Incontinence isn't a black cloud that affects every situation and a worry that clouds every interaction. It's a condition, and there are interventions and products that help deal with it.

Grieve it
There's no point in acting as if difficult situations aren't difficult. That's pretending, and doesn't get anyone the help they need. You as a care partner, and your loved one if they are able, should talk about it. How does it feel? What do they miss the most? Does it make them feel angry, sad, ashamed? Do they feel less of a man or a woman? These are conversations that may need to be revisited several times. It's important to express the grief and whatever emotions are there.

Find it
I read something wonderful the other day. A woman with dementia was writing about the progression of her disease, and she said, "I have dementia, but it doesn't have me."

What ever condition, disability or disease you have, don't let it have you. By this I mean, don't let it define you. Don't let it be more important than the person inside. Look beyond the disease to the "you" who is still there. Because you are.

Find the person you are. Your personality with all of it's quirks, humour and experiences, is still there.  You have wisdom and background no one else has. And you, no matter what your losses, have something to contribute to the lives of others. Find it.

Don't stop at "loss."
Go beyond lost to found.

Wednesday, 18 March 2015

Carepartner Wednesday--The Carepartner's Alphabet--K

K is for knowledge. Knowledge is essential.

When you first start on the care partner journey, you realise how little you know about so many things.

If there is a disease involved (such as Alzheimer's or Parkinson's) you want to find out as much as you can about it. Causes, treatments (medical and non-medical) progression and prognosis are all high on your list of questions.

Then there are medications. What is each one for, what about side effects, and is the dosage correct. How will the interact? Is there a different effect on older people with these drugs?

The system for getting supports is another area where knowledge can be lacking. How to get subsidy for a wheelchair, how to get long term care, respite care or into a day program.

Each level of need brings with it it's own questions. You just get one thing figured out, and another one appears. There is always more to learn and more to figure out how it applies to your specific situation. Every care situation is different and has it's own questions.

In all of this, there is an area of knowledge that can be forgotten, and is at least as important.

You need to know your loved one.

I can hear you now. "What do you mean? This is my mother/father/sister/husband/wife. I've known them for many years. I know them better than anyone." That may be true, and you may share memories with that person that no one else has. But here are a few things to consider:

a) People change. Not everything, but sometimes preferences and even habits can change very late in life. The man who was always up and ready to face the day by 6:00 a.m. now prefers to sleep until almost noon. The sharp dresser starts to prefer t-shirts and track pants. The tea drinker suddenly has milk instead. Just as people grow throughout their lives and even until the end, they can also change.

b) There may be details of preference you've never considered or thought to ask about. Do you know whether your aunt prefers soft pillows or firmer ones? What kind of toothpaste does your mother like?

c) What I like today might not be what I like tomorrow. I'm not always going to like the same thing each time in all areas.

Last year, the peer support group that I facilitate put together a comprehensive, two page document called "What you should know." They considered every aspect of life (from food preferences to clothes, to church attendance to pillows) from the aspect of"If I needed care tomorrow and couldn't tell you what mattered to me, these are the things I'd want you to know.." It was fascinating to me some of the questions they came up with--questions I would never think to ask. They are wiser, because they are care partners.

Get to know your loved one. Go from what you do know, and explore areas where you might not know the answers. It will give you interesting conversation, probably a laugh or two ("I didn't know you don't really like asparagus! I've been making it for you for years!") and you will know a little better the person you are caring for.

quote poster

letter K-

Wednesday, 11 March 2015

Carepartner Wednesday--The Carepartner's Alphabet--J

J is for judgement.

Your loved one's judgement is impaired. You need to use yours.

My mother always told me to "use my judgement." The problem was, my judgement wasn't the same as hers. My judgement said ice cream was a good dinner, staying up until midnight was a good plan and never using an umbrella was justified, because umbrellas were geeky.

Judgement can be tricky.

As a care partner, you are called to make judgement calls all the time, and it's seldom the case that the best answer is clear. Often, you are forced to make difficult decisions. Here are some examples:

1) Your mother isn't sleeping at night, and the doctor recommends some medication. She's already on several medications and you wonder about side effects and interactions. You do some research, but the answers aren't clear. The truth is, no one knows for sure how each person will react to the drug. Elderly people are much more likely to have drug interactions. What do you decide?

2) Your aunt has dementia, and you are her care partner. You can see at some point soon, she is going to need more care. Some days are better than others, and you don't want to take her from her home while she is still functioning fairly well. On the other hand, you are afraid for her safety. You've been able to get some supports in place in her home, but that's a temporary measure. Also, will a place be available in the place you want when you need it?

3) Your father is living in a care setting and becoming frail. He walks with a walker, but his gate is becoming quite unsteady, and the physiotherapist is suggesting that he get a wheelchair. You want him to keep walking as long as possible. You're afraid if he gets a wheelchair, he won't walk and will lose that ability. On the other hand, you know the drastic consequences of a fall. What do you do?

You don't have a crystal ball. When a care decision is unclear and difficult, you can only do your best.

Get the best information possible. Find out all there is to know about the situation. You can only make an intelligent decision based on facts. Check with professionals, but also others, such as other family members who have faced the same issue.

If you are a praying person, pray. There have been many times when I have found the direction I needed through prayer.

Go with your gut. At the end of the day, when you have to go home and leave the person you love, which decision can you live with. If you are continually uncomfortable with a decision, even after getting all the facts, don't do it until you feel some measure of peace. You have to be able to live with what you decide

Make the decision. There comes a time when you just have to go forward, even if you aren't sure.

Don't beat yourself up if it doesn't turn out well. So many of these things are subjective, with many factors and no way of predicting outcomes. If you've thought it through, researched and made the best decision you know how, and it didn't go well--let it rest. You did your best.


Letter J-

Wednesday, 4 March 2015

Carepartner Wednesday--The Carepartner's Alphabet--I

I is for...wait a minute. There's no "I."

Every care partner knows it's a selfless role.  Physically, it can mean sleepless nights and long days. It might mean turning, lifting and caring for another person. Even if the person is cared for by others, there's still making time to visit regularly. Emotionally, you can feel that your heart is being squeezed every time you see the person you love deteriorating. Mentally, you can feel stymied, as the other challenges in life conspire to  dull your brain.

How does a care partner survive?

There are a few basics we've talked about before in your survival kit and one I would like you to think about and put inside.

Unlike most roles in life, you did not choose this. It chose you. In order to run the course and be there when you are needed:

1) Set boundaries (refer to B in the care partner's alphabet.) No matter how much you love the other person, or want to be there for them, there are limits to what you can do. You need to make time for yourself every day and schedule regular respites, where you spend time replenishing. Without that, you will wear yourself out and break down physically and emotionally.

2) On the positive side, talk to someone. Find a friend or someone who will listen and be there for you. You need an outlet to talk about your feelings. If this is someone who understands what you are going through, that's a bonus. However, a friend who loves you and listens will fulfil the same need. When I was caregiver for Bill, none of my peers had ever gone through this experience. I was only 55 and I was the only person I knew younger than 80 with a dying husband. But my good friends listened, took me out to dinner, brought dinner to me, listened some more and loved me. That's what I needed.

3) Get help. If you are in a position where you are sole caregiver, make sure your support systems are in place. There are supports available. Keep asking (your doctor, other care partners, other professionals) until you find what you need.

So here's what I'd like you to think about.

It's easy to say, "The person I loved is no longer here." But they are. There are parts of them that are different, and you will need to work to find ways to relate to the new parts. There may be surprises every day. You may feel that you just get something figured out and it changes.  But, they are there. Look for them.

Look for the sense of humour. Look for things they enjoy. They may be the same things as always (I've noticed the love of ice cream seldom changes) or it might be something new. Or the same but different. Perhaps mother enjoyed walking and can't now, but loves to be taken out in her wheelchair. Try things. If they don't work, laugh and try something else.

Look for the person you love every day.

There is no "I" in care partner in the sense that the role requires selflessness. The "I" is there in the relationship (which does have an "I.") You are still the daughter, the wife, the important person in their life. You have a relationship with that person that involves memories and experiences, past and present. They may not remember, but you do. Celebrate your role with them, and the person they are today. Talk, listen, laugh, smile, hug, love.

Five minutes after you leave, they may not remember that you were there. But the warm feelings of time with you last much longer.

The "I" is in relationship.

photo of letter I-