Wednesday, 25 February 2015

Carepartner Wednesday--The Carepartner's Dictionary--H

H is for hospital.

Don't go there.

There are times when it is necessary for the elderly person to go to hospital, but this is a discussion and decision you need to make before the occasion arises. Here are some not-nice facts that make it imperative to decide early.

  • Most hospitals are experts in acute care and specialities such as obstetrics, diseases (such as cancer etc.) and the various surgeries that go with them. Very few specialise in the treatment of the elderly. 
  • Many doctors aren't well-versed in treating the elderly. 

  •  Some doctors aren't as familiar with the special effects (interactions, side-effects) drugs have on the elderly. Drugs can build up in a frail elderly person's system to dangerous levels.
  • Ageism is rampant in hospitals. Not all hospitals and not with everyone, but it's certainly common. The elderly (especially those with dementia) aren't treated with respect or understanding. 
  • Going to the hospital is difficult on an elderly person. For those that are cognitive, it is disorienting and frightening. Waiting in emergency rooms and triage lines can be exhausting for those who are frail and ill. If the person is also has dementia, aggression and anxiety can escalate.
Then why would anyone go?

There are reasons for the elderly person to go to hospital, and guidelines to help them through it.

If an elderly person has an "event" that cannot be treated at home, or if they are in a care setting, in the place they live, they need to go to hospital. Sometimes this means just for assessment and treatment, and sometimes it means admission.

Here are some examples:

A fall with pain where a fracture is suspected. The person can't weight bear (and could before) or can only do this with great difficulty. Or, the arm or whatever other limb is affected is in great pain. An X-ray is necessary, possibly surgery (as in a broken hip) or setting or treatment. Whatever the outcome, it's imperative that the person is properly assessed at hospital.

A nosebleed that won't stop.

A respiratory infection that needs IV antibiotics.

Symptoms that suggest a stroke. For this, you should move quickly, as success of treatment is time sensitive.

Possible heart attack. Welllll--this is where it gets dicey. Because if a heart attack is suspected, CPR will probably be performed, and what might be deemed "heroic measures." This is where you need to make decisions.

Does your loved one want to be resuscitated in this kind of a situation? That may sound like a ridiculous question (who wouldn't want to be resuscitated?) A physically frail 94 year old with dementia. An elderly person in chronic pain. Someone with an incurable disease who is at the end of their life. We're not talking mercy killing here, we're talking about needlessly prolonging the life of a person who is close to death. 

Because these are difficult conversations and painful decisions, they need to be made before they are necessary. A DNR (do not resuscitate) form needs to be filled out and kept on file, and if the person does need to go to hospital for one of the above reasons, the form should go with them.

This kind of preparation will give you both peace. If a trip to the hospital is needed, you will have have some measure of control of the situation.

Wednesday, 18 February 2015

The small miracle of risking and swimming tests

I've never been a risk taker.

I don't understand people who are. Why would you willingly do something that isn't safe, that could end in failure, that could hurt? I hear people talk about the thrill of the experience, but for us non-risk-takers, there is no thrill. There is fear, worry and stress but no thrill. I don't get it.

When I was in my early teens, I took swimming lessons at camp. If you worked hard, you could progress a whole level during the week. At that time, there was just Junior, Intermediate and Senior, before you took qualifications to be a lifeguard. Each level was comprehensive and it was a great accomplishment to move from one to another. I was a good swimmer and one summer, I enrolled in the senior class. All week, I worked at learning all the skills, but when Friday/test day came, I didn't take the test. Why? Because I might fail.

The next year I did exactly the same thing.

For many years, that's how I lived my life. Safely.

Oh, I did some things. I got married and had children. I ran my own business. I got a second job. We moved. But for the most part, my decisions were made based on the risk factor. If it was risky, I probably wouldn't do it. Sadly, I made decisions for my children when they were small based on my fears, something I deeply regret.

I don't remember what precipitated it, but one day, I realised my world had gotten small. Minuscule. Every time I moved, I bumped against one of my fears. I would turn and there was another one.

This is a devastating way to live, and not even a little bit God-honouring. Every decision I made told God I didn't really trust Him. I lived by fear, not by faith.

It's been a journey to live another way. One that I am still on.I stumble and fall into the trap of fear, but I get up, take His hand and begin to walk again. Sometimes I walk with my eyes scrunched and knots in my stomach, but I walk. God, He has tremendous patience. And love.

Seven years ago, I made the concrete decision to take some courses and walk toward the dream of a lifetime. Very scary stuff. At first, the dream was to write and get published, but deep within the recesses of my heart lay another dream, so frightening and wonderful I could barely say it out loud. 

I wanted to write a book.

It wasn't until two years later, during a second course, I learned I could write fiction. Since then, I completed a third course, started a critique group, learned more than I ever thought was possible about writing fiction and wrote a book. I did. I wrote a book.

I am in the process of editing it now, but a week from today, I take it to a writer's conference and begin looking for an editor and agent. I've been to writer's conference before, but never with a finished manuscript. In my mind, I am standing on the shore, shivering, thinking about the swimming test.

This time, I will jump in.

Wednesday, 11 February 2015

Carepartner Wednesday--The Carepartner's Alphabet--G

G is for guilt.

Carepartners do guilt well.

Here are some examples:

  • guilt for the times you received a call in the middle of the night and you didn't run over. (Instead you lay awake worrying...)
  • guilt for the times before diagnosis when you were impatient and abrupt because you didn't understand what was happening.
  • guilt for the times after diagnosis when you were impatient and abrupt because you understood what was happening and it frightened you.
  • guilt because you have other responsibilities and can't be with your loved one all the times they would like.
  • guilt when you do something that isn't about care, but is about looking after you.
  • guilt when you want to be doing something else other than looking after this person
  • guilt when you are tired and it feels like no one cares and you are angry about that
  • guilt that you don't visit enough (whatever "enough" is)
  • guilt when you don't want to visit
  • guilt for having fun doing alone something you used to do together
  • guilt for not feeling guilty
Have I covered it? No, not nearly. Guilt is one of those emotions that seeps into every experience, especially for caregivers. Add to that the loved one who can be adept at pushing the "guilt button" (did you know you have one of those?) and you have an impossible situation. You can never win and never feel you have done well. Guilt is always there, telling you how you could have done better.

How can guilt be controlled?

Part of dealing with guilt involves setting boundaries, but that's another discussion. For now, here are a few practical steps.

1) Get the true story. If your loved one is begging you to visit every day, stay longer and be with them every waking moment because they are miserable, find out what is really going on. If they live alone, you may have to arrange for friends to visit or even pay for a companion who can take them out on a regular basis. Remember, you are not the answer to every problem. 

If they are in a care setting, find out from staff what happens when you aren't there. Do they stay in their room and mope or participate? Do they engage with other residents? Do they seem depressed, or is that just whet you are hearing? Whatever the answer, plan at least some of your visits around meals or activities where you can engage with others with them. Sometimes a little help in the relationship department helps. 

2) Don't allowed yourself to be stretched too thin. If this happens, you will be prone to impatience and feeling sorry for yourself. It will be hard to enjoy the relationship. This is a place to set a boundary, as hard it may be. "I'm going to stay home and rest in the evenings this week and I will be in to see you on the weekend.

3) When you visit, be totally focused on your loved one. Do something fun together. Enjoy them. Have a good visit. Even if they don't remember it a few days later, you will know you spent good time together, and your loved one enjoyed themselves.

4) Get real. There are limits on what you can do, how often you can be there, how much you can give. Lie the frog in the pot, as the demands get greater and you try harder and harder to meet them. things can get way beyond reasonable before you take an inventory. Stop and look at how much you are doing when you start to feel stressed. There may be short periods of extra stress, but you can't maintain this for long.

5) Don't obsess. If all your thoughts are crowded with worry about your loved one, if you feel you should be visiting every day, if you find it hard to allow professional caregivers to do their job--you are obsessing. This helps neither you nor your loved one. Talk to someone--a friend, a priest or a professional. Work to get your relationship on a healthy plane.

The thing about guilt is, it takes a lot of energy and accomplishes nothing.

Energy is a valuable resource. Determine in yourself to get a handle on guilt, so your energy isn't wasted.