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:

Affection!

Attachment!

Applause!

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


3 comments:

  1. Greetings from Kenya. I love this article wow. Thanks for sharing. Nice blog.

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  2. Thanks, Ann. Doug has been diagnosed with Vascular Dementia and is at the stage where his brain is not retaining information. He repeats himself continually and we go over things many times over. What advice do you have for me at this stage in order to cope better?

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  3. Dear Nancy,
    This takes a lot of patience, as you well know! I'm sure you have times when you feel frustrated and think you can't say it one more time. I'm sure you could write the book on this, but here are a few suggestions:
    1) Keep things simple. Less is more when it comes to information, instructions, etc. If telling him things ahead leads to anxiety rather than anticipation, tell him just a few hours before. When giving instructions, or asking him to do something, just one thing at a time.
    2) Can he be left alone for short periods of time? If so, give yourself a sanity break every day. Go for a walk, take an exercise class or go shopping (that wouldn't do it for me, but most people aren't like that!) Anything that gives you a chance to enjoy the "sounds of silence:" for a short time. If he can't be left alone, find a friend of his (or several friends, or family) to come visit, and you leave. You need this.
    3) GET SUPPORT!! I say it over and over, but you can't walk this journey alone and stay sane. Find someone you can talk to on a regular basis.
    4) It helps me to think what it must be for them. I have a resident who cannot keep even the simplest appointment straight (fitness class at 11:00) and she goes over it and over it, writes it down again and again. I see her anxiety and frustration, and my heart goes out to her. And I tell her one more time, fitness is at 11:00. A heart of compassion goes a long way.
    5) Laugh. Don't be afraid to laugh when you want to cry. Sometimes it really helps.
    Love you! Ann

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