Lesson 1. The Journey Together
How to plan well for the future?
Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions.
Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you.
1.Activity
What are the person’s preferences when they are no longer able to bathe themselves? For example,
would they prefer
a male or female to help bathe them? How do they feel about having a close family
member bathe them or would they
prefer a qualified professional who is unrelated?
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What does the person you care for want to do themselves for as long as possible?
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If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future?
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What are their wishes at the end of life?
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If you find it helpful, please write down the questions that you might want to discuss in the space below.
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Intimate relationships may changeAs you progress through the journey together, partners may experience some changes in their intimate relationship.
At first, intimate relationships between partners may still be possible. As the disease progresses, the relationship will change and physical intimacy may become more difficult.
Let’s revisit the scenario with Hessa and Mohammed
Hessa is in the early stages of dementia and lives with her husband Mohammed. Hessa and Mohammed have a healthy, mutually satisfying physical relationship, but Mohammed is worried about the day when these relations may stop.
2.Activity
Think about it before reading on.
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Taking care of yourself
One of the most important things to remember as roles change is that you, as someone providing care
for a person with dementia,
need to care for yourself too. Throughout this manual we will teach you ways to do this.
Reminder
- It is okay to take a break.
- It is okay to ask for help.
- It is okay to feel frustrated sometimes.
- It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you.
Here are some tips for partners on how to maintain intimacy,
Tip
Ways to stay connected
- Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love.
- Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good.
- Try to maintain your sense of humour. This will help reduce frustration and tension.
- Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time.
