Open your eyes, ears, hands and heart. Be observant. Pay attention to nuances in behaviour. Listen with your whole being to what’s being said by your care partner who lives with dementia. You may be amazed that people who seem to have lost their ability to communicate can in fact make their needs known and connect at profound levels. Listen to be enriched. Listen to be more effective in how you engage.
As I and a host of others have said many many times before and as all smart care partners eventually come to realize, it pays to agree:
- Do not argue
- Do not contradict
- Do not dismiss
- Do not question (rather, ask yourself questions)
- Do not infantilize or patronize
- Do not attempt to convince or use logic
Say “Yes, and…” to your care partner who lives with dementia. Go with their flow. When you do, your life and theirs will change for the better.
3) create/hold space
Make space for your care partner who lives with dementia to be who he or she is, whatever that means on the day or in the moment. Don’t try to make her or him into something she or he isn’t, and that includes wishing they were who they used to be. Remember that the core of who they are is is sill there, even though her or his self may manifest in different ways. Make space for the present and celebrate who they are in the moment. (More about that here.)
4) take care of yourself
Caring for yourself is vital. That means doing whatever it takes to find support, get respite, and have time away from your care partnering role. “Put the oxygen on yourself first,” everyone says – and for good reason! Your health is critical to your own and your care partner’s well being. If you don’t take care of yourself, there’s no way you can care for somebody else in the long term. Self care is not optional, it’s essential to having a good care partner relationship and less stressful experience.
5) walk away before you explode
“I didn’t mean what I said! I can’t believe I was so cruel…” These are the words of care partners who are falling apart at the seams. They are exhausted, depleted, at the end of their ropes, and they have said and done things they would never normally say or do because they have not paid attention to #4. If you find yourself at this level of crisis, walk away before you say or do something that will make the situation even worse. Give yourself time and space to breathe and recoup — a minute, an hour, a day, a week, a month, whatever it takes to get yourself back together.
6) walk back when you are strong enough
Because of the stigma of Alzheimer’s disease and other forms of dementia, people who live with dementia often become isolated when they most need our love and support. When you’re strong enough, and you are ready to take their hand again and walk by their side, please do so. They need you. If you can’t do it personally, help and support those who are able to do so in your place.
These tips and thoughts are based on my personal experience, as well as my knowledge and work as a certified PAC trainer‘.
Footnote: I would add one more – always try to retain a sense of humour. At 10.30 pm last night I couldn’t find Maureen and my heart was in my mouth: I thought she had gone on walkabouts. As I returned to the house to get my car keys she appeared in hysterics from hiding behind a door. How lovely that she has retained a sense of humour: I’ll get her back today!
Late News: Maureen has just found her missing engagement ring on the floor of the bedroom!