How to maintain independence when dealing with dementia?
My MIL has battled Parkinson’s for many years, and over the last year has started showing cognitive decline as well, mostly confusion with occasional hallucinations. The episodes are happening more frequently and lasting longer. She doesn't get angry or scared, but she can get very confused, which we are thankfully able to bring her out of with calm reassurance. One thing that is difficult for me is that I never know what level of awareness I'm walking in to. She communicates with me via a walkie talkie... communicate being a strong word. She still (a year in) hasn't mastered talking into the walkie talkie, so I'm summoned with a beep, and I have no idea what the request may be. I strive to do all I can to minimize her suffering while maintaining her independence. You offer much different levels of help to someone who doesn't know what order to toilet in than you do to the intelligent, vibrant lady that's there most of the time. I feel like when she needs help, I'm not offering, and when I offer help, she's totally with it and my help comes off as patronizing. I wish there was a quick cognition test that I could, like, ask 3 questions and know what the deal-e-o was. We do talk about her health regularly, including her mental health. She is aware that she gets confused and that she forgets things, but I don't feel she fully grasps how often or how severe the episodes are becoming. The family feels that, especially during her "bad" times (early AM and late PM), she shouldn't be alone because she's not safe. In the spirit of medical autonomy, does she need to be told about this, or is this a compassion issue that we just make adjustments and she never knows? It is so complicated maintaining independence when the mind is being stolen away, piece by piece.
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"ask 3 questions"
Ask. Say. Do.
These were instructions from a Maternal Health Nurse for children but I use them with adults too.
Ask: recap what they are doing & asking what they will do next next (in a subtle way).
Say: verbal prompting to the next step in the task. This may be enough.
Do: If obvious they do need help, cannot do the next step even when prompted, do the task with them.
If possible, to preserve independence, do the task WITH them, rather then FOR them. Be a team.
Doing tasks FOR people can certainly be quicker.. & often necessary, but the risk is it can also dis-able if done too early/too much.
Your MIL is very lucky to have you!
PS You won't get it right every time - no-one would.
Thank you for asking your question, wanting to improve your Mil's life by helping with communication.
I think you and the family are right, in that she should not be left alone at those certain times.
The number one thing that I think you can do is stop requiring her to use the walkie-talkie.
It is a disturbing and inaccurate means of communication. You say yourself that you often get summoned by a beep. How do you think it feels on her end?
Leave her door open, go in there on a schedule, in addition to when there is a beep. There is no need to query her, just be present for her, not in a hurry to leave. She will ask you for help, imo.
Some caregivers have a gift, and will be straightening her bed, fluffing her pillows, bringing fresh water, offering a snack, emptying her trash. If that's not you, just spend time with her.