She refuses to consider getting outside help, whether with him or a couple of other long term situations that are stressful.
I have been told several times to not do anything, and since I live with them and we share a car, I have to abide by that. But, letting things float is just making them worse, in my opinion.
I am concerned. If there should be a major problem (knock on wood), then it would be a mess, and they might be forced to make some changes. We're not there yet - both of them can drive, for example - but I'm someone who likes to be prepared early for the possibilities.
I have been occasionally pushing for her to attend a spouses/caregivers group, but so far no luck. What do I do?
2 Answers
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Find the Parkinsons foundation online and subscribe to a newsletter; attend the local PD support as well as the caregivers group. Bring home the literature and leave it where they might stumble upon it when you aren't there. When either of them expresses anger about you doing these things, be gentle. Take the opportunity to share something positive about the support groups, not the scary stuff. They may be terrified of attending and seeing what they fear: the advanced symptoms they know is their future.
What sort of outside help are you seeing they need at present? A local support group can help you work through this.
Is your dad under the care of a neurologist? Ask them to let you go to the next appointment. Is he taking Sinemet?
Parkinsons doesn't affect every patient in the same way, and the reaction to meeds differs too. Getting more info will help you help them.
My hubby doesn't have tremor or Lewy Body but he has severe gait problems and has fallen many times. I have removed obstacles, added handrails, night lights, anything that can help him not fall. As he has 'progressed,' we have added walkers. He needs PD meds four times a day, so I have alarms set to remind him. Is your mom doing things such as these for him now, or have they not come to that yet?
You are right to be concerned, and to look ahead and take precautions, and to keep gently encouraging them, especially your mom, to get information and a support group. Hugs to you for being a loving daughter.
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