11 Comments

What we say, how we say it, what we don’t say, and our body language provides meaningful messages. As caregivers this is particularly important information.

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Janice, I shared your Substack last night at our Austin meetup with someone who is interested in starting a newsletter about caring for parents with dementia. Love the bits of wisdom you share!

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Hi Kristi, Thanks so much. It is a tough job. There are several FaceBook groups that she might get some help from as well: the Alzheimers and Dementia Caregivers Support Group, Get In The Life Boat, and Dementia Caregivers Group. Also the AARP and the Family Caregiver's Alliance sites might offer ideas.

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Such smart, concrete advice, Janice. You always make your ideas so clear. Thanks so much!

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Amazing reminders. Thanks Janice 😊

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The difficult patient does best! Ask, demand, if not receiving the care you need, make calls up the food chain and ask people to come to the room. Keep calling!!!

Make such a fuss, they do what you say and discharge you alive. It's OK to say no to treatments as well. Some docs are crooks. There are good ones too. I find pulling out a spiral notebook with a pen when sitting in a hospital room next to a loved one gets a big response. Thank-you for the post.

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Hi Dee Dee. Good point.

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These are excellent tips, thank you Janice. I know sometimes I kind of panic. Not really panic but freeze, so I don't say anything and regret it later. Really imprinting these tips in my mind is helpful.

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Hi Donna, That was my problem - the freeze - I was really good after the fact in my mind.

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I don't know if this was your situation, but I think it's really difficult when one has been in a relationship where the partner was typically also the decision maker....and then that partner is no longer capable of making those decisions. Suddenly (and probably after many years) the more compliant spouse is responsible for making decisions, standing up for themselves (and others), managing difficult conversations, and learning how to be the 'person in charge'.

I guess that, regardless of whether dementia is involved, it's always a good idea to learn how to be more 'assertively kind' if one is prone to being a acquiescent.

Not sure if I've expressed this very well....💚

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Hi Heather, That was exactly our situation. In some ways I was fortunate, because the four years of caregiving gave me time to build some skills before Dan died. Experience taught me that it's a sound idea to learn how to be assertively kind - period, as you say..

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