Activity
Mon
Wed
Fri
Sun
Oct
Nov
Dec
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
What is this?
Less
More

Owned by Robin

Practical dementia guidance. Compassionate caregiver support.

75 contributions to Dementia Caregiver Collective
hygiene
i noticed when i took my drive my sister and i to cape cod that for the entire week she did not shower. she did not smell and she takes beautiful care of her face and she has beautiful things but she didn’t bathe and she packed two terribly ratty shirts . there was no telling her anything. i once drew her a bath and she pretended to take it but didn’t. what is this about??? again i am in LA and she is in new york
0 likes • 3h
That’s a really good observation, and there could be several things underneath it. With cognitive changes, bathing can become surprisingly complicated: initiating the task, remembering all the steps, managing an unfamiliar bathroom, temperature or sensory discomfort, or simply not recognizing that a shower is needed. And sometimes the person genuinely believes they did bathe. The fact that she still takes beautiful care of her face is interesting, too. It suggests this may not be simply “she doesn’t care about her appearance anymore.” Some familiar routines may still be working beautifully while others are becoming harder. And the two ratty shirts caught my attention for the same reason. Packing requires a surprising amount of planning, judgment, sequencing and decision-making. I wouldn't try to figure out exactly what it means from one Cape Cod trip, especially from across the country. But I would put these observations on your list for her doctor: not bathing for the week, pretending or believing she'd taken the bath, the unusual clothing choices, repeated questions, and the other recent changes you've noticed. For now, you don't have to fix any of it. You're noticing. That's useful information.
i am new here
i have been so afraid to write my story here and it's really no different than anyone elses. i just can't bear to look at ther directions, suggestions, the reality of the situation. my brilliant, NYU tenured - literally professor of the year - sister has all the markers. i have to bone up here, but i'm devastated. she is 80 and i'm 65. she is in new york and i am in los angeles. there is so much to write and i'm just afraid. just afraid. i am a psychotherapist and i am afraid. i have such tone deaf friends with their well meaning but stupid suggestions. of course i wish she would "go out more" "see her friends more" travel more" but she does not want to leave her block. thanks god that she is letting me (mostly my husband) hire an attorney to protect her big asset (her condo) and what little she has in the bank - they do not pay professors what they should and NYU should be sued because they do not give pensions to their professors! my sister is okay now financially but i am worried about where her extra money goes (i am also talking to her accountant on monday with her permission - she thinks is just for the purposes of the trust i'm making for her, but i really need to know what the heck she has). i wanted my retirement to look like something very different than what i am projecting in to the future. i feel all my hard ass working days were going to be rewarded, but i am just broken over all this. she says she'll go to the doctor (a psychiatric gerentologist) because of her anxiety and memory issues (all recent memory stuff), her repeated questions, her computer not working and not going to the person who can fix it, the clutter (well she has always been the absent minded professor cliche), the inability to remember that we went shopping this summer...she is there and i am here and she is very very very proud and i don't know how to fix it. i just want to fix her and i can't. where do i begin here?
0 likes • 4h
I’m so glad you found us and were brave enough to write this. You don’t need to organize your story, read everything here, or figure out what comes next today. I hear how afraid you are. And being a psychotherapist doesn’t make this any less frightening, this is your sister. You said, “I don’t know where to begin.” But you already have. You’re paying attention. You’ve helped her agree to see a doctor. You and your husband are helping protect what matters to her. And now you’ve reached out to people who understand. That is enough for today.
How to Use This Community
Welcome First, take a deep breath. You do not need to read everything, watch everything, or figure everything out today. Caregiving is already asking a lot of you. This community was designed to help you find clarity, support, and practical guidance one step at a time. Start Where You Are Every caregiver's journey is different. Some members are just beginning to notice changes in a loved one. Others are navigating complex care needs every day. There is no "right" place to start. Use the Caregiver Roadmap to identify the topics and resources that feel most relevant to your situation today. Focus on What Helps Right Now You do not need to learn everything about dementia at once. In fact, trying to do so often creates more anxiety. Instead, ask yourself: "What is the biggest challenge I'm facing right now?" Start there. One helpful insight today is more valuable than information you won't need for another year. Ask Questions One of the most valuable parts of this community is the collective wisdom of caregivers who understand this journey. If you're struggling with a behavior, a difficult conversation, a family challenge, or simply feeling stuck, ask. Chances are someone else has experienced something similar. Learn at Your Own Pace Some members visit every day. Others check in when they need support. Both are okay. This community is here when you need it. There is no falling behind. Share What You're Comfortable Sharing You never have to share more than feels right. Some caregivers find comfort in telling their story. Others prefer to learn quietly for a while. Both approaches are welcome here. One of the hardest parts of dementia caregiving is feeling like no one truly understands what you're carrying. We created this community because caregivers deserve practical guidance, compassionate support, and a place where they don't have to explain everything before being understood. We're glad you're here. Robin & Donna Quick Start Checklist Watch the Welcome Video
1 like • Aug 12
@Dee dee Lee ty so much for that feedback
0 likes • 4h
@Angela Aiello Oh, no, you don't have to grow up and you definitely don't have to watch everything. This isn't homework. Take what feels helpful today and leave the rest for another day. We'll still be here when you're ready.
Start Here- Introductions
Before you jump into the lessons or explore the community, we'd love for you to introduce yourself when you're ready. You don't have to share your whole story. Just tell us your name, who you're caring for, or even one thing that's been on your mind lately. You'll quickly discover that you're among people who understand.
0 likes • 4h
@Angela Aiello I’m so glad you found us and were brave enough to write this. You don’t need to organize your story, read everything here, or figure out what comes next today. I hear how afraid you are. And being a psychotherapist doesn’t make this any less frightening, this is your sister. You said, “I don’t know where to begin.” But you already have. You’re paying attention. You’ve helped her agree to see a doctor. You and your husband are helping protect what matters to her. And now you’ve reached out to people who understand. That is enough for today. You don’t need to “bone up” before you belong here. When you’re ready for information, we’ll help you find it. When you just need somewhere to say, “I’m afraid,” you can do that here too.
0 likes • 4h
@Angela Aiello And I hear you on the pushback. That can be one of the hardest parts when you're seeing things that need attention while the person you love isn't ready, or able, to see them the same way. You don't have to solve the doctor, the car, the finances, and the future all at once. Especially not today. For now, I think I'd give both of you a little room to breathe. There will be time to work through the practical pieces one at a time.
Once Change Challenge: Answer the Need, Not Just the Question
This week we addressed Repetitive Questions, statements, stories: Monday- understanding why repetition happens; Weds- observing the pattern and underlying theme and today: Changing one response or cue. Examples for your response or cues can include: - reassurance phrase - visual schedule - written note/card - clock/calendar cue - snack or movement break - familiar object - transition routine - consistent short answer Instead of re-explaining the whole day every five minutes: Try “We’re staying home today. You’re safe. I’ll let you know when it’s time for lunch.” Your Challenge today is to Choose one repeated question and create one consistent response or cue that addresses the underlying need. We'd love to hear what worked for you...
Once Change Challenge: Answer the Need, Not Just the Question
1-10 of 75
Robin Helm
5
197 points to level up
@robin-helm-2617
Occupational Therapist & Cert Dementia Care Specialist helping caregivers find hope, community & practical tools to thrive on the caregiving journey.

Active 2h ago
Joined Feb 17, 2026
Powered by