dementia

Zoom “When Dementia Knocks” Presentations: Tell Me What You Want and I’ll Do My Best!

Hi friends!

I want you to know that I appreciate you. Whether you found me recently on social media or starting following me when I started writing this blog in January of 2015 (oh, wow, back when I was in my 30s!), I am flattered that you tune in every Monday morning to see what I have to say…even though sometimes it’s just a ramble with little direction and an occasional typo.

I am considering doing some free zoom presentations as a thank you gift for all the encouragement and support you have given me. This is not–at this point–a well-defined idea. In fact, I’m looking for you to shape it. What do you want to hear about? What are common issues you have as people living with dementia and as care partners? What times and days work best? Would you be willing to give me some feedback in the comments?

I can’t please everyone (God knows I’ve tried and failed), but it’d be cool to get an idea of how I could be most helpful.

This is a crazy time. Since my schedule is typically a bit more flexible in summer, I usually do a lot of dementia education presentations in June and July. Obviously, I’ve been grounded a bit this year. In some ways, I feel like my wings have been clipped.

It hasn’t been all bad. I mean, I just bought a stand up paddleboard and I’ve been out on the lake two days in row.

Yet, I’d be lying if I said I didn’t miss speaking engagements and dementia education sessions. I don’t know when life will get back to normal, but it’s about time I start launching myself back into long-winded and sometimes disjointed monologues about what we are getting wrong regarding dementia.

You gotta get back on that bike, right?

Perhaps planning a series of zoom presentations would fill that void. Tell me what you want to hear about.

I suppose I could put that stand up paddle board in the garage for a day or two.

 

 

11 thoughts on “Zoom “When Dementia Knocks” Presentations: Tell Me What You Want and I’ll Do My Best!”

  1. I would love to get your input on fall prevention and the advantages/disadvantages of chair and bed alarms in a facility. I know the director of my mom’s facility has been struggling with this issue because they have so many residents in the 14 person memory care house who don’t remember that they can’t walk. They regularly try to get up from their wheelchairs or out of their beds and often fall straight to the ground, so the alarms seem like the only option other than sedation. However, the staff gets so desensitized to them, there are plenty of times (pre-COVID, when I was actually inside the building) when I was the one who attended to the resident who was trying to stand because no one else was alarmed by the alarm! The director and I met to discuss the pros/cons of doing away with them altogether (she knew I would be objective since my mom isn’t someone would be affected), but the families of those who are frequently trying to stand didn’t feel comfortable taking away those safeguards. I would love to hear more about best practices in other facilities! Thanks so much. Zoom presentations are a great idea!

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  2. How about when dementia knocks you on your butt in disbelief because your mom has had a complete personality change. I constantly feel guilty because when I visit, my impulse is to run away, far, far away. My mom is mean and very suspicious. She is hateful to my dad on a daily basis. They have 24/7 caregiving and are in their home which is a blessing but sometimes I wonder if it would be better if they were separated. My dad is so loyal and loving. She makes him cry often. And so I need help managing my emotions and doing my best when I am there (which is several times a week). I feel so guilty for having these feelings.

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  3. I want to read about how the survivor of dementia moves on after losing the dementia victim. What are your thoughts on starting a new long term relation, the fear of engaging dementia again.

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  4. Yes, this is often a desperation move. My hubby turns 80 on Sunday, and tomorrow we are moving him into a Memory Care unit near us. He has had mild dementia for about 3 years. Doesn’t drive. ETC, ETC. 2 weeks ago he fell down 12 stairs, broke 6 ribs and got a collapsed lung. This happened sometime before 10:30 PM. I was not feeling well and was asleep on the bed. I am on heavy drugs (herniated disc, needs surgery ASAP). He did not tell me until 3:30 AM, when he woke me up and asked me to turn him over. I was groggy (!) and asked why. Then he told me. I reacted as one would expect a good wife to do under these circumstances. He said I am fine I do not need help or 911 or anything else..But by 6AM he was in pain (grimacing, wobbly, angry) . 911, hospital for 6 days, then rehab. Rehab is just for physical not dementia. Rehab place said that he had met their criteria for discharge, which are eating on own, getting in and out of bed, toileting). However, he did not change his clothes or shower (despite their offers of assistance) for 4 days. I called it to their attention. Again, I realize that they deal with injuries and illnesses, not forgetfulness or dementia. Since I am having surgery soon, I knew I could not care for him at home. Needless to say I am very unhappy to have no other recourse than the placement, due to my weak health and his dementia. Plus he has balance issues, and falls and doesn’t tell anyone. You probably can see this picture. He has a PhD from Harvard, and even in his state can speak very impressively on numerous subjects. I must say that nearly all the intellectual resources I can muster and apply to dealing with this situation have come from my own PhD studies, and a LOT OF PRAYER. This is not meant to be a brag, but to say that all the education in the world will bow before the monster that is dementia. And yes, add all the restrictions of Covid-19 to the mix.

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  5. Anything you can offer towards reducing the stigma of residential care – much like the stigma of hospice – these services exist to meet intense needs. Is there anything you can do to encourage folks to confront the “I never want to be put in a ‘home'” beliefs, and to consider that moving into an environment where dementia is no longer a danger, an embarrassment or a daily challenge might make for more comfortable living?

    There are good residential settings and not-good residential settings. If a family starts the process of considering residential options early on, fairly openly, then there can be a choice. It’s when things are left until everyone is desperate and falling apart that they are forced to take what’s available, and then feel awful about it.

    This is the next campaign – first, Alzheimer awareness, now, the dignifying of residential options for those living with dementia.

    Thanks for your energy and interest in all this!

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    1. I could not agree more about the stigma surrounding residential care! I try to write about this frequently because it makes me so dang angry! (Also, I once read a stat that 70% of all nursing home choices are made in crisis.)

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  6. Hi Elaine,

    That would be great. I would be interested in anything that you could cover in regards to helping people with dementia to maintain their functioning and independence – in particular, mobility and communication.

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  7. More in depth conversations on caregiver self care -how essential it is for the long haul – asking for outside help. Also drumming home the real gift in-home hospice can be – getting over the stigma – the real help that is offered to both LO and the caregiver.

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  8. I would be interested in learning more about the gait of a person with dementia. I know think my dad had dementia far earlier than I realized. Also about diagnosing. We took him to his primary care doctor and he passed the screening test. He passed away in December and the cause of death is listed as dementia.

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