One of my Mom’s dearest friends wrote me a message recently and said “I hope your Mom’s condition is getting better”. With all due respect and love, there is NO getting better with Dementia, it’s a progressive disease. And, when you add in Hospice which is supposed to be a 3-6 month program providing care for the actively dying (Nancy is on month eight and was recertified by Hospice this month for another six months), there’s even a greater chance of NOT getting better.
In fact, Nancy has lost four pounds since December 2022 (it’s now January 2023) and she’s completely vacant. From here we go to organ failure, probably a coma, or my worst nightmare, a fall that causes severe damage and per Nancy’s Advanced Directives, we do not treat any of that, other than mitigate pain/Hospice care.
For two years I have struggled to understand this beast of a disease called Dementia and with that, the best care to provide Nancy – from assisted living in 2021 to rehab from different incidents, to memory care, she’s experienced it all.
Here’s what I think is most important to understand as a caregiver for an elder with Dementia.
- There are different types of Dementia, and for my purposes at this point in Nancy’s advanced state, it really doesn’t matter to me what type she has (which is mixed FYI).
- This disease isn’t about them. They die a bit more every day from this brutal disease. This is about you coming to terms with it all. It is YOUR disease and it is killing you – body, mind, and spirit – slowly too. At the end of the day you have to make peace with EVERYTHING – from the guilt, to the choices you will be asked to make, to how to be compassionate toward someone who you may find yourself struggling to love – especially when you get triggered by the mental illness component – or when they don’t know who you are at all anymore. It all sucks and somehow you are now the full-blown adult who has to wake up each morning and dig deep to find some way to manage all of the issues, emotions and complications that come up.
- Dementia, like grief isn’t linear. There are stages, but your Dementia-person may move in and out of the stages and there are times where you aren’t sure where they are anymore. If you step back and look at the patterns, the ups and downs, the big picture – you may have more clarity on what you are seeing and what could be coming.
For example, Nancy would be non-responsive, she would have health issues like a stroke, and then for some reason she would bounce back and bit and hold a 30-minute coherent conversation with me. Then she would become a bit more delusional and defiant – trying to get out of where she was, telling me she wanted her car keys, talking about things that were from the distant past like it was yesterday. She would even get belligerent with those who tried to help her. From there she would try to stand up in her wheelchair, try to walk, and then she would fall. The cycle kept repeating over and over and there was nothing that truly helped other than the ‘knowing’ that she was in her cycle. I call it my ‘cycle of doom’ and as of the last couple of months, her highs and lows have moderated a bit so the defiance and behavior issues still come into play, but with much less force and duration. She’s more of a category 1 storm instead of what we used to call her: Hurricane Nancy Category 5. - It may feel like you are all alone as you manage a dementia patient’s care. I’m learning through all of the support I’ve gotten from the different Facebook groups (Dementia Caregiver Support + Activities for Challenging Behaviors Community) and interactions I’ve had with others who have gone through similar situations, that I am definitely not alone.
Beyond the social media / friend support, I’ve learned invaluable lessons this past year:
Hospice has been my best friend through it all. I’ve worked with a few different Hospice nurses, PCAs, their social worker, and their chaplain and I’ve been so impressed. Basically when Nancy was falling repeatedly and her vitals were out of control, I called a Hospice group that someone recommended back in May of 2022. The lead hospice nurse came to visit with Nancy and me and once admitted, they took care of everything. They got her a hospital bed with semi-rails to help her from falling, they inspected her walker and wheelchair, reviewed her medications to streamline, they met with the Memory Care’s nursing team and staff to review Nancy’s needs and best practices for her care, and they went multiple times a week providing everything from compassionate care to showers to an extra set of hands and eyes – which was invaluable since Nancy’s Memory Care was struggling to keep things safe and staffed. I have used hospice twice – once for my Dad and the service was hideous and it was incredibly traumatic how things were handled. Gentle Shepherd in Central Virginia is the best and I wish they were the standard for all Hospice programs.
Virginia Department of Social Services (DSS) was brought in when a friend saw what was happening to Nancy. She called for an investigation in September and in December we learned that the Memory Care facility was in violation of keeping Nancy safe among other issues. DSS continues to be a huge advocate for positive change in Nancy’s world. Each State has it’s own DSS. Do some research on the services provided – from advocacy to financial support / guidance.
Department of Aging is an agency I just learned about through another friend. I have reached out to their Ombudsman to see what we can do to continue to support Nancy in her challenging situation. I will update more when I know more. Once again, this is a State agency.
Social Workers are INVALUABLE for the most part (had a few duds) – whether they work with the hospital, Hospice, or are independent. The Social Workers have helped identify placement from rehab and nursing care to identifying other potential memory care facilities or such. The Hospice Social Worker even calls me every week or so to just let me talk things out or even vent! Can’t be more appreciative for their guidance and support.
I will be posting more info. In the meantime I’m happy to connect you to resources and help identify what’s available in your State. Don’t hesitate to reach out… you are not alone. And, if you have other resources or suggestions – please feel free to share!
Wishing you and yours well as you work through all of this.
Take care, Colleen
Struggling with life, with work, with being? 