palliative care and hospice care for dementia

Hey there Careblazer! Welcome back to Careblazers TV, the place where we talk about everything dementia. If you are caring for a loved one with any type of dementia, such as Alzheimer’s disease, Lewy Body Dementia, or vascular dementia, then this is the place for you! I post a video every Sunday on the topic of dementia caregiving.

Today I talk about 2 very helpful approaches to care for someone with dementia. Hospice care and palliative care. I go over the differences and explain that even if your loved one does not qualify for hospice care, palliative care can be a helpful addition.

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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. I spent the last 13 years working in a large hospital setting and I had a strong pulling to help more people than is possible for me in a work day. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacaregiver

[janeclements]

As a now retired Gerontologist & still volunteer advocating for the elderly I Thank You for your descriptors. Both are such a vital part of life’s journey & my wish that ALL are pain free, oxygenated, listened to & feeling safe!

[Kimberleighkole]

I follow on FB, I just brought this topic up there, these conversations NEED to be had at diagnosis w the family. Otherwise totally healthy but mentally, devastated people need help too

[boz]

Thank you for you videos! I have watched dozens of them. Was taking care of my aunt since January 2021… She just passed on 2/24/22. Your vids helped me so very much ! I had no idea what I was doing but learned so much from you. Patience is one that I really worked on ! Taking some time for yourself was another. For the last couple months, we were so fortunate to have our family and some hired night shifts come together for 24hr care ! We shared your videos and talked about the topic you spoke on. So just know, your videos really do help people learn and understand so many things about this terrible disease. Thank you again so very much for taking the time to make these videos!

[melanieopperman]

Thank you for explaining these matters so clearly and calmly.
I didn't realise these two levels of care were different. You are so kind to discuss these difficult issues.

[davidkendall]

My wife had hospice care for over two years. My hospice provider said that 6 months was not their criteria and that they actually had patients beyond 2 years. Insurance considerations are important. Some hospice are changing their name to remove the word "hospice" because it freaks people out. I'll take hospice care any day. The word "palliative " makes people feel better that it's not hospice when in a practical sense it's not much different. My hospice did not recommend withholding any medications.

[wandastatton]

Thank you so much, I didn’t know there was a difference: you really help me to understand, ,

[lesweizman]

im not going to tell a long story, but i think when i was told by my father's primary that he was going to be placed on palliative care...and then, when i put him in hospice care at home, it was a mistake
he is now at end stage of life, with maybe a week to go

[barbaranelson]

Hospice wanted to take insulin away from my loved one even though she still recognized us and could ask for soda because she got a uti for the 6th time they said if we just stop insulin she would pass in 3 to 5 days she was type one for 50 years it was like let’s hurry this up but to me there would have been difference in that and suffocating her I would never re omens this unless I just had too

[missdemeanor]

Who provides palliative care. Who do I contact. Is there is a cost. We have private insurance and he’s on Medicare.

[keng]

Shout-out to Haven Florida...my wife is way better off....

[nancyguy]

Is it a bad idea to have many old b&w pictures on ancestors where the patient can see them often?

[toryberch]

Natalie, can you have the same team for Palliative and Hospice care? I just got diagnosed with Lewy body dementia
I've had Parkinson's symptoms for 7 years
now and I've got cognitive decline. I'm still functioning ok, will I qualify now for Palliative care? I have a Drs appointment coming up for another issue. Should I address this now or should I make a separate appointment addressing this new diagnosis

[JD-odjn]

My HWD has multiple severe other health problems and should have Palliative or Hospice now, he is in late stage kidney failure, decision made years ago no dialysis....problem is getting support to help moving forward. HWD has daily severe pain and "abusive anger" outbursts towards me and healthcare providers. No one wants to work with him

[glennjohnson]

Hi there. My comment is in regard to a recent development in the case of my 81 year old mother with Alzheimer's. Do you have any videos about dementia patients who suddenly begin openly masturbating, regardless of present company? For background, I'm a single man who suddenly and unexpectedly became primary caregiver for my 81 year old mother about 1.5 years ago. She's had relatively minor memory issues for years and has been on Aricept for some time. But her condition has really advanced in the past 6-8 months. In that time (to give you an idea of her current state) she has lost her ability to hold a conversation or even express a coherent thought at all. Her verbal expressions have become collections of random, seemingly unrelated words. And as I mentioned, she's now exposing and touching herself sexually with no regard for who sees. I know not to make her condition about me and my feelings, but gosh is it disgusting. I guess I can address my trauma with a shrink later. But right now I want to ask if you have any advice for how to deal with the situation. My gut feeling and my fear are that you are going to tell me to learn to live with it. But I thought I would at least put it out there into the world to see if you or anyone might say anything helpful. No matter whether you give advice on this topic or not, thank you for the content you make. We dementia caregivers are out here in the trenches and just knowing someone understands and acknowledges the sacrifice it takes does a world of good. So again, thank you.

[rickneenan]

My husband had hospice care for 2 years 3 months. They were truly great. Now my dad has dementia and his Dr is telling me he isn't suitable for hospice. He had an aorta replacement in May and hasn't been the same since. He has quickly declined physically and mentally. He is 87 so I'm at a loss as how to proceed. Any thought anyone?