What to Expect with Late Stage Dementia (My Experience)
Has your loved one been recently diagnosed with dementia or if your in the middle stages of dementia are you wondering, what's next?
The unknown can be scary especially if dealing with this kind of disease is new to you.
I'm going to share with you 3 things you can expect with late stage dementia, what you can do as a caregiver and my personal experience with hundreds of late stage dementia patients so that you can feel less scared of what is to come. (plus a heartwarming story at the end)
Whether you plan on caring for your loved one at home until their dying day or planning on placing them, it is good to know what to expect and what you are taking on.
1st thing to to expect
Late stage dementia can be as short as a few weeks or can go as long as several years depending on your loved one.
I've met people with lewy body dementia for example who got to the late stages pretty quickly. It wasn't uncommon for those folks to have family members comment on how fast they declined.
On the flip side there are many families of alzheimer's patients that talk about the years they've had to take care of them.
Neither of these are a hard fast rule, just what I've seen the most often at my job in the therapy department of a psych hospital for older folks.
Different diagnoses can give you differing clues on what they likely timeline is but the truth is, everyone is very different and exact timelines are difficult to determine even for medical professionals.
Consulting your loved one's doctor or specialist will be the most personalized information you can get on an estimated timeline.
I also found an article for you outlining more exact timelines if you're like me and you want to see the numbers. https://www.dementiacarecentral.com/aboutdementia/facts/stages/
2nd thing to expect
Late stage dementia folks need 24/7 care and full assistance with things like eating,walking going to the bathroom.
It is a ton of work to take on to be a 24/7 caregiver. Neither camp of caring at home or placing them in long term care is wrong.
It's all about what you can handle. I've seen on the support group facebook pages a lot of guilt associated with placing late stage dementia loved ones.
My two cents is that it in a hospital or long term facility, it takes multiple people and shifts to care for late stage dementia folks.
If you promised them years ago you'd never let them leave home and you end up doing it anyways let go of the guilt! No one really knows how hard it is until you're in it.
If you need help and have to place them, you aren't a bad person, you're a human with limitations and that's ok.
What to expect 3
They connect with you and the world through their senses.
At this point, late stage dementia people have lost their ability to communicate with the outside world.
Ways you can help them continue to experience joy and be with you are:
Playing their favorite music
Rubbing lotion on them
Brushing their hair
Having them sit outside in the sun
Anything sensory related
Despite the challenges there is hope. I know it because I have witnessed it.
My favorite story from my work is with a late stage dementia person.
This lady couldn't talk anymore and would mostly scream. After listening to her for several hours, my coworker started to sing next to her to try to get her to stop.
To our surprise, she stopped screaming and sang with her. I then decided to test this to see how far it could go.
I started singing "Besame Mucho" (shes spanish speaking) and to our astonishment, she finished the song WORD. FOR. WORD.
Moral of the story, dementia may take our loved ones ability to communicate and understand but it can never take the true essence of who we are.
Conclusion:
Yes, it is overwhelming to care for someone who is wholly dependent on you but after reading this, I hope this gives you a better idea of what to expect with late stage dementia.
Knowing how long they will be in this stage, what it looks like day to day and what you can do to make your loved one's life still be a good one will help you make decisions that are right for you and your family.
If you want more tips and strategies grab a free copy of the dementia success guide here.
Share in the comments your experiences, what you've found to be the most helpful or any questions you have.
I'll help you further to the best of my ability or point you in the right direction of someone who can.
