Live-in/Waking Night Carers Requesting Sedative

LewyDementiaCarer

Registered User
Mar 5, 2024
84
0
Greetings all.
Myself & my husband care for a late-stage lewy-body dementia patient in her home around the clock 24/7.
She is bedridden (can not walk or even bear her own weight, and has not the strength, balance nor coordination to even stand).
We have her in a fairly stable routine (as much as you can) with changing, cleaning, drinking thickened liquids, eating soft foods, sleeping etc.

However, given a recent more dramatic decline, she is now on occasion refusing changing/cleaning (due to exhaustion), or trying to climb out of her bed during the night (it's a hospital bed with air mattress, safety rails etc) because she thinks she can walk. And she actually managed to climb out the other night, ending up on the floor, when her son was here taking care of her.

We have spoken in depth with her family & Dr. but to date they have only prescribed an antipsychotic, (which we are hesitant to use, due to the high risks associated with LBD). And so we now are looking into options for a mild sedative when needed. We are not looking to send her to sleep, but simply relax her if she is too agitated to be cleaned/changed, or trying to throw herself out of bed in the night repeatedly.

Her Dr honestly seems a bit lost with the disease, so I'm wondering if anybody had any success or advice regarding mild sedative use in late-stage Lewy Dementia that we can ask the Dr to prescribe or look into?
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,589
0
Hello @LewyDementiaCarer and welcome to the forum. It is against the rules of the forum for members to give specific information on medication. I would suggest that you go back to the doctor and explain the issue to them. If they cannot help ask if they can refer the issue to the memory clinic for advice.
 

Ellie2018

Registered User
Jun 26, 2023
252
0
I asked our GP for advice about medication recently and he didn’t know so suggested that he contact a consultant and rang me a few days later with a suggestion perhaps you could ask the GP to get specialist advice. It was literally two days I waited.
 

Jessbow

Registered User
Mar 1, 2013
5,826
0
Midlands
Unlikely to prescribe sedative- it wont stop the dangerous activity, just make escaping the bed more dangerous.

Put the rails down and pad the floor to break the fall
 

Rayreadynow

Registered User
Dec 31, 2023
336
0
Very low bed ...Ask Dr about Mirtazapine prescribed at night low dosage can be used off label and has a sedative effect.
 

LewyDementiaCarer

Registered User
Mar 5, 2024
84
0
I asked our GP for advice about medication recently and he didn’t know so suggested that he contact a consultant and rang me a few days later with a suggestion perhaps you could ask the GP to get specialist advice. It was literally two days I waited.
Thank you for the reply, I'll ask the family to try this route. Unfortunately we are in Spain and everything here takes months to even get a response usually. But no harm in trying.
 

LewyDementiaCarer

Registered User
Mar 5, 2024
84
0
Hello @LewyDementiaCarer and welcome to the forum. It is against the rules of the forum for members to give specific information on medication. I would suggest that you go back to the doctor and explain the issue to them. If they cannot help ask if they can refer the issue to the memory clinic for advice.
Understood. Apologies, I was just hoping that someone had some experience with something that was successful for them. We are in Spain so it's not very quick or easy to even get a phone consultation with the Dr, and by the time it goes through specialists we wait months for a response. We are trying all avenues.
 

LewyDementiaCarer

Registered User
Mar 5, 2024
84
0
Unlikely to prescribe sedative- it wont stop the dangerous activity, just make escaping the bed more dangerous.

Put the rails down and pad the floor to break the fall
I'm not going to do that, she will likely break her neck at some point. I know they do this in the homes, but it will simply be a matter of time before she gets seriously injured if she tries to get up, padding or not. That's not acceptable to me. we are there to keep her safe.
 

JoannePat

Registered User
Jan 24, 2019
225
0
Hi Joanne, I'm down south also. Thanks for reaching out. Do they have a website, facebook page or something online? I can't get out much but would love to stay connected for advice & info. x
Yes! The website is https://adsgmijascostaspain.com and they are also on Facebook. The groups are twice a month (1st and 3rd Mondays). It would be so good if you could come along, but I know you can email on the website and get some help/advice.

Good luck!

Jx
 

Michellespain

New member
May 1, 2024
1
0
Hi all, I'm also in Mijas area and in desperate need of help with my mother. Any advice would be much appreciated! It is impossible for me to get the meetings that the Alzheimer's support group offer as they are in a morning and I run my own business, but it would certainly be good to be able to at least chat to each other and support one another as this journey is the most difficult I have ever had to walk
 

JoannePat

Registered User
Jan 24, 2019
225
0
Hi @Michellespain, its such a shame that you are unable to come to the meetings! They are so helpful! Where abouts in Mijas are you? We could certainly meet up if you just wanted a chat. There are so many opportunities for your mum. My dad goes to the Age Care Group, there is also Age Concern and even the Royal British Legion. Most of them offer voluntary drivers to pick her up and take her to the groups.

Jx