Episode 6: Tips from our first year living with dementia
ฝัง
- เผยแพร่เมื่อ 15 ก.ย. 2024
- Welcome back! It's around a year now since Mark was first diagnosed with Young Onset Alzheimer's Disease. This month, we have a chat about how the year has been. We're also telling you about some of the things that we've found helpful recently as we learn to live with dementia.
ABOUT US
We're Mark and Heather and we talk about our daily adventures living with Mark's diagnosis of Young Onset Alzheimer's Disease. We're aiming to share information we've found useful, things we're finding challenging and any tips and tricks we come across along the way. Come back at the beginning of every month for a new video!
#positivedementia #dementiaawareness #dementia #alzheimersawareness #alzheimers #youngonsetalzheimers #earlyonsetalzheimers #dementiaparticipation #expertbyexperience
* Mark came up with the title "The Everyday Adventures of Dementia Man". For us, it's a way of seeing humour in a challenging situation. If we couldn't laugh at the absurdities that dementia brings, we'd never make it through. We definitely don't mean to belittle anyone's experience and we're not ignoring the big challenges that dementia brings. Sometimes it can be very sad and hard. But when we can, we're determined to get on with enjoying life and learning new ways to cope and thrive.
Thankyou for sharing your experiences and being so open...my mum has dementia and we cared for her at home for 4 years ...do you know you dont have to pay council tax when you have a dementia diagnosis ..we didnt find out for a long time .. me and mum enjoyed our times together like walks by the river and chatting to people ...sending best wishes xxx
Thank you for your lovely comment :) I'm so glad that you have happy memories that you can look back on. Yes, the council tax thing is important isn't it. Luckily the Alzheimer's Society put us on to that one. It took a while as our GP surgery wouldn't sign the form for free. (They charge £80 even though it's against BMA guidance!!!). But we got there in the end with the help of Mark's consultant. Once we eventually got Mark's formal diagnosis and PIP payment, it's amazing what opens up in terms of rebates and discounts. Thanks again for commenting - I'm sure your info will be very useful to people xxx
My husband was diagnosed almost at same time as you. [It took 15+ months, whilst uber slow investigation of a blood test result.l Consultant told us at diagnosis appt: "There is no support for you out there". I tegistered with Alzheimers UK, rec'vd loads of yet more reading material on top of piles from Memory Clinic, far too much to take in. Then after 2 months, a letter saying an adviser would contact us... but 5 month wait. Still waiting.
Sadly we could not have a family. We have no support except neighbours in an emergency. Our siblings died, nephew in Oz, niece a mega stressed NHS lead consultant with 3 teenagers. Rarely hear from her.
My husband is almost 80. I see his memory slipping more daily. He is unhappy, miserable, irritable all the time, difficult to deal with. Booked a short break in Cotswolds in May. He moaned non stop. Seeing a good weather 4cast ahead for South, I tried today to book 3 nights away in Dorset. Gave up, he was such a misery about it.
I have no idea how I will cope in time ahead. Lie awake often.
I hv subscribed to your videos. Helpful listening to you both.
Margaret
Hi Margaret - Heather here. Oh Margaret, I really feel for you. Such a difficult situation and I wish I had a good solution or answers for you. I know what you mean about being bombarded with all the leaflets and written information. We know that there's probably useful information there, but it's so overwhelming to take in and not very personal.
One thing that pops into my mind is the Admiral Nurse service provided by Dementia UK. They have a helpline on 0800 888 6678. I don't know where you live and whether they provide Admiral Nurses in your area, but it might be worth giving them a ring for a chat. An Admiral Nurse is there to help YOU as the carer. I found them good when I was caring for my mum who also has dementia. Might be worth a try.
It's so, so hard when it's your husband with dementia, especially when someone so close to you is irritable with you and grumpy. Even though we completely understand the reasons, it's really difficult.
I definitely suggest ringing the Dementia UK helpline and tell them how much you're struggling. Wishing you luck! xx
Hi look at Dr.Natalie for dementia on u tube she has a lot of hints to help... ask at yr gp clinic for help and there may be a local club for both of you...We looked after Mum for many years ..Dad also.. Mum is in a home now as she needed 24hr changing etc but she is happy there ... xxxxxi