Wendy's story: living with early-onset dementia

[Williej25]

My mum got diagnosed with early onset nearly 2years ago now age 54 after a very long period of (what I think was) miss diagnosis at 1st. She has been 1 of the unfortunate that has NOT responded to the drugs. Just 1 year on and the deterioration is very noticeable!
Non of her friends have seen her in at least a year (sore subject that will open a huge can of worms for me) and family on her side are still indenial so don't input much help if any at all.
My dad is being very strong for me and I try to help as best I can around them and work but he is struggling! I don't know what more I can do as the time goes on. She is still too able for and form of help besides a PA but she is still in denial herself and refuses any form of help. She is angry, sad, she doesn't interact much, doesn't want to do anything at all to help herself besides sit and watch tv all day.
It's nice to here of other stories similar please as it feels like we've been delt with the very short straw with mum xx

Hi Sam, good to know you are here to share with everyone, lots of support and advice can be found on this forum. Has your Mum seen her g.p ? Antidepressants help greatly with anxiety and mood, will take a few weeks to work, that’s what I’ve found with my partner, he’s taking Sertraline and is much more motivated and most day he’s happy . The Memory Clinic also offer support & home visits and daily walks and other activities, will be a welcome break for you and your Dad I’m sure, my partner has made some good male friends with the same condition , his old friends don’t contact anymore/some family too, difficult I know but it’s their problem, not yours.
Just take one day at a time, my son is 23 and is now adapting to his Dad, it’s difficult but we try to go with the flow. Lots of love and keep posting Sam x

 

[Alyson W]

What an incredibly positive outlook from Wendy, although her memory was failing she seemed to still have lots of cognitive skills and awareness. My brother was diagnosed 2 years ago with early onset dementia, he was 61. He lives in Brisbane but has no family in Australia. Fortunately he has some great friends who I have worked with to get him into supported accommodation. Trying to learn about a completely different health and social care system has been a huge challenge!! I visited him in July, it was both lovely and heartbreaking to see him ( Covid restrictions meant I couldn’t travel to Australia any sooner). We had a lovely Xmas day planned for him but he has just tested positive for Covid so it will be another Xmas on his own ☹️. His illness is much more advanced than Wendy’s was in the video, he has lost any initiative to do anything for himself except switch on the TV! His personality is still intact however, and the team supporting him are amazing, so there are some positives!! Sending my support to all those caring for family and friends with this cruel disease, my dad had Alzheimer’s, so we know what lies ahead.

 

[PetAng59]

HI my husband was diagnosed with early onset alzheimer's in July 2019 at the age of 59, he is now 63 and is in the final stages. Right from the day he was diagnosed he just gave up and let the disease just take him. He would never discuss it and when I asked him about his feelings etc he wouldn't admit to feeling anything. I have no idea what has been going through his head, I worked out at one stage that he was having alucinations and soon after he started getting aggressive with me so he had to be moved to a care facility. Talk about person centred care, what a joke! He had delirium and they did nothing, he slipped in his room due to shredding his pad in the night and broke his hip. (unwitnessed), was in hospital for a week then returned bedbound the next morning he got himself out of bed and was hobbling about un aided because he refused to use a zimmer frame so they just left him to do what he wanted. Within 3 weeks he had 3 more falls 2 of which were unwitnessed and another broken hip! He was hospitalised for 2 weeks then went back to the care home where myself and my daughter gave him 1-1 care from 9am - 8pm otherwise he would have been left on his own bedridden and delirious. After 2 week's I decided he would be better cared for at home, I have a good care package in place and He is still bedridden now 3 months later. All he does is sleep. His leg muscles have wasted away so there is no chance of him ever getting up. I have to say that this has been such a miserable roller coaster ride for the whole family I can't even reminis with him about our lives together because he just doesn't engage. I thought I was prepared for what was to come as I am no stranger to dementia patients but boy was I wrong. The annoying thing is that when ever I researched for information it was all about dementia and the elderly, I couldn't find anything about early onset alzheimer's. It's about time this disease was given the recognition that it deserves, it is no longer just an elderly disease, its happening more and more to younger adults.

 

[rmorgan]

My mum is 60, she retired at 55 now I think back their was very subtle signs her cognitive skills were declining hence why I think she retired early even though she won't admit it. We're now at the stage we're she looks fine she can go about her day. But paying bills or using her phone or laptop she can't really do anymore. She sold her house to move closer to family and I thought maybe she will go back to the way she was with less stress. But now family are questioning if she could live on her own. She originally had a assessment with the memory clinic 1 year ago which said it was not dementia but probably a learning disability with shutting down when faced with issues she feels are difficult. She was suppose to return for a 6 monthly check up to asses symptoms but she didn't go.

She watches alot of TV has no interest in learning new skills or trying to keep the skills she already has. But she still is active. But her speech is getting worse in terms of missing words out and her writing is more like a child's.

She has another assessment with the memory clinic and I feel they are going to change to say it's dementia.

 

[Bevhar]

Just what the media needs a look at some one getting irrespective of the illness, I assume the Video is very recent , if yes well its almost 2 years since Wendy’s diagnoses and she has obviously accepted the diagnoses and got to grips with having to adapted and be positive to overcome the disability brilliant long may it continue Wendy , with that attitude no reason Wendy can carry on independently for years & years , I am now in my 16th year and going stronger and stronger

That is wonderful 16 years & doing so well My husband is waiting his brain scan results at the moment I’m a mess he’s the love of my life my rock he’s everything to me It’s so heart warming hearing of people doing well My husband is a positive person so if he has this hideous decease i
Know he will do whatever it takes