Say hello and introduce yourself

[Gosling]

Hello and welcome to this friendly and supportive forum.
I am so sorry to read this @Whirlygig . It’s tough , even if you were half expecting it, and at such a young age.
You have come to the right place for sound advice and helpful suggestions. Members here really do want to help, and there is always understanding to be found here.

 

[LynneMcV]

Welcome to the forum @Whirlygig - it can be such tough going when someone receives a diagnosis at a young age. My husband was 58 when he was diagnosed and had shown signs a good few years before that.

I received great support here and found the Younger people with dementia and their carers area particularly helpful. Perhaps start a thread there when you are ready?

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[DolauMan]

Hi from Wales and fighting social services on behalf of my partner with regard to her fathers care care home fees. He has early onset dementia though that was diagnosed several years ago. Mainly seeking advice on what the services can and cant do legaly with respect to his finances and obtaining documentation with deputyship

 

[Kevinl]

Hello All. My wife has just been diagnosed with early onset AZ she is 55

Similar situation years ago, the site here has been a great help to me over more than 10 years now, keep posting and search function on here is good too for specific issues.
K

 

[northumbrian_k]

Hi @DolauMan and welcome to Dementia Support Forum our friendly and helpful community. I am sorry to hear about your situation. Financing of appropriate care options can be tricky, especially where one doesn't (yet) have authorisation to manage a person's affairs and they are no longer able to set up Lasting Power of Attorney. Which I guess is why Deputyship is being raised. I don't know anything about that but others here may be able to help.

These links may be useful:

Assessment for care and support in Wales

Read Wales-specific guidance for accessing care and support at home for people with dementia and carers.

www.alzheimers.org.uk

Deputyship for people living with dementia

Find out what it means to be a deputy for a person living with dementia in England or Wales, including who can be a deputy and what it involves.

www.alzheimers.org.uk

 

[Shirleyblue]

Hi @rachl999, and welcome. I'm new here too. Regarding your dad's medication, Aricept (donepezil) and Namenda (memantine), was he taking them as pills or in another form? I was wondering if he's having difficulty swallowing, as often happens in advanced Alzheimer's disease. Donepezil can be administered via a transdermal patch, while memantine can be taken in liquid form, avoiding the need to swallow pills.
If he's finding it hard to swallow pills, that would explain his refusal, as it would've been causing him anxiety. Donepezil and memantine are widely regarded as two of the very few medications that can do anything at all meaningful for Alzheimer's patients. Don't beat yourself up over stopping the medication. If it's only been a few days since they were stopped, try to encourage him to take them, but don't force him to, obviously. If there's a time of day when he's more lucid, it might be worth trying then, rather than at a fixed time of day which might not be when he's at his best.
If it's been more than a week since he's taken them, it would be best to get medical advice before starting again.
In any event, it's definitely a good idea have him on the medication in a non-pill format. Memantine is likely to help with his behavioural issues. Donepezil may just help him feel a bit more like himself, but if he can take it in a way that doesn't cause him any distress, then it's worth continuing with it in my opinion.
As for anti-anxiety medication in advanced Alzheimer's patients, I think the picture is rather mixed as you've already seen. A doctor would (hopefully) know more than a layperson like me, or at have access to the best clinical guidance.

I’m also new here, my OH has been diagnosed with very earl Alzheimer’s in Nov. 2023 and the patch idea may prove helpful to him in the future. Many thanks for posting this advice.

 

[Lorraine077]

I am new to this community. My husband is bedbound with Parkinson’s and advanced dementia. It’s only been 2 months since being committed to the bed.

 

[Louise7]

Hello @Lorraine077 and welcome, this is a friendly place with a lot of shared experience and where people understand. I'm sorry to hear about your husband, is he at home or in a care home? I hope that you have some support and help as caring for someone with dementia isn't easy, but you will find support here so if you have any questions, or just want to tell us more about your situation, members here are happy to help if they can.

 

[NocturnalRambler]

Hi, I am new to this Forum and have been helping to care for my elderly father who has been living with Alzheimer's for at least 3 years, on reflection probably a lot longer. We are lucky in that whilst his condition is challenging and frustrating at times he is content and mild mannered.

We do wonder to what extent his condition has been caused by a severe head trauma in 1967 - he was crossing the road when he was hit by a car and then by another. He was extremely fortunate to be taken to a hospital where a specialist brain surgeon happened to be operating on the evening of his accident. He spent more than 4 months in hospital with broken bones. His head injuries required a titanium mesh plate to replace part of his broken skull and as a result of his head injuries his sense of taste and smell were severely impaired and he suffered partial memory loss - he has no recollection of me and my siblings as infants.

Dad has no concept of day or night and until recently would regularly go out in the small hours of the morning and then complain that the shops were shut. We have been exceptionally fortunate to find a live in carer who is now in post, things are a lot calmer and he seems to be more settled as a result. Our biggest bugbear with Dad is him losing things, I tell his granddaughter that he is a magician, he makes things disappear!

We have numerous things in place to manage his condition. A TabTimer pill dispenser, great unless he smothers the unit with a blanket or manages to jam the unit and stop it advancing by getting the corner of a blanket stuck in the small dispensing aperture. Alarm on the fridge door as he constantly leaves it open, sometimes for hours on end. Ring devices, Cameras and Doorbell, to monitor activity and in some cases to talk with him or visitors. Tile devices on keys and in wallet to track lost items. Tagosi QR Codes on portable items he might lose.

Whilst his condition is frustrating there are also amusing aspects to it. The weird obsessions and the random things he does, he has topped up the sugar bowl with milk and water on numerous occasions, put random items in the fridge and the odd fantastical story about his day and what he has been up to.

Our focus is on keeping him safe, comfortable and content, living independently for as long as possible.

 

[Izzy]

Welcome to the forum @NocturnalRambler.

Goodness what an awful thing to have happened to your father. I’m glad he has you to keep him safe.

It’s good that you’ve found this forum, Thank you for sharing.

 

[Gosling]

Hello @NocturnalRambler and just a welcome from me too to this friendly and supportive forum.

Gosh, your poor Father has been through so much, and you as a family. At least you say he is quite mild mannered which hopefully is some comfort.
Do have a good look around the forums - there is lots of good information and sound advice here from members that really do want to help.

 

[Jennjmp]

My name is Jenny and my Mum has just been diagnosed - Dad died of cancer in October - so just feel devastated and like I’ve been hit by a truck

 

[northumbrian_k]

Hi @Jennjmp and welcome to Dementia Support Forum our friendly and helpful community. I am sorry to hear about your Mum's diagnosis, which must seem so much harder following on from losing your Dad. I hope that now you have found this Forum you will be able to get the support that you need to see you through. There's a wealth of experience and understanding here and our members are always willing to help.

 

[Gosling]

Hello @Jennjmp and welcome firstly to this friendly and supportive forum from me too.
I am so sorry to read of your Mum's recent diagnosis , all on top of the recent loss of your Dad. You will feel devastated, that's very natural. Your emotions will be all over the place.
I am attaching a link which you may find useful for information:

Understanding and supporting a person with dementia

Gaining a better understanding of what it is like to live with dementia can help you support someone with the condition to live well. We cover topics such as identity, changes in behaviour, and the practical impact of dementia on the individual and carer.

www.alzheimers.org.uk

This a very safe and good space, for information, sound advice, and understanding. Members here really do want to help.

 

[bonny123]

Hello My name is Bonny. I am a carer for my husband with vascular dementia. Nice to meet you all.

 

[Louise7]

Hello @bonny123 welcome to the forum, glad that you've found us This is a friendly and supportive group where people understand, and there's lots of good advice here so feel free to browse, join in with other people's thread, or even start your own thread in the 'I have a partner with dementia' section if you'd like to:

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

 

[LynneMcV]

Hi @bonny123 - it is nice to meet you too! We look forward to getting to know you and to help support you 🙂

 

[Hattie Ann]

Hello

 

[Izzy]

Hello @Hattie Ann and welcome to the forum.

Have a good look round - you’ll find a wealth of information and support here. Let us know a bit about yourself so you can get support. Perhaps start a thread of your own in one of the areas under the Support From Other Members area when you’re ready to share.

https://forum.alzheimers.org.uk/

 

[BethTH]

Hi! I’m Beth, and my brother and I are caring for our mother, who has dementia. She has some behaviors from stage 4 and some from stage 5. She lives with him, but he works out of town a lot, sometimes for several months at a time. So far, she is okay being alone at night, so I just go over there during the days, for 6-8 hours or so, seven days a week. Fortunately, I’m self-employed, so I can adjust my schedule as needed. My brother and I want to keep her at home and care for her with wisdom and compassion, but we are struggling with a few difficult behaviors, and I look forward to reading through the forums and hearing everyone’s advice. (We’re from the U.S., so I know the health care system and many of the legal issues are different; I hope that’s okay.)