Friend´s husband shows signs of dementia, what can I do?

And research moves on all the time!

Poppyred

At present there is NO cure for dementia. It’s progressive and devastating. If there was a proven dietary cure then everyone would be on it wouldn’t they??

Just be supportive. X

..............but hope springs eternal

At present there is NO cure for dementia. It’s progressive and devastating. If there was a proven dietary cure then everyone would be on it wouldn’t they??

Just be supportive. X

The main thing is your friends are happy as possible and the best you can do is reassure.

My husband has early dementia and I wish people would stop telling me what I should do. I am not stupid and am doing all I can. All others are doing is adding to my distress.

Just a PS in case it might apply to the OP’s friend - something else I’d have loved when FiL was living with us, was someone to take him for a walk - he was still physically fit and active but no longer really safe to go out on his own - and so give me an hour’s blessed peace on my own in the house - peace from the pacing and endlessly repeated questions.
Of course poor FiL couldn’t help it, but it was extremely trying.

Except for dh at weekends, it never did happen.

I was so hoping you'd come along Izabella

polyester57 I can perhaps offer a different perspective, although I have not been able to read and remember all posts up thread. I have early Alzheimers diagnosed by an appropriate assessment process. I am unusual in that my professional background allowed me to virtually self diagnose. Luckily my current GP was a colleague some years ago and took me seriously. She referred me on seemingly assured I did not have problems. Assessment and brain scans showed I do.

So how is it for me now? Positives :Early diagnosis has led to me accessing services, support, attendance allowance, blue badge and a network of support. I have a support worker via the Alzheimers society (I am sure kittlylester will have given their details). I have POA, an update will, a DNR and advance directive, and I am marked as a DNA by the ambulance and paramedic services. My current husband attends a support group when running and we have both completed a living with dementia course that has enabled CH to network with other carers. I am on medication and all family and friends are aware of my diagnosis (why hide it?) I am pursuing interests I have never had the time/opportunity to do in the past and am currently painting and drawing.

Negatives well meaning comments about how to beat it. Comments on cures, diet, being 'dropped' by some friends due to their not knowing how to treat me. Being treated by some health professionals as invisible.

Advice from my perspective Just be there for your friends, offer support and respite and social opportunities. Do not interfere. Be non judgemental

As an aside - and I realise diet is a hot potato here - I personally find that a low carb diet (required for other reasons) helps to clarify thought processes and general alertness.

Whilst I sound and appear ok I can assure you posting here is exhausting now and I require ħelp of a loyal and trusted friend to do since CH's vision is failing.

I hope this has been helpful.

polyester I'm going to be blunt. There is NOTHING you can do, apart from being a supportive friend, which it seems you are.

Sorry, but it's their problem, to deal with in whatever way suits them. They are fortunate to have such a caring friend, but there is a fine line between being caring and supportive and interfering.

You have made suggestions 're diet etc, you cannot enforce them. Just carry on being a good friend.

Thank you polyester, I chose that one randomly, but she has done many more that you may find helpful. They certainly helped my understanding. American yes, but it's a universal situation. I lost my Dad to vascular dementia many years ago and the learning would have been so helpful to me.

They're blessed to have a friend like you.

Thank you, GrannyLaine, I have watched the video, it is very American, but definitely helpful.

Just to mention, you need to have a proper diagnosis and be in receipt of Attendance Allowance (or at least be eligible for it) to qualify for the Council Tax relief.

They can get a Benefits check from AgeUk and if they want to apply for Attendance Allowance it is a good idea to get help from AgeUk filling in the form -- they know the buzz words to use.

AgeUk have loads of information on their website.

There’s nothing you can do, just support them if they need it. They have to find their own way.

polyester57 you sound like a lovely lady and a wonderful friend to this couple. One of the best things you could do is arm yourself with good information that will help you understand the journey they have found themselves on. When my daughter was helping her husband come to terms with his grandmother's dementia diagnosis, she came across a series of YouTube videos by Teepa Snow. I would urge you to take a look - she is so knowledgeable but very humorous with it

www.youtube.com/watch?v=pqmqC-702Yg

Thank you all. Back off Pol! I needed to be told, and I am not joking. I was looking up diets on the internet and thinking of making a lentil, broccoli and nut thing and taking it round, in the hope that it might be a cure. Thank you for putting my feet back on the ground. I definitely need to take a step back and just be supportive. Btw we don´t live in the UK, so no local councils, but otherwise it all works about the same.

Diet does not make any difference polyester my mum had a wonderful diet no sugar no salt grew all their own veg ate very little meat and no processed food still had 7 dreadful years to dementia
All you can do is be a good friend and when it gets to that stage maybe sit with him while she goes out for a break that sort of thing
There are tablets that delay it but I wouldn’t want them if it was me my friend has been on them about six years now and yes it had kept her at a reasonable level but she’s a shadow of herself very vacant grinds her teeth and just smiles at everything if you told her you d just fell and broke your neck shed smile give a little giggle and say oh there is no understanding there I d prefer to go quicker rather than longer
There are stages with dementia I think there’s 7 and they each last a certain amount of time the first three you can stay at and never get any worse after that though you follow the steps back to babyhood the last stage is lying in the foetal position in bed (hearing is last to go)

Please don’t interfere it really isn’t for you to be ringing local councils

if he has been diagnosed with a severe mental impairment, they should be able to get the single person reduced rate for council tax.
if you want to do something, maybe you could ring your local council, and get details of who how to contact re this.
of course, do not reveal their details to any third party without explicit permission.

There is plenty you can do by continuing to be a good friend. Don’t interfere or try to ‘help’. You can’t. Just be there when she needs you.

Well said SueDomin

polyester57. What comes over in your post is how much your care about your friends and would like to help. There is a stage where your friends will be trying to accept the diagnosis and accompanying prognosis during which time they may be reluctant to discuss anything outside the two of them no matter how close you all are. What you need to do is go on being the stalwart friends you are, continue as normal as much as you can and take your lead from them. With the passage of time some friends disappear as the situation becomes more trying, and it is clear that you will stick by them. Be there to give your friend a break when she needs one and support but hold back on advice unless you are asked for it. My Uncle had Alzheimer’s disease but luckily did not become difficult or awkward. He remained the kind, gentle person he always was just that he was more and more forgetful, repetitive, and also very emotional, loving, a a bit weepy. The disease has a very wide spectrum. What the carer needs is loving, non judgemental support, to look after her DH in the way she decides. Missadventure makes a very good point. When you see your friend alone she may want to “escape” or she may want to offload. You might want to speak to Alzheimer’s UK for advice on how to be the best support you can. Take the lead from your friend. She is lucky to have someone as caring as you who is going to support them. ? for you all

Ah Misadventure, is it because behind that well meaning advice there's a faint suggestion of "This is your own fault" for not....

As a friend of this couple, your position, Polyester is to support them and not try to manage their lives for them.

My Dh and I are about seven years down the road of a similar situation with our closest friends. Always, we’ve done what we can to make their lives easier. Before the disease progressed (our friend is now in care) my Dh would look after him to allow his wife to do things she needed or wanted to do. I try to be a listening ear to my friend, whether to laugh or cry. If she asks my opinion on something or wants information, I’ll help her with that but I’m not going to be making suggestions that are not going to work, which simply heap more pressure on them.

Fwiw, these friends have lived blameless lives, doing all the right things re diet, smoking, alcohol etc but early-onset dementia still set in and changed their hoped-for retirement beyond all recognition.

Please don’t suggest ‘healthy eating’, my MIL was a very fussy eater all of her life, handfuls of sunflower seeds, fresh fruit and veg, only ate chicken, never ate cakes or biscuits.
After she became ill with vascular dementia all she would eat was chocolate, everything else was put into the bin, even though she had chosen from a menu for the week. If there was no chocolate, she refused to eat.
After she went into the care home she was eating ‘normal ‘ meals, in fact she practically ran (with her walker) to the table, however, she insisted that they were trying to poison her.
It’s a sad road to travel.

It's strange you should say that, because I feel a bit anxious thinking about all the people who knew someone, who's brother in laws ex wife was cured by (insert miracle)