How to help husband

PoAs can only be set up will the person living with dementia has mental capacity so it is a good idea to get themselves up early but not to activate them till necessary.

You could suggest that you both do them as you never know what's round the corner for either of you.

As far as driving is concerned, it is his reactions to the unexpected that might cause a problem - a child running into the road for instance. And, the DVLA will have to be informed if he gets a diagnosis.

Thank you all for your replies. I will look at all suggestions and see if they help in this situation. Unfortunately the thing he is most worried about is being told he mustn’t drive any more. A “professional” told him to stop driving after he said occasionally he can’t remember how to get to a place we’ve been a lot. I told her we all forget sometimes due to age but she wanted him to stop immediately! He drives perfectly well; I’m never frightened or concerned when he drives and a satnav solves most issues around where to go. I discussed LPAs with him a while back but he’s adamant he’s not ready to commit to that yet. It’s a waiting game to see where we go from here.

Macadia

I found this short read for you which is called Three Golden Rules and it explains how to communicate with someone with dementia. I read it just now and it is spot on. This page will answer your question: contenteddementiatrust.org/specal-method/three-golden-rules/

Yes,, it's not all doom and gloom. Its a journey and there are happy times, too. There are hundreds of types of dementia. Usually. the ones who suffer the most are the families, not the patients. Please always ask for help when you need help.

Very well explained, * Macadia*. When the Bodach kept asking to ‘go home’, it was the only way he could say he was afraid. Once I stopped trying to tell him he was home, and replaced it with, ‘ we’ll go when the rain goes off’, or similar, he became calmer, instead of more agitated.

I found this short read for you which is called Three Golden Rules and it explains how to communicate with someone with dementia. I read it just now and it is spot on. This page will answer your question: contenteddementiatrust.org/specal-method/three-golden-rules/

Yes,, it's not all doom and gloom. Its a journey and there are happy times, too. There are hundreds of types of dementia. Usually. the ones who suffer the most are the families, not the patients. Please always ask for help when you need help.

Can I also suggest anyone struggling with this disease to have a look here

playlistforlife.org.uk

It was started by broadcaster Sally Magnusson after the death of her mum, who had dementia, and they have had remarkable results.

I lost my own husband to early onset Alzheimer's/vascular dementia and frustratingly, it took years to get the correct diagnosis. Without a formal diagnosis it will be difficult for you both to get the support you will need.

People think it just affects memory, but it’s far more complicated and a doctor explained that it depends which part or parts of the brain are affected initially. It can affect mobility, personality and behaviour.

Make his GP aware of the situation, this will not be the first time he/she will have met this problem. Make a note of the changes you’ve noticed and let the GP know, it all helps with diagnosis. My own husband switched from tea to coffee and savoury food to sweet.

I would make getting powers of attorney (both health & finance) a priority. It may be easier if you suggest you both get them done at the same time so he doesn’t think you’re accusing him of having dementia.

Please look at Wendy Mitchell’s books. She suffered from dementia and I found her books invaluable in understanding how to relate to my husband and understand things from his point of view.

Try not to argue/take things personally, get upset, correct mistakes. It’s hard and I often had to take a deep breath, count to 10, let it go and smile!

Lastly, please get support for yourself, whether it’s from friends and family or from organisations like Alzheimer’s UK (they have a support line and information for carers).

Sorry second link should have been
www.ageuk.org.uk/globalassets/age-uk/documents/information-guides/ageukig47_caring_for_someone_with_dementia_inf.pdf

Just seen the post mentioning sundowning.
That is very hard to understand at first.
In the winter months as soon as we needed lights on in the house my H would expect curtains drawn and he would want to go to bed.
This could be as early as 5/5:30.
I had to go with the flow and get him in bed.
It became part and parcel of our life.
Expect anything can happen and you will be ready for it.

I have lived through what you may be experiencing and it is very hard but you will get through it, there was no other way in my mind.
Mt H stared showing signs around the age of 70.
A few short years and it was full blown Alzheimer’s.
We never used that word, to him he just had a very bad memory.
I dealt with it almost single handed.
I took him to day centres but he wouldn’t go again after the first time .
He then had a major stroke which considerably worsened his dementia and his mobility and I was permanently in with him.
I had given up driving so we were stuck.
He never got violent but was very stubborn and rather demanding, things had to be done the minute he wanted them doing.
He eventually was moved downstairs and the dining room became his bedroom and his living room to some extent.
I got respite care a few times as by then he wasn’t able to complain or really aware of his surroundings.
His mobility deteriorated and I had carers in to get him up, shower and dress him until I could no longer manage on my own.
He was then 82 and I 81 and exhausted.
It was with a very heavy heart that I got him into residential care.
Less than a month later he was diagnosed with cancer and died within 3 months.
I will never regret having him with me for as long as I did or making the best decision for myself when I could no longer cope.
We had been married for over 60 years.
It is not all doom and gloom we had happy times and our sense of humour, always present in our relationship, got us through.
I send my very best wishes to you both and hope that you will see a good few years yet.

One more bit of advice for you 26Ijustwantpeace2020, try not to plan duties or stimulating activities in the late afternoons or evenings. You might find that your DH's thinking is very clear every morning but gets a bit foggy as the day draws on. This is called "sundowning". Afternoon plans should be kept to lazy, calm and happy. I just agree to everything my DH says and the next minute, he forgets he asked. It's a lonely road. <hug>

It will become frustrating for both of you if you correct him or argue over a memory, as others have said the memory of somethings has gone.

Do not start a conversation with ‘ do you remember…” it will send him into a panic, instead start it with “I remember when..”

There are many useful tips on dementia sites.

So sorry that this has happened to you both.

I can’t better the advice given, my Mum was never violent, it’s not a given. Look after yourself too.

I can completely relate to Whiff's experiences. It is a horrific disease and you could easily be in physical danger at any random time. Reactions and behaviors are unpredictable. If there is no MRI brain scan then you won't know if it is Alzheimers, Dementia or Brain Cancer. Without knowing the disease, his GP cannot prescribe the proper medications to treat his illness. With my dad, in the early stages, when he was still coherent, I got a leaflet explaining everything about Dementia, told him that he had been diagnosed with this and that I would be there to help him with anything always. He was sad but reading the leaflet booklet helped him understand. It is very serious and not something your DH should ignore. My DH is due for that same test, too.

M0nica

Whiff your struggles with your own disabilties plus caring for your DH and mother, make me feel very humble and uncomfortable about how irritated I sometimes get with DH, whose problems are minor and not mind related.

Whiff I can relate to so much of your post, and agree with MOnica. The Bodach had only the beginnings of dementia when he died of cancer, but I could see the agression taking hold, but only towards me.
There is a lot of good advice from others, especially the ‘ connect not correct’ so please take care of yourself.

Shelflife and GrannySomerset.. what wonderful, sensible, compassionate women you are.. I am really touched by your posts..

Yes, getting power of attorney is essential because as the illness progresses the ability to make the decisions is crucial - on health and on finances especially. As DH became less and less himself I was able to put in place things like a stairlift, bath lift, ejector seat arm chair, etc which he would never have sanctioned and which helped keep him safe from falls. I bought in a carer one afternoon a week once the worst of covid was over so that I could at least get to the supermarket. Your own life gradually contracts, almost without you noticing, until there is nothing but caring left in it so start planning how you will deal with that. It’s so hard and I truly feel for you.

I understand your situation , my DH was diognosed in March . He refuses to use the word 'Alzheimers ' but is taking medication. Understandably he does not want anyone to know and that includes our AC. Dementia is so much more than memory loss, it is lack of judgement, poor decision making, change in personality, refusing some foods that have previously been enjoyed, not recognizing some people ( at times,) in addition to that the usual losing things , forgetting appointments..... and so it goes on. My DH lives in the moment, does' nt think of consequences and seems perfectly happy!! The Alzheimer's Society are there for you regardless of whether your DH will engage with them . We are in the early stages as and it is already difficult!
Do seek help and if possible continue your interests, keep in contact with your friends and don't feel guilty about taking yourself off for a walk or a shopping trip - treat yourself to a lovely lunch too. I try hard not to be impatient with him , I am not cross with my DH just sad and anxious about what the future will hold. When my Mum had dementia it was hard but I had my DH beside me, when she died I was devastated but my life picked up and went on as before .A DH with dementia is a different kettle if fish altogether, when the dementia progresses my life will never be the same again - I will be alone. For now we are managing and I take one day at a time, I hope you do too. Speak to your GP tell him / her your fears.
Have you a LPA ? If not I strongly advise you get one , I pressed for this prior to diognosis but when I knew things were changing! It is vital that if your DH gets worse you can step in and make decisions regarding his health/welfare. Thinking of you 💐

My mum had vascular dementia it’s a roller coaster of a disease and it left my mum with three distinct moods. She would one day be her gentle self but tearful about her surroundings a care home. She had days sitting watching tv or singing along to music. The worst mood was nasty and quite violent she would often strike out at carers and me that was the most upsetting.

My advice get all the help you can for your dh in your local area there will be day centres he could attend. He will need occupation and something to keep his mind active. You will also need support watching a loved one’s health decline with dementia can be soul destroying. I hope you get the support you need your dh will benefit and you will too.

Ijustwantpeace whatever the cause of your DH's dementia/incipient dementia, contact the Alzheimer's Society. They have knowledgeable people you can talk to on the phone and lots of help and advice.

Here are links also to the 2 AgeUK Factsheets on dementia www.ageuk.org.uk/globalassets/age-uk/documents/information-guides/ageukig55_at_home_with_dementia.inf.pdf

www.ageuk.org.uk/globalassets/age-uk/documents/information-guides/ageukig55_at_home_with_dementia.inf.pdf

Contact your local AgeUk as they often run coffee mornings and social gatherings for those with dementia - and their carers.

Both the Alzheimers Society and AgeUK will be familiar with the problems you face. They are not uncommon.

Whiff your struggles with your own disabilties plus caring for your DH and mother, make me feel very humble and uncomfortable about how irritated I sometimes get with DH, whose problems are minor and not mind related.

There seem to be several charities and day centres where I live offering groups and activities for people with dementia. I hope you have some locally that he may enjoy, and that would give you some respite.. I expect that your local library, Nextdoor or Age Concern would know

There are various charities that offer help and support, for you and your husband. This is a link to Alzheimer's UK about talking to someone who won't see a doctor and support you can get. Please contact them as it will help you feel less alone and helpless.
www.alzheimers.org.uk/about-dementia/worried-about-memory-problems/talking-someone-about-memory-problems

Everyone's experience of dementia is different and whilst there are horror stories there is a lot more, understanding, support (and medication) nowadays to help.
So sorry you are going through this, there should be local help too, please seek it out, support for you will be invaluable.

Not sure who Nedd is. I obviously meant need!

Some good advice from both kittylester and V3ra. Do speak to your GP who will be able to advise on support mechanisms.

My late father was diagnosed with dementia and he would he very frustrated and angry with himself and often others.

A calendar as a reminder of appointments and to record events is a great idea as is taking lots of photos - easy with a smartphone - for reference too and I do wish I had thought of that with my Dad.

Be patient with you husband but be mindful that if he has an infection his memory loss will be temporarily exacerbated.

There is loads of help out there - you just Nedd help to find it.