How to help husband

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

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).

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 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.

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.

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.

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.

Ijustwantpeace2020 leave it too long and you will not be able to sort out an LPA except through the Court of Protection and that will pose severe restrictions on what you can do and spend.

We, and many other people set up our LPAs in our 50s, long before we expect to need them, so if anything the time is almost passed when you can set one up.

I get a feeling that you too are in denial about your husband's condition. A 'professional' (professional what) has told you he should stop driving. So he should stop. It is not just a question of losing his way and using Sat Nav.

What happens when he forgets and puts his foot on the accelerator instead of the brake and runs into someone and kills them? What happens when he confuses left and right and turns down a one way street with traffic approaching? What if he goes out alone and simply doesn't understand anything the Sat Nav says and ends up driving around hor hours not knowing where he is or what he is doing. You hear stories like this in the media regularly.

If he has been told by this 'professional' who has the authority to do so,that he must stop driving, then his insurance is no longer valid. Once again if he injures someone or is injured in an accident or writes off the car, then he cannot makee an insurance claim, even when it is not his fault and can be prosecuted for driving without insurance.

Many people in the early years of dementia can appear far more 'with it' than they actually are, I think your dH may be in that group. For your sake and for the sake of any innocents he could kill or injure. he must stop driving now.

Before my Dad was diagnosed one of the staff where he lives told me she was very concerned about his driving, she'd seen him pulling out of the gates onto the road without looking.
He'd already been referred for an MRI scan at this point so my husband and I told Dad we were going to take his car keys, just until we had the results.
(We wouldn't have given them back regardless).
The scan showed vascular dementia.

Dad accepted not driving at first, then started saying he would just go down town and buy another car.
We told him he wouldn't be able to get insurance and he said he'd just drive without it.
We then had to act quickly and transfer most of the money out of his main bank account so there wasn't enough in it to pay for a car. He grumbled, but it had to be done.
I'd had PoA for several years at this point. It meant I could act quickly when I needed to.

Ijustwantpeace2020 you are only going to make things even harder for yourself if you allow your husband to delay setting up the PoAs.
Listen to those of us who are already having to act on our relative's behalf.
None of us wants to be in this position but you have to be realistic.
Sorry to be blunt 🙁

kittylester

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.

I suggested LPA for both of us when the Bodach was first showing signs of ‘forgetfulness’. The lawyer came to the house ( on a good day), and was happy to start proceedings, however, when the Memory Clinic where the Bodach had gone for assessment were contacted, they said he did not have capacity, so it was just set up for me.
Our bank accounts etc were in joint names, so no issues there, and I was able to make decisions about his medical care, like a DNR and palliative care only ( he had cancer), though I have heard of people who have had problems because of a lack of LPA.

Ijustwantpeace. You must stop your husband driving now. If you have an accident and the insurance company know he has dementia they will not cover any costs plus they will tell DVLA and you could be fined for not telling them of his condition.

Also could you live with the fact of he hurt someone while he was driving.

My DH, who had been an excellent driver, became more confused and unsure but of course wouldn’t listen to anything I said, so I rang his consultant and asked her to test him because I didn’t feel he ought to be driving. She gave him a couple of spatial awareness tests and then asked how we had travelled that day; she then told him he could drive home but she would be writing to the DVLA immediately and his driving days were over. He was of course very upset but accepted what she said and at least it wasn’t me ruining his life so that made things easier. I did point out to him that having a clean driving licence for some sixty years should be a matter of pride and it was a good thing not to spoilt that. Not entirely sure he believed me, but I was so relieved that he stopped before he caused an accident.

I am so terribly sorry for what you are facing. Life can be so cruel.

How to help husband? It seems to me that your husband will be fine because his wife is so caring. It is you who will need help and care. Time to work on a plan and get your support system lined up.

Support is what you need. Keep a diary and whatever you do, try to put this disease in a 'box' and don't take anything personally. The frustration he's feeling is because he knows he's losing his confidence and it's affecting his self esteem and manliness. Everyone that cares fir people with dementia need a thick skin, a good sense of humour and some regular down time to recover from what it does to sufferers of this disease. Never feel guilty for getting some 'me' time. You'll need it to manage living with him. Good luck

The professional was a doctor from the memory clinic who had never seen him or spoken to him but was told by another staff member that he kept getting lost. That wasn’t the case at all and I was furious as it was like Chinese whispers! By the time the doctor was told it had been blown out of all proportion. IF he has dementia it is in the very early stages. I am not in denial but I know my husbands capabilities. It could be memory loss due to the medications he takes for various chronic conditions but as he now refuses to see anyone about it I thought the best thing to do would be to find out how to help him. If I thought at any point that he was a danger on the road, I would inform our GP and get him stopped but he is far from that point thankfully.

That is great to hear. I like how you capitalized IF because it helps us understand the circumstances. My husband is okay driving but I slowly transitioned to me driving by telling him that I love to drive (I do not). You will know when things change and they might not change. With my dad, we took him to have the visual spatial test for driving and he passed with the highest marks but if you asked him what a red light meant or a green light, he would get the two confused. Finally, a doctor wrote a "prescription" for no driving for six months. You see, it wasn't me or us that ordered it.

It seems to me that it is vital, for both of you, to find out what is really going on.

IF your husband has any form of dementia a diagnosis will open the door to lots of help which you will be so grateful for later on.

If he gets a diagnosis of Alzheimer's Disease there are medications that can help slow the progress.

Please try to get a proper diagnosis. It will help your husband and you.

The fact that the professional who advised your DH to stop driving was incorrectly advised, makes no difference to the effect of the ban. If your DH drives after that, he will not be insured and this could cause problems, including the possibility of a criminal conviction if he does.

the bst thing for him to do is to apply for an assessment. here are links to websites that may be helpful
www.stokegiffordmedical.co.uk/wp-content/uploads/sites/696/2020/06/factsheet_driving_and_dementia.pdf
www.drivingmobility.org.uk/driving-with-a-disability/dementia/

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

I would do this.
Can you maybe decide to do this for you and then see if he will "tag along" and do one too?

M0nica

The fact that the professional who advised your DH to stop driving was incorrectly advised, makes no difference to the effect of the ban. If your DH drives after that, he will not be insured and this could cause problems, including the possibility of a criminal conviction if he does.

the bst thing for him to do is to apply for an assessment. here are links to websites that may be helpful
www.stokegiffordmedical.co.uk/wp-content/uploads/sites/696/2020/06/factsheet_driving_and_dementia.pdf
www.drivingmobility.org.uk/driving-with-a-disability/dementia/

I think that would only be the case if the professional had reported it to the DVLA.

Not sure why Professional has been put in inverted commas previously if the person concerned is a doctor.

Do please look at the Alzheimer’s Society Talking Point forum. It was a lifeline for me when I was going through this for too long, with both FiL and my mother - one after the other. Whatever you’re going through, someone will have been there and will know exactly what it’s like.

There’s no point in correcting someone with dementia by the way - they will almost certainly forget what you said so soon anyway - you can usually just go along with whatever it is, which is easier (speaking from experience here!) .

I would just add, please ignore probably well-meant advice from people who’ve never lived with it and really don’t have a clue. Advice I had from the clueless included diet (a healthier one would help - no it won’t - and ‘You should make her do this or that for herself - use it or lose it!’ No conception that she’d already lost it. And ‘You should tell her the truth!’ - never mind that she was going to find it very distressing and would have forgotten whatever I’d said inside a minute anyway.

Absolutely live in the world the person with dementia lives in. I looked after an aunt and uncle, both with dementia and aI lways did that. Another relation always told her that her sister had died whenever my aunt spoke of her, which always upset her because she said 'nobody told me', which of course wasn't true. I just accepted what my aunt said and replied accordingly.

Good point, "*Witzend*, about Talking Point.

Except it appears to have changed it's name!! So here is a link.

forum.alzheimers.org.uk/

Thank you Pascal.
Unless people have lived with a spouse / partner with dementia it is hard to understand how difficult it is. People say write appointments etc in a large calendar, that is fine it the person remembers to check the calendar!
Ijustwantpeace, try not to say " do you remember" my DH responds better to " do you recall" it is so easy to become frustrated with the constant confusion that leads to misunderstandings. My advice it don't argue with him - you won't win ! Agree and walk away , he will probably forget what it was about within seconds.
Please DO speak to your GP / practice nurse. They need to know how this is affecting you.
We are going to a choral concert on Saturday afternoon, I asked if he would like to go and he was very keen, but I know he has already forgotten about it . The constant overseeing things , the constant reminding, the constant repeat questions are exhausting! I have been for coffee to our community cafe this morning and I know this sounds dreadful but I don't encourage him to join me . I feel I need my space , my time with friends and neighbours - just a couple of hours respite helps me.
He is in the early stages of Alzheimer's and it is already taking it's toll on me. DH is fine!😂
No. 1
Speak to a medical professional asap
No. 2
Find time for yourself and don't feel guilty
No . 3
Try not to ' jolt ' him out of confusion - he can't do that.
No. 4
Try not to contradict him , even though you know he is being irrational and unreasonable.
No. 5
Keep in contact with friends and family , and tell someone what is happening.
We are in the same boat , only difference is my DH has a diognosis.
PM me if you need to off load. Hang in there and take good care of yourself.
I worked for many years for the Alzheimer's Society so I hope I gleaned sufficient information to help me - but when I feel the man I love is
becoming someone I can no longer rely on it is a very difficult concept to grasp. 💐