suggestions for coping with dementia and husband

There is help but you need to research what you need and ask for it I managed to get some wonderful help for my mum whilst she was still in her own home GP was first port of call he arranged a social worker and occupational therapist to assess needs I was also given a list of charities for help with befriending, visits etc
SW also arranged a day centre twice a week to give Dad a rest and she felt very important going off on her own a bus or taxi picked her up and dropped her off
This was a few years ago so I m not sure if these things are still available but talk to your GP and ask for help
Good luck

So sorry Canarygirl1, my friend is 80 and her husband has had vascular dementia for two years. I am not aware that she has any professional help, luckily her adult children still live with her.

I have downloaded a few articles for her from the Alzeimer's society website here -

www.alzheimers.org.uk/about-dementia/types-dementia/treatment-and-support-vascular-dementia#content-start#

I hope there is support in your area to help you both.

One thing my friend has just discovered is that the dementia affects the eyes. She took her husband for an eye test, and he has now been registered blind. It seems that his eyes can still see, but unfortunately his brain cannot understand what he is seeing.

If you scroll down the page here -

www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sight-hearing-loss

you will see a green box with the title 'Sight, perception and hallucinations in dementia'. This is a free information sheet you can download, and might help you.

Take great care and do accept all offers of help from your family.

I am very sorry indeed to hear about this, and especially that you have not been out for 18 months.

My OH had Parkinsons which led him to become paranoid; and very anxious so he did not want to be left - he thought people were trying to kill him. So I do understand that feeling of not being able to leave him.

It took me a while but in the end I came to the conclusion that I could not be a fit carer if I did not look after my own needs with as much dedication as I looked after his. It is a big psychological leap to make I know. We are programmed to care, and we gradually slip into it and it takes over our life before we realise it.

With dementia, and the sort of problems my OH had, it is even more difficult because often the person we are caring for may not seem like the person we married.

This is how I coped ( or tried to cope):
- I employed a friend (someone he also knew) to be with him when I needed to go out anywhere. For example, I was determined not to stop going to the choral society I sing with. It had got to the point that when I did go, I had to keep ringing him up to check he was OK and invariably I finished up giving up and going home.
- I have DDs living locally and they would do their share of sitting with him - they too were on board with the idea that I had to look after myself too.
- I had lots of support from the Parkinsons nurse - there will be similar specialist nurses for your OH's condition.
- I also had lots of support from the local Parkinsons UK - there will be a branch of the Alzheimers Society near you.
- there are carers' organisations in most areas - try googling for the one nearest you.
- Social Services are there to help you organise carers who might come in; but you can do this yourself via any agency if you are over the financial limits for LA help.

To be honest I think the biggest stumbling block is allowing oneself to acknowledge that it is OK to shed some of the load - the sense of duty is so ingrained that it can be a struggle.

My advice to you would be to have that struggle - and get some help. There is more than one way of discharging your responsibilities to your loved one - just because you might be handing some of it to someone else does not mean you do not care. You are making sure he has care, but not necessarily doing it all yourself. Honestly - that is the most difficult hurdle.

I am sending you lots of fellow feeling and a hand-hold. Please look after yourself as well as your OH.

Canarygirl when my husband had a brain bleed we were told by a nurse that we would only get help if we shouted. This was so true, make a nuisance of yourself, keep ringing anyone you can think of. Social services, doctors, any body! Don’t tell anybody ever that you can maYou can only look after him if you keep fairly well and fairly sane….it’s in his best interest be brave.

Whoops apologies, posted mid edit! Don’t tell anyone ever that you can manage…

So sorry to hear you're going through this.

My mother had vascular dementia and we had carers coming in daily which was a huge help.

She also went to a local day centre which she thoroughly enjoyed. This gave us all a few hours free.

You do need to be able to get out and about or your health will suffer.

Good luck

thank you for kind answers, I have downloaded info pages and will read them quietly. Our Surgery has a dementia nurse who is fully booked until april next year so we have an appointment them, it seems the pandemic has decimated services and they are hard to access.
Think I am being weak and feeble and should cope with this if only because he has always been my knight in shining armour but he just vanishing before my eyes

Can I ask was the diagnosis of vascular dementia made at a Memory Clinic? If so there is usually a team attached to it and the community psychiatric nurse should be told how things are progressing and suggest a support plan for you. I feel April is much too long to wait for assessment. It does depend on how your OH is coping just now and the problems he is having as to what help is most appropriate. If he is struggling with personal care then you should be able to get some help from carers. He may be able to attend a day centre which would give you a bit of a break or in our area there was a volunteer group who had people able to sit with someone for an afternoon to let the spouse go out. There is also respite care for a week or so again to let you recharge your batteries. Have you applied for attendance allowance? This is not means tested and it maybe that he would be entitled to this. It can be used to pay for anything you need not just carers.

A well informed post from Luckygirl
Make sure you look after you.
My late brother had among lots of other things, vascular dementia as did my mum.
It's a condition that's so very hard to cope with emotionally and you'll need the patience of a saint.
Your husband will more than likely get mixed up in his mind with things. It's far easier to agree with what he says than to try to put him right. He may ask the same question over and over again, He may get aggressive. I won't go on and on but as Luckygirl say's there is help out there.
You need to look after you too.

You might like to start a journal Canarygirl1, you can record your feelings in there. I hope you can sort out a system where you get a few hours off at some point.

I don't know if your husband likes singing, but a local dementia group have a very successful - 'had', pre Covid - singing group. My other friend's husband gets great pleasure from it.

Contact the Alzheimer's Society They have brilliant Dementia Support Workers who deal with all sorts of dementia not just Alzheimer's. They can advise you on benefits, the support available and just listen to you

There is a forum on the website, Talking Point, where people swap experiences and tips.

Admiral Nurses are good to - specifically for carers.

I assume you have applied for Attendance Allowance - if not, please ask AgeUk to help you.

You can also get 25% off your council tax 8f you are eligible for Attendance Allowance.

But, above all, please ring the Alzheimer's Society.

I had carers , they helped him shower and dress , but I paid carers to sit with him so that I could go out to my club , it is so important to look after yourself , you can’t help your Husband unless you get time out to recharge your batteries!

Not much help in my part of the country my family help me when they can, but as a poster up thead has advised Google alzheimers forum its a good support. Also M4D a radio station accessed online is a good one.

Im now looking at paid help to enable me some time to myself as that is essential.
Ive had a conversation with social work but covid and restrictions are very much the whole conversation
Im not a shouter but i agree you will get more help if you are..
Good luck..

Can I just add that nothing comes free.
My brother became bed bound and had to have 2 carers, 3 times a day for personal care which he had to pay the full amount which was around 18 hundred pounds a month. A total of 1 and a half hours per day. Obviously it's all according to how many carers and how many times a day they are needed.
If your husband has above a certain amount of savings he will have to pay the full cost of care. if under the amount he will have some help towards the care.
Joint savings I'm not sure about as my brother was a single man.
Do apply for attendance allowance. There's a day rate and a higher rate if you have to help your husband during the night. It doesn't matter how much savings you have to apply for this.

Do you have a memory Cafe anywhere near you? There is one near us and the people who go enjoy time with others who understand their situations. I think it is for people with dementia and their carers.

I am sorry you are going through this. Other posters have given wonderful advice. All I would suggest is pick up the phone and contact CAB for a comprehensive assessment of your financial needs/entitlements and the local social work office regarding emergency respite support. You are obviously doing an amazing job but take any support offered. You deserve it.

kittylester

Contact the Alzheimer's Society They have brilliant Dementia Support Workers who deal with all sorts of dementia not just Alzheimer's. They can advise you on benefits, the support available and just listen to you

There is a forum on the website, Talking Point, where people swap experiences and tips.

Admiral Nurses are good to - specifically for carers.

I assume you have applied for Attendance Allowance - if not, please ask AgeUk to help you.

You can also get 25% off your council tax 8f you are eligible for Attendance Allowance.

But, above all, please ring the Alzheimer's Society.

Just to expand on your comment about Attendance Allowance. If you are entitled to this plus (and this is the important bit) have Severe Mental Impairment which covers conditions like dementia there is a form which is completed and sent to the GP for signing to confirm the diagnosis which entitles exemption to Council tax or a reduction by 25% if living with others. I am going on past experience with this information but a quick google makes me believe this is still the case. So certainly worth looking into for those who care for people with dementia. There are teams out there who will give advice and support and it is so sad to see people struggling when help is available (I know with covid this will have changed). An assessment with a community psychiatric nurse via the Memory Clinic or GP would provide medical and benefits advice. They could also refer onto other agencies like social workers, occupational therapist etc.

Please do not wait patiently for an appointment next April!!!
Get on to your GP and demand an urgent referral.. scream and shout!!
The alternative is you will break... and he will have 2 patients to attend.
Do NOT take no for an answer.. you BOTH need help now..

It really is beyond all reason that the dementia nurse with your GP practice cannot see you till next April. If that is the earliest they can manage then the are clearly not in a position to offer you the sort of on-going support that is needed. I was on and off the phone to the PD nurse all the time as things progressed, and she would call in frequently.

The hospital should have a specialist dementia nurse attached - certainly that is the case round here. That might be worth a try.

But please do not wait till this nurse can see you - you do need to start the ball rolling on getting help and support right now.

Please contact the Alzheimer's Society - they help you.

Vascular dementia often has a 'stepped' decline. So the patient is on a plateau for a while and then goes downhill and then plateaus again.

If there is a marked decline, it might be worth considering PINCH.

Pain
Infection
Nutrition
Constipation
Hydration

The above can have a huge bearing on how a person living with dementia presents. Infection (often a bladder infection) can really through things out of kilter.

Throw not through!!

Canarygirl1 Youa re absolutely not being 'weak and feeble'. Caring non-stop for someone with dementia is grueling and exhausting, and as so many people say, you must look after yourself.

Contact the Alzheeimer's Society, they can be really helpful and make a nuisance of yourself with Social Services, your GP, who sounds absolutely dreadful - not being able to see the Dementia nurse until April! I looked after relatives with dementia for 8 weeks and I found the only way to get any help was to make a pest of myself. In the end I got help because they were sick and tired of having me constantly on the phone.

Why Monica exactly an the Alzheimer's Society can often gtresults where a carer can't.