suggestions for coping with dementia and husband

My BIL had Parkinson's and a carer came to his home one morning per week in order to provide my SIL with some respite. They also had someone come in mornings and evenings to get my BIL up and put him bed.

My own Mother developed pre senile dementia when she was 53. A few years later it was diagnosed as Alzheimers. In the early stages she realised that something was wrong but she thought that she had cancer. At first people realise that they are ill and as they reach a plateau and then deteriorate some more they gradually lose their reasoning and sense of what is happening to them. Watching someone with this disease is dreadful for the family as they lose their loved one but can be a relief too because the loved one is not aware.

My Mother was assessed over a two week period at UCL and then referred to a geriatric doctor in her home town. When I visited him I discussed what we should do and his response was that you'll know when the time comes. Very helpful! But he also warned against trying to care because it was very difficult and, especially when a relative is the sole carer, after the Alzheimer's sufferer died it was often necessary to then care for the carer. Or "pick up the pieces" as he said.

My Mother lived for about 10 years after the UCL diagnosis.
A large part of that time was in a residential home and they kept there and cared for her rather than send her to a nursing. The staff were very kind. When I visited I used to take my two dogs and most of the residents were very pleased and vied with each other to pet them. One or two moaned but most of them had had pets of their own and loved seeing them.

I was in my early thirties when she had her UCL diagnosis. My father had died of cancer two years earlier and we were all very glad that he did not live to see my Mother deteriorate.

...and the people who try and correct them every time they something papably incorrect or feel that they should always be told the 'truth'.

When in care my uncle, who had designed and built his own conservatory, in his younger fitter days, kept looking at the conservatory in the care home and telling people he designed and built it. Some of the carers would always contradict him, which caused upset and confusion. I always agreed with him, and did my best to make sure everyone else did. What did the 'truth' matter, compared with his mental comfort.

welbeck

yes, like the relative who only sees the person once or twice a year, telling the carer, don't keep on at him, don't tell him what to do, there's nothing wrong with him, you;re too bossy etc.

Oh yes! ?

Canarygirl1 - day centre or respite are still possible even if his mobility is impaired. OH went to respite in the local hospice - we organised a suitable wheelchair taxi. You can get a wheelchair via local occupational therapist (ring social services) or hire from local Red Cross.

I agree about the useless advice that sometimes used to wing its way to me. I had to ring 111 for my OH because he was in acute abdominal pain caused by severe constipation - they sent an ambulance.

The very young girls who arrived sat down and lectured him about intake of roughage, fruit, liquid - what a joke.......
- my OH was a doctor so this information was entirely superfluous - the constipation was caused by his illness slowing his gut.
- my OH was weeping in pain - hey - have an apple - that will do it!
- he had a serious impaction that needed immediate treatment.

Eventually I managed to get an on-call GP out (it was of course the weekend) who did a manual removal.

Exactly, Welbeck - not to mention ‘a healthier diet would make a big difference (never mind that she simply wouldn’t eat it) and ‘You should make her do that herself - use it or lose it.’

No comprehension of the fact that she had already lost it!

Oh, and the aunt from Canada who said it was no wonder, when she was just watching TV all day. Now, if she was only more like the sprightly 91 year olds at her church…

Bugger off!

yes, like the relative who only sees the person once or twice a year, telling the carer, don't keep on at him, don't tell him what to do, there's nothing wrong with him, you;re too bossy etc.

I second the Alzheimer’s Society Talking Point forum. For several years it was a lifeline for me.

Whatever you’re going through, someone will have been there. There aren’t often any easy answers, but at least you can always offload to others who know exactly what it’s like.
So few people who haven’t had to live with it, ever have a clue.

All too often they think they do, though, and like to give you the benefit of their ‘wisdom’ ?

also look up your local carers' centre, sometimes called princess royal centre.
they are for family carers like you and can advise on many aspects, they know the local provision and have contacts.
and may have low cost sitters who could come in to give you a break.
good luck.

sorry for long delay in replying but i have taken your advice and spoken to my own gp today and said help required now and some sort of ongoing assessment result admiral dementia nurse and consultant coming tomorrow. Amazing what money will do, also physio coming next week and hearing team. I would never have been brave enough without all your kind encouragement so many thanks.
I dont think i said in original post, husband is completely house bound so unable to visit groups or go for respite days which is a shame but at least something is happening now and thank you all again you have given me new heart and i am most grateful

Kittylester
Lots of people caring for dementia sufferers don’t know about the plateau
I’ve not long witnessed my friends mother going through one.
I support a neighbour who is in the early stages of the disease and it’s very obvious from incidents last week that she is going through one.

www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

The above is the link to the Admiral Nurses help line.

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

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.

Throw not through!!

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.

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 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..

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.

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.

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.

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.

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..

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!

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.

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.