please tell me I am not the only one

thank you for all your kind replies. I have spoken to so many services here in north devon and everyone says we will put you on the list which I think must be very long as they all tell me there is no money for dementia services here.
On monday I will do some more ringing around and see what I can find
Many thanks again for all your kind replies

So sorry to hear this and you're not being at all selfish. Contact social services which you'll find within your local authority's website if you are struggling to find their phone number anywhere else. You need to ask them to do a carers assessment on you. This will open up all sorts of help for you and make sure to let your GP know you are a carer so that it's on your notes as backup. My dad goes to a dementia day care centre a couple of days a week which means as a family we have a breather. Think of yourself. By helping yourself, ultimately it will be helping him. Sorry if that sounds patronising, it's not meant to be. Hugs to you.

You are not selfish or doing anything wrong at all. I have a variety of suggestions that might be of use to you. Firstly, if and when you have a quiet time to yourself , can you think back to how your husband was before his illness. Would that man have wanted you to cope with everything you are handling now? Probably not. Then it might be worth taking a little time to have a notebook or a piece of paper and write down anything that you enjoy, whether you are able to do it at the moment or not.

So you might put gardening or did you used to go swimming, or walking with friends or visiting a specific place that meant a lot to you? Put a collection of places and things that you enjoy down, and then on a bad day you can look at them and choose something you would like to do or place to go to.

I would suggest that you start to look at a "day off" per week. So that you have something to look forward to for yourself, to give you something positive in your life to enjoy, which also helps you cope with the hard everyday life that neither of you asked for but unfortunately you find yourself in this place now. Dont feel the slightest bit guilty, but see the"day off" as your way of coping with the rest of the week. It should give you a little something to look forward too, and also to be able to look back on an hour or two you enjoyed the previous week.

Do get in touch with all and any people who can help you. Look at carers groups and for things like a day unit or group that he might go to one day a week at least. Speak to social services and your gp and explain that you are trying to organise a day off a week to ensure that you can carry on caring for him the rest of the time. You are more likely to be able to carry on with a weekly break and the various agencies will know and understand this. Speaking to other carers may also give you some good ideas for your locality.

Another possible tip is that I used to do 3 days a week hospital car taking people to and from hospital. Quite often family members would say how pleasant it was to be in the car as the person with dementia often sat more quietly and enjoyed the view as we went along and spent less time asking repetative questions. So if you drive you might look at simple things like a drive in the country and calling for coffee or tea somewhere. This would give the sense that you are still doing something together, but give you a little bit of peace and quiet.

Do you swim at all? Again a physical thing, which can release tension and give you some exercise. If he enjoys swimming and has done it in the past it might be a very good thing to do, as once you are in the pool, he knows what he is doing, you are visible but can be doing your own thing and relaxing a bit and the chance for some general conversation with other swimmers.

The important thing is for you to accept and recognise that you are not at all being selfish or self centred by doing these things. They are actually ways that you are managing to keep going in a difficult situation. When you are at home and he is rude and rather cruel, you might find it easiest to simply not reply but leave the room. Also I think it is a great idea to thump pillows and cushions and let the tension go that way.

Do stay in touch with GN's as you will find many people understand your situation and we try to be supportive of each other. There may be nothing we can do to make the physical situation any better but we are here to listen and support and help you recognise that you are doing the best you can and you do have a life of your own to consider too.

Whilst of course you want to share what you can together,you may in the future have to see that sadly you are not in that together situation that you were in. This is hard to cope with, but at the same time once it becomes that different situation, where you are a carer rather than a wife, you can come to see that you need to look to friends and hobbies to give you some personal pleasure and support . It will always be sad but can actually become less painful if you are not looking for any reaction from them , and can see that if he is being unkind or cruel, that it is not the person you loved who is doing this and so you can gradually let yourself be less concerned with what they say or do in relation to yourself.

Canary girl, 1 am ' with ' you completely. My husband was diagnosed with Alzheimers over a year ago. Mum also had dementia but that was easier for me to come to terms with. When its a spouse/ partner is is completely different kettle of fish. I fully understand your frustration and anger.
My husband is completely irrational at times yet still manages some long established skills. He has no idea when, where or why we are going out, pops to the shop for milk and comes back with bread! Has decided he doesn't like me going out without him , he decides certain people don't like him , says he will do a job then immediately forgets and don't get me started on the bins 😱!!!! His watch stopped working so has dug out a very old one- needs winding , he forgets to do that so never knows what time it is!!!! I just asked " why don't we buy you a watch that actually tells the time ?" He was most indignant and keeps telling me it must be ok because its gold! I know if I buy him a new one he won't wear it! So on top of his confusion he never knows what time it is and refuses to let me check his watch, wind it up and see what the problem is. My life is shrinking and I am very concerned that friends/ family think l am exaggerating because he is very good at social chit chat . When we do go out to a family get together he is very likely to refuse to go - this happens as we are about to leave the house. I have given years to the Alzheimers Society on a voluntary basis and thought I had a sound understanding, however now have a deeper understanding! It is very easy for others to think the carer is not patient enough what they fail to realise is that the carer is living in a new and very bizarre world, they are also very fearful of the future ( and may be ageing themselves) and are also losing the person who has always be reliable- its a complex set of emotions. Full understanding of the situation is only recognised through personal experience. Becoming fussy about certain foods is something else that has happened, not long ago he was completely convinced he had a cancerous lesion on his leg ( was a red pin prick!) Saw GP was an absolute nightmare - fortunately passed now. My life is becoming more than difficult and there is worse to come! I have contacted Admiral nurses , they are very understanding, so do try that.
You are most certainly not alone , I know my husband will get worse and I worry I will not have sufficient stamina to cope. I do hope you have applied for Attendance Allowance? If not please do that but it is essential to get help to fill the form in - I think age concern will help. You must ' paint' the worse scenario!!!
Keep posting, PM me if that helps. As carers we must put ourselves first if we are to do the best we can in our caring role. I went to bed early on new years eve and couldn't stop crying . I am sad, angry and frustrated! We have been married 51 years and my man is slowly disappearing- it breaks my heart.
Sending you strength and hugs. 🌼🌹🌸

Canarygirl, 💐🙏
Shelflife, 💐🙏

Please have a look here too devoncarers.org.uk/ and see if there is anyone local who can advocate for you

Of course social services are ignoring you. You need to ring them back and ask for a Carers assessment - lay it on thick, don't be nice

Heart felt sympathies to all in this position. DH has not got dementia but is slipping away from extreme frailty.
And seeing a dearly loved DH disappearing mentally and physically is very upsetting.

The only way I am coping is to regard what I do as a job and I need a day off from it once a week which I am negotiating. 2026 is going to be a year of change for me.
As always Madeleine provides sensible advice. And you must leave the room if he is unpleasant OP. Just walk out. Unless he has always been like this to you, then it is his illness talking.

Keep in touch on this thread. Keep it open then all the good advice is here for you and others in a simlar position.

Thank you Helter Skelter, I will now try and view my caring role a a job . I already feel to be disengaging from him and I hate what is happening to us. People say " stand up to him , don't let him rule the roost" if only it were so easy! They have no idea about the complexities of dementia - no point in arguing with someone who has dementia because you will never win. Can't believe this is happening to my reliable man . So many people in this dreadful situation- it is like living in a permanent nightmare. I hope this thread helps everyone who are in this situation. Thank you canary girl for your post. Hugs to aĺl those who are struggling.

JaneJudge

Please have a look here too devoncarers.org.uk/ and see if there is anyone local who can advocate for you

Of course social services are ignoring you. You need to ring them back and ask for a Carers assessment - lay it on thick, don't be nice

I had a Carers assessment and it was a complete waste of time and not worth the paper it was written on. You tell them all the things that might help you in your role as a Carer but you get nothing. Sorry to be negative, but it's the truth.

Please make sure that you have all the benefits to which you and he are entitled.

And, for those of you caring for people with dementia Google the 'Bookcase model of memory loss'. Carers on our courses find it really helpful

I think Carers Assessments can be a lottery. Round here people seem to be fairly successful.

You could contact adult social services and ask for help. It woulda least help.You to streamline what you can and can't do.

You have to be persistent and ask your doctor to refer you ( or actually your partner needs the help of social services because you are close to breaking point!)
This will put you higher up the list!
I've heard it is heart breaking having to watch your husband slip away into someone unrecognisable.
So as we are supposed to be a socially responsible community you must continue to press social services for help.
Get all his notes from the doctors and send them off to your social services and have the attitude that "not enough money " is not a good enough answer.
Prioritise yourself by sending an email to your M.P. If you must.
You deserve a lifeline!

back to say thank you for replies. A few further details the bleed has left him dizzy and unbalanced all the time so we cant go in a car or for him to go to dementia cafes or to whatever the name is for a days care as movement and too many people talking throw him completely and he is violently sick
I have spoken to devon carers and they did an assessment but think there are others in a far worse situation and I am on the list!
I am so thankful we moved to this ground floor flat although I miss my home and garden
Many thanks to all who have shared their situation and I can only hope things get better for all of us

Canary I have some professional knowledge of caring for people with dementia and their carers. You need support. Alzheimer’s Society or Alzheimer’s Scotland can provide excellent signposting to services local to you. Damage to certain part of the brain can cause changes or exaggeration to behaviour and loss of inhibitions. As a carer there are workers who can provide you with support and education to help manage them. You do however need to make the steps to find out what is available. You don’t need to do this alone. While your husband may be resistant to help you can get help for yourself. I hope you can find some help and perhaps the new year is a good time to look for change.

Canary girl, you and others like you such as Shelflife are amazing, it us truly heartbreaking that looking Zfter you husband has made you so ill. Castle has given you such good advice. All Carers should have back up, just think what a care package would be if your husbands were in hospital, you certainly need help at the moment, your husband needs Weeks respite to give you a break, whether your husband agrees or not, you will be of no use if you fold up, you also need one full day off a week., I very much hope that you and all others in your position get help. Never mind awards to those just doing their jobs, people such as you are the true heroes.

Oh Canary and Shelflife, I feel for you so much. Please, please ask for help. Contact the Alzheimer’s Society and definitely your GP. Make sure they understand how desperate for help you are. Ask what is available in my area to help, who can I
contact, who can I turn to for much needed support? I too am going through something similar, husband diagnosed with Alzheimer’s 14 months ago and I am finding it very difficult to accept and come to terms with. As Shelflife says you don’t have the deeper understanding until you actually live with it and it is so frustrating and exhausting when your loyal, loving, reliable husband is being irrational or unreasonable through lack of understanding. I am so lucky, though, as my DH understands and accepts what is happening to him and tries his best to be reasonable and help himself and is very appreciative of what I do for him and around the house. We are so fortunate to have good neighbours, family and friends who are supportive and a local Dementia Cafe which he loves going to. Please share and lean on anyone who is able to support you. I wish I could meet you to offer support. Meanwhile please, please contact your GP and ask for that much needed support. Sending much love to you and Shelflife and anyone else coping with this dreadful condition. Hang on in there. You are not alone, although I’m sure it must feel like that at times. Much love and kind thoughts.

For all those going through difficulties with partners and children, I salute you. I have a similar situation developing but not nearly so bad at this stage. In the long run it makes me a lot more understanding of some of the strange things people say and do, particularly in a couple of clubs for 65 plus people I am in.
Here’s to carers ! 🍷 🍷

After a stroke in 2018 I was left caring for my Husband. For those of you who talk about help from Alzheimers organisation, Social care and GP's it is all pretty academic if you are a 24 hour carer.

The only help I had came from Age UK aiding with forms for Attendance Allowance. One visit a year from a nurse to check our situation. Otherwise all appointments, dental care and chiropody were down to me with help from youngest daughter (who was fed up with situation after 7 years).

My DH would not go to any of the local social clubs and was so miserable with his situation that I was unwilling to force him.

The last 3 years of his life were indescribably awful and my only release was my garden.

He died in January 2025 after a fall and was bed blocking in Hospital for the final two months.

I have the greatest admiration for anyone who takes on the care of any person with dementia. Please be careful about telling people that there is help out there as in my experience as told by others on here it is very thinly spread.

Blossom 14, I do get where you are coming from and you are right that the bulk of the care is 24/7 for the carer. Canary probably does need to speak to someone to see if there is anything at all that could ease her situation a little bit. If there is nothing physically available through the NHS in her area, maybe if she was able to get support to apply for the Attendance Allowance and was fortunate to be awarded it (I appreciate it’s not a given) she could maybe use it to pay for some help to ease her daily life in some way - only Canary will know what would make her life a little more bearable and she perhaps needs to be pointed in the right direction for some support, however little is available. Difficult if her husband is unwilling to engage and is uncooperative but she herself desperately needs to offload and find some space and way through her difficult days. So sorry to hear of your situation, must have been so hard for you to bear and I’m glad you were able to find some solace in your garden. Wishing you a more peaceful and contented coming year with good health too. As you say great admiration to all the carers out there, whether through Dementia, cancer, disability, strokes or mental health. Respect to all.

My heart goes out to you .

In my experience brain damage caused by whatever - bleeds and tumours can cause the patient to become extremely vindictive.
Long term illness such as COPD can cause unpleasantness as well. They have little or nothing to look forward to and take it out on you .
It's oh so familiar to me .
There's plenty of information on the Web about carers abusing elders and not the reverse .
Among several insults-I was laughed at for having a big bottom everytine I bent over .
A friend was told by her mother that she now knew how she got so fat having seen how much she eats .
They picked on the one thing about which we were sensitive.
Both of us were exhausted and exasperated.
Another friend's husband walked out on her and bought a caravan on the coast .
They rely on your being eternally sympathetic and abuse the situation .
You can retaliate.
You don't have to take it.
On one occasion , I was told that my father was phoning social services and would tell them that he was being abused .
This outburst was due to his lunch being a few minutes late due to my waiting a long time for his meds in the chemist . Someone had come in to give him tea and to tell him that I was delayed .
"Okay I'll get the phone and dial the number as you are unable to."
I walked away having made a list of essentials for my successor to do when I was arrested - "important Dad otherwise your routine will be out of kilter ."
He began to look a bit perturbed.
Having got the number and began to dial. - he suddenly retracted.
I didn't hear the threat again .

Please get some treatment for your hair loss
I'm sure that it will grow again .
May you get well soon .
Wishing you a very happy New Year.
Esmay
X

My father has passed now and I really miss him despite everything !

blossom14

After a stroke in 2018 I was left caring for my Husband. For those of you who talk about help from Alzheimers organisation, Social care and GP's it is all pretty academic if you are a 24 hour carer.

The only help I had came from Age UK aiding with forms for Attendance Allowance. One visit a year from a nurse to check our situation. Otherwise all appointments, dental care and chiropody were down to me with help from youngest daughter (who was fed up with situation after 7 years).

My DH would not go to any of the local social clubs and was so miserable with his situation that I was unwilling to force him.

The last 3 years of his life were indescribably awful and my only release was my garden.

He died in January 2025 after a fall and was bed blocking in Hospital for the final two months.

I have the greatest admiration for anyone who takes on the care of any person with dementia. Please be careful about telling people that there is help out there as in my experience as told by others on here it is very thinly spread.

blossom14

Sorry to hear your story. Nothing has improved since your experience and I totally agree with your final sentence “please be careful about telling people that there is help out there” etc.

I was repeatedly told that but as I said in my earlier post all I ever got was a stupid lanyard saying “I am a Carer”. 🤣 absolutely nothing else ever!

Also, if I had a £ for every person who has told me to “look after yourself” I would be very wealthy indeed. How the hell do you do that when you have no time to yourself? I have been trying to arrange a walk with a friend since last October and finally managed a one hr walk today.

I don't understand why doctors send carers to people who don't want them when from quite a few people's experiences they are not getting any help at all. Maybe it's only if the person is assessed to be terminally ill, yet that's what Alzheimer's is.
Maybe it depends entirely on where you live but when we say that there is help out there, that's what we've seen. For example my neighbours mother had Alzheimer's and she went to work every day and carers let themselves in to assist her mother. Perhaps it depends how far gone a person is, or maybe they just assess the partner who does the caring to have plenty of good will. However, everybody has a tipping point. And there are cases of carers going beyond the tipping point which is why we ask them to seek help before they reach that apex.

Lynn w, thankyou for your understanding. It is indeed very distressing to witness my husband becoming so confused. Sadly, unlike your husband mine seems to be in denial. We have 3 wonderful ' children " all within striking distance if I need help.
My husband is under the ridiculous illusion that they are unaware of his diagnosis! He has no concept of what is happening to him . I love him dearly but don't recognise this ' new ' man and to be honest I don't like what I see! I am a very easy going woman but I really struggle when he is so irrational. So many changes in his character are hard to accept. To others, friends and family, he comes across as reasonably ok- that is the hardest thing for me because I worry that people will think I am exaggerating.
When he gets the wrong end of the stick even I have to stop and think because what he is saying sounds plausible!! , and I have always trusted him . Alzheimers is eating away at our relationship and that scares me. He is an intelligent, articulate man who has always worked in the financial world. I have just registered the POA with the bank. He keeps telling me he wants to bank online - that would be disastrous , he can't even use a cash machine!! Unbeknown to my husband our accounts are online now but I have made it very clear to the bank ( and stipulated when I made the registration) that he must not have access to online banking. Without going into too much detail he has already made two financial mistakes, fortunately I was able to sort things out. He also almost fell for an email scam too, a friend in the states wanted money to pay for his wife's cancer treatment . My husband was most indignant when I told him he was being taken advantage of - accused me of being unkind! Fortunately his American friend sent an email explaining he had been hacked and wife was perfectly well! My husband accepted that. I am now very vigilant , I can scarcely believe my trustworthy sensible man can be so ridiculous!!!
Thankyou for reading.