Dementia that is only seen by me

Betty65, I am 88 and don;t have dementia but I love reassurance whenever I find it although I don't expect much reassurance.

If you mother is dementing she will need as much reassurance as you can give her, even if you have to tell white lies or repeat the same over and over again. For instance if she is worrying about being a burden you tell her you would not like to be without her and what you do and her company are your greatest pleasures, that she is your treasure, and you will always want to take care of her.

So concerned for you, Mealybug...you do need to prioritise your own health and wellbeing now as you're showing symptoms of burnout after all those years of selfless caring.
My DH has had Alzheimer's for the last 7 years and many times I've felt like running off, even though he is a gentle man with none of the symptoms you describe. I promised myself I would care for him at home until he no longer knew me, but the thought of going into my eighties with little respite and totally worn out sometimes gets me down, especially with lockdown and nil conversation. You've more than done your bit for him, Mealybug, so think about telling your GP and family you've had enough and find a home for him asap.
Big hugs.

I have my elderly mother living with me. She has 2 carers per day so it's not too difficult. However, if she ever becomes ill or incontinent I shall put her into a home. I am not prepared to give up my life for her as she has been selfish all her life. You need help and a lot of it. Do NOT feel guilty. You will become ill yourself and what good would that be to anybody.

Has your Mother been diagnosed? The reason I ask is twofold, firstly depending on the type of Dementia there maybe medications which can help to slow the progress of the Dementia. Secondly, if you know what kind of Dementia it is then the progress of the disease and the ways it manifests will be different and knowing more about the type of Dementia might help you to put in place strategies to help. There is a lot of information on the Alzheimer's UK website and under normally circumstances there is also carer support. I know it’s hard, but a little support might make it easier for you to cope. Wishing you the very best of luck ?

Please get as much help as you can. With the best will in the world you cant do it all yourself and you will end up making yourself ill.

Jenny see if you can register with your husband's practice as his carer then you can talk to the gp alone.

I can really relate to everything you say Betty65. Although my mum didn't have dementia, I was the only one taking care of her for the last 3 years of her life and took the brunt of everything. She was lovely to everyone else she came into contact with. Sadly, due to cancer, she spent the last week of her life in a hospice and a member of staff heard her berating me for something trivial. She told me it was because I was closest to her. There is a lot of good advice on here re. your situation. I hope you get the help you obviously need.

Ps. We got the diagnosis quite easily, as we were referred to a memory clinic. Who were great. But when we see the doctor my husband is sweetnesses and light and tells him all is well. I just wish they spoke to me alone. ???

Oh I hate dementia with a passion. I understand everything that’s been said. I know it’s awful to have dementia, but I think it’s worse to be the Carer. With my husband he’s lost any joy he’s had in life. He accuses me of lying to him, finding fault with him to start an argument. And believe or not, he’s not that bad yet. I’m dreading the future.
I like the idea of writing my thoughts down, sometimes I just want to run away. Life’s just horrible. When I see other couples of our age having a life together, it makes me very resentful of my situation. But I’m trapped.

Oh this brings back memories. My mum had Vascular Dementia and became very clever at hiding things, she accused ME of being mental and how could I dare suggest her memory was failing. As I have said before Talking Point with Alzheimer's Society was invaluable. You learn to tell 'love'lies' and the things you have to do to get help. Luckily my mum had a very good GP who would talk to me. Make sure you get a Power of Attorney for Health and Welfare as well as Financial. I did mine myself and managed to explain to my mum in a lucid moment what it was and that it would help should she ever become ill and she understood. There were times when she was downright nasty to me and it was very hurtful but next day it would all be forgotten. Everyone else thought she was a lovely old lady and there were times when I thought I was losing the plot! As for the carers employ them through a Company and explain that they cannot be dismissed unless it is via you. Tell your mum that these carers are there to help because there are times when you are not available. She will probably grumble and you will be the villain but stick with it. There are many tales I could tell some funny, some downright sad and this awful disease does change people. Stick with what you're doing, ask and make sure you get help, you may have to kick a few bottoms and quote 'duty of care'. Good luck with this and just ask should you need any hep or advice.

I know exactly what you mean, @Betty65 - I had the same with my FiL. To any casual visitor he was able to come across as a perfectly pleasant, if maybe slightly vague, old chap.
Often so different when it was just him and me! There were rages so violent that I’d have to leave the house, not to mention the endless, endless pacing, and interminable asking of the same question - I had to tiptoe around him on eggshells, for fear of provoking a rage.

I do thoroughly recommend the Alzheimer’s Society Talking
Point forum, for carers of people with dementia. There aren’t often any easy answers, but at least you can let off steam to people who know exactly what it’s like - people who haven’t lived with dementia hardly ever do.

What you describe is known there as ‘hostess mode’ - it would seem quite common for dementia sufferers to be able to present a ‘normal’ front for short periods.

Talking Point was a lifeline for me for more years than I care to remember, since having been through it all with my Fil, I then had it all over again with my mother.
All best wishes.

Mealybug Sorry I crossed with your reply. To me, your state of mind sounds like an emergency. If YOU define it as that then social services will move things forward. Do get help from the organisations mentioned.
Betty I also meant to say, if you put help in place tell them their contract is with you, not your mother as she has dementia, so she can't dismiss them. Tell her that too! If she has a key case outside she cannot prevent them coming in. She obviously likes them, so tell her if she dismisses them then she would have to be cared for in a care home. Be cruel to be kind.

I think getting the authorities to listen about anything, when it comes to especially older relatives that you have been looking after is very difficult. My mum was mentally totally alert but physically needed quite a lot of help. She was of the opinion that it was my responsibility to do things for her. Even though I was a widow with school age children working full time, and attending college part time. I remember telling a district nurse when at the end of my tether that the next call would probably be to certify her death because if I didn’t get some help I would probably kill her. Lovely district nurse laughed until I told her that I wasn’t joking. It took one of my college lecturers and the district nurse putting pressure in the social work dept as it was known then to get some extra help in place. It really is worth standing your ground. I would probably have been the one that would have had a breakdown had the help not been put in place

Mealybug there will come a day when your care collapses (accident, mh crisis) and then emergency care will be needed for your OH. Better to get social services involved now and find a nursing home for him that you are happy with. You WILL feel guilty and upset but the relief of giving over responsibility for his care will be overwhelming. You can visit him in a nursing home, every day if you want (in normal circumstances), so you won't be deserting him. He will get the care you give plus conversation, entertainment if he can participate, meals to his requirements, but, most important, he will be looked after during the night while you get some sleep. I did this with a relative, caused me much pain, guilt and tears, but I absolutely and honestly think we are both better off now. Give yourself credit for the many years you have nursed him because you have done enough. Be firm with yourself and investigate the way forward, get some advice from your local Carers' Centre, they are staffed by wonderful people.
Sorry to hijack your thread Betty, I think it's easy to hide dementia from carers as the conversation is easy as it's in the present 'What do you want for lunch today?', 'What's the weather like?'. More difficult for you if you're saying 'Gt Uncle Jack died, do you remember him?' Part of the aggression is because no, they have no idea what you're talking about and they know they should. My relative at the care home is like Jekyll and Hyde but fortunately remembers very little.

It sounds as if you have done your best, mealybug and if I am being brutally frank, your DH's life is ebbing away but you still have a life and deserve to enjoy what you can. You can't change his situation, and a caring nursing home will do as much if not more than you can as there are more staff and they have trained skills. You could see him every day - you won't be dumping him there and forgetting him - and then you will have something to talk to him about and he may well respond better to a happier you. I would get that organised as soon as the situation allows. In the meantime, you can spoil yourself with some small treats and think that a better outcome for you both is in sight. Don't be put off by anyone - this is your life and your decision.

mealybug, spill it all out to your doctor about how you're feeling!

Thanks for the support everyone, I will look into nursing home care but at the moment in my area (the North West) they are not accepting any new patients unless it's an emergency xx

Have you checked if there are Admiral Nurses in your area Betty65 they support carers as well as the person with dementia and would be able to help you.

It has certainly been difficult for you Mealybug and I don't blame you one bit for feeling as you do. You need to be honest with your family and tell them things are now too much for you to handle alone and there is a need to look at alternative care. You should not feel guilty as you have done so much for your husband already, you do deserve some life of your own. If he was in a nursing/care home you would be able to spend quality time with him rather than being stressed and tired all the time.

mealybug, you deserve a life. Put him in a home! The brain tumour and other illness's mean he is tormented by the situation he finds himself in but you don't have to waste your life...my opinion. thankfully I live alone.

mealybug
You know you are at breaking point.
My mother tried to look after my dad at home. It turned into a 24hr job with carers coming in. I stayed over to help but he would be on the go all night.
Our excellent dr. told mum she would be collapsing if this carried on. She had heart problems and dad had heart and stroke problems and dementia. We found a very good nursing home for him after looking round several. He lived happily there as he felt secure then died 4yrs later.

Long post but I'm going to be brutally honest, I don't want to be a carer anymore. The rubbish I've put up with over the years would try the patience of a saint. Hubby started with an anxiety state soon after we got married 46 years ago so never worked. Had a brain tumour in 1993 and another one in 2008, shortly after developing Lewy Body Dementia. He used to have hallucinations, paranoia, tried to throw his frame through the window and glass door because he thought the house was being set on fire by next door. He said horrible things to me and told the Mental Health team I was taking multiple men upstairs and I didn't do anything for him, yet when carers came or nurses he was sweetness and light. He's now bedridden after numerous visits to A & E with Sepsis or Aspiration Pneumonia and I've had enough. My day revolves around feeding him by hand, organising carers, Doctors calls, District Nurses etc with no time for me. I think I've done my share but the only alternative is to put him into a nursing home but the feeling of guilt stops me. Everyone thinks I'm ok and happy with my caring role, but I'm not. My dtr isn't much support and will ask how he is as long as I don't ask her to do anything, so it's just me. I feel like I'm in prison whilst he gets waited on hand and foot, I know it's not his fault but when you lose your identity and your ability to have a life it's really hard.

You need to discuss this with your mother's GP and with her carers.

Even although she keeps up a facade with them, they are used to detecting signs of dementia, so once you have alerted them to your concerns, they should be able to judge the situation.

Could there be other reasons for her confusion? Dehydration, urinary infections, medicine?

Get in touch with the Alzheimer's association too. You need support in dealing with this.

Contact a local carers centre, Carers Trust who will offer support and signpost you to anything else relevant.

I have the same problem with my mother although it isn't me who gets the unpleasantness most of the time. She also is in complete denial about what she does regarding food and drink preparation, handling her medications, etc. She does absolutely nothing but if you listened to her telling the assessors what she does, she'd have them believe that she is the Domestic Goddess. She can pass their mini tests for Dementia because she is intelligent enough to find clues in her surroundings and there is nothing wrong with her eyesight so when they ask the date, she is perfectly able to see it on their computer. The only thing she struggled with was what she couldn't get clues about but they said that was ok. They don't see the hiding of hygiene protection, having to take her insulin away because she forgets she's had it, the abuse because she "knows" you haven't told her things and there is no way she has been incapacitated for the last 10 years, its only been a couple of months. I feel your pain.

All comments very familiar, eventually after all the above and more. Doctor, Police, mental health, a broken hip; after falling on the ice in the middle of the night. 3 months in assessment hospital, where she broke most of the equipment in her room and threw her food cutlery and underwear out of the window A lovely small care home agreed to have her she spent the next five years being cared for by the most wonderful team who put up with her behaviours laughted with her and made her feel safe and loved. I hope your mum finds a safe space too