Mother with advance dementia

So hard. No easy answers, are there?

Probably time to reconsider a care home for both your sakes. Sounds like your mother needs specialist dementia care. Will this cause problems with regards to your living arrangements though ?

Anne, you need to contact social services ASAP and get some help with caring for your mother. She should be entitled to some care, even if she has to contribute financially. Ask for an urgent assessment. I was in a similar situation a few years ago, though my Mum came to live with us. Also, the Alzheimers website is very useful. Good luck.

It's possible that some of her symptoms - like the hallucinations - may be due to a urine or other infection. Have you had her checked for this? Obviously this won't make any difference to other symptoms.

As others have already said, get on to Social Services and get yourself some help. If nothing else you might be able to have help with bathing etc and the possibility of a day centre so that you get a break. This might, also, lead on to an assessment for a care home.

When my mum was alive I found the Carers Uk forum to be really helpful. People were able and willing to offer explanations and advice and shared their feelings too.
There are some homes that offer daycare for Alzheimers patients. Might this help? Or regular respite care.
I think you need a social worker to help with this.
Wishing you well, Anne. Its an awful situation.

Cressy

Probably time to reconsider a care home for both your sakes. Sounds like your mother needs specialist dementia care. Will this cause problems with regards to your living arrangements though ?

I agree with Cressy

Anne get in touch with your GP tomorrow, or failing that get in touch with adult social services online or by phone and ask for an assessment.
I think my mum is just starting with this behaviour it is beyond difficult. She believes people are coming into her flat shouting hello then going back out again. My mum has carers 4 times a day but manages to live alone, for now anyway.
Your not equipped to deal with this plus your not well yourself and like me late 60s it’s far too much.
Please get help before it makes you very ill, that’s not what your mum would have wanted. Good luck.

Assuming you have no outside help you need it. One person can’t manage alone when caring for someone with dementia. You need to contact your mums gp to get her checked for any urine infection which does cause confusion and also contact local social services and Alzheimer’s for advice and support.
Is your mum receiving attendance allowance?

Don’t beat yourself up, it’s so hard especially if you alone but it’s not your mums fault, dementia is a cruel disease. I know, my mum had it too

Please get help. I went through this Please also start to find ways to destress yourself and get a bit of space everyday even if it is just 15 mins where you don't worry about what needs to be done next. The awful thing about this life event is that it does not get better until you get good support in whatever way you can. In the end I made endless phone calls, told them how it was affecting my health and how she needed professional help. A lovely lady came in everyday for an hour just to bath her and chat to her. She was a professional and it gave me an hour's respite.

Op

You tried, it is time to look for a care home.

You are not equipped to deal with this- nobody is unless they are trained for it and have the proper tools

Just to clarify it is really not advisable to go it alone and place someone in residential care without first contacting social services fir a full assessment. Even if you pay the full rate you would then have security and some benefits not available to those who are just moved in by family.

Many of us have been where you are with parents, sometimes with a spouse, so you will get plenty of help, support and hand holding on here. I seriously think you need to start looking for a care home for your Mother, sadly, we all know this dreadful disease only goes in one direction, and frankly, suspecting urine infections ( which do affect mental state) is neither here nor there, your Mother has dementia. Contact social services elderly care straight away, but contrary to what some have said, you do not need to involved SS in any way if your Mother is self funding. It is then a case of visiting care homes and finding one that you think is suitable. Good luck, it may get worse before it gets better, but you will come out of this.

I totally agree with the others - please ask for help, there's no shame in it. I understand how you feel, as I lost my mother to dementia, but things were, in effect, taken out of my hands as she was admitted to hospital after being found wandering late at night. If she hadn't eventually agreed to go in voluntarily, they would have committed here, as she'd become a danger to herself. Caring for someone in that stage of dementia is incredibly difficult and takes its toll on anyone's health and mental wellbeing. You need to think of yourself as well as what is best for her.

My sister in Canada has advanced dementia and I first heard of “sun downing” or whatever it is called because that is what she suffers from- gradually getting worse as the day goes on. She also had hallucinations caused by Charles Bonnet Syndrome where as I understand it, the brain cannot cope with the “message” it receives from the optic nerve and substitutes something else, often alarmingly so. She has now lost the sight of one eye and the other is very weak.
My BIL struggled to cope at home (he is 81, like her) and she has now gone into a lovely friendly caring care home , where the staff ratio is excellent and she is greeted by all by name. Because she is in a wheelchair, they wheel her to the reception area with all its comings and goings and people chat to her. She has no idea who they are, just friendly voices and faces.
Do not struggle on OP, you need support and care and she needs more than you can provide. Please seek help and look into either daycare or residential care as a matter of urgency.

I heard of sundowning when my friend's DH started doing it, wandering around and sometimes breaking things too. She is coping with him most of the time at home but she does have help.

A care home might be better for your mother too, Anne and certainly you will make yourself ill if you continue like this.

I hope you can find somewhere suitable.

I am in complete sympathy Anne107. My mother is in same condition as yours but she has carers and I don’t live with her. I definitely couldn’t manage if I did. Sadly there comes a time as you describe, where you have to prioritise your own needs, or you sink.

As previous advice, get social worker involved as a matter of urgency, so your mother can be assessed and appropriate care put in place.

I hope you have your own place to live. I have know a number of adult children start caring for elderly parents, as you have, not realising what an intolerable burden it can become, as parent’s condition deteriorates.

I brought my Nan to live with me for the last three years of her life with dementia It was soooo hard with three children to look after too but I promised nan faithfully she wouldn’t go in a home and she didn’t but it was so difficult She also ‘saw’ things
Often small children one was trapped under the settee I went along with all the ‘visions’ and used to pretend to rescue the children and pop them home to their parents She also whispered to me one day that there was a killer (a man) sitting in the chair opposite I pretended I was having a word with him and talked to the empty chair to tell him to please go home …he went however I m glad I managed bless her one day as clear as a bell she held my hand and said darling I don’t mean to be like this then she went back again
When my mum became the same I was in a different position in life working full time and helping with two grandkids who d lost their daddy to cancer i was also late 60 s I did all I could to keep her and Dad together but mum was much more feisty and difficult and Dad was becoming ill with the worry so she did go into a care home Poor soul never really settled and spent seven very difficult years I visited every single day after work sometimes she loved me sometimes she hit out it was soul destroying
Please please take all the help you can get and if possible find her a care home without guilt somethings are just beyond us
I so often look back and wish I d done things differently but we do what we can at the time
I ve never heard of sundowning
A big hug sent to you Anne

So sorry about your sister Maw. Bluebelle you are a star. Farzanah,so sorry about your mum and a gentle hug to all those who are exoeriencing the distress this cruel disease creates.

I havnt heard of sundowning either,think it must be an American term.

I havnt heard of sundowning either,think it must be an American term
I'm not sure, I know that I heard it a couple of years ago and it is a known phase of Alzheimer's and dementia.

Sometimes you might see changes in the person’s behaviour in the later afternoon or towards the end of the day. During this time the person may become intensely distressed, agitated and have hallucinations or delusions. This may continue into the night, making it hard for them to get enough sleep.

This is sometimes known as ‘sundowning’ but is not necessarily linked to the sun setting or limited to the end of the day. Sundowning can happen at any stage of dementia but is more common during the middle stage and later stages.

It's distressing for those who suffer and for carers too.

I’ve not heard of sundowning either. My mother’s behaviour can be erratic and difficult at any time of the day or night. It’s sometimes linked to any pain she is experiencing, which she seems to feel more acutely. Can be so challenging for the carers and I feel sorry for them as she can be difficult to manage. She would feel so embarrassed if she was in her right mind, and it’s sad to see.

I'm so sorry to hear of your and your mother's situation Anne.
If your father or your mother have been in the military you can get the help of an Admiral Nurse through the British Legion ( they do it for the spouse of anyone who has served too). I had this and couldn't have managed without it. A wonderful nursing sister came very frequently.
Age Concern gave me useful help and advice too.

P.S. I had plenty of wonderful support from grans on here too.

Sundowning isn’t an American term - I often read it on a forum for carers of people with dementia - I used that forum for more years than I care to remember (my mother and FiL both had dementia) until 2015 when my mother died at 97.

OP, having been there, I honestly think you need to contact social services urgently and tell them you are simply unable to manage any more and it’s time for a care home. You will need to be very firm! Don’t let them fob you off - since you’re on the spot it’s easier for them to let things slide.

You have done your best but it’s now just too much - your own health will suffer - it probably has already.

You should also see your GP and lay it on thick - s/he should be able to intervene with SS on your behalf.

I have been where you are, it is impossibly hard. In the end we had to find mum a care home. She seemed happier there, with specialist care and I could be her daughter again instead of her carer - I wish we had done it sooner