Exhausted with it all ...

[Cornflakegirl]

Hi all,
haven't posted for a while. I first posted a few years ago ... my dad died suddenly in 2017 and I've been dealing with my mums slowly deteriorating memory ever since.

She still refused to admit there's a problem and since lockdowns 1 and 2 things are getting worse. She now for the last 6 months phones me to ask when she's going home. She's lived in her current house for 48 years - since I was a baby - and can't remember this. I remind her and show her pictures of her/me/ my dad and then she seems to accept it. I should be working right now but have just spent all morning sourcing photos which show her current home in order to make a memory book for her.

Recently she's also started talking to 'the girls' - photos of me at my graduation and my sister (who died when she was 5). At first I though she was kind of joking with me but then asked if she could give them one of the snacks I'd bought for her. She laid a cereal bar infront of each photo and left them their. The photos had been brought in from the dining room and she'd set them up facing the TV.

In the past it's always been stuff about forgetting my dad is dead but it's moved on to other stuff now. When I try and suggest going to GP or getting some advice she gets really upset/nasty or agrressive as she doesn't see that anything is wrong.

Day to day she still gets up, gets dressed and puts her make-up on but I've noticed she's been wearing the same jumper for a month now. If I offer to do washing or help her she refuses.

My partner and I do all her shopping, my partner takes her to hairdressers once a week as she can't wash her own hair (due to arthritis and osteoperosis) and I deal with all her finances, take her to any appointments., When she had her second covid jab we were leaving and she had just waited the 15 minutes and she tried to get back in the queue as had forgotten having it just 20 minutes before.

I'm at breaking point. I also have an 8 year old son who hasn't been able to go on holiday for 4 years as I'm scared to leave her for more than a couple of days. She doesn't want a cleaner, carer, or even anyone else to pop in and help. She takes any suggestion to get help as me saying that she's mad and her house is dirty. Then she tell me I'm upsetting her and that one day she'll be dead and I'll be sorry I was so horrible to her. I spend every waking hour worry about what will happen next, what she'll say and how I can deal with the next meltdown as well as having to take my son to school and do my work.

I have no living siblings and while my partner is great, it's not his mum so I feel it's all on me. I don't know what to do anymore - how can I get help for her and myself if she just doesn't want it. I feel like I'm failing as a daughter, as a mother and as a partner right now and am getting anxious and depressed.

Any advice would be much appreciated Xxx

 

[nae sporran]

How awful and hard for you and your family @Cornflakegirl. I've seen my partner confusing photos of wildflowers I've taken and thinking they are real, she had a phase of looking at the picture of her mum and thinking she was still alive. Your mum is a lot more confused that than though, but you are not alone and you are certainly not failing anyone.
Can you write a letter to her GP explaining everything and maybe even take her in for a routine health check up. I have read of the latter being tried, though not sure if it helps you. Social Care maybe won't act if your mum won't consent, but it may be worth letting them know anyway.
You will probably get better advice on here, but the dementia connect helpline is also available to talk to someone. Details at https://www.alzheimers.org.uk/dementia-connect-support-line

 

[DreamsAreReal]

Your Mum sounds very much like mine. Refusing all outside help but wanting me to do everything. Something has to change and it’s not going to be her behaviour because that’s dementia*, all you can control is your own behaviour. Thinking about possible future problems will give you anxiety (and make existing anxiety worse). Learn how to stop worrying about “what ifs” and try to concentrate on the things you can control/change/help right now. I used to be a terrible worrier and I had to learn these things in CBT sessions. It’s saved me a great deal of anxiety. There are freely available resources on the internet if you do a search.

*This is not strictly true, she could have a UTI or other infection (mine gets really delusional with them) which can be cleared up with AB’s. Try not to argue with her delusions, if they’re harmless ones - easier said than done, I know - I’m still working on this! I agree with the suggestion above, contact her GP with your concerns - hopefully if you’ve got a decent one they’ll have some ideas. Keep posting and reading here - the other more experienced posters are very helpful indeed. Best of luck!

 

[lemonbalm]

Caring for someone with dementia can be all consuming and incredibly stressful. You can end up in a state of perpetual panic. When I was looking after mum (she wouldn't accept any help either, it was just me) I would often take a deep breath and ask myself, sometimes out loud, "OK, has anything really bad actually happened here?". It may sound stupid but it really helped me keep a sense of proportion and deal with just about anything. Occasionally, something really bad had actually happened and it helped me deal with that too. It just gives you a moment to get your act together. I used to spend every day at my mum's and tell my husband that I was off to my parallel universe. It is rather like being in a different world and seeing it as such can be helpful too, like slipping into a different gear.

I think the suggestion about writing to your mum's GP with your concerns, a diary of anything "odd" which your mum does is probably a good one. It might just get the ball rolling. Others will be along with more practical advice.

In the meantime, you're certainly not failing. You're doing something extremely difficult which takes a lot of strength and courage. It's ok to drop your standards a little at this point. If your mum's house isn't very clean, it's ok. I used to scrub the kitchen and bathroom whenever mum wasn't looking, make sure the food in the fridge wasn't poisonous. Anything that isn't dangerous can be tolerated.

 

[Miss Elli]

It's like reading my story, I have been going through the exact same experiences with my Mum and it can be a nightmare - it's like we are stuck in groundhog day, every day is bad but some just not so much as others - my Mum's second care package started today and as expected she refused to let them into her house even though I have this time said it was a friend of mine visiting to check Mum was OK ... if only they would help us to help them.

If your Mum hasn't been diagnosed you definitely need to get that sorted, you may just need to lie about where you are going or insist on a home visit, I actually managed to get 2 GP's out to Mum's last month because I was so concerned about her health and wellbeing. Get Social Care involved, they can't force anything onto your Mum and frankly I have found them a bit of a waste of time but at least she will then be on their system as a vulnerable adult.

Interestingly my Mum says the same things about her home of 28yrs, 'when can I go home' or 'do the people who live here know we are in their home' etc - it was actually explained to me that it can be a sign that the person with dementia deep down no longer feels safe in their own home and surroundings because of their behaviour - I found that really sad as I had put it down to pure memory loss. Mum also recently ended up in a loop that lasted a few weeks were she kept telling me people in a photo were laughing and staring at her.

Have you got LPA for both Finances and Health, if not and if you can get your Mum to sign paperwork try and get them through online PDQ, it's difficult enough dealing with running someone's life with LPA in place but almost impossible without.

Try to remember to take care of yourself as you won't be any good to anyone if you make yourself ill with all this. Sometimes I decide to take a step back just for a couple of days, stop taking the calls and have a break from visiting and try to rest the mind and pretend my life is back to how it was before I had an 85yr old toddler to worry about : )

Not sure if I have been of any help here but sometimes just knowing others are going through the same thing really does help.

 

[Moggymad]

@Cornflakegirl you are not failing anyone. These early stages come with many challenges that we have to adapt to & learn to get around issues by being a bit sneaky at times. The way you describe your mum was so like my mum, except it wasn't photos facing the TV it was all her soft animal toys. One in particular sat on her lap & "shared" her meals.
When I needed to sit down I used to sit the displaced toy on my lap!
It was exasperating to get the constant "I don't live here do I" conversation despite constantly showing her her pictures on the walls & clothes in the wardrobe, she would reluctantly accept my explanation only for it to start again shortly after & later on the phone to me at home. In fact it was this that eventually caused safeguarding issues that resulted in mum going into care. I never found a way to stop this as it became part of her anxiety.
The dirty clothes issue, I used to rummage through her wardrobe & drawers when she was distracted with a neighbour visiting ( in your case at the hairdressers) & always put the wash load on to stop mum retrieving them from the machine. Or I'd hide them in a bag outside & take home to do. Same with food that had gone out of date I had to put in outside bin not indoor bin otherwise she would moan & get it back out. Check flannels are definately getting used. Again my mum insisted she had washed but everything was dry in the bathroom.
We managed to get mum to docs on pretence of something else...GP was on board with this.
There are so many things that you have to be quite cunning about but you know at the end of the day it's all to help your mum. We did eventually get a cleaner for her but it was to help me so I had more time to sit with her or take her out.....

 

[Palerider]

I hear you, and it is hard, because we care about the person who is no longer able to reason their situation. My mum was the same, refusing to let the carers in, and they would have to peer through each window to check and see if my mum was ok -that she hadn't fallen on the floor. This went on for months into what became accepted as a 'welfare check' -but that was never the idea, they were supposed to go into the house and be able to assist mum with her tablets, getting washed and dressed and her breakfast. In all it ended in disaster, becuase as much as mum loved people she didn't understand anymore their purpose, what was supposed to be help became an enemy to her. Not long after that she started to wander when I was at work some 45 miles away and one day she wnandered too far, that was her last ever journey on foot.

In the end my mum in the last meanigful conversation we ever really had said this: 'I don't want to be alone anymore' but with that admission was a world of confusion to her, because not being alone meant something impossible -to be at home with her parents.

I honestly can't tell anyone what to do, because I waited until mum could no longer obviously cope before having to place her in a care home. But as a carer if we can no longer do what we should then perhaps we have to re-think where we are.

Care homes are not the perfect solution, but they are the best of a bad situation.

People will tell carers to care of themselves as best they can, but that is not possible when as a carer you are trying to deal with everything thrown at you at once, caring for yourself when you are battling caring for someone with dementia is the last thing on your mind and you will do amything if that love is strong not to let them down

 

[Whisperer]

Dear @Palerider

I read your last few words and they sum up the lot of so many Carers. My mum died of heart failure in early February after nearly six years of me caring for her with Dementia. I lived with mum for many years and willingly took on the increasingly demanding caring role. Everywhere I went or read the advice was take care of yourself, which at one level is self evident. That said how does this advice square with COVID-19, lockdowns, carers groups and day centres closed, the risks of strangers in the house bringing in the illness unknowingly? The blunt answer is it cannot. Only after mum was gone did I realise how physically, mentally and emotionally run down I had become. The last few months we were house prisoners, hardly managing little local walks anymore.

Now let me try and offer some advice based on my own experience to @Cornflakegirl and @Miss Elli. Sorry if I get things wrong but here goes. The really difficult thing is Dementia does not progress in straight lines. You have to judge as best you can when certain lines have been crossed. That said the loved one may step back behind them again next day or hour. Let’s consider wanting to visit long dead relatives, or at least believing they could ring them. This happened for my mum regarding her dad. He did in 1964, use to work nights so was sleeping during the day. Initially in her illness mum spoke about him a lot, telling me things they did, but accepting he was dead. Then mum would start to place me in those memories, long before I was even born, asking me why grandad had said or done something. Mum had invited me into her fractured and confused memories. All I could do was to step into them and accept my allocated role, no matter how strange that initially felt. In the end mum thought I was her dad some mornings when I gave her pills. I just spoke to her gently and let my familiar voice bring her back to me. Other times I was told we had to be quiet during the day or we would “wake dad”. Mum was 89yo me only 62yo and her son. I never asked how old grandad was in those circumstances, but I estimate 125yo and still doing the night shift at the brewery. I just went into the world mum presented. At present your loved ones are at the relatively early and confusing stage. One day okay ish the next in a confused state. Matters will get a little easier to handle as they slip more and more into their confused memories. Sorry but to reduce your stress you will at some stage have to accept their understanding of matters and literally go with the flow.

Secondly a thread I read several years ago might help with the confusion around who owns the house they are living in. Do they know we are living here, as this is not our home? There are several variations on this theme. I suggest when it comes up take a deep breath and introduce a “love lie”. Yes they do know and are grateful for us keeping the place safe for them. They have asked can we do so for a little longer. Remember the short term memory failing will help as what you say will reassure then promptly be forgotten. Follow up in that calm moment with distraction eg cup of tea, never guess who I saw today, etc. I felt uncomfortable doing any of this the first times, but it worked and the stress level went down. You are not deceiving your loved one, you are helping them in their new reality. It is hard but go with what works. Have you read the “compassionate communication” guidance notes?

As I say the above is advice based on personal experience. Feel free to ignore it, or take parts that work for you. One last point. Always remember Dementia does not do logic very well. You are part of the solution not the problem. You may get some things wrong but that is the human condition. This forum helped me immensely over the last few years. Please keep posting.