Struggling with all the battles

[Natalie J]

Hi folks,

I woke up this morning feeling pretty hopeless. I can accept a lot but can't cope with the constant sense of being dismissed, not believed, blamed, not understood etc. I can feel I'm starting to withdraw / retreat / etc. and know it's not healthy but I feel the effort and anguish of trying to get people to believe me when I tell them things are wrong (when I give examples of how I see my elderly relative is not coping or able to care for herself), and on the occasions I do get someone to take me seriously the the disappointment and frustration of when they don't follow up or do what they say they will and I have to start all over again, is just too much for me. I'm starting to question whether I am the problem as that's what I perceive people's reactions to imply.

I'm trying support my great aunt who has terrible short term memory and is in denial and not coping. She has carers come once a day but it's not enough. She has no diagnosis and won't seek help, the care is self funded and the care company won't increase the care unless she asks as they can't because she pays for it and she is deemed to have capacity.

She fainted while I was out with her on Thursday and was taken to hospital and I collected her yesterday after lots of test showed nothing really wrong physically and although after loads of insisting on my part she was given a moca assessment but other than finding out she scored 23 I've not been able to get any other feedback on what that means. My mum came over to help on Friday as it was all getting too much for me, but it soon got too much for my mum as well and she started yelling at me and telling me my time management was appalling and i needed improve my organisation ability and not get over tired and hungry etc.

I specifically asked her to help me while she was here by checking in with me throughout the day to see if I needed anything to eat or drink (I get low blood sugar and then feel unwell if I don't eat enough and as I was finding it almost impossible to keep up with all the phone calls and tests and ward changes and appointments needing rescheduling etc. I have had barely any sleep and I am exhausted so I knew I would loose track of time and the things I would most likely forget would be my own needs. We have both been staying in my GA's house which neither of us are overly familiar with as she lives over an hour from me and a day's travel from my mum, and it is all very haphazard and dirty etc. even making a cup of tea or a sandwich is grim). I asked my mum to take responsibility for the refreshments etc and to remind me of a few things but she didn't and then started yelling when I told her I wasn't feeling well as I hadn't eaten enough, and then I got even more stressed and although I got through the rest of the day yesterday and I have got my aunt home now and my mum is leaving today, I'm in a terrible state now as all the yelling my mum directed at me (I asked her repeatedly to stop but she genuinely things it's the only way to get through to me and can't appreciate the harm it does - I can try to explain until I'm blue in the face but after 40 years of this I know it is futile, it's just how she operates) has destroyed the last bit of sanity I had left and although I still have a ton of things to do, still have tons of concerns about my great aunt's situation I feel like I have retreated a bit into a world I just feel totally disconnected from as everyone else seems to be on a different wave length to me.

I am sick of trying to get everyone to listen to me and to take on board what I am saying and it's just doing my own head in basically.

 

[Violet Jane]

I think that you should consider stepping away completely. You are not responsible for your great aunt and the lack of support is affecting your health. The only complication would be if you held powers of attorney for your great aunt. You will have to work out how the carers are to be paid though.

I would contact your aunt's GP and Adult Social Care and inform them of your concerns about your great aunt and that you are stepping away for your own health. Tell your mother that you are stepping away. If anyone contacts you about your great aunt (e.g. the hospital or her neighbours) tell them that you can't help and that they need to contact Adult Social Services.

Consider whether you want to give your mother's telephone number to anyone who contacts you about your great aunt.

If you want to remain involved you need to decide what you can and can't do and stick to it. If you don't set clear boundaries you will be drawn in more and more to an unsatisfactory situation which will take up increasing amounts of your time. When a person doesn't have enough professional care for whatever reason other people such as yourself fill in all the gaps and end up running the person's life completely.

 

[Grannie G]

Welcome @Natalie J

It is obvious too much is being expected of you and I agree with @VioletJane about stepping away.

I just want you to know my husband had a score of 23 and he was diagnosed with dementia. You are correct in thinking you are not being listened to.

 

[Lawson58]

Gosh, such a mess. How did you ever end up in this situation?

You are obviously stressed to the point of carer burnout so whatever you decide to do, it has to be about your own welfare FIRST.

Your relationship with your mother sounds pretty dire but why are you the one doing the caring when she thinks she knows how to do it better than you anyway?

It seems to me that you have two options, neither of them easy. In my very humble opinion,you need to inform your mum that you are not going to be your GA’s carer and that she will need to be ready to take over in whatever time period (a week?) you think is best.

The second option is to insist to your aunt that unless she pays for extra help, you are going to move back home. She is deemed to have capacity and it may be difficult but I think you are short on choices.

You need to take matters into your own hands.

 

[SherwoodSue]

Hello.

I really feel for you. You seem to really struggle with executive function? This is something familiar to me as it’s an issue for family members. That would explain the extra difficulty in coping with care agencies, NHS etc. Seeking help from others to make sure you eat and drink maybe surprising to some readers , but my daughter in law has an app and alarms on her phone to do just that.

This leads to my main question, how did the family member perhaps least able to support great aunt come to have that role ?

I agree with everyone here. It’s not nice to see a house messy but the carers ARE going in and your Aunt does have the choice to increase visits. Yes, there is an issue about your aunts capacity to decide.

It’s been said before. Take a breath. Write down all the reasons you are concerned about your Great Aunt, send it to her GP
You need to step back.

I do not know how old your mum is or if she has health issues?
I am concerned as to how your mum frames your difficulties

Among the young adults I love are those with ADHD, those with high functioning Asperger’s and OCD .

As their houses untidy? Do they struggle to organise regular home made meals? Do they get into a muddle over family appointments? Yes to all the above.

Have I ever said ‘ your time management is appalling!’ ‘You need to improve! ?

No. Never. Where was the thankfulness for trying to help Great Aunt in the first place ?

Time to double up your self care strategies. Reaching out here was one such strategy. Well done.

 

[Natalie J]

Thanks every one, if I get a chance I will respond more specifically to the advice and questions, but I feel a bit of a release having been heard, so thank you very much for the responses.

I have had a chat with my mum this morning and she was in a better frame of mind after having been to bed and it being a new day and was being a lot more helpful - more hugs and listening this morning and no yelling. This morning she was able to get where I was coming from better, but having said that as soon as she is too stressed and over tired she will revert back to yelling. Basically I am the only family member geographically close enough to be able to visit more than once or twice a year, and the others either have their own challenges and limitations or other elderly or very young family members that they are already caring for. So I'm not the family member least able to cope, I'm probably the only one that could do as much as I am.

I come from a family where each generation tries their level best to do better than the one before and we all feel guilt and feelings of inadequacy because we wish we were 'better' people, but the starting point was so low (a few generations back the neglect and poverty was as bad as it gets) that all of us lack in certain areas the skills and confidence that other people that have been fortunate enough to have had better role models, or to have been taught better coping strategies would take for granted - or who have had the insight opportunity and time to devote to 'levelling up'. We are often unaware of how poor we are at certain things and that is because you don't know what you don't know and if you don't have people showing you better it is very difficult to do better. None of us have any conditions or diagnosis but there is a certain amount of background 'trauma' that gets triggered easily. However, the people we come into contact with including close friends perceive us as very capable most of the time (I only forget to eat when I am totally overloaded and my routine has been totally obliterated for example) - but none of us cope well with stress or demanding situations like this and although we all try to support each other, despite out best efforts we often make it worse at times, but at other times we need each other and can help and the point is we have no-one else. Friends and professionals can only offer so much. After that we are on our own to muddle through as best we can.

One of my many problems is managing my expectations. I want to fix everything and find it distressing when I can't and the more tired I get the more of a problem that becomes. My perception and ability to prioritise is clearly part of the issue but there is no magic cure for that.

The last few days have been extreme because of my GA passing out while we were out for lunch (I didn't realise it was just a faint due to drop in blood pressure, and I honestly thought she was dying at the time and so it was absolutely terrifying for me - I was already exhausted myself, away from home, in the next county, not even knowing exactly where the nearest hospital was (in a city another hour away which I am unfamiliar with), and it's the first time I've ever been in the hot seat when a person I was with passed out so overload in terms of trying to figure out what was happening and what to do, I've never even had to take anyone to hospital before and was having to ask for advice even on simple things like what I should pack in the bag I needed to take in for her because I literally had no idea what people get in hospital like whether they are given soap or nightwear or toothbrushes or anything like that - of if I brought those things whether anyone would help her to use them or even remind her I've brought them in for her).

I volunteered to be her attorney because noone else could / would. I don't have it yet as only filled in the LPA forms and sent them off a couple of months ago and it takes ages.

I have approached her GP and begged hospital doctors to do more, listing my concerns over an over already. I don't feel I can come up with a list of what I can and can't do for her and stick to that, because every week something crops up that had never occurred to me would / could be an issue. I know social services would only step in if I let things get far, far worse than they already are and even then their first thing would be to try to get me to do more (I have worked with them a lot in a professional capacity and usually find that very depressing and disappointing as well).

 

[Collywobbles]

That does sound so overwhelming and clearly your mind is racing with the weight of those responsibilities. Maybe a few odd observations might help?

Firstly, remember that people are admitted to hospital as emergencies every day. Thousands. Nobody took any harm because their preferred nightclothes or toothpaste arrived the next day. Just take it one step at a time. In my experience, my parents - who’ve each had emergency admissions over the past few years - were taken to hospital in whatever they were wearing at the time, and given a hospital gown in A&E so that there was access to them for examinations, monitors, cannulas etc. Once they were admitted to a ward, we were able to take in their own night clothes and slippers. So there was time to go away and gather things in a calm way. In that situation washing and cleaning teeth wasn’t a priority, but once the crisis had settled, they were expected to have their own washbags with their own toothpaste, toothbrush, flannel and soap. My Mum had undiagnosed dementia complicated by hospital delirium and once the nurses realised she couldn’t figure out how to wash, they helped her. However many wards are very busy, so it might be left to visitors.

With Social Services, although you may not get any immediate help, it’s worth contacting them with your concerns now - for both your GA and yourself - so that you’re at least on their radar. Maybe you could do it in writing (email or letter) copying in your GA’s GP. It sounds like they will inevitably have to be involved at some point, and having some kind of record on their books will at least kick that off faster when the time comes.

Sadly it’s up to you to set and keep boundaries, at a point when you’re least able to do so. You should make it clear to them that you’re already approaching carer burnout and when you’re finally forced to step back for your own sake, there will be serious safeguarding concerns for your GA which they will have to step into. It’s more about waving the flag than expecting them to do anything immediately. There’s always the outside possibility that you’d be pleasantly surprised. And if they do nothing, then at least you won’t be disappointed.

Sending you best wishes.

 

[Violet Jane]

One of the things that you have to learn when you are dealing with dementia is that you can't always fix things and that you often end up having to accept unsatisfactory situations or the least worst option. This is for various reasons: (1) the person's lack of insight into his/her condition and need for care, (2) the challenges of getting a diagnosis, (3) the slippery concept of capacity, (4) Social Services' dogged belief that people are always better off at home and the very high bar for them agreeing that the person should move into a care home, (5) SS' disregard for the carer's welfare, (6) SS' budgetary constraints and (7) conflicts between family members about what care the person needs and, very often, the burden of care not being shared equally - very often there just isn't the capacity within the family to provide enough care for a person beyond the early, easy stages. There are others....

You have to let go of the ideal and accept the good enough or possible. Sometimes, even the good enough or possible isn't achievable. You are very often dealing with crises and muddling alone. It's important for carers such as yourself not to set your expectations as to what you can achieve too high. Be kind to yourself and proud of what you are doing for your GA.

Another important thing to remember - and this isn't talked about enough - is that people with dementia are often unhappy and you can't always make them happy however much you do for them. It's the nature of the disease and their inability to occupy themselves as their cognition declines, which makes them long for company which can't be available at all times. This is a particular issue for people living alone as, sadly, many friends and family members drift away.