Feeling Helpless re-lack of diagnosis

[Mousehill]

After reading all I can get my hands on, I've come to the conclusion that mum is in Stage 6 of dementia.

She needs help dressing, going to the loo and her meals have to be easy to eat. She needs an apron on while she eats and help initially guiding her hand to the spoon.

She sleeps probably 60% of the day and can't walk more than about 5 yards (with her frame) She forgets her way around the house she's lived in for over 50 years and can't recognise her regular care team about 70% of the time. I've realised she can't be left alone more than about 1.5 hours without going into really steep decline and she can have episodes of absolute confusion and anger and paranoia about money, doors (are they locked? Where are they? Why has someone moved them?) but other times she's happy and chatty.

I've been looking after her now for 2 years and although the GP has done blood tests and adjusted her thyroxine doses, he's never given me any advice on dementia, other than to say it 'looks like' dementia but it 'might not me'. When I ask what else it could be and how we get a proper diagnosis, he is non-committal and says mum would need to attend Memory Clinic - which she won't.

My brother has POA and he's not bothered about a diagnosis, but I am because I feel now is the time we need to be having pretty serious conversations about her future care and what her outlook is. I feel we're getting near to the end of the road (or are we? Will I still be spending around 40 hours a week with her for the next 10 years? What will OH and I live on if I am?!) and still no real answers. I've recently been diagnosed with an auto-immune disease so I don't honestly know what the future holds for me and I just feel scared and helpless. I want to plan ahead.

I've made an appointment to see her GP by myself this week. Any tips on how to manage the conversation? The boss of the care agency has also been in touch to say she wants to 'review' mum's care and I'm worried now what she's going to say.

 

[Avis]

After reading all I can get my hands on, I've come to the conclusion that mum is in Stage 6 of dementia.

She needs help dressing, going to the loo and her meals have to be easy to eat. She needs an apron on while she eats and help initially guiding her hand to the spoon.

She sleeps probably 60% of the day and can't walk more than about 5 yards (with her frame) She forgets her way around the house she's lived in for over 50 years and can't recognise her regular care team about 70% of the time. I've realised she can't be left alone more than about 1.5 hours without going into really steep decline and she can have episodes of absolute confusion and anger and paranoia about money, doors (are they locked? Where are they? Why has someone moved them?) but other times she's happy and chatty.

I've been looking after her now for 2 years and although the GP has done blood tests and adjusted her thyroxine doses, he's never given me any advice on dementia, other than to say it 'looks like' dementia but it 'might not me'. When I ask what else it could be and how we get a proper diagnosis, he is non-committal and says mum would need to attend Memory Clinic - which she won't.

My brother has POA and he's not bothered about a diagnosis, but I am because I feel now is the time we need to be having pretty serious conversations about her future care and what her outlook is. I feel we're getting near to the end of the road (or are we? Will I still be spending around 40 hours a week with her for the next 10 years? What will OH and I live on if I am?!) and still no real answers. I've recently been diagnosed with an auto-immune disease so I don't honestly know what the future holds for me and I just feel scared and helpless. I want to plan ahead.

I've made an appointment to see her GP by myself this week. Any tips on how to manage the conversation? The boss of the care agency has also been in touch to say she wants to 'review' mum's care and I'm worried now what she's going to say.

I agree that you should be talking about the future, especially since you have been diagnosed with an illness yourself. It sound like your mother is ready to go into care on a permanent basis however I would ask your doctor about any day care places that may get her out of the house. You should also enquire about respite, my sister-in-law went into respite and decided that she would stay there. Her environment was much smaller and more controlled so she felt safer.Ask your GP about your own capacity to take care of her,especally in the long term and tell your brother that he will have to become her full time carer now that you are ill, if she cannot be placed in respite or a care home. Even though you love your mother, staying at home at her stage may not be the best option for her. Best of luck and good wishes for the future.

After reading all I can get my hands on, I've come to the conclusion that mum is in Stage 6 of dementia.

She needs help dressing, going to the loo and her meals have to be easy to eat. She needs an apron on while she eats and help initially guiding her hand to the spoon.

She sleeps probably 60% of the day and can't walk more than about 5 yards (with her frame) She forgets her way around the house she's lived in for over 50 years and can't recognise her regular care team about 70% of the time. I've realised she can't be left alone more than about 1.5 hours without going into really steep decline and she can have episodes of absolute confusion and anger and paranoia about money, doors (are they locked? Where are they? Why has someone moved them?) but other times she's happy and chatty.

I've been looking after her now for 2 years and although the GP has done blood tests and adjusted her thyroxine doses, he's never given me any advice on dementia, other than to say it 'looks like' dementia but it 'might not me'. When I ask what else it could be and how we get a proper diagnosis, he is non-committal and says mum would need to attend Memory Clinic - which she won't.

My brother has POA and he's not bothered about a diagnosis, but I am because I feel now is the time we need to be having pretty serious conversations about her future care and what her outlook is. I feel we're getting near to the end of the road (or are we? Will I still be spending around 40 hours a week with her for the next 10 years? What will OH and I live on if I am?!) and still no real answers. I've recently been diagnosed with an auto-immune disease so I don't honestly know what the future holds for me and I just feel scared and helpless. I want to plan ahead.

I've made an appointment to see her GP by myself this week. Any tips on how to manage the conversation? The boss of the care agency has also been in touch to say she wants to 'review' mum's care and I'm worried now what she's going to say.

 

[Sirena]

Please don't worry about the care review. Care agencies tend to do regular reviews. They will probably want to know if you would like any changes made, and also to suggest things which may be of help. On Monday I went to a review for my mother (who is now in a care home) and the manager started by saying it was mainly to ensure I was happy with everything.

Unfortunately a diagnosis will not help you with any of the things which you (understandably) want to know. My mother was diagnosed several years ago (Alzheimers) but I have no idea of whether she will live another 10 weeks or 10 years, or exactly how or when she will deteriorate. Dementia is unpredictable and each person is different, some people will die suddenly and unexpectedly, others will linger for years. There is just no way of knowing and it is impossible to plan for. But if you can no longer cope with your mother's needs, you might want to involve your GP and SS in a move towards a care home.

I found this timeline useful in terms of what I might expect (as you're talking about stage 6, possibly you have already seen something like this). I'd say my mother is stage 6 too.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

[Pete1]

The boss of the care agency has also been in touch to say she wants to 'review' mum's care and I'm worried now what she's going to say.

Hi @Mousehill, please try not to worry about the review - this should be standard practice. However, it may be that the agency feel your Mum's needs are greater and want to discuss that with you, that though shouldn't necessarily be viewed in a negative way as they would be remiss if they didn't do that. I think your approach of having a sit down with your brother to determine the way forward sounds very sensible and very timely. Personally I do feel that if someone is living 'independently' on their own and they no longer recognise their own property you need to consider whether that type of care is the best for them. I know that I struggled for far too long trying to keep Mum in her bungalow as it was 'what she wanted' (before she was at that stage of dementia). I found when I took the heart-wrenching decision for her care needs to be met in a residential setting she was much happier (no longer fearful) and actually had a richer existence with the activities that they put on and communicating with other residents - but that is just my opinion, others I know have looked at 24 hours home care too, I considered it but it didn't provide the facilities of a care home and it seemed fairly pointless as Mum didn't like being in her bungalow anymore. I hope you get a future plan of action that works for Mum and the family. All the best.

 

[millalm]

I would suggest that you have your brother attend the care review with you so that the conversation about the decisions you need to make can begin. He needs to hear that you are no longer able to continue to provide the amount of 24/7 support it sounds like your Mum already needs . The fact that you have been able to keep her in her home at this Stage is amazing but her needs are only going to increase, so for the good of everyone concerned, please start the process as soon as you can. @Sirena's comments on getting a diagnosis are absolutely right, even with a diagnosis of dementia there is no way to predict what will happen on an hourly basis never mind months or years ahead. (My Mum is in Stage 6 +) The fact that you are having this anxiety is enough reason to consider the next step in her future care now, I can tell you it won't get any easier to make those decisions if you wait.

 

[charlie10]

Hello @Mousehill....you sound very similar to us, except you're more involved with your mum. My FiL lives on his own, with a morning carer, and my BiL visits a couple of evenings a week with shopping, to do chores etc. FiL was assessed by a Memory dr who said that he had age-related cognition problems, but not dementia. We live overseas so our impression of him is thro phonecalls and what BiL says (and also my dad who visits him twice a week).....I'm convinced that he has had dementia bubbling away beneath the surface for several years.

His conversations are often reasonably 'normal' but then he'll say something in passing that indicates to us that he is not coping, and occasionally his behaviour can be bizarre/rude/out of character. He has capacity tho, so we're unable to make changes for him, and, although it would cross the t's and dot the i's to have a 'proper' diagnosis of dementia I don't think it would make much practical difference.....we still wouldn't know whether he would ever be bad enough to be over-ruled about a CH, or whether he will eventually succumb to one of his physical conditions or if the dementia will drag out for years.....in fact, although ever since I've known him (35 yrs!) he's been prophesying his imminent demise, I think he will outlive us all.

Diagnosis or not, all we can do is play it by ear, and live day to day.....really frustrating I know.....took me a long time to accept this, cos we're hard wired to expect a diagnosis we can pick up and run with. Stay with the forum, there are so many kind and knowledgeable people here to help you thro, and try not to pre-empt it.....some of it may never happen

 

[copsham2]

Wow your description is so similar to my mother (except for the anger). I don't know how you are managing at home. The decision re a nursing home is really difficult. We cared for my mother at home, until one day I realised she did not know where she was and that we were doing it for our needs not hers.
She looked at a picture on the wall that she had made and said that a coincidence that is like the one I have got at home (She was at home). This sort of gave me permission to start the process. She now has been in a nursing home for 6-7 years and other than one big blip it has been really good.

 

[Mousehill]

Thanks everyone The really annoying thing is that the 'Care Review' is something the head of the private care agency that provide a few shifts each week has demanded. She's not social services: we pay her team because mum isn't entitled to paid care, unless she allows County to choose her careers and after a shocking experience with agency carers when Dad was dying, we just wanted to have a full choice.

We found the agency through recommendation and they are very good, apart from the fact that the boss is ex-social services and actually makes me feel under scrutiny and still tends to speak as though we are somehow 'under investigation' which really isn't helpful. On the flip-side, the care mum gets from her team is really good, so it's just another minor gripe really!

Mum can appear like the 'lovely old dear' storybook (coach holiday brochure!!!) image of an 80+ sometimes even when she's being utterly vile and uncooperative with me and seems to have no idea where she is or what day it is. She and dad were really fond of the GP and treated him as one of the family almost and being (a) a doctor and( b) a man and( c) young enough to be her son..........she still talks to him like an indulgent mother which is hilarious because he's in his 50's (come to think of it, so is my brother and until recently, she was sending me out to but '10 bars of chocolate' in case he got hungry travelling with his work')

I'm just hoping I can have a sensible conversation with him tomorrow and convince him once and for all that she is deteriorating massively and the fluctuations in capability are scary, without her sending me out of the room to make him a cup of tea and asking him not to work too hard

The annoying thing is that I told care agency boss that I had the appointment and suggested we had the meeting after, but she came back suggesting we had it before, so she could be briefed about what I intended to discuss - which I'm afraid I find a bit intrusive although I'm sure she means well. I'm also worried that is she thinks telling mum would be best - she will! Yes, I am slightly scared of her!

 

[Sirena]

I can tell you are slightly scared of her by the language you've used - 'demanded'. My mother's care agency manager (self funded) requested annual care review meetings, it's part of their terms of service. Her care manager was fantastic, every time I spoke to her I felt like I was being wrapped in a dressing gown with a hot drink - she was so knowledgable and reassuring, and nothing was too much trouble.

Hopefully even though your care manager is a bit scary she knows her way round the system (I found that invaluable), and I am sure she wants what is best for your mother - but don't be bulldozed into anything you think isn't right.

 

[Mousehill]

Thanks again all! I've been to see the GP today and he was amazing. He planned a strategy with me to take some bloods to rule out anything else and then he agreed to pop in and see mum for a 'yearly check-up' and talk to her tactfully and gently about dementia and suggest she goes for a Memory Clinic appointment. He's known her for over 20 years and they have a great relationship, so I was really happy with that outcome.

The 'care review' was definitely not like being wrapped in a warm blanket. Without going into too much detail, it's clear the agency had one agenda, which was trying to persuade me to buy in more of their time and their method for doing this left me feeling so upset and deflated. It's bad enough watching a loved-one with dementia go down and become withdrawn, angry and confused without it being suggested you are the cause and the dementia isn't actually 'all that bad'. Bear in mind, these are people who see mum an hour at a time and not even every day and as far a hosting goes - she's a pro!

 

[Sirena]

Great result with the GP. My mother liked and trusted her GP too, it really helps.

If the care agency think her dementia isn't 'that bad' why does she need more of their time? Do you think she would genuinely benefit from more carer hours, you said she does get good care from the agency - what do they propose to use the time for?

 

[Twopoodles]

We had a terrible job getting a diagnosis from the GP but then got lucky as a locum was on duty and wrote a letter to the memory clinic outlining mums negative reactions and that mum needed a home visit, and the lady from the memory clinic came out to mum. Each time mums regular GP saw her he would get the memory clinic to call and mum would promptly say no. Mum is predisposed to saying no to most things so although we now have carers a few times a week there is little they can do apart from prompting and of course she will say no. However when the memory clinic lady came round for her assessment we finally got an appointment with a consultant who made a formal diagnosis, which he passed in a folded piece of paper, to my sister and also put mum on medication. So the advantage of a diagnosis is that mum will now have regular appointments with a consultant and he can monitor her progress on the medication and yes it is a battle to get her there. A GP just doesn’t have that specialist knowledge, and quite frankly mums just didn’t care.

 

[Mousehill]

I'd love to post here exactly what went on at the care review, but it would take too long. Suffice to say, the carers, who spend no more than an hour at a time with mum (in which time she can always manage to at least be civil and can usually go into full on hosting) have concluded that mum's condition isn't too bad at all and it's me who is the problem - so I should rectify this by buying in more shifts from them.

I'm in a dilemma now because she does genuinely like the carers, even though some days she doesn't recognise them, or remember who came to see her. On the other hand, my trust in them has gone and I am disgusted that they used emotional blackmail and belittling of my efforts to try to sell me more shifts.

I know they come in and do the job and I know mum does reserve her bleakest moments for me! (but also that's not exactly an uncommon thing and to suggest it's somehow the 'fault' of the primary carer is pretty low)