My mother is in her 80s, increasingly frail (can’t walk more than 150 yards without a five minute rest) and has mixed dementia as I mentioned.
The basic problem is that she is becoming increasingly demanding to manage, but always prioritises her own wants over everything else, regardless of how much inconvenience or aggravation that causes to other people. Now and again there are comments about, well, she could go into a home, but she places very high value on staying in her own home, and appears keen to avoid going into a home. She does go in to a Christian-based home for respite visits if we’re away, but insists on doing her full schedule while she’s there including taxis etc. to ferry her about; the home insists on a full listing of all this which is awkward as she keeps changing her mind or forgetting some of it. She can’t be trusted to arrange her own taxis as she gets them wrong even when reminded, and taxis have been sent away empty before now because she wasn’t ready for them. At least two taxi drivers have banned her for soiling their cabs. Various people are starting to tire of the endless burden which can include 4-5 calls the same day, including about the same thing 30 minutes apart, and even the church have apparently said they could do with getting fewer calls. If she doesn’t get what she wants straight away from person A, she will them bombard everyone else she comes into contact with about the same thing (B, C, D etc.) and has been known for example to ask agency carers to repair curtains.
I suspect she is absolutely not going into a home unless or until she believes it is in her interests to do it. Other people won’t be a factor. As she still has capacity and is often very obstinate when it comes to insisting on what she wants I don’t see how she could be forced into a home. Even if she did go in, I can’t see her agreeing to drop her external schedule. Other half and I really want to spend periods of time just forgetting mother even exists, but she seems to be looming very large and we seem to spend large amounts of time dealing with her issues. For example just the other day she gave me an 11 page care plan from the home which will need commenting on and amending.
It’s been suggested that she might have a mental illness as well as dementia. Looking at some of the known options (see https://www.mentalhealth.org.uk/sites/default/files/Dementia%20paper.pdf)
- depression: no. She’s a natural optimist.
- anxiety. By which I assume they mean generalised anxiety disorder. Yes, she does get some of the symptoms and is periodically anxious, but not usually for example insomnia. (See https://www.nhs.uk/conditions/generalised-anxiety-disorder/symptoms/.) The home she has periodically stayed in believe she has been diagnosed with hyperthyroidism, but I’m not sure if they’re right. Both conditions look plausible, and I intend asking her GP about them next time she goes in for a memory test. Now I think of it, I think her GP did give her something to try for anxiety a long time ago, but I don’t know what it was.
- bipolar disorder: doesn’t sound like her.
- schizophrenia: apart from being confused, this doesn’t sound like her.
- psychosis: again, doesn’t sound like her.
- How plausible is it do you think that continually panicking about things and not considering other peoples’ interests sufficiently could be due to Generalised Anxiety Disorder, Hyperthyroidism or some other illness apart from the dementia?
- Is it really true that I and Other Half would be entitled to a carer’s needs assessment, and if so is there any point asking for one? Given that she already has private carers, aren’t they just going to say, well you don’t have to get her up or put her to bed, you don’t have to go round there every day, you don’t have to taxi her around, where’s the problem?
- What is a health and social care co-ordinator supposed to do exactly? Ours did nothing, and covers four surgeries so is bound to be very busy. They wouldn’t get involved in day to day oversight would they? The health service or any related people are only going to get involved to put care packages in place initially or if something specific happens, not on an ongoing basis, correct?
- Someone did suggest we should be outsourcing day to day management of mother’s care arrangements to others, but that’s not feasible is it? Whoever is involved, we’ll always have to be in touch with them, dealing with any issues they raise, asking them about progress etc., correct?
Yes, you can have a Carers Assessment.
Does mum have an official dementia diagnosis?
Do you have Power of Attorney?
Is mum receiving Attendance Allowance?
She should be entitled to council tax exemption due to severe mental impairment. This can be backdated due to severe mental impairment.
Is the gp aware of the incontinence?
?Continence Nurse involved?
- Yes, she has an official diagnosis (from Highlands House)
- Yes, I have power of attorney, both financial and health, but at the moment she still has capacity which means it’s inactive. I’d have to get a doctor to sign off that she had lost it and then register this before I could use the power of attorney. It appears that the GP is unlikely to do this until mother no longer remembers who the prime minister is etc. That seems to be his test, though he does acknowledge it’s only what he calls a “basic memory test”. Significant Other is very familiar with capacity, so we will know when she’s lost it.
- Yes, she’s receiving attendance allowance, and getting all her council tax written off, though fortunately money is the least of her worries.
- A continence nurse has been involved, and she’s now getting periodic deliveries of pads apparently paid for by the NHS. However like all the NHS people who’ve been involved, there’s no ongoing involvement - they expect to be called in if something happens (such as mother falling out of bed twice) in which case they do whatever they decide to do and then exit stage left. There’s no regular visit from a community nurse or anything.
I did a quick web search on carer’s needs assessments and one version of the story is that they’re better avoided. Allegedly they ask a lot of nosy, intrusive questions and then either offer nothing or things that are of little value or worse than useless. We can book our own trips away, and mother can go into respite care in the home. However, there are logistics involved with the respite care that can be time-consuming. Only last night Significant Other and I spent hours going through calendar dates for the forthcoming year. If money isn’t the real issue and mother already has various private people going in and out, realistically is there anything a carer’s needs assessment would actually do that would be beneficial? or would they, as the health and social care coordinator did, congratulate us on how well we’d done setting everything up and then exit stage left?
Regarding the home, is there a point when realistically someone with failing health should go into a home, and how can you tell when that point has been reached? In mother’s case
- She has been into hospital and has had ambulances called to her house, though not continually and not very recently
- She has fallen over and been unable to get up, and been unable to get out of bed, more than once but again not continually and not very recently. She’s around 16 stone so far too heavy for us to lift.
- She has significant mobility problems - she can’t walk more than 150 yards without resting
- She loses focus at times when you speak to her, and it can be hard work getting information out of her
- She prioritises her own wants over everything else, and can bombard anyone and everyone with them, whether or not that person is an appropriate one to ask. She can also call the same person repeatedly the same day about the same thing.
- We’re getting to the stage where we’re tired of endlessly talking about mother’s needs, mother’s wants, mother’s arrangements, etc, at times to a far greater extend than we do anything we might want for ourselves. We also don’t like effectively being on call 24/7 in case something should happen which can be draining even if nothing does, and can be a worry for anything we might try and do. For instance Significant Other has a theatre trip booked for June, for a show she’s wanted to see for years, but if that morning mother rang and had fallen over or something, even though the non-refundable tickets have been booked and cost a lot of money the trip would have to be abandoned and we’d have to go and deal with her, that’s just how it is.
- We did ask the one other relative, my sister who lives three hours drive away, what she could do to assist, but the response seems to have been that she can’t come down until at least July and maybe not even then. We gather from Facebook that what she is actually doing on some of her unavailable dates is going to music festivals or religious events. She apparently feels that as she has a “bone-wearing job” she needs to prioritise her downtime. She also has a mother-in-law nearby with health issues, and has emphasised how extremely stressful merely having children is, even if they are not living at home and aren’t in any trouble. Which means sister’s priorities appear to be (1) job (2) children (3) own downtime (4) mother in law (5) her own mother. Significant Other thinks sister is doing what is known in the trade as “disguised compliance” - that is making token offers to help that are never going to happen. They’re like desert mirages - they recede as you try to go towards them. You never actually reach that pool of cool water.
- Others mother is coming into contact with are tiring of her. Her church reportedly feel that they are getting too many calls, and when it comes to it nobody actually wants to go round and see her. The latest requirement she’s announced is that she requires weekly visits, every Friday, to have someone to talk to, that’s in addition to the paid PA for two hours every Tuesday, but our understanding is nobody will want to do it. They’ll be polite if she turns up somewhere such as church or art, but they aren’t going to go out of their way to be with her. Mother can appear not to be entirely aware of the difference between people paid to attend and personal friends.
My worry about this is that as it stands now it would be out of character for mother to go into a home primarily or substantially to relieve the load on us. If she believed it was in her own interests, she might then, but she isn’t likely to do it for other people. Significant Other really doesn’t want to do it much longer and thinks mother ought to go in to the care home permanently sooner rather than later; and also that my ASD means I can only be of limited assistance. Sure I can argue that if something happens mother will be better off in the care home which will have a 24/7 presence, but mother prioritises her social schedule over everything else, even though that schedule involves travelling around in taxis and is increasingly problematic given her condition. At the request of Significant Other I am on Tuesday going to tell mother that dealing with her is damaging my relationship with Significant Other and that mother ought to be thinking of going into the home full time… but what if she says no?
Give up any idea of agreement from mother, or help from relatives.
You have a RIGHT not to care, and need to prioritise yourselves. If you have something planned. Make it clear that some things, like my holidays, are non negotiable!
If she has a pendant alarm and she calls, instruct the call centre NOT to ring you. They must ring an ambulance and or Social Services for their Emergency Carers.
Mother has agreed to go on a care home active list, which means subject to seeing the room she is going in when a place becomes available. Unless that is she backs out when it comes to the crunch. My sister was helpful in persuading her to do this, as was my Other Half.
Leaving the pendant people to call the ambulance apparently isn’t an option, because they will expect that a friend/relative etc must be there when the ambulance arrives. Further I’ve had bitter experience of trying to get ambulances, and even for a doctor using phrases like “flashing blue light” it is almost impossible unless the person is actually in the act of dying at the time. You get some intermediary whose job it is to persuade you to accept as little help as possible, and preferably none at all. Mother doesn’t have any social service involvement, no regular social worker or anything. None of her neighbours or her church want anything to do with it. I’m afraid it is just us for the button, we’re it. There is nobody else.
Further question. I’m being told that I should be getting in touch with ‘my local carer network’ and that I should be getting a ‘carer’s card’. Does anyone know anything at all about this? I’m being told things like ‘my local carer network has been wonderful’ … would this just be a purely local arrangement where that person is, not something that exists elsewhere or in any national sense, is that right?
Well, excellent news that she has agreed to a care home. Even the fact that she is considering it is positive. Maybe she could be persuaded to go there “for a rest” or because the doctor said she needs convalescence. I used both reasons myself. As for the viewing of the room, be ready to stress how much nicer it will be once the personal things are in there, photos, ornaments whatever.
As for your local carer network, I found it to be a postcode lottery. Different areas have different options available. My own area had very little when I needed it. I did find some support from Age UK, whereas my local branch of Alzheimers (there to deal with all types of dementia) was next to useless. Others have found the reverse. Your local GP surgery may be able to pinpoint what is available in your area and also your local Social Services should be able to tell you, or reference it online. Some areas may have a Carers Card but mine own didn’t. It is worth registering with your GP that you are a carer.
Fingers crossed for you. I know what it is like to care for someone single-handed with no support, I did it for many years myself. When my mum went into a home, the most dificult decision in the world, I still cared but someone else did the day-to-day work which is so wearying.
One of the problems with the care system is that every area is different, what works in one area doesn’t in another.
Are you in England, or Scotland? There are differences between what is available between one and another.
In England the Care Act applies, as a rule, only now the rule book has been torn up and nothing that worked before works at the moment.
As the mum of someone with learning difficulties, I’m dismayed at the collapse of everything that is normal. These are very worrying times for all of us.