Dementia - we're all failing

Hi all,

I arrived at my parents' house as usual last weekend to my mum in tears. She was upset due to her feeling low all the time, depressed (I mean that in the actual, not casual sense of the word) and frustrated with forgetting everything. Can anyone really blame her? She has been one of the millions of people unfortunate enough to get this truly despicable disease which takes away the foundations of families and pieces of the recipients soul, bit by bit, until they can function no more. She has every right to be upset and depressed about her life. Sure, she still gets out and about with her friends, my dad and me every now and then but the next day she can't remember doing it. Every day is a blur, a struggle and hard work, underpinned by a numbness of feeling and emotion. 

I didn't feel a related image was suitable, so here is a photo
from my recent trip to the beautiful Bergen, Norway

My dad is doing his best make her life as comfortable and worthwhile as possible. Is he doing everything that I would hope he would do, saying things he should in the right way all the time? No, I don't believe so, but he's had to learn and adapt to a tragedy, ultimately, and try and put emotion aside to provide that functionality that my mum can no longer initiate. 

And let's not forget the backdrop that I've explained in previous blogs - my dad is the full-time carer, I support at weekends and then there are friends in the local area who frankly have gone above and beyond the call of duty, for example by being with mum when my dad needs to go out, or to give him a break. We have no other family who can help. Our support network is far too small for it to be fair on my dad to keep this level of support up, whether he believes this is true or not.

Mum was diagnosed in May 2017 with Alzheimer's. The signs were there at least a year before this. So we're talking two or so years of quite rapid decline. And yet, since the diagnosis and despite the backdrop just outlined, the level of support received from the professionals who are supposed to be leading on my mum's case, for want of a better phrase, have not stepped up. The support we're receiving is next to non-existent. 

Is the protocol to wait until my dad spirals into oblivion or my mum gets too difficult to care for, before stepping in? Reactive rather than proactive - like society in general?

I blamed my dad for this lack of support at first. He is from the 'I am right about everything' right-wing, stubborn 1950s-born generation where no help is required to move him along in life. His pro-activity, apart from when it comes to financial planning and money, is very poor and he has refused to seek help several months after he should have on each occasion so far, in relation to supporting my mum. Its understandable, of course, to have an element of denial in this situation, an element of 'everything will end up fine.' I mean, how dare anything as horrible as dementia break his bubble of perceived perfectionism? 

Mum's diagnosis itself should have come six months earlier than it did, delayed only because my dad put all his eggs in the 'hope everything will be okay' basket.

But it transpires that the support workers we're dealing with have never come across a situation of a carer with a lack of support and a modicum of denial. Or at least, that's what you'd think. Their pro-activity, in terms of checking how things are going or what extra support is needed, has been slow and then when promises have been made, nothing happens. 

In recent weeks even my dad has realised that seeking help is a necessity for both the sake of his and my mum's happiness. The support workers, in their defence, suggested he attend a local carer's group so that he can share his experiences with other carers of dementia patients and gain peer-to-peer advice. To my surprise and delight, my dad was up for this and I urged him to call back the support worker and say yes, do it. He has tried, on several occasions, to do so and to initiate it - and has yet to have any joy. They can't be reached. Their phone always seems to be off. 

The support worker also suggested some local groups for dementia patients and carers to go to; there are a few around where they live. However, they don't help my dad to broker discussions, it was literally just 'here are some pamphlets, now go knock yourself out.' No guidance on which group may be best or how to encourage my mum to go if she is reluctant (and she will be). My dad has got to learn all this for himself, a person who - and this is the most tragic bit of all - my mum barely trusts and doesn't recognise anymore, most of the time. He is currently looking into a private group for my mum to join on a weekly basis (at a cost), but is understandably scared of brokering the discussion with my mum for fear she will reject the idea outright and then trust him even less.

And needless to say the request to get someone to come and visit mum on at least a fortnightly basis to both provide respite for my dad and monitor my mum's progress fell on deaf ears. 

And the "care plan" that was drawn up and presented to my dad was a complete waste of a tree - all it did was put down on paper the meetings they had already had with the care worker. That's jolly helpful.

I sadly conclude that we are another victim of the NHS' chaotic administration alongside there being not enough time for staff to actually do their job, i.e. provide support. Too many forms to fill in, which then get filed under 'oops, wrong file.' 

That, combined with our not unique, but perhaps unusual situation. A person with dementia who isn't living alone, who are rightly prioritised by the services, but also one who doesn't have a large family network, rendering the need for service intervention less important. We're in the 'err, don't know what to do with you' in-between bit.

And so all that happens is that no support is forthcoming and things stay the same. Except that they don't stay the same. My mum's condition worsens and my dad's tolerance to difficulty gradually and understandably erodes. On top of which, the friends that they rely on are ageing and through no fault of their own are and will become less able to support.

All of which is directly in proportion with my guilt and anxiety rising. Guilt for not doing more. Anxiety rearing its head every time I visit my mum. I am becoming gradually less able to be a useful ally during the times I am with her, as I have to increasingly make sure I look after my own wellbeing. Me with anxiety - the whole foundation on which The Anxiety Tracker is based - is not only no help to my mum, but indeed a hindrance. I can't allow that to happen.

So where to next? I can only see the charity route helping. I have signposted my dad to the Alzheimer's Society several times already, encouraging him to call them and outline in detail the issues I raise here. He has yet to do so, and my fear is, going back to the start of this blog, that he won't until way after he should have. Does tragedy have to strike before he takes action? Should I take action myself behind my dad's back? Not an option I want to take, but it may come to this very soon if the services don't step up.

I can't help but put the blame on the services for not giving us an element of coordination, structure, guidance and support. Is this the result of a failing system? I'm not qualified enough to decide, and more to the point getting angry or blaming people isn't going to help anyway, but it certainly feels like we're being neglected. 

My previous two blogs on the subject of dementia were entitled 'what I have learnt so far.' Let me answer that question in simple terms - dementia is the devil that destroys lives. End of.

Best wishes,
Al

PS - Talking of the Alzheimer's Society, me and a friend are walking 26 miles on 1 September for the charity around Stonehenge. It's small fry of course but still feels like a small contribution, at least. If you'd like to support us, you can do here. Thank you.