On help

“Tell me what we can do to help!” was the most exhausting, but not least characteristic, of responses to my husband’s pre-diagnosis behaviour. I was overwhelmed myself but had no idea what was supposed to happen next. I genuinely appreciated the intention, but felt a failure for not having a good answer. Worse, I felt I was letting both my husband and friends down by potentially wasting an opportunity to make things better.

Dementia (not uniquely) produces situations which go against accepted narratives. For example, most of what I have learned about relationships isn’t relevant in a situation where your loved one believes things which are not true, develops obsessive ideas and can’t learn from experience. A lot of well-meaning “have you tried?” don’t match the situation on the ground. This makes it very hard to articulate what would be helpful.

There’s also a certain amount of ‘Can I help? No not like that’. I once made an widespread appeal for help that mostly received no response, I think because it made the recipients uncomfortable and would have demanded they do things with my husband they hadn’t done before. The one person who did reply asked ‘will he be okay with that?’. To which the answer was not necessarily, but sometimes you have to do difficult things if you want to help (they did, and did).

Professional support is a different matter. I have been given lots of information about dementia community activities. Most of these aren’t running now because of the pandemic. But even when they resume, I don’t know how I can persuade my husband to sign up or whether I can force him to go, assuming I am over my fatigue (at which point I expect be working full-time again). Will I have failed by not taking up the offer?

I have also been disappointed by how much of his treatment is essentially conversations with me. I somehow thought that specialists had skills enabling them to communicate with people with cognitive problems. I didn’t realise that most of my husband’s care would be dependent on my being able to articulate his needs, in as far as I can. And I had no idea how many interactions would begin “what do you want to get out of this?” and end “what do you want to happen next?”.

Over time, a number of friends have stepped forward with practical help, giving me respite and providing my husband with stimulation I can’t offer. I am hugely grateful to them and the fact it isn’t possible now is bad for us both. I can also say what has been most helpful from my own friends. The phrases ‘No, don’t do that, it’s not good for you’, ‘stop feeling guilty it’s not your fault’ and (my favourite) ‘you’re his partner, not his Mum, that is not your job’ were amazing at the time, and to reflect on. Knowing this help is out there when it’s over is going to get me through these dark times. And maybe I will have found the words to ask for more.

On occupation

My husband’s memory problems became noticeably worse after he was made redundant three years ago. I am also certain he was suffering from depression. For a while I helped him apply for jobs. I had serious doubts. He couldn’t follow online forms or focus on application questions and the modern workplace is deeply unforgiving. However, it was irrelevant, as not even the most likely application resulted in an interview.

In normal times he does volunteer reading with infant school children, something he found himself. The school know about his condition and are happy for him to continue. He doesn’t always go on the right day but enjoys it which is a great relief.

In the last eight months his ability to carry out tasks in the house has seriously deteriorated. I can’t believe now that it wasn’t long ago that he could make me a pasta dinner. This year even he changed our bedding. The lack has become particularly noticeable because I have post-viral fatigue and am able to do very little and obviously no-one else can come in and help.

His reactions are mixed. Sometimes he’s angry. Sometimes he’s sad and feels useless. Sometimes he’s convinced that he has actually done a task that he hasn’t (hoovering, say). A lot of things he simply doesn’t see. I still leave washing up for him but will do a few loads myself a week to scoop up the stuff he misses (or ignores – he was always a bit of a picker and chooser).

Those of you with older loved ones or those with far worse dementia may find it strange that I hope for any contribution from him. But he’s extremely fit and still capable of all kinds of things. In a situation where I have to measure out my energy expenditure, I want to find things for him to do, for both of our sakes. But I am aware that this will be an ever-decreasing list.

On humouring and correcting

When I was a child in the 1980s and we visited my Granny in the psychogeriatric ward of a large city hospital, she started drinking an imaginary cup of tea. I must have asked her if it was nice or something because my mother said ‘No, you mustn’t humour her’. I think that medical opinion varies now but it seems to me that for elderly people with severe dementia, accepting their world is the most compassionate approach.

It’s a bit different with early-onset dementia. For a start, my husband can take new information in. When he acts contrarily to a suggestion from me, it could be that he has forgotten what I said, or it could just be that he disagreed. Secondly as an able-bodied person of 62, there is a lot more that he can do that could endanger himself or others, especially during a global pandemic. So I want to at least try and state the facts. And when things don’t turn out as expected he often says ‘well I didn’t know’, so I feel I should keep him informed.

But I have to be honest with myself and admit that I have a problem with letting things go when I know them not to be true. In Molly Hughes’ memoirs she describes a colleague who couldn’t just say ‘oh yes’ if you remarked on the weather, if she hadn’t genuinely noticed it. I am like that. I have mostly worked in fields where ascertaining and communicating authoritative information are central. I react physically when I hear blatant untruths or even sloppy generalisations. I can’t actually read or listen to most news journalism because of this.

More shamefully, I know I feel embarrassed when my husband says something that is not the case to another person. And if he does something ‘wrong’ like visit multiple shops under the lockdown, or fail to shower for three weeks, I think it will reflect on me. Actually most people know his condition and does it really matter? (to add some perspective, he is most likely to have been exposed to and become immune to Covid 19). And it’s not like I have any means of stopping him doing whatever he decides to do.

I currently have post-viral fatigue. This means I have less energy to argue. Sometimes I feel so detached from the world I genuinely don’t care. But usually I find it just as tiring not to challenge untrue statements as to do so. Perhaps this will be an opportunity to learn to ‘let it go’. I will have to eventually.

On Lockdown

The world’s current experience is so unusual, it is hard to write about the aspects specific to early-onset Alzheimer’s. I am also painfully aware of the crisis in pitifully unsupported care homes, where low-paid workers and vulnerable residents, the majority with dementia, are both at risk. We are very lucky for many reasons.

My husband is generally aware of the Covid 19 outbreak, although I have to keep reminding him that he can’t go out, go to the GP, and should only go to the shop once a week. The bigger challenge is that I appear to have the virus and have been laid low with fatigue. Sometimes he remembers I am ill, sometimes he doesn’t.

I have far less physical and mental energy. Physically, this means the mess he regularly produces – emptying drawers and cupboards, for example – does not get tidied. Mentally I really struggle to stay calm and accepting of typical behaviour. Not being able to go out no doubt exacerbates his underlying (and understandable) anger at his situation. Last week he was furious with me because I couldn’t engage with a document that was bothering him. Those who have experienced it will know the tenacity of someone with dementia obsessed by a detail. At a time when I am more easily emotionally bruised, his rage was exhausting.

I think all couples on lockdown are feeling the pressure of only seeing each other. Many people on their own wish they were not and people with children too are exhausted. I have the advantage of facility with technology. When I am up to it, I can join online conversations with others. I include him too if he wants but, on his own, he can take 15 minutes to send a simple text. Some friends have phoned him, but he could really do with more human interaction which is not me, and especially not me exhausted and ill.

However, it’s not for ever. Reflection isn’t really possible when you don’t store memories but I wonder if he will appreciate the freedom he does have when he gets it back. I know I will.

On holidays

… which is where I am now. At one point last year I thought we might not go on any more, but happily for both of us, here we are.

Holidays aren’t advised for people with dementia, because they can be confusing. In fact some writers imply carers are indulging themselves if they take their loved one on holiday. I certainly had moments last year when my husband was angry and upset because he simply didn’t understand where we were. He knew the city and why we were there, but could not get used to the apartment we were in.

My husband introduced me to skiing holidays, as he’s been going since childhood. Although I don’t ski myself, we both enjoy the holiday. Over the years his ability, and my confidence in leaving him on his own, has declined. Last year I contacted a specialist agency (who mostly facilitate skiing holidays for people with mobility issues). I later told them I thought it would be impossible, but they persuaded me to carry on.

I’m very glad I did. He’s had two sessions with an instructor which he really enjoyed. This also gave me two hours each day to go for a hike knowing he wasn’t going to go awol. We both love the hotel and the food and drink is great.

The only thing I will say is that it’s expensive. After the first hour or so, he probably didn’t need an instructor, so much as a companion, to make sure he’s safe and doesn’t get lost. But all that’s available is the rightly considerable hourly fee of an expert instructor. The rest of the time I need to be with him and I can’t do that on the slopes.

I won’t pretend he doesn’t still get disoriented. It doesn’t help that we’re in a bilingual area so he’s not really sure what country we’re in. And we were upgraded to a room so large he became convinced we were the only guests in the hotel. The other thing about travelling is that you can’t avoid potential conflict situations. ‘Darling we need to get the luggage down now’ turns into me climbing on the seat and carrying three rucksacks onto the platform while he becomes outraged because I rushed him.

But I’m still glad we came on holiday and hope there will be more to come.

On modern life being rubbish

We all know how hard it is to get things done these days. We can’t speak to a person or if we can, they are far away and forced to work from a script. Things are automated and go wrong. I run a service myself which is far from perfect partly because we cannot do the job we are meant to with the resources available. So I sympathise.

But the modern way of accessing services is particularly hard if you care for someone with dementia. There are many forms to fill in and phone calls to make and life is pretty tiring already. Then, the communication is as likely to come to your loved one as you, which can be baffling and often worrying for them (please enough with automatically churned out statements, financial institutions, it just makes him stressed and I struggle to keep on top of the clutter as it is).

Here are some recent examples:

– I went through the telephone triage process to request a PIP form and it never arrived. My husband was texted a reference number but by the time I got my act together to call DWP he had deleted it. Luckily a kind friend went through the process from scratch for us.

– In 2018, Vodafone sold him a second contract rather than a new phone after he lost one (he lost the new phone too). For the last 18 months he’s been paying an extra £47 a month for a number he doesn’t use. They only didn’t charge us for cancelling it because someone else is using it. Then they said they would blacklist it but …

… instead they blacklisted the one he does use. Only a trip to the shop and another three days sorted it out.

– Trying to clear the debts I discovered when I had a look at his finances, I found NatWest would not accept the payment to clear his credit card. Eventually we had to go to both banks (NatWest and the one the money came out of) in person. Luckily there are local branches, although one is closing soon.

– we have been sent cancellations for two hospital appointments we knew nothing about. My only contact point is the consultant’s secretary who said she would ask the clinician to contact us, but it hasn’t happened yet.

– LPOA has been a saga of its own for lots of reasons but the latest event is that they have sent the forms back because, despite giving me an extension so I could meet the other attorney, I didn’t return it in the original 15 days. They gave me the extension and then they failed me for using it.

– I have no idea what happened to the London taxicard application.

I work full time and often spend my weekends being a bit too under the weather to do much. Spending time on life admin turns out to be betting personal energy on an outcome that is just as likely to fail as succeed.

However … Maybe 15 years ago the process would have been easier. But then there was no donepezil and far less known about dementia in general. And life is infinitely more rubbish for many people, especially full-time carers who are completely dependent on benefits. But it’s a shame it has to be like this.

On ‘Contented Dementia’ by Oliver James

I started reading this after a recommendation from a friend after I ‘went public’ with this blog. It’s exactly the approach I want to take with my husband, that is, how can I ensure the best standard of living for him? However, I have a few problems with it

First it is culturally in dramatically Daily Telegraph world. I’m a white middle-class cis het woman and I find the examples almost exotically middle-England. Maybe there’s another book with a more inclusive set of stories. In the meantime we’re left with men, on both sides of the ‘client’/ ‘carer’ divide who come across as self-entitled gits.

Secondly, it is aimed at older people’s experience of dementia. The principal advice in the book is: don’t upset your loved one with new information, find a theme from their active memory for them to cotton on to, with a supplementary ‘health theme’ to explain why they shouldn’t do certain things. We’re advised to start as early as possible but my husband is still capable of absorbing some new information and creating new memories. And he still has some independence. I’m not in a position to protect him from new information, even where he can’t deal with it.

Thirdly, many of the successful examples are women of an age and background where they were not primary wage earners. The book discusses dealing with the fear experienced by people disabled by dementia. But a man (who has grown up fundamentally knowing that he is In Charge must be Right) angrily insisting something is the case when it’s not is hard to deal with even when you know where it comes from. The advice is to avoid the person reaching the point that they become angry, but taking over every life decision for an active person doesn’t happen in a day. And frankly my husband doesn’t believe me most of the time when I say ‘x is all sorted out’.

The book is also very dismissive of the effort needed to support your loved one’s view of reality. I stepped aside from many futile arguments long before diagnosis, but it takes a lot of effort to nod along when your loved one says things (especially to other people) that are not the case. I understand the need not to insist on the truth when it supports his happiness, but it’s just as exhausting.

I think it’s clear this book isn’t for my specific circumstances. At one point they advise the Carer to acquire a ‘New Project’ to give themselves something else to focus on and the picture is very much of a single person doing all the caring. Of course I don’t know what is going to happen in the future but I very much hope I will be one among several helping my husband live the best life he can. And I expect to be working full time for many years to come.

However, there was useful stuff here. ‘Feelings are more important than facts’ needs to be embroidered on my pillow. I am reminded I need to listen more and do my best not to correct or disagree. And getting other people to think like this is also a task for the future. This was my first proper bit of reading post-diagnosis. There will be better books but learning more is always good.