On being tired

Dealing with my husband and my own chronic fatigue while returning to work has been difficult. I recently completed a survey aimed at Long Covid sufferers like myself. I ended up articulating for the first time why even relatively harmonious conversations are so very tiring.

The survey asked about brain fog and how we struggle to find words to express ourselves and answer questions. I realised that living with someone with dementia, there are a whole load of extra steps in this process.

For a start questiond may sound utterly random. My husband largely forms sentences which make sense in themselves, but make little sense without context. So the first task is to try and understand where the question came from and what is wanted. For example ‘Have you seen a small black purse anywhere by any chance?’. Grumpy, tired me wants to answer ‘No’. But unless I translate this as ‘I have lost my wallet since coming in the house’ I won’t be able to help. Actually this means ‘please find it for me as I have forgotten where I put it’ (and ‘I’ll find it tomorrow before you next need it’ will just bring on repeats).

Then no matter how well I understand the question, I cannot answer off the top of my head. My duty as carer is to make my husband’s reality easy. For example, the right answer, after a search, to the previous question is not ‘It was in your dressing-gown pocket’. This won’t make him happy or stop him randomly putting it there. I have to work out in each situation what the right thing is to say for him. I admit I don’t always manage this.

Then there’s the repetition. Sometimes it’s only mildly tiring; same question, same answer. It’s irritating when I am struggling to concentrate on work, but at least I can just repeat what I said before. But sometimes it tells me there’s something wrong which won’t go away. I can’t always prevent bad things from happening, but I should try.

So, pretty much all interactions with someone with dementia are tiring because they all require thought. Why has he asked the question? What will the effect of my reply be? What happens if he can’t take my reply on board? If, like me, you find conversation tiring anyway, it makes daily life exhausting.

Of course it all becomes easier if you stop caring. Indeed I have been given advice from friends and family to ‘just get used to it, it will only get worse’. As I have said before, I am not yet ready to separate my feelings from the person I married six years ago. And he thinks of me as the same person. So we’ll just have to continue as we are for now.

On being a full-time carer

When the Carers UK charity assessed me, they said it was rare for the wives of dementia sufferers to work full-time. A US-based Facebook group I am in often features advice on home-based piece-work suitable for carers. It seems the assumption is that spouses, or at least wives, will become full-time carers. Of course many people want to have as much time with their loved one as possible, but giving up work seems the worst possible option for me.

Since my husband’s redundancy (which happened shortly after my own) I have worked hard to give us financial security. I have made deliberate career choices to increase the amount I can earn for the effort I put in so that we can afford better support and quality of life for us both. My becoming ill has been terrifying but if anything it makes the need for employment even more important.

Apart from the quite staggering impoverishment of being a full-time carer, I feel it would destroy what little of our recognisable relationship we have left. As I have said, I never wanted to be a parent, and the parent-sulky child relationship which persists between us probably upsets me more than anything except for when he is actively aggressive. I want to have some little time interacting as adults while we still can. Besides which, I’m not actually very good at it.

The last few months have actually thrown this into relief. I have been unable to work, because of post-viral fatigue (and managed, with a fight, to continue to be paid). But I was completely unable to do more than the bare minimum of caring (mostly cooking, meal and financial planning and endless admin seeking more help; the house was a tip until our cleaner could return). I had to manage the standard dementia symptoms – repetitive questions, obsession and frustration, moving things, losing things, as best I could. What I did undoubtedly slowed my recovery. My paid time off was specifically to enable me to work again, not to spend more time looking after my husband (that’s capitalism, folks).

Sadly, some members of the Facebook groups also discuss what happens when their loved ones move into residential care or die. As well as dealing with grief and guilt, they find they have no money, no career and no life infrastructure of their own. It is likely that some family and friends have disappeared during their journey. Selfish as it might sound, I have to consider myself as an individual as much as my husband’s carer.

I do not blame anyone who wants to devote themselves to caring for their loved one, especially if they know that it will give them the best possible life. And I hope they find a post-caring future. But it is not the right choice for me. Now, all I need is to find the care to support us both.

On denial

Since joining a Young Onset Dementia Facebook group I have learnt about the lives not just of other carers but also of people with Alzheimer’s themselves. Many are frightened but also brave and determined to make the best of their lives. Diagnosis has been both a shock and a starting point for them to manage their symptoms. My godmother did this as an older person. She took herself to the doctor as soon as she found she was uncharacteristically forgetting things. Post-diagnosis she worked hard to set herself up with support and a plan for the future.

My husband has not made this acknowledgement and is unlikely to. Although he bravely shared his diagnosis with many of our friends, he is still in denial about many things. Fundamentally he accepts the diagnosis, but on a day-to-day level, he feels that nothing has changed. Nothing will convince him that his memory of something could be wrong and contradiction makes him angry (a common trait, I know, but it doesn’t make it easier). He is determined that he does not need any looking after or clinical help. Any intervention of this sort upsets him, although he is always polite with third parties. He is, as I have mentioned before, suspicious of any involvement I have in financial decision-making.

I have come to believe that being a man has much to do with his inability to adjust. No part of his life up to now has prepared him to admit lacking competence. Here’s an insight: Arriving on holiday we ordered a taxi. He could not shut the sliding door and the driver didn’t bother to help him, leaving me to close it. A few days later, we were in the same cab and I made sure to get in second this time. When I fumbled with the door the same driver got out of the front seat and shut it for me. In his head: the girl will always want help with things mechanical, the man can manage. My husband has experienced this kind of assumption for 62 years.

My husband’s resistance to his condition is one of the reasons diagnosis took so long (that and the fact that he lived alone until 2012). When I first raised my worries with him in 2015, he didn’t speak to me for three days. When he had his first diagnostic assessment, he performed beautifully and was dismissed with ‘borderline, he just needs to get out a bit more’ (the MRI analysis missed it too). I believe he felt he had ‘won’ in some way. As we left the clinic, he even said ‘I told you I wasn’t ill’ (this is a Spike Milligan reference). 

I can’t possibly imagine what it must be like to be a man born in the 1950s. Throughout his life, people have treated him as though he knew what he was doing. When we moved house, he overpacked book boxes, contra my advice. The movers blamed me. Men just are treated differently. Trans men presumed to be assigned male at birth say they notice a change from when they were perceived as women. This isn’t always positive of course, but both men and women generally do accord men more respect and authority. Whether we consider it a privilege or not, for my husband to accept that his condition has left him less able in memory, insight, decision-making and executive function, he would have to relinquish a lifetime of conditioning.

Some of the post-diagnosis men posting in the Facebook group show great self-awareness and are taking steps to ensure that others can help them as they become less able. So clearly it’s #NotAllMenWithAlzheimers. Some of my husband’s attitude certainly originates with his personality. But I am certain that the expectations he has carried all of his life make his current disability much harder to accept. And this makes him much harder to help.

On challenging behaviour

When I describe upsetting and scary things that my husband does, a typical response is ‘My Dad was like that. You can’t take it personally’. While not wanting to diminish the horrible experience of watching the person who raised you both require and reject your care, it has made me think about how it feels different when it is your partner, not your older relative exhibiting challenging behaviour.

I absolutely entered into marriage ‘in sickness and in health’ and that is what has kept me going during the last few difficult years, which now outnumber the ‘normal’ ones. I understand why my husband is angry and as I am the only person here, I take the brunt of it. I am also familiar with typical dementia behaviours and know that, for example, when he angrily accuses me of stealing, it’s just part of the horrible disease

But this doesn’t make it any less hurtful. And much of it resembles gaslighting and controlling behaviour (‘No, you are wrong and I will assert this with aggression and then turn the argument’). I grew up standing up for women’s rights. I want to tell women they don’t have to stay in emotionally abusive relationships. And yet if I am committed to being a good carer, this is what I must do. I genuinely don’t know how to balance my commitment to ‘in sickness’ with the belief that women should not be oppressed in marriage. I didn’t enter marriage expecting things to be easy. But I expected to be able to argue a reasoned case. And I always expected to be appreciated for my contribution.

As I say, I would not want to diminish the awfulness of caring for a parent with dementia, but the hopes and expectations of marriage are different. You expect to negotiate marriage as a team. You set boundaries, make concessions. It is a constant give and take. With a parent, the main part of your relationship happens at the start of your life. And, not for everyone, but typically, when you care for a parent, your main relationship is a different one.

There’s nothing ideal in the upside-down situation of giving back the care you received as a child. Neglectful parents require care as much as loving ones. Female children take on a disproportionate amount of care, regardless of what they received. Nobody can choose the family they were born into, or indeed the fact of the their existence. But it is at least based in an idea that ‘you protected me in my first years, I will do the same in your last’.

The commitment you make in an adult relationship is different and in theory should be better and more equal. But Alzheimer’s doesn’t know ‘should’. It throws the whole world of negotiation, give and take and reason out of the window. When my husband is angry, no concession I make will pacify him. While I try to enter ‘his world’, at times I do have a meltdown and point out, for example, that rather than stealing, I have actually been supporting him. But I honestly don’t think it makes any difference to his response. This isn’t a right and wrong world. As Terry Pratchett wrote, it’s the other side of the coin to whatever right and wrong are.

So, can you tackle the challenging behaviours of Alzheimer’s within the commitment of the marriage contract? Or does Alzheimer’s void that contract and make a completely new relationship?

On carer therapies

I recently began the START programme, designed to support family members following dementia diagnosis. I’ve had two sessions, and it seems I already had a fair amount of relevant thinking in place, but it’s useful to have this ‘place’ to discuss what it feels like. We won’t do everything in the manual, but I am glad I’m doing it.

I had already been in weekly talking therapy (based on a psychodynamic approach) for some years. At times it’s amounted simply to acknowledging that my external circumstances were tough. However, well before current events, it helped me acknowledge and deal with “inappropriate” anger. This has been really helpful in the current context.

When my therapist first said ‘This wasn’t what you bargained for when you got together / got married’ I denied this emotion and said, quite rightly, that I would have married my husband even if I had known. After all, think how terrible it would be for him if he were still living on his own, as he had for 20 years. I refused to acknowledge that I could possibly be so selfish as to make it all about me. It did not match my self-image, or the image of the person I thought I should be. Perhaps this was worse because, as a woman, I am ingrained to aspire to being ‘good at’ caring.

However, it’s been much more helpful to acknowledge that actually I do feel anger and resentment and that’s okay. I’m not proud of ‘why me? ‘ feelings but it’s allowed me to reason with myself when things get really hard. As a carer you can cope with a lot of negativity by reminding yourself this is still the person you love, and it’s not their fault, but sooner or later it will get to you. You aren’t wrong to admit that actually it’s not your fault either. You have been doing everything you can to make your loved one’s life better and no, it’s not ‘fair’ when there is little reward and a lot of punishment.

Most therapy for carers is based around understanding, respite (essentially, building up your strength for caring again) and daily coping. Included in the latter is ‘the signal breath’ and meditation. I’ve been recommended the latter to treat a lifetime’s worth of ailments and this has often annoyed me. It’s one thing having the wisdom to accept what you cannot change, another to accept that systemic injustice is ok. And if you care for someone with dementia, you will experience the latter, not to mention deeply unrealistic expectations from other people, which you should challenge.

However, meditation, at least the course I have been doing, encourages the ‘compassion muscle group’. It was revelatory to understand that the harder I was on myself, the less sympathetic I was to my husband. Like accepting the anger I was ashamed to feel, this is a really important coping mechanism. Self-compassion often seems impossible in a caring context – and other people’s expectations won’t help you here – but without it, you will never have the resilience to cope.

Therapy can only ever go so far to help with difficult life events. Some things just are tough. But most of us acquire caring responsibilities (and the accompanying life administration) without having time to breathe, never mind consider how it affects us. If we don’t stop and think about ourselves, acknowledge our anger and forgive ourselves, we become worse carers.

On care

Until now, I hadn’t explored additional care for my husband. So much has been cancelled or unavailable during Lockdown. My having fatigue makes research and organising difficult. One phone call can knock me out for an afternoon. And this kind of organising requires a lot of calls and emails.

However, without help, I feel our relationship will be damaged irreparably. I know this is inevitable in the long term, but I would like to share as many good times as possible. Sometimes things are lovely between us, but often he is paranoid, angry, frustrated and then cold and distant. If he is anxious, nothing I do or say can allay his concerns. In fact he’s more likely to rage about how I “don’t get it”. It’s exhausting and upsetting. I need help.

So I have started to make enquiries. I am looking for companionship and stimulation for him, someone to motivate him where I can’t. There’s respite and there’s the fact that when I am well enough to work, I won’t be available. Then there are skills I don’t have and approaches not compatible with my still being emotionally committed to a personal relationship (some things would be much easier if I didn’t care). In all cases I need someone familiar with dementia and compatible with him.

I was surprised to find that my biggest barrier to finding help is neither money nor Covid 19. Most hourly Agency care is indeed expensive, but is primarily aimed at people who are physically frail and need domestic help, not companionship. Most of what you pay goes to the agency and very little to those carrying out work which is, extraordinarily, considered an unskilled job. No doubt I will be paying for this soon enough, but for now it’s not what we need.

My care contact (from the Alzheimer’s Society under contract from the local community health trust) has recommended instead the Buddy Hub, local authority volunteers and a Befriending charity, all of which I am trying. But even here, I am unsure. For example, if Buddy Hub finds a match for him, he will see them only once every three weeks, the aim being to find three matches. My subscription pays for the matching, the actual buddies are volunteers (for the other services, the charity and the Council cover the matching and administration). I would never underestimate volunteers’ commitment and energy, but there is only so much you can expect from someone who is not being paid.

At the other end of the financial spectrum are specialist services, such as music or occupational therapy, where he might have a therapy hour every fortnight. But I am struggling to find someone in the private sector able to take on a new client and we would not qualify for services provided by the local trusts. At present of course, most therapists are not offering face-to-face appointments.

When I look at other people I have known with dementia, their care and support has been managed through existing contacts and word of mouth. For example, my godmother has been close friends with her cleaner for 30 years, and she was happy to take on a care and companionship role. My late mother-in-law, when she lived independently, had a daily carer she knew already, and when in residential care, a befriender who was a relative of a friend. I don’t know how to access resources like this and none of our friends have any suggestions.

All of this is quite apart from the challenge of getting my husband to accept the care. When he started getting lost on his way to choir practice, and I arranged a lift for him, he said ‘I might as well have loser tattooed on my forehead’. He has already spoken bitterly about ‘babysitting’. I have said before that friends have been reluctant to help ‘unless he’s okay with it’. He won’t be, but it will still be necessary. I’m no closer to a solution.

On loss

Earlier this week I had a telephone consultation with a psychologist who had previously seen me alone (in person) and with my husband (on a video call). I found her questions a little basic (‘and how does that make you feel?’ type thing) but accepted we have to start somewhere. In her feedback she said ‘It doesn’t sound like you have a connection with each other’. The truth of this made me feel for the first time that my marriage has effectively ended.

It is absolutely true that conversation between us is not a generally a source of pleasure. Anyone looking after someone with memory problems knows that conversations are circular and repetitive. My husband operates on feelings rather than information, which he can’t really absorb. If he confronts me about something and feels instinctively I am not right, nothing I say will register with him. Any underlying problems we may have had (does he respect me? does he trust me?) are painfully apparent and can never be fixed now.

But it would be wrong to say that we have no connection. When he is not angry with me, we share a lot of affection, both verbal and physical. He is still capable of being very funny and is a natural clown. When he feels affectionate, I know he wants to do things to please me, even if he can’t actually do so. If we didn’t have a bond, I wouldn’t be so upset when he is cold or angry with me. And when he relents I would not feel such relief and love.

I feel heartbroken whenever I think about what he has lost of himself: the writer, the reader, the musician, the cook, the cyclist, the swimmer. However, he at least verbally maintains he still does these things. I don’t contradict him and I have admonished myself to concentrate on what he can do. Until the conversation with the psychologist, I don’t think I had taken time to reflect on our losses as a couple, or perhaps I was too determined to value what we still share to accept it.

In the long term, I can’t do anything but concentrate on what we have left, what will bring him pleasure, and what will make life bearable for us both. But I do need to acknowledge what we have lost before I move on.

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.