Mike shares his story as carer for his late husband Tom who had dementia. From spotting those first signs to a diagnosis of dementia, and the journey thereafter. Mike also highlights some key legal matters to get in place, at a time when your mind can be understandably distracted.
There’s no obvious beginning for someone who is developing dementia but there are many personal stories charting the moment when the disease shows itself. At that moment the conclusion is unavoidable. From this point on, initially, you’ll find yourself in the midst of confusion and anxiety. We know that nothing gets solved on its own or without time and reflective thought. Neither of which comes easily when confronted with a dementia diagnosis. My partner, Tom, was diagnosed first in 2016, followed by a revised diagnosis of Progressive Supranuclear Palsy (SPD) in 2019. He had retired on medical grounds in 2011, a full five years before the first diagnosis, and I had already retired early from work in 2014 because it was clear that Tom was struggling at home without me.
A snapshot of not an uncommon journey of uncertainty and coping
We had much confusion, anxiety, and uncertainty around coping. The clock was ticking on the progress of the dementia whilst we managed the medical appointments, taking on all the household management, working out what to tell friends and relatives, and worrying about how our future could change so much from how we planned. Eventually, the diagnosis was given.
"The shock is profound even though you’ve been expecting it. It will explain the 23 bottles of hand wash under the sink, the missing teaspoons (accompanying empty yogurt pots in the bin), the post-it notes everywhere, his inability to find where we parked the car."
The final straw for me was going out for a meal and after going to the loo, came back to find he had only ordered his own food and drink. After the diagnosis, we were referred to the local Alzheimer's Society representative.
"A good first step but at this early stage you don’t even know what you need to know, let alone know what questions to ask."
Between the diagnosis and this, there is nothing but the internet to search for knowledge and help.
"The last thing on your mind is planning and managing finances or securing legal security."
Indeed in the early stages, there was a never-ending string of medical appointments to soak up the time. We had 36 medical appointments in the first year following diagnosis.
And it’s not just the days written off. It’s coping with the outcome of difficult news as well as acting as the go-between among all the practitioners involved (the GP, the Neurologist, hospital consultants and staff, therapists, and later, district nurses and the hospice as well as trying to explain dementia to opticians and dentists too).
On top of this, you’re likely to be taking on more household management - looking at future finances to decide whether you want to continue working or retire as I did. In addition, you may be thinking about the suitability of your current home for longer-term care too. So not only did we have confusion, anxiety, and uncertainty around coping, we had big decisions to make. Maybe managing the entire domestic setting for the first time on our own all this whilst we taking on more personal care for the person we love. Whilst this stream of tasks and requirements continued pretty well out of our control, we heroically tried to meet all of these demands even though we were frightened, tired, lacking support, and trying hard to make things feel normal for the person we love.
The legal blindspot
All this created a bit of a blindspot because there’s so much to do today and tomorrow but what about in a year's time or two years' time?
What about your Wills, have you made them? Do they need to be changed? Do you maybe need to set up a trust in your will so that if anything happens to you, other people will be able to step in and administer the support for your loved one?
Just as importantly, it’s important to consider lasting power of attorney at this stage. The simple reason being that there is no knowing when a person living with dementia may lose capacity suddenly, become unable to use their bank accounts, get access to building society funds, or just simply manage bills.
Similarly, they may have difficulty understanding their medical condition, be unable to give authorisation for medical procedures, or manage their own health needs.
The two types of lasting powers of attorney; finance and property, and health and welfare, will give you the full and ongoing authority to act on behalf of your loved one and also in their absolute best interests.
Sadly for me, although we got lasting powers of attorney, we overlooked my partner's will. And by the time I had the time to sit down and think about the inadequacies in his existing will, it was too late. As by this time, my wonderful husband had lost his ability to sign his name or give sufficient, credible responses to questions to define his mental capacity, as being acceptable for the purposes of rewriting His Will. I used to spend time practicing with Tom to keep his signature going, but sadly this went quite quickly after his diagnosis. Needless to say, finance companies were sending new bank cards through the post when the old ones had expired. And I was unable to get him to sign them and use them.
We continued to go shopping and where possible I encouraged him to scan his card so there was no record necessary. Ultimately, I had to write to each of his account managers and tell them what happened, as well as provide them with copies of the lasting powers of attorney. Needless to say, this is all more work but it enabled me to maintain my husband's accounts and for me to gain control over them and in my own time decide whether or not to keep them going or close them down.
"Without power-of-attorney, this process would’ve been impossibly difficult."
Don't miss out on your State Pension by getting Carer's Credits
Another thing I found out more than a year after retiring early (59 years) from work, was that my state pension was going to be reduced because I was no longer paying national insurance contributions. I discovered too late, that the state has a benefit called Carer's Credit where if you meet the criteria, the government will pay this for you. Another sphere of seemingly endless effort required is in determining whether or not you or your partner may qualify for state aid. I recall trying to get a blue badge in my local council in London and having to complete a form, pay a fee and demonstrate how able my partner was to walk.
After doing all of this and parting with £10, the blue badge was declined. It’s insufferable that as a carer taking on a role, which could so easily be a cost to the state that you can be denied some of the most basic needs in order to perform your role. I think it’s this that leads so many carers to become activists.
(nb. Blue Badge is now issued for mental incapacity [not just physical disabilities] - you can use our free and simple Blue Badge checker to check if you're eligible). Sadly, although support for people with dementia and their carers is improving there is still a long way to go. Most of what you do is through self-motivation, self-learning and sheer determination.
There are many other legal nuances around people with dementia/disabilities. For example, foreign travel insurance. It’s important also to mention that there is a lot of important talk around rights and that these must not change when somebody has a dementia diagnosis.
For example, the Equality Act 2010 gives people the right not to be discriminated against. This could be a situation in a workplace where reasonable adjustments must be made for people to enable them to continue working rather than showing them the door.
The British Institute of Human Rights (BIHR) has practical guides on rights including those aimed at dementia practitioners, ‘Dementia and Human Rights’. It’s important to be aware of your rights: hard work to follow this through but sadly there is evidence that there is still stigma associated with disability, age or other minority characteristics and it’s important to ensure that you are not hindered in achieving the best ongoing health, welfare and support for your loved one and that you have scope to complain if you are. So there we were a few years into caring for my husband. It started in 2008. It took eight years before we got a formal dementia diagnosis. Getting a diagnosis, as hard as that is, does open doors and ensure that you get access to much of the support that you need.
"This is also the moment that you take on the label of ‘Carer’. This attribution too is very important because as a Carer, you too need support not just the person you are caring for."
Becoming a carer means you can access local care centres, carers groups, forums and support from your GP. This does not mean that you’re not still the close loving partner that you’ve always been, just an additional hat to wear.
We're very thankful to Mike for sharing his story, and for the hindsight knowledge he has shared, when he talks about the 'Legal Blindspot'.
Update: In response to Tom's illness, Mike has started another company called the LGBTQ+ Dementia, Advisory Group. This has gone from strength to strength and helps to support and raise awareness of extra issues that are pertinent to people in same-sex relationships when dementia enters their lives.