A former banker and strategy consultant, Michael Maslinski spent nine years living in a care home to look after his wife Maggie, after she developed dementia in her fifties. Michael’s book 'What would Maggie Do?' is his full account of this time. Here, he shares insights from his unique experience to help others with family members who need care.
Nearly two years ago I lost my darling wife Maggie to dementia after 15 years coping with the disease and its consequences. In a sense I was more fortunate than most. Maggie still recognised me to the end and she was still very affectionate. Although she had not been able to speak coherently for 10 years and had long since lost her ability to do the most basic things for herself, she still retained her very distinctive and charismatic personality.
In many respects I am no different from millions of others who have had to cope with the emotional distress and practical challenges of looking after a spouse with dementia, but in one respect I am apparently most unusual. For the last nine years of her life, I lived with Maggie in a care home, whilst continuing to work part time. Very senior people in the care sector have told me this rare experience has given me an almost unique perspective of the care system. I have been urged to share the lessons of that experience for the benefit of others.
Life in the care home was remarkably agreeable and in the main Maggie received excellent care from highly dedicated carers and other wonderful staff. At its best our care home was like a big family and I still recommend it strongly to friends. But I was not just a companion for my wife. I supervised every aspect of her care and made all key decisions on her behalf, as was my duty under power of attorney. As Maggie’s advocate I sometimes found myself in disagreement with a variety of health professionals across the care system, from nurses and physiotherapists to consultant surgeons.
It really is important to be alert to any changes in behaviour – as the earlier dementia is diagnosed the better.
I came to realise that, on occasion, their professional judgments are excessively influenced by an understandable need to protect themselves against regulatory sanction or the risk of litigation. There is fear of making decisions or professional judgements which do not ‘tick all the boxes.’ Adherence to process sometimes seems to squeeze out judgement and common sense. Ensuring Maggie’s best interests prevailed was a long struggle, despite the fact that I was exceptionally well prepared and well equipped for it. Others are less well equipped and it is for them I am now advocating significant changes in the culture and regulatory regime. For these reasons also, it is important for everyone affected to prepare as early as possible for what lies ahead, so that their nominated advocate is fully empowered to make decisions on their behalf.
Maggie had a huge, larger than life personality, a razor-sharp mind and quite exceptional self-confidence. She was a highly successful professional with a global reputation and, fortunately for me, she gave me clear guidance on which I could base my decisions.
Early symptoms and diagnosis
Only when she began to lose vocabulary in her late 50s did I realise something was seriously wrong. She was diagnosed with semantic dementia and later Alzheimer’s. But with hindsight, the early signs had been there several years earlier. It wouldn’t have made much difference if I had acted sooner, but now new medicines are becoming available and it really is important to be alert to any changes in behaviour – as the earlier it is diagnosed the better.
Preparation for the future – powers of attorney
Health and Welfare
Most obviously, it is very important to execute powers of attorney (‘Health and Welfare’ and ‘Property and Financial Affairs’) as soon as possible, while the person concerned is still able to articulate their wishes and make decisions for themselves. I later came to realise the importance of thinking through and recording your wishes in some detail.
The problem I encountered was that too many health professionals did not really understand they had a duty to give the same weight to my views as her advocate, that they would have given to Maggie’s own views, had she been able to speak for herself. When making decisions for a loved one, it really helps if you feel confident you know what they would have decided themselves. Issues to discuss could include: What sort of life do you want to lead? What priority is attached to remaining active and mobile and what is your desired approach to making medical decisions where risks have to be balanced against benefits? Such discussions can be difficult to initiate, but once the ice is broken, they can be enlightening and very fruitful.
Property and Financial Affairs
The power of attorney does not become activated until doctors have certified a loss of capacity, confirmed by the Court of Protection. However the person concerned may be finding it increasingly difficult to make decisions well before they are deemed to have lost capacity. Our finances had been completely separate, but straight after diagnosis we moved to joint decision-making and I became a signatory on Maggie’s bank accounts and investment portfolios. As it happens, I was able to recover a substantial compensation in respect of an investment which she would never have purchased but for her declining powers.
Discussions can be difficult to initiate, but once the ice is broken they can be enlightening and very fruitful.
It is also desirable to conduct a full review of finances and make plans to provide for the future, which may include the considerable expense of care home fees (in our case we purchased a very good value annuity which covered at least half our care fees).
Help from friends and carers
You do not need to be alone. Some friends may find it embarrassing and hold back, but others will offer to help. My experience is to accept offers of help and get people involved – some of them will become massively supportive and once they are ‘involved’ they will feel part of the team and want to be as useful as they can in meeting challenges as they arise.
At some point you may need paid carers and most people will find them through one of the big agencies. To this end I found it very helpful to make friends with the manager of the agency, and, crucially, I managed to get regular carers who shared Maggie’s love of music and the arts, which really helped in building a relationship.
Moving to a care home
There are many advantages in moving to a care home, not only to benefit from their expertise, but giving immediate access to carers, nurses, doctors and other professionals, to a range of facilities and a ready-made social life – many of our fellow residents and indeed carers were delightful company.
It is so important to have detailed discussions about care when drawing up powers of attorney.
However, in moving a spouse to a care home it is vital to stay in full control of the care they receive and of the decisions made regarding health and welfare. In particular, it is essential to be present at meetings with doctors and other health professionals. I mention this because my experience is that on occasion, professionals tend to take over and make key decisions without the input of the advocate, according to their own criteria. As an advocate, you may often need to challenge or debate the advice of doctors in just the same way as your loved one would have done, had they been able.
In choosing a home, it is vital that the care home managers understand and accept that, while professional advice is essential, you will be taking the decisions. That is why it is so important to prepare well in advance, and have detailed discussions about care, when drawing up powers of attorney.
Michael Maslinski
Michael Maslinski’s book What Would Maggie Do? is now available to buy from retailers such as Waterstones and Amazon. His story gives unparalleled insight into the challenges within the care sector and the NHS, with an aim to spark meaningful change.
All views expressed are those of the author and are presented for information purposes only. The information provided in this article is of a general nature and is not a substitute for specific advice about your own circumstances. You are recommended to obtain specific advice from a qualified professional before you take any action or refrain from any action.
