Question
I am about to retire, and I know that I have left it a bit late – I loved my work and decided to stay beyond the usual 65 age limit. It took me a good few years to get my head around not being my professional self – to be honest I enjoyed the importance and validation that my later years at work provided for me, and in that way, I am not sorry I stayed as long as I did.
My wife and I argued about this a lot, as she wanted me to retire five years ago and had plans for travelling and “rewilding”, as she called it. But I have a stubborn nature, and so I kept putting it off. Our son then had a baby, and my wife got busy helping with the childminding and things settled, and so it continued. Last year, I agreed to one more year at work and we began making plans for extended travelling, and for the first time in ages, it felt that we were in love again.
Then, the unthinkable happened – my wife has been recently diagnosed with dementia, and her decline is noticeable.
It seems that she will need ongoing care, and all the travel plans have had to be ditched. I am angry that this has happened to her and upset that we have not had the chance to realise our dreams. But I am also angry at myself, for not listening to her and not taking the opportunities when they still existed.
A part of me is also resentful of the almost full-time caring role I’m about to step into, and for being such an idiot.
Answer
We have an idea that we deserve a good retirement, that we have earned the right to good times, good health and some financial comfort at this stage of life, but of course we have no control over this. Life continues to challenge us, to present us with hardships and sadnesses, and we must find a way to bear this with grace and equanimity. You are full of grief and regret, and this is something you will need time to process; time to come to terms with the difficulties ahead and time to adjust to your new reality. It is so tough that you and your wife had refound your connection and delight in each other, only to have dementia limit your hopes for the future.
While much of your situation is outside your control, the parts of this that you have some capacity to tackle are your resentment, regret and anger. All these emotions are natural responses, but if they go on too long, they can blind you to moments of joy and add extra suffering to your life.
Radical acceptance and compassion are powerful antidotes to these negative emotions, and these attitudes can be learnt and practised. Accepting what is going on is the only sane thing to do, and the sooner this happens, the more support you can put in place for you and your wife. As your resentment and anger recede, you might find that you have space for love of your wife and self-care for yourself. This will only happen with knowledge and support and through connecting with support services such as the Alzheimer society. Alternatively, you can look up Government services.
Connecting with support groups not only helps you to confront the situation, but also normalises your responses and offers you the wisdom of those who have and are living with a partner with dementia. Your wife will require you to adapt how you communicate, she will need a supportive environment, and most of all she will need a caregiver who is functioning and well in themselves. It is crucial to accept that the relationship will change, and you will now need a selection of other meaningful relationships to meet your own need for validation and love.
This means drawing on your friendships and deepening them by being honest and asking for support and companionship during time away from caring. Try to be honest with your feelings and tell your friends you need to bounce such emotions off them without any expectations that they can fix things or offer solutions.
You will find that you have resources within you that you have not yet realised, but allowing them to surface will require self-compassion and letting go of guilt and anger
You just need them to walk the journey with you and allow them the privilege of being there for you. Trust that the friendships will be robust, and your time will come to support them in the future. These new circumstances will require adjustments, your wife needs you to learn new skills: key strategies include using simple language, maintaining eye contact, and giving your wife time to respond. Creating a structured and calming routine at home is important for both of you, so take time to plan and talk this over with your children and other carers that might be involved in your wife’s overall care.
You will find that you have resources within you that you have not yet realised, but allowing them to surface will require self-compassion and letting go of guilt and anger. This is not self-indulgence in the face of tragedy, but rather the corner stone of the future for you and your wife.
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