For everyone with Parkinson’s disease, Alzheimer’s disease or any other neurodegenerative disorder, there is almost always someone who walks alongside every step of the disease progression. It’s not the doc tor, or nurses or anyone from the local Parkinson’s disease association doing the twenty four hour shifts. It’s the partner.
Partners are the ones who provide the other pair of ears and eyes during endless doctor’s visits, who double check medication, take over more domestic chores, look ahead and have plans in place to anticipate and manage day-to-day difficulties.
Partners tend to get forgotten in the daily grind of degeneration. Interactions with other people increasingly become focussed almost solely on the patient –c hanges in sleep, gait, speech, mood, activities, skills, memory and so on. Maybe the partner gets asked the odd, “And how are you?” – usually from reflex politeness rather than genuine interest.
Just as Parkinson’s is an insidious disease that creeps up and takes things away, the effect on the life of partners is just the same – insidious and inexorable. Partners, without really thinking about it or even intending to, put aside their own interests, passions, needs, feelings and emotions.
Partners learn to work around another’s mood while ensuring they present a calm and coping face to all, especially at home – no matter what. It isn’t necessarily a deliberate choice, it is the way they have learned to get through each day, especially the difficult days.
Partners have just as much grief as the patient when the diagnosis is confirmed. The partner feels guilty for this reaction. They shouldn’t . Every step of the progression of a degenerative disease brings new levels of loss and difficulty to the partner as well as to the patient. Each experiences it differently, but the magnitude for both is real. For partners, the increasing and unacknowledged pain at the subtle erosion of a relationship gets harder to contain.
The patient has permission to be open about these emotions, but the partner tends to hide it, because things run more smoothly if they do.
If you are a partner, please don’t try to do it alone. Find help. The many Parkinson’s and Alzheimer disease associations around the world often have good people to talk to and ways for you to spend a bit of time with your real self, not the person you may have been required to become.
Don’t feel guilty. There is no shame if you struggle to live with and care for someone with a progressive degenerative disease.
The shame is that our systems tend to take you for granted. And maybe families do the same thing.
Look for help, ask for help and don’t be shy of accepting help. Your needs are just as important – and in many ways, they are more important.