Being the spouse of someone who has dementia or Alzheimer’s disease comes part and parcel with some very complicated feelings. You fell in love with that person, made memories and had full lives together. It is extremely difficult to watch as they slowly forget who you are and everything you’ve lived through together. The vows you made standing side by side at the altar, “‘til death do us part” and “through sickness and through health”, now feel like impossible asks. Your loved one is no longer the person you used to know, and yet your feelings of responsibility and love are real, especially knowing that they might not have a lot of time left.
Spouses are often the ones that have the most to do with the responsibility and care for the person with dementia. They are the first to notice new symptoms and most often the one who liaises with medical staff and carers – playing an integral role in their well-being and care. But they are also sufferers, as they lose their best friend, partner, or soulmate and have their own lives turned over in an instant of receiving the diagnosis. All too often they deal with partners who become increasingly aggressive, and sometimes abusive, due to the progression of the disease making them more agitated and confused.
Loving someone with dementia can be extremely lonely, and even isolating, especially if the spouse is the primary caretaker. At least if the partner is in a dementia care facility, the spouse can go on to lead a full life and take care of themselves knowing their loved one is receiving expert care. As time goes on, a new normal develops and the relationship with the spouse who has dementia starts to take on a different role. No longer a romantic love, but still a deep familial love. When this happens, many spouses start to move on – but it’s often coated with guilt and self-loathing, even though a new relationship could bring them great happiness.
What are the moral implications?
The moral implications vary from person to person, because morality is a personal thing. In a perfect world, one would hope that the spouse who has dementia would want their loved one to always be loved and love in return. That any guilt or self-loathing would be completely unnecessary. However, it is not that simple in the mind of the spouse who is ‘left-behind’ carrying the burden of their wedding vows. Not only is it difficult to mentally and emotionally move on when your spouse is still alive, but there are also societal pressures that play a role. There is a lot of pressure to continue to be the devoted husband or wife until the very end, and there will be family members and friends who are quick to make assumptions without much personal experience with dementia.
Deciding whether or not to move on to new relationships is an intensely personal decision and one that other’s opinions should have no say in. Whether it is moral or not is up to the spouse and their loved one with dementia. This is a topic we should be exploring more on, as a society, as we are living much longer due to better healthcare and living conditions. It is predicted that Gen Xers could live to an average of 100 years old, and so we should be coming to terms with these kinds of dilemmas since we will be facing them more often in the near future.
On marriage and the law: in some cases, the spouses feel more comfortable (however painfully difficult the decision is to make) to rather divorce the person with dementia, which can be done in South Africa if a High Court declares that person incapable of managing his or her own affairs due to mental incapacity.
Moving on when your spouse has dementia
From the day that you hear their diagnosis, your role in the relationship starts to change. You had to alter the way you see your spouse; they went from husband/wife and lover to patient and eventually, you will be a stranger to them. Your roles are no longer equal, as you will be doing the bulk of everything that you once shared.
Our advice, whether you decide to move on from your spouse or not, is that you join a support group. No one understands what you are going through more than someone exactly in your position. You can talk freely in a safe space about what you are going through, share your emotions and receive feedback and encouragement. You won’t have to deal with judgement or criticism from the people you will meet in a support group. Consider placing your spouse in a dedicated dementia care facility, as it is best for you and your loved one and could preserve the relationship for as long as possible.