Coping with the changing relationship with your spouse once she is diagnosed with dementia

Marriage is a scared union between two people, where the couple vow to hold on to each other for better or for worse, in sickness and in health, until death separates them apart. But what happens when one of the loved one does not remember, not only the vows, but the spouse with whom he/she took the vows?

Dementia is a chronic brain disorder which tends to have an effect on an individual’s memory and other cognitive abilities, like cohesive thinking, problem solving and language. Due to lack of awareness, understanding and knowledge, people are still taking their time to acknowledge dementia as a disorder. As hard as the diagnosis of dementia hits anyone, it most certainly disturbs the spouse the most.

Imagine to have lived almost all your life with someone and waking up to a realization that she has minimal recognition of you, moreover she has minimal recognition of herself. Let’s look at some of the challenges faced by couples once one of them is diagnosed with Dementia :

  • Definition of marriage changes from romantic partnership of emotional and physical intimacies to a care partnership.
  • The couple gets affected because there is lack of shared activities, emotional support from the other half and most primal of them all, a lack of verbal conversation.
  • Most of the time, the spouse tends to suffer from emotional strain of frustration and annoyance and one third of them tend to suffer from depression.
  • The couple experiences a profound sense of grief, because they feel robbed off their identity as a couple.
  • There is difficulty in continuing with the old social life that the couple once had, for example, going for movies, attending weddings or parties etc. Many a times the partner feels embarrassed because of the spouse’s responses. Also a lack of contribution in conversations results in withdrawal from social circles.
  • The caregiver spouse tends to suffer from a sense of isolation and abandonment.
  • Women caregiver spouse, tend to suffer the most because of painful role reversal and lack of support from the other half. She is now burdened at the domestic front as well has to take control of all the financial, logistics and paperwork.

Understanding the loss of a perfect marriage and recreating the union with new set of vows

It is very challenging to cope with someone who has dementia because the spouse tends to become the primary caregiver, which leads to drastic change in the dynamics of the sacred union called, marriage. This change in dynamics and the diagnosis of the other half is understood only by a level of acceptance, love and duty, keeping in mind the vows that formulate the roots of this relationship. Here are some ways on how to introduce yourself to the new set of rules, how well to adjust to this relationship which has its roots running deep in the dearth of care, and lastly what do and how to cope with your own vulnerabilities.

  1. The First step is to be “Aware”. Once dementia is introduced to the family, it is important to be aware of the disorder, to understand the symptoms, progression, treatment and management of the disease. One should re-look at the financial implications to support the care, treatments and medicines, and lastly be aware of the emotional stress that may impact the relationship.
  2. The second step is to “Accept”. One needs to accept the onset of symptoms, not to take it as an age related behavior, rather accept it and act on it. The couple needs to understand the change in dynamics, the consequences that shall arise and it is very important to accept the partner’s vulnerabilities as he battles with the disease.
  3. The third step is to “Acknowledge” one’s own health. While the spouse gets too engrossed in taking care of the other, it is often noticed that he/she stops taking care of themselves and acknowledging their own health. It is very important to take care of your own physical health needs such as medicines and regular checkups along with the emotional health needs.  One should engage in relaxation exercises like regular walks, socializing with people and practicing yoga.
  4. The fourth step is to “Indulge”. To avoid the sense of loss, abandonment and isolation, the caregiver needs to indulge in self-help activities, to stimulate and re-energize oneself with hope and belief to be able to provide positivity in the new changed relationship. It is important to indulge as a couple and participate in activities which may cognitively stimulate the spouse, reminiscence the old days (looking at old photos, listening to old songs etc.) and to rejuvenate the new relationship on the grounds of an old one.
  5. The fifth step is to “Seek help”. It is important to seek professional help once the spouse is diagnosed with dementia. Enroll in dementia support groups or look for places that provide professional help more coherently, be part of a circle that understands the disorder and empathizes with your vulnerabilities. Try to ease the burden of caregiving by hiring a good caregiver who could support in dealing with challenging behavior and personal care. The caregiver spouse should also enroll friends and relatives who could support in times of need. Start with making them aware about dementia and seek help in whatever way possible – logistics, emotional support, respite care or just good companionship.

Being a caregiver is very hard, especially when the sufferer is one’s own spouse and has been diagnosed with dementia. As a spouse one may feel loss of the partner, a loss of identity and the painful role reversal. With a sense of belonging, understanding and accepting one may achieve the little gratitude towards making someone else’s life meaningful, with a quality check on theirs as well. This can happen only if we acknowledge the above five points, have patience and empathy towards the loved one and live life ‘One day at a time’ –  this one vow will be enough to help one move forward with dignity and compassion.