A diagnosis of dementia is life-changing, not just for the individual who has it, but also for family members. Cognitive diseases like Alzheimer’s or other forms of dementia touch the lives of everyone who is close to the individual, and every family member will have to navigate the transition of their relationship with that person.
“We often speak of the family members as the ‘invisible second patients’ because of how much the disease affects their lives,” says Addie Ricci, Executive Director at Bridges® by EPOCH at Norwalk, located in Norwalk, CT. “Different family members may react differently to the initial news, and everyone will need their own amount of time to acclimate to the new reality.”
Addie says that the feelings each family member has is often influenced by their current role in the family as well as their future role. “For example, a wife may find that she will become a caregiver as well as a spouse, while an adult child will find themselves having to parent their parent,” she says. “Grandchildren or other younger family members may not fully comprehend what’s happening. It’s a lot to swallow for everyone, but with patience and understanding, your relationships can still remain loving and positive throughout this journey.”
The Role of Adult Children
When a parent is diagnosed with dementia, adult children understandably have unique difficulties when it comes to dealing with the diagnosis. One of the biggest stressors is role reversal. Many times, one or more of the adult children will take on caregiving responsibilities, or become power of attorney for health or financial matters. In a sense, they find themselves “parenting” their parent more and more, which leads to a variety of different feelings.
It’s not uncommon for adult children to feel guilt, anger, denial, frustration and sadness following a dementia diagnosis. How each person feels will depend on what their relationship with the parent was like prior to the diagnosis. For example, an adult child who was dependent on their parent for support (emotional or financial) may find it particularly difficult to realize they can no longer rely on their parent as they had in the past. Other children may have had a strained relationship with their mother or father, and now that they have to step in and take care of them, they’re dealing with conflicting emotions.
If you’re an adult child dealing with the dementia diagnosis of a parent, here are some things to consider:
- Seek out a support group for adult children of those with dementia.
- Find a close friend, family member or professional with whom you can talk about your situation without worrying about judgement.
- If you’re a caregiver, look into respite care options in order to keep yourself from stretching too thin.
- Ask for help from friends or family members and have specific tasks in mind. You could ask your sister to help manage finances, or your brother to help transport Mom or Dad to their various medical appointments.
The Role of a Spouse
The spouse of the person with dementia is often the family member most affected by the dementia diagnosis. This is because they’re, in a sense, losing their spouse and having to step into the role of a caregiver. There’s often a sense of deep loss, as their plans for the future suddenly change in a drastic, severe way. Spouses can also struggle with a wide variety of emotions (just like adult children). Guilt is a common feeling among spouses, especially if they’re struggling with the ideal of “in sickness and in health” and feeling resentful, angry or disinterested in their spouse following the diagnosis.
However, a dementia diagnosis does not have to mean that the spousal relationship will have to go away. Some couples report that their relationships are stronger than ever following a diagnosis, because they focus on spending time together and making memories while it’s still possible. As the disease progresses, however, the relationship will continue to evolve, so it’s essential for spouses to seek support and assistance as early as possible. As much as possible the couple should make plans together to ensure peace of mind for both the spouse and the partner with dementia (such as financial plans, determining care options, etc.).
If your spouse has been diagnosed with dementia, here are some suggestions for helping to plan for the journey ahead:
- Seek out assistance as soon as possible. If necessary, enlist family members and friends. They can help with research and sourcing assistance as well as daily tasks.
- Find a support group for spouses of those with dementia. Having a network of people who have gone through or are going through the same things as you will be a boon in the time ahead.
- Work with your spouse to make decisions for care, finances and healthcare as early as possible. By working together with your spouse, you will be able to better respect his or her wishes, and you’ll have peace of mind knowing that you won’t have to worry about making these decisions down the road – they’ll already have been made.
- Research memory care communities in your area as soon and you and your spouse are emotionally ready to do so. Although it’s not pleasant to think about, dementia is a progressive disease and your loved one will eventually require around-the-clock care. Many senior living communities have both assisted living and memory care options, which allow spouses of different health levels to remain together while receiving the care they need.
“The most important part for families to remember is that this is a team effort and working together will help everyone cope and move forward following a dementia diagnosis,” says Addie. “Consistent communication and getting together on a regular, ongoing basis will give everyone a chance to communicate and be updated with what’s going on. Sharing ideas, having discussions and determining together what needs to happen will help you support your loved one in the best possible way.”
Expert, Life-Enriching Memory Care
Bridges® by EPOCH at Norwalk provides memory care assisted living that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia, our community promotes a wellness-focused lifestyle that emphasizes dignity and individual preferences. Our memory care professionals receive specialized, ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents.
Inspiring Programs for All Stages
Bridges® by EPOCH at Norwalk’s services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide personalized attention and programming for residents in every stage of memory loss.
Purposeful Community Design
Within a beautiful residential design, Bridges® by EPOCH at Norwalk provides everything residents with Alzheimer’s disease and other forms of dementia need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel at home.
Contact us today to learn more.