When someone you love is diagnosed with dementia, it’s normal for family members and caregivers to become overwhelmed. There are endless ups and downs, with good days and bad days. There are times when your loved one behaves normally, and then suddenly there are times when they can’t remember who you are or even communicate. As a caregiver or family member, it’s easy to lose sight of the person your loved one was … and still is.
“One of the hardest things about the progression of dementia is that, beneath it all, your loved one is still the same person they were,” says John Moniz, Executive Director of Bridges® by EPOCH at Hingham. “Although they may not be able to communicate, they have the same emotions, feelings, needs and desires as they always did. They still feel and love and need your understanding – perhaps even more now than they did when they were healthy.”
In recent years, many individuals in the early stages of dementia have shared their stories about being diagnosed with dementia, their fears and woes and what the disease feels like to them. These first-person accounts are heartfelt, emotional and insightful because they give us a clear picture of what dementia is like for the individual.
“Understanding your loved one’s perspective and what they’re going through can help caregivers and family members provide the best care, compassion and understanding,” says John. “It is our responsibility to care for our loved ones in the most dignified, respectful and kind way possible. This means understanding what they want us to know and how they want to be treated.”
The article “8 Things People With Dementia Want You To Know” provides insight into this unique situation. Written by Rick Phelps, an individual diagnosed with dementia, it’s an emotionally charged, honest and touching view into the minds of those we love and provides some simple yet essential truths for caregivers and family members to understand.
“Rick’s article can be hard to read, but it can be a gamechanger for family members who wish to honor and support their loved ones along this journey,” John explains. “Ultimately, we all want the same thing: to be loved, to be respected and to know that we matter. These eight truths will help friends, family members and caregivers do just that for those living with dementia.”
1. Dementia is a disease, not a defining characteristic.
There is a reason we say that individuals are “living with” dementia – because they are still vibrant, loving people filled with opportunities to continue experiencing life. Dementia, like cancer or diabetes or any other disease, is something that your loved one is experiencing. It doesn’t change who they are, nor does it stop them from thinking, feeling, hoping and dreaming. A diagnosis of dementia doesn’t automatically mean that a loved one can no longer do things. There are still many things they can do and experience, and it’s important to look past the disease and focus instead on the individual. As Rick writes, “I have Alzheimer’s disease, but it does not have me.”
2. Your loved one needs your support – but not for you to do everything for them.
Individuals with dementia still desire to have meaning in their lives and live as independently as possible. The biggest mistake we can make as family members and caregivers is to take away all autonomy from our loved ones. Yes, your loved one may sometimes need help expressing themselves, understanding things or accomplishing tasks. That doesn’t mean that they can no longer talk, think, understand or do. As caregivers, it is our job to help our loved ones if and when they need it while allowing them to continue the things they are able to do for as long as they can.
3. Your loved one deserves and is worthy of respect.
Your loved one is an adult, and what they say and do still matters. Remember that, as much as possible, they should have control over their life, their care and their journey. Your loved one still has much to offer the world – and your family. Take this time to make memories with them, share their company and show them the dignity and respect they deserve.
4. Dementia is scary for your loved one.
Not knowing what lies ahead is scary. If thinking about the progression of dementia upsets and scares you, imagine what it’s like for your loved one, especially in the early stages. They never know when their brain will betray them or when they will no longer be able to understand what’s going on around them.
5. The need for compassion and love never goes away.
It is incredibly hurtful for your loved one when people pull away or reject them because of their diagnosis. This is especially true when your loved one doesn’t understand what they’re doing. Remember that they are in there here and now, and they don’t know why they forget some things or do things incorrectly. It’s important to love and support them regardless.
6. Even when abilities fade, your loved one is still there.
Your loved one can still interact, react and participate in life. Don’t talk around them or like they aren’t in the room with you. Talk to your loved ones in ways they can understand. Look them in the eye, smile at them and connect with them. Understand and appreciate that your loved one still wants to be involved in life and will try to do so for as long as they can.
7. Understand – as much as possible – their limitations and experience.
It’s very hard (if not impossible) for neurotypical, healthy adults to understand what someone with dementia is going through. Think about how you would feel if you couldn’t recognize things anymore or if those you loved became strangers. Your loved one doesn’t want this to be happening any more than you do. It’s essential to accept this and work together with your loved one, not against them, to help them live as fulfilled a life as possible.
8. Your loved one doesn’t mean to hurt you.
Dementia is a cruel disease. Caregivers and family members will all at some point experience a moment when their loved one says something hurtful or acts in a way that’s painful. Know that they are not doing it on purpose. Know that they do not mean to hurt you. Their actions are being caused by the disease, not by how they feel about you. Never blame the person; always blame the disease.
Living with dementia is emotional, trying and hard. But by understanding what your loved one is going through and treating them with compassion, love and respect, both you and they will find a state of grace that will help them along their journey and sustain you for the years to come. As the great songwriting duo Lennon and McCarthy wrote: “And in the end, the love you take is equal to the love you make.”
Exceptional Care & Fulfilling Lifestyle
Bridges® by EPOCH at Hingham 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 offers a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – enriching the lives of our residents every day.
Inspiring Programs for All Stages
No matter what level of care or service is needed, residents and families can rest assured that our care and life-enrichment programs address the various stages of memory decline, allowing residents the opportunity to age in place.
Dedicated Memory Care
At Bridges® by EPOCH at Hingham, our 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 a high level of personalized attention for residents in various stages of memory loss.
Bridges® by EPOCH is New England’s largest stand-alone memory care assisted living provider.
Contact us today to learn more.