We all know in the back of our minds that someday our lives will come to an end. Perhaps you’ve already done some future planning, such as making a will or done estate planning. However, many of us have not thought about end-of-life planning. It’s not a very fun topic to discuss or think about, so it’s no surprise that we will often delay the matter to discuss “later.” If your loved one has been diagnosed with dementia, though, “later” can be too late to determine your loved one’s wishes and honor their preferences.
“End-of-life planning can be an emotional and difficult conversation with family and care teams,” says Addie Ricci, Executive Director at Bridges® by EPOCH at Norwalk, located in Norwalk, CT. “Unless you speak honestly and openly about these topics, though, how will you know and respect your loved one’s wishes for their final days?”
In an ideal world, she says, it’s best to address end-of-life planning with your loved one while they’re still able to express their feelings, emotions and desires as coherently as possible. Even if your loved one is in the later stages of dementia, you can and should still include them in any discussions related to their future.
“No matter what, your loved one is an adult and deserves as much say in their future as possible,” says Addie. “Asking the right questions, getting paperwork and legal documents in order and thinking through end-of-life planning in a logical and rational way will help everyone have peace of mind for the future.”
Legal Documents for End-Of-Life Planning
Because your loved one will not be able to express their end-of-life care wishes when the time comes, it’s important to not only have discussed their choices with them, but also have certain legal documents in place that will help you as their caregiver decide on choices for treatment and comfort care.
Advance directives are a certain form of document that allow your loved one to record their preferences and wishes such as funeral planning, comfort care and other things. Advance directives include living wills, DNRs and medical power of attorney. Here are some questions advance directives can help family members answer:
- How does your loved one want to spend their last days? At home? In a medical facility?
- What are your loved one’s beliefs (cultural, spiritual or religious), and how can they be honored?
- What types of treatments are desired, and what aren’t?
Hospice and Comfort Care
When it comes to planning for end-of-life, decisions should be made as to what type of care, and how much, your loved one would like in the final stages of dementia. Palliative care and hospice care is almost certainly something your loved one will require. Palliative care can begin at any time and at any stage of the disease, and is used to address and manage symptoms of the disease or side effects from medications. It’s meant to provide comfort and well-being, and can be used in tandem with life-sustaining treatments. Hospice care, on the other hand, requires a doctor’s order and is given when it’s determined that life expectancy is less than six months. During hospice care, curative measures are stopped and the focus becomes on making the individual comfortable by controlling symptoms, pain and other discomforts.
Defining what life-sustaining treatments should be considered (or not) is a very important part of end-of-life planning. As dementia progresses, the body and abilities will continue to deteriorate until the individual may not be able to sustain life without invasive treatment. Some of these treatments include feeding tubes, CPR, surgery, respirators and others. How long would your loved one like to continue medical treatment at this stage? What point is “too much?” This is a very personal decision, and is different for each individual. You and your loved one may wish to discuss with the care team, doctors, spiritual advisors or therapists.
Funeral and Burial Arrangements
Thinking about our own funeral or the funeral of our loved one can be distressing and sad. However, many of us have wishes for our remains that we’d like to have carried out. By planning ahead, your loved one can let you know exactly what he or she wants to happen. This can reduce the stress of family members and bring peace of mind during a sad time. Here are some questions your loved one can address:
- What kind of service would he or she like to have?
- Would he or she like to be buried or cremated?
- Is there a pre-paid burial plan in place?
- What types of flowers, music or other details should be considered?
What to Do If End-Of-Life Wishes Aren’t Known
It’s possible that your loved one may reach a point that he or she can no longer communicate end-of-life wishes before there’s been time to make plans. If this happens, family members and caregivers will need to make decisions without a guide such as a living will.
Addie suggests that the first step family members should take is to put themselves in the shoes of their loved one. “Think about what you know about your loved one and try to make decisions based on that,” she says. “What was important to your loved one? How did he or she live, and what types of things did she value? If you could ask him or her a question, how would they answer?”
It’s also important to think about your loved one’s best interests. Would they want to have surgery to replace a hip or remove a tumor if they are in the late stages of dementia and won’t get better? Is he or she in pain, and what is their quality of life like? Would the suggested course of treatment offend their dignity?
These are difficult questions to answer on behalf of your loved one. The best thing you can do, says Addie, is talk to others in the situation with you (like family members or care team members). You can also use a mediator to help manage opinions and discussions. Look for an expert who has experience in dealing with end-of-life issues and is compassionate and caring.
“At a memory care assisted living community like Bridges by EPOCH at Norwalk, we understand how important and emotional the end-of-life can be for both our residents and their families,” says Addie. “We have helped many family members walk the journey of dementia from beginning to end-of-life with compassion, care and understanding. We consider it our honor to help others during this time and provide the very best care for individuals with dementia and their loved ones.”
Compassionate Care for All Stages of Memory Loss
Bridges® by EPOCH at Norwalk provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created 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 – making a truly positive impact on the lives of our residents each and every day.
Personalized Services
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 a high level of personalized attention for every stage of memory loss. At Bridges® by EPOCH at Norwalk, our residents have it all for one simple monthly fee.
Community Amenities
Within a beautiful residential design, Bridges® by EPOCH at Norwalk provides everything residents with Alzheimer’s disease and other dementias need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a peaceful and secure environment where residents feel at home.
Contact us today to learn more.