Being a caregiver for a loved one with dementia requires you to make many decisions. There are the day-to-day, mundane decisions –what should we eat today? what errands should we run this morning?– to the large and serious ones – is it time to move Mom into a community? As the disease progresses, you find yourself having to make new decisions in order to make sure your loved one receives a high quality of life. This can be exhausting and overwhelming, especially if you feel adrift and alone.
“While your loved one may be able to make decisions on their own at the beginning of their dementia journey, you may end up in a position where you’re required to make decisions for them, which can be very stressful,” says Addi Ricci, Executive Director at Bridges® by EPOCH at Norwalk, located in Norwalk, CT. “However, it’s important to balance your loved one’s feelings into every decision you make. As much as possible, you should include the individual with dementia in your discussion and listen to their opinions. It is, after all, their life and well-being you’re discussing, and they have every right to help direct their care and decisions in whatever way they can.”
The Importance of Shared Decision Making
Shared decision making (SDM) is a term that’s used in dementia caregiving circles as a shorthand for best practices when it comes to making decisions about and for individuals with dementia. It basically means that decisions are made together, with caregivers, healthcare team members, family members and other involved parties making judgment calls based on the desires of the person with dementia.
Depending on the phase of the disease your loved one is in, he or she will be able to be the point person when it comes to making a final call on decisions. Eventually, he or she will no longer be able to make those tough decisions, so it’s important that the team understand, discuss and respect their wishes as much as they can.
If your loved one is in the early stages of dementia and is still able to make decisions for him or herself, be proactive. Sit down and have discussions about how they want their future care to be handled. The sooner these decisions can be made and documented, the easier it will be for everyone down the road. Even if your loved one is in the later stages of the disease, they can still make judgment calls and decisions about their treatment – it’s never too late to have a discussion.
Here are some advanced planning tips for documenting, sharing and following your loved one’s wishes:
- Ask specific questions and listen to the wishes of your loved one with dementia. Does he or she wish to be moved to a memory care community as early as possible, or would in-home care be preferable? Who would they like to have power of attorney? What treatment options are they okay with?
- Make decisions about their future care and write it down so it can be shared more easily. That way, when events arise, there won’t be any gray area – you will already know what your loved one wishes.
- Be sure to include appropriate parties in the discussion, including financial advisors and health team professionals.
- Understand that the plan can be fluid and may need to be revisited as the disease progresses.
Making Hard Decisions
Maintaining quality of life is of huge importance when making healthcare decisions for your loved one. As the disease progresses, their body may continue to be healthy while their minds are deteriorating. That means you may be faced with a highly difficult decision about treatments for physical health. For example, while a pacemaker may be needed for health reasons, is that something that’s really within the care plan if your loved one is in moderate-to-late stage dementia?
This can be especially complicated and emotionally difficult when it comes to end-of-life decisions. You may find yourself confronted with a decision to make a judgment call on whether extending life will be beneficial to your loved one’s quality of life, to make a treatment decision based on the person’s comfort at one end of the spectrum and extending life or maintaining abilities for a little longer at the other.
It’s best to consider the goals of the care being recommended and weigh the risks, benefits and side effects – something that’s easy to say when you’re removed from the situation. Fortunately, there are resources you can use to help when it’s time to make those decisions. Hospice and palliative care staff can be helpful during this time, as can professional therapists or even spiritual leaders.
Things to Consider When Making Decisions
While nothing can instantly make caregiver decisions “easy,” here are some tips you can follow to help master and make the best decisions possible for your loved one with dementia.
- Be respectful. Listen, and then listen some more. Even if your loved one isn’t able to verbalize what they want, they can still express preferences in some way. Always take your loved one’s preferences and values into account when deciding for them.
- Be patient. Don’t make rush decisions – give everyone involved time to absorb, process and come to a conclusion. Remember that even if you have processed the decision fully, others may be hearing about it for the first time.
- Be a grown-up. That sounds a little harsh, but what it really means is “make the grown-up decisions.” It’s okay if you want to scream into a pillow and stomp your feet. It’s okay if you shed some tears. But after that happens, you should make the grown-up decisions – even though it’s hard.
- Be kind. Remember that even if your loved one won’t remember or can’t understand what’s going on, they can still feel – and you’ll remember how you reacted. Approach every decision with kindness and understanding, for your sake as well as theirs.
- Ask for help. You simply can’t – and shouldn’t – have to make all the decisions on your own. Enlist the support of family members, friends and professionals to talk through options and help shoulder some of the burdens. Simply knowing that there are others out there who can help will help ease your stress.
- Don’t sweat the small stuff. While making the “big” decisions is important early on, understand that the smaller things don’t have to be nailed down and set in stone right away – or at any time. Ask yourself, what needs to be decided right now? Tackle one thing at a time and keep your perspective.
- Care for yourself, too. Being a caregiver for your loved one is demanding and stressful. Make sure you take time out for yourself in order to preserve your health and well-being. Find time to do the things you love and get a break – whether that’s having an in-home caregiver come in a few times a week, or having a friend run errands or using adult day care services at a memory care community like Bridges® by EPOCH at Norwalk.
If you would like more information about making decisions for a loved one with dementia, or for more information about our unique assisted living memory care community, contact us on our website.
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 about Bridges® by EPOCH at Norwalk or to schedule a personal tour.