As a caregiver for a loved one with dementia, you already know that decision-making is a big part of your job. There are the little, everyday ones that have to be made, like what should we have for dinner? And then there are the bigger, more serious and tougher caregiving decisions like does Mom need to move into a memory care community?
“As dementia progresses, you will naturally need to make increasingly difficult decisions about your loved one’s care and well-being,” says Reshma Nair, Executive Director of Bridges® by EPOCH at Andover, a memory care assisted living community in Andover, MA. “Eventually, you may need to make tough calls when it comes to their health, their care and their safety. While this can be stressful and may even make you feel guilty, it’s important to always keep in mind that you are doing this so your loved one can live the best life possible.”
Reshma says that, whenever possible, it’s important to include your loved one in the decision-making process. This, she explains, is a technique called shared decision-making or SDM. “Always remember that your loved one is still an adult and should be treated as such, which means allowing them the opportunity to share their feelings and provide input about their own care and well-being. While ultimately you will be the one to make the final call, it’s a sign of respect and dignity to make sure your loved one has a say.”
The Importance of Shared Decision-Making
Shared decision-making isn’t something that happens just between you and your loved one with dementia. It also involves family members, other caregivers, medical professionals and other necessary team members. If your loved one is still in the early stages of dementia, he or she may be able to have the final say when it comes to making the decision. In the mid to late stages of dementia, the caregiver or the power of attorney will need to make the tough decisions.
If it’s possible, it’s best to sit down with the person with dementia as soon as the disease has been diagnosed so you can discuss their wishes for future plans, care and other decisions. The sooner those decisions can be made, and the more input your loved one can provide, the easier it will be for you and other individuals to make the tough decisions down the road.
Finally, don’t forget that your loved one can still make judgement calls and decisions even in the later stages of the disease. While it may fall on you to make a hard decision (for example, your loved one may not want to move into a memory care assisted living community, but you know it is the best choice for their health and well-being), it never hurts to have a discussion.
Here are some tips that you can use to put plans into place so that you can follow your loved one’s wishes and requests.
Ask questions about the future as soon as possible.
Would Mom or Dad like to be moved into memory care assisted living somewhat early in the dementia journey, before they need it? Or would they prefer to have family caregivers and in-home hired care for as long as possible? Who would they like to designate as powers of attorney? What sort of medical interventions would they like and what wouldn’t they like?
Write down decisions once they’ve been made.
Once future care decisions have been discussed, made and agreed upon, it’s a good idea to make a living will by writing down the decisions and your loved one’s requests. This helps ensure that, if and when a decision needs to be made, you already know what the person with dementia wants for themselves without having to guess.
Include everyone in the discussion.
Any discussion about future care and big decisions should be open and shared with the appropriate parties, such as family members, financial advisors, healthcare team professionals and other interested parties.
Realize that plans aren’t set in stone.
Be flexible. Understand that decisions can be mutable and plans can change. Depending on what happens as your loved one’s dementia progresses, you may want to revisit the care plan on a regular basis.
Making Tough Decisions When Your Loved One Can’t
The ultimate goal of any decision and care plan is to maintain your loved one’s quality of life. That’s something you must always keep in mind as the disease progresses. This is important to do because you may need to make a tough medical call on something you hadn’t discussed previously. For example, let’s say that Mom needs surgery on her heart to correct an underlying issue. Is this something you want to give the green light on if she’s in moderate or late-stage dementia?
Perhaps the toughest decisions you as a caregiver may have to make revolves around end-of-life care for the person with dementia. If your loved one is diagnosed with cancer, do you want to pursue chemo treatments? Or would it be better for their comfort and quality of life to instead pursue palliative care?
Those are just two examples of some of the many tough decisions you may face in this journey. Whenever you find yourself facing a tough decision, take a breath, pause and weigh the pros and cons of the situation. We understand this is easier said than done. Here are some tips you can follow to help make a tough decision a little more manageable. Don’t forget that you also have many resources that you can use to help make your decision, such as your healthcare team, hospice or palliative care staff, religious leaders or anyone else you trust to help guide you.
Tips for Making Difficult Decisions
1. Be respectful. Listen closely to the information you’re receiving from your loved one – whether verbal or nonverbal. Even if the person with dementia can’t verbally communicate their thoughts and feelings, they can still express preferences in other ways. If you’re making a big decision like moving him or her into memory care, think about your loved one’s preferences, values and desires and ask yourself what they would really want. Where do you think they would get the best care?
2. Be patient. Do your best to not make a decision off the cuff. Sometimes you may need to make a decision faster than you would like, but there’s always an opportunity to pause and think about it. Give yourself as much time as possible to absorb the information, think through the positives and negatives of all decisions, and come to one that makes sense and feels right.
3. Know that it’s okay if decisions are difficult for you. Honestly, no one likes making hard decisions. You may want to throw things, kick something or put your hands over your ears to avoid making decisions. That’s okay. You can even do those things if it will make you feel better. But after you’ve had a moment, you will need to make the tough call. It’s okay if you don’t like doing it and it’s perfectly fine if it’s not easy. Realize this is part of the process.
4. Be kind. Whenever possible, choose the option that’s the kindest for your loved one (and, by extension, you). Even though he or she may not understand what’s going on, recognize that emotions can still be felt, and the way they are treated will affect their well-being and health.
5. Ask for help. Big decisions don’t have to be made on your own. Talk to a therapist, friend or social worker, and enlist the help of trusted advisors to help you walk through and process a decision. Simply taking the time to talk through the different scenarios can help shed light on a tough situation or help you feel better about the decision you’ve had to make.
Exceptional Care. Engaging Lifestyle.
Bridges® by EPOCH at Andover provides specialized memory care in an assisted living environment that is comfortable, positive and welcoming. Built solely to care for those with Alzheimer’s disease and other forms of dementia, Bridges® by EPOCH at Andover creates a wellness-focused, engaging lifestyle that respects individual preferences, focuses on residents’ abilities and creates meaning in daily life.
Dedicated Memory Care.
Through every stage of memory loss, residents and their families have complete peace of mind. Our compassionate dementia care and unique programs are tailored to meet the physical, cognitive and emotional needs of each resident wherever they are on their own journey, allowing them to age in place safely, comfortably and with dignity.
Supportive, Purpose-Built Design.
Featuring a stunning residential design, Bridges® by EPOCH at Andover is much more than a beautiful place to live; it’s a community where residents’ lives are enriched and families enjoy meaningful moments together. Our research-based design features, including soft colors and lighting, directional cues, and aromatherapy, empower residents to explore their homes with confidence.
Bridges® by EPOCH is New England’s largest stand-alone memory care assisted living provider.
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