Being a caregiver for a loved one with dementia requires making many decisions. There are the mundane ones that happen every day – what should I make for dinner? What activity should we do this afternoon? – to the larger, serious and tough decisions such as is it time to move Dad into a memory care assisted living community? As your loved one’s condition progresses, you will have to make more and more decisions that ensure he or she lives the highest quality of life possible. This can be overwhelming and exhausting, adding stress to your already heavy caregiving workload.
“While your loved one may be able to make their own decisions about care at the beginning of their journey, you will eventually find yourself in a position where you need to make some tough calls about their care,” says John Moniz, Executive Director of Bridges® by EPOCH at Hingham. “However, it’s important to remember that you are doing this out of love so that he or she can live the best possible life. It’s important to consider your loved one’s feelings with every decision and, as much as possible, include them in your discussion and ask their opinions. Since you are making decisions about their care and well-being, they have every right to provide input and share their feelings.”
The Importance of Shared Decision Making
Shared decision making (SDM) is a term used for the process of making decisions together – not just with the person who has dementia, but also with other caregivers, family members, healthcare team members and other necessary parties. Depending on what stage of dementia your loved one is in, he or she may be able to make the final call – or not. Eventually, your loved one won’t be able to make the tough decisions anymore, so it’s important for everyone to recognize when that point has arrived and know what must be done to respect your loved one’s wishes as much as possible.
If possible, meet with your loved one during the early stages of the disease and discuss their wishes for future care. The sooner these decisions can be made – and the more that can be made by your loved one – the easier it will be for making those tough calls down the road. But even in the later stages of the disease, remember that he or she can still make judgement calls and decisions, and it never hurts to have a discussion.
Here are some tips for putting plans in place that will allow you to follow your loved one’s wishes:
- As soon as possible, ask specific questions related to your loved one’s future care. Does he or she want to be moved into a memory care community early on in the dementia journey, or would your mom or dad like to be cared for in-home by hired and family caregivers? Who will be powers of attorney? What sort of medical treatments would they like, and what would they not like?
- Once decisions about future care have been made and agreed upon, write them down (this is also known as a living will) and share them with necessary parties. That way, when a decision needs to be made, you won’t have to guess about what to do – you will already know what he or she desires.
- Make sure that any discussion, present or future, is open to and shared with all appropriate parties, including health team professionals and financial advisors, among others.
- Understand that decisions are fluid and plans can change. You may want to revisit the care plan as your loved one’s disease progresses.
Making Tough Decisions
Maintaining your loved one’s quality of life is the ultimate goal of any care plan, and it’s something you must keep in mind when making care decisions for them. As your loved one progresses through their dementia journey, you may find yourself having to make a medical call on something you hadn’t thought about. For example, let’s say your dad needs a pacemaker. Is that something that you want to give the go-ahead for if he’s in moderate or late-stage dementia?
Some of the toughest decisions caregivers have to make revolve around end-of-life care. You may find yourself having to make a judgement call on whether extending your loved one’s life through artificial means is the right thing to do. Or would their comfort and quality of life be better to not pursue the treatment?
These are just examples of some of the decisions you may find yourself facing as a caregiver. When you are in a situation where you have to make a tough call, it’s a good idea to take a step back, take a deep breath and weigh the pros and cons of both sides of the situation. Yes, that’s easy to say when you’re not in the middle of it. However, there are some tips you can follow that will help make decisions, if not easier, more manageable. Remember also that you have resources to help guide you, such as hospice or palliative care staff, as well as therapists and other medical professionals.
Tips for Making Tough Decisions
1. Be respectful. Listen to your loved one and the information you’re receiving. Then, listen some more. Even if your loved one isn’t able to verbalize what they’re thinking and feeling, there are still ways that they can express preferences. If you’re making a large decision, such as deciding to move him or her into memory care, consider your loved one’s values and preferences and think about what they would want. Ask yourself, “how and where will my mom receive the best care and the highest quality of life possible?”
2. Be patient. Whenever possible, don’t make a snap judgement. Although sometimes you may need to make a quick decision, give yourself as much time as possible to absorb the facts, process the pros and cons and come to a conclusion that feels right. Hopefully by planning ahead and thinking through different scenarios, you won’t find yourself in a situation where you have to make a rush decision on a tough subject.
3. Understand that tough decisions are, well, tough. No one really likes making tough decisions. Inside, you may be kicking and screaming and want to bury your head in the sand to avoid making a decision. That’s perfectly normal. It’s okay to have a moment, but after you’ve done so, it’s time to put your grown-up pants on and make the tough call. You don’t have to like it, and it probably won’t be easy. And that’s okay.
4. Be kind. Always, always choose kindness when you have the option. Remember that even if your loved one can’t understand what’s going on or won’t remember what’s happening, they can still feel and process emotions, and the way you treat them will affect their health and well-being. In honor of the person they were and still are, approach every decision with understanding and kindness.
5. Ask for help. There’s no shame in asking for help, especially if you have a big decision that’s troubling you. Talk to a friend or therapist, enlist the support of your family members and find ways to process the decision and support yourself. Simply talking through your thought process can help you feel better about your decision, or help you come to the correct decision that you might not have thought about.
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.