While terribly sad and tragic, the truth is that this is not an isolated incident. What happened with John K and his wife in Nebraska is certainly a tragedy, but the events leading up to it are far from unique.
Caring for and supporting someone living with any form of dementia, whether or not you are a professional or family member, takes patience, understanding and skill.
Caregiver burnout is real and potentially dangerous, so we wanted to share a few tips that you can implement to reduce your chances of experiencing it.
While many people think they know what Alzheimer’s is (memory loss, right?), most are unaware of the full scope. The truth is that all forms of dementia will affect every part of a person’s life (and at the time of this writing, there are about 120 known different types, forms and causes of dementia).
To be a true dementia, at least two parts of the brain are actively dying. This changes how a person experiences the world; how they perceive their surroundings, you and others. This is hard, but it is worthwhile for you to always try to remember that they are doing the best they can with what they have at that moment.
Those of us with healthy brains, we need to change, too. This is where you take your newfound awareness and knowledge, and practice the skills to match your person’s ability and support them where they are.
See if you can find a friend you can practice with, or consider joining one or our live, virtual Champion Courses to get immediate feedback and helpful tips from a PAC-trained and certified Mentor.
No matter how much you love someone living with dementia, it can be exhausting to care for and support them around the clock. You need a team and so do they. Having someone else, either a family member, a friend or a professional, can give your person something to look forward to as well as a giving you a break.
As dementia progresses, it can be difficult to add new people to the mix, so building in people and activities early on will be best for you both.
Staying engaged throughout the day used to be easy, but everything changes with dementia. A person living with dementia may look to you to tell them what they should be doing. They aren’t trying to be frustrating. Their brain isn’t working the way it used to, so they are turning to you for help.
Here are some ideas of things you can do together:
No matter the age or whether they are living with dementia, people want to feel valued. If you need some time to do things on your own, what are some activities they could do on their own?
You can start by asking them to help. Would you do me a big favour? You are so good at this, will you please… I don’t have time right now, could you please…
Depending on where they are on their journey of dementia and their GEMS State, you may need to show them what you would like them to do, but then their muscle memory may kick in.
Self-care is not selfish. Unfortunately, one of the leading risk factors to developing dementia is being the primary caregiver for someone living with dementia. Uh-oh. When you give and give and give, eventually your body begins to lose its reserves.
Finding someone to talk to, who can listen to you and support you, can give you the break you need and the validation that you are trying so hard. Local and online support groups can connect you with others that are in the same shoes you are in.
If you aren’t sure who to talk to, here are a few ideas for non-emergency situations:
Teepa Snow’s Positive Approach to Care – teepasnow.com. We offer free 30-minute consultations via Zoom or over the phone.
Also, we offer the Care Partner Support Series and weekly Champion Courses to grow your awareness, knowledge and skill. If you prefer to learn on your own, we offer several books, DVDs and other resources.
Area Agency on Aging – located in each state, this is a place you can turn to for help with skills, local resources and possible financial assistance.
Specific types of dementia national websites:
If this is an emergency and if you have reached the end of your rope, please get help:
Caring for someone living with dementia can be a catch-22. You need a team around you, but due to the stigma surrounding the word, many people tend to pull away from friends and even family members. They don’t want the dementia to be seen because they don’t want to be thought of as less than what they were.
Instead of reaching out to others early on, many choose to close ranks and take it on themselves. Don’t do that to yourself and the person in your care. Don’t bottle things up until you hit a breaking point.
You two are on a journey, and it is vital for both of you to talk and connect with others. Try to build a team, and do it early. Explore the resources available to you, and try to learn and build your skills when you have a little time.
We know this isn’t easy, but if you lay the foundation early on, you improve your chances of avoiding caregiver burnout.
By Teepa Snow and Dan Bulgarelli
Originally published on teepasnow.com. Republished with permission.
Our organisation is inspired by and interested in learning more about dementia with Teepa Snow and the Positive Approach to Care methods. While our organisation is inspired by these methods, any knowledge or skills we offer are only representative of our organisation, independent of Positive Approach to Care.
