I travel all over the country to help people take care of loved ones and clients with dementia. No matter who I talk to or what role they have, whether professional or family caregiving, it seems that everybody shares similar hopes, fears, questions, and concerns.
Here are a few things I often say to caregivers to help them with their journey:
We offer many resources to help you ensure the quality care that your loved one deserves. I especially recommend our Life Story Questionnaire [PDF]. Fill it out and share it with everyone who cares for your loved one so they all have the personalized information they need to engage your loved one’s likes and interests.
I hope you find this information helpful and comforting. You’re giving a lot, and it’s important that you get support and reassurance for all you do.
As always, I encourage you to share your thoughts in the Comments section below, or on our Facebook page. And if there’s another article or resource that has made things easier for you, please let us know so we can share it with others. Also be sure to sign the pledge to help us create a Dementia Capable Society!
Please make time to take care of yourself.
Supporting someone with Alzheimer’s/dementia is very challenging. You must give yourself permission to take time away to keep yourself healthy. This often means asking for help from friends and family, or hiring care services so you can have time for you on a regular basis. Don’t feel guilty about this—it’s necessary! Remember what the flight attendant says: “Put on your own mask first before helping someone else put on theirs.”
It's sometimes easier to understand “disability” when you can see the cause.
We can’t see the changes happening in your loved one’s brain. This sometimes makes it more challenging to understand and accept the changes in your loved one's behavior or function. But there is a real cause for these symptoms, and it’s not something your loved one with dementia is doing on purpose or can fix. It's the disease.
Your loved one is doing the best they can with the abilities they have remaining.
Work as a team to create the just-right level of challenge so your loved one is neither overwhelmed nor under-engaged.
It's not uncommon for the person with dementia to have emotional distress.
This includes feelings of fear, loss of control, anxiety, and depression. Yet this emotional state can improve if we can work together to find and fix the root cause of these feelings.
When someone has dementia, their “filter” can break.
What comes to mind might come out! This can create uncomfortable social situations, but keep in mind that your loved one is doing their best and doesn’t realize or understand the implications of what they're saying.
Each person with dementia has many remaining abilities.
It’s helpful to create situations in which your loved one can use those abilities to remain productive and to retain feelings of self-worth.
Being part of the journey as your loved one progresses through the stages of dementia often means that you as the caregiver will go through the stages of grief.
It’s helpful to understand this and to seek support along the way. This will help you get to the stage of “acceptance” in as healthy a state as possible. It will also help you understand and accept why you have certain feelings (such as anger) along the journey. Often these feelings are very normal and you're doing the best you can.
It’s not helpful for you or your loved one with dementia to focus on what the person used to be able to do.
It’s essential to identify what your loved one can do today, and to help the person use those abilities. At the same time, it’s important that you understand and support what the person can no longer do. For example, reasoning with someone with dementia or expecting the person to make good decisions may no longer be possible. It will only cause stress for you both if you hold these expectations.
If you can focus on the moment, and make each moment as joyous and peaceful as possible, you and your loved one will be better off.
But this is not easy, and it often requires emotional support. Don’t go through this journey alone. Find support groups and other resources through your local Alzheimer’s Association.
There will likely come a time when the best decision is to move your loved one into a specialized memory care facility.
I hope any feelings of guilt about this decision are alleviated quickly, as a high-quality specialized memory care facility can be the best thing for your loved one and for you. Be prepared for a rough start, as those with dementia often experience some “transfer trauma” in the beginning, as it’s hard to adjust to the change. But within a few weeks, in a facility with excellent care, this phase often passes and many benefits arise for all.