Once a neurologist gives a dementia diagnosis, they are not usually able to tell you much more. When talking with other families about their loved ones with a dementia diagnosis, here’s what caregivers asked most frequently:
- How do we make sure our loved one is safe and happy?
- How will we KNOW they are safe when we’re not at home?
- When should we consider moving them to assisted living or memory care
- What do we say or not say?
- How do we communicate wtih the caregiving staff, nurse and director of this new community?
So many things are new to both the person with a dementia diagnosis and their caregivers. First, don’t panic. You have time. Years. You will make many decisions. If you make a decision you don’t like, make a different decision. Avoid feeling like you are failing at caregiving. There is no training manual and every dementia journey is different.
In my experience, it’s most important for them to feel safe and loved. That means that there should be no conversations that upset them. Take those outside…and across the street, if you can.
Those with Alzheimer’s and dementia remember emotions. They may not remember what day it is or where they are, but it seems, they remember emotions – love, anger, frustration, kindness – all of the emotions.
Now let’s get to those questions.
How do we make sure our loved one is safe and happy here? How will we KNOW that?
The short answer is visit frequently and observe. If you’ve read the chapter on Care Options in It’s Not that Simple, you’ll have done quite a bit of homework that will give you peace of mind regarding your loved one’s safety and happiness. That being said, nothing makes them happier than seeing you.
When do we visit? How often?
Visit as often as you can and don’t expect them to remember that you’ve visited. That’s not why you visit. You visit to connect at the emotional level. You won’t know what mood your loved one is in when you arrive. Something could be upsetting them or they may have just woken up from a nap.
They’re no different than the rest of us except they probably won’t remember your visits because time has lost its meaning. So be compassionate and kind, flip through a magazine with them, hold their hand while listening or singing to music or go during activity time and do a project with them. Go on different days and at different times.
I used to struggle with how long I should stay. I felt guilty if I just stayed for 45 minutes or an hour. Then I realized that Mom just wanted to see me and I was the one making the “how long do I stay?” a burden on myself. The same was true for Dad. He wanted to know he wasn’t alone because he was more cognizant than Mom. He wanted to know someone loved him and was watching out for him, that he wasn’t left to strangers.
What do we say or not say?
The most important takeaway here is that the person you’ve known and loved is still INSIDE that body. They’re not purposely forgetting words or details on purpose. They’re not intentionally forgetting to take a shower or change their clothes. They just don’t remember.
That being said, they are still adults, not children. So speak to them with respect so they maintain their dignity. Yes, shorter, simpler sentences are important for communication but don’t speak down to them or about them as if they’re not present.
Share moments together. Avoid getting hung up on being right. Just be happy you’re with your loved one. When you’re not happy anymore, it’s time to leave.
How do we communicate wtih the caregiving staff, nurse and director of this new community?
If you notice something that needs attention or that you’d like to understand better, speak up. Every care community I’ve been to wants to know how to make you and your loved one happy and comfortable. Build relationships with all of the staff, from the director to the nurse to the caregivers.
For specific care, such as your loved one’s favorite blanket, tell the caregivers and nurse how important that blanket is for your loved one to feel safe. Always say Please and Thank You. Those go a long way in building the relationships. Never get upset with the care staff. They’re doing the best they can. It’s your responsibility to make sure you communicate what’s important for your loved one’s comfort, happiness and care.
For example, Mom loved holding a baby doll so my brother and sister-in-law sent a soft baby doll to her for her birthday. She took that doll everywhere. One day it went missing. I had to laugh because the caregivers turned the place upside down trying to find that baby doll. We did find it and gave it back to Mom. Why was that so important? Because Mom loved that doll and it made her happy.
Think about what makes your loved one feel secure and happy. Carrying a purse or wallet? A favorite blanket or pillow? A stuffed animal? Make sure the care staff knows what’s important to them. Also, note that these things may go missing since your loved one will be out and about the community and may leave that item behind accidentally. Avoid getting upset about this. Just enlist some help to find it or simply replace it.