Caregiving is tough, and when you are watching your loved one decline from a terminal illness, dementia, or another illness, you experience anticipatory and ambiguous grief that can overwhelm you. Join us for a candid conversation with Dr. Valencia Montgomery regarding caregiving, grief, and how to navigate this difficult season in your life. Here's a preview of the interview below.
This post is modified from transcripts of Dr. Valencia Montgomery’s interview, airing July 6, 2022, on Youtube and our Podcast channels.
Can you describe the grief that we feel when we realize our loved one has a form of dementia and is starting to lose their memory?
Initially, when this first starts to happen, people think it's just normal aging. And so they go through that process of denial. This is, this is probably not anything serious. Then there's the adjustment to having the person physically present, but cognitively they're no longer the same person.
When this takes place with our parents, this is especially difficult because we always look to our parents as our rock or our stability in life. And as we see them slowly slipping away, you have all kinds of emotions, which everyone processes differently. Sometimes people become angry and they take that anger out on that loved one, or other emotions start to rise to the surface.
The grief extends beyond just the knowledge that that person is lost. You're losing them permanently at some point, but it's that long process. It's almost like a long kiss goodnight and you are experiencing every loss every time they lose a new memory, forget a new name of a close family member, or forget how to brush their teeth. So it's literally us watching a reversal of what you know you've experienced.
What do you advise people to do when they realize their loved one is losing their memory?
One of the things that I love to encourage families to do in the earlier stages is to create time and space to learn more about the lived experiences of their parents or loved ones. So many times with our parents, we only think of them in the context of their role as a parent, but we never learn about what they dreamed about when they were younger. For example, we don't learn necessarily about all the music they listen to back in the day, and research shows that music is one of the last pieces of our memory that we lose. One great way to extend that relationship is by listening to the music and learning the music that your loved one dance to because as the stages of memory loss progress, that's still going to be a way for you to connect.
Another way to spend your time with your loved ones is to ask them questions, such as “what was life like growing up?” “What kind of hobbies did you enjoy?” Try to learn new things about your parents.
The next thing I encourage you to do is learn as much as you can about whatever dementia diagnosis they have. So whether that's an Alzheimer's disease or frontal temporal dementia, you want to understand the process and progression of that disease so you know what to expect along the way. This can help prevent you from being upset or surprised.
What are some things to keep in mind when you get frustrated that you have to continue to repeat yourself to your loved one who has Alzheimer's or dementia?
Ask yourself, why is it so important for your loved one to remember everything? If they don't remember what you said or what just took place, it's okay. It shouldn't be a, “oh, I can't believe you don't remember this.” Instead, look at it this way…you will always have those memories, even if they don’t.
How do you respond to a loved one who is being stubborn when you are trying to care for them?
Sometimes people with dementia simply don't understand why they need to do things, so they are resistant. But if you break things down to them as to why you are asking them to do something, and the consequences if they don’t, then they might be more open to what you are asking them to do.
Also, it is also important that we don’t treat them like children, by telling them “you are not doing this or that.” It's when we take choices away from them that they become so much more resistant. They are still adults, so you want to help them feel as independent as possible by giving them choices.
For example, if you don’t want your loved one to drive anymore, you might approach them by giving them the following three choices.
So you may either give me the keys to the car.
You may sell your car.
You can disable your car so that it no longer drives anymore.
In this example, the one option that is not included is driving, due to the safety risk. If your loved one is not able to make a choice at that point, then you tell them that you will then make a decision regarding the next steps based on what you believe is best for them.
What do you do when you feel bad for getting angry or acting mean towards your loved one?
First, you really want to reflect on the reason why you responded that way. Were you upset because of fear of losing your loved one, or were you just exhausted or overwhelmed? Why did you react that way? Identify what was the reason behind your reaction.
Then if the person is still alive, I encourage you to go back and have a conversation with them. Say something like, “Hey, the other day when this happened, I realized that I did not handle it well.” Be honest with them.
Also, remember that you are never gonna be a hundred percent perfect. You are entitled to have feelings that are negative. You are entitled to have those feelings that allow you to release tension. Even if you have responded in a way that is not good, as long as you are aware of your heart's intention, you have to forgive yourself and remember that you haven’t caused any damage to your loved one. The moments that love was exchanged with them is what they will remember.
What do you do when you are caretaking for a loved one, and you realize you don’t have the capacity to care for them like you need to anymore?
So although we know that we have an imperfect healthcare system, including nursing homes, you cannot be superwoman or superman. Also, if you're working full time and you have a family, you cannot neglect those responsibilities because you're trying to take care of this person that you love so much.
If you have a family system set up where people can take care of this person in rotations, and you can get a break sometimes, try to do that as long as possible. But sometimes the people in your life need specialized care. Don’t feel guilty about acknowledging that you don’t have the capacity to offer them the care that they need. Sometimes the greatest act of love you can show them is acknowledging your limitations so you can place them in an environment where they can get the support that they need.
If you do make the decision to place them in a nursing home, it is very important that you are constantly visiting them. When the care team at the nursing home knows that you are checking on your loved one regularly, they will make it a point to remain on top of their care because they know that someone is watching them.
The benefit of placing your loved one in a nursing home is now you can put all of your attention towards creating beautiful memories with your loved one, versus completely being overwhelmed with the task of caretaking.
Let your loved ones enjoy whatever they want to do, watch movies with them, and play games. You also get to check your loved one out of the nursing home too, so you have the opportunity to still spend quality time together. I just encourage you to be intentional about spending quality time with your loved one.
How helpful do you think counseling plays in someone’s role as a caretaker?
I am a big advocate for you going to counseling. I went through counseling while I was a caregiver because all the other life issues still go on while you are in this role, so it is important for you to take time out for yourself.
When you connect with a counselor, they can help you learn some adaptive coping skills so you can address those issues that come up for you. In addition, groups can be an extremely effective way to get support and learn what other people who have gone through the same experience as you have done to navigate this difficult season.