How to Cope with Grief and Loss When You Love Someone with Dementia

Welcome back Careblazer!

Today I want to talk about the stress and grief that comes along with loving someone with dementia and talk about some things you can do to help grieve and cope with each new loss. 

If you would rather watch my video on this topic, click here. 

I recently read a book called Loving Someone who has Dementia and I thought it was a thoughtful and heartfelt account of what it’s like to love someone with dementia. It had many examples of caregivers sharing their experiences and what they did to help cope every time their loved one seemed to take another step further down the dementia disease cycle. 

One of the things that really stood out to me was the idea of how when someone dies, there is usually some type of ceremony like a funeral. People come together. They offer condolences. They bring food, check in, ask how they can help. 

Yet, loving someone with dementia is like a long, drawn out death process. You slowly watch the person you love drift away in front of your eyes. And instead of people coming together, offering support, bringing food, checking in, it seems to have the opposite effect in many situations. It tends to push people away. People stop coming around. This can leave you feeling alone and frustrated. It’s like an ongoing, continuous cycle of saying goodbye. First you say goodbye to the retirement dreams of traveling. Then you say goodbye to the ability to have intellectual stimulating conversations, then you say good bye to the ability to enjoy a meal, to leave the house. It’s loss after loss. 

The author of this book has named this type off thing ambiguous loss. It’s a type of loss that has no closure. There is no solution. It’s not like someone was alive and doing fine one moment and then died in a car accident the next. It’s a long drawn out process. 

I want to share with you a couple of takeaways to help you as you grieve the loss of your LOWD. And if you want to read the book yourself, you can find it here.

1st- Get comfortable with ambiguity.

It’s the idea that someone can be here and gone. That your spouse isn’t who you married, but still someone you will love and care for. Basically, it means having 2 opposing views at the same time. It’s knowing your parent is alive and here, yet also knowing they are gone. There will be days you are grateful to have your loved one and there will be days you wish the struggle would end. It’s messy. But it’s normal. 

It’s living in the middle ground. 

2nd- Grieve along the way. 

You can’t fight back your tears for decades waiting for when they finally pass to allow yourself to feel sad. Your loved one is declining for years and it’s okay to grieve along the way during those years. It doesn’t mean that you stay sad and somber the whole time- remember, tip 1- we are living in the middle. But it does mean that you allow yourself to grieve with each new loss. The author of the book talks about having a special way to honor the loss. To recognize it as the next stage of decline. For example, one caregiver in the book would light a candle at church each time her spouse suffered another significant loss of ability. Another caregiver wrote in a journal, another gathered with family to mark the occasion. 

How can you develop a ritual that allows you to grieve and honor the losses that come along the way? There is no wrong or right answer here. Everyone grieves in their own way. Think of a way you may like to incorporate into your life. Perhaps buying a bouquet of flowers, Saying a prayer, lighting a candle, looking through a photo album, writing a letter to yourself, taking a hike, be creative. The important thing is that it is meaningful to you. You can do this alone or involve others. 

3rd- Accept what is

One of the things in the book that really stood out was you can grieve more easily when you don’t try so hard to “get over it.: There is no neat closure. No clear “ending.” You can still choose to love a shell of a person if you choose to. It’s getting to this place of acceptance of what is happening. Knowing it’s not going to get better and you don’t have to hide, ignore, or complete try to forget what’s happening with your loved one. It’s okay that it’s messy and hard. It’s okay that you have conflicting emotions. And it always help to have meaning behind what you are doing. 

If you missed my video on dementia care and knowing your reasons- you can click here to watch. You want to remind yourself of your reasons or meaning every time it gets really hard. 

So Careblazer, I hope this helps. Get comfortable with ambiguity- what I like to call the “messy middle,” grieve along the way,  and accept what is. 

What ritual will you start to help grieve along the way? I want to hear about it in the comments below. 

I’ll be back next week. In the meantime, keep up the great work.