Dear Dementia Diary,
Breathe! I mean really breathe and start getting really good at it. There will be many instances, while living with dementia, when you will need this tool from your toolbox. Not just for you, but, also, for the person living with this disease. Try deep breathing right into your belly (also known as a yoga breath). Just three deep breathes can change your stress levels and clear your mind. When we are placed into a stressful situation, a chemical in our bodies called cortisol is triggered. It’s our alarm system and it works with our brains to control mood, motivation, and fear. It is the fuel for our “fight or flight” instinct. As helpful as cortisol can be in those moments, it can be harmful if we continue to stay in this heightened state. Cortisol is not your friend if it is flooding your system. It can cause rapid weight gain (especially in our mid-section), memory and concentration problems, and trouble sleeping. Maintaining healthy levels of this hormone will be very important. You can do this by eating well, exercising, getting enough sleep, going outside, laughing (it’s free), and, of course, deep breathing, yoga or meditation.
If you are feeling stressed, the person with dementia will pick up on this emotion far before they pick up on any words you speak or actions you request. If you begin to breathe deeply, the person with dementia will begin to breathe deeper, creating a calmer situation for all. If you take those three deep breaths before asking for an action, your vocal tone and body language will reflect this, as well, because with dementia approach is everything! Think about how many times you have bellowed an order such as, “can you just pick up after yourself”. How far did that get you?
Grieve. I mean really grieve and get really good at it. The same physical outcomes, that we experience when we are feeling stressed, can occur when it comes to grief. If we have just suffered a loss, it will show on our face and people with dementia will pick up on this emotion as well. Grieve. It’s part of human nature and it is an important part of living with dementia. There are five stages of grief. Get acquainted with these stages as you will need to be aware of all of them. During the disease process, you will be faced with many losses and it will be very sad. Research is telling us that with some forms of dementia, a person can live, with the disease, from 6-12 years. Dementia gradually takes away parts of your parent, partner or friend. As each loss occurs, you will need to mourn and may experience the different phases of grieving: denial, anger, guilt, sadness and, then, finally acceptance. The stages of grief don’t necessarily happen in order. You may move in and out of the different stages as time goes on. I see the first stage, denial, more than any other stage. Denial is our comfort zone. Why would we want to come out from there? It feels safe. We may think that the person is not really ill; that the doctor has just gotten it wrong; that our parent, partner or friend is just having a bad day and tomorrow will be different. When we attempt to normalize the symptoms of dementia, we rob ourselves and the person experiencing the disease the opportunities that are important when faced with a diagnosis or getting a diagnosis.
Getting families on the same page, during this process, is key to living well throughout the disease. Caring for someone with dementia can lead to anger and resentment of the demands of the caregiving role and of the family members who cannot or will not help. No one signed up for this and it can be frustrating for everyone involved. You may experience guilt for having negative thoughts about the person as you care for them and feel regret for things about your relationship before the diagnosis. Placing unrealistic expectations of yourself or others by rehashing the “would’ve, could’ve or should haves” is not helpful. You will experience sadness. This is a sad time in your life. It’s okay to feel sad. You may feel like withdrawing from social events and family gatherings or you might just need a good cry. Acceptance comes when you find living in the moment is more precious than you could have imagined. Acceptance is being able to find meaning in your caregiving role, understand how grieving will affect your outcomes and interactions and, maybe, when you are having a laugh or two. The benefits of learning both breathing and grieving are important in your very first steps of living with dementia. Tuck them in your toolbox.