Life after diagnosis
[From the Shared Experiences: Suggestions for those with Alzheimer Disease booklet and audiotape by the Alzheimer Society of Canada. To get a copy, contact your local Alzheimer Society.]
For some people, a diagnosis of dementia is a shock. For others, there may be an initial sense of relief at finally being able to put a name to their symptoms. Whatever your immediate response to the diagnosis, over time, you will find yourself experiencing a variety of emotions.
Some common reactions and feelings
We asked some people about their reactions and feelings about living with Alzheimer's disease. Here are some of their comments:
Denial: "Sometimes I think they made a mistake, I don't have Alzheimer's disease. I'm still functioning."
Anger: "It angers me that I can't pull myself up."
Anxiety: "I'm scared about losing my abilities."
Guilt: "I feel guilty, like a dead weight around my husband's neck."
Frustration: "I start talking to people, then I forget what I'm talking about; it blocks me."
Hurt: "If I make a mistake, don't correct me. That hurts."
Humour: "I have to laugh. That's therapy. If I didn't laugh, I would cry."
Sadness: "I feel the end of something."
Depression: "It's all black."
Loneliness: "You are not in the circle but on the outside."
Acceptance: "I take it as it comes at this stage of the game."
Hope: "You have to fight. Hang on. One of these days they will find a cure."
It can be especially helpful to meet with other people who have the disease. Together, you can share your feelings and experiences, and offer each other social and emotional support.
Contact your local Alzheimer Society to see if there is an early-stage Alzheimer's disease support group in your area. Another option may be to have the Society put you in touch with someone who can provide one-on-one support.
Hearing bad news
We can think of the reaction to hearing bad news as having five phases. These phases can be experienced and re-experienced in any order. There are no time limits to the range of reactions and emotions that people go through when receiving catastrophic news.
1. Shock and numbness
A diagnosis of dementia can come as a shock, even if you have been half expecting it.
2. Disbelief and denial
"This can’t be happening to me/us!” “It isn’t as bad as the doctors say.” In the beginning, denial can be a positive force. We use denial to shield ourselves from news too painful to bear, as we adjust inwardly to our new reality.
3. "A ‘hurricane’ or a ‘roller-coaster ride’ of uncomfortable feelings of anger and frustration; a trajectory through emotional devastation”
It takes time to sort through the many reactions and emotions, including frustration and anger at the situation, at the disease, at others and even at oneself. However, some people experience a sense of relief to know there is a medical reason behind the changes they have noticed in their thoughts and actions.
4. Despondency and sadness
Everyone will experience periods of feeling:
- Helpless and powerless in the face of the implications of the diagnosis: confronting their own limitations.
- Intensely sad when considering all the losses this disease has caused and may cause as time goes on: the healthy, happy years that are past and the lost years of the future.
- Worried and fearful: “What’s going to happen next?
Accepting the problem rather than avoiding it, and then realizing that the situation must be adjusted to, rather than actively changed. Acceptance will involve recognizing and becoming reconciled to the limits of one’s body.
A degree of denial is essential. Like somebody drinking hot coffee, we sip the truth of our condition carefully and gently.
--J. W. Anthony
Some suggestions for coping with your emotions
When we asked some people how they coped with their emotions, here is what they said:
- "Acknowledge it."
- "Take one day at a time."
- "Join a support group. The more you speak, you get a load off your chest."
- "Be with people you can laugh with."
- "Go for a walk with someone."
- "Don't be shy. Ask for help."
- "Tell people if they hurt your feelings."
- "Animals are good for people. Animals are calming."
- "Don't stay enclosed, isolated. Get out."
- "Never give up hope. Living is worth it."
Dealing with depression
Considering the many changes associated with Alzheimer's disease, it is understandable that you may feel sad or unhappy.
- Don't carry the burden alone. Talk to people who can help you deal with your feelings.
- Try some activities that can help take your mind off your worries. This could be playing your favourite music, gardening, taking a walk, caring for pets, or anything else that helps you feel better. These activities can have a beneficial effect.
If the feelings of sadness and hopelessness become overwhelming, make an appointment to see your doctor. Professional counselling may be recommended or medication may be considered.
Last Updated: 01/23/12