When someone you care about is diagnosed as suffering dementia it is very common, and extremely normal, to experience your own feelings of loss and grief as their life, and yours, is changed by this condition. For most people the changes happen gradually so there is time to adjust but it is important to acknowledge those feelings and deal with them as best you can in order to look after yourself and your loved one.
Dementia is progressive and means that over time the person with dementia will experience changes in how they communicate, remember, think and manage day-to-day tasks. It is not possible to say exactly how long a person will live with dementia or how their dementia will progress.
Feelings of overwhelm
As a family member you may feel worried, anxious, resentful and overwhelmed. It’s helpful to remember that the person with dementia can experience these feelings too as their abilities change and they adjust to their diagnosis.
Some of the changes caused by this condition involve loss of independence for the person with dementia. Family members may have to take on new tasks such as paying bills, legal paperwork etc. This may feel overwhelming.
Grief has stages
As an emotion, grief has layers and stages. When dealing with a dementia diagnosis the anticipation of the future loss of the person you love is one stage of the grief, known as Anticipatory Grief. Dealing with the loss once the person is emotionally and psychologically absent is another stage, known as Ambiguous Loss. Both types of grieving can be difficult for you and others to recognise and acknowledge.
Adjusting to Grief
Adjusting to the changes that dementia brings is a process that can affect us emotionally, mentally, physically, and spiritually. Sometimes we can feel that we are managing well and at other times we can be surprised by strong emotions such as anger, guilt, frustration and resentment. This process is similar to grieving, except that the person is still with you.
What can help
- Accept those feelings, and be as sad as you want. Anger and frustration can be healthy emotions. Bottling them up will not help you work past them.
- Know it is common to feel conflicting emotions. It’s okay to feel love and anger at the same time.
- Prepare to experience feelings of loss more than once. As dementia progresses, it is common to go through feelings of grief and loss again. Accept and acknowledge your feelings. They are a normal part of the grieving process.
- Talk to someone you trust about your feelings. This can be a good friend, another family living with dementia, an understanding professional, or supportive members of your family.
- Relieve tension. This can be through crying, punching a cushion or a pillow. Just make sure you do it well away from the person with dementia as witnessing this may distress them. Do something fun, get some exercise and importantly, treat yourself regularly.
- Understand that people may not understand your grief. Most people think grief happens when someone dies. They may not know that it’s possible to grieve deeply for someone who has a progressive cognitive illness.
- Combat feelings of isolation and loneliness. Caregivers often give up enjoyable activities and companionship. Arrange to meet with friends to do something enjoyable. Taking a break may help you relieve stress and grief and strengthen your support network.
- Stay involved in enjoyable activities. Invite friends to drop in for a chat or to phone you regularly.
Adjusting to a move into residential care
Not every person with dementia moves into residential care, but many do. This can be one of the most difficult transitions for everyone involved. As a family member you may grieve another change in your relationship. Feelings of loss and grief can be mixed up with guilt and relief, which can last for a surprisingly long time. It can take time for the person with dementia to settle into their new environment. It can take time for you to adjust too, particularly if you were their carer. You may miss the person’s presence. You may experience emptiness. You may miss your role as a Carer. You may feel very tired, both physically and emotionally. You may be relieved that the day-to-day responsibility of caring is no longer there and you may want to continue to be involved, but in a different way.
- If you still want to be involved in caring for your relative, speak to the staff and explain exactly what you would like to continue to do. Ask them for suggestions on how you can help.
- If your daily routine previously revolved around caring for your relative, creating a structure to your day may help you get through the difficult early months. Pick interests and hobbies that you enjoy and reach out to friends you enjoy spending time with.
- Visiting your loved one with dementia in their new home is important and can be one part of your new routine. You will gradually build a life for yourself that includes visits and you will work out the frequency and length of visits that works for you.
- Remember that there is no ‘right’ or ‘wrong’ way to feel. You experience your own feelings in your own way, and no one has the right to tell you how you should feel.
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