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Grief & Loss

Living With Alzheimer's >> What They're Feeling | 04.24.15

Grief and loss: dealing with news you never wanted to hear

A diagnosis of dementia is a life-changing event, both for the person with the condition and their caregivers. It is the beginning of a “long goodbye”, marked by intense feelings of grief and loss for all involved. By facing these emotions and preparing together for what’s to come, it’s possible to approach the future with a measure of comfort.

Plan while you can

A core team of family and friends can help create a network of support as you move into the realities of living with dementia. This is the time to sit down with the person with dementia and discuss important decisions that will have to be made in the coming months and years. Before the person reaches later stages when they are unable to communicate, you should develop plans for such issues as legal matters, financial concerns and end-of-life planning.

This is difficult, but necessary. Going through this stage together helps assure that everyone is given a chance to share their emotions and lean on one another for solace.

Seek emotional support

The life of the caregiver can be a lonely one. Try to seek out family, friends and others in similar situations to provide the emotional support you need to keep your grief from becoming debilitating.

Professional counseling may provide help as well if you begin to feel overwhelmed. Counselors are also available to help the person with dementia cope with their feelings of loss. Your physician can advise you on finding a trained professional counselor.

Feelings surrounding moving a loved one into a care facility

Moving a person with dementia into a nursing home or other permanent facility can bring on feelings of grief, loss, guilt and anger in a caregiver. They may feel they have failed in their role and abandoned their loved one to the care of strangers. They all may also feel relief — and guilt about feeling that relief.

These are normal reactions to a stressful decision. Caregivers should remind themselves that this is for the best. A facility can provide the kind of around-the-clock attention that no one person can handle on their own. And the caregiver’s own health and well-being is also a factor to weigh in the decision.

By visiting your loved one and keeping the nursing staff apprised of any concerns, you’re still fulfilling an important caregiver role. Don’t be afraid to trust others who are now involved in the care of your loved one.

When your loved one no longer recognizes you

One of the most difficult aspects of dementia may occur in later stages when a person you may have known your entire life no longer knows who you are. They may treat you as a complete stranger. Or they may not even be aware of your presence.

This is a loss that is emotionally wrenching. Your loved one is still alive, but their connection to you seems to be irreparably severed in a fundamental way. Always remember, however: deep inside the person you care for is still there. They still need your love and support, even if they can’t seem to return those feelings in the ways you are used to.

Be sure to share your feelings of grief and loss with people close to you — or with a professional counselor. Their support can help give you the strength to endure until you face a final goodbye.

The death of a loved one

Conditions such as Alzheimer’s are fatal. There is only one outcome that can occur after the long months of caregiving.

When death does occur, you may find you have already said goodbye countless times. That doesn’t make the finality of a person’s loss any easier to accept. How you choose to grieve is a personal thing. But regardless of the form your grief takes, it is important that you give it time to run its course.

Like all things, your grief will pass. Hopefully, it will be replaced by memories of a life that was full and joyous. Sharing these memories with others is an important part of coming back from a place of loss.

If you find yourself overwhelmed by feelings of sadness that impact your life going forward, you may ask your doctor about professional grief counseling. Professional help is essential if you find yourself experiencing depression, social isolation, addictive behaviors, suicidal thoughts or other debilitating lifestyle changes.

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