Who Cares for the Carers? Alzheimer's Disease affects the Whole Family

Grief, Loss and Challenges for Carers of those with Alzheimer's Disease

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Alzheimer’s disease is challenging for families and carers; caring for a loved one with the disease can be very lonely.

Many carers experience grief and loss - and the ongoing realities of living with Alzheimer's are unique and can make you feel isolated.

According to the Alzheimer’s Association, 6.5 million Americans aged 65 and older experience Alzheimer’s dementia.

That’s a lot of lonely, struggling people.

Day to Day

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Behavioral and personality alterations in the ones we love can be really difficult to cope with.

If a relative starts to experience hallucinations, wanders off, or begins to struggle with sleeping or eating, that can take a real toll on family carers.

When your loved one wakes up in the middle of the night disorientated and afraid, that means both of you lose a good night's rest - but one of you has to get up and care for the other in the morning.

Family Impacts

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As the family struggles to adjust to their loved one’s illness, this often triggers conflict in relationships, roles and experiences.

Hard conversations must be had around finances and sharing obligations which can cause clashes and hurt feelings.

And some have to make those decisions alone, without support.

Denial

Because it's overwhelming and distressing to accept an Alzheimer's diagnosis, many carers experience denial to begin with.

It's common for carers to:

• Argue with and disbelieve the diagnosis.
• Minimize problematic behaviors.
• Attempt to ignore obvious challenges.
• Hope their loved one will just get better.

But time goes on, the disease progresses and eventually it can no longer be ignored.

Some carers feel:

• Abandoned and lonely.
• Let down and resentful towards other family members who can't or won't provide care.
• Frustrated and resentful towards the person with Alzheimer's disease.

Guilt - a common reaction

It's very normal for carers to also feel guilt for many reasons:

• They feel guilty about feeling irritation towards their loved one.
• They feel guilty asking for a break and shame for accepting help.
• They look back and wish they had been kinder before the diagnosis.
• They compare themselves to others and feel they're not doing enough.

Who Cares for the Grieving Caregivers?

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But while grieving and trying to adjust, they still have to manage a lot of difficult tasks, some of which they may need to be trained and supported to carry out.

And the grief that caregivers feel is ongoing. They mourn for the loss of shared memories, dreams, hopes, plans and experiences. They often feel the one they love is being taken away from them.

And for those who had a complicated relationship with the person before their diagnosis, it can be a very confusing time to have to care for a person they may already feel resentful or ambivalent about.

Treat yourself more kindly

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We usually demand more of ourselves than we would from others. Try to accept that it's normal to need support - speak to yourself as you would speak to a neighbor or friend.

Try to be a little kinder to yourself.

• Don't give up on all your normal activities. Make the time to see friends who will ground you and give you a break from your day-to-day worries.
• Feel your feelings - it's ok to feel all of them, the good and the bad. You're human.
• Being lonely is normal, but you don't have to do it all alone. There is support available.
• You probably won't feel the stages of grief in a linear progression, you will feel differently every day, and that's ok.
• Remember that not everyone will understand what you're going through, and look for groups where you can share and normalize your experiences.

Every family and every person is unique – but we all share the need to find purpose, meaning and joy, no matter what challenges we are facing.

Please ensure you’re receiving the support you need.

And remember that, for the best possible outcome, you must care for the caregiver too.

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Disclaimer - please always consult your own healthcare professionals and conduct due diligence before making any changes to your circumstances.