Caring for yourself as a dementia carer

Adult children often juggle work, their own kids and a parent with dementia. You may grieve the parent you could once lean on while making decisions for them. That role reversal is exhausting.

What can help

• Name it: “I’m caring for a parent and it’s a lot.”
• Share tasks with siblings in writing
• Use adult day programs or in-home help so you can work
• Ask your employer about flexible hours or family leave

The Recovering from burnout guide covers recovery in depth, and Caregiver stress & burnout covers family leave.

Common guilty thoughts include “I must visit every day,” feeling bad for still enjoying life, or feeling you failed if care at home is no longer possible. Some carers feel guilty for wishing it was over.

Things to say to yourself

• “I’m doing the best I can.”
• “This would be hard for anyone.”
• “I can’t control everything that happens.”
• “Even when I do everything right, the illness will still cause hard days.”

It is normal to feel frustrated with the person, resent the demands of care, or feel abandoned by relatives who don’t help. You can feel love and anger at the same time.

Feeling angry is normal. Acting it out on the person or yourself is not okay. Talk to a counsellor or another caregiver before the anger takes over.

• A short break every day, even 10 minutes
• Time with friends, and a hobby that’s yours
• Exercise, good food and your own check-ups
• A caregiver support group, in person or online
• Faith or a sense of something larger, if that helps you

Counsellors and social workers can help with hard feelings. Medicare, Medicaid and some private insurance may cover some of the cost.

Many caregivers go through depression, which is different from everyday stress. It can come soon after a diagnosis, or later as the person declines.

Signs worth talking about (not a diagnosis)

• Feeling hopeless, worthless or very guilty
• Losing interest in things you used to enjoy
• Sleep problems or very low energy
• Aches, headaches or stomach problems that don’t go away

• Book your own check-ups, dental and eye visits, and keep them
• Tell your doctor you are a caregiver
• Ask someone to cover care so you can go

Many spouse carers are older too: about 30% of dementia caregivers are 65 or older.

If you are up at night with the person, ask family, friends or a respite service to cover some nights. The Dementia: changes in behaviour guide has ideas for calmer nights.

• A short walk or some exercise most days
• Regular meals, even simple ones
• Relaxation, such as slow breathing, meditation or gentle yoga
• Writing in a journal about good and hard feelings

Keep in touch with friends, even briefly. Accept help when it is offered, and ask for it when you need it.

You may grieve at the diagnosis, when they stop driving, when they move into care, and when they no longer know your name. Feeling loss more than once is a normal part of dementia grief.

Small losses people often grieve

• Inside jokes and shared memories
• Being able to ask their advice
• Plans you made for retirement or the future
• Being called by your name

Memory can come and go, so the person may seem like themselves one moment and a stranger the next. This roller coaster is one of the most stressful parts of dementia care.

It can be heartbreaking when a parent or partner doesn’t know who you are. It is caused by the illness, not by any change in how much they matter to you, or you to them.

Things that may help

• Introduce yourself warmly without testing them: “Hi Dad, it’s Sam.”
• Join their world rather than correcting it
• Remember that warmth, touch and familiar voices can still comfort

Many people think grief only happens after someone dies. They may not realise you can grieve deeply for someone who is still alive. Support groups for dementia carers can be a place where you don’t have to explain.

When the person does die, carers often feel sadness, relief, loss of purpose and guilt all at once. These are normal. The “Grief: understanding loss” guide can help then too.

Adult day centres offer activities like music and exercise in a safe place. Many provide meals and transport, and some are open 7 to 10 hours a day, which helps carers who work. Adult day care usually costs less than in-home or nursing home care.

Questions to ask

• Are staff trained in dementia care?
• How do you handle wandering, toileting and upset?
• Are people with dementia included in activities?
• What are the hours, fees and transport options?
• How do you handle emergencies?

Home care aides help with bathing, dressing, meals and company. Home health care is medical care ordered by a doctor. Check references and complaints before hiring.

Some care communities offer stays of a few nights or weeks. Regular short stays can help the person get used to a new place. For someone in hospice, Medicare covers most of the cost of up to five days of respite in a row.

• Try respite providers before you need them in an emergency
• Agree who would step in if you were suddenly ill
• Keep a notebook with contacts, routines, behaviours and what helps

The Alzheimer’s Association runs free support groups led by trained facilitators, in person and online. Some are just for adult children, spouses or younger carers.

Support groups can also be a place to grieve the losses others may not see.

ALZConnected is the Alzheimer’s Association’s free online community and message board, where caregivers, family and friends ask questions and share advice.

Counsellors and social workers can help with guilt, anger, grief and stress. Medicare, Medicaid and some private insurance may cover some of the cost. It can take a few tries to find someone you feel comfortable with.

Faith, prayer or a sense of something larger can be a real source of strength for some caregivers. A faith community can also offer company, meals and rides.

Free and confidential, day or night, in more than 200 languages. Staff help with caregiver stress, respite and care options. Callers who are deaf or hard of hearing can use 711 relay.

Offers fact sheets in several languages and helps caregivers find services in their state.

A free U.S. government service that connects you to your local Area Agency on Aging for respite, adult day care and in-home help.