Caregiver health & respite

Tiredness improves after a good night. Burnout does not — it is what happens when the demand has outrun the resources for long enough that the tank does not refill.

Signs worth taking seriously:

• You are exhausted in the morning, before anything has happened.
• You have stopped seeing people, and stopped wanting to.
• You are snapping at the person you care for, then lying awake about it.
• You have missed your own appointments and prescriptions for months.
• You are drinking more, or leaning on something to get to sleep.
• You feel nothing much any more — flat rather than sad.
• You catch yourself wishing it would be over, and then feel sick about that.
• You have stopped believing anything would help.

If several of those are true, this is not a character problem and it will not be solved by trying harder. Tell your own doctor, plainly: "I am the full-time caregiver for someone with dementia and I am not coping." That sentence gets a response.

Resentment. At the person, at the siblings who do not help, at friends with ordinary lives. Resentment is a symptom of an unsustainable load, not evidence that you love them less.

Grief, years before any death. Missing someone who is in the next room. This has a name — anticipatory grief — and it is one of the hardest parts of dementia caregiving specifically.

Guilt about everything. Guilt for losing your temper, for wanting a day off, for considering a care home, for feeling relief. Guilt is the standard background noise of this job. It is not a reliable guide to whether you are doing well.

Wishing it were over. Nearly everyone has this thought at some point. It is not a wish for someone's death; it is a wish for the suffering to stop — theirs and yours.

Invisibility. All the attention goes to the patient. Nobody asks how you are, and when they do, they want a short answer. Support groups exist largely to fix this one.

Respite means someone else takes over so you can stop. A few hours, a day, a week. It is the most consistently recommended thing in caregiving and the most consistently skipped.

The forms it takes:

• Adult day programmes — the person goes somewhere for the day, with activities and other people. Usually the best value and often the best for them too.
• In-home respite — a paid aide or a trained volunteer comes to you.
• Short-stay residential respite — a care home takes the person for a few days or a week, often used for holidays, surgery or emergencies.
• Informal respite — family and friends, rostered properly rather than left vague.

Where to start:

• Your Area Agency on Aging — it knows what exists in your county and what is subsidised. The help page explains how to reach yours.
• Alzheimer's Association, 800.272.3900 — local chapters, support groups, and care consultations.
• Ask the clinic whether the person's care is part of a dementia care programme — Medicare's GUIDE model, for instance, includes a respite benefit for eligible patients. The figures below are from our data.
• Check veterans' benefits if they served. The VA has some of the better respite provision available.

Does it actually help? What the studies on respite found, and where the evidence is thin.

Caregiving expands to fill everything you let it have. People emerge after seven or eight years having lost the job, the friends, the hobby and the sense of being a person with a life.

So pick one thing — one — and defend it like an appointment you cannot miss.

• The choir. The Thursday swim. The allotment. The book group.
• One friend you see, in person, every month.
• One hour on a Sunday that is not about anybody else.

It does not matter what it is. It matters that it is yours, that it is regular, and that it is not negotiable. One protected thing is far more sustainable than an ambitious self-care plan you abandon in a fortnight.

Two more that are worth the effort:

• Keep your own medical care going. The check-up, the dentist, the prescriptions, the screening you are overdue for. Book them now, while you are reading this.
• Say yes when someone offers help, and give them a specific job. "Could you sit with her Tuesday afternoons?" gets a yes. "Let me know if you need anything" never converts into anything.

• A support group. The most common feedback is relief at hearing other people describe your exact week. Online groups count, and they work at 11pm.
• Lower the standard on purpose. Fewer baths. Simpler meals. Paper plates in a bad week. Decide what you are letting go of, deliberately, rather than failing at it.
• Write things down. Behaviour patterns, questions for the doctor, what worked. Your memory is under load too.
• Get your own therapist if you can. Caregiver-specific counselling has better trial evidence behind it than most things in this field.
• Sort the money and the legal paperwork early — uncertainty about it is a constant, low-grade drain. See planning.
• Protect your sleep where you can. If the nights are broken every night, that is a reason to bring in overnight help, not a thing to endure indefinitely.