Arthritis and mobility: what to write down about the house and the week

Walk the house and write observations, not verdicts

Take a notepad, a tape measure and a phone camera, and go room by room. You are recording what is there, not deciding what should change. Deciding is the occupational therapist's job, and they will do it far faster if you arrive with a written list and photographs.

Follow the route through an ordinary day: bed to bathroom, bathroom to kitchen, kitchen to the chair, chair to the front door. Note every step, threshold and turn. Measure the narrow things in inches — doorways, the gap beside the bed, the space in the bathroom.

Photograph each room from the doorway, and photograph anything you have measured with the tape in shot. Write the date on the record.

Then note the things that have changed recently: which chair is now used, which room is no longer used, what has been moved to the ground floor already. Change is the useful signal, and only you can see it.

• Bed to bathroom: the route, the floor covering, the lighting, the door width
• Bathroom: what is beside the toilet and the bath, and the door width
• Kitchen: what is above shoulder height or below knee height
• Chairs: which one is actually used, and its seat height in inches
• Stairs: number of steps, handrails on which sides, lighting at both ends
• Entrance: steps up to the door, the handrail, and the surface
• Anything that has to be walked around, and any loose rug or cable
• Rooms no longer used, and when that changed

The equipment record, including who supplied it

By the time mobility becomes a daily consideration there are usually several items in the house from several places — a stick, a walker, a raised seat, a rail, a perching stool. Some were prescribed, some were bought, some appeared.

Record each one: what it is, make and model, who supplied it, the date, whether it was prescribed, bought or loaned, whether it is billed, the repair number, and any return date. Photograph the labels.

Add one column that matters more than the rest: who has been shown how to set it up. Equipment at the wrong height goes unused, and a walker that came home unadjusted is a walker in a hallway.

Ask the supplier or the therapist to check the settings and write down the date they did, so anybody can tell whether it has been checked this year.

• Item, make, model, serial number
• Prescribed, bought or loaned — and by whom
• Supplier, phone number, and the repair or out-of-hours number
• Whether it is rented and who is billed
• Delivery date and any return date, both in the calendar
• Who has been shown how to set it, and when it was last checked
• A photograph of each label, filed with the record

Write down what a normal day actually requires

Families argue about how much help is needed because nobody has written down what the day contains. Spend a week recording it factually and the conversation changes.

One line per task: what it is, how often it happens, who does it now, and how long it takes. Include the tasks that are invisible until they stop — bins, laundry, changing the bed, carrying shopping in from the car, the post, hair washing, cutting toenails, opening jars, reaching the top shelf.

Do not write what your parent can or cannot do; write what happened and who did it. That is an observation record, and it is the honest basis for both a family conversation and a conversation with a professional.

At the end of the week you will have a page that shows the real load, including your own. That page does more work in a family meeting than any amount of description.

• Task, frequency, who did it, how long it took
• Shopping, carrying, unpacking, bins, laundry, bed changing
• Bathing, dressing, hair, nails — recorded factually, no judgement
• Meals, and who cooks them
• Prescriptions collected, calls made, forms handled
• Driving, and how many trips
• The total hours, per person, at the bottom

What to ask an occupational therapist, and how to get one

An occupational therapist is the profession that assesses a home and a person together and recommends what to change. Ask your parent's doctor for a referral, and write down the date you asked and the answer you got.

When the appointment comes, hand over your written list and your photographs at the start. Ask for the recommendations in writing, in priority order, with a note of who supplies each item and who pays.

Ask the administrative questions too: what is the waiting time, is there a cost, which items are covered by the insurance plan, and who orders them. Then write down what you were told, with the date and the name.

After the visit, turn the recommendations into a tracked list — item, who orders it, date ordered, expected date, date arrived — because recommendations that nobody tracks tend to remain recommendations.

• Ask the doctor for a referral, and record the date you asked
• Hand over your written observations and photographs at the start
• Ask for the recommendations in writing, in priority order
• Who supplies each item, who pays, and how long it takes
• What the plan covers, and what needs a separate form
• A tracked ordering list: ordered, expected, arrived, fitted
• A re-check date in the calendar

Help, transport and the paperwork around them

Two administrative things make the biggest practical difference: arranging the help and arranging the getting-about.

For help, write down what is being asked for before you ring an agency: the tasks, the days, the times, and who is present. Then record the agency name, contact, agreed hours, hourly rate, invoice arrangements and the cancellation notice. Keep the invoices in date order in the binder.

For transport, ask each medical office the practical questions — parking distance, drop-off point, wheelchair at the entrance, time to allow. Ask your county's Area Agency on Aging what transport services exist locally, what they cost and how far ahead they must be booked.

A disability parking placard is an application form signed by a clinician. Ask the doctor's office who signs it, how long it takes and where the form comes from, and put the renewal date in the calendar the moment it arrives.

• The tasks, days and times you are actually asking for — written first
• Agency name, contact, agreed hours, rate, invoicing, cancellation notice
• Invoices filed in date order
• Parking distance, drop-off and entrance notes for each medical office
• Local transport services: cost, booking notice, phone number
• Parking placard: who signs, how long, and the renewal date
• A named driver against every appointment in the calendar

Questions