Interview with a Caregiver

By Claire Rosenhead

 I am a hip dysplasia patient and had both a left PAO and right PAO within 7 months apart. My Mum has been my main carer throughout the journey. I interviewed her to gain her perspective of the journey.

An interview with my Mum

Q1. What were your first thoughts when you heard about your daughters’ hip dysplasia diagnosis?

Guilt, I thought it was my fault and I had missed it when Claire was a child. At no point during her infancy was hip dysplasia mentioned. It was only when Claire was an adult that she started to complain of hip pain.

Q2. What did you know about hip dysplasia? And where did you get more information from?

I had heard of hip dysplasia in dogs as well as children, but not in adults. I would say I had a basic knowledge to know what it was but did not fully understand the implications of it.

I got more information from attending Claire’s consultant appointments, from the internet and from Claire (she’s a physiotherapist).

Q3. How did you feel when your daughter went for her first PAO?

I was more worried than Claire. I understood that it was a major surgery and Claire would have huge limitations on her mobility and independence afterwards. I had attended all Claire’s clinic appointments and had full trust in her consultant so was not concerned about the surgery itself, just the implications. Claire made it easy for me; she was able to ask the right questions to gather more information about the surgery. Some of the questions she asked were:

  • How long will I be partial weight-bearing for post op?
  • What type of stitches/dressings do you use? i.e. do they dissolve or need removing.
  • How long before you can start hydro after the operation?
  • When would you review patients in clinic post op?

Q4. What role did you play in the early days after her PAO?

I was Claire’s legs. I would need to help her with everything, from preparing meals, drinks, help her dress/shower, get in/out of bed. I think this lasted for about 10-11 weeks before she was able to do a little more for herself.

Claire was in a wheelchair initially, she was too fatigued and weak to push herself, therefore I helped pushed her. Pushing the wheelchair was more physically challenging than I expected. Also, getting the wheelchair in and out of the chair was a difficult and needed skill to fit it in the car. Claire has a dog, so I became her dog walker too during her recovery.

I would say that the biggest challenge was remembering her medication. She had a lot of different medications on a regular basis, and was unable to manage it herself due to the affect of the medication and surgery. To help me I made a timetable to make sure I got the right medication at the right time. Usually once I got the hang of the medication, it changed!

Q5. What did you find most challenging during the PAO recovery?

I think the hardest part for me was the change in my daily structure. I wanted to make sure that Claire had someone around all the time for support, so between my husband and me we had to work together to change our normal plans to do this. Initially, in the early days I did stop my hobbies, i.e. swimming and cycling, to provide that support. But luckily Claire could join me at swimming, so it wasn’t long before she joined me and did her hydrotherapy exercises.

Q6. What advice would you give to other parents/carers going through the journey or have the journey impending?

Patience, allow extra time for everything, flexibility and ‘broad shoulders’ to weather the highs and lows with your relative/friends during the recovery.

Q7. If you were going through this recovery again, what, if anything, would you do differently?

We felt more prepared during for the recovery after the second PAO. We adapted into a new routine quicker and had all the equipment ready. I think everyone will recovery differently, so listen to your loved one and work together during the difficult and better times.

Q8. Is there any equipment you would recommend for others that helped you and your daughter through the recovery?

The wheelchair was fantastic as it allowed Claire to come out with me, particularly in the early couple of months when everything exhausted her. But use a cushion in the chair, as you can feel all the lumps and bumps on the path, which was not comfortable for her. Claire’s friend loaned her a recliner chair, which was also brilliant as she could lay back and sleep but also sit up with her legs elevated to make it more comfortable.

We used the Red Cross to loan or buy equipment. It was a great resource to be aware to use.