Part 2: The sandwich carer, disability equipment and the OT maze

The following piece (Part 2) was written by Jeanne Carlin*. Jeanne is a social worker, and is also the mother of a disabled daughter and a carer for her parents. Jeanne calls herself the ‘sandwich carer’ and writes:

I have been aware for a couple of months that my parents were both sleeping on their recliner chairs in the living room – my mother because she had hurt her back falling and my father because he cannot understand that he could go upstairs to sleep if my mother was not there. I assumed the situation with my mother was temporary and once her back was better (she was receiving weekly treatment from an osteopath) she would return to sleeping in her bed.

On the weekend of the 18th May 2013 I took my mother down to London to a family event and realised that the bed situation was not a temporary one as she was struggling to get on and off an ordinary bed. As she was due to go to her GP to get the results of x-rays on her back (22nd May) I suggested that she ask the GP for a referral to an OT to get a profiling bed. I was also aware that my father was struggling to get up and down from the bed which he sat on when he got dressed so suggested they probably both need to be assessed.

My mother found she had a crushed vertebra when she went to the GP and he agreed to a referral to a health OT. At this time I was also told they were struggling to get on and off the toilet upstairs and in the past social services had dealt with the toilet issues. Then the situation became further complicated when the CPN arrived for his regular visit and said the dementia team had an OT and he would make a referral to her.

By the 31st May we had not heard from the OT so I phoned the CPN and we agreed it would be silly to have so many OT’s involved. He spoke to the dementia OT who offered to do a visit the following week (5th June).

I attended that visit at my parent’s house. The OT stated very quickly after getting in the house that she could not assess my mother; she could only assess my father, who has dementia. She carried out an assessment on my father for a bed and assistance getting on and off the toilet. She then stated she could not order a bed as that was done by the district nurses in this area of the country. She did offer to raise the bed onto blocks to make it easier for my father to get up and down. (I very nearly asked if she was intending to only raise my father’s side of the bed!!!!!). She offered to provide a rail surround for the toilet.

She then told my mother to phone her GP and ask for a referral to the Crisis Intermediary Treatment Team – as she could see that my mother urgently needed a bed. We did this immediately and the GP made the referral on the same day (5th June) and my mother had a phone call that day to say they would get back to her by the end of the week with a date for a visit.

On Monday (10th) we were told an OT would do a visit on Friday, 14th June at 9am (10 days after a crisis referral was made). Time was changed to 3pm the day before and the OT did turn up at 5.15. She very quickly agreed that my mother needed a profiling bed urgently, but stated that she did not have a referral for my father so would need to contact the GP and find out who was sorting that out.

We heard nothing from any of the professionals during the week of the 17th June and because I was away I was relying on my mother to follow up the beds. At this stage my father developed leg ulcers – not helped by the fact that he was sleeping in his chair with his legs on the ground. A nurse was now coming in 3/4 times a week to dress his legs. On the 25th June I spent the afternoon at my parents and was determined to sort out the problem.

I started by phoning the community equipment company who do the deliveries and was told there was no referral. Then I phoned the district nurse team who told me it was still with the Crisis OT. I told them that as it was a crisis referral it should not take 3 weeks to get a result. The woman agreed to phone me back. After 2 hours I phoned again and was told that the district nurse would visit on Friday (28th) to do another assessment. She was too busy to visit any earlier. I explained that we would be on holiday from the 5th July and I needed the beds to be delivered to my parents before this date so that I could sort out their rooms as they were not able to do this.

The visit took place on the 28th and we have been told the beds will be delivered sometime this morning.

The added complication is that the dementia OT also told us that sometimes if there is a stairlift the outsourced equipment provider refuses to carry the beds upstairs as they claim it is unsafe to carry anything past the stairlift. She therefore advised that my husband or I need to be there when the beds are delivered so we could carry then upstairs as the equipment provider is responsible for putting them together and if we don’t carry them upstairs they will assemble them in the living room. I await to see what happens this morning!

We still need to sort out the toilet as the surround was too small for my father who is rather large – so yet another OT – to arrange a visit with!

Read Part 1 of The sandwich carer, disability equipment and the OT maze HERE

*About Jeanne
Jeanne calls herself a sandwich carer. Why ‘sandwich carer’? For the past 30 years I have cared for my daughter Erica, who has profound and multiple impairments as well as some very complex health needs. She continues to live at home with my husband and me with a very good mix of support, which enables her to live a life with some independence. Now for the sandwich part. In the past few years I have taken on increasing responsibility for my parents who live about 10 miles away from me. This has included holding power of attorney for both financial matters and health and welfare decisions. My father has dementia – probably Alzheimer’s – and my mother is physically disabled.

I consider myself as having a lot of expertise in the disability field having lived with my daughter, but also as a freelance social worker/ consultant for the past 12 years working as a writer, researcher, trainer and consultant. I have been active as a campaigner both locally and nationally. However my entry into the world of dementia has made me feel totally inexperienced and at times very confused and inadequate. Although I know my way around the health and social care systems (if they would just stop re-organising them every few years) I don’t know my way around dementia.

I have struggled not to argue with my father when he insists that his parents, and even his grandparents, are alive. I have struggled not to lose my temper when he phones at 2am to ask if I will come and collect him to take him home (we don’t know where that is). I have heard others say ‘just go along with him’, ‘agree with what he says’. It just ain’t as easy as all that. As my mother’s arthritis progresses as she can do less around the house I struggle not to resent their reliance on me. Our roles have been reversed and I have become the parent to my parents whilst at the same time having care responsibilities for my daughter.

Follow Jeanne on Twitter: @jeannecarlin