Langham Court

A first hand account of organising Respite Dementia Care

Posted on by Nicky Macfarlane

At Langham Court, we are not just there to support people living with Dementia, we understand the challenges involved in arranging a move into a care home and offer advice and support to the families of prospective residents.

MD of Langham Court, Charlie Hoare recently spoke with the husband of a new respite resident in Langham Court to learn about his journey as a first time carer organising a respite stay for his wife.

Can you share the background to your wife’s Dementia diagnosis

“When my wife was diagnosed in 2019 with a rare dementia called behavioural variant Fronto Temporal Dementia or FTD as it is often described as, our lives were turned upside down and inside out in an instant.

We live in a traditional family home and we’re not set up to deal with the demands that this dementia diagnosis demands of the near relatives.”

What led you to consider a respite stay in a care home for your wife?

“As the disease was progressing rapidly and I was having to deal with more personal care issues throughout the night, as my wife’s sleep pattern was non-existent, it often resulted in me only having a couple of hours sleep. This isn’t ideal as I was the main carer for my wife and there was the real fear of me becoming a victim to carer burnout.

Along with an indicated short prognosis, and in consultation with various healthcare professionals from Adult Care Services, the GP and the NHS, it was decided that I needed respite from caring.”

What were the challenges of arranging respite care?

“I found sourcing the respite care presented its own set of complications as we were looking for a care home that was able to look after her very specific needs and furthermore, she is under the age of 65.

Unfortunately, the local non-specialist care homes did not understand the condition and we end up being the square peg trying to fit into a round hole or being flatly refused, upon them learning of the challenging conditions that can be associated with the diagnosis. At this point I sought advice from fellow Rare Dementia Support members and fortunately we were introduced to Langham Court.”

Was there anything which surprised you when you started organising your wife’s stay?

“Having never been involved in having to sort out any care home facilities before it was a very steep learning curve. I naively thought that respite care, for my weekend away, could be organised very quickly, but soon learned that it isn’t.  From talking to a number of people, the general consensus was that respite care needed to be a two week exercise. Enough time for my wife to become accustomed to her new temporary home and enough time for Langham Court to understand my wife’s condition.

After a lot of negotiation with local Adult Care Services about arranging respite care at Langham Court after about a month it became apparent that it is not as easy as booking into a hotel.

Respite care is subject to a pre-admission assessment, as well as the right room being available at the right time. I just hadn’t expected the complexities, but was extremely glad when an agreement was reached.”

After all the heartache and finally selecting Langham Court for respite, what is your take on the experience?

“It was a positive experience.  I needed a break from the caring role and I’m very grateful of the two weeks’ respite stay. I visited my wife after the first week to make sure that she realised that I was still around, but by that time she had settled into her new home environment and we were both comfortable when I headed home, which was a great reassurance for me.

The second week stay then allowed me to get away for a short holiday with friends and that really helped me and showed that there can still be a life outside the caring role. My only schoolboy error was collecting my wife on the way back from the airport and expecting to get back into the normal, routine caring straightaway.”

What would you say to anyone in your position?

“My advice to anybody now would be, go away, enjoy yourself and come home for a couple of days before you go and collect your loved one.”

Taking advantage of a respite break also allows you to consider the suitability of the care home should you need to consider this route in the future for a permanent residential care home.

You’ve probably had the “please don’t put me into a care home conversation” and frankly, I don’t think that anybody wants to think about transitioning into alternative living arrangements but sometimes it makes sense.”  Husband of a resident in Langham Court

A final word from Charlie

This gentleman’s experience is one which is very familiar to myself and the team at Langham Court.  We hear similar stories from many of the family members who come to have a tour around the estate and are considering us as a lace for their loved ones to come for respite care.  We are always happy to talk through the care needs of someone living with dementia, or offer advice to their family even if they don’t choose Langham Court.

For more information or advice please do get in touch