First hand advice for organising a respite stay for the first time

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.

Langham Court MD, Charlie Hoare recently spoke with the husband of a recent respite resident, to understand the challenges he had faced organising a respite stay for his wife for the first time and how Langham Court offered a fantastic solution:

"When my wife was diagnosed in 2019 with a rare dementia called behavioural variant Fronto Temporal Dementia or FTD https://www.raredementiasupport.org/frontotemporal-dementia/ as it is often described, 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.

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.

This then presents its own set of complications as we were looking for a care home that is able to look after my wife's very specific needs and furthermore, she is under the age of 65. Unfortunately, our local non-specialist care homes did not understand the condition and we ended 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 Society members and fortunately we were introduced to Langham Court.

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, was possible but soon learned that it isn’t. 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 in about a month’s time, 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 and for the support of the Langham Court team in making all the arrangements.

So, after all the heartache and how we finally got to Langham Court for respite, what is my take on the experience?

It is 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 my wife 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.

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

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.”

Husband of a Respite resident in Langham Court at the H&L Estate, Hindhead

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