On Friday night I dropped BJ off at respite and marvelled at the ease with which I now do it. Next month it will be one year since BJ first tried an overnight stay at respite. I can’t believe how much we have all grown through this process, particularly me. Last year I wrote a post about my feelings of anxiety on his first visit. Click here to read all about it.
Letting go was not easy and trusting others to remember all those little details was hard but it has all been worthwhile. To be honest, it has been smooth sailing and I’ll share some tips later in this blog post.
So many lessons have been learned over the last year. I’ve learned that BJ is fine away from us for two nights. Not only is he fine, he is happy, doesn’t fret for us, or starve. I have been reacquainted with what a full night’s sleep feels like. My how I miss regular and good sleep. Slowly I have relaxed and realised it is good for the whole family to have this time.
BJ is usually offered respite twice a term and he has now graduated to two night stays on each visit. It took a few visits for us to feel comfortable with him being away for that long but now it just feels normal.
BJ looks like he feels at home the minute he wheels through the door. The house has been brightly decorated so although it has all the equipment which makes it practical for kids and teens with a disability, it has a homely welcoming feel. Once BJ has dropped his bag in his room he tends to organise someone to put a Mr Bean episode on the computer. It is interesting for me to see how he has a different routine at respite and just how comfortable he is with this.
It has been wonderful to see BJ accept assistance from others and happily fit into new routines.
It is terrific to see him socialising and being with his peers without parents around. Going bowling and being out with people his own age is what he should be doing at 19 years old. He should have this kind of fun.
It has provided me with some comfort for the future. Seeing BJ happy and well looked after without us is good, though no-one ever knows a person as well as their parents.
Hubby and I have appreciated knowing that a couple of times a term we will have undisturbed sleep. Waking up in our own time is surreal.
AJ has had the opportunity to have sleep-overs with friends at our house which was non-existent before BJ went to respite due to his night-time wakings. She loves setting up in the lounge room and giggling with a friend until they are exhausted, without worrying about waking BJ. She should be able to do this.
We have tailored some weekends to AJ’s particular interests which I hope has made her feel special and appreciated. She is a wonderful sister to BJ and usually accommodates his likes rather than her own, as she adores him.
MAKING THE TRANSITION
BJ sleeping at respite was made much easier with his participation in the Cerebral Palsy Alliance’s school holiday program. He knew the staff, was familiar with the house and the staff understood him.
The house manager went out of her way to ensure we were comfortable when we started. The lines of communication were open and we supplied lots of information to help make it an easy start for BJ and the staff.
Familiar staff were working with BJ.
Before he stayed overnight, BJ went for a day on a weekend. He was part of the routine and we picked him up after dinner. It was a taster for him without being thrown into the deep end.
Staff were brilliant in simulating BJ’s bedtime routine to ensure that getting off to sleep was as easy as possible.
Keeping me in the loop with text messages was comforting.
I still phone in the morning and night each day of BJ’s stay. I like to know how BJ’s day has been and how he has slept. The fact that staff never make me feel like a helicopter parent is wonderful. It gives me a chance to check on the day and gives staff the opportunity to ask any questions.
You may be reading this and wondering what I am leaving out. What has been frustrating or hard? As I said at the start, it has been relatively smooth sailing. There are always going to be small frustrations but respite has had no more of these than any other setting. When someone is non-verbal I think it is hard for others to understand how much communication helps a parent feel a part of things. We had a few visits where we didn’t have anything to share with BJ. As soon as I expressed this to the house manager it was sorted. We now get photos on BJ’s iPad and information written in BJ’s day program communication book.
Clothing, or other items not coming home, is probably a result of washing being done and a busy weekend. We now have that sorted. We print out a photo of the items being packed and include it in BJ’s bag. Staff can then tick items off the list as they pack them.
This last weekend BJ was sick at respite. He went on Friday and there was no sign of sickness. He was fine until late Saturday night and woke up vomiting. It is the first time he has been sick at respite and I was so impressed with the care he received. We went to pick him up early and there was no sign of “thank goodness you are here”, he seemed exceptionally happy and content despite being quite unwell. This was such a sign of how content he is at respite. The staff had done an exceptional job of taking care of him and I am sure it was quite unpleasant for them but at no point did they make me feel bad about it.
I am grateful that we have such a wonderful service available to us. It was a life saver for me to have BJ happy at respite for two nights when Hubby was in China for a week. I had the night and day shift to myself and appreciated two night’s sleep to recharge my battery.
BJ wouldn’t be going to respite if I didn’t feel that it was stimulating and fun for him. There had to be something in it for him or he wouldn’t be there.
I still hate the name respite but we just refer to it by the name of the house.
You really have to take the step when you are ready. Don’t listen to others. Someone close to me suggested it wasn’t a good idea but that person gets a good night’s sleep every night. I also felt that preparation for the future was key. It would be unfair to BJ to suddenly start putting him in respite at the age of 40 when he had never been anywhere other than home.
It was a big decision for us but the right decision for the whole family. Do you have any tips to help others give it a go? Are you still holding back from giving it a go? What are your concerns?
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David Stratton says
I recognise so well what has been going through your mind. I am the one in respite but the thoughts you have are the ones Ros (my wife and carer) has. Therefore I know them well.
What stuck out for me?
Being happy in respite is important. I am but if things go wrong, as they must occasionally, there is a huge magnifying glass attached and the whole respite boat is rocked. I think the feeling of us and all the different health professionals as a team (but guided by us) carries us through the odd battle that has to be fought.
The nights of sleep that you have, the staggering boost to self-worth that Ros is experiencing, the ocean outings that Ros’ dad went on in respite from her mum – on and on the list grows of what a Carer craves. It is sanity in a world that can sometimes seem crazy. So I suppose the one thing I would add is “Find a way”
For you this has been the preparation – BJ has been compliant. In Ros’ social work career, when she ran a carers support group, the biggest issue she saw was care recipients that would not consider what BJ and I are doing.
How to work through that appears one of the biggest unsolved mysteries.
It is so lovely to get feedback from someone using respite as an adult. It seems to me that you have great consideration for Ros and her needs. As you say, I am not sure that is the case for everyone.
I would find it very difficult to do, if not impossible, if BJ was not willing to go each visit.
I think it is fantastic that you and Ros work through the issues together and that it works for you. Care from your loved one is always the best care but it is wonderful that you can give her some time for her. I feel refreshed after a weekend’s break and I am sure I am a better Mum for it.
Thanks for sharing your experience.
Take care. Julie