It was with an iron heart and gritted teeth that the last-minute decision to take Kev away for the weekend was made! This offer was generously suggested and funded by Carers Respite. Well, what a great decision!
Four hours after a lovely meal (in the ‘romantic’ setting of the ute), I finally convinced Kev to come inside the unit. He consented with an “Oh, OK.”
Well, there we were nestled in bed at 9.30 – oh, for an early night!! Well, that lasted a good 5 mins before Kev decided he was far too excited and was up and off for an adventure! (How did I miss the fact that we were so close to a full moon????) So the wheeling and strolling began, along the many paths under the peppie trees, along the beachfront. Kev pushed himself determinedly up the slopes, and chuckled with delight as he gathered speed, navigating with precision down the other sides. Great fun for Kev and would have been for me too, but after being up for 18 hours it just didn’t have the same sparkle!!
So finally back off to bed, with Kev getting his back rubbed. I dozed off, but woke with a start to find Kev was halfway out the back door again!! If you can’t beat ’em join ’em, so off we went again, this time in the opposite direction, to explore the grounds of the resort. Well, all this is excitement was just too much for poor Kev, who developed a belly ache and ended up in the shower, which was not too user-friendly for him; so there I was helping him to shower and propping him up with my right shoulder, while he hung on to the slippery vertical hand rail for grim death. Once this ordeal was over Kev just cracked up laughing and gestured with his hands “whatever”. Humour is such a great thing!! We both had a bit of a laugh then got back to bed, but then he was up again for a spot of TV and rice snacks!!!! His speech blew me away as he asked how long we would stay, and where we were. We both finally both crashed at 2.30 am.
I was woken at 7 am by Kev, who was in great spirits, sitting up in bed and turning the clock radio on for some music!! I made a cuppa for us both and heard Kev yell out “Come on!!” I did a double-take when I got to the bathroom – there he was, standing, holding onto the vertical handrail, wanting the shower on and ready to freshen up for the day!
We went for a long walk through the grounds before Kev asked a passer-by for directions to the cafe for brunch. Prompt service was available, which was just as well as Kev’s window period for waiting is pretty minute! Scrambled eggs, toast and a coffee, then Kev was off independently to the car, while Paula, who had just arrived, and I caught up.
We had a really nice day, with a drive around to Meelup, Bunker Bay and around Eagle Bay, with great scenery of crystal clear waters and Kev steering the car for short times and doing far better than I could from the driver’s seat. Some lovely people took the time to chat to Kev, and this gave him enough of a boost to get out of the car and go shopping in Dunsborough. We browsed around and he was happy to look in the pet shop, and then with only a little assistance he got some cash out from the ATM!! We went for a late lunch and Kev ordered by pointing at the menu; he then got his money out of his pocket to pay and grabbed a number for our table with no prompting. We really enjoyed this outing, as the cafe was one that was a fave in the past. Back at the unit, Kev enjoyed a good snooze.
Pete and Carol arrived for the evening. Kev was very chatty and led us on an enjoyable, long walk along the beach front around to the road at dusk. Kev really loved chatting with many people and even befriended a couple of dogs on the way. He showed great verbal skills with obvious concentration, after a bit of a tune on the guitar in the evening and a long drive with Pete for some ‘bro time’.
Kev was keen on another midnight walk, but this time I managed to persuade him into bed and literally had to drag him out the next morning at 11 am.
I am so glad we went away together. The moral of the story is: “A change is good, but not always a rest!!” (lol) It was so great for Kev to get this stimulation. As we say here in Oz: “Life. Be in it!!”
For more photos of this weekend, click here.
21 comments:
What a great time you guys had! And so nice that Paula was able to come down to help for some of the time and that Pete and Carol were able to pop down too. This weekend was so good for you both, but I want other readers to know that while Kevin is smiling and enjoying himself here, he does need 24-hour care and his behaviour is often problematic to say the least! Of course Kevin can't help this and I know he is trying so hard, with wonderful results, but it is still totally exhausting for Alison, whose dedication I thoroughly admire and support as much as I can from a distance. Keep it up you two! I love you both enormously. xxxx
Glad you two had fun. Much deserved too I say!
Next time you're down that way make sure you pop into Eagles Heritage Park (make sure you are there at 11 sharp) as I think you would get a kick out of watching the Eagles soaring. Brilliant! :)
Cheers, Bec Dauti
Alison, this is so good- you make it sound like a story and is encouraging to read. Good to hear about the better responses from Kevin. I hope you have a lot of help with the care from paid services and not just family. Its very hard for them too to keep up handling the continual difficulties. Hope these paid carers stay longer for you than have done in the past. I'm sure you help them to do what they should be doing but hopefully, without too much intervention from you. Could you give Kev some sedatives at times so you could get a good sleep? Love M&D ps can't remember my google user, lost my addressfiles
There is a labour crisis in WA so there is very little in the way of support workers and we fall well and truly short of the hours allotted to us for help.
Kev has one lovely young woman, who has been here from the beginning and really enjoys working with him, and she is capable of doing all his cares, except showering. No, ‘intervention’ is not needed with Paula. However, as Kev is non-verbal and has very high support needs it is expected and appreciated by the service provider organisation that I play a role as educator. None of the staff have experience or qualifications in working with head injuries.
In fact I have been asked by the service provider to consult for them and assist in reorganising their systems, due to the high standard of care and great reputation Holmes Vacations had. I have actually had 3 requests for my expertise in this area. I do not question my role in fostering staff but do take pride in further education and a high standard of care.
THIS IS KEVIN’S JOURNEY. THIS IS NOT ABOUT ME!! Sadly, family play no more than a very minimal role in supporting him now, with some not even having seen him for months at a time! Kendie, Sharon (Kev’s sister) and I are his main family supporters. Jean and Peter also do what they can now they are becoming more comfortable with Kev’s new life. They do this for Kev, not for me. There has been little contact from those who have an emotional and historical connection with Kev, and in fact they don’t even want to know about the difficulties that are now part of Kev’s everyday life, even though it was a family decision to bring him home to be cared for and rehabilitated. All family members were in agreement with this group decision. This was not initiated by me. With Kerry’s help and her constant research for information on TBI, I have been the one supporting everyone, a huge load.
This was to be a team effort, but for some it seems it is easier to put their heads in the sand and use others as scapegoats to ease their consciences for abandoning Kev.
I have gone for 12 days with no support at times, and have frequently gone for days on end without any help.
Please remember, Kevin is not my father, brother, cousin, uncle or child, and I cannot and will not fill those roles; however, I believe we all have a responsibility to one another. The psychiatrist and other health professionals have said how important it is to have positive interaction with family.
There is no ‘blame’, but a justified disappointment about the selfish views and actions of others who are presently unwilling to get out of their comfort zones. ‘Maturity’ has nothing to do with this journey. No one could ever be ‘mature’ enough to cope with the destruction, devastation and compounding effects of TBI. But hey, this is how it is, you can run, but it is always going to be there. Or you can face the fear and deal with it. This will never go away, not after days, weeks, months or even years.
As in all areas of getting support workers, it is very difficult. Historically there is a high turnover in the industry; Glenda and Sid found this themselves during their short stay here. By ‘intervention’ it sounds as if you have been getting input from others who don’t actually know the full facts (though they think they do), so I want to clarify this here - we cannot have people who mistreat Kev, falsify hours or steal from us, which has unfortunately been the case. This has been handled by the agency, which removed the person in question.
Regarding Kev’s sleep pattern, it is often disturbed, as is common with head injuries. He sleeps a lot during the day and is therefore awake at night. Not usually as much as when we went away - that was exceptional.
I am here because I want to be. It is interesting to know what assumptions people can make from a distance.
Each and any one of us can walk away and have a life beyond TBI, but Kev has to LIVE with it. So who’s got it easier?
So let’s all put on our big girl panties and just do it.
And for the record, many people don’t like boundaries; however, I am regaining strength and will maintain those boundaries and not allow myself to be bulldozed by others or leave myself open to negativity and hurt.
Margaret, I thought I'd told you about how little support Alison and Kevin get - little has changed. This has nothing to do with 'Alison' herself - this has to do with the shortage of people wanting to take on such a demanding job - sadly the 'paid carers' are therefore few and far between and most people want an easy life, including most of their own family – an all-too-common scenario in this present day and age of me-me-me and lack of community. The message people live by these days is that responsibility belongs to someone else, and hence we have far too many 'Alison&Kevins' in this world (as an online search for similar cases will easily reveal) who are left to their own devices because everyone else thinks that some mysterious 'other people' are picking up the pieces.
As for 'intervention', Alison does no more of this than any other person in her situation caring for a loved one - again, an online search will quickly demonstrate this. Aside from that, what can one do other than 'intervene' when a loved one is left in soiled clothes (and I don't mean a little food down the shirt here), left without liquids, not given essential medications, spoken to as if they are stupid or deaf? I have personally witnessed Kevin in all these situations; it is totally unacceptable, so who would not 'intervene'?
As for those who find it hard to 'handle the continual difficulties', no one has it anywhere near as hard as the injured or the carer, in Kevin and Alison's case just as much as in others. Others can walk away after a few hours – Kevin can't do that, and Alison won't do that because she is decent and is doing what she (and many others) considers is the right thing, and I applaud her for that. People these days want their easy lives, but we all know that real life is not like the movies - real life can be damned hard, even for children, whatever their age - it always has been and it always will be - the difference is that some face reality and others run off and hide in their fantasy lives. Telling them it is okay not to share responsibility and not to show respect, compassion and consideration for the needs of others does not help them to come to terms with life; it merely helps them to stick their heads in the sand and fail to learn the lessons of life.
For some useful insight on some of the real difficulties faced by people who really are doing the hard work and the coping, take a look at some of the Fact Sheets on the Brain Injury Association of Queensland's site, starting with this one: Impact on Carers.
Hi Alison
Thanks for the photos.
A psychologist colleague of mine, Joy Breayley in Nelson, is very interested to take a quantitative EEG (QEEG) - brain map - on Kevin before and after HBOT. She is an expert in this field and it would give more understanding of how the brainwaves in different parts of the brain have been affected and an idea of recovery (+ the potential to use neurofeedback as a tool in rehab).
Regards
Tim, NZ (by email 14 Feb)
Hi,
Great photos. Give Kev a big cuddle from us.
Luv Linz and Chrissy (by email 15 Feb)
Hi Alison
Pix look great - all credit to you for all your hard work.
Regards
Gordon, Perth (by email 15 Feb)
Dear Alison and Kevin,
Thanks for the photos they are great, it looks like you were having a fantastic time together. Please let me know if you want to follow anything up for you. Have a great day we are looking forward to meeting you both when you come to NZ. Warm regards to you both and the family.
Kind Regards
Bridget, NZ (by email 15 Feb)
Great pics, Alison.
Cheryl, Australia (by email 16 Feb)
Sincerest of thanks for sending this through to me, Alison. I hope to be speaking to you very soon.
Kind regards
Caroline, Perth (by email 16 Feb)
Hi Alison
Such amazing and positive photos – while I am sure it was a great matter of organization and planning for you Alison – you both look so happy and relaxed. Every time I see a pic like this with Kev pouring his own bottle of water or chomping into a meal with knife and fork, it is hard to imagine that this is a man “that cannot be rehabilitated”.
Miracles do happen – when you have the courage that you do.
Best wishes
Leanne, Bunbury (by email 16 Feb)
Hi Alison and Kevin
Good to hear about your wkd away... good on you, will you try it more often now? ... I can imagine you came home a bit exhausted after your late nights!!! In the photos, Kevin looks more and more like his old self, and his fine motor control must have improved so much.
Have you heard about the carer's retreat in South Perth, which you can use, for $15 per person / night. (Just you, or you and a friend, or you and Kevin) Managed by Carers W.A. ph 1800 242636. On South Perth foreshore, 8th floor, lovely views, walk down to Mends St shops and restaurants, ferry, river walks. You need to book well ahead. Apartment comfy, not 5 star! (owned by Anne Bluntish who lives on 11th floor of the bldng) We spent last wkd there... great!
Keep up the good work girl, and a hug for Kev!
Cheers, Kathy, WA (by email 17 Feb)
Hi Alison
The pics indeed show Kevin at his best and hopefully he will work towards achieving his full potential. Well done for all of your efforts!
Kim, Perth (by email 17 Feb)
Hi Alison
Quite remarkable!
Regards
Paul, WA (by email 18 Feb)
Thank you and good luck.
Grace and peace of the Lord be with you.
Nathan, WA (by email 19 Feb)
Alison,
Wonderful news! I am happy to hear that you going back to NZ. The medical community there will have a lot less attachment to the Australian "he can't be helped." You will have professionals who HELP. Hurray!
I miss New Zealand. It is a wonderful place.
I find it wonderfully amazing that you have continued to help your husband recover. Very few people would have done so. They would have given up.
(by email)
Sorry it has taken a week to reply but we have been away. The photos are brilliant we cannot believe how well Kevin looks. It's a real tribute to all the hard work that has been done. Looking forward to seeing more.
All the very best to you both,
Love,
Nikki & Allan (by email 22 Feb)
Hi Alison, Just read your blog about the weekend away. FANTASTIC!!! Kevin and you both seemed to really enjoy it! Reading comments, it sounds as though your are off to NZ too! is this a holiday or are you making the move back home? All the best, love Cheryle (MacGregor)
Lovely pictures Alison.
You both looked like you had a lovely time.
Lauren (WA)
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