Tag Archive | Respite

The Hardest Decision

quotivee_1024x768_0012_What-seems-like-the-right-thing-to-do-could-also-be-the-hardest               I have had a few hard decisions to make in my lifetime so far.  The first one was deciding whether to turn off life support for my fiancée back in 1987.  None of us knew what had caused him to collapse and end up in a coma, with no signs of life.  His family and I chose to do the kindest thing – let him go.  We later discovered that he had had a brain haemorrhage.  He was 24.  So I’ve grieved in the true sense, rather than in a complicated sense like I am doing now.

The second decision was not quite so hard – deciding to apply to come and live in Australia.  I was persuaded by my mum and it was a successful decision that I have not ever regretted.  I arrived here in 1991, in my mid-20s, with my whole life ahead of me.  I had the support of my aunt and uncle, and their kids (my cousins) and I loved it.  Once I found myself somewhere to live and a job to do, I was happy.  I met Steve in 1993 and we haven’t looked back since.

Now I’ve made another hard decision, which I think has been the hardest decision so far.  It is time to place Steve into permanent full time care.  I have agonised over this decision for a few months, but my tipping point has always been when he reaches the stage of incontinence.  While I do not intend to embarrass him (or our family), he is not quite there yet, although there have been a couple of mishaps.  Pamsie said to me a few months ago that probably by Christmas we would be looking for a Facility for him.  I wasn’t so sure then, but now I am.

So I have been looking at a few places.  One of them(Pennwood Village) has been recommended to us by three different people who have had family members in there throughout the last few years, most recently only a month ago.  Recommendations are always good to have, as you have no idea what a place is like otherwise.  You can go on the “feeling” of the place, how you are treated as you walk through the door to be shown around, how friendly the staff appear to be, but you never truly know until the day arrives when you take your loved one to live there.  Pennwood Village is two minutes drive from our house, and halfway between our home and Pamsie’s home, so location-wise it is perfect.  I initially went to see it two weeks ago, a few days after I had made my decision, so I was somewhat emotional (and I still have my moments!).  The Village (as I’ll call it) is a Serbian Community but caters for other nationalities as well.  I met with Dubravka, the Site Manager.  She has a strong European accent but I could understand her clearly.  She suggested that we start off by putting Steve into respite for a month, see how he settles in and then go from there, with the possibility being that the respite turns into permanency.  I was surprised at the length of time, but she assured me it’s best for Steve as it would settle him more easily than a few nights here and a few nights there.  Fair enough.  She didn’t have time to show me around on that occasion, but suggested that I take Steve there for lunch the following week.  I left, saying I would be touch.  When I arrived home I phoned Pamsie to let her know what I had done and I’m thankful that she was supportive.  We were on the phone for 30 minutes, discussing it all.  About an hour later, Dubravka called me to say she had a month’s respite available and someone had cancelled – would I like to take up the room for Steve?  He would need to go in that night.  OMG!  I wasn’t expecting something so soon, but was grateful that she called me.  I asked how long could she hold the room for as I couldn’t make a decision immediately and needed to discuss it with the family.  She would hold it until the following day.  I immediately phoned Pamsie back.  After a short discussion, I persuaded her to phone Dubravka to get a bit more information out of her.  A few minutes later she called me back.  After some tears and discussions, we decided to decline this offer as we are not quite ready (emotionally, and physically) and we really want him to spend his last Christmas at home while still living at home, but with the promise that the next time (perhaps in January or February) we will be ready.

I took Steve to lunch there on Wednesday.  Surprisingly he didn’t question me at all as to why we were there, and what the facility is for.  Obviously there were some residents around, although most were in their rooms as it was a stinking hot day.  Dubravka showed us both around the facility – it’s really nice.  It’s set up with Houses (about six or seven) which are separate from each other, but connected by covered outside walkways with gardens either side of the walkway.  Each House has about ten large, airy rooms, a dining area and kitchen.  The facility is secure without being like a prison.  Residents can wander around the gardens and the whole facility, but they cannot leave the grounds unless someone is with them as exiting requires a code.  The majority of the staff are European (probably Serbian, Yugoslav, etc) but they all seemed pleasant enough.  Then it was time for lunch.  We ate with the staff, who eat the same food as the residents, which is good (it means that the staff’s meals are no better or worse than the residents’ meals).  Sitting with us was a guy who was originally from Poland.  I asked him to speak with Steve in Polish and Steve responded fairly well, but because he was put on the spot, he became a bit lost.   The guy said he spoke well.  So if he does more in there, at least there will be someone who could converse with him if he reverts back to one of his native languages, although we would obviously like to discourage that, as we wouldn’t be able to talk with him!  We were there for just over an hour.  When we left, Dubravka gave me a hug and said she’d need to discuss some more things privately with me at some stage in the New Year, then shook Steve’s hand and he leant in and gave her a kiss!  He didn’t ask any questions at all when we arrived home, which surprised me, and I didn’t offer any more information to him.  I’m sure he knew it was an Aged Care Facility.

I have since seen two other facilities – one I didn’t like as soon as I walked in the door.  It had “the smell” of disinfectant.  I realise that it means that it’s clean, but I can’t stand the smell.  I was shown around the older (cheaper) area which was at the back of the facility and was like a rabbit warren.  The rooms were small and poky.  The newer (more expensive) area wasn’t too bad, with the rooms being slightly larger and more airy.  But I’d already made up my mind – this was not the place for Steve.  It also doesn’t have a secure area, as the Village does have a “Memory Support Unit” which is additionally secure.  The other place wasn’t too bad – similar set up to the Village, but without the gardens.  The Villa’s (as they call them) are connected by corridors.  Not quite so secure as the Village, but there is a secure “Memory Support Unit” which is completely locked down.

So now we wait until the New Year and hope that something comes up. images

In the meantime, he has been enjoying his Tuesday’s at Seasiders – the Day Respite Centre.  He will start to go there on a Friday as well next year.

Since mid-October I have been accessing some additional services to ensure that Steve is not left on his own, particularly when I am at work.  Pamsie got in touch with Home Instead Senior Care, which is a private company providing qualified, police checked CAREGiver’s to spend time with people in their own homes.  Pamsie, Andrew and I met a lady (Lee) who came out to us one Saturday to discuss our needs.  She advised us of the cost and we let her know Steve’s interests.  She arranged for Mike to meet Steve the following week.  So we organised for Mike to spend 5 hours from 10am each Friday with Steve, while I worked.  It still meant that Steve would be on his own from about 8.30am until 10am, and then from 3pm to about 4.45pm, but at least he was occupied during the main part of the day.  While Steve was reluctant about it happening, we have since heard that he actually does enjoy his time with Mike, despite complaining to me about each visit!  While it is a costly exercise, it is also a necessity.

His ACAT approved him for a Level 3-4 Home Care Package, which are as rare as hen’s teeth, but we have managed to secure a Level 2 Home Care Package with Resthaven.  Unfortunately it doesn’t allow us many hours per week – in fact we have someone for 4 hours each Thursday morning – but we may be able to add a couple of things in time, depending how much money is left in the bucket.  I am surprised at the cost but there is nothing we can do about it unfortunately.  The HCP started in mid-November.  We secured a lady called Julia who cleans our house for us on those Thursday mornings.  She is obviously a qualified carer as well, so keeps an eye on Steve, feeds and waters him before she leaves.  Friends come up in the afternoon to spend the afternoon with him which he also enjoys.

Other than that, he is with me, or I am with him – whichever way you want to look at it!  It is difficult to keep him occupied, particularly when the weather is so hot (like it is at the moment – we are currently experiencing a lengthy heatwave, which is highly unusual for December – we have had three days, so far, of over 40 degrees celcius, and still have two more days to go, before it cools down to the mid-high 20s – it’s not something we relish!!).

In mid-November, we both stayed at an overnight respite centre, called Norman House, for one night.  NH is set up like a normal family home – four bedrooms, two bathrooms (one set up with disabled facilities), kitchen, lounge and dining area, and a lovely garden.  It is secure, with access and exit being through a locked gate.  Again, Steve was reluctant at going there but soon started to enjoy himself.  Spouses/carers are allowed to stay as well, hence why I was there too.  It is staffed by qualified carers/nursing staff 24 hours a day.  NH can accommodate up to 7 people, but usually they have about 4 as each person is in a separate room.  We had a nice dinner and then retired relatively early to our room.  The following morning, I told Steve that he was staying there all day as I had to work.  Again, he was annoyed, but when I collected him he told me he had enjoyed the day, but didn’t know exactly what he did all day.  So I’m glad he seemed happy.  I booked him in for a night on his own, which he went to this week.  I didn’t tell him before we left home as I wasn’t sure of his reaction.  When we arrived, he knew what and where the place was, and asked me why didn’t I tell him.  He also said to me – which blew me away – that he likes coming here!!!  So I felt very relieved that he appeared comfortable and happy about the situation.  I left him in the arms of a very sprightly 90-year old lady called Marjorie who enjoys dancing!!  Guess what they may have done that night?  I went home, as I was due out for dinner with friends.  They collected me at 6.30pm and we went to a lovely Vietnamese restaurant in Prospect.  As I wasn’t driving I was able to have a couple of glasses of wine.  When I collected Steve the following afternoon, he was still dancing with Marjorie!!!  No, apparently they hadn’t danced the night before but they had still had some fun together, which is all I care about.  He was relaxed and happy.  When he goes for his next visit, he will be staying for a whole weekend (Friday through to Sunday) in early January, and I think he will have a ball.

So things are moving along here, albeit in a downward way for him, but at the same time, it will be a positive for him.  I think he will flourish in a more structured environment, rather than wandering around like a lost soul at home not knowing what to do with himself.

Our Christmas will be a slightly bittersweet one for us this year, knowing what we know will happen in the New Year.  However, we have to make it as enjoyable as we can, smiling through our tears, so that Steve doesn’t pick up on our sadness.

 

I would like to wish all my followers a very Merry Christmas, and good health, wealth and happiness for the coming year of 2016.

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Thank you for following my blog this year.  See you in 2016.

Forget-Me-Not   original pattern 2

Patience is a virtue I do not possess much of

And believe me, anyone caring for a loved one with dementia 24/7 needs extra amounts of it.  I wish I was born with endless bucketloads of it as it is very difficult to deal with things in a calm way when you don’t have patience!!

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The extension trial for Steve has just commenced.  This time we know he is on the real drug, 200mg per day.  It will be interesting if we notice any major difference – we may not, so I’m not holding my breath.  At least he has agreed to be part of it; if he decided not to do it, he would not eligible for any other trial as his mini mental scores are way too low.

Pamsie and I have now activated the Power of Attorney, having received a letter from the GP stating that Steve is legally incapacitated to attend to his own financial affairs.

Steve has also had his licence removed from him by the GP.  At the moment, he is upset and angry about losing his licence – he doesn’t seem to understand why it has been taken from him, when he “built the shed, renovated the house, fixed everything up that needed fixing”.  Obviously the reason it was removed is because he is not safe on the road anymore, and we need to keep everyone who drivers, including him and me, safe.  But he won’t accept that, so I just try not to talk too much about it.  He is still trying to comprehend how he will go fishing, even though Andrew has offered to take him out on the weekends, and Pamsie and I have suggested that we get in touch with the boat club and there might be someone there who would be willing to go out with him.  But all these suggestions are being pooh-poohed at the moment.  In time, he will come around to our reasoning, but it will take a lot of persuading, and sometimes, it will be a case of Andrew showing up and saying “we’re going fishing today, dad”.  Of course, it’s his independence that he’s lost – it must be very hard.  I know I would struggle with it, as I’m sure anyone would who is suddenly not allowed to drive anymore.  I feel decidedly guilty about it, but at the same time I am relieved that the roads are slightly safer without him driving.  I am thankful that he is not blaming me, although today it sounded as though he was when we had a talk about it.  I said it was entirely the doctor’s decision and nothing to do with me.  He eventually accepted it, but it took a little while of calm discussion – yay, I had patience this morning!!  Obviously Steve must NEVER know that I was the one who instigated the removal of his licence – I reckon I am the best judge as I was the one to go with him when he was driving.

We all met with Renee from Alzheimer’s and Steve liked her a lot.  She was easily able to persuade him to go fishing with someone rather than on his own, and that she would try to source someone who could become his “fishing buddy”.  Later that same day, I had a call and set up a meeting with Helen from Seasiders (a respite centre at Henley Beach).  Steve didn’t really gel with Helen terribly well but she was able to say she would look at finding him a “companion”.  She came up with a chap called Gavin, who works at Seasiders as a Carer.  We met Gavin the following week.  He is a very pleasant chap – not sure of his age, perhaps in his late 50s? – who has a speech impediment.  Immediately Steve felt comfortable with him, because, in a way, Steve has a speech impediment too.  Gavin is interested in fishing (although he hasn’t done it for some time), he loved Steve’s Pilot (the old car) and is about to start Ballroom Dancing classes through the WEA (which is how Steve and I met in 1993!).  It appears that they have a lot in common, so Pamsie and I are hoping against hope that Steve will willingly accept Gavin and happily go out with him.  So the first time they will spend together is next Tuesday, from 10am to 1pm.  I thought I’d just start They Love Us More and Rely On Usit slowly, with Gavin coming to us so that Steve is comfortable in his own “space”.  Gradually as time moves along, I will ask Gavin to take Steve out for a walk along the beach and maybe have a coffee while they are out, then eventually Gavin might be able to take Steve to Seasiders for lunch, and finally to join in the Activity Groups that they have there.  Step by step, things will start to fall in place, where Steve is not completely reliant on me anymore.

A couple of weekends ago we went to a car club function, a Mystery Run to Normanville.  One couple in the club have taken us before and asked us if we would like to join them again.  Barry and Mary are a lovely couple and obviously quite happy to take us, which is great as it means I don’t have to drive and navigate at the same time.  We met the rest of the members at Harbourtown at 10am and casually drove down to Normanville via the back roads.  It was a lovely drive on a lovely sunny, but cold, day; the hills are looking really green and healthy at the moment.  We had a great lunch at the Normanville Hotel.  We were home by about 4pm.

Last week, we had a difficult week.  I had learnt of a number of friends (via Facebook) who had lost beloved family members to various illnesses and diseases, so was feeling sad for all of them.  Plus we had to deal with the loss of Steve’s driving licence.  Because he was really upset on Wednesday, ending up in tears, I decided not to work last week.  We didn’t do much on Thursday, but on Friday we went to see some friends who we haven’t seen for some time – Kevin and Prim.  We ended up having lunch with them.  It was great to catch up with them and Steve enjoyed the time there.  I think they were quite surprised at how much he had declined, but I had warned them when I spoke with Prim recently.

On Friday evening we went out to dinner with other friends – Wally and Jeanette – to the Hampstead Hotel where we had a nice meal.  They have invited us up to spend a weekend on their houseboat at Mannum, so we have now organised that for early August.  Should be a relaxing couple of days.

On Saturday afternoon we went to a 60th birthday party just up the road from us.  The birthday boy – Graham – is a member of the car club.  He had the party in his Man Cave (which isn’t quite as big as Steve’s).  We were all thankful of the portable gas heaters that he had hired as it was really cold that night.  There were a few people from the club who we knew, including Barry and Mary.  We started talking about Steve’s loss of licence and how he won’t be able to drive the Pilot anymore (he hasn’t driven it since October last year).  I suggested to Steve (in front of Barry and Lee) that perhaps one of these guys could take him out in it.  He seems fairly receptive to the suggestion.  Barry was really excited about it, and kept saying to me later, try to persuade him to let me drive the car.  He’s obviously itching to have a go!!  However, since then, Steve hasn’t been quite so keen, so I will have to work on him a bit longer before he hopefully eventually capitulates!!  Barry will be thrilled!

We went ten-pin bowling with our group of dancing friends on Sunday.  Everyone who went bowling noticed that Steve had declined.  Every time he had to bowl the ball, Maurice patiently showed him what to do.  It was great.  Steve enjoyed himself, and I could relax for a bit.  I have since received an email from John and Deslie saying: “Sorry to hear about Steve’s declining condition.  It was quite obvious at bowling today.  I can understand how very difficult it must be for you.  I am going to talk to some of the others to see what we might do to help.  Please let us know whatever it is we can do to help.” which I thought was really nice.  I do receive lots of offers of support – I just don’t quite know how to use them all.  I have always found it difficult to put my hand up and say “hey, over here – I need a hand with ….” so I have to learn to do that.

We do have some fun times – maybe not as many as we used to, but we tend to laugh at Steve’s expense (unfortunately) such as when he says a wrong word, or if he puts clothes on the wrong way, or does something funny.  At least he laughs too.caregiver-needs-caregiver

We are having a few days away in Loxton at the end of July, with my cousin and his wife, which will be nice.  I hope the weather will be slightly warmer than it has been here of late – the mornings have been really cold.

 

Until next time ……

Forget-Me-Not   original pattern 2

Changes are afoot!!

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Where do I start?  So much has been happening since I last wrote here.

I have organised another front door key for Steve that is a bright blue.  Therefore if he rings me again and says he can’t get in the house, I can direct him to the blue key on his keyring.  So far so good, but he hasn’t been out much without me so haven’t really tested it properly!!

We had another “situation” continuing on about the van batteries.  I had been shopping and popped in to see the mechanic (Richard and his wife Angela) who confirmed what I had said to Steve all along – “the batteries are more than likely perfectly OK, the back battery has nothing to do with starting the engine, but if it makes Steve feel happier he can bring the van down and we will check it for him”.  I said to them that he would probably accept it from them as they are the “professionals”.  They know he has Alzheimers and agreed with my comment.  They also suggested that he had probably accidentally left something on, such as the lights, which is why the battery may have dropped and not started the van.  Who knows – I didn’t question Steve on that as I knew he wouldn’t remember.  I phoned Steve and said he could take the van to them or wait for me to get home and we could go together.  He decided to wait for me.  After lunch, we headed back to them with Steve driving and me trying to stay calm.  He didn’t do too badly all the way to the Port and Junction Roads junction.  He was first at the lights so when they turned green off he went – but he stayed at 40km/hr.  I asked him to speed up a bit as he shouldn’t drive that slow in a 60 zone, especially with an impatient truck driver right behind him.  I assumed that he knew where he was going – after all he’s been down there dozens of times, both with and without me.  WRONG!  He was driving slowly as he couldn’t remember the turning and then went straight past the road he was supposed to turn into.  I was then a bit aggravated (I know, wrong thing to do) and said he would have to turn left at the next lights.  As we headed to the lights, he didn’t get over to the left lane, and by the time I mentioned it again, he indicated and then got thoroughly beeped and sworn at by the truckie who was turning left behind him, as Steve was about to cut him off.  He went back into the lane as though to go straight ahead.  Behind the truckie was a cop car but she didn’t bat an eyelid – unfortunately – as she also turned left.  As there ended up being no traffic behind us, we reversed slightly and made a left turn just as another car came around the corner from the other direction – by this time I was really concerned and said as much.  Thank goodness the other car stayed in his lane.  I said to Steve that I didn’t want to be in the van with him anymore as I didn’t feel safe.  But we carried on. At the next lights we turned left again and went through a couple of back streets to get to Richard’s.  Before we pulled into Richard’s, I said “I’m driving home”.  As we pulled in, I noticed that Angela’s car wasn’t there and a man I had never seen before came towards us.  I couldn’t see Richard either.  The man informed us that unfortunately Richard’s dad has just passed away (he also had Alzheimer’s) so he was just covering for them for a few hours.  Obviously it was sudden and unexpected.  I really don’t think that Steve comprehended what he was being told.  Anyway, we left to go home – unfortunately Steve stayed in the driver’s seat and I didn’t want to cause any more of a scene so stayed put too.  We didn’t say a word to each other while driving home.  When we got home, Steve started looking for something in the kitchen and I asked him what he was looking for, and he ignored me.  So I said, well if you’re going to ignore me I’m going out, and I did.  I went to Arndale Shopping Centre to look for a Sympathy card.

When I got home about 40 minutes later, there was no sign of Steve.  He had gone out but not in the van.  I had no idea where he had gone as he’d left no note.  After a couple of hours, I started to get a bit worried.  I didn’t know where I could even begin looking for him – he could have walked anywhere.  He could have gone to see our neighbour just up the road; who knew?  Anyway, thankfully he turned up.  As he came in the door, I asked him where he’d been and that I was beginning to get worried about him – I said it calmly.  He just looked at me and went and sat in the lounge.  I made us both a drink.  I asked him again where he’d been and he said “I walked halfway to your place” …. huh? My place?  This is my place – but eventually he managed to say TAFE.  Then the conversation turned to our drive to Port Adelaide.  He blamed me (once again) for not letting him know where to turn off.  I said to him that I assumed he knew where he was going and if he didn’t would it really hurt his pride that much to ask me?  And it just went from there.  I ended up yelling at him and swearing at him.  I told him I thought he shouldn’t be driving anymore as he wasn’t safe behind the wheel.  I said there are too many impatient people on the roads these days who hate drivers like him who are slow and appear to have no idea where they are going.  We just kept going over and over all of it.  Amazingly enough I didn’t cry, although I felt like it at one stage, but I was just so angry and scared that I think the tears got frightened away!!!  He eventually started to say something about not being able to go out in the boat – this was a good 15-20 minutes after I’d mentioned about him not driving anymore – so I assume he was relating it back to that comment.  I said well I could take you and the boat to the boat ramp and you could still go fishing.  (I have already sussed out one of my work colleagues who is more than happy to teach me how to tow and reverse a trailer.)  We didn’t really say much more about it.  We had a pretty silent evening that night only talking when it was absolutely necessary.

The following day I met my friend Cherie for coffee about 12noon at Semaphore – she must have known something was up as she contacted me via text message.  So I had something to do for a couple of hours.  We met, we talked, I calmed, we laughed, and we said goodbye around 2.15pm as she had to go and get ready for work.

I had a wonderful day at the Wellbeing Day last week put on by the “teamtlc tender loving carers”. It was held at The Monastery. The venue was lovely and peaceful. The day consisted of a workshop, where we talked about the issues we are all dealing with at home, then after a wonderful lunch (oh, and morning tea!) I spent some time with Heather (one of the counsellors) before returning to the relaxation and meditation session. I then had a lovely half hour massage by Jana, before having a final cuppa. We were all given a little bag of goodies at the end of the afternoon. Thank you, Jenny and your wonderful team – this is the kind of thing I need every month!! I loved it and hope it won’t be too long before the next one is organised! 😀

The trial has now finished that Steve is on, but he has the option of continuing on the real drug from the end of June for another 12 months.  I am hoping he will continue as we will all know that he is on the actual drug.  We are also able to withdraw at any time if we can see that there is no difference.  Unfortunately we won’t be finding out any time soon about what he’s been on as the trial around the world has to be completely finished by everyone before any results are released.

My headaches are unfortunately continuing.  I had a terrible one last week and had to leave work early on Friday.  I spent the afternoon in bed and felt much better by the evening.  Thankfully I was OK on Saturday as we had the Dance for Dementia fundraiser to go to, but on Sunday morning I woke up with an even worse one – and no, not due to drink (I was driving!).  Pamsie took me up to the doctor who organised an MRI to ensure nothing nasty was happening.  Thankfully, there is nothing nasty.  My Pituitary Gland is slightly off centre and my sinuses are a bit blocked.  I need a blood test to determine if the Pit Gland will cause any issues but other than that all good.  So I guess I put it down to stress and hormones.

I decided to splurge $130 at West Lakes Shopping Centre and bought a lovely poncho type jacket-y thing in black with a fur edging.  I saw it there at a previous visit and decided that I had to go and look at it again.  I will get so much use out of it particularly with dancing.

The Dance for Dementia was a fun evening.  It was good to catch up with Professor John Mamo again.  The venue was larger this year but the music was by the same people used as last year and just as good.  I am yet to find out how much money was raised for this worthy cause.

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I decided that we needed a day out somewhere, so said to Steve one day that it would be lovely to visit the Mount Lofty Botanic Gardens to see the autumn colours, hoping that they were still around.  So off we went.  We had a lovely walk around the Gardens and spent a good couple of hours slowly wandering around.  Unfortunately most of the colours had disappeared but some were still around.  Next year we will have to ensure to go a few weeks earlier.  It’s well worth it.

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We have had some problems in our house recently to do with the lights not working on a couple of days.  It was really strange.  The switch in the fuse box for the lights (we have a separate one for power) had flicked itself off overnight.  We had power to the house, so things like radios, kettles, TVs etc all worked.  I called an electrician (Domenic Furina) who came out on the first day (a Saturday) to have a look but he couldn’t locate anything untoward, and he was kind enough not to charge us anything!  By that time, the switch was able to be turned back on and stayed on so the lights worked.  A couple of days after that, the same thing happened.  So I called Domenic again, and he came out the following day to investigate it.  He spent three hours with us and checked all the junction boxes in the roof.  Finally the last one (always the way!) he checked appeared to have a small problem, which he sorted.  He charged us just over $250 for his time and work – not bad considering he spent the afternoon in dust and dirt up in the roofspace!  So far, things have been fine.

One of the washers in the hot tap in the shower had to be changed, so as it was a fairly simple job, I let Steve do it.  At least he would only get wet if something went wrong!  He used to change washers with great ease, and it usually only took him about 10 minutes to do.  This time, however, it took him three hours.  I left him to it – after all it kept him occupied.  Unfortunately the tap is leaking when it is turned on, but it is not dripping when it’s off.  He’s also put the cover to the tap back on crookedly, but I’m not going to say anything to him. He’s fixed the main dripping problem which is great.  It’s so sad to watch him struggle with how to do this simple thing – well, I say simple; I have never in my life changed a washer before but it looks pretty straightforward!

We will be having a few changes over the next few weeks.  Pamsie and I have managed to persuade Steve that we need to enact the Power of Attorney to take the pressure off h10547575_669633749779392_4753947591381152613_nim when he has to sign anything.  He takes ages and ages to sign his signature and it really doesn’t look like his signature anymore.  This will involve (as per the instructions in the EPoA drawn up by our solicitor) certification from a medical practitioner  that Steve is “legally incapacitated” and “physically or mentally incapable of attending to his own affairs”.

I have sought assistance from our GP to take Steve’s driver’s licence away from him.  He is getting too unsafe on the roads (as detailed above recently – and there are numerous other situations I could detail, but won’t).  I wrote to our GP who called me late in the afternoon and we had a discussion about how to go about it.  I am thankful that my letter has finally received some attention from the GP as he has been saying frequently to me that Steve should not be driving, but it’s appeared that he is unwilling to take him off the road.

The other change that will be happening is respite.  Pamsie and I met with Renee from the Alzheimer’s Association on Tuesday morning to discuss our options.  Steve has refused to go anywhere but has agreed (to Pamsie) that he would be OK with somebody coming to our house.  We are able to access 4 hours per week (at least to start with) and we have requested a gentleman who is preferably interested in fishing and old cars!  Hopefully we will get this all in place before the end of June as the rules and regulations are changing from there.  Renee will be meeting Steve next week – we will tell Steve a little white lie about her, which he won’t have a problem with – to determine what level of support he will need.

Hopefully my next post will be a positive one, but I am already thinking that the next month or so is going to be a bit stressful.  After all, we are taking his independence away from him, and I, for one, feel really guilty about it, but I know it has to be done.  So if I see anyone who reads my blog and I am a bit down, you will know why.

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Until next time ……

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Birthday Celebrations

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It’s Steve’s birthday today – 69 he is!  We haven’t done much as the weather is atrocious outside – cold, wet and very windy!  My aunt Pam came over for lunch (we had a nice bowl of homemade vegetable soup) but didn’t stay for long.  Pamsie is coming for dinner tonight – we will be having soup, salmon fillet with herb cream, and a birthday cake (carrot cake).  Steve thinks his new phone is fabulous – I just hope he can make good use of it.

 

 

While I don’t wish to be negative about this joyous day, I need to make mention of my “horrible week” that I had lately.

A couple of weeks ago, Steve suddenly became very confused with what day it was.  It was soon after the episode of the missing boat club keys.  Once they had been found, we decided that the spare key, which had been leant to him, could be returned to the club.  The boat club has a bit of a social calendar and each month they have what is known as a “Tea Night”.  So we worked out when the next Tea Night was going to be (3 May) and that Steve would go down to the club to return the key.  However, he kept thinking that every single day was Sunday 3 May, even though I tried explaining to him that it wasn’t.  When I went to work on 30 April, he seemed really lost and confused when I left and I was a bit concerned.  I contacted Pamsie and asked her to give him a call to check on him.  She did so and then let me know that he still seemed really confused, and that he was convinced that she and I, along with her new partner, were at the Birkenhead Tavern without him.  (We had arranged that the four of us would go to the Birkenhead for lunch to celebrate his birthday – it was arranged for the same day as the Tea Night.)  It obviously really got to him because next thing I know, Pamsie’s texting me saying that he’d just phoned her at work and was going down to the boat club – this was around 4.30pm.  She decided to leave her work and go to our place to wait for him – she was due to come around anyway.  I had been really upset at work all day – worried about him, annoyed and frustrated at his behaviour, etc etc, and had been in tears numerous times throughout the day.  When Pamsie’s message came through, it really worried me, so I left early as well.  We met at home and had a good cry together, and a bit of a discussion about the eventuality of having to “activate” the Power of Attorney so that we can sign documents on his behalf, as he is struggling greatly to really comprehend anything to do with finances, and can’t even really sign his signature easily anymore.  (He practices it for ages – and we all know that the more you practice signing your signature, the less like your signature it looks!!)  We also discussed that I need to contact Lacey at Alzheimer’s to commence respite on one day per week so that I can have a “me” day.  Eventually he arrived home, looking rather sheepish because nobody was at the club – I wonder why!  He finally believed Pamsie that it wasn’t Sunday, rather it was Thursday, and there were still a few more days to go before he needed to go to the boat club.  I took the following day off work as I was so concerned – thank goodness for an understanding workplace.  I did go in for a couple of hours just to finish of some stuff that I’d started the previous day.

All of this frustration (on my part) and confusion (on his part) had been happening for a while.  I was beginning to reach my limit and not know where to turn.

I am so thankful that the confusion seems to have mostly disappeared, now that Sunday has been and gone and he went to the club as planned.

We also had lunch as planned at the Birkenhead Tavern – very tasty and far too filling!!

So for now, life is back to relative normal.

I contacted Lacey and we have arranged to meet her in early June for discussions.  I also contacted Heather at Alzheimer’s in relation to the Power of Attorney and she has provided informative and thoughtful response, which Pamsie and I will discuss together soon.  I am feeling a little more positive at the moment.

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Lost …. and found again!

Steve lost the keys to the boat club recently.  He wa10414556_457526491051018_3769474441472311442_nnted to go out fishing one day, and just on the off chance before he left, I asked him if he had the club keys.  I don’t usually do this, but probably a good thing I did on this particular day.  He had a look in the usual place where he keeps them in the van but they weren’t there.  We then spent some time searching for them but to no avail.  So guess what?  He didn’t go fishing that day!  I was going out so didn’t want to spend too much time looking for a needle in a haystack as they could have been put anywhere.  The worst case scenario could have been that he left them in the lock and somebody took them who may not be a member of the club.  I imagine if that was the case, the Club would soon catch up with them as it is on CCTV 24/7.  I decided to send a text message to the Membership Officer (Paul) and then I phoned him.  He was not in the least perturbed about the loss of them, and offered to provide a (hopefully temporary) key so at least Steve could go out fishing if he wanted to.  We arranged that Steve would go to his house to collect the key from one of his sons.  After getting his address (thankfully he lives about 5 minutes drive from us) I gave Steve instructions on how to get there, but he just couldn’t understand where it was.  I drew a rough map on a piece of paper – no luck.  I showed him on the street directory – still had no idea.  Eventually I offered to take him there, with him following me in the van.  That worked.  So a spare key is finally in his possession – I made sure to immediately put it on his van keyring so that it doesn’t go missing.  So off I toddle on my visit to my aunt’s not really worrying about the keys too much.  When I arrived home later in the afternoon, the lost keys had still not been located.  As he now had a key, he went out fishing the next day and came home with three fish.  The weather was dreadful that day – with rain for most of it, so he was cold and wet as well.  Thankfully he was home by about 4pm (I was at work) so I didn’t have to worry as it was getting darker earlier than usual.  He managed to fillet the fish pretty well, thank goodness.  Obviously he hasn’t forgotten (completely) how to fillet bream – it’s just garfish that he gets terribly confused with.

Pamsie is coming over to us once a week for dinner, usually on a Monday.  When she came earlier this week, she spoke to Steve about a new mobile phone for him that would be really simple to use (or so it looks).  I had no interaction with them during this conversation (I did the washing up!!) as I wanted it to come from her.  The phone we had bought only 12 months or so ago appears to be confusing for him, despite having written instructions that I have created.  It seems that he is struggling to read and retain the information and trying to complete the process – all at the same time.  This phone that Pamsie has found is a simple phone designed especially for people who have dementia (along with other ailments, such as blindness – as they do Braille phone too – along with people who have arthritis; as well as just being a Senior or a child).  It is called KISA – Keeping It Simple Always.  Amazingly enough it is Made in Australia by an Australian Owned company – must be a rarity these days!!!!  The screen can be personalised with a picture of your contacts or just their name, which requires just the press of one button to call your contact.  Steve agreed that it looked like a good phone.  So Pamsie and I decided who we would have a contacts and decided on (obviously) us two, Andrew and Wally (who services the motor on Steve’s boat).  There are various options of numbers of contacts you could have (up to 10) in various layouts, along with choices of colour of the phone.  We chose the 8 contacts, and have a button with my name written on it and another button with my photo (effectively I am taking up two contacts but hopefully it will make it easier for Steve as his reading skills decline even more).  We did the same for each of the four of us – a name and a picture.  On the back of the phone we chose the option of customising it with critical medical information and address details.  The phone cannot be used to send text messages, access the internet, or dial any other phone number apart from the contacts which are programmed into the phone during manufacture.  We can use our own SIM card (“amaysim”), rather than being on a contract (through “Vodafone”) as Steve hardly uses the phone.  So the SIM card has been posted off to KISA and we now wait for a little while.  Yes it is a bit costly but it is also peace of mind, particularly when he is out on the boat on his own.  Hopefully the phone should arrive within about 10 days – maybe sooner.  Here’s the link to give you the full details:   www.kisaphone.com.au

When he came back from fishing on another occasion, he arrived home about 5.30pm and had his lights on which was good.  He turned the engine off and got out of the van but didn’t turn the lights off.  I suggested that he turn them off; I was testing him to see if he knew how to turn them off.  Obviously he’d figured out how to turn them on – he probably spent ages doing so.  He had absolutely no idea how to turn the lights off.  After a while, I pointed it out to him and said, if you don’t know how to turn your lights off maybe you shouldn’t be driving.  (After all, he needs to know where all the bits and pieces are on a vehicle if he’s to continue to drive.)  He neither disagreed or agreed with me about my comment.  So I am still in a quandary about what to do.  In an absolutely horrible way, I would like for him to have some kind of scare when he’s driving that makes him “think twice” about driving anywhere again.  I don’t want anyone to get hurt – I’m not that mean spirited – but if it’s the only way to get him off the road, then so be it.  The Transport Department doesn’t want the responsibility; our GP doesn’t want the responsibility; who knows who would take responsibility?  I don’t want to be the bad guy, and I don’t want Pamsie to have to be the bad guy either – that’s not fair to either of us.

I was out and about earlier this week and when I arrived home, I was greeted with a set of keys to the boat club.  Steve had found them …… he’d put them in the Pilot (his old classic car) – no idea why or when!  Anyway at least they have been found and no bad person has hold of them.  I will now have to remember to ask him each time he comes home where the keys are so that they don’t go missing again (hopefully!).

I went to a Mind, Health and Happiness Expo at the Council today.  It was quite good with a lot of displays from various Aged organisations, such as Alzheimers Australia (Karen from the Support Group was there giving a short presentation), Resthaven, Council services, Uniting Care Wesley Bowden, etc.  It was aimed mostly for the older people in the community, along with carers (such as moi).  Sophie Thomson from the ABC’s Gardening Australia TV show was there and she gave a very interesting presentation on the healthy benefits of gardening.  I picked up quite a lot of information relating to in-home respite options – the Council can provide this service, along with staff from Resthaven.  I need to investigate all of the options and find someone who can spend time with Steve as he declines, particularly as he is resistant to going anywhere for respite.

I have decided that I might try Yoga at one of my local Community Centres.  I have never done it before but have heard great things about it, although my mum is not so keen on me doing it.  I need to do something that is relaxing and almost meditative to try and lower my stress levels when I seem to be almost ready to explode.  Luckily for me, the Yoga session is held on a Tuesday morning for an hour and a half, so I will try that out in the next few weeks.

It’s Anzac Day on Saturday (25th April).  100 years ago our Anzac soldiers fought a dreadful battle at Gallipoli in Turkey.  Gallipoli cost the Allies 141 000 casualties, of whom more than 44,000 died.  Of the dead, 8709 were Australians and 2701 were New Zealanders.  May they all Rest in Peace.  Lest We Forget.

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FORGET-ME-NOT   original pattern 2