Tag Archive | emotions

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

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Slipping Away

Baby I’ve been watching you
Watching everything you do
And I just can’t help but feeling
Someone else is stealing you away from me
And it’s breaking me in two
Watching you slipping away

memoryloss

These are lyrics from a song by Max Merritt & The Meteors.  Even though the song is about another person stealing his lover away, in my case it’s not another person, but another entity.  Steve is slowly slipping away from me because of his disease, and it is breaking me watching him.

Over the past month we have had some real ups and downs.  I’ll start with the ups.

Our dancing group organises various things throughout the year, and one of the things was a “Games Day” where we descend on Pamela and Terry’s house for eating, drinking, being merry and playing board or card games.  Not much game-playing seems to happen now though!  It is a good relaxing afternoon with lots of wonderful food that we all bring to share.  I had been a bit stressed the previous week so it was good to be amongst friends who had a basic understanding, and who Steve was comfortable with.

We had a great time in Loxton with my cousin (Cameron) and his wife (Josie).  The day before we left, I asked Steve to clean my car for me and check the tyres and windows washers.  He managed to clean the car.  However he couldn’t seem to work out filling the window washer bottles, so I ended up doing it.  He also didn’t check the tyres, which was a bit frustrating as I could see one that looked a bit soft.  However, I left it and checked it when we arrived at Blanchetown – would you believe it was down to 20PSI – it should be 32PSI!  So I checked the rest of them and then I was happy.  Josie had arranged a wonderful facial for me the day after we arrived so I spent an hour being pampered and came out feeling really relaxed.  Thanks Josie.  Afterwards we all went to Banrock Station Winery where we had a delicious lunch and then had a walk around their wetlands, which unfortunately were dry as they had been drained so that all the invading weeds and fish could be removed.  We will have to go another time when it is flooded.  The following day Steve and Cameron went out on a boat on the River Murray, while Josie and I browsed through the shops in Loxton and then headed to Renmark.  We went to the Woolshed Brewery and had a coffee and a small bite to eat, before having a “proper” lunch at the Renmark Club.  Josie was out in the evening as she was performing in the local amateur production of “Oklahoma” at the Bonney Theatre in Barmera.  The three of us stayed at home and did some online searching for a gift for my aunt and uncle who were about to celebrate their 50th wedding anniversary.  On the Sunday we had a lazy morning with a cooked breakfast.  Josie was in the show again from 2pm which was the finale, and we were also going to see it.  It was a fabulous show and we all enjoyed it.  Afterwards there was an “after-show” party to which we were invited.  It was a fun evening with lots of food and drink and karaoke.  We were home by about 10.30pm as I could see Steve was starting to wilt after such a long day.  We left them the following morning to come home.

The weekend after that we were invited to lunch at some friends who go dancing.  They live in the Adelaide Hills and earlier this year were struggling to save their house from the bushfires which raged around them.  They were one of the lucky ones who managed to have a house to go back to, but they did lose some plants and trees on their property. We had a lovely few hours with them – it’s nice just to be able to get to know people in a relaxed atmosphere without the blaring of music happening in the background (at the dances).

And finally, the third weekend we went back to the River Murray but this time to Mannum where other friends (Jeanette and Wally) moor their houseboat at a marina just outside of the town.  We only spent one night with them but it was good fun.  Wally took Steve out for a walk with their dog (Stella) while Jeanette and I sat and chatted over coffee initially, then the champagne came out.  During the afternoon we consumed two bottles of champers – yummo.  We had a fire on the riverbank in the late afternoon and evening before even that became too cold so we migrated back to the warmth of the ‘boat.  We all turned in by about 9.30pm, and were up around 7.30am the following morning.  It was a cool windy morning.  Once we’d had a big fry-up for breakfast Wally decided to move the boat back into the marina as he was worried about the wind getting stronger and having difficulty in manoeuvring the ‘boat.  Once that was done and the ‘boat was safely moored, he took Steve out in another smaller boat to go for a cruise up the river.  It was a nice relaxing time for me, but within a couple of hours they were back as Steve apparently kept asking if I was OK!  See, that’s what happens when you are their “rock” that they rely on – they don’t want to be apart from you for long, which is quite frustrating!  Anyhow, we left them around 3pm and were home by 4.30pm.

The following day we had lunch with my aunt and uncle who were back from their trip to Queensland, then it was off to the Hospital for our final visit.  We had decided to withdraw Steve from the trial.  We are sad that we won’t see the wonderful staff there again, as they have really looked after both of us so well and with such a caring, empathetic manner.  We had the “exit interview” and then left.  Just like that.

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Now to the doasking-for-helpwnward spiral

Pamsie, Andrew and I decided it was time for a get together to discuss all these things that are starting to happen and how I can get some extra help.  I had sent them both a pleading email (see the next few paragraphs) to help more as I was starting to not cope at all well.

I had to call Pamsie over at short notice as I just couldn’t cope with Steve’s tears one Saturday afternoon; it was upsetting me too, and I ran out of words to try to explain.  Steve was (is) still not understanding – and is getting very upset – why his drivers licence has been taken off him, and reckons he can buy one back.  He keeps talking about seeing a friend called Garry (who works for one of our local Councils) who will be able to help him, but I think he is just getting confused because the council reception area was the meeting place when he had to have the driving assessment.  Somehow his brain is thinking that it was the Council who was involved with the driving assessment!  Obviously it wasn’t.  He was also asking for the key to the van so he could drive it around the block.  I have taken the keys away and hidden them, but I noticed on the Friday when I came home that things on my computer desk had been moved and the box underneath my desk had been rummaged through so I reckon he was searching for them as well.  I am worried he will find the keys, so I keep changing the hiding place – I hope I can remember where I’ve put them!!  He doesn’t seem to understand that he is not allowed to drive on any roads – he thinks a quick trip around the block will be OK.  If the police catch him, it will be a different story!  Or worse, if he has an accident ….. not worth thinking about.

Since we came back from our lovely weekend in Loxton, things initially went well.  Monday and Tuesday Steve was fine.  On the Wednesday, I was doing some cooking, which was to be our dinner on Thursday night (when Pamela and Terry came over – more details in a mo …).  I asked him to do something (what I thought was a simple job) of moving some poppers (press-studs) which are screwed into the wood above the window in the laundry.  They hold the block out curtain behind the blind, which in the summer keeps the heat out, and in the winter tries to keep the cold out.  Since Pamsie and Steve put up the new blind when I was in Melbourne earlier this year; the poppers were in the way and the blockout curtain can’t be used properly.  All I wanted him to do was try to take the poppers off and re-screw them into the front of the piece of wood instead of the underneath part.  I showed him what I wanted and he seemed to understand, as he said, that’s easy.  An hour later he was still figuring out what to do – lifting up the blockout and the blind, getting confused with the fact that there are two layers to the blockout curtain, etc.  He just looked completely bamboozled.  I eventually said to him to not worry about it as he obviously was finding it confusing and difficult to do, and I said I would get Pam (and him) to do it for me.  However he still persisted, and I started to get really annoyed as he was not really doing anything except, by now, annoying me!  I told him to go outside (it was still light and not too cold) to his shed to find something to do out there as I’d had enough.  I went for a “break” in the loo (!!! – my only place of salvation these days!) for a short while, and then decided to clean it, which took me about 10mins.  When I came back to the kitchen, he had all the cupboard doors open, and was searching avidly (obsessively) amongst all his paperwork.  I asked him what he was looking for – he tried to explain but I didn’t catch on as he missed so many words.  I closed all the cupboards and told him to go away.  He went away for a few minutes them came back and started searching again.  It ended up with me asking him about 5 times what he was looking for and he eventually said “I don’t know”.  “So, if you don’t know, STOP searching – only stupid people do things like you’ve been doing!”  I know, hurtful, and I feel guilty about the words, but I’d had enough of it, it was so annoying.  I eventually went into our bedroom, shut the door and sat on the floor by the window and cried for about half an hour.  I calmed down after a while and went back to the kitchen – I had to finish cooking for Thursday nights dinner and then cook for our evening meal that night.  I went down to the bathroom to wash my face; Steve came out of the bathroom and apologised to me, but I don’t know if he knew what he was apologising for.  Anyway, we settled into a mutual calm for the evening.  We went to bed around 9.30pm (our usual time).  We fell asleep but then I was woken by his snoring – I hadn’t put my earplugs in – so I asked him to turn over – he usually does when he’s not really awake.  But he didn’t.  He sat up in bed.  I put the light on and he was trying to unbutton his shirt.  I told him to leave it and go back to sleep on his side.  He just didn’t seem to understand – maybe because he was in that half-awake state; I don’t know.  Anyway, he didn’t do what I asked, so I got up and went to the back bedroom to sleep and spent the night there.

I didn’t sleep terribly well, even though the bed is quite comfy.  I woke up with a blazing headache but had to go to work.  I left early just to get out of the house, and when I got to work was in tears for a majority of the morning, but I managed to cope with the work I had to do.  It was probably a blessing that I had work on Thursday.  Some (dancing) friends of ours were coming over around 2pm to help Steve to prune our fruit trees, so I knew that he had some company at least in the afternoon.  They stayed for dinner – it was the least I could do for them – and they left around 9pm.  Both of them (Terry and Pamela – yes another Pam, how confusing for Steve!) are carers so they know how to speak and deal with someone who has dementia, and Steve has known Terry for years – through TAFE and dancing.  They are willing to come up each week to help finish off the trees and just spend time with him while I’m not there.  How good is that?

You know, I get to the stage where I want to call one of his kids and say “HELP come and sort him out – he’s driving me mad” but then I think of the response – “it’s not him, it’s the disease, put it into perspective, etc etc” – which annoys me: I know it’s the disease, but it’s not what I want to hear at that point! – and then I think it’s just me getting annoyed with him (as I do tend to react far more quickly than I should) and I don’t know if I’m over-reacting or not.  So I don’t bother.  All I know is – how much longer can I go on?  At the moment, I feel like placing him into a nursing home – I’m told, I will know when that time comes!  If I had my way, it would be today, but I know I wouldn’t be supported in that as there is no real reason that he needs to go into one – only my sanity!!!  Maybe I should go into one!!!!!!

He is really starting to get a lot worse.  He appears to be OK when in company but then “crashes” when I am the only one around – and it’s in those times that I can’t always manage to stay calm.  A lot of the time I feel like just walking out and never coming home, but I know deep down that I can’t do that.  I would never be forgiven, and I would not forgive myself if anything happened to him.

I am starting to get concerned about leaving him on his own when I am at work all day, even though I only work two days per week, but I don’t know how I can fix it so he’s not on his own.  Friends will start to take him out every now and then, but I am not going to rely on the fact that it will be each week on both of my work days – I don’t want to lose those friends by overloading them.  I also don’t want to tire Steve out, because then he would be worse!  One of my friends (Pat) has offered to just come and sit with him – she was used to doing that with her son-in-law who was very sick towards the end of his life.  I had coffee with her the other day in Glenelg, and like all of our friends, is concerned and worried but supportive.

I guess I feel as though I don’t want to “burden” our friends to the point of losing them; but at the same time I would like them to help more, but I just don’t know how to ask.   I have never had to ask for help before and it is really hard, along with all the other hard things in my life.  I know that I need help now but I just don’t know where to go or what to do.

Nobody knows what it is like when no-one else is around – he is not the same person.  In front of people he’s not too bad (sometimes) but on his own with me, he’s very different.  I don’t know how to explain it.  We have heard that this happens because I guess he is trying harder when in company, and therefore gets more tired when it’s all over.

I wish others could see him struggle in the morning over getting dressed, taking his tablet, putting his breakfast together, drinking his cup of tea; and then in the late evening about going to bed, cleaning his teeth, getting undressed, etc.  It’s absolutely heartbreaking to have to show him some of those things every single day.  No wonder I’m in tears a lot of the time.  I’m surprised I still have tears left actually!

So we had a get-together.  They made a couple of suggestions, which I initially agreed with then I changed my mind.  One thing was to get a dog to keep Steve company.  They both know I am not a dog-lover, but as he appears to be calmer when with a dog, I thought … maybe it might be OK.  However I have changed my mind as I really do not want the additional stress of having an animal.  There’s also the possibility of Steve leaving gates open and the dog escaping.  I’ve decided that Pamsie will just have to bring her dog around, once she and Andrew have installed gates on each side of the house!  Another suggestion was that we get a live-in carer.  Again, I though yes OK, that would take some of the pressure off me.  BUT we would completely lose our privacy – we don’t have an ensuite bathroom, and we would be sitting in the lounge in the evenings with a stranger, and I couldn’t be comfortable with that and I don’t reckon Steve would be either.  I have since found out that they can be quite pricey, unless you advertise for one, but then there are the challenges with wages, tax, super, blah blah.  No thanks!  They didn’t actually come up with pro-active suggestions, so we’re still stuck.  We all agreed that Steve shouldn’t b e left on his own when I am at work, so I am investigating with the Alzheimer’s Association how that can be overcome – maybe with another person coming to us on each of the days I am working..

We are all trying to think of ways to overcome all these issues, but it’s really difficult.

I took the afternoon off work on the day before we headed to Mannum, as I had a few things to try to get ready and I knew that Steve would not be much help.  When I arrived home, I found the front door wide open and he was not in the house or out in his shed.  I also discovered that he had left some documents on table which are usually stored in our little hidey-hole as they are confidential – they happened to be passwords to my computer, PIN numbers for bank cards, online banking logons and passwords.  I couldn’t believe it.  Although I know that he doesn’t really have any idea what they are.  When he came home a few minutes later (he’d been around the corner talking to someone!) I went off at him.  But he didn’t seem to realise that if some idiot had walked in and found those, they would have had a field day and stolen all our money.  Then later that afternoon, I put some break on to cook to take up to the river the next morning.  I knew it was due to finish around 7pm.  I went to my Zumba class and when I got home (about 6.40pm – I went to buy myself a small safe afterwards!) the breadmaker had been turned off and there was a lump of uncooked bread in it!  Well, I lost it then with him.  I knew the bread wasn’t cooked – I could tell immediately.  I asked him why it was turned off.  He said because it was finished.  I said no it wasn’t due to finish until almost 7pm.  He had turned if off when the numbers were showing 1:00 instead of 0:00.  So, instead of thinking rationally, I exploded yet again.  I threw the bread into the sink, yelling at him about how he’d wasted it, and that I was supposed to take it up to the river the next day.  (I didn’t stop to think that if I’d left it in the pan, I could have put the booker on again to the “Bake Only” setting.  I don’t think anyone thinks calmly when something like this happens – they just see red, just like I did!)  I then proceeded to finish dinner off.  Steve kept talking about it and we ended up having a slanging match.  He threw a manilla folder at me and when I turned around he had raised his fist as though he was going to punch me.  He didn’t thankfully.  I just told him to go away.  So he left the house and went out the gate.  He didn’t come back after a few minutes, so I went to look for him.  He was around the corner, in the middle of the road, still slowly walking who knows where.  I gently grabbed his arm and asked him to come home.  He reluctantly did, but he was in tears. I sat him down in the lounge and tried to explain again about the passwords and breadmaker issues.  We eventually had dinner but we didn’t have a very happy evening.  (I put the breadmaker on later but it started mixing at 4.40am the following morning which woke us up, but I needed to take bread with us as I had promised.)

Did you know one of the most difficult skills an Alzheimer’s caregiver has to learn is how to become a Juggler?  This link will give you more details about juggling: Managing the emotions of caregiving

 

 

If Steve had an interest other than fishing, it would perhaps be slightly easier on me.  But he doesn’t.  Trying to think of things that he might like to do, is next to impossible.  Every suggestion I make is shot down in flames.  It’s frustrating (and sad) watching him wandering around because he has nothing to do.  It means that I have to try and find him something to do – which takes me away from doing other chores, such as housework, cleaning, washing, ironing, cooking, gardening (which I really don’t bother doing, hence the messy garden!), my blog, other stuff on the computer, going to appointments, having time out, etc etc.  I don’t have the time or the energy to keep him occupied all day every day.

self-care

It must be getting to me because I am now not well.  I have lost my voice and have an annoying dry cough which is very very painful in my chest.  So far the sniffles haven’t started, but I’m thinking they may well do, despite the fact that I’ve had a flu injection.

At least for a few hours today, I am on my own.  Andrew has taken Steve out fishing, along with his eldest son, Jacob.  It will be a good time for all of them – and for me!

I suppose I’d better stop moaning – nobody will want to read this if I continue on!  We do have some good times, just not as many as we used to.  We hardly communicate anymore, and even though I might laugh at something on the telly or something Steve has said, he doesn’t always understand why I am laughing.

I wish I was stronger and braver than friends tell me, I might be able to deal with things in a better way.

cropped-caregiverpic1

Until next time.

Forget-Me-Not   original pattern 2