Dementia: Nine Ways to Provide Comfort

Seeking The Good Life

Generally people, even family members, don’t know how to provide comfort once a diagnosis of dementia has been made.  You read all sorts of stories of family and friends not keeping touch, once dementia takes hold.  If they do ‘hang on in there’ they may be unsure what to say, or how to help.  I think the following suggestions from a book by Mara Botonis, ‘When Caring Takes Courage’,  are really helpful on this front:Get out of your comfort zone:

  1. A small gesture goes a long, long way. The gifts that matter most are the ones that help me save time and energy and are a treat that I can enjoy at home without arranging care. I don’t always have time to read a book or watch a movie, or take advantage of invites to restaurant meals or spa treatments, but these are things that I can and will enjoy. Dropping off a pre-made dinner, a…

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Dementia: A Care Giver Knows

This is oh so true for so many carers- me included.

Seeking The Good Life

I cannot think of any better words that sum up what it is like for me to be a Care Giver to my wife than the following:

A Caregiver Knows…

Did you ever wonder how much pain and grief your heart could take?

A caregiver knows.

Did ever wonder how strong you are, how many things you can do at once, or how many failed attempts you could endure?

A caregiver knows.

Did you ever wonder if frustration, anxiety, or sheer exhaustion could actually kill you?

All too often, caregivers know this too.

Have you ever cared for someone, who instead of getting slowly better, is slowly fading away, piece by piece… right before your very eyes?

Have you ever felt the despair and hopelessness of that?

Caregivers for dementia patients know this despair and live it every single day.

The remainder of this piece can be found at: A…

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Dementia and love

Beautiful words from Kate, and so very true.

quote-we-remember-their-loveFor Dementia Awareness Month Day 7, I have been attending a Research Forum, with no time for writing and blogging, or even finishing off one of my draft blogs, but this image and quote, from alzheimers.net says it all for me today.

If you are a care partner for someone with dementia, and feeling jaded, over stretched, sad, or burdened,  please try to remember what it is like on our side of the fence.

Your partner with dementia still loves you.

Please, try to remember their love for you.

We [they] do not mean to be a burden to you.

We are living with a terminal illness, that is stealing our capacity and functioning. It is definitely not fun for us either, and having dementia is not our fault.

We are still deeply in love with our care partner, but we are trapped inside our own body, often unable to explain to you what we want, how we…

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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.

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Until next time.

Forget-Me-Not   original pattern 2

 

Language… it is all about respect

Kate has once again hit then nail on the head. It is so true what she is saying.

Image source: Screen shot from ABC online Image source: Screen shot from ABC online

There has been a national outcry by most Australians over the booing of Adam Goodes, the current Australian of The Year, and an elite Indigenous Swans AFL football player. I totally agree with it, and find the booing of anyone, at any level, for any reason in sport, or anywhere, is unacceptable.

In my opinion, it out of keeping with basic human respect, and with spectator sporting standards (not that we probably have any!). No-one deserves to be booed, for any reason.

Even if others don’t see or think it is racist in the current case of Adam Goodes, I totally get why he would feel like it is. If you are used to be taunted, disrespected, and treated with any form of ‘otherness’, including racism, you become super sensitive to everything. It is almost impossible not to take it to heart.

The ‘journalist’ Christopher Jay, in…

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Trials and Tribulations

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We have certainly had some trials and tribulations over the last few weeks!

Since Steve commenced with the extension of the trial, we have had no end of issues.  Is it because he is on the REAL drug?  Is it because of the progression of the disease?  Who knows?  I certainly don’t but I am sort of blaming the trial.  We know he is on the REAL drug this time – 200mg per day, although it is only one tablet at breakfast and one at dinner, rather than two each time.  That in itself has confused him.  We also knew that the previous tablets changed the colour of his urine to a blue-green.  This time it has substantially changed it to a VERY bright blue colour – it’s almost as if we are using one of those things you stick on the side of the loo and when it flushes the water changes colour?  It’s quite disconcerting and it is really staining our loo.  I have to use neat bleach to remove it, and more than once a week.  I think that the blue urine has seriously concerned Steve, to the extent that he doesn’t really understand it, even though he had it before, and the fact that it was staining the loo – so much so, that he was trying to clean it off with loo paper each time he used the loo!

For some time now, he’s been doing what my nana used to do – putting the loo paper in the bin rather than flushing it.  I have tried a number of things to try and change his way of thinking : changing the bin to the other side of the loo – he used the one in the bathroom; removing the one in the bathroom – he started using the kitchen bin …. ewww! I’ve put signs in the loo and bathroom, with words and pictures, saying that the paper needs to be flushed.  But no, he just doesn’t get it.  (Thankfully it’s only the paper from a wee and not the other – I hope he doesn’t start doing that! Yuk!)  I had a big discussion with him about it a couple of weeks ago, which eventuated in a slanging match.  He had an outburst that I have never seen in him before – we were standing in the loo arguing about it, when he said to me “get out you bastard” with a look of pure disgust on his face and tried to slam the door on me.  It looked as though he might hit me, but he didn’t.  Ok, I had probably provoked him, but thankfully I managed to diffuse the situation, but it wasn’t a happy few days.  His outburst concerned me, obviously.  Nothing has changed with the loo paper.  Pamsie has suggested it’s a throwback to when he was a child in Germany (I thought he came over here when he was a baby, but I don’t know for sure) when they apparently used to put loo paper in the bin.  Who knows.  I am now trying to resign myself to the fact of having loo paper in a bin somewhere in the house – sigh!!

On Friday last week, I arrived home after my Zumba class to find the loo hadn’t been flushed all day, consequently it was a deep blue.  I asked him, calmly, if could try to remember to flush the loo each time he used it.  But again, he just didn’t get it, saying it was too difficult and he couldn’t do it.  Again, things got out of hand, and he exploded again, probably again due to me getting mad at him!  We had a late dinner of not very much as I was too annoyed and upset to cook anything much.  We hardly said two words to each other all evening.  I slept in the back room – and not very well, due to the terrible weather we were having then.  On the Saturday, I was still quietly fuming, and pretty much gave Steve the silent treatment all day – I know, not a good thing, but the only way I can deal with it sometimes.  Pamsie and Andrew turned up unexpectedly around 4.45pm, and Pamsie ended up coming back to have dinner with us, after she’d dropped Andrew off at a local restaurant.  Her visit managed to calm the waters temporarily, but I still slept in the back room again.  (Actually the bed is really comfy!)download

On the Sunday he woke me at 8am, and about half an hour later brought me a luke warm cup of coffee.  When I eventually came out to the kitchen, I discovered that he’d poured water into an almost full jar of Moccona coffee, instead of in a cup!  What a waste of coffee!  So I was annoyed all over again.  I sent a text message to Pamsie telling her what had happened, and (even though I know what she said was right) I wasn’t happy with her response (it wasn’t what I wanted to hear), so I didn’t reply.  She then sent another text with something else – still didn’t reply.  A third one came through, then a fourth.  I didn’t respond to any of them.  A couple of hours later she sent another one saying “just checking on you?” – I still didn’t respond.  I just felt that she wasn’t getting what I was feeling and experiencing – because she’s not here to see it all.  I decided to go out so I drove down to the beach and sat in my car reading my book, while getting buffeted by the wind and rain.  After a while I went to a friend’s place, and watched the DVD of “Still Alice”.  It was a great movie, but I shouldn’t have watched it, as now I am thinking about what my future holds!  Pamsie had sent me another text saying she was worried about me, so I responded curtly that I was at a friend’s place, and then I turned my phone off.  I finally went home around 4pm.

I am really feeling sorry for myself at the moment – as you can probably tell!  I know it’s the disease that’s doing all these things for him but I just can’t get my head around the fact that it is – if you see what I mean.  I am at the stage (again) that I just don’t want to play anymore!  I was tempted not to go home on Sunday, but thought I’d better.  It’s all very well having various people, including my mum and Pamsie, saying try to stay calm, repeat when you need to, don’t worry about such and such – but it’s impossible to deal with everything calmly sometimes.  Nobody knows what it is like for me, including Pamsie.  Even other carers don’t know as everyone’s experience is different; everyone’s loved one is affected differently; everyone has a different temperament; etc etc.  I honestly don’t know how I am going to cope over the coming weeks, months, years.

I have slept in the back room for most of the week – I must admit the bed is very comfortable and I have been getting a pretty good rest each night, which is more than I get when I’m in the same bed as Steve.  He snores a lot, if he’s awake he tosses and turns or sniffs a lot, which disturbs me.  I rarely get a full night’s sleep when I’m with him.

We had a hospital visit for a check-up on the trial on the Tuesday.  The doctor (Dr Prowse) saw me first, as I had emailed Kathy and told her of my distress over the previous couple of weeks.  I ended up in tears while speaking with Dr Prowse.  He took notes while I told him about the things that had been happening.  He decided that it might be best that we take Steve off the trial for 30 days, and see how he goes.  I was much relieved to hear those words.  He then saw Steve and went through the testing that he does – not sure what it involves.  We were up there for a couple of hours.  Steve appeared to understand that he wasn’t going to be on the trial for the time being, but when we had dinner that night he asked where his blue tablet was.  Luckily Pamsie was with us and she told him that he wasn’t going to be taking it for a while.

He questioned the missing blue tablet for a few days but now he has stopped asking about it.  However, when he has his Reminyl tablet at breakfast, I have to ensure that he actually swallows it – he was sucking on it the other day and came to me and said “it’s melting”.  I thought he’d swallowed it.  I can’t imagine what it would have tasted like – yuk!  So, now I have to check that he has swallowed the tablet each time.  If necessary I will get him to open his mouth to prove it tome.

daily-trials-and-tribulations-L-e7SWMY

This morning, I was putting my makeup on (to go to work) when I heard the front door open.  I went down to investigate what he was doing as I hadn’t heard him come down to the loo.  I opened the front door to discover him having a wee over the plants at the front of the house!  I couldn’t believe my eyes!  He was standing out there in his sock and shirt – and nothing else!  I said to him that he shouldn’t be doing that and left him to it.  Thank goodness nobody was walking past, and our neighbour didn’t leave for work like she does normally around that time!  When he came back in I said to him that he must not do that and why didn’t he come down to use the loo?  He said “I thought you were in there”.  He hadn’t even come to have a look to see if I was in there.  He also said that he was “frightened” all night as something was banging outside.  I just agreed with him.  There wouldn’t have been anything banging outside – it wasn’t windy last night and there is nothing out there that would “bang”, so I don’t know what he was talking about.  I rinsed the flowers and pathway off while he had breakfast.

I am beginning to wonder how unmanageable he is going to become over the coming months.  It’s a scary prospect – and not one I am looking forward to.  If he carries on with this downward spiral, he will find himself in a nursing home sooner than he needs to be, as I will not be able to deal with all this stuff that’s happening.  It’s far too quick for my liking.  I think I might have to go and see my friend Ellen in the next few weeks – she might be able to guide me a little bit as she has had the unfortunate experience of caring for her husband right to the end of his life, who had Alzheimer’s.

Steve has talked a little bit about the loss of his licence but he still gets very emotional about it.  He still can’t really understand why it was removed.  He reckons he will be able to go and “buy” a licence so that he can start driving again.  I have hidden the keys to the van so that he doesn’t “forget” that he can’t drive anymore – I don’t want him risking anything.  I will be taking him to another GP (at the same practice) so that he can explain the reasons behind the removal.  I saw the GP last week to ask if he would be happy to do the explaining.  I think I might have found an empathetic ear in this particular GP as his wife’s mother has Alzheimer’s – so he knows roughly where I’m coming from and understands a little more than the other GP.  It will be interesting to see how Steve reacts with him – if it’s a good outcome, I will continue to get Steve to see Dr Fitzgerald instead of Dr Buttery.  After all, I will need an empathetic and sympathetic doctor on my side as the disease gets worse and worse.

More often than not he ends up talking “gibberish” in the evenings just before we go to bed.  The other night he was going on about something – still to this day I don’t know what he was on about.  He rambled on and on and eventually after about 45 minutes, I told him to get undressed and get into bed (he’d already cleaned his teeth).  Finally he did, and I could go to bed – down the other end of the house! 96a37f920f5d1e52eaa4b22e0eb001e0

I am hoping that our time away in Loxton will not be too much of an issue for him, and that he doesn’t get too confused.  I must admit I am slightly worried about the loo situation – especially now that he has had a wee in the garden!  I was hoping for a bit of a rest up there, but I can see I am going to have to be “on guard” most of the time.  At least there will be a doctor in the house!!

Until next time ….

Forget-Me-Not   original pattern 2

Simple ways to help a person with dementia

Thanks Kate, for your insight.

IMG_3354After being alerted to this poster The Caregiver’s 10 Commandments via the University of Tasmania’s Understanding Dementia MOOC Facebook page, which is helpful, but also hard to do, I found the article 5 Simple ways to help a person with dementia in my draft blog folder, which I have added below.

Over a year ago, I developed a list of 20 things not to say or do to a person with dementia, and have had a significant amount of feedback telling me how useful it is, and that it is being used in universities, in aged and dementia care providers, as well as in some hospitals.

The list of 5 simple things in the India Times is also simple and helpful.

5 Simple ways to help a person with dementia

“By the year 2015, India is expected to overtake the US to become the country with the largest number of people with…

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