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
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.
Now to the downward 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.
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.
Until next time.