Such a lovely time

i am having such a wonderful time with the family.

We had a lovely Christmas Day with some very excited kids. That is so nice and something I have been missing so much. Throughout your life you tend to take so many things like this for granted until they are no longer there - saviour every moment as you travel through life, you never know what is around the corner.

I am so loving being with all the family and not feeling alone. I always try to see things through the 'glass half full mentality'. I know this is not always easy but there is always changes going on and we need to adapt.

I must admit it has taken a few days but I am starting to feel more relaxed. Yesterday someone gave me a back massage and boy could I feel the tension leaving me. That will be my New Year's resolution - have regular massages to relieve some of my stress rather than let it build up.

I wish everyone a great festive season..

Excited

George went into respite today. He was quite relaxed about it. For the past week I have been talking about it to him and ensured he understood what was happening. Luckily some people he knows from His club are also in there. He also has people going in to see him.

Came home and got into my packing and doing some tidying up. Just on finished packing and am feeling so excited about seeing others in my family.

Initially I felt guilty about going at Xmas but I realise that other members of my family miss out with me having Mum And George to care for. This will be the first year without Mum and so it is so nice (and would be very important to Mum) that so many of her family are together this Christmas.

Second time lucky?

Not too sure about that...

Yesterday it was pretty hot. When George arrived home from his club he was hot and tired. I had been rushing around all day. Had not expected this one but the rest home rang the night before wanting me to go in and do the admittance for the respite time. As George is pretty much the same as last time I felt it was a waste of time but...

Mine is not to reason why...

Anyway that took a couple of hours by the time I got there and then waited round for the nurse. No one else understands that you don't have the time to muck around.

When George arrived home he was obviously tired and I suggested he lie on the bed and have a 'nanny nap' before tea. He thought that was a great idea.

BIG MISTAKE!

Next thing he wanders back out. No trousers, no pull-ups!

I quickly cleaned him up and put on some pull-ups and trousers and sat him down in the lounge. I then raced through to the bedroom and found

Feces  all over the comforter. Guess what I had to do then?

That is the second time in a fortnight he has taken his bottom half of clothes off. This is a new behaviour which I will need to watch for to stop it before it starts.

Don't ask why

The other day, when we got home from George's club, I was tidying up and getting things ready for tea and the evening caregiver.

Suddenly I became aware that water was running somewhere. I went to investigate and found George in the bathroom. In the shower ( which he had turned on ) was his pull-ups, his trousers and his socks.
He was standing in the bathroom watching.

I turned off the shower, got the stuff off the shower floor and put into the rubbishy or washing machine. I cleaned him up and got him dressed.

We then sat and talked about some photos until he was ready to look through his books. Once settled I then finished off the tea.

I have learnt not to ask George what he is doing or why as he really has no idea.

By quizzing all you will do is make the person more confused or upset, best just to with it and move on.

Don't worry, be happy.

Achieving very little

This week I have had to change George's bed three times so far!!

One of the caregivers, I think, has poor eye sight so I have to go round after him as well, picking up clothes (and finding where he has dropped them). However George likes him which is important.

I do find that he gets very confused some days which makes life more difficult. Because I had to do things today which required being somewhere at a certain time (rather than work on his time) he just goes slower and slower and becomes more and more confused. He hates being hurried and I try not to do it although at times it is necessary. Really it takes me two or three times the amount of time as it does for other people. Today I asked him to sit at the table for tea - he wandered all over the place and did not know what I was talking about. In the end I had to take his hand and lead him to the table. Tomorrow he may be a bit better.

I find that the best way to deal with it is to lead him, gently, to where you want him to be.

Two other factors which may also be contributing to the confusion are:

• respite care coming up
• hot weather

Guardian angels

My poor guardian angels are working so hard at the moment. I am very tired and desperately in need of respite care, this starts on 19 December until 4 January. I really need it. I am making stupid mistakes! For example during the weekend I took George to my parents grave with some lovely roses to put on the grave. On the way we stopped to get petrol. After taking a photo of the grave we did a tour around and George was very happy to go out.

At 6.15 that night the phone rang and someone asked for me. They then told me that they had found my credit cards! I couldn't believe it! After getting petrol I put my card holder in the door of the car so George wouldn't get into it ( he takes everything ). It must have fallen out when we were there. As the caregiver was due to arrive for George I decided to leave him a note and then I would get home about the time he left! All went well except that I took the note with me, luckily George remembered a garbled version of what was happening.

Strangely I took a photo which showed the roses and car keys - not mine. I said to George we would need to go over the next day to get them and find out who they belonged to. As soon as I had the cards I went back to the cemetery to look for the keys but nothing was there. They definitely were not mine as I did not take them out of the car and they do not have that sort of key ring. So strange.

I wonder if my guardian angels tried with this photo to get me to go back and when that didn't work used a lovely woman (took her some wine on Sunday). Anyway I think that they have been working over time.

Last week I had George back at the doctors with a infection on his penis. Also dealt with wet bed and poo on the toilet floor, luckily these things are not as regular as they were.

At night, when George goes to bed he has a movie on and a red wine, he enjoys this. He enjoys his old movies, these are mainly ones which have a lot of singing in them, a favourite is High Society.

Diet

Something I found with Mum and now with George: they like the 'rubbish' food but not so good with the nutritional foods. George often pushes his food around his plate like an anorexic. Not good.  I find it difficult with fruit - grapes just result in a hell of a mess - he spits out all the skins - I get green grapes with no pips, mandarins or oranges he spits out pips and bits and pieces - the only fruits I have been really successful with are pears (cut, cored and peeled), apples (same) and bananas.

Routine

I have found that routine for those with Alzheimer's is so important. That way they know what is going to happen.

A week ago George was supposed to go out for a walk and coffee with a caregiver, she rang not long before to say she was sick so they did not go. I took him instead but...

that night he refused to take his shoes off to get ready for bed and in fact he was determined that he wasn't going to bed as we had to go to his club NOW.

The carer got me in to calm him down (he was very agitated). Finally succeeded.

Luckily this has not happened again. He knows that when he gets into bed he will have one of his old movies and a red wine!!

In the first days I used a whiteboard so George could see what was happening each day. I never found this very successful although I know that some others do. George would not go and read it nor would he when I suggested that he do this.

I am going to take some respite care over Christmas this year and spend it with family. I am SO looking forward to it. It will be a first family Christmas for a long time.  

A down day

Last night George was up and down during the night. This morning I found, in the lounge, a mountain of pillows and clothes on the sofa and chairs. He did not have to get up early (just as well) as the caregiver does not arrive until 10 o'clock. He has slept a lot today and really not been with it. While he is asleep I do not disturb him as he must be catching up on last nights antics - like a teenager!! Took me some considerable time to sort it out this morning.

He is becoming very frail and I do worry about him falling but he has lots of walking sticks around the house as he leaves them in all sorts of places.

Last night the caregiver asked about what the clapping meant and I said I wasn't sure but he did it a lot. It could be

• happy
• telling you to get a move on
• he appreciated whatever was going on
• he just likes the sound of it

Not sure myself, probably a bit of each one. 

Animals and children

Something I have found with both Mum and George is that they love interaction with both animals and children. Strangely children do not see anything unusual in any of the behaviour they display but are very accepting unlike many people. George was not a lover of animals but loves to pat Fluffy Bum.

Fluffy Bum (being a Persian) is not the brightest cat in the world. She loves me feeding the birds each day and gets very excited about it all. Luckily she is not able to run very fast and tends to charge at them like a bull. I think the birds find her funny and it does not deter them from coming for their food. George loves to watch her especially at these times when she is being so active.

The change around

George was very bemused all week and had no idea of anything. I had taped the Springbox v the Pumas game for him but he had no idea of what was going on even though I tried to talk himthrough it. He had no idea of the game or what the teams were.

What a change on Sunday!

When he got out and came through people on the TV were talking about the game. George sat down and said 'we won'.

I put the tape on so he could watch the game. He loved it. He followed it all and knew who the All Blacks and the Wallabies were.

After that we went to Honeys to meet another couple. George was able to tell them about the tours he did with the game and stories about many of the old players. He really enjoyed reminiscing the old days.

Great that he has bounced back although you never know how long this will last.

Enjoy these times

The journey

Each person's journey is different which makes it especially difficult for caregivers as you are not sure what is coming next.

Strangely Mum and George's journey has been very similar.

George has been very confused this week. Often those with Alzheimer's can 'rally'. Mum did each time my sisters visited. George did last weekend with his son. This is great as it gives them all quality time. Afterwards they seem to 'go down' and become more confused for a time and they are also very tired. . I guess this is because while the visits are going on they are the centre of attention and they are going out and about a lot. By the end they are tired and it takes a while to recuperate from that and go back into routines. This is even when the visits are of short duration.

I can certainly see that had Mum not have had her fracture and landed in hospital for a month I would have been able to cope with her at home for a lot longer. So sad that so many health professionals are not understanding about dementia. If something similar happens to George I would also expect to see a similar deterioration.

The up and down world

I am so pleased that George was so lucid last weekend with his son.

Yesterday, after going to his club, George was not sure that he was in the 'right house'. Very confused and got more so during the day. This is a reality that caregivers face - things change very quickly

Great news, I have finalised with the insurance company about the earthquake damage (after 5 years) and so next year the repairs and renovations to our home will be done. With the renovations we are putting in new (disabled) bathroom, this is essential when a person is incontinent. Can't wait!!

A wonderful 3 days

George's eldest son came over from Australia to stay with George for three days.

George's son concentrated on spending quality time with George while he was here. He was very patient with him and George was very ‘with it’ all weekend and took part in most conversations and certainly knew what was going on. This weekend meant so much to George. The first night although he was absolutely buggered he did not want to go to sleep as he didn’t want to miss a minute of being with his son. We spent the whole time out and about (which George loves). Friday we went to Honey’s, then in and George's son saw George's Harakeke club, did a quick drive around in town and then down to the library ending with a drink at the pub across the road. That night George did not want to go to bed even though he was really tired. His son watched a movie with him (George was in bed) and he really enjoyed having him there. 

 On Saturday we went to the Markets at Lyttelton.. George had soup, whitebait patty, and we all had an ice cream (real berries). We then came back through the tunnel to Sumner where George's son spotted a bar which we hadn't known was there. Settled down with drinks and I took some video of the two of them talking. We then went to The Warehouse but George was really flagging by then so I got him back to the car. So then on Sunday back to Honeys after watching the NZ v South Africa game and then a quick drink at the pub before getting George's son to the airport.

During the weekend they  spent a lot of time ‘chewing the fat’ and looking at photos and talking about the old days. 

It is spending quality time like this which is so beneficial to both of them. George's son will always have this time together to look back on and George will remember it for a long time to come. 

I take a lot of time (all the time) talking to him about his family to keep them alive in his memory banks and I will now add the things they did together this weekend to it.

The weekend was wonderful for me too as it is not often  that I have a proper conversation consistently as for the last five years dealing with Mum and George all the time I keep the language very basic so that they understand what I am talking about. 

Such a special time. 

Very exciting news

Just had a message to tell me that George's eldest son arrives tomorrow night to see him for a few days. George will be so thrilled to see him when he wakes up on Friday morning. He leaves again on Sunday so that will give them some time to have quality time together. So important. He stays here with us while in Christchurch so they will be able to go over lots of things together (maybe even watch the All Blacks).

More Rugby World Cup

I recorded the two quarter final games for George to watch today. In the first game George kept asking what sort of a game it was, he simply couldn't understand it and told me that we don't play games like that in New Zealand.

I then put on the Scotland versus Australia game. This was a good, tight game and he really enjoyed this and fully understood that this was a rugby game which was part of the World Cup.

George was always able to tell you what happened in a game from start to finish, that went a long time ago but at least he is able to enjoy a game and then remember enough to have a conversation about it afterwards.

Rugby World Cup

During his working life George wrote a lot about rugby and toured a lot with the All Blacks. He loves to watch the games but quickly loses patience as he has no idea of what is going on. In order for him to enjoy it and feel that he has 'watched' it, I need to sit with him and tell him what is going on - I do not know much about rugby but I simplify what the announcer is saying and that keeps George happy and contented.

Tonight one of George's sons rang which he loved as he hasn't heard from him for some time. It is a year since any of them have seen him. It is important to keep in close contact even if you are separated by living in another city or country. It is important to try to get to see them regularly as before you know it the opportunity has gone.

Making sense of dementia

I remember when Mum was first diagnosed with Alzheimer's. I really did not envision our lives changing much (famous last words). I knew that she needed me to move in and live with her and she also had carers to shower and dress her. However I thought that Mum, George and I would do a big road trip for about 3 months around both islands of New Zealand; didn't happen unfortunately. Everything went downhill "at the rate of knots".

I found that even medical people were not able to tell me that much and I got very confused as some people referred to dementia and others to Alzheimer's. I kept asking what the difference was. A few weren't sure, some said that they meant the same thing and others didn't know.

I read widely about Alzheimer's and figured out:

Thinking of dementia as the universal set, Alzheimer's is one of the subsets. I made this diagram to show some of the forms of dementia (not all). People often have more than one form of dementia, for example George has three different forms.

The reason why people do not answer with a straightforward answer is because there is not one. Everyone is different and their journey with dementia is unique to them.

For carers knowledge is power. You are the only ones who really knows what it is like caring for these people, others may tell you but the reality is that they go home at night and have a social life while you do not.

A lot of what I found, initially, did not make a lot of sense to me as both Mum and George did not fit into the stuff I was reading. Just take the  bits that fit your situation and discard the rest.

Forgiven

Fluffy Bum has forgiven me and sat with me on the sofa last night.

Got an email from a neighbour yesterday to see if George and I wanted to go to coffee so we met up today and had a pleasant time sitting in the sun and chatting.

I have been putting on the World Cup Rugby for George but he is not able to follow a game any more. He is better just talking about it and maybe watching a few highlights. As this was his passion and he had a fantastic memory about the games and players it is so sad to see this sort of thing happening.

George had a lovely day and is still quite 'with it' and able to carry out a conversation at the moment.

The best laid plans

They say 'the best laid plans of mice and men...'

My cat, Fluffy Bum (named after the cat in the book Badjelly the witch) needed to go to the vet this morning as she has started to limp. As George's caregiver comes at 10 a.m. on Saturday morning I arranged the vet appointment for 11.15 a.m. so he could come too (he loves going out). The caregiver arrived half an hour late. He tried to get him done in half an hour but was unable to. I got the cat and put her in the cat box, wall to wall moaning!! All the way there it went on and on. I then had to keep her calm when she came out of the box!! She has an infection in her paw!! Paid the exuberant bill and then the wall to wall moaning all the way home. As soon as she got home she was in a bad mood, out of the box and outside until I had put the cat box away and boy did I get some bad looks.

George was unhappy not to go out so off we went and had a coffee - he, as usual also had a bacon and egg toasted sandwich and finally came home. George takes a long time to eat his food. That was pretty much most of the day wasted. People wonder why but it is due to things never going according to plan and EVERY day is different!

Spring

Spring is such a wonderful time of the year. The monarch butterflies are in the garden and the Godwits have returned. All the flowers are out and looking so lovely. Sometimes I take George to the river to feed the ducks. He enjoys that.

I do find myself rushing to get things ready for the caregivers - each one wants different things and they have their own way of doing things. One that is quite demanding is German lady in her fifties. She is one of those people who always knows better; if you say something she knows a better way of doing it for example, one of those Control Freaks - I actually find them difficult to deal with and I know a few of them. She takes George out for a walk once a week and they go for a coffee. Each time he needs to be wearing particular shoes which she specified and I have to have the following ready:

• sunhat
• winter hat
• heavy jacket
• wind breaker
• light jacket
• water bottle
• gloves
• scarf
• library card (in case they go to the library)
• $10 for a coffee and something to eat
• A book which she writes in about their time together
• Walker - although George normally uses a walking stick she likes him to use the walker when they go out

They are truly set for any weather. 

George is quite 'with it' at the moment. It is times like this you need to enjoy as they happen less and less as time goes on. 

Walkabout

Luckily George does not wander off. This is one of the things that causes many people to need to have their relative in a safe secure environment.

He does like to think he goes out walking. Yesterday he got all ready and went out for a walk. He then hooked his walking stick over a rail and came back in. He continued to do this until he then had 6 walking sticks outside. He then went down to the gate and back.

When he returned he told me he had been

942 steps

Today I asked if he was going for a walk. He told me he wasn't as he had been on this big long one. I was surprised he remembered but...

A good day and night

Wow, we had a great day and night. I took George out for about 4 hours yesterday and also out to feed a neighbour's cat. One of the things we did while we were out was to put freesias on my mum's grave. These were a favourite flower of hers. We went near my childhood home and fed the ducks. A little girl came along and shared the bread to feed the ducks. I can't say the weather was good but it wasn't raining. I must have tired him out and he did not wake during the night - a first for a very long time. He woke this morning 'full of fluffy ducks' and seems happy and relaxed (fingers crossed).

It takes a lot of time to do this sort of thing but I guess it is worth it. Not a lot done at home!!

Next crisis

This morning there was very little urine in George's catheter. I had to call the district health nurse as we had arranged to have the catheter changed on Friday and this needed to be done immediately or the kidneys can start to pack up. The nurse arrived and tried to flush it out but no joy so between the two of us we changed the catheter. Luckily that worked with me distracting and relaxing him while she did it. Really the two of us managed extremely well. I know it doesn't sound much but it all took the whole morning so he has not gone to his club today.

Last night during the sun downing he went out to the garage and started bring stuff inside such as a spare kettle and some other stuff. I was unable to distract him as he had some strange agenda going on so it is easier to let him go otherwise he thinks he is doing something wrong and he tries so hard to do things right. After he went to bed I sorted it out.

Sundowning

George has started to sundown in early evening. I have found the best way to deal with this is to have a routine to have the evening meal and then a small break followed by ice cream. He is happy once he gets to bed with a movie so I try to time everything to dove tail with the times the caregivers arrive. Unfortunately this is not always possible when they are late (up to an hour) so I try to keep him occupied (not always easy). We get there.

Dancing

I have seen that music and dancing are two things that most of those with Alzheimer's enjoy and participate in to a greater or lesser degree depending on what they are able to do.

Two years ago I took George to a afternoon with dancing followed by a high tea. George loved it. Here he is dancing with a school friend of Mum's who also has Alzheimer's. I was reminded of this when I picked him up from the club on Thursday. He had had a wonderful day. They had arranged a singer during the afternoon and many of them (including George) had danced the afternoon away.



Unfortunately he is starting to get frustrated with the language as he has lost so many words and is finding it hard for others to understand what he is talking about. For someone to whom language was such an important part of their lives this must be very frightening.

Catheters

Yesterday a nurse came to the house to change George's leg bag (this is done weekly). Unfortunately she did not push the bag into the catheter tubing properly resulting in them coming apart during the night; result - another wet bed so I had to quickly take all his clothes off, clean him up and put some new clothes on until the caregiver arrived a couple of hours later. Three loads of washing for him today.

His bed must be the cleanest and most aired bed around

Today I had coffee with a relative from Australia who was in a similar situation. We were discussing the cost of rest homes. Much cheaper over there. Here the cost of keeping one person in a home is the total salary a teacher with a minimum of 14 years experience and in a senior position gets. This is just the very lowest basic rate and then other things are also required. This is a lot and then of course, for me,  I still have to live. Unfortunately that is impossible so he won't be able to go into a rest home unless something radical happens. Luckily he is still compliant and non aggressive. Mum's fees were paid for but had I not gifted and paid for so much her estate would have depleted down to the threshold for a subsidy but had this happened I would have failed her and the family.

I guess I could go back to work to pay for this but I would now have to retrain in accordance with the new regulations and all the money would just be going straight to the rest home. Teachers, I also feel, have their 'use by date'. I used to see lots of them who were still in the classroom long after they should have been but they were still working because they had to as they needed the money. This is not good for the children in their classrooms and I have no wish to become one of them.

We do have a govt subsidy here but you need to have a very low level of assets and no extra income to get this. My super puts it out of my reach. My advice to others is to spend or put things into a trust when you are very young. We are taught to save for our retirement and then you spend it all on keeping others in rest homes, seems very wrong. I admit that this was not on my radar and I do feel envy for others I see able to travel and enjoy their families and their lives in retirement. However we just have to make the best of what the cards deal us.

Being organised

I often feel very unorganised but the reality is that you need to be super organised if you are a caregiver. Your day revolves around everyone else-

George has a caregiver to shower him each morning. This is about 9 am on Monday/Tuesday and Friday, on Wednesday and Thursday it is 8 am and during the weekend it is 10 am. Caregivers are often up to an hour late. You need to have everything ready for them, the catheter emptied and to be there in case they need something during this time.

His night caregiver arrives at 6.30 pm during the week and 7 pm on weekends. This means that he needs dinner before then and his catheter emptied as well as everything organised.

The health nurse comes on Monday to change the catheter bag, this can be at any time.... The things need to be ready for her (I keep all this stuff in a storage box).

Each of the caregivers has their own way of doing things and so you need to cater for these. I find that each thing he does during the day means that I have to have out the clothes/shoes that others find suitable for whatever it is. I must write all this down as I keep all this information in my head and so no one else can do it - really there is no one else who is going to so I guess it doesn't really matter that much. However carers do need to realise just how much time and effort that they need to put in to ensure all these things are organised.

A Day in the life of a caregiver....

Each morning I have to make sure that everything the caregiver needs to shower and dress George are all there ready. The clothes in George's bedroom are for him to rummage through as I cannot guarantee that I can find anything in there as he pulls stuff out and moves it round. It is rare to find two shoes or two socks.

I need to get him up and give him breakfast and a coffee and chat to him before the caregiver comes. This takes up to an hour so that he is a bit more alert. After the caregiver goes I may need to take him somewhere or do something with him. Monday the health nurse visits, Tuesday and Thursday he goes to his club, Friday is memory clinic, Wednesday a lady takes him out for a walk and coffee ( I pay for this).

George's club; it is about 10.30 when I get him there and I pick him up at 2.30. Sounds great but takes me half an hour to get back home so a lot of time is spent travelling.

Each morning I need to check the bed to see if it needs changing. Yesterday morning the bed was soiled. Three loads of washing yesterday.

I need to ensure that George is eating and drinking as he needs it. With the catheter he needs to drink quite a lot and he is not keen on water (rather have wine). I am constantly getting him fed and watered.

Father's Day

For George today it is Father's Day. I took him down to a cafe for Father's Day, now I know we go 2 or 3 times each week but I tried to make it special.

After Dad died I made a special effort for Mum for all the 'special days', especially Christmas and her birthday as I was the only one here to do so. It was great when the grandchildren were also here as that really makes those times, having children around.

Now of course it is the same with George. Yesterday he got a card from one son and a phone call from the other son. I will also try to contact the third son for him soon. He really loves to feel that his sons care. I admit it is really difficult when there is no family around and all your old friends have died or left your city. You need to think  of nice ways to make it special and maybe make new traditions.

Keeping occupied

This has got to a stage where it can be difficult for George. He can get tired quite quickly although he still loves a chat.

On Thursday night his cousin who is 102 rang. She has just gone into a home but was living in her own home until quite recently. She has a lot of extended family around who have all contributed to making this happen but now she needs a greater level  of care however the family all visit regularly and take her out. My sister with her in laws was in a similar situation until her mother-in-law died recently. Now the family have all focused on visiting her father-in-law and for visits and trips out. So lucky to have this support and of course it means that the family are all there to discuss and understand what is going on which makes such a difference. When you are the only caregiver resident you may find that others are rather critical of your efforts and of course may know what you should do or be doing. People who are not actually involved on a day to day basis really have little understanding although they think that they do. My great advice is that you can only do what is best for you and the person you are responsible for - do what you know is right and try to let all the criticism roll off you - not easy I know. You will never get an apology from these people so doing worry about it. You are also unlikely to be thanked for what you have done.

Yesterday was the 5th anniversary date of the first earthquake and since then my life has not been good. I went up onto the sand hills yesterday morning to watch the sun come up and reflect on the turns my life has taken during this time. On reading this post I guess it sounds negative and maybe it is because of this. During this time too though there have been moments of great love and certainly an appreciation of life.

Clapping time

Don't know where this one has come from but lately George claps a lot, hopefully it is to show pleasure. Catheter problems arise and I often have to change the sheets. I bless the day someone told me about the Artic sheets as they dry so quickly.

Because of George's incontinence I keep his linen separate. I also have to wash for him daily. I do a separate wash for other stuff.

He continues to deteriorate but then bounces back for a bit however the deterioration is becoming more and more. He certainly picks up when he has someone talking to him in a one on one conversation. I just have a feeling that when he needs to go into a home when our renovations and repairs are done that he will not be at a point where he can return home.

I have been really worried about the financial burden on me. I realise that I gifted one third of Mum's fees for the home as well as paying all her additional expenses needed in the home ( hip pads, shore gel, drinks, chocolate, clothes, name labels for example ) and in addition paid people to go and visit her. I also kept her car which enabled family members to use it while visiting Christchurch as well as taking holidays in the South Island. Costs for the car included warrants, registration all mechanical things as well as various other things such as batteries and repairing anything that happened etc. I did not use the car.  I guess that is probably the cost of the home all up so although I will not be able to do some of the things that I thought I would do in retirement at least I should not need to use savings for all of this so should be OK. Luckily my share of the estate enabled me to recoup the savings I had to use on Mum.

Juggling act

There are times when this place feels like Grand Central Railway Station. This week access is blocked to our homes while they concrete the guttering. It is a real pain as we need to park around the corner. I did this on Sunday but by the next day had lost my car keys, luckily I have the spare.

I am dealing (still) with the insurance company relating to the earthquakes (4 and a half years ago). This is so we can get on and do the repairs needed as well as some slight alterations. This will put in an en-suite bathroom for George. I will really be happy when that happens.

One day this week I had round: two caregivers, one health nurse, one builder and one electrician. Timing these things can be a nightmare. I have something similar today.

This week George has seemed to be more confused and it has taken the caregivers quite a lot of time to shower him. If you ask him about a part of his body he is likely to point to a very different part. I am well aware that when the repairs etc are being done George will need to go into a rest home and there is every likelihood that he may become institutionalized. All I can do is play it by air.

Support

George went in to a home for me to have respite care. Unfortunately when I got home I was not well and it has taken me a fortnight or more to 'come right'. People often say to me that they hope that I have  a good support system. Unfortunately I do not have one at all. All the family live in other places and are very busy with enjoying their own lives. Most of the time this is just the way it is but there are times when it would be so nice to have one of them here to stay a night or two. Unfortunately the respite care allocation is not a lot.

As a child I worried about everyone else especially I worried in case people were lonely or didn't have anyone. As a toddler I went to the gate every day to talk to two elderly people who were out taking their morning walks. I would chat away to them every day and did not even know their names. They loved talking to me...

Poor Mum, everyone who moved into the neighbourhood I went and introduced myself and then invited them to our home for morning tea tomorrow. I then went home and told Mum when they were coming. She didn't have much chance but met our new neighbours this way and the new people knew someone else so I accomplished that.

I have always been able to put myself in other people's shoes but certainly notice that most just pay lip service to supporting others. They also need to stop and think before criticising and try to acknowledge what others do.

Language

Listen carefully to a person with Alzheimer's as they lose language. Tonight George's caregiver was taking something through to the bedroom for him. George wanted to say 'are you carrying that in?' instead it came out 'Gunga Din'.

I often find I can work out what he is trying to say as I have a reasonable idea of what he would have said. The caregivers at Mum's home often used to ask me how I knew what she was saying. As I said to them I guessed the types of things she might say and if I didn't know I pretended I did and watched her body language for clues, I do the same with George.

Assessing

Here, people from the hospital come to the home to assess the people with Alzheimer's. This is only done when the carer gets the doctor to put in a request. I was worried as George was still assessed at rest home level care for respite care and I know he needs more than this.

Basically here the levels are

• Rest home when skills are pretty good and they are able to do most things by themselves
• Rest home hospital level when there are physical needs
• Dementia unit which is secure and the dementia needs are prelevant
• Dementia hospital level when there are challenging needs which require a higher level of care

George has been assessed at dementia unit level. As he was booked in at hospital level for my upcoming respite break we have had to get a new facility for this time. I now need to go and visit this place before I take him there. It is amazing just how much time all these things take.

Another wet bed last night even though the two bags were taped together - oh joy.

Remember you are only human

Yesterday did not start well. George had taken the night bag off resulting in sodden sheets....

I took him to a cafe where we met some other people and one of the men engaged George in one on one conversation which he really enjoyed. Back home he was restless and although nothing outrageous just kept me doing things with him to keep him calm and of course I have other things to do. My patience was wearing thin.

Last night, while eating tea, he kept playing with it and moving it round and round the plate and then telling me he had finished. I kept saying he hadn't and to eat it up. He eats and lot of sweet rubbish food which is fine but I do try to keep a balanced diet for him for his three main meals. In the end I gave up but I was 'sharpish' with him.

He sat in lounge and was quite upset at 'being growled at'. I shouldn't have done it and I know better but...

Remember we as caregivers are only human sometimes

Luckily he is a bit better today but still not one of his better days.

Tomorrow he is being reassessed by the people from the hospital.

When things go wrong

Keep calm...

As I say to George "don't worry, be happy".

On Monday a community nurse came to put a new catheter in for George and unfortunately botched the job. No urine came out of the catheter during the afternoon, only blood! We ending up spending a lot of the night in the hospital getting things sorted. When things like this don't hesitate, as a carer it is important that you ensure that things are going well.

This sort of thing causes upheaval to the running of your lives and although I have kept George to routine as much as possible I have also been mindful of the situation and we have been very quiet today. The trick is to remain calm as if you appear stressed it will not help the situation but in fact make matters worse.

I have also let the powers that be know about the situation. It is important that the professionals dealing with these people do a good job and do not try to trivialize the seriousness of it.

Duvet

As I mentioned in another post I learnt how to put the duvet into the duvet cover. Here is a video showing how to do it.

Another learning curve

In 2010 came our first big earthquake followed in February 2011 by another when there was a loss of many lives and destruction of our city. Between these two major earthquakes ( 4 months ) I had made the change to retire early to look after my mother then my mother suffered a sacral fracture

1. A sacral fracture is a break in your sacrum. The sacrum is a triangle-shaped bone that is found at the bottom of the spine.

and had to go into a home as it was impossible for me to look after her by myself. She had developed great anxieties while in hospital which meant she could not be left alone for a second.

The earthquake destroyed our house and a lot of the contents.

Before she got Alzheimer's Mum ensured that everyone knew what she wanted to have left in her estate. As one of those with an EPA and the only one here I knew that I would need to financially look after her as well as her own income in order to pay for the home, ensure that the estate was as she wanted and that I provide the best level of quality of life for her that I could.

Then came the second earthquake where I lost my home and many possessions.  I was just so relieved that everyone here was OK and felt that possessions meant very little.

It was at this time that I became aware that George too had Alzheimer's.

I also felt really relieved as my sisters and I had an agreement that the money I spent here on my mother they would use an equivalent share over in Australia to buy Xmas and birthday presents for their families from me and in return things I did here was from the three of us. It was great knowing that they had plenty to buy some great gifts for them, their children and grandchildren each year. This was important to me as it meant that the families all knew I thought of them at special times and family is important to me.

I admit that initially I just panicked as I knew that I no longer had a source of income to sustain all this but in a strange way the earthquake gave me the perspective to know what was important so I ensured that Mum had the best quality of life she could have under the circumstances and was able to ensure that her estate was actually in a better situation than she expected.

What made me think of this? Well I have just been reading an article discussing some research about rich people and how they perceive money. It was very interesting and certainly made some valid points such as many of these people lack empathy for the plight of others and feel that everyone can be in their position if they only worked harder...

The research also found that the wealthy are more likely to cheat and lie.



I admit that initially I was very worried about my own future and how I would manage as I knew it was my investments that I was eating into. These of course I had saved for my retirement. However after I got over thinking of my future I decided it was more important to give the two of them the best quality of life I could and let the future take care of itself. I am so pleased I did. I know that I carried out Mum's wishes during her illness and in death to the best of my ability and morally that was important to my well-being as well as knowing she would have been pleased.

Money is not as important as you may think. 

Developing empathy and understanding

Yesterday I went to a seminar at Alzheimer's Society on legal issues relating to caregivers and what they need to ensure are in place. Of course this varies from country to country ( in some places from state to state ).

Before the seminar began a group of us were chatting. While I do not have any family members willing or able to spend a night or two  ( or longer ) others do. This woman was telling us about their daughter who has frequent contact with them but is a bit of a control freak and of tens tells her mother that she is imagining the problems or tells her what she should be doing - the type who is always right. Anyway for the first time she recently s told her mother she would come and stay for the night and sort it out. Wisely the mother went and slept at the daughter's flat. The daughter thought this would be a walk in the park!

Early next morning daughter rang and woke her mother up. She told Mum to come home...

Mum told her that was not the deal and she wasn't coming home until 10 a.m.

Daughter left that day with greater understanding about Alzheimer's and greater empathy for her mother. Prior to this experience she thought she knew all about it.

Another thing I have learnt...

Empathy and understanding...

Caregivers will find that these are often sadly lacking for those with Alzheimer's as it is such a difficult disease to deal with. Some in the medical profession have made it an area of specialty but not many. The same may be said of nurses. A patient with Alzheimer's who has to go into hospital often deteriorates over this time due to the lack of understanding with how to deal with the patient who is so confused and becomes more so often resulting in anxieties which may not have been present before.

Friends and family try to be supportive but often at a distance. Many just want to 'remember the person as they were' and would rather not have a lot to do with the person or limited contact. This does not necessarily mean they don't care but just that they don't know how to react or sometimes simply that they have other things going on in their lives so don't want to deal with it. Others are frightened of the disease due to a lack of understanding of the disease. Of course this is not everyone but unfortunately it does include a large number of the population. Part of this is due to ignorance. It is a disease that is difficult to understand as it is not the same for any two people. I found my young grandson who stayed earlier this year was actually the best. He is 8 years old and just treated everything as being normal especially his dealings with George, they just continued as normal and George really responded to that.

I often find things vary from day to day while at other times from hour to hour. Strangely enough you will also get people who think that they know more about how to manage your life than you do. As it is impossible to know as it changes so frequently this advice rarely holds water. From bitter experience I have learnt not to argue or discuss it but to let them give the advice and feel that they have done their bit and then just go on to manage to fit the situation. Until you actually live with someone with Alzheimer's for a prolonged period of time you actually have no idea. It is no wonder that caregivers can become isolated as often it is only people in the same situation that can understand what it is like and others really don't want to know.

Many people try and have a conversation with a person with Alzheimer's and they treat them as a child. This comes out as condescending and is not appreciated by the person, they do know and do want to be treated as  a normal human being. Mum used to get very frustrated with people treating her like this.

Best way to deal with people is to smile, don't argue and let a lot of the advice roll over you although do listen as some ideas may have merit.

Things I am learning

Being a caregiver for a loved one is a lonely job and you often tend to become quite isolated. Something that is very important is to appreciate the small things. At the moment I am looking after monarch butterfly caterpillars. Our weather is still very mild (and it is winter) so eggs have been laid far to late. I tend to these wee caterpillars twice a day and make sure that they are OK - I even talk to them.

Enjoy nature!

Dealing with the problems associated with incontinence

On George's bed I have a mattress protector (waterproof) with an old towel and more plastic strips. Unfortunately George's bed can get wet/soiled right through to the mattress protector (these work well). This week I had to wash the mattress protector (and other bedding) twice. I am now putting the mattress protector on the bed with the plastic sheeting on top so that if that gets soiled/wet I can spot clean sometimes rather than wash the whole thing (these take time to dry).

This weekend took George to get his hair cut one day and out for coffee and a chicken and apricot pie. He loves to go out each day and really it is easier to do this otherwise he becomes restless and pulls stuff out and generally makes more mess.

I am noticing he sometimes has difficulty using cutlery. Today he carefully cut the pie into about 8 pieces and then started putting them on the table... I quickly told him that they do not go on the table but go into his mouth. I do need to keep an eye on him.

I was able to get a bit done in the garden over the weekend and filled my bin ready for the collection later this week.

On the positive side: yesterday he went to the toilet successfully (by himself) and there was no mess to clean up.

Everything varies from day to day.

The joys of incontinence

Each Monday a public health nurse visits to change George's day bag. These bags are changed weekly.

After the nurse changed the bag she came to tell me that she had not put a plastic sheet on the bed before George sat down. The result was that the comforter was now soiled so I had to wash that.

This morning the sheet was soiled - result was this needed washing.

George has been wearing pull-up diapers for some time now but that does not always ensure that things do not get soiled, you need to be vigilant to check for this. Unfortunately he sometimes tries to use the toilet as well which results in faeces on the seat and floor requiring steam cleaning quickly. I have a steam mop which I keep at the ready. I always keep cleaners and cloths in the toilet at the ready. These are only used in there and are well soaked before washing.

Each morning I take the night bag off, empty it in the toilet and then run the nozzle under the tap in the laundry to flush it out ready to use the next night. I have found that holding the nozzle at a 45 degree angle seems to be easiest to get water to go into the tube.

Confusion

Poor George is often very confused. He will check in each doorway when he is looking for a specific room (in the flat), he will turn to go down the hall when he is on his way to the car (it is the other way). In the car he can sometimes do up his seat belt but at other times grasps the wrong part of the seat belt and jam it. Sometimes he can open the car at the end of a drive and other times he can't and I have to do it.

Every day George has Breakfast, morning tea, lunch, afternoon tea and finally his evening meal. He really likes his food. What I can't fathom is why he leaves a bit off each biscuit (and often parts of other things too). I have explained to him that he can eat the lot but he persists in this behaviour for no apparent reason.

I have learnt to go with the flow....

Birthday

Yesterday was my birthday. As other caregivers will know this doesn't mean much when you are looking after those with Alzheimer's. You always try to make their day special but it doesn't work the other way. George cut out pictures of beautiful women from magazines to give me. So sweet.

George had his club yesterday. On the way to the club I heard, on the radio, about Mt John station. The husband of one of my mother's friends was instrumental in setting this up so I started thinking about Mum and her friend.

I then had an appointment and while I was waiting picked up the paper and lo and behold on P3 was a big article about the husband of another of Mum's friends (now 90) who is giving advice to Nepal over building over there after their awful earthquakes.  I knew then Mum was with me.

Later that day I had coffee with a person who worked for Mum and Dad (it was also her birthday). I felt very much as though they were both there all day.

George continues to deteriorate but it fluctuates day by day; sometimes hour by hour. He can be very confused and an hour later be very lucid. As a caregiver you need to roll with the punches.

Importantance of caregivers

Unfortunately George's main caregiver was on annual leave for a fortnight.  So difficult. I found myself on the phone constantly trying to find out who was coming ( if anyone) and when they were coming. It took hours to sort out and there were times when they couldn't get staff. When a patient is incontinent the carers need to be coming every day, the risk of infection is high especially as he also has a catheter. I spent a day with George in the hospital with an infection. It is also incredibly confusing for George.

He is having more and more very confused days. There are times when he can't find his way around the flat and I have to show him where to go. Other times I need to show him where the table and his meal is. He then likes me to tell him what is on the plate.

Now the caregiver is back I am able to try to try to get some order back as well as trying to get things settled with EQC - very stressful.

Going round in circles

Sometimes George wakes before me, like this morning. He had pulled all the clothes out of the wardrobe and there were piles in every room of the flat. Guess who had to put them away. He actually has no idea why he does some of these things and often doesn't think he has. When this sort of thing happens (and it does frequently) you are better just to say nothing and clean up after them. You often get the feeling that you are going round in circles.

This morning he was very restless (sundowning in the morning!). So after a shower and a nurse changing his catheter bag I took him out to a shopping mall. It is bitterly cold outside so thought that this would be a good option. We then walked from one end of the mall to the other - good exercise. By then he started to say he was tired. We had a cold drink and then walked back to the other end where I got him a cream freeze ice cream. He enjoyed all that and he seems more settled now.

At the moment our regular caregiver is on annual leave so we are having all sorts coming. Each one you need to explain exactly what to do, have everything ready for them and be on hand to help them. George finds it difficult to cope with a pile of different people in and out.

Luckily this all ends next week.

Infections

When someone with Alzheimer's has an infection their confusion increases. Since Sunday this has been really noticeable with George.  I have noticed that before he has the antibiotics each day he will be really confused but soon after taking his medication he is really good. With George it is easy to see when he has an infection due to the catheter whereas with mum the confusion would become more noticeable and then the infection would be diagnosed. When the person is incontinent this becomes difficult to manage and it is really important to make sure that they are regularly changed and that everything is clean. Unfortunately in homes it is not always possible for everyone to be showered every day and so often they are only given a wash.

Carer support

To enable family to keep those with Alzheimer's in their own homes the hospital board assesses these peoplr and provides some help in order to achieve this. George has someone coming each day to help him shower and dress. This also helps to minimise the risk of a fall as well as helping them to be clean and dressed appropriately. George has lost many cognitive skills and no longer knows the parts of his body. For example when I asked him to put a sock on his foot - I handed him the sock. He pulled it on to his hand. As he is incontinent it is essential he has a shower every day. At the moment one of the carers is away on annual leave. HealthCare, who provide the carers, sometimes let me know but more often or not don't. This is really frustrating and I am frequently waiting for someone to appear.

Yesterday, having heard nothing, I rang to find out who was coming today, they were not able to find someone to do it but they hadn't bothered to let me know. This makes life very difficult. UnfortunAnglo these people are oot

Easter

George seems a bit better today but a bit confused. A nurse came round this morning and changed the catheter as well as the day bag. Afterwards I took him down to Brighton for coffe and a chicken and cranberry pie which is his favourite.

Last night I felt so blessed with the best Easter present ever. I was so lucky to have a visit from my Dad. This is the first time he has come back and was so special. Many years ago my grandfather came back, how lucky am I? Dad told me how proud of me he was, how much he loved me and how he approved of everything I have done since January 2001. He knew all I had done which astounded me and he fully supported all the things I have done. He said there was nothing he would change, that I had done the right things which gave me confidence as it can be difficult thinking how you could have done things differently; not a hint of a criticism. He told me that of course he expected nothing less from me - sounded so like the things he used to say to me. I have always felt that Dad and my grandfather are with me steering me in certain directions and Dad said that that was exactly right. I felt an incredible sense of wellbeing and so blessed. Strangely enough a nurse at the hospital that day told me I had angels watching over me...

Today I have been mulling over his visit and everything he said.

Days just fly

Today is Easter Sunday.

George woke up and there was a lot of blood in his urine. I dressed him, gave him breakfast, made phone calls to stop the caregiver and took him off to the hospital.

After several hours George was seen. He was then left again for ages. Finally the decided to use a drip to put in some antibiotics and gave me a prescription for pills. He then had to rest to make sure he was OK before finally, we came home. He is quite happy but as you can imagine I haven't got much done.

Not long ago we were shaken by a sharp earthquake, it felt big but was only 3.8 but was 11 km deep, very unsettling.

No two days are ever the same.

Hide and seek

George thinks everything is his! Today he brought home a magazine the cafe ( where I took him for coffee ) has for patrons to read. I didn't realise until we got home. I will pop it back on Monday as it won't be open tomorrow being Easter Sunday.

I find that I have to try to hide so much if I want to be able to lay my hands on it again. Nothing is sacred. I tried putting stuff in boxes but he just takes things out if those. It is a real problem as I need him to wear particular stuff for different activities, for example he has special shoes for walking and although he has many pairs of shoes it is often difficult to actually find a pair. I find them all over the place - behind couches, TV, chair, in the bed, in the garage, just any random place. Unfortunately these are always singles and never a pair. You actually get to a point when you feel very triumphant when you find a pair. I have to get everything ready for each caregiver which also involves shoes! If I am not careful some things, if not all things go walkabout. I then find these things scattered around the place, sometimes I find them over several days. It also applies to my clothes - I have found George putting ( or trying to ) my clothes including jeans which he got up to his knees and then got stuck.

Heat

We have had a wonderful summer and now are experiencing an Indian summer, just great weather. However, unfortunately George seems to get worse with the heat.

Last night, as I was getting the evening meal George wandered off - he went to the bedroom. He came out with no clothes on at all including his diapers. I noticed that he was soiled so cleaned him up and put more diapers on. I then raced down to the bedroom to see what the damage down there was! Poo all over the duvet cover... Got that off and washed it straight away. Thank God for the beautiful weather to get it dry over night.

And people think I do nothing all the time.

George is still pretty confused today and needs precise instructions, for example handing him a biscuit to eat rather than having it on the plate. Another slack mouth day.

Not an easy day

Something I find interesting is that each of the people with Alzheimer's display a different sign which shows that they will be more confused than usual. With George it is his bottom lip goes slack. Other people who are not as intimately involved probably will not even notice these signs.

Yesterday it was a bottom lip day. After rushing round taking George to 3 different places associated with helping him I had not had much time at home the day before to do the things that needed to be done here. Unfortunately most of it did not happen yesterday either. When George is like this it is easier to do little bits and then attend to his needs. His language was really bad and he had a lot of difficulty getting his needs articulated. One of the things he wanted was for me to take him to the bank to get money. Mum was always obsessed with money too. I can assure you a lot of money goes missing when they have it....

George is like a prisoner and gets 'stir crazy' if he doesn't go out each day. As I needed a couple of things from the dairy we went out. He wanted to go to Brighton so I took him there. There are not a lot of shops for him there but I took him to a 'That's incredible' shop where he decided he wanted a dress up policeman's hat. He loves it so he added that to his collection of hats...

Make the time and effort

Our whole country has been behind our cricket team. They played South Africa on Tuesday with the winning team progressing to the semi finals in the World Cup. Many people took the afternoon off work to either go to the match or watch it on TV. We won and have now progressed through to the semi finals. We will play this match on Sunday, in Melbourne. This time we are playing against Australia. After the win on Tuesday many people here rushed to get airfares, accommodation and tickets in order to go to this game. In other words people can always make an effort and find the time and money to do what they actually want to do.

This got me thinking about life and about how some people take that time and effort to spend time with their parents at a stage while they are still fit and healthy, particularly after the parents have retired. Some feel that if the parents want to see them they can visit rather than the other way round, this means that they don't need to disrupt their lifestyle or need to spend the time or effort to visit. People come up with many excuses for why they can't visit their parents, for example the cost Or how difficult it is for the to organise some time to visit. Often the reality is that they want to do just what they want to do. Be so careful that you don't leave things until it is too late. To be honest there is not much point leaving it until the person is seriously ill or something similar. It is then too late. It maybe that you can then try to salve your own conscious but that is pretty hard to rationalize.

After my parents retired and came back to Christchurch one of their dearest wishes was to have a family Christmas. It is a deep regret of mine that I was never able to organise this. Another regret that I have is that I was not able to look after Mum at home on my own and needed to put her into care. However, of course I do know that I was always here for them and especially with Mum after Dad died when she was at her most vulnerable. I was also able to provide the financial support to enable her to have the extras while in the home to give her the best quality of life I could and at the same time carry out her wishes.  It must be wonderful to be able to think: well I did everything I could, for me I know that I did certain things but regret not doing others.

Watching the cricket we can see parallels. People can find the time and money to do what they want to do.

People must do what their conscience tells them to and it is nice if you can have fewer regrets when your parents go. It is hard when you know that you did not do things when it was possible.

I urge people to take that time and effort to spend time with their parents before it is too late. 

Problem solved

Realised last night that I forgot to go to Nurse Maud to pick up George's diapers so I will need to fit that in today. I also have to take George to see a friend this morning and then to an Alzheimer's coffe this afternoon. I need to stay with him at these things so that is today written off. This is something that caregivers find; most of their time will be taken up with doing things for and with the person. It is really important to keep routines going which gives the person with Alzheimer's a sense of security.

Since putting the onesie on back the front we have luckily had no more problems at night this week ( thank God ). Problem solved.

Our whole country almost came to a standstill over cricket this week. It is great for everyone to get behind these teams. Although George was highly involved in sports all his life he has now lost interest but enjoys reliving games played years ago.

Birthday

George continues to go up and down. Some days he is difficult to deal with due to his confusion. He had his 81st birthday last weekend and I was able to make it enjoyable for him by taking him out which he loves. I made him a large canvas for his birthday with lots of photos on it. One of his friends, from Australia, rang and said to me afterwards that it was like talking to the old George.

Unfortunately we are now back to wearing the onesie back the front as he got out of it twice in the last week resulting in a bed change.

I have a lovely treat on Sunday night when my grandson came to stay for the night.

Sometimes life seem difficult and you feel very alone and when nothing you do or say is right.

Time runs out...

Something I find, as a carer, is that time runs out. It actually takes quite a bit of doing to look after someone like this. You need to make sure that everything is ready for people coming in and out to dress or change catheters or whatever else. As I have said before there is a lot of time spent waiting for these people and also keeping an eye on the person you are looking after. George needs a constant supply of food all day - breakfast, morning tea, lunch, afternoon tea and finally tea. I used to wonder about that in Mum's home as they do the same in there but they seem to need it.

This morning, when George got up he came out to the lounge and announced that he had been to the bank and they had given him 6 months which was good. I agreed that it was good but had no idea what he meant. He kept walking and I asked where he was going and he pointed to the window and told me the teller was there waiting for him and off he went to the window. He then turned around and smiled and said how good it was she had given him 12 months!!  Satisfied he then wandered down the hall while I got him a coffee and breakfast.

Things can be so strange, one minute he knows what is going on and the next he is in the fantasy worlds. Interestingly enough he still has a lot of short term memory and knows everyone.

He is 81 next Saturday.

Bed

George wriggles around a lot in bed at night. This morning the bed was in a hell of a mess. He had taken the duvet out of the duvet cover (completely), got the sheets (queen size) completely off, got another sheet and put that on top.

Don't know about you but getting that duvet inside a duvet cover is a task all by itself...

I am using a technique I saw on YouTube but I had to repeat it several times as I didn't do it quite right and had to start again. As I have to do everything on my own I have to keep going from side to side, i.e. running to the other side over and over. Quite an exercise and took me ages. 

Being organised

I try to empty George's night bag while he is still asleep first thing in the morning which is a help if he takes the two bags apart.

Something which can be very irritating is when George wakes up during the night and goes walk about. Each night I leave out all the clothes ready for the next day so these are ready for the caregiver in the morning. Unfortunately Goerge will take some of these and put them on over his onesie ( more washing results). I often then need to get more clothes ready in the morning. I am running out of places where to hide thing. It is all pretty random making it difficult to plan around, for example other nights he will pull a whole lot of stuff out of the wardrobe, put some on the floor and put some on for the layered look then back to bed. I have also found him trying to put my clothes on!

With Mum being in a home it has cost me a lot over the last four years and now I need to try to recoup. I have a small contract which pays minimum but every little helps. It also gets me out and gives me something different to do.

A messy day

Yesterday started with the caregiver coming at 10.45 instead of 9.00. By the time he had George showered and dressed it was nearly lunch time. Then a nurse came to check on the catheter. All is well there.

Finally I took him to Brighton for a coffee as I had promised (while we were waiting for the caregiver! - bribery). Obviously by then the better part of the day had gone. As I went to get a park I saw a tradesman walking back to his van. As he went past I asked him if he was going and he said he was. I thanked him and said I would back into the park. As he drove past me he stopped the van and leaned out of his window and asked if I was single. I shook my head but that was a nice little boost for the old self esteem.We did have a nice time sitting in the sun and having our coffees as well as George's pie.

Tonight he was looking through his memory book. Unfortunately he carefully cut through a page - he seemed to think a photo of my sister was the same person as an old newspaper cutting he had.  I have carefully mended the book and suggested to him not to cut things out until we have talked about it. He has done this before. This is where it is often hard. There is no point in trying to fathom out why they do things  and also there is no point in arguing about it. Just play along with it....

Being independent

As I have said before caregivers spend an awful lot of time waiting on others. This morning George's caregiver was due to arrive well over an hour ago. George had his breakfast and then becamerestlesswandering around. I was doing some work on the-computer when I heard the water running in the shower. I went in there and found the shower on and him, still in his onesie, standing in the sower. Luckily he had the shower head dangling on theshoerfloor so the only thing wet was his feet. I have had to stop what I was doing and sit with him while we continue to

WAIT

Perfect summer

We are so lucky to be living here despite the earthquakes we had. This summer is perfect. Day after day of lovely weather which I try to enjoy as much as I can. We are lucky with hot summer days as we do not get the humidity many others experience and which I find a killer.

In my garden each year I have swan plants. Monarch butterflies lay their eggs on these plants. The caterpillars decimate the plants.

This morning I had three cocoons hatch into butterflies (all at the same time), very exciting.

After the nurse put the correct catheter bag on George yesterday there were no further problems last night. This morning he was more aware of what was going on and really good. At the moment we are having a lot of fish salads - weather makes these a lovely choice. George loves these and always eats the lot which he does not always do with other meals. 

Something caregivers will find is that they spend a lot of time organizing for the people who come in to assist. For example each night I put out a new pullup, trousers, sox. towel, t shirt, shirt etc for the next day. This is something you need to be super prepared for. After they have been you also need to check the state of bathroom for example George has been known to go to the toilet while in the shower and this may not be cleaned properly afterwards. 

First birthday

Today Mum would have been 88. I have been thinking about her all day. Very sad. One of my extended family members realized it may not be an easy day for me and rang very early this morning. That was so nice and I was extremely touched that this person would have been thoughtful enough to do that. I was very grateful. It brought home to me Mum on the first anniversaries after Dad's death. She was totally convinced that certain things would happen although I did try to tell her that they wouldn't. I spent a lot of time with her and took her out on the anniversary of Dad's birth date. The first Christmas was very hard and she came over and stayed at our place after some coaxing. I really put a lot of effort into those anniversaries to help her have good memories of them and to know she wasn't alone. The first two years after Dad's death I went to have coffee with her each morning on the way to work, this helped her so she did not feel alone and ensured that she had something to get up for each day. Something I am grateful for is that I can look back on the time since Mum and Dad retired and know that I was there for them and did the best I could for them which gives me some comfort. I have often thought how difficult it would be then to know that there was something you knew that they wanted from you but you were unwilling or unable to do that. Some people seem to develop very selective memories so that they don't need to acknowledge their actions. You can always rationalize your actions but you know the truth. I do think that is why I so regret the necessity to place Mum in a home knowing she did not want to be there.  As I said to a family member recently you must do what is right for you because you are the one who has to live with yourself.

Yesterday, at lunch time, I found blood in George's catheter bag. This is a sign of infection I immediately rang the doctor's surgery. We were then there most of the afternoon and finally the catheter was changed and tests done. Last night George got the night bag off twice meaning that I had to change him and the bed....

This morning a nurse came  and found he had the wrong bag on. That was changed and she gave me gel to put on the penis for pain every two hours. I am hoping things go well tonight.

I took George to Brighton for a coffee and I just sat and thought about Mum. I did tell George but of course he is pretty confused with things at the moment. I used to take her to this cafe for many years and it is where we also held her celebration. I just sat and thought about that while I was there.

Rememberance

It really is a week for remembering...

• It is a month since Mum died
• Tomorrow would be her birthday

Sort of a sobering week.

Poor George has been suffering from an upset stomach most of the week. Not nice for either of us however he is getting over it now.

The day that changed our lives

Feb 22 2011 was the day that changed the lives of many people here in Christchurch. Two massive earthquakes struck our city at almost the same time. Many people died when buildings collapsed while others were seriously injured. People suffered incredible losses. In our own case I felt as though I was just losing one thing after another. Just before the earthquake I had retired to look after Mum which was of course the loss of my job. Next I had to put Mum into a home, that felt like the loss of my mother with the associated sense of guilt I felt. Then the earthquake which resulted in our home being badly damaged so I lost the house. My son and their family moved away from Christchurch due to the earthquakes so I lost the family who lived here. A few months later George was diagnosed with Alzheimer's, another loss. With no other family member here it really was incredibly difficult to deal with so much in six months. I certainly felt very alone with so much to deal with. Interestingly enough some people showed little or no empathy. I guess it is difficult for others to have any understanding of how a catastrophe like this can effect your life. Someone said to me, " we've got our own lives to lead", she really didn't want to know. These sorts of attitudes make people reticent to share their lives or feelings with others, I find it difficult to talk to others through a fear of being criticised as I was during this time. It is easy to look in at someone else's life and tell them what and how they should do things.   I have found that I do not value money or possessions. Your values do change doing this time. You also learn a lot about other people through their views and actions. There were many times I found myself quite shocked while at other times I found myself very touched by the caring attitudes and actions of others.

The effects of this disaster are still all around us. Our roads are still being repaired so trips have to be carefully planned, you never know what roads are going to be closed and the stretches that have very low speed limits are everywhere. A real problem is that these change from day to day. The major bridge leading from my home into Christchurch was closed for 18 months and is still under major repair. Many people are still living in substandard conditions...

It is really a week of thinking about what we have lived through.

Poor George

Poor George has been not too well with an upset stomach. Of course this means mess, mess, mess and changing... Just finished changing him again and putting another load of washing out soaking. He is on pills and I am watching his diet but not a lot else I can do. Lots of washing too.

I find that the more I find out about Alzheimer's the more I realize just how little we know about its progression. I find it fascinating how similar Mum's and George's Alzheimer's progressed especially when I am reading about, talking to others about it, researching about it for example, I find that each person differs.

Until Mum's sacral fracture and up until now both George and Mum relied on me and expected me to do things and have things organised for them, they then didn't worry so much about things and they also had each other to do things with as well as people coming to help at times when I was working. Things worked like this for a number of years and ended for Mum when she landed in hospital. She blamed me for that which was the beginning of her getting to the stage of not being able to stay in the home which was such a shame. That was when the anxieties started and she certainly could no longer be left alone for a minute. I can see this happening to George too in the future but it is not something you can plan around. No matter how much you know that going into a home is the only thing that can be done you always feel incredibly guilty about doing it. I don't think anyone who has not been in this situation can understand how bad and useless it makes you feel.

Both George and Mum always had beautiful manners and this appears to be something that they don't lose.I  wonder if those who are normally argumentative and aggressive just become more so when they have Alzheimer's, I suspect so. Actually manners is something that appears to be lacking nowadays, I notice that some people write emails without thought and these actually sound very rude to the recipient although I am not sure that is what is meant. Unfortunately the people writing don't read it nor do they actually understand how rude they can sound. As Mum and Dad always said good manners cost nothing, such a shame others don't have this philosophy.

Neither Mum nor George go wandering which is a help as this creates chaos for many families.

At the moment we are going through the 4 year anniversary of earthquakes that were so bad here. Things are still not that great here and it is going to take a long to get things back to 'normal'. I am still trying to deal with EQC, insurance companies and other things relating to this. Really this tragedy has changed many people's lives here. One thing it certainly taught many people here is how little money and things are worth, they are not the valuable things and that was bought home to all of us.

Fun and games

Last night I found George wandering around in the pitch dark on his walker. I said to him that it was the middle of the night and he needed to go back to bed.

"there's been a terrible accident"

"in Tangiwai" - this actually happened in 1952

I told him that we would find out about in the morning and that the authorities were there looking after things.

"but I have to write the story"

and off he went.

I told him that was OK and off he went wandering around until he finally went back to bed.

Don't argue, just play along with whatever is going on in their head.

Unfortunately when he wandered out this morning he had got the night bag off the catheter. Luckily it was not very full and I was able to clean it up reasonably quickly.

Don't be complacent

Before George had a catheter I was often steam cleaning the carpet all over the place. With the catheter this has not been the case and has been a very positive outcome for me if not for George. I was stupid enough to become very complacent about this. Yesterday I had a young boy visiting and when I went out to  talk to his Mum ( just as he was leaving ) he came rushing out to tell me that the floor was wet all over the place. I rushed inside and guess what? George is down in the bedroom. Leading from the lounge to the bedroom is a trail of a wet floor! George had taken his clothes off and was trying to put on a pair of my trousers! He had also managed to open the valve ( obviously in the lounge judging by the trail ) and wandered around leaving a trail. Got him dressed and settled then out with the steam cleaner.

Lesson: don't be complacent

Literature

When I read Still Alice I found I felt very uneasy as the main character, Alice was also a university lecturer as I was although she was a lot higher than I was. What then totally put me off was that, in her fifties, she got early onset Alzheimer's. I have absolutely no intention of seeing the movie.

Since Mum died I got a wonderful book out of the library about a mother with Alzheimer's. The daughter wrote the book and as she was writing it her parent's relationship was a major focus.

Alzheimer's, a love story

Vivienne Ulman

I found this book wonderful. She talks about her parent's early days in Australia as Jewish immigrants. Her father was an accomplished man who was well known in Australia. Throughout the book she weaves the story of her parent's life together which gives a great insight into both her parents. She wrote a journal during the time of her mother's progression through this disease. She writes letters to the mother who is no longer there and discusses her feelings for the person who is there now. I related to a lot of what she was saying, I think perhaps because of how frequently I saw Mum. She also describes her father and how he coped. I was fascinated and could not think of anyone I know who would be like him. I was also interested in the rest homes the mother had been in. I have to say that the family atmosphere that I encountered was certainly not apparent in these homes. Because it is hard to talk to others about what this experience is like ( it is one of those things that if you haven't actually done it while you may think you know what it is like the truth is that you don't ). Something I really envied was the family gathering and the time together for grieving and adjusting. My family were together for three days after Mum's death and these were very hectic days getting things done. While I know that was long enough for the others it was a lot more difficult for me and of course I then had my insular life style. I found that as I was reading this book I was comparing and identifying with all sorts of things she wrote about. This is a book I would recommend to anyone especially anyone who has been touched by someone with Alzheimer's. Something I really identified with was her descriptions of who her mother was and who she became. Although we were not Jewish there were a lot of parallels in our mothers.

In and out

We have comings and going today; the morning carer for George's shower, later came a nurse to change George's catheter bag and then this afternoon a guy to go over some exercises with George. All went well, just as well that I have got George quite used to doing what I tell him, he never questions it and just relies on me telling him what is happening and when. I talked to the nurse today about some plaster strips which have a valcoe across the top. George mucks around a lot and somehow pulls the tube down and can get in intense pain which means I have to carefully get a plaster off and rearrange it, the valcoe one makes it easy to that. She is dropping some off to me tomorrow. Despite these people I was still able to keep routines going so all is good. George has also been walking up and down practising with his walker!

I am meeting the lawyer tomorrow. They had organised this meeting and then sent me an email to say that a paper that needs to be signed needs a death certificate which we do not have yet. They went on to say that it could be signed by someone who had been at the funeral ( I assume where the body was ) and of course we did not have a funeral or ( and this one stopped me in my tracks ) someone who had seen her after death. I just sat for ages before I replied! I hated seeing both my mother and father's bodies. It is so final. They are not there. Finally I emailed back that I could do it but I have to say it was not a good feeling.

After that I got on the web and booked myself a week's holiday on the Gold Coast at the end of July.

A good sleep and plenty to eat

George had a good sleep last night and did not wake up until 8.30 this morning which is extremely unusual for him these days. He is having a good day and is very lucid. At the moment he is talking (on FaceTime) to one of his son's in Australia. He loves doing this although he needs to be reminded that he needs to stay in front of the iPad and not move around (I wouldn't dream of letting him carry the iPad around). He has also been wandering up and down the flat today with his walker - it is his exercise he tells me.

I took him down to Brighton while I got a couple of things done and he loves doing this. I have got him 3 milk shakes a lot of biscuits (for morning tea) and two ham rolls for lunch.

Mum was the same - they like what they like and won't eat something if they don't like it but boy can they put it away.

At the moment we have plenty of monarch butterfly caterpillars in the garden and boy can they eat!! The remind me of George and Mum and also a great children's book 'The Very Hungry Caterpillar'.

A normal day

The lovely weather is back again after the southerly yesterday so that was great. George had a good sleep last night so he is not too bad today. I do find that I need to give him food and drink at regular intervals throughout the day. This keeps him happy. I am not sure why, but eating biscuits or some thing similar he eats it all except a bite sized piece or two from each biscuit. . Maybe he thinks he is supposed to. Plates therefore are left with several bite sized pieces on them. I have to continually stop whatever I am trying to do to get him the food and drink as he is not capable of doing this.

He has a cousin who is now 101 and has been living alone and looking after herself until now. Her daughter rang this morning and said that they had put her into a home. She has been in hospital with some physical problems although she does not have dementia. She is really upset as she did not want to die in a home, it is such a shame as none of the family are willing to help with her care, very understandable as they have their own lives to lead. It certainly made me think about the guilt I felt, and still feel, that I was unable to keep Mum at home on my own. A lot of people do not take this step if there is anything else they can do.

One of my sisters got a speeding ticket driving Mum's car while they were here. This time I am writing in to try to get out of it as last time one of them got a ticket it cost me $200.

In between getting George's needs met I have been able to achieve quite a bit today! I took him to Brighton for a coffee and pie. I have changed his bed, I have done some gardening including planting yams which I thought would be lovely to have when one of the sisters was here, done two lots of washing and some tidying up ( that doesn't last cos good old George then pulls stuff out all over the place - I can but try ).