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...