Readjustment

This is so hard, you find yourself doing the familiar all the time when that is no longer appropriate. Yesterday I had to go to a mall to a shop to buy something I needed. I found myself wandering around thinking 'that would suit Mum/John'. A few times I went to pick up the item before realising that was something I wouldn't have to do any more! Such finality! Moments like this happen all the time and sometimes I find it hard to face. I know this is normal and will continue for ages but it is hard to deal with.

On my own I find it easier to not discuss it with anyone, others want you to be coping well.  It is easier. This is a road we all have to travel.

A very sad day

Today is a really sad day for Christchurch. Today is the anniversary of the February earthquakes. This happened six years ago and many people died. A new memorial garden was opened for the people who died in the CTV building. This is to be a tranquil place in the middle of the city. Although a lot of work has been done in the city there is still a lot more to be done.

I have been thinking today of what we were doing on the day. From that day things just got progressively worse. We weren't the only ones and many people are still in a state of limbo, hard to believe.

Last night Bruce Springsteen played a concert here and sang 'My city is in ruins'. So touching.

I think that I have just used it as a day for remembering all sorts of things, some good, some not so good.

To night a lovely neighbour brought me over some beautiful whitebait patties, a delicacy here. They were from the West Coast and just wonderful. Just how they should be. Proper homemade ones are so superior to ones you can buy, a lovely end to the day.

Difficult post

It is with a heavy heart I am writing this post.

In early February George passed away unexpectedly. As some of you may be aware his name was not really George but in fact was John. He was well known here which is why I used a different name giving me the freedom to tell our lives as we were living it at the time.

John's sons all came to Christchurch for our final farewell to him. I relayed his deteriorating condition in case any of them wished to see him. His eldest son desperately tried to get a flight but was unable to until the Sunday  which was too late but I told John he was coming and I am sure he knew. His eldest son, Mark and his partner, Helen, were a wonderful support and helped to organise a 'celebration of John's life'. Although his son lives in Australia he visited regularly and spent some quality time with his dad during the last years of his life, John adored these times.   John and I had talked about this time so I knew what he wanted. He was cremated and we held a private celebration of his life. We made it a time of remembrance talking about a wonderful and happy life. This was a private celebration where about 50 family, friends, work colleagues and former All Blacks gathered at a cafe we frequented. He would have loved to have been part of it. We had four speeches; John's eldest son spoke of their family life, his oldest friend spoke of their friendship over a nearly 70 year   period, an old All Black spoke about being a player when John was reporting and a work colleague spoke about his career at the Press. (For those of you unfamiliar with All Blacks they are our National rugby team.)

I miss him so much.

Assessment meeting

This morning I had a meeting with an assessor from PMH. She was very nice but whichever way you look at it, it does mean extra work for me. George was asleep in bed while she was there. She was thinking hospital level until she saw me try to do something for him and saw how he resists anyone doing anything and she said to me that she didn't think they would cope at hospital level. I don't either as they don't deal with dementia problems and this can be when they expect to give them medication to keep them calm. I would be really upset if they try to do this. She is therefore recommending he goes to hospital level dementia care which is the highest level of care.

There is another meeting in the morning to approve this assessment. I went to a home with a vacancy at this level but the room had just been taken. Tomorrow I am going to have to see what we can do.

George is very frail and does not sit or stand any more! This decline has been so quick. I feel so sorry for him but that is little help to him. At the moment I talk and sing to try to give him some quality of life (even though my singing is awful!).

One step at a time!

The next step

The doctor did his rounds early this morning and was busy when I arrived arrived. I went through to George.

After the doctor left the nurse came through to me.

The doctor has put in an urgent referral to PMH.

They are expecting him to be assessed at hospital level dementia. There are only two hospitals here catering at this level.

I will need to check these out as well as find out what happens if there is not a vacancy.

Very hot with strong winds here today. This has been playing havoc with my breathing so I going slowly but surely.

Got quite a bit done but it takes it out of me.

Time for a rest

I have just had a phone call and the assessment will be made tomorrow! Golly they move quickly when they want to.

I will have to see if I can get someone to help with the move. I will need a taxi to put the wheelchair. After I have got him in there I will need to take the wheelchair back to the other home. I need to pack up all his clothes, tv, cabinet personal goods etc. these will take me several trips to the car. Unfortunately the drive has been dug up for repairs. I will have to walk some distance with all the things. There is too much for one trip. I am not sure how many I will need to take. It means it is more difficult. At the othe end I need to unpack and settle him.

Everyone has just gone back to work this week so won't be able to help. It will take me most of the day. With my breathing at the moment it will be a difficult job, especially on my own.

Problems continually arise

I was born in the Year of the Oxen and my birth sign is Taurus. I am very stubborn. George was not born under either of these signs but boy is he stubborn too. He has always followed the beat of his own drum and just done the things he wants to do when he wants to it.  He has never argued about he just does it and finally others fall in with him. One of his sons told me that the only things George has ever been on time for was trains and planes as they won't wait!

He appears very fearful of standing or walking. He doesn't sit up himself.  He curls up and makes it very hard for people caring for him. It is taking four of them to get him out of bed. What we are all trying to do is just encourage him to try to stand. He is often most in willing to try and will become very agitated. It is so hard to understand just what has brought this on and whether we are going to be able to get him mobile.

Another worrying pattern which is emerging is his reluctance to eat his meals. Yesterday he would not feed himself. I tried to feed him but he puts his tongue over so no food will go in. I tried to persevere but he got more and more distressed and was almost in tears.he tried to tell me that the food was for the poor children in India. In the end I had to give up as he was becoming distressed.

It is a real worry. If he continues to need four people to manage him he will be reassessed at hospital level care.

Here we have

1. Rest home level - normal and able to move about freely
2. Hospital level - mobility issues or other physical problems
3. Dementia level - secure level
4. Advanced dementia level - secure unit with a high staff level to cope with the extra dementia problems

Our Hospital Board assess all of the residents for the homes. The different homes cater for different levels. If George is reassessed at hospital level I will have to find another home catering for that level.  There are also the problems associated with moving and settling into a new environment. I am extremely worried about all this as it is obviously looming. 

I try so hard to ensure that George has the best quality of life possible but sometimes it is hard to know how to do this. 

lack of mobility

Any actually breaks or damage have been completely ruled out with George which is great news. However we need to get him standing and moving so he does not loose the ability to walk. A urine test has been taken to see if he has an infection leading to his confusion.

Just getting him to stand up is a mission and is taking the four caregivers. He appears to have lost the confidence to stand up. We are not sure of the cause. It could be due to the isolation when he stayed in his room, it could be after the fall or it could be the progression of his dementia.

When anyone tries to get him to stand he curls into a foetal position and you can't get him to straighten to stand up. He tenses up and stays rigid in this position. It is as though he is very scared.

Today I said to him about eating drinking and going for wee walk. He looked at sorrowly and said 'I can't walk'. Unfortunately this was about his only lucid moment today.

This is like a child with Maths, if they think they can't do it they get a block and find it difficult.

Today I talked to the nurse and suggested that when any of the caregivers had a spare 5 minutes that they try to get John to stand. I will do the same thing. We won't walk but just become confident with standing. We can then, hopefully build up from there.i

Difficulties with diagnosis

George had a fall recently which I mentioned in an earlier post. The doctor has seen him several times to keep an eye on him. George does keep complaining of pain but the source of this pain changes every time you ask him. The doctor has been unable to work out exactly what is going on.

I had just got in the car today to go to see George when the phone rang. It was the nurse at the home. The ambulance was on its way to pick him up to take him to get x-Ray's.

Now we just need to wait and see. If he has broken or cracked a rib there is not a lot they can do.  Falls are a real problem. Luckily they often don't realise what is happening and so do not tense up meaning that they often do not hurt themselves.

This is where things can be so very hard as they often don't know and can't tell you what is wrong. Very difficult to know exactly what the problem is.

Adventure on Fantasy Island

Well, although we were awake today, we had a very different reality.

It had taken four caregivers to help get him up this morning. A major problem is he becomes a deadweight and is also unable to help.

Since he was in isolation with the shingles he prefers to stay in his room all day. I am not sure that leaving them in their room all day like that is helpful. I understand the reasons but it was for 2 to 3 weeks. George got quite used to it and is content, at present, to stay there on his own and have people coming in and out.

It is hard to get him walking let alone to the lounge. I have explained to him that if anyone comes to visit him that we will not be able to take him out as we have done in the past. He has promised to practise but no luck today as he was sure he had a sore back.  Let's hope for some improvement.

When I talked about going to the lounge he told me 4 people  jumped on him and started to hit him. Later I asked him who I was. He told me I was a conspirator... I told him I have never jumped on him and hit me and he then said no it was his four wives! Talk about a vivid imagination but at least he was happy.

Sleepy

Today the carers have continued to have problems getting George out of bed however the managed it. He is drinking well but not eating much.

Sometimes I think it is like the seven dwarfs and I never know which one it will be. Today it was Sleepy.

When I arrived George was asleep in an armchair in his room. He was curled over and sound asleep. It took some time to wake him up. Throughout the time I was there he would wake for a short while and then go straight back to sleep. I always chatter about the family and friends. I asked him who I was. He knew I am his wife but I don't think he knew my name. As I chat about people I ask him who they are. Most of the time he is back asleep. Today I was chatting to him about Mark. I asked who Mark is. 'He's my eldest son' said George. Although fleeting a very lucid moment.

I think it is so important to try to keep these memories alive through video, photos and stories.