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 ).

Independence

Something I find really important is for me to be up and about before George, this ensures that things go like clockwork when awakes and I can spend the time giving him his breakfast and other things and spend the time then attending to his needs in a calm way. Unfortunately with Mum' death I have been pretty tired and have not been waking early which certainly has not helped. I am now starting to wake before him and it is really easy to see how much difference this makes. Although he was always a late riser now he gets up as early as 4 a.m. but usually he now rises generally between 5 and 6 a.m.

Some of George's caregivers are better than others. The caregiver knew we were going out but dressed him in slippers. I brought him out his shoes and told him to put his shoes on. He pushed one foot into his shoe with the slipper still on. I had to get him to take off one slipper, then the other, then put on one shoe and finally the last one. He was obviously wanting me to do it for him. It is important not to do this and insist on him doing it himself even though it takes me the time to supervise. If I do put them on it makes any indepence quickly go.

Time

All sorts of things take so much time and at the same time I am trying to keep George into a routine and of course he doesn't understand why I need to be doing other things. After the problems with the computer on Monday I had to go to get the computer back. After that I had to visit two banks and prove my identity to unfreeze these accounts - this is not a two minute job. I have another bank to go to next week and have an appointment there. Before going to the banks ( George was in the car ) I bought a milk shake for him and gave him some magazines to look at while I was doing this. He was very happy with this. After this I took him his favourite cafe for a chicken and cranberry pie with a coffee which he loves doing. The wind was very strong and although it was a warm day he was not particularly happy going from the car to the cafe and back we managed it. We then returned home and I was able to the routine until late afternoon when a person from the hospital decided to visit us to show us how to use his new walker. At this time I am generally preparing the evening meal as I need to get this on the table when he is ready, you cannot be very flexible as you probably normally are. I try to run things like clockwork as things are better for him and he is happier when I do. He is a lot better than he was at the weekend.

With Mum's death there are lots of things I need to do and I am trying to make appointments and things in the time I have when he is at his club. I had papers to sign yesterday and was able to have these emailed. I then printed, signed, scanned and emailed back. Takes time too but a lot less than going to do it and a lot less messing around. What did we do before home computers were the norm?

Confusion

George is a lot less confused than he was at the weekend. Attention, a calm and soothing approach is definitely required as well as not trying to rush. This seems to be the same with all of them. I am certainly not saying that it will do anything but it does help keeping them in a warm accepting atmosphere where they can have a quality of life.

Took George to Harakeke but had to go back at lunch time as he pulls the Cather down resulting in great pain. I rearranged him and then he was OK.

I have to be honest he goes on about things where I actually have little or no idea what he means. I may say something like, I am not sure what you mean, but generally I nod wisely and say yes or smile or something of the sort. George is quite satisfied with that and has no idea I have no clue what he is talking about.

Changes

Now that Mum has gone things of course change dramatically for me.

After Mum died everything was organised very quickly and I just felt shell shocked by it all however it meant that all of her daughters were here as well as her two oldest grandchildren and everyone was then able to return to their other commitments.  When Dad died it seemed to be a longer time but that would probably because no one came until after his death and of course time blurs your memories.

I do know that it will make a huge difference to me financially ( from day to day living expenses ) as the cost of the home is certainly not your only expense if you want your loved one to have a quality of living, I admit this has not been easy but it had to be done.  I will have more time as I will not be going into the home to see her or take her out. I won't have to pay for others to go and see her. I won't have to reorganise schedules when one of these people needed to change their day. I will not have to handle her finances. I will not have to take calls from the home about anything that happens. I won't have to be ready to drop everything to go to her if something happens. These things I just incorporated into my life. Carers do these things willingly, without thought. It is only when they are no longer there That you start to realise just what you did. It does leave a huge hole.

Last night I was getting things ready for this morning and suddenly found myself in the garage with a bottle of sparkling raspberry and a bottle of body wash in my hand ready to put them in the car as usual. I realised what I was doing and why so with tears streaming down my face I put them back. Little things like this keep happening and making me realise she really is no longer here. At times like this I go and sit down with my thoughts and just remember her. I always feel that if you talk about them or think about them then they are not truly gone but a part of them is still here guiding and watching.

Stress

When George came home from respite care he was still extremely confused. Since then I have benn trying to keep things very calm and in routine. He does not cope with people rushing around and talking quickly and loudly, mum was the same. I have found that most of those with Alzheimer's are the same. It is better to agree with them and try to divert them rather than treat them as though they don't know what they are talking about or in a condescending manner. Nothing is more irritating to anyone let alone someone who is struggling to make sense of the world. Some people react to stress by aggressively loudly verbally attacking others. It is so unnecessary and achieves very little except making the aggressor feel 'in control', I find this extremely difficult to deal with let alone someone with Alzheimer's. A quiet reasoned soothing voice tone is required.

Today trying to keep this calm atmosphere and giving George lots of attention and the phone goes. Now you may have heard the saying, it never rains but it pours! It is true!

I got a phone call to say that a hacker from China had got into my bank account and was trying to transfer money out. Now I use three different banks for Mum and us. I then had to get on to each bank to stop anyone accessing all accounts and I also rang the police so they could try trace them. Phone calls took me over four hours. These automated desks are so useless.

Obviously a virus, I had been trying to clean mysmartsearch earlier - very nasty. I  had uninstalled the programme which had installed itself and I also had done a virus scan and cleaned the registry to no avail resulting in what happened this morning.

Stress, I felt very stressed. I had to be very careful and still give George attention and keep a calm gentle voice - I have certainly been doing this for over four years. Having no one else to listen to me I can't really do anything Anyway so there is no use worrying about it.

I have got my computer in being cleaned so all will end well I am pleased to say. Thank God I do know what I am doing, despite what anyone else may think, otherwise the outcome may not have been so good.

Result now is that I have got things sorted and George is a lot less confused than he was when he came home on Saturday. Just keep things calm, do things slowly and methodically and everything will turn out OK in the end,fingers crossed...