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.

Gene Wilder

So sad to hear today of Gene Wilder's death at the age of 83. I loved him in films like Charlie and the chocolate factory. I confess I had not realised he had Alzheimer's.

Today I also read On the Day I die .

This is on JOHN PAVLOVITZ's web site.

It starts:

On the die I day a lot will happen.

A lot will change.

The world will be busy.

On the day I die, all the important appointments I made will be left unattended.

The many plans I had yet to complete will remain forever undone.

There is a lot more to give us things to reflect on.

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.

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.

Mum

Mum died on Monday morning while my sister was with her. After my sisters arrived they came to the home and took over being with Mum. That was to ensure that she was not on her own at any time.

After four years is finally at peace. It is a time when I feel so relieved for her as well as an overwhelming sadness as she was 'me mum'.

In my family there are three girls. While my dad would have loved a son he got three great daughters and then three grandsons as well as three grand daughters. We were lucky as my parents did not have favourites. I remember asking mum about this and she told me that she loved each of her children equally although maybe differently as they each had different personalities. I remember when I became a mother a lot of things like this made sense and I understood what she meant.

Death is a time when people react differently. Some people feel that they are under pressure which is a very normal reaction but it is important not to take it out on other family members - work together; remember that this is a time to come together and work together. It should be a time for remembersnce to celebrate a life well lived, it is not about anyone else however it is always difficult as you are often unsure over whether what you are doing is the right thing, all you can do is your best, we all make mistakes.

Because of all that has been going on George's routines are way out. I have been dashing around with things relating to Mum and the rest of the time have been here on my own with him trying to maintain routines, not very successfully. My sisters are together in a motel which is near my mum's home. George has been getting very confused over this time so I have arranged to take him in for respite so that I can concentrate on mum and what she would want. I take him there this morning. My son arrives this afternoon and is staying with me so it will be so nice to have someone to talk to about things.

We are not having a funeral but we are having a celebration for her to celebrate a life well lived. We have invited people who were important to her. I am sure she will love this.

I think that what everyone has to do at anytime what their own conscience tells them is right. As mum would say to me, at the end of the day you are the one who has to live with what you do or don't do, no one else.

Poor Mum

It is heart-breaking to see your mother in this condition. Apparently people have been known to last for up to 2 weeks. It is hard on her and hard on you watching it.

My sisters are here and have taken over sitting with her all the time. I go in a couple of times a day to see her. I do not know what she is aware of but I am sure she knows we are there and she loves touch and reacts to the sound of our voice.

Death is a very difficult time for anyone and all each of us can do is what our own conscience is comfortable with. I have always gone with this. When my father died I knew it would be a difficult time for my mother so to be alone in the house so I decided that I would leave home every morning early enough to go to her on my way to work and have a cup of coffee with her to help her get through this. I know that I did not HAVE to but I would have found it difficult to live with myself if I didn't do it. I also felt that I would be letting Dad down. Mum did mention once that she had not felt alone because of this.

I took George in with me today and put him the lounge with a coffee. On the way out he wanted to know 'where the lady of the hour' was. I wonder if he thought it was her birthday, not sure on that one.

A difficult time

After I wrote my blog yesterday I took George to his memory group and arrived at Mum's home by 10 a.m. I took her in a milk shake as I thought I could feed her that with a spoon. Unfortunately she had suffered a major stroke and her left side was no longer working and she was not able to swallow. One of the staff had the milk shake. I sat and stroked her hands and face with lavender oil and a homeopathic remedy. I felt she knew I was there but that may have been wishful thinking.

I collected George at lunch time and took him home gave him lunch and settled him with a DVD, afternoon tea and photo albums. I let a neighbour know so she could look in on him. I rang my sisters in Australia and they organised flights to come straight over and a motel by Mum's home. I went back and sat with Mum for the afternoon. The doctor came in and said it was terminal and has given her drugs for pain and anxiety. Our main aim now is to keep her pain free and as comfortable as possible. Luckily she has a living will with her wishes in it so any sort of treatment now is out of the question. This is such a cruel end and certainly makes one query about euthanasia. No animal would be made to suffer in this condition. Unfortunately Mum's heart is strong and she is a fighter which is to her detriment just now.

Many of the caregivers in the home came in to give her a kiss or a cuddle which was lovely. They regard her as a member of their family.

I returned home to give George his tea, change and clean him and get him ready for bed. I put on a movie for him and hurried back to the home where I stayed until about 2 a.m. When the two sisters arrived. I came home but had difficulty sleeping.

We have agreed to ensure that Mum is not alone at all and are doing shifts. George is blissfully unaware of the reality of the situation although he knows what is going on. I have to ensure all his needs are met before I leave. Luckily he does not go away but I do know I will come home to an unholy mess. He pulls things down from the top of the wardrobe, moves all his shoes/slippers to the middle of the lounge, pulls out and cuts up pictures and photos for example. I guess it is a small price to pay. How lovely it would be to have others to help with some of this.

Funeral

George was pleased to go to his friend's funeral yesterday. One of the pictures on the back of the Order of Service showed a picture of four old friends including George who is now the sole survivor. A PoerPoint presentation was played before and after the service which included a lot of photos of the group of old school friends who had retained close contact until recent years. His wife told me that they had been looking at rest homes for him so he was lucky to go before that became a reality. He had Parkinson's disease with associated dementia.

Old friends

George and three others he went to school with have remained close friends over the years. We found out yesterday that one of these friends has just died. He had Parkinson disease but was still at home. This is the second of the four in the last couple of years. The other one now. Lives in Tauranga. He was the one who luckily rang to let us know of this death for which I am very grateful as I did not look at the paper and we may have missed it. This made me realise how important it is that old friends are notified at the times. George would have been devastated if he had missed the funeral. George is very upset about this and I will take him to the funeral on Monday. There are others who George went to school with who he hears from regularly, one lives in Perth while the others are scattered around. Unfortunately most have now passed on.

It was very hot here yesterday and I have found that the hot weather tires out both Mum and George. After I got home from seeing Mum yesterday I got George some lunch and a milk shake and then he decided to go to bed for a nanny nap. At the home I was not able to wake Mum up for very long. When she did,briefly, wake up her eyes were not seeing me or her surroundings but were focused on something we can't see.

Death

From The Press 17 November 2014



Took George to the bank this morning (he loves to go and chat to the ladies there) where he gets out money for his wine. One of the tellers told him Binnie had died. This person was his old editor on the Press. He came out to the car and told me the editor of the Press had retired so he got some right. He wants to go to the funeral which is on Wednesday at the cardboard cathedral.

George has been quite confused today. When he was going down the hall to the bedroom he looked in each door to see if it was the right one!

Eerie

In my mother's home was a woman named Christne. Her husband visited regularly a couple of times each week (he regarded staff there as his family) and both he and I would be at the home during Christmas dinner. He then went to family for the afternoon and then tea. He had a heart complaint and had been in hospital several times (staff would go and visit him there) and had been hoping for some time that she would predecess him as he was worried that she would not have regular visitors. We have ensured that someone sees our mother every day and she has a massage once a week. While I do pay people to go to see Mum it is worth it as having visitors provides a quality of life.

He died on Friday. Christine had been very ill for over a week and her son had been in to the home regularly during this time. The day after he died another of their sons had just flown in from his home and went in to see Christine and he told her that her husband had died and that she could now go to meet him. She appeared to understand and he had seen recognition in her eyes. 5 minutes later she died.

There is so much we don't understand.

Death

Two people from Mum's home have died in the last fortnight. One, had no near relatives (his wife had died earlier) and some old neighbours had his EPA and visited him regularly. He was often upset and would sit and cry. The other was an attractive woman with four children. I met two of them visiting their mother. One of these was a son who had returned from overseas last year when he knew that his mother's days were numbered. He made the decision to stay here for as 'long as it took'. The children went in at tea time to encourage her to eat her meal. Having all her children here had really given her a boost (she had been extremely close to death a year ago). I was in the day before and she sat at the table with mum and I always gave her chocolate and had a chat. She was just the same that day and went to sleep that night and did not wake up. Certainly a lovely way to go for her.

The big thing is that her children know that they all did as much as they possibly could and were there for her. I am sure that they have no regrets. I know that when my father died I was so pleased I was with him and had been holding his hand when he went to sleep.

 I know that often mum doesn't know whether I am there or not but I would feel guilty if I did not go in and that was a day when she did know. I think it is important that people do what they can so that they know that they did what they could. However having said that I know that I will always carry the guilt of putting her into the home even though I do know that it was my only option at the time. Frankly putting her into a home had never crossed my mind as I thought that I had organised things so that would never have to happen.

Now I am in the unenviable position of having to do the same thing sometime in the future with George.

Loss

I lost my cat this week which was very distressing. I was not going to  get another one but realised that I need one - someone I can talk to and love which does help with the isolation I can feel at times. I was lucky to get one who had been with a elderly woman who had since died so this cat no longer had a home. Obviously she needed a home without other animals or children. She is settling in well.

George is pretty much the same. He loves to socialise so really doesn't like just staying home which frankly I need to do a bit more to get the house and gardens done (as well as trying to deal with people re the property issues) - while I do this he will slump on the couch and go to sleep.

Something I have found with those with Alzheimer's (both Mum and George anyway) is that when they want something they want it now... I have therefore found that no matter what I am doing I need to stop it and attend to those needs first.

George has been losing language and when he is describing something he uses his hands:

e.g. he was describing something to eat

long and green thing (showed a length with his hands)

Me: Bean
no
Peas
no
Asparagus
Yes that is it

I find more and more I need to guess which is something I have had to do with mum for ages now. It can get very frustrating for them and in particular mum would get upset if I didn't know what she wanted to say.

Another thing is follow you around, talking (and wanting a response), while you are trying to get work done. This happens frequently - George loves socialising...

Christmas season

This Christmas season has been rather busy as my mother's home has been shut for the last three weeks to visitors due to an outbreak of novo virus - visitors can go in but at their own risk. The other people who usually visit mum are not going in as they have children who they do not want to get the virus.  I have therefore been going in every day.

As George has his own toileting issues the last thing he needs is to catch that so I have been going on my own. The other residents are not having visitors so I appear to be the only one in and out. Mum had a small amount of vomitting initially but has been fine ever since.

With me not being there all the time and without his club etc George has taken himself down to Brighton and bought wine for himself. Such a shame as he was doing so well.

His sister died in England on the 12 December which has been a real shock for him. We wrote a letter to be read at the funeral and I made a PowerPoint display as well. The funeral is not expected to be until 7 Jan which seems a long time.

All of George's sons contacted him on Christmas day so he was really excited about that and told me (many times) what they said.

I just hope to get things back to normal soon.

Another good day for George

Took George to Sumner for lunch. It was one of the Grab a Deal vouchers I had purchased. George loves going out all the time. He had an open chicken and bacon sandwich which he enjoyed.

I have been reading some books about dealing with early stage dementia and will start putting up some ideas for others in this blog.

One of the old men at mum's home had been refusing to eat and drink and died towards the end of last week. It is very distressing to see them like this and it makes you wonder about letting them have to end their lives like that.

It never rains but it pours

This morning when George got up I told him that Mark would be here soon to help him dress. He told me that he was off to Wellington to the Rugby Union. Luckily he seemed to forget that conversation pretty quickly.

I went to the funeral this afternoon and was very pleased that I had gone as Mum used to stay with some of them when she was at high school and so they were pleased to have me there as Mum's representative.  It was very sad but it sounds as though she too had dementia and was getting to the point of needing to go into care and so took this way out - very understandable but quite hard on the family.

When I got home I found George had been to Brighton to go to the coffee shop for toasted sandwiches and coffee. When he got home he had got out a whole heap of stuff which is all over the place so guess what I will be doing tomorrow morning - we have a visitor coming in the afternoon. 

I had a ring tonight from one of the people we pay to go and visit mum each week and unfortunately she has had a car accident and will be out of action for some time - she is not hurt but does not have the transport. Mum needs to have someone going in each day so I will need to take up the slack although I think I will try not going one day a week and see how that goes.

funeral

I have been in contact with the family of the person who has died to find out about the funeral. It is on Tuesday so I am reorganising myself to go to mum tomorrow.

The lady who died was 83 and she commited suicide. It is so awful to think of people doing this but mum often speaks about wanting to do it. I guess it is up to each person and we can't judge them for making the decision but it is very hard on the family left behind.

George has been having a wonderful afternoon with his old friend which is lovely as he just loves chatting away - so does mum. Those with Alzheimer's just love the one-on-one attention however it is very hard to provide that all the time which is what they like.