Busy time

What week! Times like this become a blur. My sisters cleaned out my mother's room at the home. I was really pleases that they did this because, to be really honest, it was something I was not looking forward to. Because I was in there so much in seemed too final to me. My sisters took me in there after the people in the home had it ready for the next resident but it just felt really strange, I felt like an intruder. I guess because I was in there so much for so long. My sisters also organised the cremation which was important we do straight away and I admit I was feeling extremely shell shocked at the time and reluctant to make a mistake which I could easily have done. Luckily they got everything organised. They also went through her clothes which were still stored here at the flat. I hate going through someone else's things, it just seems so wrong so it was good that they did this.

 It was lovely for them to be able to stay together and do things together. This is what we were able to do when Dad died as we all stayed together with Mum. This is very important for families at this time as otherwise you can feel very much apart and on your own. It is a time for bonding and remembering  and of course honouring a life well lived.

We did not have a funeral but we had a celebration of her life. This was something that Mum believed in. She believed that we should celebrate a life well lived otherwise we negated all that the person stood for in life. To this end we held it in a cafe that we have taken her to for many years. It was lovely and we also were all able to toast her with a glass of champagne. She would have loved that. She wished for her ashes and my father's ashes to be interred in her mother's plot. My sisters organised for this to be done immediately after the celebration.

Rest in peace Mum

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.

Learn new tricks

They say those with Alzheimer's don't learn new tricks. Well George did! At the meal table last night I got up to get something for him and then I see urine all over the dining room floor. Checked the valve on his catheter and the dear boy had opened it and emptied it all over the floor!

Very nice. I did not see him do it and nor did he know he had done it.

A bit more steam cleaning quickly done.

If this was a child you would explain the consequences of the action unfortunately that is rather a waste of time in this situation.

Just had a ring from my mother's home where she has been showing signs such as shallow breathing, high blood pressure, high blood sugar level. As Mum is generally pretty much the same this is unusual for her. They rang the doctor who is going round to see her today. This could be a stroke although at this stage they don't think so. I am just reorganising my day to get in there. Times like this become logistically difficult. I need to clone myself. At present they are keeping her comfortable and keeping her in bed. It is difficult because of course she can't tell them how she feels or anything.

Getting things back under control

Got the sheets and duvet cover washed and dried even though it was raining today ( good for the garden ). I used the technique to put the duvet cover back on and I must say that it worked well even though they had two people to do it - it still worked just with one. When I had finished it the duvet was the best I had ever achieved. Looked just like the bought job.

Last night the onesie was used again as well as safety pins in an attempt to ensure that he is unsble to take it off during the night. While George did get up a few times during the night the onesie remained on, let's hope we are back on track. Onesie stays on at night now no matter what the night is like.

Bring back the onesie

Just when you think you have got something organised - believe me you haven't. Usually George wears a onesie to bed as he can't get it off. For a long time now he hasn't tried to take it off and I have no longer had to use safety pins to stop him. It has been extremely hot here at night lately so I thought it would be safe to let him wear pyjamas. All has gone well for over a week. I was lolled in to false sense of security.

This morning George wanders out pulling the night bag ( very full ) with him. His pyjamas had been taken off as well as the pull-ups and both were by the night bag. Luckily I stopped him sitting down. He had soiled himself everywhere. I emptied the bag and started to clean him up when the caregiver arrived so straight into the shower for George while I continued cleaning. Went to the bedroom and found all the sheets and the duvet cover soiled. Got this off and put the first load of washing on. Serves me right for being too complacent.

I have trouble putting duvet covers on the duvet but luckily I have just downloaded a video showing how to do this so I will watch it again before I attempt this. It can be done by one person although easier with two.

Onesie tonight with safety pins!

Hide and seek

You know about the sox fairy who keeps taking one of every pair? We have these ones and currently are down to two pairs of matching sox. Well we have shoe fairies too - yesterday morning six single shoes. Still have not found all of them but found one wrapped in the sheets at the end of the bed. We have a shirt fairy and at the moment I am searching for three shirts that she has. There is no point in asking George as he has no idea that he has had any these things.

The only way I can be sure of knowing where something is, is to hide it ( and remember where I have put it). We do not have a lot of space for hiding and no area is considered off limits to George. It actually takes a lot of time to find the stuff especially if a caregiver is waiting for you to get it. This morning I had all George's clothes ready for the day. His caregiver then told me that I hadn't given him any sox. I knew I had but started looking for them in case they had gone walkabout. They had; onto George's feet.

Non verbal clues

George knows how to show exactly what he wants without saying a word.

Towards evening George often feels it is time for tea. He will go and sit at the table with an expectant look on his face. I admit it often makes me feel pressured.

At the weekend I had made arrangements to meet an old friend who I had not seen for twenty years. We arranged to meet in Brighton which is a pretty quiet place. The Main Street has a 'slow', one way street with judder bars going down. This makes it very safe. There is a park straight across the road and a crossing for us to walk across. George wanted to come so off we went. We sat outside in the sun which was lovely. George ate his cinnamon scone and drank his drink. He was obviously bored with our conversation which of course was a catch up. He quietly stood up with his walking stick and moved over to the crossing. He looked to see if there were any cars and sauntered across the road. He then stood by the car. It reminded me of kids getting fed up with a game and 'taking their bat and ball and going home' when they aren't winning. Naturally I had to leave. Both Mum and George want the attention centred around them and have trouble if it isn't. They need the attention and stimulation. Admittedly there are plenty of people without Alzheimer's who expect to be the centre of attention. It is something you get used to but can be irritating when you are trying to do something for yourself.

They are quite demanding of your time and energy without meaning to be.

Amazing Susan's web site

I have been going through Suan's web site as I can totally relate to her journey with her mother.


She writes in an extremely readable way and is very entertaining and presents the information in a light hearted way.

I certainly admire her at how she has accepted how things have turned out - I found it extremely difficult and just felt 'caught'. I figured I must have been extremely bad in a past life. I guess I still feel like that to a degree as really I don't know what sort of house I will rebuild and in fact whether I will rebuild as I know my life now can go on like this for a long time. There are a still a lot of things I want to and so at times just feel my life is 'on hold'. Reading Susan's web site makes me laugh and also makes me realise that I am not on my own and there are plenty of others out there in a similar situation.


My other blog


I need to start keeping this blog up to date!