Wednesday, December 31, 2014

It doesn't take long

George has talked flat out since we left the home, I think they get quite lonely as they all sit in their own rooms a lot.

I quickly had to get back into the habit of getting him things to eat all through the day. He quickly made a lot of mess with food all over the floor and spilling drinks. I do try to keep a mat under him. He does try to go to the toilet but is unable to clean himself properly. I go through a lot of plastic gloves and baby wipes. To help keep baby wipes from drying out put a bit of shampoo in the opening and some warm water, seal back up and then shake around to soak all the wipes. This works well. I go through a lot of these.

George was looking through some photos and was looking at a photo of Dad. He said, 'I really miss your father'. They did get on well and used to tease each other a lot. We had a lovely conversation about it, so nice.

Home again

Got Gearge from the home this morning. Something I really notice about the majority of rest homes is that the residents spend a lot of time in their own rooms on their own. I contrast this with Mum's home where they are all in the lounge and the staff are constantly interacting with them; this is something I value highly.

On getting home we have looked at some of his memory books. This is something I try to do a lot in an effort to ensure that he recognises these people even though he doesn't see or rarely sees any of them. He is now starting to ask me who some the people in the pictures are. Today he asked who one person was? I said, "who do you think it is?' He then said 'he's a bad buggar'. I asked why and he said, 'he tells bullsh....'. There was a pause and he continued, 'he tells lies.' He was very pleased with himself for remembering who it was. I must admit it was very funny and he was almost shouting it when he remembered that, very excited he was.

 It is important to keep looking at pictures of family members and friends and to talk about them as if they are no longer in the person's life they will soon be forgotten.  He does remember the friends he has made at his club which is great.

He still has a bladder infection which I need to keep an eye on.

Tuesday, December 30, 2014

Lesson learnt

Facebook has its uses but I am very careful about any photos or videos I put up. As you will have seen I do not put up videos or photos of George on this blog as I do not want others to ridicule him in any way. There are photos of George on there, by others, and comments about how he looks now which are certainly not complimentary and mention such things as how he has aged and was using a walking stick. I would not like George to see this. While I don't show him things like this I don't like seeing people doing this sort of thing. Facebook. I would never dream of putting personal comments about a person out there for everyone to see although so many these days think it is acceptable. Unfortunately Facebook is not secure and I am not a fan of putting many photos on and certainly not photos of others. People are welcome to put up photos of themselves.

I found a lovely old picture of George's grandmother which I scanned and emailed to family members; guess where it ended up. I won't be doing that again. Very sad as I have been making small videos with George talking about various things in his life and was going to edit and send them to the family but don't want them ending up on the web.

Papers

George (and Mum did the same) is constantly cutting up photos sticking them on top of each other, cutting bits from magazines and newspapers etc. While he is away I have been going through some of these bits of paper and throwing out ones that are of no importance or have been destroyed (by him). I found a nice photograph of his grandmother which I have scanned and sent to his family members so I hope that they enjoy that one. This way they all have a copy. Unfortunately those with Alzheimer's often destroy a lot of these things, not because they mean to but because they love them to bits.

Sunday, December 28, 2014

Visiting

As a child I always worried about everyone else and especially about people being lonely and feeling on their own with no one to care for them. I find that I feel exactly the same at this age. I know that one of the people whose wife was in Mum's home, worried dreadfully that if he died first then no one would visit her. I worry about that for George as really the only person he has is me. Mum is in a similar position although people have been visiting her every day since she went in to the home. I am not sure if this would continue if I died or not. Also her other daughters have come to visit from Australia several times each year. Even though I am no longer sure how much she understands I am sure that on some level she is aware that some one of her 'very own' is there. We were very concerned that she never felt that we had dumped her there.

Today I visited George and we chatted and had a coffee. I also took a Christmas present to a friend of Mum's who also has Alzheimer's and is in a home. She never had children and her husband died many years ago. I have been feeling guilty as I haven't been to see her for a while. Another cup of coffee and a chat. I will try to see her again soon as she was so excited.

Saturday, December 27, 2014

Memory

Memory is a funny thing. I am lucky that I have been blessed with a great memory and can go back to when I was a very young child. These memories are clear and factual - over the years I have checked up on these. Some of my friends from school days will often ring me to ask about an event or a person which they have no memory of but I will be able to fill them in on it. It also means that a lot of the time I know when people are not being truthful as I remember about whatever I am asking them. And of course some people have very selective memories where it is to their advantage. It actually took me a long time to realise that others don't have this ability to remember so much. I am hoping it will hold me in good stead in the future.

Something I do regret is not asking Mum and Dad more questions about their families and their lives. I often did not listen carefully either.

George had a good memory for the All Black rugby games and has retained some of this.

Something I find so sad going in to the home to see him and going into the home to the home to see Mum is how some of the residents have few or no visitors especially around Christmas time. For many it must make them feel that they have just been dumped there and that their children don't care; very sad.

Thursday, December 25, 2014

Respite care

I took George in to respite care on Wednesday. The people at the home are monitoring him to see if he needs a higher level of care. We had a long discussion about his condition. They will let me know how things go.

Yesterday, Christmas Day, I went to Mum's home and then I went to George's home. He had wanted to stay in bed and they were just about to get him up and dressed for Christmas dinner. He opened his presents. I had got him a big hat box filled with memorabilities about Audrey Hepburn and a set of DVDs. I was so thrilled to find that in a shop as I had never seen anything like it before and she is one of his favourite people. We were lucky enough to meet her many years ago and I took photos of the two of them having a long chat. He got presents his son sent which included some photos which we put in his blue memory book. I left him relaxed and cheerful as the staff were taking him in to have a shower.

They are going to put on a DVD for him later.

Monday, December 22, 2014

Sleep

George needs lots of sleep. He goes to bed about 7.30 at night and I put on a movie for him. He is generally asleep before 8.30.

Something the doctor and I are wondering about is the mini strokes. Obviously George has been having these for many years which is what has caused some of the brain damage. There was never any sign of these which is usual. What is unknown is if he is still having these which is likely. I wonder if the days when the bottom lip is slack if this could be a sign. I suspect this could be so.

At the moment he is very confused and has all sorts of problems. He really has no idea of what is going on.

Doctor visit

Had to take George back to the doctor today she has given him some more medication and taken a urine sample. His blood pressure is extremely low which would explain why he is tired and lethargic but she too, is unsure whether George will improve or whether he is indeed on a rapid downward path.

A nurse came in and changed his day bag. I felt very sorry for her as George had soiled his pants and it was all over the catheter. She cleaned him up and changed him for which I was truly grateful. One less thing for me to do!

Sunday, December 21, 2014

How much longer

This morning I had a lot of trouble getting George out of bed. Yesterday George used a walker frame all day. This was his own choosing and just using a walking stick did not seem to be enough. He is now using a chair which belonged to his mother to sit in as it is easier to get in and out of.

The Christmas season is always when crisis situations arise. I am so thankful he is going into respite care for a week.

Today I went in and drained the night bag and took it out and cleaned it. I then went back and it took about 15 to 20 minutes to get George sitting up. He is now in the lounge with me and has had his pill, a coffee and some fresh fruit. He has now been using the walker to go up and down the length of the lounge. He is slowly moving more easily. I will need to try to keep him moving today.

Saturday, December 20, 2014

Eating

George has been struggling using a knife and fork tonight he had no idea how they worked and ate with his fingers - great mess. I will need to thin of finger foods for meals.

I also gave him an ice cream today, most of the chocolate ended up all over his clothes.

Slowly getting there

George is definitely going downhill. Today I put some sandwiches on a table beside him but he didn't know where they were. He tries to pick up things which aren't there - these are hallucinations. He also gets food and drink all over himself. He is at a stage where he really can't do much for himself, not sure if this will continue or if he will improve, fingers crossed.

Got the car cleaned out!! Getting presents wrapped. George needs constantly being given food and drink - small regular amounts throughout the day (then the clean up) as well as the catheter being emptied regularly. He has to take these antibiotics four times a day on an empty stomach - the only time that really happens is first thing in the morning but I do my best... so far so good and there has been no further blood in the urine. We see the doctor again tomorrow.

Just found that George has poured his drink over the table and put jelly beans into the glass!!!???

Now to tidying up this place - and the weather is so nice outside!!!

Thursday, December 18, 2014

Struggling

I have been struggling with the bloody catheter all week. I am also struggling with everything I have to do. Tonight with a call from someone who could talk me through it I now have it sused on how to put on the night bag.

This morning George's caregiver arrived about 9.15. During his shower some workers on the road turned off the water! Just what you need. Once he was ready we went off to the memory clinic end of year coffee. Next it was to Mum's home. Stayed there for some time. Today mum was awake and then asleep in equal time frames during this time.

On the way to Brighton George was obviously in pain so I took him home, gave him more painkillers ( he had his medication while we were at the home). I emptied the bag for the third time today which shows he is getting those fluids through. I then put him on the bed and put on a DVD. I then went and did the things I needed to get done, post mail, get groceries, order meat, order flowers for Mum, get petrol for example. By the time I got home I needed to get the washing on as I was not able to get it done this morning. I then had to get on with tea.

George had a good sleep while I was out so that was good. I am now off to get him ready for bed.

I must say I am flat out but achieving very little. I rather panic when I think of all I need to do in the next few days so I try hard not to think about it. Unfortunately a lot of time is spent unproductively as I am with either Mum or George. I did have it all worked out as to what had to be done and when I would be able to fit it in but unfortunately the last two weeks have thrown everything out and with only be to do everything I doubt if I am going to achieve what I need to do.

No rest for the wicked ( I was wicked in a past life as I don't have time to be wicked).

Wednesday, December 17, 2014

Changing the bag

Yesterday the nurse went over what I needed to do to change George's bag for the night one. I wrote down the instructions plus I had found a video on YouTube. Last night I tried to do it! George is very sore there at the moment. I tried to pull the day bag out. Would not come out easily plus I was getting wall to wall moaning from George. In the end I gave up and drained the day bag during the night. I have Russell coming to George tomorrow morning and I know he will be the help I need, thank God for him!

I will try again tonight but I am not sure of my success.

Tuesday, December 16, 2014

What a day

This morning I emptied George's bag, all good! We had a community nurse coming round at 10 o'clock as George had a caregiver coming to take him for coffee at 11.30. At 10 I drained his bag and nearly took off - there was blood in the urine. I wondered if something had happened during his shower this morning but thought, great the nurse should be here in a minute. She turned up an hour late. She explained how to change the bag for the night bag - did what I was told tonight but could not get the day bag out the way it was supposed to and George was in pain so I gave up, I will drain the bag during the night. It is all very well but there must be a trick to this.

The nurse organised for me to take George back to the doctor later this afternoon.

George went out with the caregiver while I went to Mum's home for a family Xmas afternoon. I am pleased I did as she was awake and alert and I would hate her to think we didn't care. George was dropped at the home and then I took him to the doctor. He does have an infection and he has been given antibiotics.

Keep your fingers crossed!

Monday, December 15, 2014

Drinking

One of the important things to do with a person who has a catheter in place is to ensure that they have plenty to drink. Obviously I am not keen on him having wine and he is not keen on water. Today I have bought a lot of Duet for both George and Mum as they both like that.

I am also giving George Panadol for pain.

After four o' clock it is good to knock off the drinking so there is not too much urine overnight.

Nurse

Saw the nurse at the doctor's surgery yesterday. A doctor also came and checked things out for me. They are contacting Nurse Maud for me. I did explain to them that I was not a nurse, never had been and never wished to be ( I always fainted when I was visiting in a hospital). They were wonderful and spent over an hour with me which was wonderful and they did not charge me! The were not impressed with the hospital - tell me something new!

Everything was going well at this stage - so far so good. Big problem with these things is infection. Over the weekend I bought piles of Dettol products. It is something I have tried to do is make sure things are clean - get in a mess with George pulling stuff out but try to keep things clean.

Saturday, December 13, 2014

A day for George

Something that is quite difficult is to keep taking the time out to continually amuse George. I do realise how important it is to do this but the carer will often be very aware of all the other things that need doing. George has not been capable of providing any sort of assistance so everything inside and out depends on me.

Today I took him down to Brighton with me to get some more cleaners. I am very aware of making sure things are clean ( although rarely tidy). I get soaps for example with sanitisers in them and I use a lot of bleach and Dettol.

When we came home I took him outside to sit in the sun for a while as I am a firm believer that we all need vitamin D. I got him a drink and some biscuits. I have found that it is best to give him one biscuit at a time as if I give him more than one he leaves bits from each biscuit. I am not sure why this is but it may be that he forgets about the one he is eating and just goes on to the next or if he thinks he should leave a bit if each one.

He seems to be a lot happier today than he has been since his turn and did tell me today that it frightened him. The catheter obviously can get uncomfortable but we are managing.

I have an occupational therapist coming round in the morning and I am taking George to the nurse at the doctor's surgery tomorrow afternoon.

Friday, December 12, 2014

Going well so far

This morning I went to the home to see Mum. It is cold here so George did not want to go, instead I got some morning tea for him and a drink and put on a favourite DVD. A neighbour also popped in a few times to check all was OK.

Everything went well and when I got home I got him some lunch. He is nodding off quite a lot at the moment but this can be nature's way of helping the body to heal. He is eating and drinking well and ( fingers crossed) today has not attempted to take the catheter out. I have explained to him several times that he does not take his pants down! So far so good.

Up and dressed

George woke up this morning and I quickly took him to the toilet and emptied the catheter. He is very confused so we went quickly to the lounge to have coffee, fresh fruit and cereal as getting some food into him often seems to help.

After breakfast I got a bucket with warm water to give him a wash and got him dressed. He now seems a bit happier. I have to go to Mum's home this morning so will talk to the caregivers and nurse there on things I need to do and things to watch for. At this time I am not sure whether to continue using a onesie at nights or whether to use pyjamas. I think the onesie as I do not want him trying to get the catheter out.

To try to help with confusion I also keep plenty of jelly beans around to keep the blood sugar level up, he is not diabetic but they do seem to help.

Proud

I am very proud of myself.

On Wednesday they put a catheter in George. They told me on Thursday that they had taken it out again, what they never bothered to tell me was that they put it back in again! I have never had anything to do with these. I had no idea what to do. As we did not get home until late this afternoon I immediately rang the doctor's surgery and am seeing the nurse on Monday but that didn't help me over the weekend.

I looked up on the internet on how to empty it. Went down to the chemist to get some alcohol wipes and spoke to the people down there, none of them knew how to do it. Got the general idea from the internet so after tea got George into the toilet and got us ready to empty this thing.

Problem: couldn't find the pocket they were talking about in the instructions. I tried to unscrew a bit I found (quite the wrong thing to do).

I then went back to the internet and found myself a video which was about a catheter and while it was not on my problem it gave me enough of a guide that I was able to then work out what I needed.

All sorted now!

The bit at the bottom pushes left to right but does not come apart like I was trying to do.

What a learning journey the last four years have been although I have to say that none of it has been anything I ever wanted to know about.

Thursday, December 11, 2014

Home

Just arrived home only to find that they have reinserted the catheter after telling me yesterday they had taken it out. I do not know about looking after this! I have rung the doctor as it is late on Friday afternoon. I am seeing the nurse on Monday and have an appointment with the doctor on the following Wednesday.

Since we have been home (less than half an hour) I have found George twice with the continence pants around his knees. This is going to be a challenge!

The hospital think this episode could be caused by:


  • Urinary overflow and suspected overflow incontinence
  • Suspected vasovagal episode
An appointment will be arranged with a urologist.


Incontinence

Just had a ring from the hospital and the doctors have just seen George and they are discharging him today. I said if they could bring him to the front in half an hour BUT

They have to do some paperwork first which could take some time!

The nurse then said he thought I should come in and see him so he could show me how to put incontinence pads on George as he was now incontinent. I explained to him that I was way past that and that he wears full incontinence pants! As I said to him I cannot park and get George to walk to the car as there is presently nowhere close to park but you can drive to the main entrance to quickly pick them up.

Wednesday, December 10, 2014

Observation

At this stage George is now going to stay in hospital for another night for observation.

He is now able to stand without others holding him up which is a great improvement. They do not know what caused the turn yesterday but it looks like the symptoms have now gone. I am very aware that he has mixed dementia and part of this is vascular dementia which is is caused through mini strokes. I have never niticed him having one of these but he must have been having these for some years. They checked him out yesterday for this but saw no signs of this, fingers crossed. Those with mixed dementia often have a stroke or heart attack unlike those with solely Alzheimer's dementia.

Waiting

I am still waiting for the hospital!!

I rang early this morning and they told me he would be ready to go when the doctor had seen him and someone would ring me.

An occupational therapist rang to discuss handles etc in the flat for him to use. She also told me someone would ring later in the morning. He is able to stand on his own so that is the main thing.

It is now 1 o'clock and I have been waiting all day!!

Hospital

Yesterday George went out for a coffee with a person from Healthcare. While he was in the car on the way home he suddenly told her that he was not well and clutched on to the seat. The two of us got him out of the car and to the doorway of the flat when he just wouldn't go any further. I raced and got a chair and brought it to the doorway and we finally got him into the chair. He was white as a ghost and his skin was very clammy. I felt his pulse and it was racing. I rang an ambulance and they came out. They took him into the hospital and I followed in a car. I did not go in the ambulance as there is no one here to help me and I have to be able to get home. It is also very difficult to get a park near the hospital. I got in there and they found that George has an irregular heart beat but they were not really sure just what was going on. A nurse and I both explained to the doctor that if George took another turn during the night or tried to get out of bed then I would not be able to cope on my own as he is pretty big compared to me and I would need someone else to help me, these are certainly times when it is so hard managing on your own. George was not able to stand on his own even holding on to something, he needed people to hold him up.

It was the same the morning I found that Mum had lain on the floor to relieve the pain in her back and she couldn't get up, nor could I get her up. I got George to come and help me and the two of us were not able to manage it. Finally we got someone else to help and it took all three of us to get her up. By that time her blood pressure was through the roof. In that case we also had to ring an ambulance.

The hospital plans to release George home this morning after a doctor has checked him out.

Saturday, December 6, 2014

Night time antics

I must have been very tired last night!

When I woke up this morning I went out to the lounge where I found an absolute mess. Good old George had been up in the night and brought a pile of stuff out into the lounge and piled it up all around the place. He was now back in bed sound asleep. I must admit I looked at the chaos and wondered how the hell he had done it. He had left three walking sticks under these piles. He uses a walking stick getting around and is always VERY slow. I have no idea how long it took him!

When he woke up I got him to help me put everything away. While this takes a lot longer at least it keeps him occupied for a while.

Friday, December 5, 2014

Helping to retain that memory

After our horrific start to the day (see below) I managed to get George back on track! This did take some time but worth it. I made sure that he had his breakfast and also gave him some jelly beans to help the blood/sugar levels. I then got him out the big book I had made him and we went through it. The first time he did not recognise many people and had to read to find the names even with the picture of him with Audrey Hepburn, something he loves to remember. The second time he was a bit better and the third time he really got into the swing. He would turn a page and say, I remember this and then proceed to tell me about that day when the photo was taken. It was interesting too that he certainly remembered those he had spent time with recently, for example his son and grandson who had both visited from Sydney. I think this would be because they both spent a lot of time with him while they were here. Another old friend rings him several times a month and this seems to be important to George. They talk about old times and people they both knew as well as rugby games. For family it is important for them to spend as much time as they can with a person with Alzheimer's and keep talking about the past as then they have a greater chance of having those special moments with that person as the disease progresses.

For those separated by being in different places a great way to overcome this is via Skype - just make the time.

Next step?

After a fairly confused day yesterday George is really confused today!

When he got up this morning he was nearly crying as he came down to the lounge. Yesterday I took him to get his hair cut. This morning he kept saying "I have been to them for years". He was talking about the hairdressers he went to in town. I told him not to worry as it had gone because of the earthquake. He asked me who I was. I asked him who he thought I was. He said he thought I was his wife. I told him that was right and did he know my name. He said Diane. With a lot of moaning I got him dressed and gave him some breakfast. He then started talking and asked about family. I asked if he had any children but he didn't think so and thought they had gone in the earthquake. I explained they weren't here. I said there were two in Sydney but he couldn't remember their name's. I told him that they are Mark and Scott and he said he remembered Mark, this may be because he saw him earlier this year. I then told him he had another son in Auckland called Justin. He said "he's a bad bugger". I asked why and he said that he told lots of lies! He asked if he had any daughters but I told him he didn't. I gave him his big book to look through which he found interesting although he did not recognise many of the people in the book.

It is going to be interesting to see if he remains like this or if he improves of if he stays like this. I am off to Mum this morning and was going to leave him home but don't think that is a good idea.

Thursday, December 4, 2014

Rubbish

I put a huge lot of adult diapers in the rubbish each day and I must admit I often think about the environment. We often hear about the number of nappies from babies ending up in the landfills but the adult ones being used must also be huge and will be growing.

I don't know the answer to this problem and let me tell you I am not using washable ones ( if there are such a thing ).

Bottom lip day

Thank God another dry night however -

The bottom lip is slack today! Won't go into the detail that the poor caregiver had to put up with but very pleased that it wasn't me dealing with it!

I took George with me to Mum's home today as our friend is in hospital and I will be going again tomorrow. When George is like this he fits right in! Took him to the barber on the home.

On returning home George needed to go to the toilet which he did but I had to clean him up and change him. On days with the slack bottom lip he gets more and more confused.  Someone told me I would know how to deal with George's incontinence as I had had a child to deal with! Let me tell you that dealing with a child is nothing like dealing with an adult - use your own imagination on this front. Enough to say it is not pleasant. Plastic gloves and make sure you have good cleaners.

I find on days like this there is no point in trying to do much, just go with the flow and I also ensure that he has plenty to eat, jelly beans are good at getting the sugar level up which often helps.

Tuesday, December 2, 2014

What a strange disease

Fantastic, another dry night!

George has been pretty good for the last few days. He has known what is going on and has been following instructions! One of the caregivers commented on it yesterday. We all try to make him do things for himself, for example putting clothes on and off. We have to tell him what to do and he then tries to do it. It is so important to keep them as independent as possible.

The problem is that you never know what each new day may bring.