Kewpie has returned

Today when I went in to see George I greeted him by saying 'hi darling how are you today?'. He said he was fine. I then asked him who I was. Straight away he said 'Kewpie'. It was nice she had returned. Today we were in the 21st century.

George told me he had been round to visit me but I wasn't home. I said that it must have been when I was coming to see him so we must have crossed paths. 'what a coincidence' he said! He certainly feels that he leads an active life....

During the time I was helping him with his lunch I saw he was in pain. It is to do with the catheter he has. I do find that it is important that I keep monitoring him and constantly insisting that the carers do to to ensure that George is not in pain.

The toys

Another story I read, as a child, was how toys came alive when everyone was asleep.

I often think George must have read this story and decided to act it out at night. Maybe thinking he is a toy.

I often find clothes and shoes in the bed when I go to make it in the morning.

George mucks around in bed. This morning I found he had pulled the catheter bag off his leg and then the bag had come separated from the catheter.

Result: a wet bed.

I usually have a stocking over it to try to keep it in place. Unfortunately some caregivers forget to put it back on and this was the result. Sheets get changed here very regularly.

Next crisis

This morning there was very little urine in George's catheter. I had to call the district health nurse as we had arranged to have the catheter changed on Friday and this needed to be done immediately or the kidneys can start to pack up. The nurse arrived and tried to flush it out but no joy so between the two of us we changed the catheter. Luckily that worked with me distracting and relaxing him while she did it. Really the two of us managed extremely well. I know it doesn't sound much but it all took the whole morning so he has not gone to his club today.

Last night during the sun downing he went out to the garage and started bring stuff inside such as a spare kettle and some other stuff. I was unable to distract him as he had some strange agenda going on so it is easier to let him go otherwise he thinks he is doing something wrong and he tries so hard to do things right. After he went to bed I sorted it out.

Catheters

Yesterday a nurse came to the house to change George's leg bag (this is done weekly). Unfortunately she did not push the bag into the catheter tubing properly resulting in them coming apart during the night; result - another wet bed so I had to quickly take all his clothes off, clean him up and put some new clothes on until the caregiver arrived a couple of hours later. Three loads of washing for him today.

His bed must be the cleanest and most aired bed around

Today I had coffee with a relative from Australia who was in a similar situation. We were discussing the cost of rest homes. Much cheaper over there. Here the cost of keeping one person in a home is the total salary a teacher with a minimum of 14 years experience and in a senior position gets. This is just the very lowest basic rate and then other things are also required. This is a lot and then of course, for me,  I still have to live. Unfortunately that is impossible so he won't be able to go into a rest home unless something radical happens. Luckily he is still compliant and non aggressive. Mum's fees were paid for but had I not gifted and paid for so much her estate would have depleted down to the threshold for a subsidy but had this happened I would have failed her and the family.

I guess I could go back to work to pay for this but I would now have to retrain in accordance with the new regulations and all the money would just be going straight to the rest home. Teachers, I also feel, have their 'use by date'. I used to see lots of them who were still in the classroom long after they should have been but they were still working because they had to as they needed the money. This is not good for the children in their classrooms and I have no wish to become one of them.

We do have a govt subsidy here but you need to have a very low level of assets and no extra income to get this. My super puts it out of my reach. My advice to others is to spend or put things into a trust when you are very young. We are taught to save for our retirement and then you spend it all on keeping others in rest homes, seems very wrong. I admit that this was not on my radar and I do feel envy for others I see able to travel and enjoy their families and their lives in retirement. However we just have to make the best of what the cards deal us.

When things go wrong

Keep calm...

As I say to George "don't worry, be happy".

On Monday a community nurse came to put a new catheter in for George and unfortunately botched the job. No urine came out of the catheter during the afternoon, only blood! We ending up spending a lot of the night in the hospital getting things sorted. When things like this don't hesitate, as a carer it is important that you ensure that things are going well.

This sort of thing causes upheaval to the running of your lives and although I have kept George to routine as much as possible I have also been mindful of the situation and we have been very quiet today. The trick is to remain calm as if you appear stressed it will not help the situation but in fact make matters worse.

I have also let the powers that be know about the situation. It is important that the professionals dealing with these people do a good job and do not try to trivialize the seriousness of it.

Easter

George seems a bit better today but a bit confused. A nurse came round this morning and changed the catheter as well as the day bag. Afterwards I took him down to Brighton for coffe and a chicken and cranberry pie which is his favourite.

Last night I felt so blessed with the best Easter present ever. I was so lucky to have a visit from my Dad. This is the first time he has come back and was so special. Many years ago my grandfather came back, how lucky am I? Dad told me how proud of me he was, how much he loved me and how he approved of everything I have done since January 2001. He knew all I had done which astounded me and he fully supported all the things I have done. He said there was nothing he would change, that I had done the right things which gave me confidence as it can be difficult thinking how you could have done things differently; not a hint of a criticism. He told me that of course he expected nothing less from me - sounded so like the things he used to say to me. I have always felt that Dad and my grandfather are with me steering me in certain directions and Dad said that that was exactly right. I felt an incredible sense of wellbeing and so blessed. Strangely enough a nurse at the hospital that day told me I had angels watching over me...

Today I have been mulling over his visit and everything he said.

Being organised

I try to empty George's night bag while he is still asleep first thing in the morning which is a help if he takes the two bags apart.

Something which can be very irritating is when George wakes up during the night and goes walk about. Each night I leave out all the clothes ready for the next day so these are ready for the caregiver in the morning. Unfortunately Goerge will take some of these and put them on over his onesie ( more washing results). I often then need to get more clothes ready in the morning. I am running out of places where to hide thing. It is all pretty random making it difficult to plan around, for example other nights he will pull a whole lot of stuff out of the wardrobe, put some on the floor and put some on for the layered look then back to bed. I have also found him trying to put my clothes on!

With Mum being in a home it has cost me a lot over the last four years and now I need to try to recoup. I have a small contract which pays minimum but every little helps. It also gets me out and gives me something different to do.

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. 

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

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.

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.

Catheter problems

At night a larger night bag is attached to the end of the day bag so urine passes through the day bag

and is collected in the larger bag. I have been worried about George and nocturnal wanderings when he drags the night bag around. I try so hard to get him to stay in bed but unfortunately I don't always wake up. Last night he got the night bag off the day bag which meant it drained on the floor. It also meant that the day bag had the valve left open meaning that any urine was not being collected. Very nice!

Luckily this happened not to long before I discovered it but not too much damage but ...

Catheters

As I have said before caregiving is a learning curve.

As well as knowing virtual nothing about Alzheimer's I knew very little about catheters. I did know that they were for draining the liquid from the bladder but that was all!

These need to be emptied regularly and in order to do this you need to know how to open the valve. This is a trap for young players as there are many different types. The first time it took me ages to accomplish and I found help on the internet. Another thing you need to ensure is that the person with the catheter drinks plenty of water. I can't tell you that George likes water too much and would rather have something else to drink but we get there.

At night a night bag is attached to the bottom of the day bag. You then leave the valve of the day bag open so the urine drains through into the night bag ( this is a bigger bag). I put this inside a bucket at the side of the bed. In the morning you empty the night bag leaving the day bag. You then need to flush out the night bag by running water through it ready to dry. Before hanging this up to dry you need to place a cap on the attachment end. Infection is a major issue so I am using a lot of disinfectants.  Something I worry about is when George goes on a night walk. He drags the bag around with him and I worry that he will trip over. If this happens we are in real trouble as he is too heavy for me to get him up and he wouldn't be able to do it himself. So far I have not been able to stop him doing this.

Unfortunately George came home from the hospital with an infection which has proved difficult to clear up but I think we have now achieved this.

Many people refuse to care for these people in the home situation. It is certainly not easy.

Something that you also need to remember with people with Alzheimer's is that they are unable to cope with several things going on at one time. George is better in a one-on-one conversation. I also find that most parts of the internet are too 'busy' for him. I try to find relatively uncluttered things to share with him - these of course need to be things he is interested in.

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!!!