Month: August 2023

Saturday 26th August.               It has been a very busy week.  We just arrived home this afternoon after having spent the last few days in Adelaide at Flinders Medical.  Annabell has not had a great week and to make matters worse most of the chaos this week was caused by me.    I have been the primary carer for Annabell for the last two years. Generally, I   can keep things, like appointments, organized and flowing well as well as attending to other things and keeping her medication organized, but two years in this environment is draining. People have visited, called on the telephone, came and offered all sorts of help but to date, nothing has been done. I have to confess that I was reminded of something about politicians that my father told me many years ago – Politicians promise you the Kingdom of Heaven, then give you Hell for expecting it.  Well that’s how it all seemed to me.  Anyway, what’s all that got to do with the trip to Adelaide. Well, put simply we should not have been there!  For some reason I got it into my head that the visit to the Flinders Medical was this weekend. It was not – it is next weekend.  I got Annabell ready, organized John to look after Benji and on Thursday set off to Adelaide. Even then I was still under the impression that it was right when a proper look at my Filofax would have told me I was wrong.  It wasn’t until we arrived at the Cancer Lodge that I finally discovered just what I had done. They had no booking for us for this weekend and what booking they did have was for next weekend.  Fortunately, they did have space and I was able to book us in until Saturday morning. At 9:09 am on Friday I telephoned Flinders and told them what I had done, that I had stuffed up and instead of next week, I had brought Annabell down this week.  They were very helpful and very understanding and were actually able to get us an appointment to see her specialist that afternoon.  To say that I was relieved and very grateful is an understatement. However, even now (Sunday) I am still angry with myself for my stupidity.

The consult with the specialist was very helpful and we went through all aspects of the proposed operation, how it would be done and the outcome. We also went through the risks involved and she was very explicit in this and didn’t mince words. There is a possibility that Annabell might not survive the operation. One more test has to be done before a final decision made – she has to have an ECG Heart Scan, and depending on the results of that, a decision will be made as to whether or not they will do the operation. Annabell and I will be brought down to Flinders and if Annabell agrees, a proposed date will be set for the operation to remove the cancer. It will be by keyhole surgery and provided all is ok, it should take about two hours.  If there are complications, then   they will have to change to a major incision operation.

Annabell wants to have the operation in spite of the risks. I have reservations, but I fully understand her decision. These last two years have seen her decline from someone with whom I did the shopping, walking around the shops, to someone who needed a cane – to someone who needed a walker – someone who needed a wheelchair. Everything that she has experienced and undergone these last two or so years have had a major effect on everything we say and do. She is very tired and exhausted, and if there is a chance that she can get rid of the cancer and have a fairly normal (??) life afterwards, then despite the risks, she is willing to undergo the operation.  I have, as I said, reservations, but I fully understand her decision and I accept that decision. If, the opposite is true and the operation cannot be done, then I am faced with a decision. Given that she is almost chair-bound, unable to stand, walk or do most things, do I keep her at home or do I accept the advice of others and let them put her in a nursing home to be looked after. For me that’s no decision at all and I will gladly go from a primary carer to a full-time carer,   and I will do everything in my power to look after her and attend to her needs and do so until that is no longer possible. We have not come this far in our journey to even consider breaking the partnership.   That may well happen, but not today!

What can I say — the placement is just brilliant.

Monday:

First of all I have to say that Annabell is back in hospital again. At 1-40am she rang my buzzer and I came through to help her out of bed. In doing so, she lost her balance, and I was unable to hold her, so she slid onto the floor. Called out the SA Ambulance, which took the best part of 40 minutes to arrive.  The hospital where they are based is only about 15 minutes away. This is a country town.  However, they might have been busy and I had no desire to start anything that detracted from helping Annabell, so I  kept  my mouth firmly closed Rather than go back to bed, Annabell decided to go to her recliner, and I covered her up. At about 4am, she decided she needed to go. She was exhausted and on the way back she pushed the walker too far and she lost her balance again and fell in the hall. Ambulance called out again and this time they beat their previous record taking 52 minutes to arrive. The point is that when they did finally arrive, they got down to helping Annabell, and that’s all that’s important.

Annabell underwent some tests at the hospital, and it was found that she had a serious Urinary Tract Infection. She was admitted and is presently in the Women’s and  Children Ward.  Lady came in and talked about respite and then came back a little while later and said she had a place for Annabell here in Whyalla. Wow!  Then she went on and basically, she was suggesting a Nursing Home – full time. I said NO – absolutely not! Annabell and I talked about this, and it may come to that but not today – not now. I know the place and when we came here many years ago it had a nickname – God’s Waiting Room. If Annabell were to go there, it would be the end of her. So, the answer is no. As far as I understand that seems to be the end of the matter.  We had a meeting today with several doctors and it was decided that the Endoscopy would be unnecessary since this was done in Adelaide and there seems to be no indication that   anything was amiss. To do another would be pointless.

Thursday:

Annabell was released yesterday -much to the chagrin of several people, but it was the doctor’s decision and  that was that. I can understand his decision, after all, having pesky patients to be concerned about takes time away from doing paperwork and writing reports that no one actually reads.   Today I had difficulty getting Annabell out of bed and had to stop because I was very concerned that she was going to fall.  I was trying to get her up and dressed to attend a meeting at the hospital on the provision of respite care, however, she said that she could wait until I came back – provided I was not too long.  The meeting did not take place because it was policy that Annabell had to be actually sighted in person. It was then decided that the meeting should be held here at the house. Basically, it was a series of questions and form filling as required by the Federal Government, who run and fund the programme. In essence, although all this has been done, the chances of getting a home care/ home help package any time within the next six to eight months is fairly remote. There are so many packages out already and there are no people available.

At the moment, however, she is not too bad. She is walking a lot better and she is sleeping through the night – some nights but not all…. This is good because not only does she get a night’s sleep – I do to. At the moment we have no idea what is happening with regard to the respite – just have to play events as they happen – although I was promised a full report of the meeting Monday or Tuesday. On Tuesday we are going for an EEG and they will examine her brain function and try to determine what is causing the seizures.

At the moment  we have had a few warm(ish) days but generally it is still cold, but I take comfort in the fact that it is only  26 days until spring.  Yes , we may well get the heatwaves you have experienced – probably will – but after this cold I will be glad of some heat for a change .

Benji is well and we get out for our morning walk when we can.  It depends on how often and when I get called to help Annabell. Still, he likes going out –  I pick up the car keys and he is at the door before I am.—  He is nowhere in sight – I quietly and gently pick up the car keys, look up and there he is – standing at the door waiting.

In closing; Today is Sunday (7:50am) and I have been called to assist four times since midnight. No morning walks today.