Timely reminders

Hi folks, well Julie is definitely on the mend, she is not needing as much support these days, which is one of the reasons for the title of this piece.

As a carer you have to find the dividing line between caring and controlling, in this instance I have been used to helping Julie with everyday things such as moving around (using a wheelchair), washing, dressing etc. Now that she is improving I have to know when to back off until she actually needs my help, rather than jumping in with both feet.

The next thing is communication, now as all us blokes know this is not easy as women have selective hearing (kidding no threats please girls). Joking aside this is very important, more so when the person you are caring for has other issues, such as my Julie who has early onset dementia. Now this is in very early stages and since breaking her ankle it does not seem as bad, as she has come out a stronger person. However, there are still times when she may ask two or three times in a day, “when is that appointment”? You just have to take each day as it comes.

Patience also goes along with communication as you may say something which is forgotten hours or minutes later. Do not get angry (frustrated is okay, but let it out in another room) just because you know you have told them, even without dementia, Lupus brain fog can be just as bad.

Making and keeping appointments, now this seems easy until you have them everyday of the week, go back to what I said above and you can see how this could lead to frustration. It is up to you as the carer to maintain a diary/calendar for these things. Don’t be tempted to buy them a pretty diary and say “here, now you can keep track” it doesn’t work like that. An example could be as follows, your partner is suffering from brain fog and they have the following appointments; daily trips to the doctor as they are on warfarin and their INR is all over the place, there is also that dental appointment, a trip to the Rheumatologist, an xray, hair appointment (don’t laugh this is VERY important) and then are all the prescriptions in date, if not don’t forget on one of your trips to the doctor to get them replaced, then don’t forget to pick up what is needed. So do you expect your brain fogged partner to remember all of this, extreme as it is, it can happen like this.

Oh and don’t forget to keep fit and healthy yourself.

Sounds daunting, but once you are organised it gets easier and you don’t notice you are doing it. However, don’t become tied to this support you need to have balance, get a hobby, make time for lunch dates or just going for a drive, you will both benefit, just be aware that they may go to bed when they get back. This is normal.

When all is said and done, you do all of this because you love them.


Can breaking your ankle be a good thing?

Seems like a silly question, but in Julie’s case it does seem to have had a positive effect on her.

Let me explain, as her carer I was always concerned that Julie had given in to her illnesses and that they were controlling her not the other way. There was no spark in her eyes and I had a hard time trying to get her to do anything. This is understandable when you know how badly autoimmune diseases can effect everyone, and the fact that it works in different ways for all, but the overall effect was hard to watch.

However, since the accident in January, things have turned around. She is more positive, the healing has been slow but we can now see progress. Having been doing the dressings 2 out of 3 times a week I can see the improvement in her wound and I think that the care plan will change this week as a result. She is getting more independent (but we are not rushing her progress) and we are getting out and about. As a result my stress levels have lowered considerably and I do not feel run down anymore (which is good for the old ticker).

As a carer I will take these wins anyway they come.

So you can see why I posed the question at the beginning.

Quick carer update

Hi Folks, well in the last week Julie has had a UTI but luckily it was not bad enough to get her re-admitted to hospital. We had some antibiotics (prescribed) that did the trick…phew.

On the ankle front the Wound specialist at hospital is allowing me to change her dressing, this was because I have experience (being an ex volunteer ambulance officer) and the fact that I have had to do many things for Julie, whilst she was in hospital. So I will be doing it twice a week and once by the nurse to check all is okay. She has also given me her mobile number, so if I see something I am not happy about I can take a photo and send it to her for advice.

So apart from the UTI and pain in her ankle and leg (which is to be expected as she is up and about a lot more) all has gone well this week. Here’s hoping for many more.

Nice to have some good news to share, and having her back home has been good for me as well.

At last good things are happening

Patience is a virtue for those with Lupus and their carers. 8 weeks later Julie could be coming home this week.

She has made leaps and bounds in her progress, she has fought off another UTI and some sort of bug, she is able to put 50% of her weight on the broken tibia and needs less help getting around. The boot is going to be on for at least 6 more weeks, but that is nothing compared to what it used to be. One thing though, if you or someone you know has a broken ankle and is given a boot to wear, make sure it is the right size. Julie had one that was way to big for her and it took ages for anyone to take any notice and get the right size, now her foot does not slip and it is now a lot more comfortable.

I am also fighting a battle to get someone to organise for the Continence nurse to see her, but I will keep battering away at the wall and will get someone in.

The next test for Julie is to get in and out of the car, once the physio’s are happy with that she will be clear to come home.

Watch this space

More issues brought on by dementia

Since my last blog, which was way too long ago, things have taken a bit of a step backwards.

Just as Julie was starting to become more positive about changing her life, which was great news for me, she decided to take a fall resulting in a severe fracture of her tibia and 2 smaller ones.

We were discussing holiday plans, 2 weeks down south in Albany just chilling out and recharging our batteries. We were also going to start her on the road to improving her physical self with small walks along the sea front. Dietary changes and even for her to get back into crafting. My mind and heart were so happy to hear all of this.

Then 5 weeks ago she slipped getting back to the bed and fell down, I was in another room and heard a crack and thump. I ran in and she was slumped down in the corner of the room leaning against the bedside table. She said “I think I have hurt my ankle” so I had a look, at first it looked like she may have twisted it, but when I moved her other leg her left ankle was hanging off to the left, I remember replying “Yes sweetheart you have hurt it”. I could see the bone where she had fractured it. This was when the ambo training took over, otherwise I think I would have been a wreck. I managed to get her more comfortable and got the ankle lined up. Checking her pulse it was nice and strong and her toes returned to normal after pinching them. Julie was not exhibiting any signs of pain so everything went well.

Called the ambulance and she was splinted and rushed into emergency under lights and sirens (the one part she does remember, which pleased her no end, after all her trips in an ambulance, finally lights and sirens). They quickly examined her and made everything secure and off she went to Bunbury where she had surgery the same afternoon. I was in everyday and it was about 5 days later when I went in and she was like a different person, previously she was so drugged up it was like her dementia had taken over. We were told she would get to rehab at Busselton, which is closer to home, and would be in for a couple of weeks until she could put weight on the foot. They obviously hadn’t taken into account all of the other issues and 5 weeks later she is back in surgery having the ankle cleaned out and debrided, because it wasn’t healing properly. If it doesn’t look good then she will be off to Perth to see the plastics team, to have a flap put over the wound.

So my advice to carers, is get some first aid training it will help in the long run.

Mentally rough times

It has been a while but as the title suggests, not everything has been going smoothly for me. That is not to take anything away from Julie but this blog is for carers.

Since the diagnosis of Early Onset Alzheimers, I have not been coping too well in fact I am going to have to get some help in how to deal with the situation. The Lupus seemed to be easy to manage with but Alzheimers is a whole new ball game.

Watching Julie start something and then forget what it was before completing it, having difficulty changing channels on the tv, in fact having issues with a lot of daily things is proving to be very upsetting, frustrating and seems to push me to the edge sometimes, I have to bite my tongue so that I do not flare up. I never thought this would be so hard after all it is just looking after someone you love…..isn’t it……NO it isn’t.

To add to the mix there is now incontinence to deal with, this is actually quite easy for me, just get all of the aids we can to make it easier for Julie to deal with, makes it easier for me to deal with. However, it is still upsetting when I see Julie visibly upset at what happens. So hopefully, having all the aids etc around her will help her, which in turn helps me.

I thought I could handle all of this but it is making my life hard, seeing how difficult Julie has it. In fact I have tears escaping whilst writing this. I know I have to be strong but it is not easy, luckily I am not too proud to ask for help, so I will be contacting the Alzheimers Association for help, I am also going to be talking to the respite carers in the area to see what help I can get to allow me to have the occasional day off, which sounds awful to me but I know it is part of being a carer.

I will do anything for this woman as she is my soul mate, my friend, the love of my life and that is what keeps me motivated.

Testing, testing, testing part 2

So Julie spent just over a week in Sir Charles Gairdner hospital Perth, test after test and we finally got a diagnosis, not a good one. She now has Early Onset Alzheimers, at the moment she is in the mild spectrum.

So Christmas was cancelled to an extent, but we had a lovely Boxing day (also Julie’s birthday) with friends which made up for it. We still have to go back up to Perth for a PET and chromosome 9 test, then they can put together an action plan for our future.

So now we are trying to get our priorities in order, wills etc, I am going to be trying to get my Military Service Pension, from the UK, early so that will help financially. If not I will look to get my Aussie Superannuation early, either way it is going to help with the expected increase in expenditure. The other thing is looking at what is available in the way of Respite Care for when it is needed and even getting on the housing list, I am sure there is more but that will become known in time.

So as her primary carer I have my hands full and it is not going to get easier, but I love her and I will do anything (legal!!) to keep her comfortable and happy.

I have to admit that it is hard to imagine what is to come, and that is a scary thing!!!