Some really low times

Over the weekend and part of this week has been the hardest of my life, Julie has been mentally so low it has scared me worse than being on a ship being bombed in the Falklands.

I have had to deal with someone who is thoroughly depressed, even manically depressed, very angry with anything and anyone. I have not come across anything like this in my life and did not know what to do. So I did the best thing and just spoke quietly and sometimes did not even talk, as she did not want me to. Shutting herself away in the bedroom, making it evident that she did not want me to come in, even to see how she was. It got to the point that I was scared to open the door in the morning for fear of what I might find.

Thankfully she is now better in her mental health and realised what she had been like, she apologised, which was unnecessary as I knew it was just the dementia and the effect of all the other health issues grinding her down. I will do and put up with anything for/from her because I love her.

But it is bloody hard at times.

Counselling, a bit of a scare, and something positive.

Another week gone and more things to keep me on my toes.

I had my second counselling session and the therapist is great as she used to work in Dementia and understands exactly what I am going through (just a quick reminder at this point…..this blog is about the carer not the sufferer). It is good to be able to verbalise my thoughts and feelings and have a third party respond with ideas and suggestions. More tears and a pocket full of snotty tissues (sorry for the image) but feeling lighter when I left. Slept like a baby that night, it always tires me out going to these sessions.

So over to caring for Julie, she gave me a scare this week as I thought I was going to be taking her to hospital. She has been dizzy and had a minor fall, luckily nothing broken and no bruising, I have had to steady her a few times. She has been slurring her words, dilated pupils and her eyes in general look like she has been drugged. So I updated her care file and typed up notes on what had been occurring so that if we did have to go in, at least everything was written down, not only for the hospital staff, but also the Ambo’s.

I actually think her lupus may be raising its ugly head as she has had very rosy cheeks and that combined with other things (painful legs) makes me wonder. We had to move a doctors appointment as she was in too much pain after going out to get her hair done (very important, as she always comes out smiling). So we may be looking at home visits, our GP is great and arranged for the pathology team to visit us to take bloods, instead of having to take her in.

On the positive side, I had a great respite day at the local auctions. I managed to control myself (mainly because I was outbid) and even managed to get Julie a spinning wheel which she had seen. Another bit of good news was getting accepted by NDIS (Aussies will know what this is) which hopefully will be of great assistance.

Fingers crossed for a better week.

Changing priorities

I have been away from blogging for quite a while now, this is due to my wife’s (Julie) diagnosis of Early Onset Frontal/Temporal Dementia. This is not the protein type of dementia but has been caused by the dying of the Frontal/Temporal lobe due to a lack of blood, which has been brought on by Anti-Phospholipid syndrome. The lupus side of things are in remission and the dementia is now my focus. I will keep the blog name and address as the same as it is still about my life as a carer and she does have Lupus.

So what has been happening, well as you can imagine lots of trips to Perth to see one *ologist or another. Last time we went up we actually saw a Hepatologist and found out that there could be something wrong with her Liver, which is going to need further investigation, so we will add that to the list.

The hardest thing at the moment is coping with what I am seeing from Julie, the forgetting of simple things like using the tv remote. The forgetting what she was saying part way through a sentence. The forgetting about a movie or programme she saw just a day or two ago. The constant tiredness, the lack of personal hygiene, the lack of energy and motivation.

Now that sounds like every hour of every day is awful, but it isn’t these are just the worst of things that happen over the days and weeks. I am now seeing a Psychologist for counselling, to work out some coping strategies that will keep me sane over the remaining few years. My issue has been that I am not Superman even though I try to be.

This will resonate with any carer as you want to make sure that you do everything in your power to help the one you love. When you get something wrong then you are critical of yourself even though it may not have been your fault. You constantly think of things that you have done and try to imagine how you can do them better. Losing sleep because you are thinking of tomorrow and the day after and what you need to do.

What are you not doing, thinking and looking after yourself, the end result will be you will drain yourself and have a breakdown, then who is going to look after your partner – that is not meant to add another problem to the mix it is just the reality of not looking after yourself.

So what have I been doing, well I have booked us 10 days away over Christmas to visit Melbourne, flying business class and staying in a swanky hotel. Now just looking for things that someone with a disability can do easily.

The other thing is I have started an Ebay store, so that things I get from auctions, garage sales etc can be sold on and give us some pocket money. Of course I have let Centrelink know about this, but as long as I keep it to 25 hours or less, and don’t earn more than $304 a fortnight it will not affect the payments I get.

Well I am writing this at night, and after an hours counselling it can take it out of you, so I am off to bed to put into practice some of the things my counsellor told me.

More worries continued

So I am back and feel I can add more to the previous blog.

It was still a shock to hear the confirmation of Julie’s dementia diagnosis. I think that it was all too much at the time, and I wasn’t sure that I was coping too well, still don’t in fact. It has definitely got me down.

A gentle reminder to all that this blog is for carers, so if it sounds a bit like oh woe is me then it is meant to, as it will show other carers that they are not alone

I think the uncertainty of it all is the worst, as Julie put it, it will mean that down the line I will not recognise the woman I loved, and she will not remember the man she loved. Not knowing when this will happen is the hardest part, some things are evident now and then (having read up on Frontal Temporal Dementia – FTD) and scary bit is not knowing how things are going to progress and how fast, or slow.

Talking to Julie about it is weird, as she is more focused on how I am going to manage and I am more focused on how she is going to manage. I suppose that shows that we are soul mates.

Apart from the obvious thoughts, there is the issue of where are we going to better off, do we stay here in lovely (wet and windy) Dunsborough, do we move up to Perth/Fremantle so we are closer to all her specialists, or do we go back to the UK for family support, for now Dunsborough wins hands down.

So what does the future hold, as I often say “I have no idea and my balls ain’t crystal” but I do know that I will do what ever is in my power to make it comfortable and happy for my soul mate.

More worries

Well we have now had the PET – Positron Emission Topography, scan for Julie and it has confirmed the diagnosis of dementia, in her case it is FTD – Frontal Temporal Dementia.

We now have to wait for the Neurologist to make an appointment for us, so that we can discuss how things will progress and what coping strategies we can use. We are both realistic and know what the end result will be, but it doesn’t make it any easier.

So what now, I don’t have a clue. Even though we knew that the scan would just confirm what we already knew, it still feels like a big kick in the guts. So tonight it is pizza and a cream cake, followed by some naughty nuts later on. Tomorrow is another day.

My head is all over the place at the moment, so I will sign off now and come back when I feel I can contribute more meaningful insights to the blog.

Time out in Perth

Julie had an appointment yesterday for a PET scan, due to the early onset dementia, won’t know the results for ages. So we thought we would take a week out and stay in Perth for a week. This got extended a little way as we are attending a World Lupus Day lunch at a winery in the Swan Valley.

Julie had to have an iron infusion last week as she has been feeling run down and it has been hard to get her up and doing anything. This is fine as it is something you have to expect from Lupus, but it is still hard work. We had some bloods done and they showed the iron deficiency and low Haemoglobin. So hopefully this infusion will kick in while we are up here.

Only downside to being up here is that I miss an auction today and can feel my anxiety levels rising………lol.

So as usual we have not planned the week, and will take each day at a time, which is the only way to do it with Lupus. Today will be a nice easy one as we both didn’t sleep well last night so just going to Kings Park for Lunch at a great place called Botanicals, which has views over the Swan River and Perth.

This week is about recharging the old batteries, for both of us. This part of life is very important, as a carer you have to look after yourself and keep the batteries charged (also important for the person you are caring for).

Well time to go and stuff my face, and possibly have a nice glass of wine.

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.