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.
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!!!
Hi all, just a quickie today,
So we have been waiting for an admission to a hospital for my warrior to get a full work up. This was requested by our Rheumy, who by the way is great, following a letter I wrote about her condition appearing to worsen. She looks to have Parkinson’s like symptoms.
The call came Monday morning and would you believe it, I woke her up and what did I find…………………………..confusion, unsteady, etc………………………looks like another UTI or possible Sepsis. So driving up to Perth was out and ended up calling 000 for an ambulance to take her to ED.
Got to ED and usual barrage of tests, antibiotics etc then an overnight stay on the ward to ensure she was stable and off to Perth on the big Patient Transfer Truck yesterday lunch time, I will be popping up today to see how she is. Next couple of days will be one *ologist after another. Hopefully, at the end of it all we will have a better idea of what is going on and can put in place an action plan.
Gotta keep on your toes being a carer, but hey! they are worth it.
I have been quiet recently due to issues my warrior has been having, falls possible new issues etc. All the usual things associated with having Lupus and its associated siblings.
I have also been quiet as I don’t want to go repeating myself, and when it comes to blogging about an illness that can be very easy to do.
This next comment is likely to get me in trouble with my warrior, but sometimes it is better to see your doctor without the warrior being with you. You can have a heartfelt chat that really helps, be it how you are feeling and doing to something you may have noticed about your warrior, don’t forget everything you say is confidential, but DO NOT talk about anything your warrior has said she/he doesn’t want discussed, wait until they are happy with the issue and then discuss it.
As lupus progresses, it can bring more issues than you feel you can cope with, and you start to doubt yourself, I have had this issue not too recently where I was worried that I wasn’t doing enough for my warrior, that somehow I was letting her down. She soon put me right, but it will come over you at times and if it does…………TALK!
Whilst writing this I have had a call from our Rheumy, who is concerned about the progression of my warrior, and has asked that I talk to her about being admitted for 3 or 4 days to do a full work up on her. I am not looking forward to doing this, as I know it has been a concern of hers every time we go to Emergency or even to our GP. Still it has to be done and this is what happens when you care for someone full time, so wish me luck.
See you on the other side
So I have been away for a while due to issues with my warriors health. She was getting dressed a week ago (should have been sat down) and got her toe caught in her knickers. This resulted in her face planting, whilst wearing glasses, I heard a thud and then her cry out, I ran into the bedroom and she was face down on the floor. First thing I did was check her head and found blood, shit I thought this is going to be a hospital trip. Luckily it was only a small cut caused when her glasses fell off. We managed to get her upright again and saw the bruises already appearing on her face and body.
I checked her over and she seemed to be okay, so we left off going to the hospital straight away. I wish I had made her go when I thought of it.
Had to take her in to hospital, after a visit to our GP, when she wasn’t getting better and had a lot of chest pain. So had an urgent head x-ray and CT of her scapula and upper thoracic area. No call from the GP so all must be okay.
The point of this is if you feel you should go to Hospital then go, I used to be an Ambulance Volunteer and should have known better, it lead to over a week of worry for me which could have been avoided if we had gone.
She is also having a hard time coming to terms with the fact that she may not be able to sew any longer, due to the Cerebral and CNS complications, she loves sewing and this has really brought her down. We have been talking about her getting back into knitting and crocheting for charity causes, which I think will help.
So where was the “smooth” in all of that I hear you ask, well we still managed to get out for a little bit and saw some whales in one of the local bays.
Me, I have been starting a new hobby of restoring Antique and Vintage sewing machines to fill my time, which I am loving hopefully I get raise a bit of cash along the way, although it will be nice to see a collection grow.
Hospital appointments, doctors appointments, hair appointments, blood test appointments, I guess you get the picture.
So the last couple of weeks have been quite busy, but some good news is that Julie’s recent eye tests came back good, no general issues, no macular issues and no issues from the field test. So that is that for another year woohoo!!
Now got a great Rheumatologist for her, who has diagnosed her with more Antiphosphilipid Syndrome than SLE. So we are now trying to wean her off some of her medications, which has pleased my warrior immensely. Now waiting for a Neurologist appointment (yep she has finally gone mad….lol), to look into cerebral/central nervous system issues. Will have to bring up a piece I have just read where a medicine called Rituximab seems to have had some beneficial effects for this issue. That is the other thing a carer needs to be on top of, looking at available resources for information that may assist their warrior in having a better standard of care.
So what has this meant for me as a carer, lots of mileage to an from appointments, lots of “Admin bitch” time coordinating all of these appointments, which in itself can be a challenge. So now we have a bit of a quiet period (or we did until I used the “Q” word), to enable us to catch up on some things.
Julie is looking to make a doona (quilt for non Aussies) based on Lupus butterflies to auction for Lupus Awareness month, which in Oz is next month. I am looking to do some awareness raising by having a stall in our local shopping centre with banners, leaflets etc. Hopefully Julie will be able to come so that people can talk to a Warrior.
I am looking around the house to find stuff we don’t really need and putting them up on local Facebook sale sites for donations to the Lupus Foundation of Western Australia. (note to self, check with Julie before selling anything)
So emotions, back when Julie and I met these were not top of my list. Being in the British Army for 15 years knocked all emotions out of me, we compartmentalised everything and emotions where locked away in a box at the back never to see the light of day.
I think all carers need to have, and not be afraid to show, a range of emotions…..except anger. I have to admit that if Julie was in the same situation now as when we met it would have been hard for us, Julie is (and always has been) a deeply emotional and loving person and I was a lump of rock when it came to communication and emotion.
Some would say that caring for a Lupus Warrior is like riding a roller coaster, well I can understand that with all it’s ups and downs, twists and turns, but a roller coaster is easy to manage. Lupus goes way past that and that is why we need emotions.
Unless you allow yourself to show emotion how is your warrior going to know how you are feeling. Some may say “but I have to be strong every day to care for them”, not true. You are allowed to have down days, tired days and frustrated days, and when you do tell your warrior and they will do their best to look after you.
So if, like I used to be, you have trouble with your emotions and feel that showing them will make you less of a man, GROW SOME BALLS, emotions are part of who we are they are what makes us human and not rocks. The other thing is don’t try to change over night, it is better to take baby steps as it will come as a shock to your warrior that you are showing these strange things. They will be wandering what the aliens did with their carer. Don’t worry it will come eventually and you will have a better relationship because of it.