Something’s not right
Dear @Former-Member @Faith-and-Hope @Shaz51 @Zoe7 @Determined @Maggie
Thanks so much for your recent messages of support and care. Its much appreciated. I apologise for not being around in close to a month, but there has been so much going on that I have been feeling very overwhelmed by everything.
Since my last update close to 4 weeks ago, a fair bit has changed, and yet much is still the same.
My Dad remains in hospital after the series of strokes he suffered almost 4 weeks ago. Though he has been transferred from the Canberra Hospital back to his small home town hospital where he is closer to family. He has improved somewhat to where he was at, and is no longer considered to be acute care. So something needs to happen by this Monday when the 28 days comes up where the hospital can no longer keep him without charging something like $60.05 per day to stay. Trouble is, they dont consider him well enough to go home. His mobility is badly affected and he is unable to walk without the aid of a wheelie walker and a nurse to accompany him. He says that his vision has also been affected and that he is not able to see very well now, which would not be helping with his mobility either.
I finally managed to get away to visit Mum, Dad and my brother and family 2 weeks ago, and stayed for 4 days. It was so nice to see everyone. Though Dad is now so very thin and frail, its hard to see. Its about 15 months since I last visited, and Mum also has deteriorated noticably since then. Both in mental decline and physical as well. As Dads carer, she is certainly not capable of supporting him physically, and I also have my doubts about mentally too. Although she has Webster Packs for her meds for both herself and my Dad, she is all over the place with them. When I arrived, she'd used up all the nighttime and bedtime meds but a full week of the morning tabs were yet to be used. I'm not sure if she is using double the evening meds or just missing the morning ones. Either way, its a concern. Its also highly likely she's been doing something similar with Dads pills. So while I was there, I made some enquiries about rehab options for Dad if he is not making enough progress to safely allow him home yet. Sort of a transitional thing while we wait and see what happens, all in the hope he may make some further progress over time. But rehab would mean he would have to go away from his home town, and hour away to either Canberra or Goulburn. He has point blank refused that option. So I then made enquiries for respite care options in their small town. There are 2 facilities, but both full up and long wait lists. Again a blank. But I put in paperwork at Dads preferred place, and they added him to their wait list. Though they always offer rare availability to permanent care residents rather than respite, so that was looking pretty remote. I asked that they keep us on the list for permanent (high care) residency as well. Then handed any follow up to my brother the day I left to come home.
Good news ... My brother got a call yesterday to say that a room has become available for permanent care. Dad is refusing, but they will keep the option there until Monday, when the hospital will either allow him home (knowing he cannot cope, and this putting him in extreme danger of falls etc) or try to convince him to go into care. This is so so hard, when you have such independent and totally resistent parents! So hard. Anyway we are left with the situation where both Mum and Dad refuse to make a decision. Wait and see, they say. They dont realise that this opportunity may not come up again for a long time. And when he finally realises he cannot cope at home, and Mum also, that there may not be a place for him.
Anyway I got home a bit over a week ago, in time to get hubby to his oncologist apt last Thursday and his long-awaited neurologist apt last Saturday. Oncologist doing nothing until neuro assesses him, but one good thing came of that apt. No more anti-clotting twice daily needles! Thank goodness, after 6 months of it after his pulmonary embolism, I no longer have to attack him twice each day with a needle. I just have to remain vigilant of course for any signs of further blood clots.
Then we came to the neurologist apt on Saturday. It took him very little time to come up with what I have suspected for over 12 months ... that hubby has mid stage Parkinson's Disease (PD). He commenced parkinsons medication to help with the worst of his symptoms. No cure of course. Just another incurable to add to his list, along with CKD and Stage IV melanoma. The diagnosis of PD explains a lot, as well as why he wasnt making the recovery they would have expected since going off the Immunotherapy for his cancer. Its highly like his recent physical illnesses have contributed to the progression of the Parkinsons, especially the encephalitis he had in April.
So its been a rough week this past week, especially on top of eveything thats been going on with my Dad and rest of the family over the past month. Hubby is starting on a low dose of the medication for PD, which is meant to provide dopamine to his brain, which is not produced when someone has PD. After two weeks he doubles the dose, after which we should start to see some improvement in his mobility and shakiness.
Anyone who knows much about PD, would know that it is almost always accompanied by severe depression and anxiety. So right now, thats a major issue for hubby. He has his next apt with his psychiatrist in about 4 weeks, and no doubt we will be discussing his recent diagnosis with him then.
How am I feeling in amongst all this? Dont know ... kind of numb perhaps. I'm managing to do what I need to do here, and at the same time doing my best to provide support to my Mum, Dad and brother down South. Decisions, decisions. All very daunting. And hubbys PD is life changing, with the prospect of eventual wheelchair, delusions, paranoia in time. We have decisions to make, not necessarily this year, but definitely in years to come as we plan ahead for the likelihood of worse to come. But they call PD a 'boutique' disease, in that everyone has different symptoms. Some almost exclusively the motor and mobility issues, others more of the dementia, paranoia and delusions. If hubbys encephalitis experience is any guide, I'm thinking we will get that paranoia and delusions and dementia. Argh ... But hopefully the medication works in the short term, and continues to help over the long term. Though almost everyone experiences set backs after a few years, where the medication no longer works or starts to produce serious side effects.
So thats where I'm at. No sleep, worrying all the time, things churning through my head about solutions, no end to it all. Nothing I can do ... talk about feeling completely useless.
Sherry 
Your psych is being a great support - especially helping you out with the fees. Mine did that some time ago for me too and I broke down and cried when she did - it took some of the pressure off me financially for a while.
It is no wonder you have floods of tears at the moment @Former-Member - I so admire how you are staying so strong for everyone but you also need to look after yourself
I do hope the meds for hubby help with his symptoms and help move him out of the depressive thoughts - it is hard enough dealing with the physical symptoms but having to deal with the mental ones also is extremely difficult.
I am going ok. Still waiting to hear about when I can return to work - it is getting dragged out and getting to me but there is nothing I can do until it is organised. I will call them again on Monday if I haven't heard anything and then determine whether I need to get the union involved. Right now I don't even care if I go back but more worried about getting paid - I need the income coming in. Other than work there is not much happening - just getting through each day with no real direction at the moment but I am dealing with that ok.
