@Former-Member @Shaz51 @Faith-and-Hope @Former-Member @Zoe7 @outlander and anyone else who may have been reading along. I realise this is a fairly long post, and I hope I dont bore everyone's socks off!
It's been a month since my last update here, so I thought it was about time to post an update as to what's been happening in my Carer world lately. My lived experience issues have been taking up most of my head space lately, so I feel a need to try and switch focus somewhat. So here goes ....
Good news first - hubby had his 3-monthly scans and blood tests a couple of weeks ago to check on his cancer status. We saw his oncologist last Thursday, and he delivered the good news that hubby's 'terminal cancer' remains in remission. The immunotherapy has done what it's meant to do by making his own immune system attack the cancer cells which had spread to his lungs. So it is a really good result! Of course, they can never say it's cured, because once cancer is Stage IV and spread to your internal organs, it is always a possibility that it will return. But really, for the time being at least, it's the best result we can hope for. What has been 3-monthly monitoring scans has now been extended to 6-monthly, so that's another good thing. The scans which he fears so much, are no longer to be as frequent.
So that piece of good news gave hubby a real boost for a couple of days, it was good to see. He even started to talk about going away with his good mate for a few days on a golf trip some 10 hours drive away. This is a golfing group he has been going to for something like 28 years now. He did not go last year because he was so unwell, but he has been to every other yearly trip. He's the one who instigated the trip initially, with a number of fellow business people taking a weekend away to play 3 days of golf. There are between 24-36 men usually attend, and it's at a different location each year, with a couple of years even being overseas. Hubby will not be able to play golf of course, but some of the guys have been trying to encourage him to attend and get around in a golf cart and act as 'starter' for the competition. While he was feeling a little more positive after his oncology appointment last Friday he finally agreed to go, and I sent off his money for his accommodation and meals. He will travel and share a room with his good mate who lives across the road. I'm confident he will keep a close eye on him, so he will hopefully be okay. I need to have a serious talk to his friend beforehand though, because I don't think he fully realises how much assistance and how reliant on others, hubby really is.
The fact that hubby was feeling positive enough to commit to going on this trip is a good thing. Normally he goes away with a group of his mates at least 3 times a year, plus this golf trip. And it's now been over 18 months since he's been anywhere at all. It will do him so much good to get away and spend time with some of his old buddies and former business colleagues. To be completely honest ... the few days break will do me the world of good too.
With regards to his Parkinson's Disease? Well that continues to be a day by day thing. One day he seems to be showing some improvement, then the next he goes downhill again. So very up and down, a real roller coaster ride. And with it, the depression is also up and down like a yoyo. I think overall though, he is making some slow progress. But because it is slow, he doesn't really notice it himself. He's just impatient to be better NOW. I took him to his appointment with his Dermatologist yesterday, to check for more skin cancers and melanoma's. This is something he needs to have done at least every 6 months because of already having melanoma, but also because his Parkinson's disease means he is 9 times more likely to develop melanoma than the average person. Interestingly his dermatologist commented that he was looking so much better than last time she saw him. I think that gave him a bit of a boost too. I said to him "see - other people are noticing that you are indeed looking much better". But of course I could tell him that a 100 times and it would mean nothing, but if someone else does ... it counts.
The Parkinson's Disease (PD) is a difficult one. So many things affected which most people are not aware is even a symptom of PD. Simple things like Depression, Constipation, Eye problems, Inability to Swallow ... all very typical for PD sufferers. But the one thing which bothers him the most is his lack of mobility and balance. The medication helps mainly with slowness of movement issues, and I can see improvements in this area. Even simple things like facial expression, eye blinks, etc have improved. His mobility however, does not seem to be improving much at all. He still leans heavily on me for support if we are out and about. If he needs to walk more than about 20 meters, he is almost crawling by the time he gets there. He shuffles, he leans and stoops, then his feet cannot keep up with his head and he almost falls.
He hates to hold onto me when we are in public though, and he refuses to use a walker. So he does the best he can on his own. Yesterday I was unable to get a park immediately outside the Drs and nowhere to drop him off in front. I parked about 50 meters from the Dermatologist, ran around and helped him out of the car and held his elbow as we walked there, just to offer some support without being too obvious, which would embarrass him. We were almost there, before he failed to pick his feet up enough to step up the one shallow step he needed to negotiate to get to the door. Thankfully I anticipated it and managed to keep us both upright, but it was touch and go. And ouch ... I've managed to wrench my back and shoulder in the process. It would be so much easier if he would agree to use a walker as support. He is a proud man though, and continues to refuse to do that.
My Mum and Dad continue to struggle at home. Dads GP is pushing for numerous treatments and tests he considers necessary. But Mum refuses to make appointments or cancels them if the GP makes them. She tells me "he's old, what does he need that for"? I really don't know if she is intentionally withholding treatment in an attempt to hasten his demise, or whether she feels it's just all too hard to get him to appointments. Perhaps that could also account for the fact that she is so haphazard with his medications? He is on blood thinners, and when she finally took him to see his GP recently, they were horrified that his INR readings were so bad. I think Mum doubles up sometimes then misses other doses. I know she is concerned that she may predecease my Dad. He is a difficult man in many respects, and she seems to think none of us are able to handle him if she were not around. Perhaps her motivation is noble, but I think terribly unfair. The aging process is a difficult and sad one.
Mum has an appointment next month to get approval from her GP to retain her driver's licence for another year. I am hoping that her GP is aware of the clear dementia signs she has been displaying. But I fear that is not the case ... she is good at hiding her difficulties or glossing over her failures to those who do not see her often. I've spoken to my sister and hoping she will go with her on the day. Honestly she is dangerous in a car! She goes too fast, does not look, and gets lost even in her small country town. She loses house keys, garage keys, car keys. She forgets where she has left her car. When she parks she does so up kerbs, in gutters, on footpaths, etc. She is dangerous to herself, other drivers and even people on footpaths. I sure hope the GP can see that. But I also know Mum will be devastated if she loses her licence. I'm trying to prepare her for the possibility, by gently talking about alternatives if she were unable to drive. But she won't hear of it.
Okay, I can hear hubby stirring at last. I'd best go get his medications ready and some breakfast happening. It's so hard cooking for him these days, as he has no appetite at all and more often than not, he leaves most of what I give him. His Parkinsons medications also causes a lot of nausea, which doesnt help. Doesn't give me much incentive to try and cook good meals though. Because of the medications he's on, he hasn't lost much weight so far. Although I have ... which is something my psych commented on when I last saw her. Maybe I can tempt hubby with some poached eggs and tomato on toast this morning. If he wont eat it ... Holly and I will.
Sherry ☕🌺🌼💕
It must make it so hard that he won't use a walker and has to rely on you to help him get around. I hope your back is okay and you haven't done too much damage there - it is definitely not what you need right now 
