Supporting an already Depressed Partner through Cancer diagnosis

I'm alright tonight thanks @outlander

Would love some company, but am very tired and dont think I can keep my eyes open any longer.

Been a long and exhausting day, so I think I need to lie down and try to get some sleep.

Plus got a raging headache and have taken something for that.

So I will say good night. My apologies for not being around much. I hope to get back to some normality tomorrow.

See how I go. I also need to call the hospital to try to get some sort of answers as to how much longer our wait is likely to be before a bed is likely to become available so hubby can be admitted and assessed. Really hope its soon, as his health is continuing to decline. Not quickly, but its noticeable.

Thanks sweetie for offering to keep me company. Its very kind of you. Perhaps you also want some company, and I am very sorry I'm not up to providing it. Talk more over the coming couple of days. I will also update everyone here as to whats happening too. Thanks everyone for your messages and apologies I've been so slack at responding. @Sophia1 @Former-Member @Shaz51 @Zoe7

Sherry

Thanks @outlander

@Shaz51 @Former-Member @outlander @Faith-and-Hope @Zoe7 @Maggie @Sophia1 @Starta @Peri

So, an update on what's been happening since my last proper update a little over a week ago. And I thank all of you for your responses over the past week or ten days since that update.

Well there's still no word from the hospital as to hubby's admission under the neurologist's care. They said a bed would not be available until after Easter, but they never said how long after Easter. I phoned them a little while ago to ask if they have any more of an idea as to when it will be, and to remind them that we are not local and therefore a bit of notice to organise to get there and to secure accommodation for me would be nice. Nobody answered, but a recorded message asked me to leave a message, which I did. I suspect I won't get any satisfactory answers, but at least I feel as though I've tried.

I feel like I need to push the envelope a bit as hubby continues to get steadily worse and I'm becoming increasingly worried. A couple of days ago the pains in his head got really bad and he collapsed in a heap sobbing. He told me he was scared. This is really difficult for me to deal with ... seeing a man who has always been so strong, so commanding and in control .. to now be in this state. And it's all happened so quickly, offering no time for adjustment. I feel so useless in knowing there is nothing I can do about it. I have no control and no ability to make things better or treatment to happen sooner ... I just have to sit and wait ... and watch the continuing decline.

On a good note ... hubby got his wish to attend this year's ANZAC day commemorations in our local town. He was in hospital this time last year, so missed ANZAC day for the first time since he served. It was very important for him to get there this year. It was quite a process though, and took some planning to make it all possible. I dropped him and 2 of his military mates off as close as I could to the seating, then left to find a car park. We were nice and early, so managed to get seats in a shaded area, which was lovely because it was fairly hot yesterday.

Hubby can barely walk 30 meters before needing to stop and rest. Thankfully, the public are very helpful kind and considerate when they see war veterans with a chest full of medals clearly unwell and struggling to stand up. Several offered up their seats along the way for him to have a short breather before setting off again. It's really difficult as I know how hard all this is for him ... he is a very proud and somewhat vain man. I looked at him as we made our way through the crowds yesterday, as I held his arm to help support him ... he looks so very ill, weak, pale and fragile. I couldn't help it ... I had tears streaming down my face. Thankfully I had dark sunglasses to hide those tears, and walked slowly along with my head down. I'm so pleased that I managed to convince him to use a walking stick since about 5 weeks ago. He goes nowhere without it now, and it offers him just a little bit of stability and confidence, which is very much needed.

Thankfully once the ANZAC ceremony was over, the rest was relatively easy. Just a matter of me running back to the car and returning to pick up hubby and his three minders as the road blockages were unblocked. I drove them all to the RSL who put on a nice lunch and a few free drinks to members and their wives/carers. So that was nice, and I even had a glass of wine with lunch. At least once I got hubby inside and seated at the table, I could relax for a bit. He could stay seated until we left. It was really good for hubby to be able to mingle with his mates and fellow veterans. It was lovely to see them all make a fuss of him, and of course he loved all the attention. There is a close bond among those who have served together in avenues of war, and you really see it when they can see one of their own clearly so unwell. They were there for him yesterday for whatever it was he needed.

So it was a good day for him. When I got him into bed last night, he said to me 'thanks darlin' for making today happen'. Then he was straight off to sleep. Today he is suffering, with his big day out clearly taking a toll. He has been in bed all day so far, except being up briefly for meds and breakfast and again for meds and lunch.

I hope the neurology dept of the hospital give me a call back soon. I'm becoming impatient, and concerned about having had to wait so long for proper assessment and treatment. If it is encephalitis that he is suffering from, it could be doing permanent damage to his brain, each and every day, while untreated. In some respects it would be much easier if he just got marginally worse, and then I would have no choice other than to rush him off to accident and emergency. Then things would have to be done, and a bed in the city hospital made available. But he just isnt quite there yet ... marginal I'd say.

So the watching, constant assessing .... and waiting ... continues for another frustrating and worrying day.

Sherry 💕🤗🌸

So much waiting and uncertanty @Former-Member and that is taking it's toll on both of you. I am glad you rang the hospital and left a message - hopefully they get back to you quickly and there is some good news. It must be so incredibly hard to watch hubby go through all this and know he needs to get checked out in hospital but is not 'sick' enough to go to A&E. I hope that is doesn't get to that stage for either of you.

It is great that he had such a good day yesterday and even better that he thanked you for taking him - that little bit of kindness can go a long way

Sitting with you as always Hon. Hugs and hugs

Sending gentle thoughts your way @Former-Member

sending you lots of tender hugs @Former-Member

@Zoe7 @Former-Member @outlander @Shaz51 @Faith-and-Hope @Former-Member @BlueBay @Owlunar @Maggie @Appleblossom @Ali11 @Peri @Starta

I saw my psych on Wednesday afternoon. She had been away for a few weeks, so it had been over a month since my last appointment. We covered a lot of ground about all that's been happening over the past month or so, and how I was feeling about it and whether I was coping. It wasn't until almost the end of the session, that I told her about a few new things which have been bothering me.

I explained that I've been getting a lot of feelings of helplessness, loss of control over my life, and being angry at the world and everything in it. I went into a fair amount of detail with her and gave examples of when and why I feel those things. After listening patiently to me, she said it's highly likely I'm experiencing carer burnout. Just what I needed to hear, on top of everything else I've been contending with.

Dealing with my Mum and my Brother from afar has been tough, and I so wish I could do more and be there for them. But with hubby, I am here doing as much as I possibly can to be a good wife and carer. And nothing I do is making any difference. He has been so sick now for 18 months, with successive diagnoses of Stage IV Cancer in October 2017, autoimmune encephalitis in April 2018 and Parkinson's Disease in October 2018. Now it's looking like another bout of encephalitis. So it just hasn't let up, it's been one thing after another. And each diagnosis is serious and life threatening, and needed difficult and long term treatments, much of it experimental.

I constantly feel overwhelmed and unsure about all I need to do, dead tired from inadequate sleep, and starting to believe that the situation is hopeless and that nothing is going to make one iota of a difference. I fear that I am going to lose him, and I'll be all on my own. His Stage IV cancer is essentially terminal ... despite being in remission now, it's always going to be there ready to rear its ugly head again. Parkinson's is a progressive mental illness ... we know it doesn't get any better, it will only ever get worse. Parkinson's Disease is not fatal, but it makes life progressively more miserable and difficult. The acute encephalitis can be fatal, but is very much treatable, if only they would assess him and treat him appropriately. But let's face it, he isn't ever going to be well ... ever again.

His illnesses have caused a very distinct change in roles for us. I now have to make all the decisions, do everything which needs doing, drive everywhere, plan everything ... I essentially do everything, as I'm responsible for everything.

My psych said I'm putting unrealistic expectations and unreasonable demands upon myself to do everything. She says I need to delegate and allow others to do more, and not retain sole responsibility for his care and wellbeing myself. But this is really hard for me to do. I already find it so frustrating with the lack of control I have in getting adequate specialist medical help for hubby. My lack of success in that regard has resulted in strong feelings of inadequacy, and the belief that I have failed him. So therefore that means I am not good enough, and in my own mind I need to try harder and do more. So I take more on and try to control more things. Which only leads me to think that I am even more of a failure, and I then feel guilty about it.

I'm physically and emotionally exhausted after so much illness and tragedy surrounding me over the past couple of years. I cannot remember the last time I actually slept more than a couple of hours in succession. I'm sad and miserable and lapse into tears at the drop of a hat. I've withdrawn from the very limited friends I have, or had. They don't live near me anyway, but I used to keep in touch via phone or email and a visit once or twice a year. Now I don't even return their calls or emails. No wonder I have no friends.

I'm irritable or angry all the time ... about everything ... or nothing. I snap at everything ... I crack up over the slightest little thing. I'm a horrible person, and I hate being like this. I'm an ungrateful, self centred, deplorable and useless person ... and it's awful being me right now.

I feel guilty that I'm angry about so much. Some of big stuff is understandable. I'm angry that hubby is so dreadfully ill; I'm angry that life has been so full of heartache and tragedy for my brother and his wife; I'm angry that I've lost both my nieces so young; I'm angry that I have to wait so long for the care that hubby needs; I'm angry that I cannot visit my ailing parents because hubby is so sick; I'm angry that some bastard assaulted me 23 years ago and destroyed my life; I'm angry that I cannot get over that; I'm angry that I cannot get a decent sleep; I'm angry that I'm powerless to change anything; I'm angry that my life seems to be on permanent hold and I'm angry that I sometimes (fleetingly) think of ending it.

Then there are all the little things, insignificant selfish things which I'm ashamed to admit that I'm angry about. I'm angry that I have no ability to do things I'd like to do; I'm angry that we cannot go away on a holiday once a year; I'm angry I cannot get away for a few days to visit family; I'm angry that I have to tell hubby things 3 or 4 times before it sinks in; I'm angry I'm unable to make an appointment to see my dentist or GP because we're waiting to hear from the hospital; I'm angry that I cannot book our car in for an overdue service because I don't know when I'm going to need to use the car; I'm angry I have to go to every one of hubby's many and varied appointments; I'm angry that I have to drive all the time; I'm angry that he relies on me when I don't feel I'm strong enough.

For goodness sake ... I'm even angry that I have to make the bed 3 or 4 times a day after all his sleeps. How selfish is that? It's not as if he can help it. Besides ... he wouldn't care if I made the bed or not. It's my problem that I feel I have to do it. I think it helps me feel in control of something, knowing that everything is in order. It's something I can actually do, it gives me a sense of control over something. I certainly haven't had any control over anything else in a long time. But I'm angry that I feel I have to make the bed 3 or 4 times a day, and I hate that I'm angry about that.

My psych seems to think it's all a pretty clear indication that I have lapsed into carers burnout. All this anger and resentment is not the normal me. I'm generally calm, kind and reasonable. But I don't feel that now. I'm angry, uptight, highly strung and constantly on edge. Caring for someone with a progressive chronic mental illness is not a sprint, it's going to be a long term challenge for both hubby and I. And I think I am going to need some ongoing assistance in doing that.

My psych said that carers burnout is actually quite a serious thing, and that she wants to see me in 2 weeks to talk about it more and work out what I can do. So I see her again on Wednesday week, all going well and I'm here. So overall it was an interesting session, if a little upsetting. As we only got onto this issue of Carer Burnout at the end of the session, we didnt go into a lot of other details about what may help. My psych asked if there was anything I could think of that I could delegate to others, or get some outside carer support in for. I couldnt think of anything at the time.

Anger, either expressed or held within, is an ugly and defeating emotion. I would love to know how to get through it, so any sugggestions about that and also learning to delegate, would be much appreciated.

Sherry 😠:angry_face_with_horns:😢