Hi Elizabeth

Just jumping online quickly - wondered whether www.patientadvocates.com.au would be helpful to you?

Thanks Annie, I looked up the website but don't think it will help It would be yet another person to explain everything to and make more work.The Nurse Unit Manager spoke to me today to say they receivved my complaint & it had been escalated to the head doctors in the hospital. She thanked me for the complaint as hopefully it will stop this happening to others.

Husband comes home tomorrow even though he is worse than when admitted. They have decided it is too risky to do any more investigations or treatment. The one test they did do showed a marked deteriration compared to last year so there is an increased risk of aspiration pneumonia which he;s had several times and each time is more serious.

I saw my psychologist today. It was a difficult session as I was struggling to talk because things feel so hopeless. My task for this week until I see him next is to do enough to keep myself & my husband alive!!! It was confronting to have him confirm how bad I am at the moment but at least he understands it. I'm normally the type who pushes to keep going & does what I can to help myself get better so so being told I'm too exhausted & vulnerable to even try to help myself was hard. I don't know how it will be with my husbad home as things have gone downhill so much fo him.

Dear Elizabeth~

Like you said in another thread "I've no answers" either. I care and can sit beside you in my mind, you are not alone - you know that already from others.

The only thing I'm certain of is you are as strong as they come.

Croix

Thanks Croix, I appreciate your support even if it is just knowing someone cares & is listening. I disagree with your last sentence. At the moment I feel weak & vulnerable. I don't have the strength to fight this any more. I overreact when even little things go wrong.

My husband is home. He is much better at home but I'm still trying to sort out the next steps. Trying to make appointments & thinking of having to explain the situation to try to get better help/advise feels overwhelming.

Dear Elizabeth~

"I disagree with your last sentence"

You wanna have an argument?:)

It is precisely when you feel as you do now but keep on trying the best you can that IS strength. Overreaction is pretty standard too, a gift from anxiety. I have that and it can take someone else to give me perspective and a more realistic approach.The more stress the more it happens.

As you no doubt will be talking to a variety of different medical people do you write out a set of case notes for them to read -or you read aloud? That might make it a litle easier for you each time.

Croix

I requested a full discharge summary including results of test which were performed. This will be sent to the GP. Can't get it in myself!!!! I will get this from the GP to take to other specialist appointments so they don't waste time redoing the same things. We see his speech Pathologist on Tuesday. Hopefully she has a hand over from hospital SP. If not she will ring to request one immediately. She will discuss what has happened & help us come up with a workable plan to manage situation. I might get her to help us write a list of the issues needing to be addressed. I'm too emotionally vulnerable to be effective on my own at the moment.

I don't think we're allowed to argue & I'm not in a position to argue effectively because I'm not strong enough!!!!

Your comment You wanna have an argument?:) sounds like something my siblings would say. Even my grandkids have a very cheeky sense of humor so your comment reminded me of times were we stir each other in fun. I need to go to bed & hopefully sleep

Dear non-arguing Elizabeth~

I think your idea of having either the speech pathologist or some other professional help you write down the points that need addressing is an excellent one. Sometimes one can omit things just due to pressure.

Are you familiar with the Monty Python Argument Sketch? It's available on YouTube is you wished to refresh your memory

Croix

I've never seen Monty Python.

Well, maybe not everybody's cup of tea but most find some parts enjoyable. I suspect the silliness of the argument scene might amuse you

-C

Sorry I sounded abrupt in my previous post. I'm just struggling to manage all the competing demands while trying not to make myself worse by doing too much or feeling worthless because I neglect essential things & then get into a bigger mess. I'm a lot better with my husband home but still very fragile & exhausted. I can't ask for help because I don't know what will help me. The effort of thinking what I need is too much.

I never watched TV as a teenager or young adult. When my parents bought a TV I left the room whenever it was switched on. Someone bought us a TV years after we were married because they felt sorry for us because we didn't have one when we chose not to buy one. I don't know why I was so funny about TV. I remember my parents trying to make me do 'fun'activities like go to the cinema because they thought I was too serious & spent too much time studying. I avoided all comedy at the same period and still don't enjoy most comedy. I know this makes no sense.

DDear Elizabeth,

Don't give it another thought. As I sit with you sometimes I think of an idea worth exploring, if it does not fit no harm done.

Not knowing what will help is a problem, which is why I thought your suggestion of the speech pathologist making a list was a good idea. Combined with your thoughts on reading it you may end up with something of value.

Your taste in TV and comedy requires no explanation, it is simply you, and that's fine. I am different, I remember seeing one of the first TVs of the 50's, which was small, round and green. It belonged to my grandfather and was patently uninteresting to a small boy.

Croix

Thanks Croix.

The last 2 days have been full on. My head was spinning last night trying to work out how to manage today without forgetting anything important & trying work out how to get between appointments on time. I kept waking up during the night because of the stress. Despite this we have been successful. I managed to make a number of important calls to book things. Plumber arrived unexpectedly to look at the house to work out how to fix some things which he finished today. I hope it has worked. Need to wait for next downpour to find out!!!!

Then had an appointment with someone assisting my husband to use technology for the blind. Had thought of cancelling but didn't get around to it. Session proved very valuable as she taught me a lot so I can help him remember what to do. This was followed by useful but intense session with speech therapist. We reviewed the events in the hospital & then discussed plans for the future to avoid a repetition of the problems. While she was there I managed to arrange an appointment with a specialist for today. This meant cancelling another appointment & meant my psych appointment had to be cut short but the alternative was a long wait.

Today I saw the therapist re exposure therapy. I had typed up a summary of my issues & what ad affected me as well as what I need to achieve. This was rushed because of the extra stuff that needed doing but it helped. I gave it to him at the start & tried to explain how I felt. This helped as he focused on putting the events into perspective & gave me some things to do at home to help reduce the anxiety & the negative thoughts associated with the events.

Then saw my normal psych who focuses on the normal stresses. He made some suggestions but I need to work out how to follow through because they are not easy. Finally saw husband's specialist. Pretty intense session explaining what had been going wrong but he'd read all the reports I'd arranged to be sent by the GP & Speech therapist including hospital reports. He still had access to all the earlier tests & reports from 5 years ago. He has asked for a surgeon to review my husband to see if surgery is worth trying. At leat my husband knows this specialist is doing his best to find the most effective solution even if it turns out there is nothing that can be done.

I need a quiet night to think about nothing!!!!

Dear Elizabeth~

That sounds an amazing couple of days, with a lot accomplished both for your husband and yourself. It really helps if the specialist has read up on the matter before you get there, a hopeful sign.

How would your husband feel about an operation?

A pity your therapy session was cut short, but being so organized and having a typed summary may well have made up for that.

It's true, Access Technology training from Vision Australia or some other body to use technology assists both the person and the carer, it gives you specific knowledge of how to help.

I do hope you can mange some rest this evening

Croix

Hello Elizabeth

I really wish I had your strength. You are proactive with not only your own well being yet also your husband and your son combined. Good on you for persisting with the counsellors too :-)

Croix is spot on when he posted... on Jan 23...

"The only thing I'm certain of is you are as strong as they come"

my kindest always Elizabeth

Paul

Thanks Paul & Croix, I wish I had the strength you think I have. I cope when things are going OK or I have the support I need to manage difficult things. The speech therapist is so helpful. Sessions like this week can be stressful because she's not afraid to ask hard questions & bring up very confronting topics like what will I do when my hsb faces a life or death decision what do we do. Having her support to talk through issues and get her advice & support really helps me. She's often rung other health professionals on our behalf to ensure they understand hsb's needs.

Paul if I said what you did you would tell me off for judging. We are all in different situations with different strengths & weaknesses so can't compare.

I am going to a friends overnight to have a break. Hsb will come because I don't have the time or energy to arrange carers for him but at least I'll have my freind to take my mind off problems

Dear Elizabeth~

"I am going to a friends overnight to have a break." A good thought. I hope it goes well.

I'm very glad for you that speech therapist is so proactive, sensible and thoughtful, someone like that can make a huge difference, it's great she came into your lives.

Croix

Hello Elizabeth

This is your thread topic and can say whatever you wish to me and I would never think you are judgemental at all....as you mentioned we are all different and experience varying degrees of life events

What did I say?......just asking if thats okay :-) Im just a volunteer on Beyond Blue sharing my life experience as you know

Good on you for taking a break with your friend..and your hubby too Elizabeth

my kindest always

Paul

Sorry, Trouble with the forums is your not on real time so you say what you think is obvious & then realise you've given the completely wrong impression.

You said I really wish I had your strength. Implying you are weaker than me. In other words judging yourself based on what you think I'm like. I meant you would tell me off for putting myself down I didn't mean anything bad about you. You do your very best to help everyone based on your own experiences. I really appreciate your input. Sorry for implying you'd done something wrong. sorry I need to get to bed so can't say anything more

I'm still very much up & down & very fragile. Usually I set goals & just push through to get there but no longer have the strength or willpower to do this. Yesterday I went to the Carers Gym which I normally find really good but I had no energy & had to force myself to do the exercises which led to me breaking down. Later I reacted really badly to something my husband did. My reaction was way out of proportion & certainly didn't help either of us. I'm struggling coming to terms with being so mentally unwell. Before I knew I was depressed & had some anxiety but I would 'get over it once things settled down." I would try to exercise & do the things needing doing so I could feel a sense of control. Regular visits with my psych helped keep me on track or get out of a hole after things went wrong. Now I feel hopeless as nothing works or I get a tiny relief when things go OK but the smallest thing sends me over the cliff. Feeling this bad is scary because I have no options. I can't afford to get sick & go to hospital because my husband needs me. Having seen what has happened to my son once he's linked with the mental health system is very frightening.

I did speak to someone today who is going to try to arrange some help but unsure when that ill happen. Ineed help now to stop going over the edge

Dear Elizabeth~

It is frustrating, worryng and sometimes even frightening when one hits a particularly bad patch any any little thing seems to trigger a huge reaction.

I would imagine your husband would take that over reaction as waht it was, a stressed person having difficulties.

Do you have any news about help as yet?

Croix

Hello Elizabeth

No worries at all! I was only giving you a compliment....Its all good...Sorry If I was awkward in my post

When I mentioned I wished I had your strength it was acknowledging how well you have been doing under such prolonged and difficult circumstances...

Croix mentioned the same a few posts ago with "The only thing I'm certain of is you are as strong as they come"

Can I ask how you have been sleeping? (if thats okay)

I do hope you find some peace soon Elizabeth

Paul

Thanks for your encouraging posts including your complements even if they are totally untrue. I see both you Paul & Croix as incredibly strong caring people who have dealt with a lot but are still willing to use your experience to help others.

My sleep seems really bad this week. We got a new bed through the NDIS a week ago so we can sleep together for the first time in years while enabling my husband to adjust it to suit his needs. I'm not used to the matress & keep waking up. Also I've been busy trying to sort out a lot & trying to work out what to do to help me cope better. Even my pillow feels like a brick at night even though its normally comfortable. Since I don't have enough to deal with I broke my foot on Thursday so spent time in emergency getting XRays etc so late night. Last night we babysat so that was another late night. The kids were fine but we had to wait up until the parents picked them up. The person who came the other day to see what help I needed rang back yesteHe is trying to get me into a retreat in April as that is the first available. I need something sooner but at least this will be something to look forward to. I need to go as I'm exhausted.

I am trying to get through each day. Sometimes I'm more effective than others but still find myself getting extremely tired even doing simple things.
I got a message from my psychiatrist cancelling my appointment. I normally go every 4 weeks but he cancelled in early Dec then next 2 appointments not available because of his summer break and now cancelled again making it 5 months between visits. To me this is wrong since he started me on new meds but left me with no support. I have stopped the meds but it would have been better to have support to discuss the options. I need ideas to get me out of the hole I'm in. The slightest little thing seems to send me spiralling down rapidly. Things I normally find helpful don't seem to work at the moment

I’m so sorry your phychiatrist has canceled on you so many times and I’m probably a poor substitute to him nor I am I a professional but if you would like to & if it would help you in any way I’m here if you want to chat before you see him again or if you ever have enough and find someone new. As sometimes I find talking to someone helps me feel better but I’ll leave that up to you. But please don’t feel inclined to if you don’t want to or feel like you have to but I thought I’d put the offer out there in case you want to talk to someone who’s neutral 🤗

Thanks Mocha, When I see the psychiatrist he is good but these long gaps are really bad. Problem is they won't reschedule but just stick to the original 4 weekly appointments. I had the same problem last summer and ended up missing about 7 appointments because I couldn't get to one& then he cancelled a couple more on me in May June. Maybe I give up on him & only see the psychologist.

Summer is the worst time of year & this one has been very bad The psychologist also has time off around Christmas but not as long. This gap meant I couldn't get help when I needed it so I;ve ended up worse than I've ever been, The smallest trigger seem to really set me off & I over react to small things

Hello Elizabeth, thought I would pop in and see how you are getting on and what is happening in your life at the moment.

I am unable to give any suggestions or anything, as I just do not have any.

However I know you said you were tired on the walking thread. So many things seem worse when we are tired. Often I cannot even think properly. I may be irritable and definitely may over react to circumstances. Have you considered this may partly be the cause? Maybe?

Anyway I am also listening to you also

Hello Elizabeth

I hope you have been doing reasonably well! I know when I (or Croix) post a compliment its true...so there ;-)

Thankyou for the wonderful compliment Elizabeth " I see both you Paul & Croix as incredibly strong caring people who have dealt with a lot but are still willing to use your experience to help others" I also see Croix as an incredibly strong person too...yet I dont think I am incredibly strong at all

I still think you are an incredibly strong lady who has done everything possible to help your husband and family as well as you do

Paul

Dear Elizabeth~

I've been quiet for a couple of weeks because I've had the luxury of time off, something you might not get for another couple of months. I guess the good news is that break does help - often a lot, so I'm crossing my finger it comes off in April as planned.

Sorry about your foot -how did you manage that?

The bed -a win from NDIS many would simply not believe - will sort out I'm sure, a question of adjusting position and bed clothes, pillows etc until it is good for you. With the sleep that's another thing. My wife does not like air conditioning so I use a fan just on me, maybe something like that can help. I even find the sound lulling.

Reacting to every little thing is pretty normal in your situation, unpleasant, but please don't take the next step and feel less of your self as a result, that's simply undeserved.

A psychiatrist that allows big gaps for whatever reason is basically unsatisfactory, and frankly I've not found psychologists a good all-round substitute. What are you feelings about a locum?

Ta for saying I'm strong, yup, I'm often mistaken for Arnie.

Croix

Thanks for your replies. I want to reply properly but it is late &I need to sleep. My plans went out the window tonight when dtr rang wanting help with a job application which took me hours & meant the other essential things got left, Application due tomorrow so no choice.

I wish I could feel more confident helping her because I want her to get the job. She lives in UK & I want her back. I miss her!!!

Will talk more when I get time

Dear Elizabeth~

Don't give it a thought, you only reply when you want and are able, so often real life unexpectedly intrudes.

I wish you daughter good luck with that application

Croix