Coping with everything
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Ironbark – what a tough position you are in. As the daughter of the patient myself, I can understand where you are coming from. Luckily my parents are very open about everything going on with Dad, and want us to know everything said and done to help prepare us for what’s to come. My sister is also a nurse, and has helped immensely in the ways you are talking about. She goes to the appointments with Mom and Dad, and often thinks of questions that the rest of us never would. She also writes down questions for Dad to ask. It’s a good point that could be brought up to her – I think Lainy is right about talking to her – hopefully it helps.
Good luck… I’m thinking of you and your family – it’s a tough enough journey as it is for us “kids”, you don’t need the added stress of not knowing everything that is actually going on to make it more difficult on you.
Jen
Thanks Lainey,
You sound like a real honey yourself.
She is a bit of a control freak, and usually I just inwardly smile to myself and accept that that is just how she is. However this time I guess I’m just too emotional and not removed enough to see the amusing side of it.I agree that in the case of someone who is very unwell, as I assume Teddy is from your other postings, it is neccesary to take control and that this is done with the person’s best interests at heart.
I’m finding it difficult to cope with the controls in place because they seem to be more about her than Dad, and because Dad doesn’t get any say.Honey is a good idea, but I must say that I am very much a ‘honey’ type of person anyway. When Dad was first diagnosed I was extremely supportive to her, I prepared meals so that she didn’t have to cook when she asked, I ran errands for her, and I sat down with her while she cried and I thanked her for loving and caring for my Dad.
Her favourite word at the moment seems to be ‘I’, she had a huge hissy fit in the middle of the ward one day because she had to walk ‘miles’ to get to the motel that she is staying in. Concerned about where she was staying and her having to trudge so far every day, my husband and I offered to drive her there. It turned out that she was staying accross the road from the hospital, and it was actually further to walk to the car park to get the car that we would have used to drive her there.
I understand that she is emotional, and that this would be very difficult for her. I also understand that as the daughter and not the wife, I don’t have the right to barge in and take over. I have no intention of doing that anyway, but I’m a daughter first and a nurse second, and the main person I am concerned about is my Dad. All of these theatrics are causing him stress that he can do without.
As for the wrong information, as I said I’m not really sure that she is giving me that deliberately. If she is then I will not keep the fork in the drawer, even though I may dip it in honey first. I think (and hope) that it more than likely that she is misunderstanding the information that she is hearing from the doctors.
The day I was there when the doctors arrived I didn’t say a word, just listened. After they had left I found that there were a few questions that Dad had that I could answer, and I was also able to write down some questions for him to ask for his own benifit during their next round.
That is the sort of thing I think I could be useful for. I certainly don’t profess to know much about this or any other type of cancer, it isn’t my specialty.Her behaviour is just making a bad situation worse for everyone, even herself. But she really seems to crave the ‘poor me’ role. This and the rush to cash in on every bit of government money that she can get her hands on is driving me mad. Don’t get me wrong, I understand that govt subsidies are there to be used in these circumstances, and they are rightly entitled to access them, but it just seemed as though the money grab became more important than the reason it was needed at times, which I found very sad.
I simply don’t trust the information that I’m being fed at the moment, and this is adding to my already fragile emotional state. My sons are a great help, they just want me to shout at her.
I still prefer the fork….. that’s the nasty side of me coming out…Hello Ironbark, put the knife away and take out the jar of honey…dripping honey. This is just my humble opinion but perhaps she is a control freak and is afraid you may take some of the control away. With that said, she should not be giving you wrong information. Why not take her out to lunch and stay very calm, and put away all forks, and tell her that as his child, you have the right to know what is truthfully going on. Ask her why she says one thing and the doctors say another. Maybe you could let her know that becasue you are getting wrong information you have decided to spend more time with him. That could change her tune.
On another score, I make all the decisions here. I control the visitors, the times of visits and tell people to kindly not bring food as Teddy is not eating. She may be looking out for his best interest but I just can’t get my mind around the un truths. So, take a deep breath and kill her, with kindness!
P.S. Take her a boquet of flowers and tell her you appreciate how she is taking care of your dad.Hi everyone,
My Dad’s resection surgery was cancelled as his bilirubin levels were too high and he is glow in the dark yellow. As much as this in itself is upsetting, I know that the risks are far too high to contemplete risking losing him earlier just to get the surgery done.I’m getting all my information about his medical condition through his wife of ten years. She is very supportive to him and obviously loves him, so I fully understand that she MUST be the one that as next of kin is the most involved in his care. However I feel as though I have been shut out. I am being given updates regularly, but they contain confusing and conflicting information, and I am only given the info slightly before other people that aren’t related to Dad – old workmates, neighbours, his wife’s relatives, etc.
It is very hurtful. As a medical professional I could be useful in the interpretation, as well as wanting to put my own mind at ease as his daughter, but Dad’s wife has told me she doesn’t want me at the hospital when the doctors do their rounds.She is trying to control EVERYTHING. She has given people a list of things that she wants them to bring to the hospital – you bring grapes, you bring books, that type of thing. She also tells people when they can visit – you can visit on Tuesday, you on Wednesday afternoon, etc..
I have also been directed in this way, which is driving me NUTS.I have only been supportive so far, and have not even tried to interfere in anything. But from what I can see she isn’t even allowing my Dad, who apart from being yellow is still independent and cognitively intact, to make decisions. I usually get on reasonably well with her (in small doses), but I feel like ‘stabbing her in the eye with a fork’ (just a turn of phrase and not a physical action I might add).
A few days ago she rang me to tell me that the doctors had said that they were no able to operate at all, ever on Dad, so he would die soon. I was an absolute mess, I know that Dad isn’t young, and I his time would be up some day. I also know that the prognosis for this disease isn’t usually that good, but this news still shocked and upset me, my sons and other close members of my family that were there when I got the call.
I went to the hospital for a visit, and was there when the doctors arrived – which is where the ban on my being there was revealed. The medical team told Dad while I was there that his bilirubin was still high, but had dropped slightly, they then outlined what level they’d like to get it to before they rebooked his surgery ….. what the….I don’t know if she is deliberately giving me false info to be the centre of attention, if she is somehow not understanding the info given or misinterpretting it, or what the story is, but I cant cope with all the emotional cr…. that I’m feeling at the moment.
I’m usually such a strong person, I don’t get anxious and cope extremely well with stress. I’m trying to appear that way to Dad as I think he’s got enough on his plate without having to worry about me too, but I’m going crazy.I am Dad’s ONLY daughter, my brother has schitzophrenia. Dad has been married three times, and he and I have been through some really tough times together. I really don’t want to take over or interfere at all, but for my own peace of mind I want accurate information about Dad and not be reduced to the status of distant friend or neighbour when it comes to finding out about what is going on.
I don’t know how much longer I can keep that fork in the cutlery drawer.
What should I do.
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