dm, recently widowed, how to we tell her she's really ill?

[WeAllHaveWings]

dad(78) died 4 weeks ago today. we are all heartbroken. dad and mum(76) were inseparable for 54 years of marriage. A few days after the funeral mum was admitted to hospital with breathing problems.

Yesterday we were told she has two life threatening conditions.

Her heart has recently deteriorated. She has very high potassium which they have not been able to lower. The combination of these puts her at high risk of a cardiac failure. They have given her 3 infusions of IV insulin and calcium and the potassium is not lowering. The are considering dialysis to try to clear the potassium from the blood, but as this is quite invasive is very high risk. They are very concerned for her at this point.

She is also suffering from low/malformed blood cells (red, white and platelets). They wont get the full results of a bone marrow biopsy until next week, but tell us the results so far are looking "sinister", and they have prepared us for news that it may be a bone marrow cancer (a late side affect of the high level chemo she had 12 years ago). If it is, she is too old/frail for invasive treatment.

All she knows is she has high potassium and they are struggling to lower it. She doesn't know her heart has deteriorated and how much at risk she is, she doesn't know its probable she has bone cancer.

I am so scared we are losing her as well, she is in HDU, frail, grieving and frightened not knowing what's happening, but the truth is even harder......

I think your mum will know how ill she is, even if she doesn't know the precise objective reasons why

I am sorry, this is horrible. I think you should take your cue from her, trust the medical/nursing team to impart the outcome of test results in the way they see fit in her individual situation and answer her questions truthfully (but only if she asks)

I think you ask her consultant to talk to her. I'm assuming her mental faculties are intact. I wouldn't be happy if my doctors were telling my family but not me. I strongly suspect your mum will have picked up on the way things are going and be more sanguine than you imagine. Are you sure she hasn't spoken to the doctor but is sheltering you from the info.

I'm real sorry to hear this, must be hard for you so soon after your dad

I'm sure she does not know, she's in and out hospital all the time and has been in with high potassium before a couple of times (last time was about 7 months ago) and recovered.

She was just back from her specialist a few weeks ago who told her that her original illness from 12 years ago is still in remission, and her kidneys (she was borderline for dialysis for renal failure and even had a fistula fitted) have recovered to a level that dialysis was no longer likely to be needed. So she thought she was doing well.

She was anaemic, now we know its due to the bone marrow/blood problems but they gave her a couple of blood transfusions a month ago, just before dad died, which had perked her up a bit.

She thinks she is going to get through this like before and talks of when she gets home, how she want to get rid of the kitchen table and get a smaller one so there's more room in there......

Consultant told us he hasn't told her about her heart or the initial bone marrow findings. They want to wait until full results are back before telling her.

It's sad and difficult but you need to let things pan out in the way she finds easiest. If she is still positive and looking to the future, maybe that is how she copes with the situation. I think you are underestimating her.

Also, I don't want to sound mean, but the patient/doctor interface is between them (unless she is not of sound mind) and I think you should put your own distress aside as much as you can just now.

Dad was mum rock, maybe not always in a positive way, they had a very traditional marriage which suited them, but he always did any thinking, made decisions and she let him. During her previous illness over the last 12 years they always saw her consultants together. The consultant would ask how she was and she would just say "fine", dad would have to tell them her symptoms. She would just listen and then ask dad later what it meant as she didn't understand.

I don't think she is taking in what they are currently telling her never mind what she will be told next week.

I know what you mean about "the patient/doctor interface is between them". The consultant asked mum if it was okay to talk to us and she agreed and he took us away and spoke to us. He said he didn't think it was beneficial to tell her just now until full results are back as she is already in his opinion very emotionally frail.

Then you have to take his advice. He will have handled situations like this countless times. All the best x

Weall I am really sorry to hear about your situation, which has very likely changed by now as almost a week has passed.
I don't have anything very useful to add but I have been going through similar, and my mum sounds a bit like yours in the way she deals with things.
I am also really sorry about your dad.
After all I have been through I have come to the conclusion that we are not all geared up to face up to horrible truths. It doesn't make those people weaker in character, and it doesn't mean they are not sound of mind.
They are coping in their own way and honestly my mum now says she wishes she had never asked the doctor. She said she knew she was going to die one day but she didn't want to know when.
Your mum has gone through so much, just take one day at a time, you can only act on what you know and feel now. False hope is not good but there is a way of putting things that gives a bit of truth without making everything sound so desperate.

This is my thread, just so you know you are not alone!

www.mumsnet.com/Talk/off_the_beaten_track/2154294-I-am-in-knots-Mum-has-short-time-to-live-We-know-but-she-doesnt-know-full-truth?

Somuch I am so sorry about your mum. The last week for us has been unbearable, with the heavy weight of loosing dad and the concerns for mums and waiting for the bone marrow biopsy results. Dsis has been sent home twice from work in tears with the stress of waiting for results due today on top of everything else. It is such a difficult time Somuch and my thoughts are with you.

Last Friday we were told by the doctor/consultant on the ward that she was very ill, that initial bone marrow results show malformation in the blood cells, its looking very sinister (he quoted sinister several times), mentioned generic cancer terms, talked about cancer treatments, how chemo was not available to her anymore due to previous treatment, how some patients can live for years with blood transfusions and other die quite suddenly, how she was very frail etc etc. He also talked about the recent deterioration in her heart and risks to her.

Today my sister/brother (there are 5 kids so we cant all go) saw her haematology consultant and her bone marrow tests are completely clear, no cancer!!!!!!!! Everything looking good (relatively speaking), she is severely anemic and spleen still enlarged, but not in any immediate known danger. Her heart results are not back yet so they cant tell if it has "deteriorated". Thankfully we didn't tell her anything before today's appointment.

Now the initial joy (and shock) of the good news is over, haematology consultant has spoken to brother/me on the phone to find out exactly what last weeks doctor on the ward told us. He has apologized profusely, doesn't understand why we were told cancer was even a possibility and says the head (??) consultant will be replying to us in writing exactly what has happened (they offered to phone but didn't want them to phone and confuse mum)

Mums home now, sleeping most of the time (downstairs sleeping now as I type this), now she needs to start getting used to dad not being here and we need to try to get some weight back on her. Could do with a little but need to drive home tonight after I've made sure shes had some dinner.

Hi WeAll, so pleased for you that your situation has improved. I know you will have hard time ahead, getting used to being without your dad, but it's always lovely to hear good news from doctors.

Thank goodness she hadn't been told anything!

Hope your mum starts to feel better soon.