Moral dilemma.

[DesperateofDevon]

And the other problem is that I can’t talk about this with either family or friends because their instinct is that he should be fed. If he had cancer or something physically debilitating they would accept it but because it’s a hidden disease they just see him fading away and feel that ‘something must be done’, but of course they don’t know what. Yesterday old friends visited and saw this at first hand and I know it upset them. There is nothing I can do though. Thank goodness for TP.

Please don’t let others lack of understanding of your situation distress you. it’s hard to watch but part of the process. I’m afraid film & TV have changed the perception of the reality of the process of dying.

You can only make your loved one comfortable & pain free as possible

sending you lots of love & ((((((((bighugs)))))))
Xxxx

 

[Mydarlingdaughter]

You write "has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment."
He is asking your opinion because in the case of someone who lacks capacity, the correct procedure is to get an opinion from th person closest. He is not asking you to make the desicion, just following protocol.
I think you should go with what Mum would have wanted, were she able to express for herself.

I hoe you wont mind me telling you that I was in exactly the same position myself. I was referred to the iron deficianncy aneimia pre assessment nurse and I told her I didnt want the camera down the swallowing tube test, cant remember what is called. I did have an ultrasound instead, which showed up nothing. However my GP said that as I was a vegerian I should be eating citrus fruit to help me absorb the dietary iron, which I started to do, and eventually my chronic anemia went away!

If yoir Mum did have those tests, was admited to hospital there is a chance she would be a lot more distressed and it could hasten her death anyway. But anyway, you dont have to deccide, just to give your opinion. Or you can choose to say nothing too.

 

[Duggies-girl]

Dad is declining and sleeps almost all day. He is looking very small lately but hasn't lost any significant weight. Is it the dementia or is it the cancer, I don't know, I really haven't a clue. He has no pains but he still enjoys the little bit of food that he eats and is quite happy so I suppose he is stable with a slow decline.

No more trips to hospital now unless something awful happens and we will try to avoid that if possible.

I have not made any decisions for dad, we have always taken the advice given by his medical team and it has always turned out for the best. Other family members have disagreed at times but their suggestions were not helpful so we ignored them.

 

[Toony Oony]

It's an awful situation, that many of us have to face. I have no siblings, so the decision is mine alone.

My Mum had 2 falls out of bed in the CH recently. Both caused severe facial and cranial bruising. As a result Mum went from eating hardly anything, to nothing and she was seen by the GP. The GP was suggesting Mum went to hospital for a CT scan, despite it being seen as unsettling and an upheaval for her, 'as that is what we normally do with head injuries, to ascertain if there is a bleed'. I asked if a bleed was found, what treatment would be given. The reply was; 'a burr hole would be drilled into the skull to relieve pressure .......... but your Mum is far too frail for that'.
'Then why are you even suggesting a scan?'
'Because I have to'.
I found this both ridiculous and frustrating, but it actually led into a sensible and valued conversation. The GP agreed that nothing was going to improve Mum's quality of life at this point - and I stated that I wanted Mum's final weeks/months/?? to be pain free, stress free and happy, with familiar faces around her.
GP was grateful that I was matter of fact and straightforward and a plan has now been put in place. No future hospitalisation will take place, meds are pre-prescribed and palliative care will be given.

I treasure every moment with Mum, and if there was something that could be done to make her situation demonstrably better, I would move heaven and earth to access it for her. But the sad truth is that she is very, very slowly slipping away. There is no recovery possible with this disease and her quality of life decreases by the day. She always hated hospitals and fuss and I just have to be brave and hope that this is what she would choose for herself, or choose for me if our situations were reversed.

 

[Champers]

You write "has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment."
He is asking your opinion because in the case of someone who lacks capacity, the correct procedure is to get an opinion from th person closest. He is not asking you to make the desicion, just following protocol.
I think you should go with what Mum would have wanted, were she able to express for herself.

I hoe you wont mind me telling you that I was in exactly the same position myself. I was referred to the iron deficianncy aneimia pre assessment nurse and I told her I didnt want the camera down the swallowing tube test, cant remember what is called. I did have an ultrasound instead, which showed up nothing. However my GP said that as I was a vegerian I should be eating citrus fruit to help me absorb the dietary iron, which I started to do, and eventually my chronic anemia went away!

If yoir Mum did have those tests, was admited to hospital there is a chance she would be a lot more distressed and it could hasten her death anyway. But anyway, you dont have to deccide, just to give your opinion. Or you can choose to say nothing too.

Thank you. That certainly helps put my mind at ease. I definitely felt the doctor was trying to tell me the sensible and kindest choice, without putting it in blunt words. I’ve received a further call today informing me that Mother will be taken to a sort of outpatients clinic for elderly people next week in order that they can do some “low key investigation” I wasn’t aware that this sort of facility existed. Apparently, it’s very relaxed and as non-medical as they can make it.

Mother has lost a huge amount of weight over the last two years. She was always very well rounded but is now painfully thin, although I assumed this was because of the fact that when she was living independently, she was either forgetting or not bothering to eat. She has been in the CH for 2 1/2 months now and has a very good appetite and enjoys the food but continues to lose weight.

 

[Lawson58]

You write "has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment."
He is asking your opinion because in the case of someone who lacks capacity, the correct procedure is to get an opinion from th person closest. He is not asking you to make the desicion, just following protocol.
I think you should go with what Mum would have wanted, were she able to express for herself.

I hoe you wont mind me telling you that I was in exactly the same position myself. I was referred to the iron deficianncy aneimia pre assessment nurse and I told her I didnt want the camera down the swallowing tube test, cant remember what is called. I did have an ultrasound instead, which showed up nothing. However my GP said that as I was a vegerian I should be eating citrus fruit to help me absorb the dietary iron, which I started to do, and eventually my chronic anemia went away!

If yoir Mum did have those tests, was admited to hospital there is a chance she would be a lot more distressed and it could hasten her death anyway. But anyway, you dont have to deccide, just to give your opinion. Or you can choose to say nothing too.

You should be able to purchase iron tablets that have vitamin C added. My husband is vegetarian so has taken these for a long time.

 

[Lawson58]

Oh you are right because I had the same issue with my mother dying of lung cancer and we didn’t have the same sense of responsibility at all. The difference is that she had her mental faculties right to the end and could make her own decisions. He cannot and doesn’t know what he is doing and I think that’s the difference. I must stop obsessing about it but I do get desperate as he sits drooping over tiny amounts of food, and wouldn’t eat if I didn’t tell him to take every mouthful. That’s the moral dilemma, should I just stop?

I think that even though he is unable to make decisions for himself, perhaps his body is telling you what you need to know. The letting go is still the same, still as tough and still as sad. You can only do your best and accept that this a fight that you cannot do for him.

When my husband was 74 years old, he had a cardiac arrest at home and I gave him CPR and saved his life. Recently a very close friend asked me if I would do the same now considering my husband is now 80 years old, and has Alzheimer's and of course heart failure. My head tells me that I shouldn't but how could I just sit there and hold his hand and wait for him to die? I know if I gave him CPR I would break his ribs because I did last time and I accept that his chances of surviving would be low.

I hope I never have to find out what my decision would be but believe me, I do know the place that you're in.

 

[Champers]

Mother had her appointment this afternoon at the clinic, but rather cowardly, I decided to let the CH take her and deal with it as I felt that my presence would only increase tension. I know if I had attended, she would have turned her anger and venom on me. She, undoubtedly, would have kicked off as I am usually the target of her rages. I wasn’t asked to go with her by the doctor or CH manger, so I assume it wasn’t necessary, although in the past I have always accompanied her for medical issues - for better or for worse! - and usually ended up apologising profusely for her rudeness.

 

[Sarasa]

Hope you get the results soon @Champers and that your mum didn't find the whole visit to the clinic too stressful.

 

[Champers]

Thank you so much, Sarasa.
Just had a call from the CH. Blood test results today show multiple infections and severe kidney issues. The hospital have kept Mother in and placed her in the acute medical unit in order that they can isolate the specific cause of her anemia and what course of treatment will be appropriate. I’ll have to be guided by her doctor and hope that she isn’t too unsettled by being admitted.

 

[Sarasa]

Sorry to hear that @Champers. I hope she has a good night. that they get to the bottom of the problem quickly and that you can visit without stress.

 

[Champers]

Just received another call to tell me Mother has been diagnosed with multiple myeloma. The doctor has explained very kindly what the treatment options are and has asked whether, as I have POA, I would want her to have a blood transfusion and IV fluids or for her to just be made comfortable. I kind of feel that they’ve already made the decision and just wanted me to endorse it.

 

[Duggies-girl]

Just received another call to tell me Mother has been diagnosed with multiple myeloma. The doctor has explained very kindly what the treatment options are and has asked whether, as I have POA, I would want her to have a blood transfusion and IV fluids or for her to just be made comfortable. I kind of feel that they’ve already made the decision and just wanted me to endorse it.

I think you have done the right thing @Champers Dad has cancer and is on palliative care so no treatment as such, mostly because of his frailty, age and the effect chemo would have on his dementia. Keeping him comfortable is the most important thing and he has had blood transfusions, iron infusions and antibiotics and he can have anything else that improves his well being.

 

[Sarasa]

Oh dear @Champers. I guess you needed to be guided by the doctors, but it sounds like they are aware that invasive treatment my not be the best option. I hope she is comfortable, and that they can sort out a plan that means she can go back to the home. She may not be that happy there, but hospitals are not good places for those with dementia.

 

[Banjomansmate]

I am guessing you have/will agree to her just being kept comfortable and hopefully returned to the Care Home that she knows, even if she isn’t too happy there. It will be a difficult time for you but I am sure it’s the kindest thing you can do for her.
Carol.

 

[Mydarlingdaughter]

Its difficult isn't it Champers. You did the right thing for sure letting the CH take charge of getting her to the clinic. You feel cowardly but in most peoples eyes you are a hero. You have been a carer and although is no longer hands on, you are still caring. The people looking after your Mum are used to the sorts of behaviour you describe.
My Mum also was triggered by my presence and I had to step back as she became more angry when I was around.
The medical staff will involve you as much as possible in decisions, but if my own experience is anything to go by, they will make them and then inform you. I was asked a few years ago if I had any objections to the DNR notice being put in Mums file, but I would have had to actively oppose it against their advice.

 

[Champers]

Once again, thank you for all your replies. You all give me strength to persevere!

I had a useful and in depth talk with the doctor today, partly because there was a complete mess up last night. I got a phone call from the hospital at 11pm telling me, because they weren’t going to treat Mother, they were calling a taxi and sending her back to the CH. I was informed, that as there were no beds available, they had no choice. I told them there was no way they were putting a confused woman in a cab, on her own and sending her anywhere. I drove to the hospital at midnight to collect her, expecting her to really kick off but when I took her back to the CH, Mother was an angel! The night staff made a big fuss of her, gave her a mug of tea and a cake and told her her bed was warm and ready. suddenly, it’s almost as though she is starting to accept that this is now her home and where she is safe.

The doctor was incredibly apologetic and said Mother shouldn’t have been sent back to the hospital last night in the first place and her next appointment will be with a haematologist who can prescribe medication to manage the cancer. I suddenly had an awful feeling that maybe the myeloma was causing her dementia but I was assured that this wouldn’t be the case, although it probably wouldn’t help it either. If she was fitter and in a better place, I was told that stem cell therapy might be considered but that form of treatment involves drilling into obtain bone marrow etc which would be horrific for a PWD.

My husband, son and daughter support the decision totally too which is a huge relief.

 

[DesperateofDevon]

Mother had her appointment this afternoon at the clinic, but rather cowardly, I decided to let the CH take her and deal with it as I felt that my presence would only increase tension. I know if I had attended, she would have turned her anger and venom on me. She, undoubtedly, would have kicked off as I am usually the target of her rages. I wasn’t asked to go with her by the doctor or CH manger, so I assume it wasn’t necessary, although in the past I have always accompanied her for medical issues - for better or for worse! - and usually ended up apologising profusely for her rudeness.

I think you have made the right decision & the carehome surely see appointments as part of the care plan.
I totally understand how it feels to be continually the main target for these venomous outbursts. I no longer visit aged mother on my own as I cannot cope anymore with them; when confronted about them of course she denies all knowledge so by having company we are both protected from these situations.

Take care & be kind to yourself
X

 

[Champers]

After several different blood tests, I’ve received a call from the haematologist. She is 99% sure that Mother does have multiple myeloma - all the classic symptoms, markers etc. She thinks that we might be talking about days rather than weeks as the kidneys are virtually shutting down. She told me that she is blissfully unaware of any issues but the specialist asked if I was happy with just referring Mother to the palliative care team and that no further intervention be made.

Still feeling a bit like I’m almost signing her death warrant though. I guess I have to remember that Alzheimer’s is terminal anyway and that even if I could save her from this, the underlying disease is still there. Despite my poor relationship with Mother, I still feel bad making this choice.

 

[Duggies-girl]

I think the doctor is guiding you @Champers When I took POA for dad we agreed that we would always listen to the doctors (as they know best ,mostly) and up to now it has worked. It takes the pressure off me and I have been glad of this.

You can't save your mum, you can only do what you have been and that is supporting her. Palliative care is there to keep your mum comfortable and no more than that.

Sorry that you have reached this difficult stage but I would make the same choice.