How long to start eating?

Hi Eggie

It sounds as though your mother may have developed a food phobia and may need some professional help. She should at least be trying to eat something no matter how small. The fact that she is also refusing Fortisip is worrying. Although she was delighted with the initial weight loss she need to maintain her weight now. She is not getting sufficient nutrition and it will not help with her recovery. They probably will not remove the tube if she is not eating as long as they have all the facts. You need to make them aware of the issues as your mother may not be completely honest. This might prove to be a bit of a carrot to get her eating again. It is a battle in her mind now and not so much a physical issue so this is where some professional help is required.

Lyn

Hi Eggie. I'm glad your mum has had a clear result.

I agree with Lyn. She needs some counselling. Macmillan offer six free sessions if you look HERE. Might she at least try to talk to somebody outside the family?

She is right about you not knowing how it is to have cancer. It's a common theme that runs through us all as we recover and it's a recovery that takes many months if not years. We are never quite the same as we were.There is an excellent essay written by a psychologist involved in cancer care. It really is worth reading both for the family and your mum. It addresses a lot of the feelings we have Dr Peter Harvey Essay

Best wishes and I hope your mum can find a way

I spoke to the Gp who put her on antidepressants. She’s refused to take them and won’t go back to the Gp

she was referred for counselling by her cancer consultant and spoke to a physiatrist- they refused to let me or Dad in and she came out all pleased with herself as she told them she was totally fine, had no issues at all and was confused as to why she was even there. They discharged her which was what she wanted

she screams at my Dad he doesn’t know what it’s like to have cancer - he had oesphegal cancer and had chemo and radio and a 11 hour operation. He is currently being treated for prostate cancer so actually he does know!  My bff had tongue and throat cancer and lost her whole tongue and all her teeth. She and I speak over WhatsApp all the time and I talk to her about Mum. My father in law had throat cancer - he sadly did not survive. But none of them have been like Mum!  She’s literally given up and we have no idea how to help her. Whatever we try she seems to outwit us

i really am worried about her eating, she’s literally skin and bones. Her skin is hanging off her. She has no energy, she can’t sit on the sofa as her bum is literally bone - she lies on it all day. She’s not interested in doing anything at all. 

Oh dear Eggie you must be at your wits end. IM at a loss of what to say. Can someone go in  with her at her ent review and be honest withconsultant   Surely they must be able to see her weight loss ! I know I am still weighed when I go to mine.like Lyn says she seems to have a serious issue with food and dare i say anorexic. I’m so sorry she’s still behaving like this when she’s been given a 2 nd chance.
 Hazel 

Some people just decide to die. It seems she has given up which is her choice. Maybe all you can do now is to back off and not let yourself feel guilty… ever. Don’t let it destroy you. 

Thank you. I do suspect that to be the case

i once sat for two hours to convince her to carry on radiotherapy - she wasn’t even half way through. We got there and she said I’m not going in, I’m stopping treatment. Two hours later she went in

when she refused all food for 4 days Dad took her to a&e and they said there’s nothing we can do if she chooses not to eat. Her cancer team when we spoke to them the next day put her on the overnight pump feed which we managed to get her to take - not sure how!!!!

It’s very hard to deal with but all we can keep doing is smiling and supporting her. Neither Dad or I let on how stressed we are - we just talk when we go shopping as she won’t come so it’s our time alone

Hi Eggie

I am so sorry, this is a really hard time for you and your family. It is so distressing watching someone you love fade away.

My parents were both in their 90’s when they passed on 3 years apart from each other. They both did the same thing over time and gradually gave up eating. I would have some wins and persuade them to drink some Sustagen or eat some custard but in the main they would just refuse. Nothing I or my brother did made any difference. It was so distressing seeing them fade away and not be able to do anything to help. They were exactly the same when they went into a Nursing Home and the staff did not have any luck either. They both had just given up.

Sometimes life just seems too hard and there is nothing that anyone can do to help.

This is a really difficult time for you and your family but know that you have done everything you can to help so try not to feel guilty. Cherish the memories you have of your mother in happier times.

Sending you big hugs.

Lyn

So sorry to hear about your parents and thank you for sharing, it must be difficult

Sophie66 said:

They were exactly the same when they went into a Nursing Home and the staff did not have any luck either. They both had just given up.

Lyn...that is so true. Sometimes a person just knows. My mother had a condition that was likely to kill her pretty quickly but she confounded her doctors and lived 20 years. She was on a myriad of pills to keep her going and I'm sure she just stopped taking them and gave up eating when she had enough. She was 87 and still mourned the loss of my father 40 years previously. She is still in my heart and I remember her as she was...full of life and love

Hi Eggie

I was just wondering if you had been given any advice on pressure relief for the skin for your mother. If so please disregard. I am a retired occupational therapist that used to work in aged care plus the experience I had with my own elderly parents.

When someone loses a lot of weight and do not have good nutrition they are highly susceptible to having the skin break down around their sacral area at the base of their spine and also on their heels.

This is because they sit or lie down a lot and the pressure and shear force i.e. movement of the skin on the material they are sitting on, often results in the skin breaking down and a pressure area forming. This is really painful and once it has happened usually cannot be reversed and can be very distressing for the person.

I would highly recommend regular massaging of the base of spine and heels with something like Sorbolene cream. I would also highly recommend purchasing a pressure relief cushion. The lowest pressure relief is a medical sheepskin that you can sit on and also put under the heels in bed and this can work reasonably well. I noted that your mother is lying most of the time so a large medical sheepskin would cover both the sacral area and her heels and can then be transferred into the bed at night.

Definitely do not get a blow up air ring as these often get over inflated and really hard and make the situation worse. There are other better options. You need advice from an occupational therapist to find out what is available in your area. I live in Australia so can only give advice on what is available here. Next to one of our hospitals there is a medical shop that stocks all these things and they also give advice.

If there is a medical supply shop near where you live that is an option or go online. Don’t necessarily listen to what a nurse recommends in relation to a pressure relief cushion as they often have limited education in this area and most likely will say ‘go and buy an air ring’. Don’t do it.

The range of prices can vary from quite large to affordable but always ask how much pressure relief the cushion will give.

Prevention is definitely better than cure.

Lyn