My mother has deteriorated and lost a stone, no motivation

[ToastMarmalade]

I don’t really know what to do here, my mother is aged 80 and lost a stone last year. She has COPD which has also got a lot worse, she can’t make it to the shops even anymore around the corner. She lives on her own and I live 200 miles away. She has moved near to my sister, but my sister has a high powered job that she needs to keep up, and a very busy life so sees her maybe once a month even though she lives 5 minutes away.

I do what I can and visit every fortnight, but have a DS with disabilities myself. She refuses to come and live in my house (I have the room) because basically she likes my sister more (it’s fine, no jealousy from me my mother is a good person and would never admit this, it’s just the way of things). I think personally she hoped to move in with her other daughter, but my sister does not want her to and she doesn’t have the room.

I think my mother is losing the will to go on if I’m honest. I feel for her. She’s a lovely woman. She fights me on everything, quite stubborn, I’ve only just got her back to the doctors to get her COPD managed better (still waiting for further tests) and have recently got her home help. I’ve tried to help her eating and she is under the care of a dietician and takes energy drinks. But she hasnt’ gained any weight.

She recently said that she could ‘just stop eating’ if she wanted to die, but I don’t think that’s how it works. I think she’d have to go into hospital and they would feed her. I’m worried that in a way she’s not that into eating as a psychological thing, almost as a reaction to not getting attention from my sister. I don’t know I’m not blaming her but I think there is an emotional element, as she lost the weight when she hoped to move in with my sister, who was saying she was keen and then changed her mind.

I’m at a loss of how to help, I do all I can but I get the feeling that there is almost some kind of stand off with my mother and my sister, pretending that each is OK but really my mum would be happier and better just moving in with me, but can’t admit that the daughter she wants to be, she can’t be with. Should I just leave them to it and just do what I can? Or should I talk with my sister and be a bit more strong on suggesting that our mother come and live with me?

I think they are two adults who have both made choices.

I think you are being very kind, but ultimately you cannot force someone else to do something they don’t want to.

I wouldn’t want to force anything. What do you think would happen if she eats less or stops eating? She thinks she will be left alone to just die quietly, but I don’t think so, we’d have to get health services in wouldn’t we?

Why? So she could be force fed? I hope not.

Genuinely I don’t know what happens, and it would be good to know so that my mother can have some idea of what might happen.

Ask her to come and stay for a couple of weeks to keep you company?

If she is consuming the energy drinks etc and gaining weight it could be something else like cancer

She does have a cancer which is being controlled at the moment, and is slow moving and unlikely to be the thing that kills her. They got her checked in case it was indicating other cancer but she was fine. She refuses to come to visit me even for a few weeks, I’ve said that I’d make it was nice for her as possible but she said no.

It’s difficult as she has needed a review of her breathing and general health, and also help for her daily living, and I’ve been back and forth like a yo yo. I don’t mind but it’s the denial of it that I find hard, from both my mother and my sister. She got to a crisis point and I had to pick up the pieces.

My mother does not want to go into a care home at all. But that can’t be far away, soon even getting a drink will be hard. My sister won’t talk about it. My mother says she will just starve herself and die if that is the option. I am just finding that no one is making very practical decisions!

If she has capacity then she has a choice whether to eat. Hospital might put her on a drip if necessary.

Im sure this will sound harsh but I’ve worked in elderly care and it is not uncommon for elderly people to stop/ reduce eating, lose weight and then be carried off by an infection.

Loss of appetite is often a sign that an elderly person is in the early stages of dying. You could probably prop her up for a while with extra care but is it what she wants?

Weight loss in common in older people, especially with COPD. You can try speaking to her GP who may prescribe fortified drink but most older people won’t drink them. It maybe time for her to have an assessment by adult services to see if she needs help.

Ultimately she is an adult with capacity so if she decides to stop eating no one will force her to.

She recently said that she could ‘just stop eating’ if she wanted to die, but I don’t think that’s how it works. I think she’d have to go into hospital and they would feed her.

We have just been through this with MIL. If DM has capacity, she can refuse treatments like drips, feeding, drinking, etc and they won’t force her. MIL pulled the cannula out, once she was a bit more with it, after being admitted with sepsis and not eating or drinking for goodness knows how long. She refused to swallow the oral antibiotics. She died.

She sounds depressed. It is common but not spoken about in elderly people. Would she talk to her GP or could you mention your concerns to her GP, she may find a low dose of antidepressants make a difference.

Thanks. She has eaten less for months now, but her weight has remained low but steady. She’s already on fortified drinks. I do think she is depressed. She says she finds being on her own rattling around an empty house very hard. I’ve only just got her to go to the GP to have her general health reviewed, but will see if she is open to considering antidepressants, or at least a chat with her GP.

@Quisquam thank you for the information, that does help. I’m really sorry about your MIL, must be so tough at the end of life, I don’t blame people for feeling that way.

One thing I have suggested is that we work through advanced wishes, and so my mother can feel that whatever treatment or care she wants, or doesn’t want, is respected in advance.

Your sister lives a few minutes away yet only sees her once a month? Unless there is some history of abuse or similar, that is awful. Really unkind.

@NancyJoan, that's really not helpful as OP has no control over it.
@ToastMarmalade, if she doesn't have a Respect form in place, it's a really good idea to discuss it with her - does she want someone to supplement her by drip, or give fluids? If the point comes, does she want a DNR in place, etc.
I get that you might not feel you are at that point yet, but it's worth having it at the back of your mind, for when it is appropriate.
It's a horrible conversation to have to have, but it will help you to better understand what she wants. I ended up having to do this with DM. She had a Respect form in place, but I didn't know for sure what she would want me to do if I found her unresponsive at home, for example.
It sounds like she's starting to find things difficult. Would she consider a cleaner or carers coming in? She may not be at that stage yet, but it may well come.
My DM went on to be diagnosed with emphysema after several years of COPD, and that was at the start of a serious decline in her health. Knowing what she wanted to happen in different circumstances allowed me to advocate for her and respect her wishes (regardless of how I felt, as they were after all her wishes).
I feel for you.

Hi OP. Have you considered contacting Age UK to see if there are any day centres or activities your Mother might like to do? There might be transport organised to a day centre and food on offer. It might cheer her up to socialise a bit more.

My Mother has Alzhiemer's and it's a similar situation with losing weight. Could you get a Carer in at lunchtime to make her a meal or get her out somewhere? I think the threshold for free care is about less than £23.5K in savings. Carers are expensive if your Mother will have to fund them but might make all the difference

Thanks again all. I have (at last) persuaded her to get a home help, only once a week but then it can increase. I am paying half and also sent off for attendance allowance 2 months ago, waiting to hear. She does do the odd social outing but is increasingly just saying it stresses her out too much. She doesn’t like going out even with me, just likes me chatting to her in the house.

She is quite open about her wishes, she doesn’t want a care home, or too many carers in her house. She wants a DNR. It’s a good question I hadn’t actually thought what she would want me to do if she was unresponsive or not eating, I think she’d like me to ignore her! But not sure that’s ethical for me! But she could put what she does/does not want healthcare to do for her. Would be a relief to me to have this on paper.

@Badbudgeter I think I do worry that her quality of life will just be worse than it needs to be, already it’s been hard because she didn’t want a home help. I am not trying to make her life longer, just whatever life she has better. As in, I support her wishes about treatment, care homes etc but then again can’t leave her without clean clothes or bedsheets.

That’s a start OP. Small steps and all that. I’m glad for you. Also with regards her eating and what she actually does eat - is it possible to fortify the foods yourself? Add cream to cereal or porridge and even a splash in soup, butter on potatoes and vegetables.

@ringofrosies yes I did get cream and put it in everything! But when I leave she just lets it go off in the fridge.
@NancyJoan yes I do find it quite difficult to watch, my mother looked after my sister’s kids substantially for years, yet they also rarely pop in to see her. She does take her out sometimes more than once a month, and checks on her more than once a month but it’s for less than 20 minutes. I think my mother resents me for this in a way, she’d rather it was my sister spending more time.