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Mum is wasting away - Carers UK Forum

Mum is wasting away

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I've not posted here in a while, as things have been difficult and I've been struggling to stay on an even keel , mentally.

As some of you know, my mother (87) has been slowly declining for 10 years. She has all sorts of digestive problems; hiatus hernia, dysphagia, anorexia, IBS, plus she has been doubly incontinent for about 2 years. She has a long history of depression, combined with a negative personality at the best of times, so she found it hard to accept the changes that old age brought along. Having an alcoholic, difficult husband with dementia didn't help, but thankfully he is content in a care home now.

I've been supporting her in her own home, with a mixture of carers (one private, plus agency carers) for the last 3 years, but despite our best efforts Mum has declined drastically, neglecting persinal hygiene, moving less with each passing day, hardly eating and rarely going to bed at night.

A few weeks back she starting vomiting dried blood. The doctor said it could be a bleeding ulcer or something else serious, so she was admitted to hospital. They did loads of tests but found nothing obviously wrong (no cancer or ulcers, the hernia is bad but not fixable now). However, she was low in some vital minerals/enzymes, and dehydrated, so they put a drip in.

Mum can't swallow solid food so they are using Fortisip drinks, but she is barely drinking and about 10 days ago she refused to have any more drips, as she said she'd rather die. Well, her weight is now just 5.5 stones, so that is looking very likely. The doctor thinks she probably has 3 months at most, and needs nursing care now, so he is trying to fast track an application for Continuous Healthcare. I've looked at local nursing homes that are on the approved list and they seem fine, but she might well pass away in hospital before she can be transferred to a home.

It's been like watching a car crash for the last few months, a painfully slow car crash. 5 weeks of hospital visits have left me drained. I honestly don't know if I'll be sad when the end comes, or just relieved it's over. I keep thinking about the way Cilla Black died, and thinking how lucky she was to die suddenly from a bang on the head, before she tipped from being old, into being very old. I think she was quite lucky really, though the shock must have been hard for her family.

On the plus side, Mum seems to be sleeping well and is not in any pain, but her weight has actually dropped a few pounds since her admission. I, on the other hand, have been comfort eating and have gained a stone this year. You would never think we were related.
Hi Shewolf,

It's lovely to see you posting, though I'm sorry re the circumstances. It does sound like passing away will be a welcome release for your mother. You cannot anticipate how you will feel when the time comes, however, it will probably be a combination of emotions. It is good that your mother is sleeping better as that allows her an escape period. It sounds like everyone has her best interests at heart and I send you my best wishes at this very difficult time.

Hi SheWolf, stuck for what to say, everything I thought to write sounded like condolences. It seems a very helpless situation for you both, wishing for the worst and simultaneously desperate for it not to happen.
Only a stone through comfort eating? Id have probably already added three in your position not knowing what else to be doing with my anxiety.
Hi Shewolf,
I don't think it will be long. Your Mum has been very much loved and well looked after. Don't feel bad about feeling relief amidst the mourning when the time comes. She has had a long hard struggle and she wants to rest now. Be kind to yourself as you have had a heavy load to carry.
Wishing you well.
Thanks everyone for your kind words. It helps to vent here, knowing I won't be judged.

I read some articles online about anorexia in the elderly, and the condition known simply as "failure to thrive". It seems to be quite common, but there is little information about how low an elderly person's weight can drop, before their body functions fail. Sometimes teenagers can starve themselves down to 4 stones and still recover, but I doubt that an elderly woman would survive that kind of weight loss. If I seem obsessed with trying to predict when the end will come, it's probably because I feel like Mum has had the sword of Damocles hanging over her for months now, so the subject preys on my mind. I find it hard to block the subject from my mind, but know I should try to distract myself, rather than dwell on it. I've been taking a herbal sleep remedy to help with my insomnia, but still can't escape the subject in my dreams, and its the first thing on my mind when I wake up. The irony is that every time I visit Mum she is sound asleep when I arrive, despite complaining that she can't sleep for all the noise on the ward!
It sounds as though it's time to sit with your mum quietly and hold her hand as she goes on the next stage of her journey.
Take care
Dear SheWolf - it's good to see you here again, but sad that it's for this reason.

However, you have had a long, long 'vigil' with your mum (and dad) over the years, and now this vigil is drawing to a close, the only way that such vigils can....

It will be a hard, difficult and strange time. I do think in Victorian days we were better at coping with dying, because there was so much of it about.....these days it seems so strange and alien, and we don't really know how to handle it.

It does sound very much as if your mum is now withdrawing from life, a letting go, a closing down. Your task now is, as Juggler says, to sit with her and 'see her out'. Talk to her, for hearing, so I have been told, is the last sense to fade, and now is the time to tell her things that come from the heart, so that you will neither regret saying what you didn't want to say, or regret not saying what you did want to say.

How is your dad taking it? I'm glad he still seems to be settled in his care home, but for him, too, if he understands what is going on, then it may be something that gives him pause too.

While your mum is in the hospital, there is probably a chaplain of some sort attached to the hospital, and I'm sure that these days they will not necessarily be 'all religious' if that is not what you want, but can still give you time and attention to help you through this - and perhaps even help your mum, too. Even if she wasn't religious in her lifetime, she may find, now as her life closes, that she remembers her youth, and childhood, when religion was more a part of society than it is now, and she too may find some comfort. (On the other hand, she might be like my 91 y.o MIL, a definite atheist, who walks out whenever the care home holds any kind of religious service - she can't bear them!!!! :) )

I understand your feelings about half wanting it to happen, and half dreading it, and wanting to know WHEN it will be. Again, talk to the nurses, as there are signs and portents that indicate the progression towards death - and this may give you warning. However, please please do bear in mind two things - it's not something that can be precisely predicted, even by the medical staff.

Also, as I will not be the only one here to tell you, people 'die in their own time' - it's as if THEY choose 'when to let go'. And very very often that happens when there are no family there. I've heard this over and over again from people - it happened to my mother, and my SIL's mother and father, and so many other people. It's as if they stay and cling to life while their children are nearby, and only let go when they are on their own and feel, maybe 'free' to die??

Thinking of you, and wishing you the best possible, at this strange, sad 'transition' time, when perhaps the most important thing, apart from giving your mum as comfortable a passing as can be, is to remember, quite deliberately, both all the 'good times' you have had in your life with her, and also, quite deliberately, all the difficulties you, and she, have faced, as her health has dwindled and dwindled, so that you can accept her death truly as a release from those difficulties.

Kind regards, Jenny
Thanks Jenny, it's good to hear from you and I like your description of my "vigil" - yes, it has felt like that in some ways.

Latest news is that the fast track application for CHC funding was declined - surprise surprise! :roll: Well, I've pushed back on it, as guidelines seem to indicate that if someone is reaching the end of their life and needs high level care they should qualify for NHS funding. However I will probably cave in quite quickly and just fund it from Mum's savings, as I can't leave her in hospital much longer, knowing how much she hates it. Apparently there are many people in similar positions, who fund the care then make a claim for retrospective funding - not ideal and it probably takes months, but some things are more important than money.

Dad has been told Mum is poorly but keeps forgetting about it. Currently we just try to distract him. If Mum dies first, there will be a moral dilemma as to whether we ought to break the news and allow him to process/grieve, or just keep distracting him. He might not be able to remember the news, so in that case I'd not keep breaking it to him over and over again - cruel and pointless. Also, Mum is adamant she doesn't want to see him, so I don't have the option of taking him to say a final goodbye. That might make him angry - I can imagine he would say he has a right to know if his own wife was dying, but if I reveal that fact before the event, he will insist on trying to see her - it's just a horrible situation as I can't please both of them and the truth would devastate him.

Meanwhile, Mum has been eating a few of her favourite sweets and we have been taking in flasks of hot chocolate, which she likes as a change. Also, she is so fed up with the hospital and the other patients (noisy) that she is resigned to going into a nursing home, as she knows she will have her own room and TV etc. I just want to make that happen quickly now. Last Christmas Dad was in hospital, this Christmas I want to avoid the place and keep both parents away from there!
Sending ((hugs)) to you. My mum was four and a half stone when she died. I wasted a lot of time and energy trying to get her to eat. I agree a nursing home is probably the best place for her now. And yes, hold her hand, talk to her and give her permission to go. Oh, even at the very end, mum liked having hand cream rubbed on. I think she found it comforting.

As for what to tell your dad, a very difficult dilemma. Yes, he my grieve her passing and then forget or indeed it may not register. Have you discussed it with the care home staff? They may have experience of this.

Wishing you strength to get through these difficult times
Anne x
Anne001 wrote:Sending ((hugs)) to you. My mum was four and a half stone when she died. I wasted a lot of time and energy trying to get her to eat.
Oh Anne, that must have been so hard to witness. I fear my mother may well go down to 5 stone or lower, before her body finally packs up. Mum has mild dementia but currently is quite mentally alert for someone pushing 88 yrs of age. I feel Mum may well last a few more weeks and can see her hitting crisis point around Christmas. However, the care home we've chosen has had similar cases where people have rallied round and had a new lease of life, so you can never tell what may happen. It's just very sad and draining watching someone's strength ebb away, but I will do my best to make sure she is comfortable and content during whatever time she has left.

Thanks again to everyone for all your comments and good advice.