advice please, what to do about hospital visiting

Discussion in 'ARCHIVE FORUM: Support discussions' started by peppa, Dec 13, 2007.

  1. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    My mum is in hospital again, for the fourth, or fifth time this year. This time went from care home (about which she had protested, because she claimed she was the only one 'awake')where she'd been only a couple of weeks. She had been getting weaker, less able to use her frame and needing help with feeding. A month ago she was trying (dangerously) to walk alone with a stick and holding rational conversations, eating normally, laughing and being extremely lucid when we took her out in wheelchair to the park.

    I'm terribly worried. She is only 70 but has a catalogue of illnesses, including type 2 diabetes, vascular dementia, triple bypass 2 years ago, poor balance, etc. Now she went in with a UTI which sent her diabetes wild (up to 27, then down to 3.2). Apparently there a signs of sepsis. She's been in since Monday and now they suspect she may have c. diff. She is not eating or drinking, unable to swallow medication. On a drip for diabetes and another to hydrate. Antibiotics being given intravenously.

    Yesterday I saw her and she spoke to me (made no sense, just words strung together). Tears rolled down her cheeks. I couldn't stop crying, had to go and try to compose myself and return. I gave her a few spoonfuls of yoghourt (she ate only yoghourt and soup previous day). She smiled when I kissed her goodbye, but then looked so confused that I was going.

    Today she unable to stay awake for anyone. Still no food (she is very very thin anyway) and still has fever. I saw the doctor and was told they were 'worried'. Not sure why not improving despite antibiotics. They suggested it could be a combination of illness and depression (she taken off medication for this earlier in year due to sodium problem). She is also very stiff (don't know what the significance of this is) and face and hands swollen. She didn't appear to register my presence. She made no reaction when I kissed her goodbye or stroked her hair.

    I'm on my own at moment (husband away till sunday) with two young children. Doing my best to visit between nursery (I don't drive, hospital over an hour away via 3 buses) but just don't know what i should be doing. Have managed to get several people to offer help so I can go every day for an hour till my husband gets back, but just don't know what to think. Could she be dying? The doctors have not said this, but by saying they are worried I get the feeling they are not optimistic, and the c. diff business I know is dangerous.

    Don't really know why I am writing all this. I guess it's because I've been reading this forum for a while and found great comfort in reading other people's posts. I'm struggling to get a grip. I had thought my mum had 'mild' dementia, but she has become so frail it's been hard to assess her real 'condition'.

    Does anyone have any advice about what i should be doing? Should I drop everything and be at her bedside? Will she know I am there? Is it worse to be there if I am crying (i'm sorry, but i simply can't control this at the moment)?

    Apologies for length of post. Feeling low.

    Peppa
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Peppa

    You sound so upset, and I can understand your distress. It's frightening to see someone as ill as your mum is, and for your husband to be away makes it even harder.

    If the doctors say they are worried, that's usually an indication that your mum is not responding to treatment, and it's possible she may not recover. But she may! If the antibiotics start to kick in, she may be able to fight off the infections.

    I would have a word with the consultant, you may have to make an appointment for this.

    Ask what he thinks, and what the outcome is likely to be.

    Don't worry about crying, it's OK, and won't upset your mum. Just hold her hand, and tell her you love her. Keep her warm and comfortable and secure.

    I can't tell you how much time you should be spending there, the doctor can tell you more. You have to decide if you want to be with her if she should die, and tell the doctor and the nurses.

    It's so difficult or you, having such an awful journey to get to the hospital. It'll all be so much easier when your husband comes home.

    Sorry,I'm not much help, but I will be thinking of you.

    Love,
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Sorry to read what happening with your mother

    I 2nd that as it sounds like such good advice.
     
  4. Mary11

    Mary11 Registered User

    Nov 25, 2007
    18
    Hello Peppa,

    So sorry to hear of your terrible situation. Don't dispair your husband will be home shortly and you will have someone close. Have you spoken to the Dr.s about probotics?? In particular S. Boulardii, it's a yeast (the only to be classed a probotic) therefore can't be killed off by the antibiotics used to treat c-diff. Lots of hospitals use this in the treatment of c-diff (alongside the Metro or Vanco) it helps to re-establish the friendly bacteria in the gut. Have you tried the c-diff website - www.cdiff-support.co.uk

    My thoughts are with you.
    Mary
     
  5. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Peppa You have my greatest sympathy. You must be worried out of your head because you cannot be in two places at once. Nobody can.
    All you can do is your best. Look after your immediate family, those are your overiding responsibility.

    Your Mother seems to be getting the best care and treatment that is available and I dont't think that worrying about her at this stage is going to help you or her.

    My Mother (86) has just been taken into a Nursing Home with very similar symptoms to your Mother. Wildly fluctuating diabetes, urinary infections, loss of speech and the like.

    Unlike you, I do have a car but i am unable to visit her as I also have my wife with AD whos gets very upset in hospitals and homes or when her daily routine is altered.

    I can't leave her at home and I can't take her with me. All I can do is wait while someone offers to sit with her so that I can see Mother.

    I don't worry about my Mother, she is beyond anything that I can do for her and she is receiving more care and attention thanI could possibly give her.

    I believe help is on the horizon in the form of your husband and things may work out a little better for you.

    Hope this helps in some small way.
     
  6. 117katie

    117katie Guest

    Dear Peppa

    All I can say is that where you are today is where I have been since Saturday last, when my Aunt was rushed to A&E and then into Critical Care Ward and then into Isolation Ward. She has only been in her residential care home for 10 days, but sadly she is now seriously unwell.

    so you are not alone, dear peppa, one at least of us is there with you, and sharing your desperation.

    i can give good news, however:

    after three days she opened her eyes and asked "where am I" which we answered honestly, in hospital with pneumonia, which we called a chest infection. We now know that she may also have c-diff, or maybe not, depending on the result of the stool-test. But the most important fact is that she opened her eyes and looked around and asked "what's that up there?" as she pointed to the ceiling and the only light she could see. Question: why are ceilings so bald and bare in Critical Care, when the only thing our people can look at is the ceiling??????

    Then we achieved a few of her old known facial expressions, but it took a lot of hard work, on my part and the nurses were watching and almost asking "what are you talking about, Visitor"??? I knew, and my Aunt knew, but they didn't have a clue.

    Today: she is brighter, and cleaner, and hair combed and arranged, and looking bright.

    What more can anyone say, except that each and every one of us does not have a single clue as to what we have done today, yesterday, or likely to need to do tomorrow.

    So my bestest ever advice is: look on the bright side of life, because they will always surprise us.

    I have recently upset a few people on TP, but that may be because I have not shown all my own personal problems up front, so many people may have made their own judgements of me, without beginning to ask about my 83-year old relative. So if you wish to press the delete key, then so be it.

    But, Dear Peppa, I know where you are now, because I too am exactly where you are.

    Katie
     
  7. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    Thank you all for being so supportive! I am still in tears, but I feel much comforted by wise words, and knowing that i'm not alone in this. I have spoken to some other people about what is going on, but I get the feeling that unless you have been involved in dementia or seen a very close relative struggling to survive you can't really empathise. One woman I spoke to about my mum to yesterday in the school playground made some fleeting remark 'oh, how awful' and then went on to talk about something completely different.

    Hazel and Margarita: thank you for saying it's ok to cry! otherwise i simply wouldn't be able to be there. i cry when her eyes are closed, and i cry when they are open and she looks as if she wants me to do or say something, or to tell me this is it. i don't know, i'm projecting, of course, but when she looks at me and doesn't speak it breaks my heart.

    Mary: Thanks for the site and the advice. I will definitely look into this tonight.

    Grommit: I'm so sorry to hear your mother is in a similar situation. It is humbling also to realise I don't have it so bad...it much be terribly complicated when your wife has AD and this makes visiting difficult. I thought young children was bad, but actually they are pretty oblivious to what is going on (or seem to be!) and can quite happily play with someone else's children while I go out. I'm not really complaining about not having a car (this is a minor issue) - i do not drive and taking buses is the most normal thing in the world for me. I was only trying to show that it takes a long time, but relatively speaking it's not that far. We are in the same city. It's ok.

    Katie: I'm so sorry to hear you are in this situation too. It seems almost impossible that this could be happening to someone else at the same time (well, clearly it's not), but your post has given me hope. Yes, things might be better tomorrow. Things were not so bad yesterday, so this could be a blip, and yes, the antibiotics might be about to do their job. We too waiting for the stool-test result (don't know how long this takes) but i hear that as a precautionary measure all her visitors must now wear gloves and aprons. To be honest I don't know if her body can take this latest blow. She's had so much of hospital this year and been through physical and mental hell. She's also told me so many times this year that she thinks she is dying (this was normally low sodium-induced) and now it seems her body really is in chaos. I will try, however, to be positive. We have seen her slumped over in a chair unable to speak in hospital earlier in the year, and within a couple of weeks she was up and about with a stick and merrily having a birthday meal in the pub.

    Thank you all, peppa
     
  8. 117katie

    117katie Guest

    Stick With It, Peppa!!!

    You are asking exactly the same questions that I am asking. I know many people will wonder why my Aunt is my focal point, but she has nobody else to support her, no husband, no sons or daughters, just a niece who cares enormously. So I am there and here for her.

    Believe me, she has picked up so much since Saturday, when she was unconscious and the medics did not expect her to survive the day. She is made of tough stuff, as is yours. She pulls her tubes out each and every day; she shifts and shuffles in her bed each and every day; she achieves as much as she can each and every day; she makes a step forward each and every day.

    She is working so very hard at the moment that I am truly humbled by her stickability!!!!

    So tht is why I can only stay STICK WITH IT, Peppa!

    No apologies this time for the capital letters, because she is worth a MILLION CAPITAL LETTERS!!!!

    Katie without the smile
     
  9. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I wonder why hospitals make it so difficult for families to arrange to visit?

    When my Mum broke her hip, visiting was only allowed between 2pm and 4pm, then between 6pm and 8pm.
    As I was working in the afternoons and evenings, this was very inconvenient and I was exhausted by the time Mum had been there for nearly four weeks.
    Open visiting, between 10am an 8pm, would have made life so much easier as I could have gone in the morning when I was free and stayed to help Mum eat. She lost so much weight because there was nobody to help at meal times.

    The rigidly set visiting times are also very distressing for patients who might not get many visitors, as some people have crowds of family around the bed. Mum used to get very upset that she didn't have many visitors because I'm an only child, and I think she had forgotten this and seemed to be expecting her non-existent son to come and visit her.

    In hospitals with open visiting, there are only a few visitors at a time and most patients have not got a visitor, so it isn't so bad for those with small families. It would also be easier for hospital staff to talk to relatives, as there would not be a big rush of people at visiting time. I never had the opportunity to talk to a doctor about Mum's condition and in the end I used to ring up in the mornings and talk to the ward sister on the telephone.

    If travelling to hospital is a problem, there may be voluntary organisations who arrange transport to hospital, so it might be worth asking the hospital for advice and information.

    Kayla
     
  10. sheila d

    sheila d Registered User

    Dec 8, 2007
    25
    liverpool
    Sorry to hear about your situation and I know what you mean about the crying. My mother was taken in to hospital suddenly on Sunday and almost without warning we are facing a diagnosis of dementia ( she is due to go for CT scan ).

    Just a couple of weeks ago we were chatting about this that and everything and now she seems locked in her own world of obsessive behaviour. Dad keeps ringing me in tears and I am trying so hard to be strong for both of them, but yesterday after Dad left the hospital I broke down and cried and had to leave the ward.

    I guess we just have to put it behind us and get through the next day, after all it is a natural human reaction to cry, so why do we all try so hard to hide it ?
     
  11. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    Update

    Well, thankfully doctors have got result for c. difficile and it's negative. This is good news, and she seems to be responding to antibiotics, also good.

    However, sodium super low and no possibility of eating or drinking as so drowsy they fear she could aspirate it. Doctors say she is very unwell and still concerned. Plan to do brain scan on Monday. Not sure what they expect to find.

    Mum looking no better. No signs of recognition. lips strangely stretched. But I felt stronger and much more able to deal with the situation. Seeing my sister at the hospital crying somehow gave me the strength not to. May also be because have started to read a book about healing, which is not something I normally do, but it has calmed me.

    Thanks Katie for reminding me to be positive and to hang on in there. I am doing just that! And I have no objections to your capital letters! Hope your aunt is still making good progress.

    Thanks Kayla for your advice too. I have noticed that I am visiting outside visiting hours, but I don't feel I am getting in the way and quite frankly this is the only time I can go. I haven't been asked to leave so far.

    Sheila: I'm so sorry for you. It sounds very sudden. Our experience has been much more gradual, over a two year period. I agree, crying is a natural reaction and we should do it more often! I wasn't embarrassed to be seen to cry by others, I was more concerned that it might worry my mum. As I say, today I didn't cry, but who knows what will happen tomorrow.

    peppa xx
     
  12. 117katie

    117katie Guest

    Dear Peppa

    I cannot begin to tell you the similarities between your own situation and mine. So I'll name a few and add a few: 2 years down the line for us too; angina; diabetes 2 with bloodsugars all over the place last week; vascular dementia; totally dehydrated on arrival at hospital - thank you so much, care home!! - osteoporosis; hypertension; only been in care home for 10 days; now confirmed C-diff. Stool test took 2 days for result to get back. Not able to swallow; still on drips and tubes galore, but oxygen mask now removed as she's managing to breathe independently. The one thing I don't understand is why she has now been moved to a gastro-medical ward, even thought the C-diff has been confirmed.

    We also had to wear apron when visiting, and wash hands in soap-water and use the alcohel gel. But strangely, no gloves required, or mask. But then, none of the nurses or docs were wearing masks either.

    Like you, we are told she is still very unwell, which I guess means that she may not pull through. Speech not returned yet, but we are hopeful.

    But having said all that, I too am crying less than I was a week ago; I am also finding that I am becoming calmer. Maybe we are just realising that we have to keep ourselves going, for the sake of our husbands and children.

    What's your book called? It sounds as though I might benefit from it too!! Especially as we have to attend the funeral on Monday of one of our oldest friends. Life's a real .... sometimes, isn't it??

    Thinking of you, with so much empathy you would not believe it!

    Katie
     
  13. peppa

    peppa Registered User

    Jun 5, 2007
    26
    london
    Not so good...

    Well, sadly things have got worse. They did the CT scan today and rang my sister to say mum has had a major stroke, which will affect both memory and spatial awareness. They say we have to wait and see over the next few days if there are any signs of improvement, but if she was already struggling physically and now this has happened I can't imagine that a 'recovery' offers much hope.

    We are devastated by this news. She can still hear, and feel pain, but other than that they can't say. We can go 'anytime', I think a signal that it's time to prepare for the worst. Having said this, part of me thinks that the 'worst' might indeed be surviving and living on in a nightmare, unable to move or communicate. I am preparing for whatever it may be, and plan to take one day at a time. Have arranged for other people to take care of the children for most of tomorrow. They've witnessed me crying this evening, and there's only so much a two and a four-year-old can understand.

    Katie: I feel for you too. I know you are furious about the doctor. I can well understand that. We've been there many times this year. It often does feel like an uphill battle and that your loved one simply isn't understood (i actually used to feel guilty talking to CH/doctors about suspecting mum was unwell...we came to feel we were neurotic). Hang on in there. I don't understand why your aunt is not in isolation, or maybe she is and I have missed that. Do look at that c-diff website recommended by Mary above, it has plenty to offer. The book I'm reading is "Healing into Life and Death" by Stephen Levine. I've only just started it and it seems to be about meditation and different ways of reacting/coping with illness. My husband bought it last year when his father was dying of cancer and found it useful. It may or may not be your kind of thing - check it out on the internet. Keep in touch,

    Peppa xx
     
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear Peppa

    I really don't know what to say - the news that you have been given is definitely not good. People can make remarkable recoveries from strokes, but as you are aware, some do not. I would be inclined to agree with you that being told you can visit "anytime" means that her prognosis is not so good, but remember a prognosis is just that - a guestimate if you will.

    Take care
     
  15. 117katie

    117katie Guest

    Dear Peppa and Husband and Family

    .... my heart is with all of you .....

    Thanks, Peppa, shall go and buy that book.

    Like you, we have asked all the relevant questions that we can think of. And every hour that I wake up during the night I think of yet another question that I probably should have asked. But, if I manage to find the pen and paper that is about an arm's length away from me at 3, 4, 5, or 6 am, then I may just be able to write that question down and refer to it next morning. But don't bank on it!

    We will be here tomorrow and the day after, and hope that you will be too. Strong, energised, and full of awakefulness for the challenge ahead.

    We will be waiting to hear more from you. And we will keep you up-to-date on our 83 YEAR OLD'S PROGRESS. This evening she was alert and eyes-open, so .... tomorrow we hope she will be further advanced in her conquering of that which came her way.

    SPARKLING EYES FOR TOMORROW!!

    Katie
     
  16. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Thank you to hospital and care/nursing home staff.

    I feel very sorry for anyone who has a sick relative in hospital, especially at this time of year, as there is so little that can actually be done to help the ill person. I felt powerless and as though Mum was at the mercy of the doctors and nurses.

    Although there were things that went wrong and the service could have been improved to help Mum more, ultimately, I think that the individual doctors and nurses did their best for my mother. She was very ill before she had her fall and broke her hip, so was not really in a fit state to begin with, for such a big operation.

    I could also find things which could have been better at my Mum's Nursing Home, but she was treated with kindness and respect and she trusted the staff. She said how kind everyone was and how good the food was.

    She died suddenly and unexpectedly in May and I couldn't help thinking that she looked too well to have died. Her hair was always styled nicely and freshly washed and her clothes were well laundered and ironed. In eighteen months, I never saw her dressed in messy things.

    I'd like to say a big thank you to any hospital or nursing home staff on TP, who do such a wonderful job looking after the frailest and most vulnerable people in society.

    All we can do is to visit our loved ones as often as possible and do what we are able to do.
    Unfortunately, there comes a time when a peaceful death is a release from suffering and illness. I miss my Mum, but she looked so peaceful at the end and I know that she will live on in my memories of her.

    Kayla
     

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