Don't know what to do.

Discussion in 'End of life care' started by Dino, Jun 15, 2019.

  1. Dino

    Dino Registered User

    Aug 7, 2011
    76
    I've posted before about my lovely mum, I live in the US and Mum's in England.

    I was in the UK from last October to the end of March and sat with mum everyday. When I first arrived the Dr.told me mum was at end of life and had meds in place so she would be as comfortable as possible, well mum pulled through and started eating a little...she is on thickened liquids.

    Mum has not recognized me for years...I know she did a few times though when I sat with her..she's bedridden, incontinent, has to be fed etc.

    Yesterday I heard from the head nurse mum is quite unwell, her oxygen is low and is on antibiotics as the Dr thinks she has another chest infection.

    She is barely eating and they can only get her to drink a few sips of liquid.

    They have her on meds to keep her comfortable and help with pain.

    I asked the nurse if I should come over right now and she said it's so hard to tell, I know they can't say how long mum has.

    The Dr is supposed to be calling me but not heard from her and when I call the Dr's office she's not been there.

    I took months off from my job here and my boss was understanding but I can't take that amount of time off again.

    I don't know what to do, if I was told yes, mum is not going to pull through this time, I'd be on the next plane.

    I feel terrible, I'm so far away.
    The nurse told me mum is being checked on every 30 minutes and they try to get her to drink.

    I can't bear to think of mum all alone when she passes away.

    I just don't know what to do.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,896
    Kent
    She won`t be alone @Dino, there will be someone with her.

    When my mother passed away one of the carers was with her.

    When my husband passed away, even though we had been with him night and day, we had just nipped home for a change of clothes and a bath and he passed away then. One of the carers was able to tell us about his last minutes.

    With the best will in the world your mother could recover from her infection or may not and it will be impossible for you to gauge.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    I agree with Sylvia.

    I was told 3 times that mum would not survive - and then she bounced back. Eventually, of course, she didnt. When I was told that she was in her final hours I stayed with her all the time, sleeping on the floor. After 3 days I had to get back to check on my OH and within 10 mins of me leaving, my mum had died.

    I was told afterwards, by a very experienced carer, that she had seen this many, many times - that often they dont want to die in front of someone, so they wait until they are alone. You might travel all that way, only for her to pass away on her own when you nip to the loo.
     
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,668
    Nottinghamshire
    I wasn't with my dad when he passed away. I live only a few minutes away from his carehome but he'd still left before I got there. He had carers with him and he'd been drinking coffee shortly before his unexpected departure.
    I was with him in spirit and that, I believe, is the most important thing.
     
  5. Dino

    Dino Registered User

    Aug 7, 2011
    76
    #5 Dino, Jun 15, 2019
    Last edited: Jun 15, 2019
    Thank you all so much.
    It is 2am here in Colorado and I am in tears for my mum, there is nobody to visit her except me or my sister who is very ill and it's torture as I keep thinking she is so alone.

    My sister has careworkers who take her to see mum sometimes, my sister has severe brain injuries.

    To see mum in the condition she is....I know many here will understand I want mum to be in peace, for this cruelty to stop.

    I have heard when you leave the room, someone will only then pass away.

    I do have some peace knowing that a few times when I was with mum she did know who I was and knew I was there, even if it was just for a few seconds and then she was gone again.

    I think it's because I'm so far away and feel guilty even though I know mum would never want me to feel this way, we were very close and could talk about anything.

    Thank you for listening xx
     
  6. Ohso

    Ohso Registered User

    Jan 4, 2018
    139
    My thoughts are, if you have made peace in your heart that you may not see her alive again, then stay home, as I presume you would fly home for the funeral, however if you know in your heart you arent ready not to see her again before this, then go, go and know this may be the last time, resolve your feelings while there, say your good byes, believeing it is to be the last time and enjoy the time you have with her. Say all the things you want to say x
    If she pulls through and you are back to where you are now, you will be in a better frame of mind and depending on how much time has lapsed make a fresh decision.
    It is a horrible decision to make but at least you can make it, there are so many others who lose loved ones in the blink of an eye and never have that chance to reconsile the oncoming loss, where as often with someone with dementia we have years to come to terms with it. xxxx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,896
    Kent
    Of course you are. You are in a terrible situation.

    Your mum is in safe hands with people who know her. You know you would be with her if the distance wasn`t so great. There is no way you could make that journey `just in case`.

    Try some deep breathing with thoughts of your mum. It might help.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    (((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))) @Dino

    I think @Ohso has given good advice.
     
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,944
    Female
    East Midlands
    @Dino it’s a horrible situation to be in with you living so far away from your mum.
    My mum recognised me until the very end but I wasn’t with her when she passed away in hospital. She was still on the ward as I felt she was better around people but she passed away in the early hours. We spent a lot of time in the hospital with her especially when she went onto the end of life syringe driver meds. She came into hospital with something that seemed minor but ended up not wanting to eat & drink & then getting aspiration pneumonia. She was a good age, over 90.

    I spent hrs by her bedside during the day & also made my peace with her. We did not have the best of relationships. She was always angsty all her life, not just with me & fell out with so many people. I asked the nurses on duty to let me know as soon as anything happened & then I got the phone call at 5.30am. The staff nurse had been with her when she passed & it was peaceful. So someone was there. I do believe she tried to pass while I was there but it wasn’t her time just yet but I didn’t see her afterward as I wanted to remember her as she was in life & not in death.

    It’s very personal to you of course & if you decide to fly over then you have to accept it may go either way. Xx
     
  10. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you all so much.

    Today mum was sleeping , again only a few sips of liquid.

    She has a syringe driver with morphine, also 2 other meds but the names escape me right now.

    Her oxygen is 45.
    I did ask the nurse how long she thought mum had left, (why do I feel awful asking!!!) she said she can't say, she did think the antibiotics were working a little.

    After reading everyone's replies, I have decided to take it day by day, something is telling me not to go right now.

    I spent so much time with mum, hours everyday for 5 months. I am glad I could do that, I talked away to her, watched "Columbo" on TV and asked her if she thought he'd get his man! Of course she didn't know what the heck I was talking about.
    I brushed her hair, she was always very particular about her hair, it was usually up on end so I'd say "Mum, what's going on with your hairdo?!!" Her eyes lit up at times.

    Sat and held her hand.

    I am so glad we did spend together.

    This is so difficult. Thank you all again. xoxoxo
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    That is a lovely memory Dino.

    It sounds to me like she is walking a tightrope and could go either way.
    ((((((((((((((((((((((hugs))))))))))))))))))
     
  12. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you Canary xx

    Called again today and mum is sleeping most of the time, still hardly any liquids.

    The night nurse said she is "very poorly" and no better.

    I'm sitting here thinking about mum and what she would want, do you know if I would be allowed to say I don't want mum to have the antibiotics?

    I have Deputyship for her and I'm next of kin.

    To try and cure a chest infection is just prolonging this hell for her, I know she would not want this.

    It's no life, emaciated lying in a bed, not knowing anything.

    I'm going to try and get ahold of her Dr again tomorrow, the nurse told me the Dr. wants to talk to me, I'm impatient with this as it's not that hard to figure out how to call the US!!

    Dr is never available when I call, I am 7 hours behind in time and have called when it's been 2am here but still no luck.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    Its not easy getting hold of doctors and the hospitals usually block international calls so you have to get special permission. I sympathise with you - communication with doctors can be frustrating. Have you tried asking what time to phone?

    At least they want to talk to you.I think it would be perfectly acceptable for you to say that you dont want to continue the antibiotics. This may, in fact, be something that the doctor wishes to discuss with you. Sometimes, I feel that people want to try and preserve life at any cost, but maybe what they are doing instead is merely prolonging death.
     
  14. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,944
    Female
    East Midlands
    You might well find as the doctors did with me is say that in actual fact, the antibiotics aren’t working. My mum was on 2 lots of antibiotics & on fluids & nothing was working as her body as clearly shutting down. My fiancé & my cousin were with me when the drs spoke to me about withdrawing meds & just keeping mum
    comfortable on the syringe driver meds. I think if the dr wants to talk to you about that then it may definitely be time to fly over but it is your choice.

    Nobody thought my mum would last more than 48 hrs on the syringe driver but she went on for a week. She occasionally had a very tiny bit of food & drink but over the last few days, she just didn’t want anything. Surely the hospital staff know you are abroad so they should organise a time to call you. I would call the hospital & speak to the most senior nurse on the ward & try to organise this xx
     
  15. Louise7

    Louise7 Registered User

    Mar 25, 2016
    979
    It's not clear whether your Mum is in hospital or in her nursing home but if she is in hospital it may be worth contacting the PALS team. The hospital website should give details of how to contact them by phone and email. Explain that you need to speak to the doctor urgently and hopefully they will arrange this. If your Mum is in her nursing home and it's the GP you are trying to get hold of, when you get through to the surgery if her doctor isn't available ask to speak to another one. They would at least be able to let you know what the current position is and you can raise your concerns about the anti-biotics too.
     
  16. Dino

    Dino Registered User

    Aug 7, 2011
    76
    #16 Dino, Jun 19, 2019
    Last edited: Jun 19, 2019
    Thank you all so much.

    Mum is in a care home.

    Finally just spoke to her Dr. I caught her before she left the surgery, apparently they can't call overseas...oh why didn't the receptionst tell me this on Monday:(

    Dr was very forthcoming and kind, we decided to withdraw antibiotics as. we both feel it's only prolonging this for mum. Just keep mum comfortable.

    Dr said when she saw mum on Friday she did not expect her to be here today but even though she was a little better, eyes open and following her, she is still very poorly and if mum continues to not eat or accept liquid, it could be days or up to 2 weeks. But that mum has rallied before so she doesn't know.

    We also talked about my being there and if mum sees me and her granddaughter it might keep her holding on, an awful, awful decision to make:(

    Dr said if I want to be with mum at the end to come on now but...she could improve a a little.

    I know I shouldn't but because I live in the States, I'm not going to be able to come over now then come back then go over again.

    I have decided the best thing to do is see what the care home says tomorrow then Friday and go from there.

    I am so upset and feel either way my decision is going to be the wrong one:(

    Dr said mum's face was blue on Friday , not expected to survive but today has a little more color. I hate all of this.
     
  17. Ohso

    Ohso Registered User

    Jan 4, 2018
    139
    My heart goes out to you, there will be no right or wrong here, there may be more heartache though if you decide to go and begin to imagine arriving on time to be with her at the end, only for it to happen sooner than you think and be mid air and be greeted with sad news on your arrival.
    Have you considered a phone call to her, often l hear that being told by a loved one, its ok to go is all someone needs to enable them to pass away peacefully, and that might be the connection you need.
    My other thought would be to have someone read a message from you, to her, sent by email maybe.
    Above all, be kind to yourself and treasure the time you did spend with her, l bet she does xxxx
     
  18. la lucia

    la lucia Registered User

    Jul 3, 2011
    591
    When my mum was dying (age 98) her 93 year old sister phoned on my mobile and I held the phone to my mum's ear while her sister spoke to her. My mother knew it was her. Maybe you could ask if that's possible? Just thinking of an alternative to trying to get there.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.