How much longer?

Discussion in 'End of life care' started by Red Rosebud, Jun 13, 2015.

  1. Red Rosebud

    Red Rosebud Registered User

    Jun 13, 2015
    3
    Wales
    I have tried to find a forum to go with my thoughts and this forum seemed to touch on similar concerns. My dear mum with vascular dementia had a small stroke at Christmas leaving her with slightly slurred speech and minor swallow difficulty. She was quickly able to return to the care home where she has remained. By mid February her head appeared to have been forced to one side and fluid, nutrition intake rapidly decline. She declined to move from her bed where she has remained since. Treated for urine and a chest infection. End of April and discussion with G.P it was agreed she was reaching end of life, and syringe kit prescribed but to date not used. She has not really eaten for almost 7 weeks now, fluid intake only manages 50 mls if that. Her dysphagia is acute, gross and distressing for family to see her deteriorating and so weak. She remains mentally alert, conscious of who may be around, but mainly sleeps all the time. No longer interested in T.V her main companion since 30 years of being a widow. I am unable to be with her as I live over 250 miles away. I went up numerous times Jan - April, and my last visit to her we were able to say how much we loved one another, and I managed to arrange for the reverend to visit and spend time with her. Although it was a distressing visit it was also a positive time. I now wait and wish but there are times I think I just cannot keep sane anymore and I am just going to lose it either in a crumpled heap of tears or fit of anger. Always strong willed her fighting strength gives me courage when my mind is weak.
     
  2. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    I've no idea how much longer, I just wanted to reply to your post. My mum was in a similar position in the spring (including head to one side) and subsequently rallied. Luckily for me she lives in a care home close to me now, that wasn't always the case so I understand the extra stress that a significant distance adds. I'm glad you were able to tell each other you loved her - those will be precious memories and a comfort going forward. It's so hard being at a distance but I think you have done as much as anyone could in those circumstances, your mum is cared for, you've ensured her spiritual needs have been considered but I agree the waiting is awful. Thinking of you
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    Likewise I cannot give you the answer to this thread. But I am happy to be able to tell you that you have come to a great place for help and support. There will always be people on TP who know how you feel and have been in a similar place to where you are now.

    As MeganCat suggests, distance caring has its own particular torments. I had a small experience of that with my mum. Now I am watching the love of my life attempting to deal with a sudden downturn after a relatively stable period and it's bringing on the tears just writing about it. But TP has proved its value to me and so many others. I do hope you will find yourself that TP helps to give you the strength to carry on.

    My heart goes out to you.
     
  4. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Sorry about your poor mum's dysphagia, it must be so frightening for her.

    Hopefully your mum is peaceful if she is asleep much of the time. Apologies as you have probably already thought of this, but if there is some peaceful music you think would give comfort to your mum I am sure the carers would be willing to turn on a DVD or CD player for her when she is awake.

    So difficult for you to be so far away, just waiting for news that you fear hearing. Take care, hope you are able to sleep.
     
  5. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Hi RR I'm in very similar position living 220 miles away, Mum bed bound not eating getting frailer by the day. Have been with her today and I never know if it will be the last time although there is no immediate indication. It's emotionally exhausting and you just never stop thinking about it. I feel like I don't want to burden other people with it all either which is why TP is great. It's just **** for everyone involved, wish it was all over but don't want my lovely Mum to die but she's in such a pitiful state. Can't offer any solution just sympathy. Stay strong and drive carefully!xxx


    Sent from my iPad using Talking Point
     
  6. Ionna

    Ionna Registered User

    Jan 19, 2014
    35
    Surrey
    Hi Red Rosebud,
    In a similar situation. My mother is living with me and it is has been exhausting. She too declined suddenly at the end of April and is not really recovered since. Mum has Vascular dementia as well Alzheimer's and breast cancer - quite the cocktail. Everything is mounting up, but she still carries on. No idea where she is getting the strength from. I wish she didn't...but for some reason she is still with us and I'm finding it a real struggle to cater to her needs.
    Thinking of you and all others dealing with this and so many issues.
     
  7. Red Rosebud

    Red Rosebud Registered User

    Jun 13, 2015
    3
    Wales
    Thank you

    Just wanted to say thank you for your supportive and kind words. Whilst I would not wish anyone to experience the deteriorating health of my Mum and prolonged end of life process, it has been reassuring to know I am not alone and sadly my experiences are quite common. Mum continues with an incredible strength to appear to defy death to the amazement of her G.P. I am confident she is not in pain or too much distressed, is being well cared for and provided a tranquil environment with her choral and classical music.
    I am soon taking a week's holiday to enjoy quality time with my hubby and dogs by the coast. I am not going to be contactable and will contemplate upon my return making the long journey to see my Mum once again. I know because I will not have seen her for a few weeks it will be once again very distressing but as she remains alert I know my presence will give her joy and comfort. I am determined to demonstrate the same strength that as a caring mother she has to me.
    May you stay equally strong, well and find peace. Thank you:)
     
  8. Starsparkle

    Starsparkle Registered User

    Jun 28, 2014
    2
    End of life care

    To Rosebud and the others who have posted here - I am writing about my mums and my experience - she has been in a nursing home for about 18 months now and has Vascular Dementia. She has lucid moments which are few and far between and most of the time she doesn't know me. I like to think that on some level she still knows who I am. Her health been going down hill for some time, and she recently became ill with pneumonia. After a spell in hospital she was discharged back to the nursing home which is her home now, and where she seems to be at ease. Her swallow reflex is declining and the GP is making her final days comfortable for her. She spends most of the time asleep and my sister and I have been told three times to prepare ourselves for her imminent death, and still she is here. I guess what I am struggling with is the uncertainty of it all. I cant control what is happening to my Mum but I do want it to be over for me and her, at the same time I don't want to loose my Mum, she is my Mum. At times I can not reconcile that with the lady who sleeps and is struggling for breath. I just know that Mum will leave us when she is good and ready. Saying goodbye is never easy and sometimes messy. I am trying to cherish these last days with her but know it may go on for some time yet to come. I comfort myself by thinking of my Mum as she used to be a loving and caring Mum. Its is good to know I am not alone in this . Thank you to all the other thread writers who have also written here.
     
  9. oldman1952

    oldman1952 Registered User

    Apr 4, 2014
    45
    Feeding people with dysphagia

    Hi RR, I hope I'm not to late to discuss dysphagia and nursing care at meal times. On one particular stroke ward I worked on a few years ago. Patients age varied from just 30 to 99 years. Meal times were very easy to deal with. Most people had suffered a brain injury or had been given a diagnosis of varying types of dementia. We used the PEG system. ( Percutaneous Endoscopic Gastrostomy ) A tube was inserted in to their stomach's and during the day they had 3 250 ml drinks though the PEG tube, then at night they had a Litre of fibrous high protein, high fat content food. This went through over nigh and ran for 6 - 8 hours. Alternating, say 1 in 4 day's they also had water. The food bag had a tubing with 2 small bubbles in it. This was then inserted in to a special pump and a specific amount dripped through the night when they were in bed asleep. To insert the PEG the person is sedated and the tube inserted into the stomach by a Trocar needle Assemblée and a small balloon is inflated to stop the tube coming out. It is a very un-invasive procedure and takes about 10-15 minutes. Age is of no concern because every one has the right to health care, even when they got older. There should be no discrimination what so ever. Hydration of older people is of great importance. Please talk to your mothers GP about having one inserted. I have found that it makes a difference to and improves their quality of life.
     

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