Difficult Decisions

Discussion in 'I have a partner with dementia' started by Enigma, Sep 13, 2015.

  1. Enigma

    Enigma Registered User

    Sep 13, 2015
    6
    Bristol UK
    #1 Enigma, Sep 13, 2015
    Last edited: Sep 13, 2015
    My husband has had three malignant melanoma, the last one was eight years ago on the left temporal lobe of the brain, which is the, epileptic site of the brain. Having initially benn told he had two weeks to live, the surgeons decided to operate. Intensive radio therapy followed reducing him to a wreck for ten months, and increasing his sight impairment, so he is now registered severely sight impaired, and badly affecting his hearing.
    Since then he has been getting, what was eventually diagnosed as multiple silent seizures after which he would lose his speech, and fid it difficult to walk. This would last about half an hour to an hour and then gradually pass. He then had a number of falls causing bleeds on the brain, and at one time had to be hospitalised for three months, seriously ill, being introveniously fed, whilst the Consultant tried to balance the appropriate medication for the seizures.
    He has been diagnosed with vascular debenture, and over the last number of years has declined a lot, his speech being affected, his mobility, his swallowing, and he is incontinent wearing a convene.
    It has all been horrendous reducing an extremely clever man, with various talents to a shell (probably the wrong word). It's extremely sad to watch this decline with the inability to really help.
    Recently he went downhill rapidly, and could not stand or walk or respond to anything.
    Before this I had been trying to make sure he was having enough fluids ( using a large red mug - I am told that red is the last colour people with minimal sight lose). He was walking with a four wheeled walker which I steered etc. he couldn't be left on his own at all, so I got the help of two wonderful girls, so I could do the shop etc.
    As I could not manage him I had to make the dreadful decision to put him in a care home, and luckily found one round the corner, so I could spend lots of time with him.
    However, within one and a half hours after his arrival, the paramedics had to be called, and they found he had a chest infection. He had a swallowing problem and was aspirating some of the time.
    He has been in hospital now for three weeks, and keeps getting dehydrated, so has had to have saline drips a lot. I spend hours with him at the hospital, but he utters perhaps a few words each time, and these don't make much sense. He sleeps continuously but the consultant is going to reduce some of his medication to see if that keeps him more awake.
    I am still paying for the nursing home, so keep the room, but had found out that they don't do IV or sub cut fluids, but will call out the rapid response team to put a drip up, but I got the impression that they expect that to be continuously done. So do I try and find a nursing home that does do sub cut fluids, which could be miles away, or stay with the recommended one round the corner, and spend lots of time there, making sure he has plenty to drink. He has to be fed soft foods, and also has to be helped drinking. It is all so difficult as if he could walk, and respond I could keep him home. The other problem of course is the falls in the night! He forgets he has a convene, and tries to get up. I sleep with him so I can stop him.
     
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello Enigma, I am so sorry that you are suffering so and so is your loved one. There is nothing else I can say to help other than we are thinking of you. I hope you have other friends and family there to support you. You sound as if you have been a wonderful carer. I hope things get better soon.
     
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,971
    Suffolk
    Enigma, I feel so, so sorry for you. May you get the help you need to see this through. ((((Hugs))))
     
  4. Enigma

    Enigma Registered User

    Sep 13, 2015
    6
    Bristol UK
    Dear Quilty,
    Thank you for your kind support! Just in the hospital now but will have to wait until tomorrow to speak to the Consultant. Am so worried that once he's in the nursing home he'll go downhill! He had fluids again last night so is a bit more awake today. Thanks again Quilty.
     
  5. Enigma

    Enigma Registered User

    Sep 13, 2015
    6
    Bristol UK
    Thank you Spamar for your support! Most of my family live elsewhere, and it is difficult. Will keep you posted.
     
  6. Enigma

    Enigma Registered User

    Sep 13, 2015
    6
    Bristol UK
    Difficult Decisions.

    Thank you Spamar for your support! Most of my family live elsewhere, and it is difficult. Will keep you posted.
     
  7. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    I was told by a couple of NH in our area that if any drip was needed then the person had to be in hospital.
     

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