Reality bites-this is not how I thought it would be

Discussion in 'I care for a person with dementia' started by tre, Dec 8, 2015.

  1. tre

    tre Registered User

    Sep 23, 2008
    So here I am not quite believing the situation I find myself in. David is very poorly and confused. I am here coping because I have to but falling apart inside and having a little weep when no-one is watching and no-one is watching most of the time because I am doing this on my own.
    My poor husband was catheterised at A&E on 30th November and I was given dire warnings and instructions about keeping everything clean. Since that date he has not had a bowel movement. This morning at 11.00 am the District Nurse came and administered an enema. I knew this was going to happen but I sort of thought I would have help to deal with it. He cannot stand. It is not possible to get him to the toilet and how it works it that the poor man is lying in bed on a couple of pads and I have to wait for the enema to work and then clean him up afterwards single handed.
    When I had my children I had enemas. One was a pessary and the other was a funnel and soapy water job, the effects of which were almost instantaneous. I had erroneously assumed that he would be given something like this and that the nurse would be on hand when it took effect. Of course she has other patients to see and cannot just hang around here all day. She has given me her contact number and says she will try to come back if I get into difficulty.
    If this enema does not work in the next 24 hours or so then the GP has to come out to discuss what happens next. I guess you could say I am between a rock and a hard place.
    David is propped up in bed and his mouth is dry but when I tried to give him some water using a straw like I would usually do he could not remember how to suck and was just blowing. I have managed to get him to take a few sips using my grandsons baby feeder beaker.
    When we were dealing with the urinary retention I felt very sad as the thought came into my head that this may be his last Christmas. Now he is so poorly I have the idea he may not even make this Christmas.
    I do not want him in hospital. I feel very scared and alone and worry I may not manage and fail him.
    The nurse is talking to Social Services to arrange a care package twice a day.
    It is breaking my heart to see him suffer like this
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Oh sweetie I'm so sorry.
    Re the dry mouth wet a sponge & wipe around & inside his mouth. Also ask the GP/nurse about mouth care tips.
  3. jeany123

    jeany123 Registered User

    Mar 24, 2012
    Tre I am so very sorry, it must be breaking your heart, sending love,

    Jeany xx
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    This is terrible tre. Your husband sounds so poorly and you sound really frightened.

    Could you put a couple of old towels under him so you can roll them up when the enema works and dispose of them?

    If social services aren`t able to provide help immediately, would you consider hospital if you are able to stay with him.
  5. disi

    disi Registered User

    Oh tre, I am so sorry to read your post, and am sending you a big hug and thinking of you. xx
  6. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Tre, I am so sorry to hear your distress. It's good to hear that Social Services are arranging a care package, though. Help is at hand - hold on to that thought. And please, accept all of the help that is on offer! If you are ever in the slightest doubt about David's safety or comfort, please don't hesitate to call for more help. This is not the time to be thinking 'others are more needy'. YOU need the help now. You are entitled. You need the support. I'd be there with you if I could, but instead I'm sending you virtual support via cyber space! Take care. x
  7. meme

    meme Registered User

    Aug 29, 2011
    chase up the care package....not easy but you need them to move fast. You are doing your best and no one can ask for more. Your husbands body may not do as it should...just keep him as comfortable as you can and keep asking for extra help from the nurse when you need to.. x
  8. Risa

    Risa Registered User

    Apr 13, 2015
    I can't offer any advice but am sending you a big hug {{{Tre}}}
  9. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
  10. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    I'm sorry, tre. It seems to me that no-one should be left to deal with this on their own. It's appalling. All I can do is send my love and sympathy, and wish it could be more x
  11. tre

    tre Registered User

    Sep 23, 2008
    Thank you everyone. I am hoping that when the bowel problem is sorted he might pick up but just getting through this seems so daunting.
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    I am so very sorry xxxxxxxxxxxxxx I can't offer advice either but just want you to know that we are all here and I am praying hard and sending a hug too xxxxxxxxxxx
  13. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    Buffalo, NY, USA
    This is awful, and I feel for you.

    Do they provide any understanding as to why your husband has come down with these issues? I can understand constipation from lack of mobility, but not the urinary issues. Is his excretory system shutting down?
  14. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Oh Tre! I'm so sorry to read of your obvious distress. You need help now. Please try to find the energy to ring Adult Services in your area if you don't hear about the Carers soon. Easier said than done I know. Or perhaps a SW if you have any contact with one.

    You could try ice lollies for the dry mouth. Sorry I don't know what else to suggest. Your heart must be aching,

    Thinking of you


    Lyn T XX
  15. bemused1

    bemused1 Registered User

    Mar 4, 2012
    Tre I am so sorry. This is so difficult to deal with on your own. Yet if he has to go to hospital it has to be. Some things you just cannot cope with, it needs medical knowledge.
    You will not fail david. You have to do the most you can but also if that means help from others then take everything that is offered.
    I will be thinking of you and hoping at least his bowels can be cleared. That will help I think des and nurses do not appreciate the problems a blocked gut can cause
  16. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    Tre, persevere with the feeding cup. My husband can't use a straw, but drinks from a cup with a perforated spout. I help with it when he is in bed, just to prevent spills.
    If you need to get the GP out they may offer short-term help from a team of nurses who exist to help people remain in their own home rather than go to hospital. Here they are called the STINT, or Rapid Response Team. They would help out until a care package was arranged. Ask the district nurse about this, Tre. Try not to panic, and catch as much as possible in something you can throw away. It may not be as bad as you imagine, Tre, I hope you can manage.
  17. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    Just to add, the constipation could have had a severe effect on him, so chances are he could improve once that is resolved. Stay strong, Tre. xx
  18. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    Im in the same spot.

    my wife is only 62 . Has lewy boady.had to go in to hospitel last week. Very pooly. Sorry im dislix so bare with .she has not eaten 4 weeks now being told its only time ,only water .and engey drinks.sshe looks at me for help .cut me up big time .i been told by the docter if her hart fails. Do i want to bring her back. I had to make the dis.... Not to has i do not want her to suff any moor.then went home to like you cry.have to go to match at this point
  19. tre

    tre Registered User

    Sep 23, 2008
    Bill I am so sorry to hear about your wife. I am 63 myself but feel 103 today.

    David has had a small bowel movement and I managed to clean him up although he likes the head of the bed elevated and was distressed when I had to make it flat to roll him onto his side to clean him. Thank goodness we have a hospital bed or it would be even more difficult. Anyhow he is now cleaned and creamed and I have got a couple of bed pads and an old towel under him as best I can. I also managed to get him to take a little drink of water.

    The bed is now back in his preferred elevated position and he is asleep.

  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    Like others tre, i am truly sorry, in fact horrified, at what you and David are having to endure. I agree with sleepless that DN should organise Rapid Response - perhaps she is dong this as you mention that she is trying to arrange a care package. No-one should be expected to cope with such a situation on their own.

    I agree also that when constipation is properly dealt with he may well improve.

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