1. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    When I visited Jan last, yesterday, I saw the GP for the care home in the office and stepped in to have a chat with her.

    Lately, Jan has dipped a bit more - unable to crawl, unable to raise herself now from a position lying on the floor without help, what goes for speech even worse than it was, etc. On top of that, she is starting to have problems swallowing - liquids, mostly.

    The GP said they had just started to add thickeners to Jan's drinks.

    They fear her becoming dehydrated because that brings additional problems, so need to be able to have her drink as much as possible. I explained that much of the problem was due to time - the care assistants just don't have time to feed Jan drink at the very slow rate she can take it in.

    Also, that if she self serves, using a straw, she can regulate what amount she drinks and how often - but that requires someone helping as well.

    The GP explained what I already knew - that swallowing difficulties are common with more advanced dementia.

    The olanzapine dosage has been reduced because as time goes by, Jan seems to benefit from it less.

    The thing that made me blink a bit was when the doctor said that we were in unknown territory for her, regarding Jan's progression. 15 years is longer than most young onset patients have dementia, and the doctor really has no idea how things will go from here on. Jan eats really well, so is very strong. Her immune system - degradation of which frequently leads to viruses etc - is good.

    By now it could have been expected that Jan would have succumbed to something - many other young onset residents have done so at the home.

    As things stand, the situation could go on and on. The doctor was almost apologising that the high level of care that Jan receives is resulting in her time in hell being made longer. This fact had occurred to me some time ago.

    It is a difficult situation.

    Naturally I want her suffering to end, yet I can't comprehend what life will be like without her being there.

    I want her to have the best possible care [can't say 'quality of life' because that has ceased to mean anything for her] yet I don't want that care to prolong her state.

    I think it is all called hell on earth.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    It sounds terrible , Bruce. You can't ask the NH to withdraw care, (unless you knew the end was imminent). And obviously you wouldn't want to, because she's still your Jan.

    You know Jan has no longer any quality of life, but in the absence of any other physical problems, she could live for years in that condition.

    It's an impossible situation; so stressful for you. There just aren't any answers that anyone can give you. All we can do is offer support, which you know you have.

  3. annesharlie

    annesharlie Registered User

    Oh Bruce, I just feel cold reading of this horrible horrible situation. It is so unfair. So hard for you, 15 years, I had no idea it had been that long.

    Do you have a do not resussitate order in place? Ron just completed a living will, and representation agreement and has clearly stated that he wouldn't want even antibiotics or tubefeeding if he was in a situation like your Jan. I think that too often with modern medicine they won't let nature take it's course, and I wouldn't want suffering to be prolonged if it were me. I have recently met a new friend whose husband died in 2005 with an Early Onset Dementia. He was really poorly, and had to move into full time care - he ended up aspirating vomit and this caused an infection in the lungs. She knew his wishes, and refused antibiotics, - he died 2 weeks later, and she said she thanks God every day that he went when he did, she knew he was already well past what he had told her was an acceptable quality for his life. Some of the medical staff at the hospital were very supportive, others would not even talk to her. It is a terrible situation and there are no easy answers.
  4. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    no intervention


    I was in the same situation as your friend and asked for no intervention. Also our family thanked god when Ron was released from the years he had been suffering with VAD.

    Cynron x x
  5. connie

    connie Registered User

    Mar 7, 2004
    Oh Brucie, my heart goes out to you. What can I say - nothing. Just to let you know I am here for you, along with everyone else on TP, of course.

    I would add that I thank you for sharing your everyday experiences with us. It may be a road some of us will have to travel. My dear Lionel, like your Jan, is a young, physically strong man. Apart from the dementia side of things he is certainly a lot stronger than I am. (Oh what am I saying,...just thinking aloud)

    Sending love n'hugs, Connie
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    thanks everyone.

    Yes, I have told the home that I don't want resuscitation - when the time comes - and the doctor knows that, hence the sort of apology i guess.

    But don't get me wrong, although I want Jan to be free from her ruined life, I can't find it in myself to wish her gone. I will make sure that everything possible is done until... well, until whatever eventually happens.

    I think it will be a long haul and that is something I'm now prepared for. I just wish Jan could be free, for her sake. For my sake? I'll cross that bridge when I reach it.
  7. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Just reading your post - just wish I could offer the right words but my heart and feelings are with you - what a 'hell' of a situation. You have been a tremendous support to everyone on TP and now it is our turn - but WHAT CAN WE DO.
    Thoughts are with you Beckyjan
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Bruce, The rapid decline, the slow decline, each as painful as the other.

    When a person dies a sudden death, from a massive stroke or heart attack, we say it`s shocking for the one who`s left, but what a good way to go for the individual.

    When we have to witness this slow decline, it`s our agony too. I know my husband and your wife, and how many others, suffer from a condition called Alzheimers. I know how the husbands, wives, partners, sons and daughters,and grandchildren are victims of the condition as well. From the day of diagnosis, throughout the slow decline we care and watch and suffer with them.

    !5 years of suffering, 15 years`decline. Such a long time. Too long.

    With love to you both,
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Bruce,
    Just a practical note. Drinks. I read somewhere, maybe on here, that dementia sufferes dribble, because saliva is so near the body temperature that they cannot discern that it is there; so when mum seemed unable to drink tea (which naturally we allowed to cool sufficient so that it didnt burn her) we tried ice cold milk, and water - she seems to take these better.
    Just a thought.
    Love Helen
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    yes, Jan has started that, but the way she dribbles seems a little different from the way others at the home do.

    For ages there have been residents who walk around, dribbling constantly, or they sit there, dribbling.

    With Jan, who can neither walk, nor even sit well, her dribbling almost seems to be:

    1) through concentration
    2) through gravity

    To explain, most of the time Jan can be found, lying on her front, head to one side - or even head down as well [this has resulted in her nose being almost permanently bent now, a bit bizarre]

    When I help her to try to get to her knees, she puts so much effort into trying, for quite some time, and it is as if she holds her breath while doing that.

    As she releases her breath, so the saliva comes - it is quite thick stuff too, not wishing to put anyone off their food...:eek:

    If Jan lies on her front, face down, for a long period, she also dribbles - this may be gravity at work.

    When she is in her chair, sitting upright, she does not dribble.

    I'll chat with the doctor about cold drinks - thanks for the tip. Anything is worth trying.

    I generally take in apple juice, or cranberry juice and she takes that, if very slowly. But she also takes tea from me - again, very slowly and in tiny sips.

    I don't think the staff can ever afford that much time.
  11. daughter

    daughter Registered User

    Mar 16, 2005
    As you know Bruce, I was a long time observer of my Mum's reaction to Dad's dementia and I know that whenever she reached a point of no return, (e.g. Dad was to go into a home / Dad was to start wearing pads / Dad's final stay in hospital), she sounded just the way you are in your posts about Jan - resigned and prepared for the enevitable (whenever that might be); wishing it were over for all concerned, and yet somewhere deep down also still hoping for that miracle where Dad would get all better.

    Through it all I saw that she was resolute in her desire to look after Dad and give him the best care she could within the confines of the situation, just as I recognise it in you. Thinking of you.
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Bruce,

    Something I don`t undersatnd..........you say Jan has problems drinking, but eats well. So is her swallowing mechanism able to cope with solids better than liquids?
    I would have thought it would be the other way round.

    Do you know why?

    With love
  13. cris

    cris Registered User

    Aug 23, 2006
    I'm in tears for you Bruce. I understand your thinking. My thoughts are with you.
  14. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    Dear Bruce

    I do admire you for sharing your story with us all on TP.

    What can I say that hasn't already been said, except you & Jan are in my thoughts.

    Love Linda x
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    yes, one would think that - but never forget the ability of the effects of dementia to catch you on the wrong foot.

    Jan is still basically on a normal - rather than soft food - diet. The diet has been changed a little towards the soft food option, but with soft food, the stomach itself begins to forget how to digest peoperly, and Jan's doctor wants to retain that ability as long as possible.

    That helps me because it is a shred of normality we have left. I can see what Jan eats and I can think [usually] "hmm wouldn't mind some of that myself." - the food is very good there.

    By the way, if I really wanted it, the home would provide it... another major plus with this excellent care home.

    Jan has always been a slow eater and drinker, reflective, if you like - or maybe just not pig-like, as I am. :eek:

    Since she has to chew her meals, that slows down the process of swallowing, perhaps to a level she can manage well.

    Drinking normally requires a series of slurp-gulp operations, and this is automatic for most of us, as is the 'close off wind pipe to prevent choking' operation.

    With dementia, and when a person is not able to feed themselves liquids, they may be given more than they can handle before they need to take their next breath. Windpipe opens, fluid still there - choke.

    This is where really slow feeding of liquids comes into play. The problem is that a care assistant does not have the time, and probably does not have the realisation, or patience, to slow the drinking down to Jan's pace.

    Especially since the drinking mostly takes place at a communal mealtime when their attention has to be everywhere. In Jan's home an increasing number of residents now require to be fed by staff.

    Hell has a million different rooms and I fear we've not seen more than a fraction of them yet.....
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you Bruce for explaining it.

    However painful, it really does give some further and valuable information, for those of us not yet at that stage.

    With love xx
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Just as an update to this, I fed Jan some apple juice when I visited today and noticed that she was far better able to drink it through a straw from her right hand side of her mouth than from the left.

    Jan has mixed dementia and the vascular element of that has tended to hit her left side.

    Jan has no way of telling anyone how the affected side feels - or does not feel.

    I have noticed that her left side of her face tends to droop a little at times.

    Certainly her left hand and arm are less strong that the other one.

    I asked the care assistant to give more fluid when I left and told her to do this on Jan's right side.

    I'll speak to the doctor when I next see her.

    Got to be on the ball because if I'm not, nobody else is. Bit more of a responsibility....

    Again, non verbal body language is just so important. sometimes we don't look at the whole picture. In our case, I have to keep my head so close to Jan's head to try and spot changes in expression as our only real mode of communication that maybe the rest of her doesn't get enough attention.....:eek:
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Bruce

    Reading of how careful you are with Jan's feeding and general care, and also Connie's care for Lionel, makes me wonder about patients who don't have immediate family to keep an eye on things and help out.

    I imagine they don't survive as long?
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    the alternative is that they might have a much worse time, but still live as long.

    It is all a nasty quandary.

    There are some who might say, "don't be so careful and you will shorten their time with dementia", and that might be convincing except for one thing - love.

    Much as I wish Jan could be freed from her very difficult life, I have to see her as she is, brave, strong, lovely - and someone I faced 39 years ago and told that I would look after no matter what. I can still see her standing there now, smiling.

    All I can do is make sure that everything possible is done to keep her comfortable.

    The problem is, from a personal point of view, that there is so little I can do now. One time I could take in special foods, flowers, stay for ages and walk her in the gardens.

    I can no longer do any of those. The most I can do is take in a carton of apple juice and try to ensure she doesn't choke on it.
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Oh dear, Bruce, I seem to be putting my foot in it all round just now!

    Please believe that I wasn't suggesting that you should withdraw care. Having read all your posts, I know you too well for that.

    It was a straight question, and I'm sorry if I expressed myself badly.


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