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  1. #1
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    Thumbs down Mum is later/final stages of cardio-vascular dementia

    I haven`t posted for sometime, coping with the gradual decline of my Mum. She is an EMI unit staffed by carers. I went on holiday 2 weks ago, and on the day before I left, as was surprised to read in the case notes, Mum was found the car park by resident relatives. I thought no more of it apart from carers now alerted. Off on holiday, enjoyed a relaxed week away. Rang i mid week, carers say she is restless. Carers thought she was looking for me. Got back the following Saturday, what a shock to see the difference in my Mum, she had been wandering around the unit night and day, tapping on windows, not eating nor drinking mobitity going. It wasn`t me she was looking for becuase whilst in the flat with a carer, off she went, so we followed and observed. By this Wednesday mobility completely gone, probably due to weakness not eating etc, also incontenance now and on Friday we all thought this was the end, however with care and encouragement, she has eaten some solids and appears to have rallied. She looks better in the mornings, and is completely shattered by the afternoon. I took the week of work last week to spend time with her and organised wheelchair, more care visits etc. She isn`t ready to be bed-bound, but I don`t think it is that far away, if she survives that long. Its been a terrible week. I`m a mess trying to cope and come to the terms with the sudden decline. Not sure I can return to work yet. Its a day t a time. This massive decline caught me by surprise and its taking me time to adapt, she my leave me for good tonight, tomorrow, next week ??? Sorry just needed to let you know. She is now sleeping more at night and carers now calling in every 1/2hr during day and night to check on her. This is so so hard to deal with. I was just thinking I was recovering from the trauma of last year having made the discovery there was something seriously wrong with Mum, choosing a home, moving her with her permission and witnessing her decline when BANG.
    I`m still taking the Kalms!
    Bye for now and thanks
    Heather x
     

  2. #2
    I'm so sorry to read that Heather. I don't know your situation in detail but would your GP sign you off for a further week so that you can look after your mum till she is more settled? xx
    piedwarbler


    Prayer of the Breton fishermen: “Dear God, be good to me. The sea is so wide, and my boat is so small.”
     

  3. #3
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    I'm sorry things are as they are Heather. The decline was quick with my mum too. Thinking of you. x
    Izzy
    Carer and Volunteer Moderator

    'The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life.'
    Robert Louis Stevenson
     

  4. #4
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    Hi Heather, I hope your mum is being well looked after by the carers, don't be afraid to be insistent about things if you need to and I hope your mum is pain free and comfortable. I have noticed with my mum that if the least little thing is wrong she goes downhill very fast, and that her deterioration has been in steps then levelling off rather than a steady decline.

    Pippa x
     

  5. #5
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    Thank you all.
    Steady decline over the past few months included refusing medication, forgotton what to do with the tablets, she chewed them, and now very rarely accepts them. These are high blood pressure/cholesterol and renal medication. Going to bed very early in the afternoon. (No treatment for dementia recommended) Perhaps this was the start of the sharp decline. You just don`t know what to expect next. She has remained quiet, calm and smiley since her move. Carers are wonderful with her, management though do need time and nagging to kick into action, saying they need to check with the social worker. However after writing my post, this afternoon saw a transformation. She was sitting, in the wheelchair, at her usual table with her friends, and she ate her meal without prompting, so today solids and some liquid accepted perhaps she is recovering from the sharp decline of last week, mobility/incontenance.Perhaps a levelling off as stated, then perhaps another very sharp decline to come, but when? She wants out. Get rid of them she says. Said I could drive her OUT. So very lucid again. Took her out in the wheelchair in the enclosed garden, telling her we have to wait for Dad to come and take her home. (Dad died 32 years ago) and she smiles. Oh the ups and downs, the deceit too in order to keep her calm, safe and cared for.
    bye for now and thanks
    Heather x
     

  6. #6
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    Perhaps it was a UTI

    Sto peaking a friend who does reflexolgy about my Mum who now appears to have rallied round, we think the episode could have been a UTI, because following a course of antibiotic ( Dr prescribed it because he didn`t know what was happening and there was no way we could get a sample) she is now eating and has found her feet again and walking around the unit trying to get out.
    She has bruising on her back, and we thought it was due to the falls, but it could be kidney infection/renal failure. I also notice she keeps looking at her feet and her lower legs are tender. We think perhaps she can`t feel her feet, so keeps checking they are there, leg pain could be part of renal failure. She hasn`t been taking tablets now for 2-3months on and off and hardly any now. She began to chew them, presumably because she forgot what to do with them - perhaps without the antibiotic she may have died last week.
    Just a thought
    Bye for now
    Heather x
     

  7. #7
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    Oh catbells my thoughts are with you - lost mum through vascular dementia April (after she fell and broke her hip wandering at midnight in her care home room without her stick), dad 3 yrs before with dementia.Its so hard when there is nothing you can do to help. At least you got her in the care home - she isnt wandering around the streets not knowing where she is esp with the weather getting cold now. Mum was once found on a bench outside the post office freezing cold/dazed/confused with her trolley full of shopping - thank heavens for the person who called the ambulance.After a short stay in hospital she was returned home (her right but just more stress for me worrying about her)try to look after yourself xx
     

  8. #8
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    Hi Catbells
    Glad to hear that your mum is rallying
    My mum has vascular dementia and in July had a rapid decline. She was refusing to eat, drink, walk and was sleeping alot. The care home said it was progression of the dementia, I was unsure as from talking to other people I thought the decline was too rapid. Luckily the GP agreed and admitted my to hospital where they found she had quite a bad UTI. She improved while she was in hospital and started eating drinking and walking for herself. She also continued to improve when she came out and has now reached a level. I agree with Pippa that vascular dementia seems to progress in steps rather than a steady decline.
    Julia
     

  9. #9
    Quote Originally Posted by Fastwalker View Post
    Hi Catbells
    Glad to hear that your mum is rallying
    My mum has vascular dementia and in July had a rapid decline. She was refusing to eat, drink, walk and was sleeping alot. The care home said it was progression of the dementia, I was unsure as from talking to other people I thought the decline was too rapid. Luckily the GP agreed and admitted my to hospital where they found she had quite a bad UTI. She improved while she was in hospital and started eating drinking and walking for herself. She also continued to improve when she came out and has now reached a level. I agree with Pippa that vascular dementia seems to progress in steps rather than a steady decline.
    Julia
    Progression in steps rather than a steady decline is how it has been with my husband over the years (vascular dementia), although last year the time between 'downward steps' was reducing. Then he fractured his hip and was in two acute hospitals over six weeks, with a rapid decline including loss of mobility, gradual incontinence, and much more.

    He was then transferred to a Community hospital for elderly (with and without dementia) and within a month was doubly incontinent. After a while he was critically ill when his diabetes went completely out of control. Several days bed bound, unconscious, semi-conscious, delirious and I feared he would not make it. Within a few days a drastic weight loss, he was mere skin and bone.

    He did pull through, was strapped into a wheelchair 11 days, unable to stand, speak, feed himself and I thought this is it, he is not going to recover from this, too much of a decline. But he did improve. Although never back to the stage he was at prior to hospitalization.

    However he never came home again, has now been in a care home for over five months, and in some respects is better than he was all the months in hospitals. Abilities have been lost or deteriorated, but he now feeds himself, no problems, great appetite, and shuffles around on a zimmer - but forgets to use it. Although I see he is now spending more time just sitting, and sleeping. But at times he has more lucid periods than for a long time.

    He is no longer doubly incontinent, has regained his ability to know when he needs to go to the toilet during the day, although is semi-incontinent now. Particularly overnight. Totally dependant on personal care. His speech has declined quite a lot - but then again, there are days when it is better than others. After a lengthy period of struggling to speak, just when I think it is going forever, he surprises me.

    Sorry this is so long.... The point being, in some cases with dementia you just never know. With my husband, due to various health problems it has been a case of downturns I thought were forever, they lasted a while, nursing staff and doctor said he would not improve, but then there were improvements. Each time more loss of abilities, and then some recovery of certain abilities even if not as they previously were.

    It is traumatic, always the fear that a downturn will be permanent, and escalate. And yet when something else is going on in the body, an infection or other health problem, once it is recognised and dealth with then there can be improvements, it is not always the beginning of the end. We just do not know which way it may go.

    As you said, Heather, you simply do not know what to expect with dementia... However I hope your Mum does continue to rally, and does level out. It certainly does lift your heart when you see improvement, but plays merry h**l with it as well.

    Loo xx
     

  10. #10
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    Unhappy Mum now on a mission to GET OUT

    Just as I thought she was doing well, ate her dinner yesterday was quiet and smiley at my visit BANG! a call from the home dinner time today to tell me she has been back and to to the front door and when visitsors come in she was out. Very restless all morning. When in the dining room, got out of her wheelchair and went to the main door. When I arrived she was making her way again to the main door. She was like a steam roller, very strong (on death bed on Friday!!). Carers suggested I took her out in the wheelchair to see if this would settle her. Strapped her in. She told me exactly where she wanted to go. Once out on the path she told me to leave her there and go away. Asked where was she going, to my home where I lived last year before coming here (Whow! she has been at the EMI unit for 12 months this month - where did this come from?) Tried to comfort her but to no avail she was on a mission. Obviously had to take her back and her pleas not to were heartbreaking. Tried walking the corridors around the small, homely unit even left her in the tv lounge for a while, but she was looking about and tried to get out of the chair. I suggested to carers they tried to put her to bed, in the hopes the this would trigger the brain that this is where to rest/sleep whilst I phoned the doctor for advice. He prescribed dizaipam 2mg, not too strong. Anyway ringing in tonight Mum was asleep without the medication, however, they have the means to calm her if necessary, so we wait to see how she is tomorrow. It has been very very distressing to witness this even when carers taking her back to the flat, her pleas were terrible to hear. 5 days ago not expected to live, now a troubled soul. This is a first, she has remained quietly accepting, calm, affectionate and smiley, but I`ve seen the horrible side of what this condition has done. It is so hard to separate Mum`s personality to the personality I`m witnessing now. Carers wonderful, made me a few cups of tea whilst I crumbled. What next?!
    Thank you for being out there just to write my feelings down and get some of this out of my system.
    bye
    Heather x
     

 

 

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