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More Asleep than awake in last/severe stage vascular dementia

Discussion in 'Middle - later stages of dementia' started by flower1, Mar 21, 2014.

  1. flower1

    flower1 Registered User

    Apr 12, 2013
    Have just come back from visiting my mum in the nursing home who I have been told is in the last/severe stage of her vascular dementia. One thing I have noticed more and more recently is that she is more asleep than awake and I am when I am sat with her she will open her eyes for a bit while I hold her hand and then 5 minutes later she is asleep again. I spoke to one of the care staff and she said that my mum is like this most of the days now (as I am not ever there all day with her to see this). I just want to know if anybody else has experienced this and what does it signify (is her body just too tired to stay awake anymore or is this a sign that the end is near?). Just to add Mum is totally immobile and has to have everything done for her, they are still managing to feed her soft diet and thickened drinks. Thank you for reading xx
  2. Boney

    Boney Registered User

    Dec 9, 2012

    Oh how I wish I could answer you for then I would know where my mum is at too. She has been just the same since Christmas but in the last week or so been refusing food and only taking the odd spoonful and dips of drink. It's awful not knowing how she feels and how long she can live like this. My heart goes out to you x
  3. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Hello...this is sad but at the same time it is nice that Mum is calm and peaceful. There is no time limit for the final stage but as long as Mum remains comfortable you can have a lovely time just sitting, holding her hand and remembering, out loud if you like, she'll know you are there.:)
  4. Fed Up

    Fed Up Registered User

    Aug 4, 2012
    My mum is like this too, can't keep her eyes open I'm so sad as my son gets married soon but she won't be able to go.Really mumbling and although she still knows who we are she is so very tired. It seems so cruel and I'm not talking of euthanasia but this is so hard to deal with. My sympathy to you lets hope that the end is just a new beginning ....
  5. FifiMo

    FifiMo Registered User

    Feb 10, 2010
    This is actually quite common in the late stages of dementia or the last stages of life. There is a bit of a vicious circle that develops. The person reduces their intake of food and fluids. This in turn causes the body to react by conserving energy and so the person becomes more immobile and likely to sleep. Then you have the "no/little food vs sleep" scenario. You often find too that because someone is peaceful and sleeping that they are not apt to want to wake them to take more fluids etc onboard. This then leads to a scenario where there is insufficient food and fluids being consumed to be compatible with life, unfortunately. As you move towards end of life then the sleeping gets longer and longer and where the body previously tried to conserve energy, it now moves to trying to protect the major organs but often there is not enough to go around. This can mean that there is a build up of toxins in the body and this too can cause people to sleep even longer still. Eventually the organs start to shut down. You notice less and less urinary output for example as the kidneys stop functioning. This then continues until death occurs.

    On a more spiritual/psychological level, the effects of the sleep also creates distance between the person and their loved ones. It is considered to be a natural thing to happen as someone drifts away and starts to loosen the ties enough for them to leave this world and the people that they know. Some people experience difficulty in doing this and you often hear of people lingering on and on, maybe because of worries about leaving a person behind, or they might be waiting for a person to arrive (eg a child who is on their way). Sometimes however some people need to be given permission to leave. Need to be reassured that their loved ones will be fine and will look after each other. Having done this, it can be just a number of minutes or hours before the person dies. It is as though they needed a loved one to sever the ties that were holding them there.

    Whatever is happening, and irrespective of how long a person might have left to live, there is an opportunity for loved ones to spend time with them. Accompanying them on this final part of their journey of life. This is a comfort to the person who is dying and a privilege to the loved ones that they can share this final act together.

  6. Early riser

    Early riser Registered User

    Mar 16, 2014
    A beautifully worded response Fiona.
    You bring hope and comfort to so many people.

    Sent from my iPad using Talking Point
  7. Pigeon11

    Pigeon11 Registered User

    Jul 19, 2012
    My dad's like this too. Either asleep or has his eyes shut, 'resting' and unresponsive. In fact I'd say he's been like it for about 2 or three years. He can be roused easily but doesn't even open his eyes to eat.

    I find this stage of the illness very difficult but at least he's calm and quiet. Fiona is right about the distancing. I know he can hear me talking to him even if he doesn't understand my words and can't converse any more. But I think he is actually choosing to ignore me becuase he doesn't actually want to be here and can't somehow manage to leave. It's very sad.
  8. pamann

    pamann Registered User

    Oct 28, 2013
    How true your words are, visited my Aunt yesterday in CH sleeping almost all the time she is 96 looks at peace with the world enjoyed reading your post

    Sent from my GT-P5210 using Talking Point mobile app
  9. SisterAct

    SisterAct Registered User

    That was lovely Fiona.
    A calm, pain free passing is what we wanted (and got) for Dad.
    Thinking of you Flower1 and others on this stage of your journeys
  10. flower1

    flower1 Registered User

    Apr 12, 2013
    Thank you for taking the time to reply and sorry to hear that your Mum is at a similar stage. The not knowing without a time limit is so hard, especially as it prolongs, my thoughts are the same. Thinking of you x
  11. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Maureen, thank you for your kind feedback, much appreciated xx
  12. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Fiona thank you so much for taking the time to reply with such valuable feedback. It is hard to see what is happening but everything you wrote has really helped me understand and so lovely the way you have quoted it. Thank you, much appreciated at this hard time xx
  13. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi thank you for taking the time to reply. Sorry to hear that you are going through this too, I understand about your feelings about it being cruel and yes the talking of euthanasia crossing the mind as my Mum would never have wanted to end up like this!
    I feel guilty sometimes about the situation but there is nothing you can do except support and be there as much as I can (also balancing the demands of a young family and working etc). I pray that the end will not be too far away (as hate to see anybody suffer) but it is out of my control and yours too. I hope you can still enjoy your Son's wedding as life has to carry on (as they would want ). take care xx
  14. wilf

    wilf Registered User

    Mar 19, 2014
    Flower you need to make sure that the nursing home staff have had your Mum examined by her G.P. before accepting their prognosis. I care for my Mum at home and for the last 2 weeks she has been the same with wanting to sleep all of the time. I phoned Mums G.P. to express my concerns and he came to the house to examine her and take urine/blood tests etc. His conclusion was that for her age (90) she is in quite good physical health and there is no medical reason for the extreme fatigue. The vascular dementia has now affected reached the part of the brain that tells the body its time to be awake. Knowing that Mum is physically well enough to get up I have had to be 'cruel to be kind' by insisting Mum lets the carers wash and dress her and bring her downstairs. I have done this for the last 3 days and Mum has become more involved and is much brighter. It is extremely difficult but if your Mums G.P. says the same, try to force her to wake up.
  15. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Wilf thanks for your kind reply. When I spoke to one of the nurses at the home about it she said - "well it's not unusual for the elderly to sleep in the day - we have a few who do it" I did not know wether to take this as a correct answer or sarcasm?? I take on board what you have said about the GP and will re-visit this. Again many thanks and I wish you all the best with your Mum too x
  16. shandy123

    shandy123 Registered User

    Mar 3, 2013
    #16 shandy123, Mar 26, 2014
    Last edited: Mar 26, 2014
    Gone downhill since small pressure sore

    Hi All

    Mom is in last stages dementia, she has until the last week been not too bad and sitting in a recliner chair in the main room in the nursing home. This last week we have been told she has a small pressure sore in the lumbar region and needs bed rest and pressure relief.

    Me and my younger brother have court of protection for mom and we weren't too sure if mom had got this pressure sore or if it was easier for the home to leave her in bed rather than get her up twice a day as she always has bed rest in the afternoon, She already has an air mattress and a profiling bed. I asked the carer when she was washing mom and changing her dressing if I could see the sore and was told 'No' I wasn't allowed to see it.

    Mom has gone down hill rapidly this week since being in bed, I visit twice a day as it must be really boring for her, She is surrounded by pillows in bed , not sure if this is right because of over heating and the is the secretions in her throat have become worse by lying down. We understand that pressure relief must be done and was told yesterday that the sore is still there but not getting any worse. I just wandered whether this may be the end for my mother or is there hope that she may once again get up in the day, even for short periods when the sore has healed, any advice would be a help.

  17. Pigeon11

    Pigeon11 Registered User

    Jul 19, 2012
    Hi Shandy

    It sounds like your Mum is now at the same stage my dad has been for about 4 years. He has had a succession of pressure sores (grade 1 or 2) through all this time. He is in a hospital profile bed with an airflow mattress too and has spent the majority of his time in bed in his room as sitting in a recliner chair for longer than half an hour at a time tends to cause more pressure sores. Once his skin is stable again, they start getting him up occasionally but I have to say it's a bit of a vicious circle. The problem is caused by the fact he is completely immobile and very underweight at only 6 stone.

    As he is uncommuncative and unaware of anyone/thing around him, I take comfort that he no longer seems to need any stimulation so the long periods alone in his room don't worry him. Of course I have no way of knowing if this is the case but there's nothing I can do - all my spare time is spent with him and the NH is understaffed so the care workers and activity co-ordintors spend most of their time dealing with the more challenging residents.

    So based on my own experiences over this long time (as I don't have any medical knowledge) , I would say that, yes, it is likely your Mum will be able to get up again once the sore is healed. As far as whether this is the end for her, I wish I could answer that, but as you can see with my dad he has lived with pressure sores and being bed-bound for a very long time and although he has many other problems associated with being at the severe/end stage of the illness, he is showing no signs of going anywhere. This is both a blessing and a curse.:(

    You may have done this already but I would ask if your mum could have a visit from the skin integrity nurse and if you could be there to discuss things with her. They will give advice about wound care but also what is appropriate in terms of sitting out etc. Also, I would check what the NH is doing about making sure she is kept stimulated/entertained whilst she is in bed

    What I would say is that this is a very difficult situation to deal with - being in a 'limbo' state and with no idea how long all this will las, so you have my sympathy

    Hope this helps

    Take care
  18. shandy123

    shandy123 Registered User

    Mar 3, 2013
    Hi Pigeon 11

    Thank you so much for your very kind reply, The nursing home don't do anything to stimulate mom, they only go to her room to pressure relieve by turning her on to her other side and to try to feed and hydrate her ( when she will have it )

    I wasn't aware we could see someone about mom's skin as no one in the NH has said anything. I am so sorry to hear you are in the same position as myself and have been for quite a while. My father passed away last year and we haven't told mom, and I have terminal cancer to top it all, but have been in remission for the last 5 years again not known to mom, I go every morning and night for an hour each time to make sure she is cared for (must be a daughter thing !!) but my brothers don't see why I go as often as I do as they seem to think she doesn't know I'm there anyway - but I think she does and that is all that matters (must be a man thing !!) I am very aware that the carers do not have the time to be everywhere, I have caught one carer this week completing moms fluid and care sheet in her room up until 9pm and the time was 5.45pm so I reported it to the nurse as she had words with her about it.

  19. sorrel willis

    sorrel willis New member

    Dec 18, 2018
    Hi. My 87 year old father has dementia. He still lives alone and manages to make himself easy meals etc. Since I took his car keys from him he is lying in bed until mid afternoon or later before getting up! He says he still feels tired. Unless I’m taking him out he doesn’t bother getting dressed and because he’s not getting dressed he forgets to wash. Is this fairly normal behaviour?
  20. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello and welcome to the forum.

    Yes, this is common. My wife would sleep all day if I didn’t get her up. It partly a tiredness induced by the brain working so hard to stay ‘normal’ in the way it works.

    Now that you have found us I hope you have a good look around the forum and keep posting as the membership has a vast collective experience and knowledge.

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