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Alzeimers, Vascular and Lewy Body Dementia

Discussion in 'End of life care' started by Thania, Sep 4, 2017.

  1. Thania

    Thania Registered User

    Sep 4, 2017

    My mother in law been diagnostic with Alzheimer's 3 years ago.
    She had living in her own Until August 2017.

    She had an scan on April and Consultant told my husband she got a mix dementia ( Alzheimer's and vascular) , but she been fine still eating, drinking, dressing, toilet, walking herself until 19th August when she started get "unconscious" fro a period of 5 or 10 minutes, she ended in the hospital.

    After a week in the hospital think get worse hallucinations, delusion, delirium, more tremors , sleeping over 20 hours a day , eating and drinking very little.
    She still recognise us.

    Doctors believe she also got Lewy Body Dementia ( which explain tremors and hallucinations ) . We thought she will pass away a week ago but she keep the same , we been told she can live like this for weeks or months.

    Any body with a similar experiences?
  2. Moggymad

    Moggymad Registered User

    May 12, 2017
    Hi Thania sorry I don't have experience of what you have posted except for Alzheimers. Hoping someone else sees your post & can reply. Best wishes
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    My wife has mixed AZ, diagnosed about 8 years ago (mid 50's), she has good days and bad days, sometimes I can't get her to sit down, other days I need a wheelchair to move her. She's incontinent, doesn't recognise me and only eats if she is fed.
    On the way out of the nursing home today I said "hello" to a woman, sat in a chair who's been on end of life care for 6 months that I know of and she acknowledged and replied to me, something my wife is well past doing.
    There is a lady in there who moved from the same secure assessment unit my wife was in to the same nursing home, she has the worst case of delirium tremors I've ever seen but she's still hanging in there over a year and a half later.
    My wife can "pass out" between mouthfuls of food sometimes for as long as 20 minutes while I'm feeding her, it's not unusual it happens some days.
    When you say "she been fine still eating, drinking, dressing, toilet, walking" my wife has to be fed, helped with drinks, dressed and is doubly incontinent and can walk short distances if helped, based on the other residents in the home she could go on for years.
  4. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    #4 lemonjuice, Sep 9, 2017
    Last edited: Sep 9, 2017
    My mother has sub-cortical Vascular Dementia, caused by her long-standing heart disease which she's had for over 40 years now and she may also have Alzheimers. She is now 89 and has lived beyong the 'expected life-span', having had (visible) symptoms of the Dementia for 12-13 years, by the way.

    She's been having 'episodes of unconsciousness' for over 4 + year now, though her 'initial one caused by heart failure and emergency hospital admission was over 5 and a half years ago. She was unconscious for over 10 hours, all through the hospital tests and I was asked to prepare myself. However she 'recovered' with a huge downturn in abilities and I could no longer cope with caring for her and had to put her into a NH.

    For the pst 2 and a half years she's received no medications, not even for her heart and had a 'Just-in-Case meds.' bag, apart from 4 daily doses of paracetamol, in case she was in any pain. About 2 years ago she started suffering seizures rising in intensity to one every other month last year and now coming roughly fortnightly. In the last moth we've had 5 episodes of either seizure or breathing difficulties, so they've now finally started her on anti-secretion meds on as 'as needed' basis, because in between she 'fecovers'. That just means she doesn't have any visible symptoms. She's following the same trajectory as her sister, who had a similar end-stage trajectory lasting 6 years. :eek:

    If your mother also has Lewey Body symptoms that will thow more into the mix.

    It is surprising how much life can throw at them and still they 'come through'. I have a personal belief that because the Dementia affects their brain in the area of emotions and can leave them with no anxiety, it almost 'insulates them' against anything physical thrown against them. I've said for a long while now my mother seems to have just 2 emotional states, 'I am' passivity or 'I hurt' with only furrows between the eyes to a good observer to spot.

    I wish you strength as you face this.
  5. Thania

    Thania Registered User

    Sep 4, 2017
    Hi Kevin

    Sorry to hear your wife got dementia sooo young :-(
    My mother in law is 84 in November.

    We are now starting understanding more about Dementia.
    The ups and downs was tired us. We didn't know what decisions to take.
    But we are getting used to .

    As I said my mother been living in her own until 19th August 2017, with 4 visits a day from carers and she had a couple of days in a day care centre too. My husband was visiting ( shopping , cleaning, etc) nearly everyday of the week and some days 2 or 3 times a day.

    She is now over 3 weeks in hospital. Last week on Thursday we visit with our 3 years old twins , she was bright , talking, eating, drinking, sitting , etc , wow , we thought she is ready for rehab and could start walking again!
    Friday was different story, nurses told my husband she had a bad day, her face went lopsided and she fainted. My husband staying with her for 4 hours. Nurses told him is not a stroke.

    Saturday , another day, and couldn't believe what nurses said : Your mum had a great day, eat all her food, porridge, toast, tea lunch mince and potatoes , apple crumble , etc and she is walking! , she walk to the toilet ( 3 bowel movements) wow!
    My husband ask her mum if she want to walk and walk holding his arm !
    Although she still with a catheter.

    Sunday , nurses said, your mum had a bad day , she didn't want to eat all day and doesn't want to move from bed !

    We are now used to the changes, good and bad days.
    We were thinking she maybe back to her home again but nurses told us, she will have good and bad days then less good days then only bad days.

    My husband is filling sometime this week SMART forms to move her a nursing home after all check in hospital are done
  6. Thania

    Thania Registered User

    Sep 4, 2017
    HI LemonJuice

    Your mum has Dementia for over 12 years , I guess she got this illness young ( 50s or 60s ?)

    My mother had a hearth monitor for 24 hours and everything was good, she has urine test and blood test and doctors said not any infections , kidneys , liver and hearth are good!

    She had suffer from hallucinations and delirium her first 2 weeks in hospital and they only change the ant depressives and she is fine now, talking non sense sometimes but nothing like before , the screaming, crying , the bad man, etc , not any more.

    The tremors still happening but not everyday.

    Talking with some friends and colleagues is amazing how many people got Dementia, they always know someone ( family or friend) who suffer of Dementia.

    Thank you for your reply , I think this could take a long time and we were all over the place , we didn't know what to do. Sometimes my husband want to move his mum to her home and look after her for her last weeks but now we know is not going to be weeks or even months , it could be years.

    My husband has been always looking after his mum, we didn't have holidays together for the last 3 years ( I have travelled myself with twins to visit family) and he been working part time to cope with keeping 2 houses and his mum in her home.

    Soon we will sell her house and she will move to a care or nursing home.
  7. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    You know in my age group I can honestly say I don't know of a single friend/ colleague. acquaintance who isn't watching this with one relative or another.

    No actually she was only 'officially diagnosed' 7 years ago, aged 82 though we'd been going to see the Dr. because she herself was worried since before 2004!
    She kept passing all the MMSE tests with flying colours, probably because it is vascular related , which affects the brain in different ways and because we'd seen this scenario several times before I just wasn't willing to 'see the signs'. She kept saying about how she was 'losing her mind' and I kept reassuring her that if she was, she wouldn't know it because it would seem 'normal' to her. But obviously she herself was worried about symptoms she'd spotted in her relatives and recognised all the signs.

    Considering she had her heart attack in her mid-40s, yes that's young for a woman, I believe the long-standing ischemia has caused the damage deep inside her brain for many, many years.

    Usually Vascular Dementia often leads to a heart attack or stroke, but because she radically changed her lifestyle, diet etc after hers, the Dr says in view of everything her heart is actually not 'that bad' and if it weren't for the dementia she could have a good QoL in between the crises. Plus of course the superb care at the NH to keep her going.
  8. Thania

    Thania Registered User

    Sep 4, 2017
    Hi Lemon

    Your mum 12 years with this illness , we are nearly 4 .
    Today she had another good day , she is walking , eating, etc Been with catheter for over 3 weeks, catheter is off from Today.

    A doctor ( geriatric) phoned today saying your mum is improving a lot. She will be discharge in next few days and going for rehab then she can back home!

    A different doctor (neurologist) told my husband last week your mum will never walk again.

    Wow! doctors, nurses , social workers, everybody says something different every week!
    I better just laugh :)
  9. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    You definitely need a sense of humour with this disease.;)
    You're fortunate that your mother is still able to function, so make the most of this time.
    Who will do the caring once she gets home? Is that you?
  10. Thania

    Thania Registered User

    Sep 4, 2017
    Hi Lemon

    My husband will look after his mum, I am working part time and my twins are in nursery the days I am working, during my days off I am looking after my 3 years old twins.

    She is doing very well, doctors said she is too good for going for intensive physiotherapy ( as she had before), she only need a gentle rehab in a nursing home.

    We are going to visit her tonight, we are taking our twins tonight too see gran, she doesn't want to be in bed during the day, she want to walk and talk, she doesn't have catheter , she use the toilet normal as before. Physically is very good , but mentally is "away with the fairies" . Last night told my husband that I was pregnant and she is worry I am loosing the baby. She told my husband that the lady in the next bed will be reported, the police is coming for her, and stories and stories she doesn't stop talking :)

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