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    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

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Is this late stage? Worried about mum

Discussion in 'Middle - later stages of dementia' started by Dino, Sep 14, 2017.

  1. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Mum is in a nursing home, she fell and broke her hip last month and recently had a seizure and was taken to hospital, she's 85.

    I spoke with the Dr at the hospital who said they were doing tests but hoped to have her back to the nursing home today, just called them and she is back but the hospital did not send them any discharge papers?

    Nurses are having to feed mum and she is sometimes refusing. She's in bed because of her hip.

    I live in the States and am frantic.

    I have asked the nursing home to contact me immediately anytime day or night.

    I just don't know what to do.

    Has anyone experienced these same symtoms with their loved one? Can this stage last a long time?

    I know though nobody can really say.

    If I go to England right now I won't be able to afford to go again until next year as I don't have any family left to stay with so it gets extremely expensive.

    I am torn, I asked the Dr should I come right now and he said he didn't think so but the hospital is not the right place for mum, she needs to be at the home.

    I'm so afraid I'm going to get a call that mum has gone...and I'm not there...

    The manager at the home is truly wonderful and keeps me informed.

    What to do??
     
  2. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Gosh, what a dilemma :(
    I assume she is living in an expensive part of UK. Is it just the accommodation that stops you coming? Perhaps you could say roughly which part of UK she is in and maybe people on here will know some cheap options.
     
  3. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thanks canary.

    Mum is in a nursing home in Urmston/Davyhulme, Manchester.

    Yes, it is the accommodation. Last time I was there I stayed in a hotel for just over 100 pounds per night.

    Looking on the web for alternatives but not familiar with anything like accommodations in England so no idea what they have.

    Lived in the States for 37 years.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Thank you Dino. I dont know that area at all, but Im sure someone will.
     
  5. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    Dino,

    Have a look at the Spare Room website. Some people let rooms by the night. It will be cheaper than a hotel.

    Best of luck.
     
  6. mab

    mab Registered User

    Mar 6, 2010
    196
    Surrey
    Dino, appreciate your worry. This is a very difficult time for you.
    It may be a long shot these days, but when my mother was in a nursing home in Whalley Range, only a couple of miles from Urmston, they kept rooms available for visiting relatives. I used them myself on more than one occasion as I lived overseas at that time. Worth asking. All the best x
     
  7. Julia B

    Julia B Registered User

    Apr 13, 2015
    80
    Dino try airbnb, can work out so much cheaper and can be nearer to your mum too.
     
  8. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    #8 LadyA, Sep 15, 2017
    Last edited: Sep 15, 2017
    Dino, some of my husband's family faced the same dilemma. (They are all in the US) They couldn't afford to come here to visit him and come back for his funeral when he died. Some felt they would rather come and visit while he was still alive. Of course, that situation was different, in that I was here to take care of things after he had died, and organise the funeral etc.

    I suppose, planning a trip rather than a "you need to come now" trip does have the advantage that getting a ticket at very short notice can be extremely expensive. One of my husband's grandchildren desperately wanted to be here for his funeral but the last minute ticket she was quoted was around $4,000! :eek:

    As for accommodation, maybe ask the nursing home manager if she can recommend a B&B or small guesthouse locally?

    My other thought, Dino, is that you could be there at the nursing home You could sit there for hours, days, with your mum. And you could slip out to go to the loo, and your mum could go while you are out. It often happens that way. As if the person doesn't want to die in front of their family. So, either way, I wouldn't concentrate too much on "being there" when your mum dies. You have done all you can for her, and more. You have ensured her safety and her comfort and made sure she got the best of care in her final days. You couldn't have done more even if you had been there every day.
     
  9. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    442
    If you are OK driving in UK you could look at hiring a small campervan for under £400 a week, plus campsite fees £20-25 a night. You would not need a second car hire and could save money on eating out, and many sites are close to bus stops or railway stations.
     
  10. Tessi

    Tessi Registered User

    Aug 9, 2014
    26


    My mum was recently in a nursing home for two weeks respite. At the end of the second week she fell and broke her hip. She's now in hospital after an operation to repair the fracture. For the first four/five days she refused to eat and would barely open her mouth. One of the nurses said it's probably delirium with the shock of what's happened and all the changes, especially with dementia in the mix, and that it's very common after a hip fracture in the elderly. Nine days on and she is still eating very little and is on fortified milk shakes. Otherwise she's ok but much more confused than a few weeks ago.
     
  11. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Been thinking how to respond for a while now.

    I think the advice to visit as a 'planned trip' to spend some quality time with your mother is a really good idea.

    As it's now 3 days past her return to the NH and she's still here that' end-stage' may well even be years off.

    I remember reading somewhere that many sufferers spend around 40% of their time in that severe 'end-stage'. My mother is certainly nearing that after 12-13 years since becoming symptomatic, 7 years past a final diagnosis and then 'end-stage' for over 3 years now. She's been at stage 7c/d for the past 4 years now and even now I've been informed she still may not be in the last 6 months of her life, because of her health being able to fight off emergency after emergency over the years.

    If it is planned, you can get better deals on flights, generally the further ahead you can book the better the reduction and then a bit of research means you can find out not-so-expensive places to stay.

    You can then make the most of your visit, make memories together and say all you goodbyes, whilst she can still 'hear' and respond hopefully.
     
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
  13. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    653
    Hi Dino. I agree with lemonjuice that it's better to come now. My husband's aunt had a stroke and we thought she didn't have long. Her son, who was in poor health himself, came from Australia to see her. She rallied a little, was moved to a care home and died about a year later. My husband organised the care home, then the funeral and shipping of some mementoes to Australia. His cousin was by then too ill to travel and it was no longer necessary - he'd already said his goodbyes.
     
  14. Dino

    Dino Registered User

    Aug 7, 2011
    76
    This is a great idea, unfortunately none of us would be ok driving in England and can only drive an automatic which are a lot more expensive over there.

    We did manage to find an airbandb close to mum.
     
  15. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you so much for this info.

    Will have to use public transport as none of us would be safe driving on UK roads.
     
  16. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you, we have managed to find an airb&b for 2 weeks near mum.

    I will ask the nursing home though about any rooms.
     
  17. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thanks Julia,
    I had never heard of airb&b but looked it up and found a nice place near mum!
     
  18. Julia B

    Julia B Registered User

    Apr 13, 2015
    80
    oh I am glad , hope it goes as well as poss x
     
  19. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you so much for your advice.
    I've thought so much about what you've written and decided to go and see mum now.

    I feel it is the best thing for us to see mum and spend time with her. If I leave it I may get a phone call and not make it in time.

    Unbelievably my daughter found plane tickets on American Airlines from Denver to Manchester in 2 weeks for only $757 round trip so it's all booked and we found a nice airb&b near mum.

    There were only 4 seats left on the plane so they must be trying to fill the plane up.

    After asking for more detailed info on mum, the manager emailed to say mum no longer communicates or understands anything and is fed by staff. She is in bed at all times and they use a hoist for the bathroom.

    Upsetting indeed to hear but I will get to see my mum very soon.

    Your post really helped me to decide the best thing to do and I feel peace knowing it's the right decision.

    Thank you again so much and I hope you are okay.
     
  20. Dino

    Dino Registered User

    Aug 7, 2011
    76
    Thank you, managed to find an airb&b ( which I had never heard of) will keep the site you mentioned in mind too.
     

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