1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    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.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Life turned upside down - so fast

Discussion in 'I care for a person with dementia' started by Cath59, May 4, 2015.

  1. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    #1 Cath59, May 4, 2015
    Last edited: May 4, 2015
    I miss my mum. This is just so hard. I've posted bits of her story, but need to do it again. If I start a thread just for her, I can update it - even if no one wants to read it, it may help me to put into words what has been happening.

    Only six months ago, she was absolutely fine. She may have struggled for the odd word (maybe it was worse than we realised), but few 85 year olds have perfect recall. She lived alone, hated being reliant on me for taxi services - she had lost her driving licence because of poor eyesight - and still spent time in her garden and with friends. At the end of November she had a bad cold which knocked her out physically. She seemed to recover in early December, but by Christmas she was getting upset that she was getting "muddled" over her Christmas card list and presents. In mid December my son had a potentially serious spinal injury. He's fine, but it certainly took our attention away from my mum. We had a lovely Christmas Day - all the family there, including my severely autistic brother and his favourite carer, all my kids and my two grandchildren. My mother was not "quite with us", but seemed happy and there seemed no reason to rush the doctors appointment planned for the new year.
    On Boxing Day, my brother was rushed to hospital with a massive stroke - a complete shock. Obviously all attention was on him. I spent time with him, though my children were careful to spend large parts of the day with their grandmother.
    We visited the gp in early January. He was concerned about her heart (she has AF), but was convinced there was nothing wrong with her memory. He ordered tests and a follow up appointment a week later. I was reassured enough to take a couple of days "off", with my kids keeping an eye on her, so that I could go to a family funeral. By the time we got to the follow up appointment, she had deteriorated so much that the gp came to the house and ordered her straight to hospital. After her heart was stabilised she was transferred to an "elderly" ward, where she became increasingly confused, hallucinating. Told by a social worker that she would be discharged home with four short care visits a day she became very frightened as she didn't think she should be on her own. She's self funding, so we found a place in a local care home. She was not happy (I don't think she would have been anywhere), but didn't feel she could be at home. Apart from being muddled nothing "worked" from microwave, television, radio to most importantly the telephone.
    She was in the care home only a few weeks before a UTI triggered fast AF again, and she was readmitted to hospital for a short stay. Again, she was much more confused, refusing to stay attached to the heart monitor and tearing canullas out (very sore after). She got back to the care home, and seemed to be settling. We signed her up as a permanent resident and she moved to a nicer room - then broke her hip. She was operated on, with full general anaesthetic, woke up confused and in pain. She wouldn't cooperate with the physios, and became unwell with fast AF and water retention. Eight days after the operation I was rung by the discharge nurse and told that she was very much better, was sitting in her chair, had been assessed by the care home and was on her way back there. They thought it best to discharge her while she was "well". The care home hadn't realised she would be back that day. They couldn't get a hospital bed until the next day so she wasn't comfortable (she also fell out of bed in the morning, though I don't think any harm was done).
    The evening of discharge she was complaining of her chest feeling tight, and her breathing was difficult. The care home called the GP in the morning, and she was sent straight back to hospital with heart failure, fluid on the lungs etc. Her heart was again stabilised on the short stay ward, but she was clearly unwell, and this time they transferred her to the "infection control ward" which is apparently routine for patients admitted from care homes. She was very confused and in a huge amount of pain. They did try to control the pain with morphine, but that put her out so much they had to stop it. She is apparently just too frail. The day she was transferred she was convinced I had signed her up for a trial to see how much pain she could take. She was begging me to stop it, no matter how much they were paying me. She was alternately offering me anything she could think of and threatening to cut me out of her will! The next two days she was on morphine, asleep, and unable to be aroused.
    The next day they had stopped the morphine. She was more conscious and talking nonstop - but almost all of it was unintelligible, though I did catch the words "torture room". I was told that she had developed a chest infection as well as a UTI which would be treated with intravenous antibiotics.Yesterday I visited with my eldest daughter - who she is very close to. Again she was drifting in and out of sleep, but although talking nonsense, at least the words were understandable. The downside of greater consciousness was that she was back to removing her canulla - no more intravenous drugs or fluids. The sister I spoke to said it wasn't a problem as she was now taking her meds orally, and drinking. Another nurse said she hadn't been eating and wasn't drinking enough. She had also refused her medication so they were going to try again later. She still needs those antibiotics, but if they can't do it intravenously and she won't take them orally what happens? I'll be off to see her later - we'll see how things have developed today.
    In the meantime, from a purely selfish point of view, my brother is now severely physically disabled. He finally moved from hospital to a nursing home last Wednesday. It's rather too far from my house, but it's been a long hard fight to get him into anything that might be remotely suitable for a 54 year old with severe learning disabilites, rather than a standard nursing home catering for the elderly. My mother devoted a large part of her life to him, and, although I have had to become far more involved as she became physically less able, it's something we've been doing "together". If nothing else I need her to talk everything through with. I have a good, supportive family, but they just don't have the history, relationship, and understanding of everything that has gone before.
    I really don't know if anyone is going to read through all this, but it helps to post. My mother has always been my support, and so much has changed so quickly that it's really difficult to come to terms with.
     
  2. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    Life changes so fast and we are just not prepared. Take care and keep posting, it does help.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    I`ve read through it Cath and my heart goes out to you.

    There is nothing anyone can do to make life easier for you but if it helps to write it down, keep posting. There is always someone here.
     
  4. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    #4 Spiro, May 4, 2015
    Last edited: May 4, 2015
    I've read through your post Cath59, and you have my utmost sympathy.

    My mother was living at home at the beginning of the year - she was quite literally, living well with dementia. This is no longer the case and she now needs to go into a home as she has deteriorated rapidly. I'm so glad that we had a lovely Christmas.

    Do have a look on the AS site to see whether there are any support groups in your area that you and your family could attend.
     
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    oh just read your post all I can do is give you a hugg
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,237
    Female
    Dundee
    Thinking of you and your family. What a difficult situation you have to cope with. I too hope you keep posting here as you will find support on TP.
     
  7. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Thank you everyone. I think I just needed to get it out. Sympathy does help! Spiro, I'm sorry for you as well. I think a sudden deterioration is something like a bereavement, it's just that it takes time to realise you've lost them, and, of course, there is still someone there that you want to love and care for with, hopefully, something still recognisable. There's a lovely Alzheimer's Society support worker here who was enormously helpful at the beginning and would be there for me if I needed her again. The only local support group meets on the last Wednesday of the month, which doesn't always work. I've made good use of this site - there's so much helpful advice here. It's always good to know you are not alone and I'm lost in admiration for the number of people doing full time caring. It really wasn't possible for me, but I can't help feeling a certain guilty relief that my mother needed to go straight from living independently to a care home.
     
  8. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    515
    Scotland
    I have read your posts Cath - I look after hubby 24/7 at home. It's good that you have Alzheimers Society support as that must be helpful. We do not have that in our area due, they say, to cut backs. Hope your family continue to rally round and support one another but it is so hard. (Hugs)
     
  9. opaline

    opaline Registered User

    Nov 13, 2014
    182
    I read through your post, too, may I suggest you speak to your GP and suggest that counselling may be helpful for you to cope? xx
     
  10. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    333
    rct
    Hello cathy59

    I have also read your post and its straight to the point and shows accurately the situations we carers of our parent and loved ones have to deal with on a daily basis. I am sorry your mum has herself had major health issues to deal with.

    Like you i have a supportive family..my daughter is great with my dad and my husband is...but sometimes they and the rest of the family just dont understand enough.

    People can be supportive but unless theyve looked after someone in this situation theres no way they could understand.

    Make sure you look after yourself and ..i just wanted to send you best wishes.

    Sent from my GT-I9505 using Talking Point mobile app
     
  11. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Thank you everyone. It really does help. Who needs counselling when you've got TP?
    I have good news and bad. The last couple of days my mum has seemed so much brighter. The pain is either gone or manageable. I don't think she has any idea where or when she is - which is difficult as she's always had some level of understanding before. She keeps trying to "turn" or put down small objects that she can see. Does anyone know anything about that?? Last night she kept coming back to insisting that I needed to make a decision about university (nearly 40 years out of date!), but seemed to be focusing on Edinburgh or Glasgow????? I have absolutely nothing against those excellent Scottish universities, but I really didn't consider them, and they haven't featured in my children's choices either. It's both bizarre and sad as, since she's been ill and spending more time "in the past" she's told me so often how much it meant to her that I went where I did. Now that seems to be gone.

    So, the good news is that she's smiling. The bad news, assuming her x-ray is clear (she somehow managed to fall out of bed - in spite of one side being against the wall, and there being bedrails), they want to discharge her - with the instruction that she should not be readmitted if her heart deteriorates again. They want her to be "managed in the community". The doctors are probably right that the repeated hospital admissions are not in her best interest, but it's hard to hear.

    I just want to add, after my flippant comment at the beginning, that I really don't think I'm going to fall apart, at least, until things stop being so hectic and I have time to think! I do come home every day to a (reasonably) calm house and my family. I really admire all those 24/7 carers who's threads I read. I know, from growing up with my brother, exactly what it is like to live with someone who is difficult to take anywhere, but cannot be left alone. If you add to that the shear weariness I feel after spending only 3 hours with my mother talking nonsense relentlessly and expecting answers I think I have just a shadow of understanding of what those carers do. What I am going through is very, very hard, but I really don't know how anyone manages that for any length of time and remains sane!
     
  12. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    So very sorry to hear your sad news Cath.

    Im glad you can at least go home to a peaceful house.

    Be sure to look after you.
     
  13. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    #13 Cath59, May 6, 2015
    Last edited: May 6, 2015
    Thank you Dottyd. Let's see what today brings. We don't yet have the results of her x-ray, so don't know if they will try to discharge my mum today. I also don't know if the care home will have her back. They do do end of life care, with the help of district nurses, but they are not a nursing home. It will really depend how many highly dependent residents they have at the moment, and mobility may be an issue. I had a good chat with them yesterday. The best outcome would be for her to return there, but the worst would be for her to go there, and then have to be moved quickly. After the last experience, I don't trust the hospital to be as informative as they should (I did have a moan to the consultant as well!)

    So, on with the day! I've just kicked youngest out of the door on the way to school. AS exams are imminent. Next stop my mum's house to meet the electrician. We're about to pay for a new kitchen. We're going to rent it to my second daughter and her family (reduced rent - hope that's legal, but my mum isn't going to run out of money). OH thinks we should have a proper tenancy. The gas hob would never pass the gas safety inspection. It's in imperial measurements, so can't be replaced without replacing the worktops, and it's somehow escalated into a whole new (budget) kitchen. I'm sure it would more than pay for itself when we come to sell, but I still haven't quite got used to the idea that I'm responsible for looking after her house and money!

    Next, off to visit my brother in his new nursing home. I've only managed to get there once, when he moved in a week ago. It's over an hour's drive and Wednesday is really the only day I can fit in visiting him and my mum - even though I'd rather stay closer to her.

    I'll just have to try to forget that the house is a tip, and I desperately need to shop - not to mention a trip to the bank for 50ps! Apparently silver is lucky (my mother) and she always gives her grandchildren 50p per exam paper. My youngest starts her AS exams on Monday and my son his second year university ones the same day. Now is not the time to abandon the tradition. Monday will be a big day. Two start exams, and the eldest starts a new, much wanted job. It involves a long commute, she's not great with stress, is close to her grandmother and is struggling to control IBS. Not sure how that will work! Did I mention it's also my birthday? Just hope my mum doesn't make it more complicated. A nice, happy visit to her in the care home would be perfect. How does anyone find time for a job?
     
  14. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Ok. Just heard from the hospital. The x-ray was not good. No discharge, as they're operating again this afternoon.
     
  15. 2jays

    2jays Registered User

    Jun 4, 2010
    11,590
    West Midlands
    ImageUploadedByTalking Point1430901854.909650.jpg

    Happy Birthday :)




    Sent from my iPhone using Talking Point
     
  16. 2jays

    2jays Registered User

    Jun 4, 2010
    11,590
    West Midlands
    You have so much on your plate haven't you hope everything goes as ok as it can today xxxxx


    Sent from my iPhone using Talking Point
     
  17. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Visited my brother, and he looked so much happier than he did in hospital. He smiled at me:) The physios got him in his wheelchair, and when positioned so that he could see out of a window he beamed - all be it a lopsided beam these days. This really isn't the place for that news, but I really need to tell my mum. Even a couple of weeks ago it would have been so important. I thought I'd post here instead.
     
  18. 2jays

    2jays Registered User

    Jun 4, 2010
    11,590
    West Midlands
    Lopsided beam sounds good to me :)

    Hope you spoiling yourself a little bit today with something you consider yummy :D

    xx


    Sent from my iPhone using Talking Point
     
  19. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Lopsided because of stroke, so sad, but beam after four months looking incredibly fed up in hospital is unbelievably wonderful. Earlier post was badly phrased. My birthday is on Monday along with first day of exams for offspring nos 3&5 and first day of new job for offspring no1. As I said, just need to be able to share it all with my mum. Still waiting for news of second hip op this afternoon, so slightly on edge!
     
  20. Muff

    Muff Registered User

    Apr 19, 2015
    8
    thinking of you

    I have read your story and I am thinking of you. You have been though tough times and its still only six months ago. When you lose the one who supports you you feel so lost when they are not here. It is now 15 months since I lost my Mum and we too supported each other, I still have days that I want to pick up the phone to tell her something or ask advice. This last year we have lost 7 relatives and I have been supporting my Dad in care. Heartbreaking by its self. All I can say is gets a little easier with time but Mums will always be missed. Take care.
     

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