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Dad rushed to hospital, extent of mum's dementia now apparent, desperate for help

Discussion in 'Middle - later stages of dementia' started by Scotsfloat, Dec 28, 2015.

  1. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    I am new to this site and would welcome any help as I am completely overwhelmed and don't know what to.
    I have had concerns for well over 2 years regarding my mother's dementia symptoms. I have tried to talk to my dad many, many times about getting an assessment so we can all know what is happening so we are better placed to help mum as and when needed. My parents have decided they are quite able to manage without any help and I have been torn between respecting their wishes and trying to do something about it. This has made quite ill. I A crisis has now hit and we are in the nightmare situation I have been so desperately trying to avoid. My dad was rushed into hospital a week ago with a serious infection and is very ill and we don't know when/if he will come home. This has exacerbated her condition and we are juggling staying with her 24/7 as she wanders round the house looking for my dad. She obviously has separation anxiety as she cannot function without him. It is heartwrenching to watch and we feel helpless. Someone has suggested we see her GP and arrange urgent respite care as we need headspace to sort out what is going on with my dad and the minefield of sorting out care for him should he come out as well as trying to find out if bills at their house have been paid etc. I am feeling overwhelmed as if I can't breathe and don't know where to start. Sorry to ramble but wanted to know if anyone knew about urgent respite care and whether it would be available or will the GP think I am over reacting? Mum also gets up in the middle of the night, thinking its morning and goes to the front door as wants to go out. I don't feel I can keep her safe. She is 86 and my dad is 88. Thank you.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    9,338
    Female
    South coast
    I think urgent respite is absolutely the right way to go.
    Phone GP or Adult (Social) Services and stress that it is urgent and that you cannot cope with the situation. Tell them that she is vulnerable and that you cannot keep her safe.
    You are not over-reacting.
     
  3. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    Agree with Canary on what to do next, tomorrow. You do not need another crisis and if no one can stay with your mother full time, then short term respite will give you the time to deal with the important things to organise
     
  4. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    Thank you for your response. I have read so many posts where people have been managing distressing situations for many years. I am trying to suppress the guilt, but at the same time feel angry and frustrated as have being trying so hard to be involved in what has been going on. My dad phoned a couple of weeks ago in the night and begged for help as my mum had woken up and believed it was morning and was insisting on going shopping. It was 11.30pm. I calmed the situation over the phone and the next day insisted we got help but was told not to interfere. Obviously, my dad has been doing a sterling job and it's as if together they make one functional person. It must be so frightening for them. Do you think if she was in respite care it could make her condition worse? Her memory lasts about 3 seconds at the moment and she can literally repeat a question indefinitely - I worry about how she might be responded to as she is exhausting, but I guess the care workers must be used to it. I don't even feel I have had time to process the fact that my dad could be near death. I have made an appointment at my mother's GP tomorrow and wondered if it was best I just went in on my own or would the doctor need to see her at the same time?
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Agree with both - phone Adult Social Services duty desk in the morning and tell them your mum is vulnerable and at risk of hurting herself and you don't feel able to cope with this and your Dads illness and you need urgent respite.
    You definitely need to know your mum s safe and then you can concentrate on your Dad and get a care package set up and find out what Dad wants too but now is the time to get extra care into the home whilst he is recovering at home.
     
  6. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    Thank you for responding. Yes, I'm afraid there is no one that can stay with her full time; my brother and I work full time and he lives 200 miles away and we just cannot afford not to work as have mortgages etc to pay. I have a sister living locally, but she suffers with severe mental health issues and is already showing signs of deterioration due to the stress of our situation and I want to protect her from this as much as possible or she is likely to be back on a psychiatric ward and then will need extra care from me also.
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,491
    Female
    London
    #7 Beate, Dec 28, 2015
    Last edited: Dec 29, 2015
    To be fair, what should have happened is that your dad registered himself with social services as a carer on a kind of emergency card scheme so that the minute he went to hospital they would have been contacted and emergency respite put in place. You can't just suddenly take the main carer away and expect others to cope just as well. So no, you're not overreacting and you have to call up adult social services tomorrow first thing, explain the situation and that your mum is a vulnerable adult at risk for whom they have duty of care.

    This could be the push needed to get a needs assessment for Mum, plus Dad will need a care package too as he shouldn't be expected to care for someone while recuperating, whether he thinks he can or not.
     
  8. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    You will need to go with your Mum when you see the Dr or he may not speak to you. I would make a bullet point short list of what you need to get over to the Dr. If your Mum is taking in any of what you say then pass the list to the Dr.

    Tell him she is a vulnerable adult which is a red flag phrase they have to respond to.
     
  9. Again and Again

    Again and Again Registered User

    Dec 22, 2015
    4

    This is absolutely the right thing to do, in this situation help is organised very quickly.
    Stay strong and don't carry the whole weight on your shoulders.
     
  10. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I agree with all that has been said. Respite care is essential to give you space to sort out things without the worry of your mum not being safe. Hind sight is a wonderful thing !!!
     
  11. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    Thank you so much for all your responses, I'm sorry I haven't responded earlier but have had a very exhausting day. Following your advice I phoned my mum's GP first thing this morning and he was so lovely. He has known my parents for many years and was very understanding. He made a home visit and carried out a test and could instantly see her memory had massively declined and was severely impaired. To cut a long story short, he set the wheels in motion and we have had various professionals out to the house. As you have suggested, she is completely off radar and they haven't been claiming any benefits they are entitled to. Mum was deemed not to have capacity to make decisions and we have a social services social worker visiting in the morning to carry out a final assessment and hopefully we can get her into an emergency care home so we can have headspace to weigh up a care plan moving forward. Hopefully we can assess my Dad's situation as well. It's the first step, but we're finally on the right track. Thanks so much for all your help and I'm sure I will be back for much more!!!
     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Well done, that is a lot of very big achievements in one day - you must be exhausted. Look forward to an updatae when you have time x
     
  13. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    Hi,
    The social worker rang at about 9.30am and was lovely; I'd had another sleepless night worrying they wouldn't be able to help as well as listening out for my mum getting up in the night. She rang around for an emergency bed and a little later a care home called and said they were sorting out a room for mum. It was such a relief, but then had the task of packing her bag and putting in all her favourite photographs and familiar items and then finding a reason why we needed to go out. My brother and sister came too and we tried to make the journey as normal as possible. It was such a bleak day; dark, rainy and very windy which reflected well the circumstances we found ourselves in.
    We put everything out in her room to make it cosy and familiar and I left her a big note that explained everything that was going on. Trying to leave was a different matter and I think will give me nightmares for the rest of my life; I explained things again to her but she wanted to come too. She was gripping the door frame with all her might and the reality of the situation hit me like a ton of bricks. The care home said she settled down but was looking for her 'friends' meaning me and my brother and sister, but they showed her my note and then she was OK. There is a woman there on a similar 'level' and they have been chatting and watching the television together, although she put her coat on and stood by the door this morning. I got back to my own house last night and my mind was working overtime about what has happened. However, I actually had the first proper nights sleep since this started, which I desperately needed as need a (relatively) clear head to start sorting things out. I will go and see my dad in hospital tomorrow to catch up on his side of things; Social services have now been alerted to his situation too, so the ball is rolling there as well. I just need to try and co-ordinate things somehow. I have made a lot of calls today but I am going to try and relax this afternoon and get my strength back. Just realised its New Year's Eve, so all the very best to all of you xxx
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Goodness you have had a very busy and very difficult time, so glad you managed to catch up on some sleep.

    It is wonderful news that your mum has found a friend and someone she can relate to - that will really help with her settling down. My guess is that she was very frightened when she was being left - it is hard to imagine a world without reference points and when immediate family or connections leave it is really scary. She will need lots of reassurance and you need lots of sleep!!
    Thanks for letting us know xxxxxxxx
     
  15. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    I don't know your fathers situation but if he is able to ask about your mum, I would suggest being vague with your answer. Eg how's mum? Oh she's doing okay , being well looked after and she's coping better than we thought. I wouldn't answer with oh she's in a home and go into details. Just keep saying everything's fine Dad you concentrate on you we can cope with Mum.

    I know my Dad would lie to get out before he was ready to get back to my Mum and then he would be ill again. So be economical with the truth until he is stronger maybe?

    Good luck and keep us posted.
     
  16. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    I was suitably vague and upbeat about my mum's respite care when I visited my dad in hospital. I also made sure the hospital knew he would make out he was more independent than he actually is and they said they had already noticed that. He has had a bad infection and didn't seek appropriate help because it would have exposed the extent of my mum's dementia, which he had valiantly being trying to manage. By the time the ambulance arrived he was delirious and now has no recollection of events. Though still in hospital, my dad managed a shower with help and dressed in outdoor clothes. He has even been writing his own care plan for when he comes out; 1. Need stairlift 2. Can empty own catheter etc! This is heartening, but I'm taking each day at a time. I can't stop thinking about my mum in the respite care home though. Apparently this morning she had packed her bags and was by the front door saying she was being picked up shortly to go home. Whilst writing this, the respite care home have just called and said my mum was refusing to leave another resident's room and trying to open all her drawers. They said they had tried everything and could I talk to her and try and calm the situation. She didn't even sound like mum, she was very confused and very angry. I just talked normally to her about everyday stuff we used to talk about and it seemed to distract her a bit. I said how well dad was doing and she said she was so relieved and had spent 'hours' with him. She then went off on another tangent and then said she had to rush off. I am feeling so sick as know she is there to keep her safe, but worried it might be causing a big decline in her condition. I just can't see how she would ever be able to live at home with my dad again. I was wondering about taking her to the hospital to see my dad and would welcome any opinions about this - could it help or could it make her more anxious and then not want to go into respite? Thank you.
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Aww so sorry
    What you could do is take some photos of your dad and take them when you go to see your mum and say that when the weather is a bit better you will take her to see him but meanwhile you will bring her photos each time to show her that he is looking well.
    Even though she can't verbalise it she must be frantic - her soulmate is missing and she doesn't know where he is and even if you tell her she doesn't remember so as far as she is concerned he's just not there. Make sure that you get some hospital type things in the photo so that she can see it.

    it is just worth asking them to check for UTI but i suspect it is just v traumatic for her at the moment x
     
  18. Scotsfloat

    Scotsfloat Registered User

    Dec 28, 2015
    49
    Hi, I pinned up in her room a photo of her standing next to my dad in the hospital. Yesterday, I took a picture of my dad, myself and my sister during a visit with him, next to his bed. He was looking better with outdoor clothes on. I will get that printed off asap so I can take it to her. Thank you for that, it makes sense and even if she forgets it's something she can refer to. I keep writing big notes that explain the situation and the care home staff have been directing her to read them when she gets agitated and it really calms her down. The trouble is, she keeps folding them up and putting them away and then no-one can find them. Also, I was advised not to visit her for a few days so as not to unsettle her, but talk to her on the phone instead. They left it up to me, but don't know what would be best as not sure I could cope with visiting and then her getting upset and crying and trying to come with me when I left as it heartbreaking. She is being referred to a psycho geriatric doctor for a full assessment and diagnosis but scarily the care home said this could take 3 months. She can only stay where she is for 1-2 weeks, so starting to panic about what I need to do. I just want to help her the best I can.
     
  19. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    I would say to Mum that Dad needs to rest at the minute but once he's better and the doctor says it ok you will get them together. How they get together can be decided later on depending on circumstances.

    I personally wouldn't take her to visit Dad as she may upset Dad, and other patients too and think about how you are going to get her back in to the place she's staying in if she's waiting at the door already? Promise to keep her posted etc but delay any visits for now to see Dad.

    Also if she went to see him would she let the cat out the bag about where she is, and how she's not happy there? Put dad first just for now I think.
     
  20. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    No I wouldn't take her to visit either but I wouldn't stop visiting - she needs an anchor and there may be times before the psych sees her when you are the only person who can calm her so even if you pop in you will be keeping that bond (at the moment her world is upside down so she really does need someone stable) - take something to do - perhaps some really nice hand cream and give her a hand massage or an old photo album or a card game. When you go leave your coat and things in the car or near the exit so that when you leave you can say, 'just popping to the loo' (my bet is she used to do that to you when she took you to nursery lol), alert the carers so that they can fill the gap, and pop off quickly - that way you miss the trauma and hopefully she will stay calm (ish) for a a bit!

    It is so difficult when people have memory loss, they just know there is something wrong but they can't remember what.

    Keep your chin up and plod along one day at a time xxxxxxxxxxxxxxxxxxxxxxxxxx
     

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