Mum so much worse after 6 months in care home

Discussion in 'I care for a person with dementia' started by SarahL, Jun 9, 2015.

  1. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Hello

    My Mum seems so much worse since she's been in the CH (she went in six months ago). I don't know if it's the progression of Alzheimer's or a change of medication. Could certain meds dramatically increase progression? I'm finding it so hard to adjust. Initially, she seemed better in the CH, although she's always asked to go home but she became nicer to me after all the years of abuse (although the anger directed at me never goes completely!) and she was fun in the CH at first, entertaining all the staff with funny accents, almost manic at times. This is contrasted with very low moods, wishing she was dead, but she has always been like that. However last week she talked nonsense and was completely confused and acting differently to any time before. Not helped by a link worker who, in my opinion, shouted at Mum when doing a (completely futile) memory test and then said Mum had advanced dementia? How can she tell after 15 minutes???? when she's never met her before and she's on new meds.

    I am wondering if (a) I just did not notice how bad things had got before she was sectioned (b) if the meds have changed things (c) the illness has progressed speedily and (d) if she'd stayed at home would she have been better off. I just can't comprehend this almost overnight progression. Has anyone heard of this? She's more paranoid than ever too and I wonder if that's the meds. All ifs and buts.....

    One more thing is my sister rings the CH and asks to speak to Mum. Sister has no concept of the anxieties and agitation of the disease having never had any input at all apart from one visit a year. Her calls apparently really upset my Mum (the CH told me) and yet my sister insists on speaking to her as though she's still the same person. I feel very upset about her lack of awareness upsetting mum but also trying to be involved with the CH when she did nothing in the past, not even a bag of shopping or one appointment to help Mum or me. I need to let the anger go, but it's hard, esp as she emailed me 6 weeks after mum went into the CH telling me to rent the house and 'manage' mum's possessions, and that I must act in her best interests! Sorry to offload on here. I feel so sad and am probably sort of adjusting to 'losing' Mum.
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    I'm so sorry

    Sarah, I don't know that I have any advice or anything helpful to say, but I see you are online and know it must be late late in the UK (I'm rubbish at remembering the time difference but will go look it up) and just thought maybe you could use a friendly word.

    I'll see if I can write you a better response but I know it's hard, I know you and your mum don't have the best history and that makes so many things so difficult, and I know it's just...awful.

    So here's a virtual hug from the other side of the Atlantic. ((Sarah))

    I'm so sorry...
     
  3. Karjo

    Karjo Registered User

    Jan 11, 2012
    481
    #3 Karjo, Jun 9, 2015
    Last edited: Jun 9, 2015
    My experience of meds for Mum was not great. Do you know what your Mum is being given? Sometimes they are given very powerful medication, and certainly in my Mums case they maybe seemed to work for a short while but her moods still remained exceedingly erratic , and I often felt she fought against the effects of the meds as well as the dementia. In fact she voiced her opinion saying "what's happening to my head and they are giving me something" often refused to take meds or spat them out .It was difficult to monitor what she was given or taking, no member of staff was going to chase her around trying to finish a spat out pill that had been on the floor! I certainly could not find out what she was prescribed most of the time let alone if she actually took it. The long term side effects she has suffered though in my opinion were not worth the benefit.(and as I say she probably only took half of what was presribed, nobody knows)
    The problem here of course is we as a society just don't know what to do with these people. I have seen Mum flip from being a charming joking little lady to a sudden awareness and change into someone verging on hysterical, full of paranoia, violence and misery. The money is simply not there to be providing one to one care for every tortured soul. Mum too was so aware of being deprived of her liberty, the early days were spent by her pleading, arguing, banging on doors, smashing windows, escaping,making tools ( with anything she could find, she remained imaginative) writing pleas to anyone passing the window to help her escape, she was being held a prisoner. Really she was just trying to run from herself. A cure needs to be found for this because it is just too hard iand expensive to deal with. It can break us emotionally and financially, and that is as a country, not just individually.
    So yes to your question, meds can make dementia worse but you will probably never know, and it seems to be the only option other than individualised care and a complete and radical approach which we are told is too expensive.
    As to sister I would say yes, get down and sort the rental herself. you are busy with your Mum. She is still a lot of work even though she is in care. Sectioned people are amongst the most vulnerable in society, they need more care than anyone else in society and care takes time.Tell her to photograph everything, make inventories etc etc. maybe you could even pay someone to help her from your Mums funds if you don't trust her with Mums things. (Though You would have to make sure this is in your Mums best interests but if sister is planning on running off witht he family silver it probably is) i suppose what it needs is for your sister to come up with a plan of action that you can then criticise rather than the other way round. if she is the sort of sister though that likes to leave you a long list of what you should be doing I would ignore her, though its probably not in your Mums interests to have a property left empty.
    BTW has your Mum been checked for UTI's ? Any sort of infection has a massive effect on my Mum, unbelievable in fact.
     
  4. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    #4 SarahL, Jun 9, 2015
    Last edited: Jun 9, 2015
    Thanks Karjo and Amy. Karjo I agree Mum just wants to run from herself and the disease I think. She keeps saying she wants to be dead and it is so depressing seeing her like that. I actually feel very depressed myself, my depression's been on and off for years with all of this and I'm very down at the moment, which is strange since i'm not doing all the work now or receiving millions of calls and bad messages. I still wonder if Mum would have been different if she'd stayed at home, again i'll never know and it's completely futile. One thing I do know is that I would probably have been rocking madly somewhere in a home myself if it had carried on, so I have to console myself with that. It's such a horrible disease and to find a cure like you say would solve so many burdens on the person, carer and society. sorry to hear your mum was so desperate after she went in to the CH, must have been awful esp with the spitting of meds, her symptoms sound so like my mum. mum's approach to her meds varies daily btw and she's very paranoid still. she's on sodium valproate btw, for mood stabilising. what's your mum on? Was your mum paranoid and stubborn before the disease? Do you have good and bad days? I don't know if mum has an infection but I don't think so. SOrry for all the questions and bad typing, i'm a bit tired.x
     
  5. Karjo

    Karjo Registered User

    Jan 11, 2012
    481
    Yes mum has always been paranoid and stubborn but has a few good qualities as well. She was on sodium valproate amongst a cocktails of other stuff over the years. She is now only on pregabalin as an experiment. not sure its doing any good though, hopefully so butnthey can increase the dose. She was in bed with a headache today though and pretty agitated , up and down all night and I suspect maybe a UTI. Fingers crossed I am wrong. There really is no peace with it all is there.
     
  6. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    I know, no peace at all. Even though I've seen so much I think I'm just so naive with it and keep feeling shocked every time a new situation arises. Being on here helps. Your Mum sounds like mine, who can also be very funny and witty. Please can I ask how long your Mum has had a diagnosis for and how long she's been in a care home? My Mum was officially diagnosed three years ago but I had been unwittingly dealing with all sorts of things prior to the diagnosis knowing something wasn't right but as I hadn't grown up with her, felt confused a lot of the time as she could be volatile. I think she's had mental health issues all her life , undiagnosed, which are now combined with the Alz. So sad. x
     
  7. Karjo

    Karjo Registered User

    Jan 11, 2012
    481
    mum has always been volatile. She is now 84. My dad died in 2004 and amongst his dying words were you will never know now much I have had to do, look after her. And get the power tools out of the house!
    Things were up and down after that but i never dreamt it was alzheimers, always considered her far too clever.how wrong was I. By 2008 things were getting out of control and I got her to the memory clinic. By 2009 she was diagnosed with mild cognitive impairment. by 2012 she was still mild cognitive impairment, could pass the tests at 28 out of 30 but thats because she is clever. it was a pretty awful time. by early 2012 she was sectioned and suddenly seemed to have severe alzheimers. She has been in and out of care and hospitals ever since, one minute moderate and the next minute end of life care! No real pattern but its been a long haul.
     
  8. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Hi SarahL,

    So sorry to read your story, ours is exactly the same. My mum has been in care now for six months and I beat myself up on a daily basis wondering if we did the right thing. We had to move her into to care when my sister and I could no longer keep up the hours as carers and working too.

    We hoped she would settle in the home after a time but she has zero memory so everyday is like groundhog day. One day she is happy (ish) and the next she is vile beyond belief. She says the most terrible things to us. We come home and cry, and this is becoming more frequent.

    My mom is on quite a lot of meds, sertraline, lorazepam and rispiridone to control her erratic behaviour but they don't do anything really.

    I was watching the programme Dementiaville last week (it is on another 2 times), they did amazing coping strategies with them and I am trying to put this into practice.

    All I can say is you are not alone, I am not much help I know, but if coming on here helps you to get it off your chest then that is one step further. It helps me.

    Take care
     
  9. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Sounds like a terribly long haul. Nightmare isn't it. It took ages for you to get a diagnosis which is something I'm writing about at the moment for a university paper. It was the same with me too. Support and diagnosis needs specialist intervention, not just 10 or 15 minute visits. Early diagnosis means interventions being put into place sooner and, under the new Care Act 2014, support for carers as well as the person with dementia. Help should be available before crisis point. Much of my depression has been caused by insufficient healthcare professionals and not enough specialised knowledge. Sorry to hear about your mum's erratic treatment, good luck and keep in touch.
     
  10. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Thanks Patricia Alice and sorry to hear about the same situation with your Mum. Isn't it just awful all round for everyone involved. It's interesting your Mum's been on so many meds. My Mum has been on risperidone too but they took her off that for sodium valproate, since when her Alz seems to have progressed at a ridiculously rapid speed. I just feel totally bewildered some days. I have recorded Dementiaville and will watch it, thanks for reminding me. Keep strong and thanks foryour support too. x
     
  11. CHEZA27

    CHEZA27 Registered User

    Jan 8, 2015
    29
    When my brother and I had to place mum Into a CH it was awful but we couldn't cope at home. We defo saw a very quick progression in mum, she's really aggressive,agitated threatens to kill herself and bangs on windows and doors to try and get out. It's soul destroying because I hate seeing her so upset and sad,when I ask her to tell me where home is she can't do it and just starts trying to hit me. She frequently refuses medication and spits it out all the time so I'm convinced that she's not really getting what she needs. I do believe that mum being in the CH has contributed to the decline as there are residents that are much worse than my mum, so some behaviours are learnt but you can't help that.

    I would love to tell you it gets easier, it doesn't I think I just have to push my feelings away when I go to see mum and keep thinking that I'm always doing my best and that's what she would want.

    I hope it starts to get better for you, always remember that there are lots if us in the same boat so your never alone although at times you may think you are.
    TP is my life saver <3

    Cheryl xx
     
  12. Isabella

    Isabella Registered User

    Jan 4, 2014
    103
    Just wanted to share that despite specialist intervention, my mum was misdiagnosed with psychotic episode and 'agitated depression' (even MIND couldn;t tell me what that was supposed to be!) by a psychiatrist. I've never understood how they could get it so wrong when her symptoms were textbook dementia. As a society sadly I think we've got a very long way to go to giving this disease the attention it so desperately needs.
     
  13. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    My Mum also became worse once placed into care. I have blamed myself ever since and constantly think about bringing her home again (she lived with us) - but then I look at her very bad state and wonder how on earth I could manage her.
    I recall Mum's GP saying to me that when I did place her into care that I would see the true level of her dementia, which sometimes gives me comfort but then the next moment I am back to wondering how I did such a thing, and that I caused it all.
    My own Mum has been in emi nursing care but never settled from day one. Could never really understand this because most of the residents were setlled, in their own way, and only an occasional resident would be slightly like Mum at times. She never did fit the entire picture of Alzheimer's, which has only heightened my guilt as things got worse as I thought all sorts, including wrong diagnosis. She is now in assessment unit.
    Just wanted you to know that along with all the other people who have replied I can see so many similarities between us all, and it is just horrible. Wish I could help us all.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,715
    Female
    South coast
    Lulu and everyone else on here - PLEASE PLEASE stop beating yourselves up and feeling guilty because your loved ones have deteriorated. Dementia is a progressive disease (as Im sure you all know), but every pathway is different.
    You have all been managing under extremely difficult conditions and I take my hat off to you all but, try as you might, it is too much for one person to do. Their needs have outgrown your abilities. There is no shame in that.
    This is NOT your fault and you have NOT done anything to make it worse. Dont listen to the guilt monster, but be gentle with yourself and remind yourself how well you have done to get that far.
     
  15. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Thank you Canary. Lulu I feel such empathy with you as I have the same thought patterns and sometimes go round in circles with all the guilt/sadness/loss. I do try and console myself with the fact that I did do everything all on my own for so long and I did not know that Mum was going to be sectioned on the day she was or how awful that would truly be. If Mum had allowed me to get help in and seen the dementia services along the way, things may have been different and although I can't change anything now, I do go over and over it and wonder how she would be if she hadn't gone into the CH six months go. I feel guilty as I wasn't always able to cope with the bad times and the abuse but looking back I didn't understand it then, when I was in the middle of it. HOwever I do think that I just could not go back to the bad times when I was being called 40 times a day and so stressed out that I hit rock bottom, esp with having to justify myself to neighbours that I wasn't stealing etc. Like Canary says, the disease is so awful and it is progressive which we just cannot do anything about. I tell myself care is the better option when I think of all the years to where we are now. Also I'm sure Mum is ok and happier in the care home than she woudl be at home as she has activities, nice food, nice staff and medication which, although not quite right, is stabilising her agitation and over all she's safe. Hugs to you Lulu x
     
  16. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello Sarah - I think we have the same thoughts going around and around in a constant loop, whilst all the while knowing we really can't do anything more than we already have. It doesn't stop the feelings though, does it? I understand it all in theory, but the practice is so very different.
    Like you I wonder if I could cope with Mum again, after all I have had a nice rest (well perhaps rest is the wrong word since it has remained pretty much full on) and since a Home cannot be readily found to follow sectioning, well where better than home with us? At the same time I know that we really couln't manage her now. We couldn't then and we couldn't now.But how that hurts ...
    I have to say I don't know your story, Sarah, and donn't know what had led to your mum being sectioned, so I will read up about that. It is an awful time. Coping with watching it all happen, and then feeling bad with all the self doubt is sometimes too much. I shall think of you.
    How many people with dementia end up being sectioned actually? Is it common once a certain stage is reached? Does anyone know? I don't think it is that common.
    Take care, thanks for ackonwledging my post to you.
     
  17. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Hello Lulu, I do think it is quite rare sectioning someone with dementia although I have communicated with a few people on here who it has happened to. It was the worst day of my life sadly but I'm trying to adjust to it as there did not seem to be any option as Mum wasn't able to understand she needed support and rejected everything suggested. If it hadn't been then I think it would have happened at a later date as she was calling the police and was extremely paranoid and agitated. Perhaps if I'd had some help from the healthcare system things may have helped and a different outcome may have occurred. So many ifs and buts and I think she slipped through the net despite my trying to sort things. What I do know is that I was doing it all alone which no-one can sustain forever.... and I'm a tough old bird! It must be so hard for you as you haven't got a CH for your Mum but I am not sure bringing her home would be right as you have had a break and things would more than likely return to how they were, unless a very good care package is agreed with yourself and the professionals and implemented at home so you have support, could that work? However too much change is very anxious-making. Is your Mum in hospital now? What have they suggested in terms of care? Can you source a care home yourself? Hope you can get something arranged very soon.
     
  18. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Yes, I think it is rare also and sometimes can't believe what is happening to us all. So sorry you are having to go through it as well. Like you I felt let down by the various services, and had the correct help been in place as it was needed ..... still, we are where we are. How on earth you did it alone.
    No, I think the choice of Home will be out of my hands to a great extent as there are so few out there that could meet her complex and challening needs. The hospital is trying their best to help i think, though they need her to be discharged now and actively having her assessed by these Homes. There is one Home we want out of those open to us, but no beds of course. You are right about bringing her home but it is this awful loop that you mention that is difficult to shift.
    I do hope it works out for you, too.
     
  19. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Thinking of you Lulu, hope a home is available that will suit you and your Mum very soon as it's awful going round and round in the loop. We are good daughters to be sure and have done our best.
     

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