Decisions to be made - why I feel so bad

Discussion in 'Middle - later stages of dementia' started by Jale, Aug 15, 2018.

  1. Jale

    Jale Registered User

    Jul 9, 2018
    Mum was admitted to hospital 3 weeks ago - short version is that we couldn't wake her up, called paramedics and into hospital we went. Mum was initially being treated for dehydration, possible chest/uti infection. The weeks before being admitted she was eating and drinking less despite my attempts to feed her, walking with a frame had gone to shuffling and that was only to get her up out of bed or put her to bed at night, her carers were unable to persuade her to stand up in between those times. I would have said that at that point she was probably starting into the late stages of dementia (she has vascular).

    In the 3 weeks that mum has been in hospital she has rapidly gone downhill to such a stage there have been many times that I expected (and wished for) a phone call to say that she had passed away - she is hardly eating anything now and drinking even less, she has difficulty moving her arms,she is unable to talk and I'm not even sure if she knows who her family are. When I talk to her there is no reaction at all and the nurses are using a hoist to get her out of bed to sit in a chair and to hear her cry out is something I never want to hear again. The infection was a chest infection and that has cleared up, she has had a ct scan and that shows no or little change from the one she had in January and the doctors are now saying that as far as they are concerned she is "medically fit" for discharge. So we now have a decision to make and after discussing the whole situation with my brother (who lives with her but does next to nothing to help) I feel that we have no option but to start thinking about her going into a care home. This is now breaking my heart - I promised mum 3 years ago that she would never go into a home and I'm now breaking that promise. If this does happen will she understand where she is and know somewhere in her mind that I have done this to her? I have thought about her coming to live with us but I'm not sure I could cope 24 hours a day.

    Do you think that mum is now coming to end of life or am I overthinking things- I just don't know, I've tried many times over that last 3 weeks just to hold her hand but there is no reaction, it isn't my mum who is sitting there just her body. God I wish she could just go to sleep and not wake up and if that sounds awful then I apologise, I want her suffering over

    For anyone who has got this far, thank you for taking the time to read this
  2. yak55

    yak55 Registered User

    Jun 15, 2015
    Oh Jale, I'm sorry I have no experience (yet) of what you and your poor Mum are going through but I do know what it's like to make a promise regarding admittance to a care home and have to break it.
    My Mum always told me that she never ever wanted to go into one but as I've found out as time goes on with this terrible and cruel disease we now have to use 'love lies' and enter into their muddled world.
    Please don't beat yourself up over the decisions you have to make not only for your Mum but you too.
    My Mum is safe and has care 24/7 and that's more than I could carry on doing as much as I love her dearly and wish she was here with me right now.
    Take care of you and enjoy visits to your Mum, it's still not easy but wearing yourself into the ground trying to 'care' 24/7 will make you ill.
    Love Jackie x
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    ((((((((hugs)))))))))) @Jale
    I am sure this has come as a shock to you.
    Unfortunately, dementia gets to a stage where it is just not possible to keep this sort of promise. Mum wanted me to promise her that I would never put her in a home, but I promised to do the very best for her. When she got to the stage of needing a care home I felt that it was the best thing for her - and I still feel that it was. She was well cared for (better than I could have done) and looked after right up until the end. I dont thint think that mum realised that she was in a care home. Im not sure where she thought she was - I got the feeling she felt that she owned the care home - so dont worry about your mum knowing what you have done.

    Once you get to the stage of hoisting it is very difficult to keep someone at home because it needs 2 people to hoist someone and the carers only come 3 or 4 times a day. You would also be on your own at night.
    Look for a lovely caring nursing home for her and tell yourself it is the very best thing you can do.
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Your situation is very similar to mine at the moment. My MIL is currently in hospital after a failed discharge on Monday with dehydration. She had carers in as she is on her own but to be frank she deteriorated very quickly in the heatwave and in the last 2 weeks my husband and I have had to make some decisions about her welfare. Hubbie had said in the past he would never put his mother in a home but her situation is now simply untenable. You can read more in my thread under "I care...." MIL in hospital now what..." MIL can't walk properly needs constant prompting with food and drinks. She can't remember where her bedroom and toilet is in her own home. We made the decision that she would be safe and secure in care. We are currently looking for somewhere. She is self funding. We decided her needs outweigh her wants. She hasn't accepted this totally but there simply is no alternative. Don't beat yourself up over this.
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi @Jale and I'm very sorry to read of the situation in which you and your mum find yourselves.
    First of all, to answer your question, I'm afraid no-one can say with certainty whether your mum is nearing the end of her sadly unless the medics tell you something different, you can't base any decisions around that possibility :(
    Secondly, regarding care at home, I agree with other posters, that your mum needs more card than it is realistic for anyone to provide at home. I too have been through this terrible dilemma, when mum became dehydrated, fell, broke her hip, was doubly incontinent, became unable to weight -bear.......I love my mum dearly, but honestly, a care home was the only option. Mum's nursing home has some wonderful staff who really go the extra mile to make life as pleasant and comfortable as possible for all the residents. They do a better job as a team, than I could possibly do alone at home.....and I am still able to visit mum as much as I can and maintain that personal link, insofar as her condition allows it.
    So.....if your mum will be self funding, I'd start looking at homes. If she needs funding, I'd ask for a social work assessment ASAP to enable appropriate arrangements to be made.
    Once again, I'm so sorry, and I hope all goes well.
    Lindy xx
  6. ferniegirl

    ferniegirl Registered User

    May 10, 2015
    Surrey, UK
    Don’t feel bad about saying you want her suffering to be over. I pray daily my mum’s life will end peacefully but at 93 she just hangs on and hangs on. I understand perfectly the tortuous decision about a care home but it is the best thing for your mum now and you do get used to it I promise. My mum is superbly looked after, there is no way I or my siblings could have coped. Sending you a hug.
  7. Travelling Daughter

    Travelling Daughter New member

    Aug 15, 2018
    Hi @Jale -it's just all so sad isn't it. Like others say, don't beat yourself up about the care home decision - my dad moved into one 2 years ago after he'd been at home with my mum caring for him and carers coming in at unpredictable times. It just can't go on - and with the hoist too. My dad sometimes thinks he's still in hospital, sometimes doesn't know, but he's not distressed with being there. And it's not giving up, in fact there are new challenges ahead with going on loving once your mum is in the care home. If you are not eligible for council funding, as we weren't, start looking - it is not a quick business. Use the CQC guide (it's not perfect but there's not much else), trust your instinct, and even though she's deteriorated so much choose somewhere that is practical for you and your mum's family and friends to see her. We moved my dad from hospital to nursing home when they had told us he did not have long to live, and that was 2 years ago. I'm sorry to tell you that, because it's hard seeing these loved parents still here in such a reduced state, but I'm glad we chose a home that was easy to park at, and had a coffee shop nearby - sometimes I need to take a break from visiting him, or he's asleep, and it's a welcome respite. We need to take care of ourselves in all this - in order to give them the love we want to. Well done with all you are doing for your mum. You are not alone in it.
  8. Jale

    Jale Registered User

    Jul 9, 2018
    Thank you all for taking the time to read the epilogue and comment, my head is telling me it's right, my heart is a different matter.

    Mum isn't self funding, but the hospital social worker is going in to see her this afternoon (wish her luck with that) and then we have a meeting with her tomorrow so will have to see what her findings/feelings are. Mum looked better than she did yesterday but has eaten very little again.
  9. kindred

    kindred Registered User

    Apr 8, 2018
    I made and broke that promise too about the home. I believe the course of this illness is such that we look after our loved ones as long as we can at home, and then there is a natural and inevitable progression into care. It is so very hard to look after them throughout the whole illness. Your love for mum really shines through but you need a team to look after her now. with warmest wishes, Kindred.
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    This business of making the promise that a PWD will not be put in a home crops up regularly. It's very sad because it's such a natural thing to want to say.
    However, given the nature of this appalling condition, it often becomes necessary to 'break the promise'. Those families whose PWD doesn't remember the promise are perhaps fortunate.
    My wife never asked if I would keep her at home. After a nail-biting hospital stay a care home became the obvious decision. As it turned out, the care home, as explained in previous posts, was not very good.
    Sue was talking less by this stage but there was never any indication that she was upset about being in the care home, where we visited on an almost daily basis.
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    From what you say about the stage your mother's at, and from personal experience of similar, she may no longer be aware of where she is anyway.

    Relatives often have to break their promise about never putting someone in a care home. But the fact is, anyone who has lived with dementia beyond the early stages, will know that it may often be a promise that may well be impossible to keep. By the time someone really does need 24/7 care - I.e. someone on hand ALL day, ALL night, 365 days a year - this is often so difficult or impossible to,provide in a normal home setting without family carer(s) becoming utterly exhausted or having their health break down from tiredness and stress.

    Please don't feel bad about it. From what you say, a good care home will be the best place to provide the constant care your mother needs. It won't at all mean that you no,longer care - it means that you are doing the best you can for her in the circumstances.
    And as others have said befor, it won't be you putting her in a care home - it will be dementia that is responsible for that decision.
  12. Jale

    Jale Registered User

    Jul 9, 2018
    Mum looked worst today than yesterday although she did eat most of her lunch - eventually. Hubby and myself had a meeting with the social worker - away from mum because I felt so uncomfortable talking about things. As we thought, the other options that had been offered were actual non starters and the social worker agreed that a care or nursing home is the only option available, so the wheels are starting to turn.
  13. Bod

    Bod Registered User

    Aug 30, 2013
    You promised not to put a hail, hearty fit person into a Care Home.
    Did you think twice about calling the ambulance to take her to hospital?
    She now needs more care than you can give, so why is a Nursing Home place causing difficulty?
    By her going to Nursing Care you are giving her the best possible care.
    Would Convalescence Care be an acceptable name?
    A lot of questions, with no real answers, I know.

  14. Jale

    Jale Registered User

    Jul 9, 2018
    Two care homes have been to assess mum and both have said that she is too high need for them so social worker is now looking for nursing homes.
  15. Jale

    Jale Registered User

    Jul 9, 2018
    A placement at a nursing home for assessment has been found so hopefully mum is being discharged from hospital tomorrow to the home. Hubby and myself have been today to have a look around and it seems to be ok, clean, no smells (I remember my great auntie years ago lived in sheltered housing and it always smelt of pee!) and the residents that we saw looked happy and well cared for. I'm trying to see the positive side but at the moment am failing. Time will tell
  16. TiddyBarratt

    TiddyBarratt New member

    Sep 3, 2018
    Hi Jale.... I completely understand your feelings as I feel in almost the same place....except my mum is still at bed most of the time....not wanting to eat or drink....bed sores etc. I am so good at giving advice and yes I say don't feel bad you want what is best for your too....I can't say if she is coming to end of life as there are so many ups and downs. I dont think we should feel bad not having our mums living with us....but we do... I can relate to so much you are saying.... including the brother thing!!!...And no the sleep thing it would be so much kinder for your mum...I guess I just wanna say I feel your thinking and emotions and your pain... I wish I could suggest to make it better however I am still seeking that route for my dear mum...sometime its just good to know someone else is feeling the same...thinking of you all.
  17. Jale

    Jale Registered User

    Jul 9, 2018
    It's now been a week since mum was discharged from hospital and into the nursing home. She is eating a lot better, I don't know if she is happy because she cannot tell us, but I am working on the fact that because she is eating and drinking then something must be right. I am still seeing signs of her being agitated or worrying about something, and she is not really communicating but we do sometimes see her smile.

    We have an assessment date now in a couple of weeks and now I'm worrying about what if mum has to be moved somewhere else. This flipping illness - there always seems to be something to worry about.
  18. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    Just caught up with this thread @Jale. It must be a very tough time for you. I know your mum is already in the home, but I would have said that, as you well know, every single situation is so very different and we have to go with what is right at the time, for the PWD and for our own health and sanity also. I chose to keep mum at home. She would have been funded for a place by SS and there is in fact an LA owned home not far from us that I'm pretty sure she would have qualified for a place at, but I wanted to keep mum at home for all sorts of good reasons (we had lived together for the previous 7 years anyway, I was her constant 'comfort blanket' and there were also cultural and language issues, nothing 'extreme' on that front, but enough 'differences' that it would have adversely affected her in a home in my view). Having said all that, I did always keep that LA home in my mind as I did have my very 'dark times' as I called them. I was on my own, albeit with a good agency supporting me with care calls, but on my own the rest of the time, and it affected me terribly both on a mental and physical level. Already, ten days after mum's death, I feel 'better' in that that dreadful, dreadful period is over and mum is free of the vile dementia that afflicted our lives. I am very sad too, but the 'relief' that it's over is a good balance to that, at the moment, anyway!

    It sounds like the move into the nursing home has been OK for your mum so far, and I hope it continues that way. At least with this awful disease, one thing that it does give us is lack of, or reduced, awareness in the PWD which of course helps in these scenarios. Although my mum was at home until the last 48 hours, she never really knew quite where she was. Sometimes she thought she was dead (!), sometimes in hospital, and sometimes I'm sure she was back at home in her mind, 60 odd years ago. It never distressed her much though, and it gave me comfort to think that if she'd had to be moved into a nursing home, she would have continued thinking she was at a hospital, dead, whatever. Horrible, but a blessing in a sense. I was also in a position where I did not have to work, but had I'd still had a huge mortgage, giving up work (and possibly losing my home) would have absolutely not been an option.

    I don't know how you must feel as I never go to that stage, but I can tell you that caring for a PWD at such an 'extreme' level as I call it is, as you no doubt well know, incredibly hard on the carer. We cannot begin to describe how it is to someone who hasn't done it, and it's a waste of time trying. No one can know until they are in that position. Even now, as I think back, it doesn't seem like it was actually that bad. But that's because it's over, never to be again, but my goodness, it was so incredibly hard at the time.

    It sounds like you have made absolutely the right decision and I hope it continues to work out well.

    Apologies for the essay!

    Best wishes.
  19. Jale

    Jale Registered User

    Jul 9, 2018
    Marnie, no need for apologies, so sorry for your loss and many thanks for taking the time to reply, it is comforting in it's own weird way that there are so many people on here who are walking the same path and sometimes seeing things from a different perspective really helps.

    I will admit that the very fact that mum is safe is a massive relief and for that alone I am sleeping a bit better at night. It is early days and I still hope that Mum does not have to suffer much longer with this awful illness, daily I wish she could go to sleep and not wake up, I know that sounds awful but seeing her become a shadow and slipping away is so tough.

    Many thanks again, take care x
  20. shaktibhakti

    shaktibhakti Registered User

    Sep 5, 2016
    My mother is now advanced and i had an assessment yesterday for a lovely carehome in sutton, lovely women & they were so sweet with her. she still can speak & has numerous health issues along with this disease....Mum still has resistence and her GP came 4 weeks ago to try & speak to her about a carehome but she just got furious and blamed me. I need to think she needs the best care, the care package now cannot give her this & its now her flat isnt a safe place for her anymore! shes still very manipulative & charmed the carehome manageress & assistant, fair enough...she does have challenging behavior if shes not getting her own way! You have to do the best for them. Im not taking on this guilt stuff....I have done much for her in bringing & buying her food, taking her out etc...if she remains in her home too much longer something will happen & then will be far worse! hard choices but its 'tough love'.....Ive chosen a not posh,small home not run by large company. A homely home that got voted in the top 20, not for decor but for quality of care! I visited & will return next week as they said to take my time which is nice. They know the problems with mum & ive told them ill get the room ready for her. In meantime sociol worker & her GP are coming next week to assess her again....big problem is shes very skilled at hiding the fact shes no longer 'with us' in the way she was.....

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