1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Jasmine123

    Jasmine123 Registered User

    Jan 22, 2014
    Hi all,

    I am not sure whether I am actually looking for advice or looking for confirmation that I have not let my mum down but anyway here goes ... My mum is 60 and has quite advanced dementia, she can now no longer communicate, needs help eating, dressing, bathing and actually I think needs help with everything. She can still walk but will take half an hour trying to get up the stairs as is so unsure of her footing. At present my dad looks after her, with carers coming round 8 hours a day during the week and myself and my siblings looking after my mum on the weekends. My dad, and now my siblings have recently started saying they should look at a home for her. When I am not with her, and I only see my mum once a week I am appalled beyond belief at my mum in a home. She no longer speak or comprehend anything so she there is no chance of her having an idyllic life in a home playing cards with other like minded elderly, I can't even bring myself to think about what would happen to someone who was as advanced as my mother actually in a home. When I am with my mother though, she seems to acknowledge so little of me that I think that why are we causing such a strain on ourselves to keep my mum at home when my mum doesn't even notice she is at home. Essentially my issue is I have three options available to me I think:

    , 1) accept that I am not a primary carer and am off enjoying my own life and it is my dad's decision whether he looks after my mum at home or puts her in a carehome.

    2). Convince my dad and siblings not to put mum in a care home and organise carers 12 hours a day, to limit pressure on family

    3). Become main carer or at least take organisation of my mums care. I wouldn't want to have my mum move to my small flat with no garden so would have to really move back to my parents which I really don't want to do as was unhappy while living there last.

    Really I am just bitter that I am faced with these options while still in my twenties.

    Thanks for reading, if nothing else, I have found it therapeutic to write this note.
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hi, Jasmine. I don't know that I have any brilliant advice, insight, or suggestions for you, but couldn't just read and run.

    I am so sorry to hear about the situation with your mother. This must be very difficult for you and all your family, having this happen at all, and at such a young age. I can't even imagine what that must be like for you.

    It sounds like you are really struggling with the situation, and no wonder. I am sure you will get sympathetic ears here but of course there isn't anything anybody can do, to "fix" the situation, and I am sorry.

    I wonder if you would find it helpful to talk to somebody about this. Maybe a support group, maybe a therapist or professional, maybe someone at Age UK or the Alzheimer's association? Perhaps you already do this?

    Certainly you have laid out some of the possible options. It's great you are trying to see the possibilities.

    I wonder if you can tell us more about what kind of care your mother needs. Is she incontinent (and if so, just urine, or both urine and bowels)? Is she able to feed herself? Can she get in and out of bed by herself, or does she require a hoist/transfer assistance? How does she sleep? Are there any issues with giving her medications? Does she have other health issues besides the dementia? That sort of thing.

    I think that before you decide to physically shoulder the burden of being your mum's main carer, you might want to consider a trial period. If you do go this route, you will find there are many others here who provide live-in/hands-on care 24/7 and can give you lots of advice. Also before you commit to this, you should make sure you are physically capable of handling things and get the proper training and instructions; nobody would want you or your mother to be injured.

    Adding more carers (increasing from 8 to 12 hours a day) would certainly be a help for your family, but of course does not eliminate the burden of care. Sometimes the overnights can be very challenging. If this is financially possible, it's certainly an option the family could discuss.

    And you could, of course, back off completely and just accept whatever your dad decides, as you say.

    Do you feel able to talk to your dad about this at all? Is it possible there are medical needs that are advancing beyond the care that can be provided at home, or other pressing reasons to consider residential care? Do you feel that you can talk to your father and your siblings about your feelings and concerns and that they will listen to you?

    I hear that you sound devastated about the idea of your mother going into a care home. It's not how you want things to be. This is a horrible disease and it's not just those with dementia who suffer, but also their families, friends, and caregivers. I'm sorry you are having such a difficult time right now.

    I don't think you have let your mum down. I think you sound like a caring, but stressed, daughter who wants what is best for her mother.
  3. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    My mom is in stage 7 on a CH. she needs to be fed, clean, and moved from bed to chair by staff. She rarely talks anything (and I don't understand ).

    However she smiles looking to other residents. She is clean and fed. Her bed is dry.

    On CH (on Brazil) she has exercises to avoid muscular spasm contracture. Sometimes OT help her painting images. (Previously printed). Staff move her at night to avoid pressure sores. (Of course there are problems too however I can take a week or month for me without worry)

    As advice, you can help your dad on care and see what care is necessary.
  4. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    Hi Jasmine
    Has your mum had a needs assessment from Social Services and has your Dad as main carer had a Carers Assessment with Social Services? If not arrange both of these for them. If you haven't already done this SS will be able to advise on how much care should be needed, possible respite available, possible aids around the home to make things more comfortable.
    You will need to consider funding aspects either way and SS can explain the options. I haven't been dealing with such advanced state dementia as you but have read how difficult it is to handle and no one with any experience of such matters would consider you had let your mum down. Your Dad is very lucky to have your extra support and you need to consider his ability to cope and the affect on his health to in making your decision. There is no right or wrong way to go from here.
  5. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    Hi Jasmine

    What a lot to take on in your 20's! Your parents are lucky they have such caring children.

    I think your dad's needs and wishes need to be the most important consideration at this stage. You shouldn't underestimate the pressure put on the prime carer, even with help during the day. Your dad isn't getting any younger and he deserves to have some life of his own, and time to rest.

    Your mum is only going to get worse unfortunately and her needs will increase to a level that will need 24 hr care. If your dad decides to go down the care home route you have time to look and find the right one. You don't stop caring for your loved ones when they are in a home, it just allows you to do it on your own terms and have a break when you need to.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I thought I would mention that care homes are not so bad.
    My mum is in a care home and the staff are lovely to her. There are activities and outings organised and the staff try and get as many as possible involved (though no-one is forced). Mum is content there - she has people to talk to and she seems to respond well to the routine and simplified life there. Also, the carers get to go home and have a rest when their shift ends, so they are not exhausted and stressed.
    It was horrible to think that mum needed somewhere like that, but she is much better there. There is always guilt associated with this sort of decision, so if your dad is saying that he thinks you need to start looking for a home then I suspect that it is all getting too much for him.
  7. looviloo

    looviloo Registered User

    May 3, 2015
    I was going to say the same thing - my dad is in the middle stages of dementia and has moved to a lovely care home, only 12 residents and has a very warm and cosy feel. The staff are wonderful. Not all care homes are the same, and different people require different facilities. Have you had a look around, to check any out? Don't be put off by any that don't fit your idea of a 'good' CH, keep looking because the right one for your mum could be out there somewhere.
  8. Jasmine123

    Jasmine123 Registered User

    Jan 22, 2014
    Thank you all for your comments and responses.

    Amy in the US - in terms of help my mum needs, she is entirely incontinent, needs help eating, doesn't have a hoist to get out of bed tho might in a month or two as have to lift her out of bed at present, sleeps amazingly and apart from dementia is in excellent health! In answer to your comment that I should really consider whether I should take in the full burden of my mums care, I don't actually think I am seriously considering this, I think it was more me having late night waves of guilt and fear about my mum being in a home, In terms of getting overnight carers, I think my dad wouldn't want a live in carer really. I think that my family is just considering a care home as it is really hard work looking after my mum and my dad doesn't want to anymore.

    Selinacroft - social services have been quite actively involved the last couple of years, have provided a lot of care, but thanks for your comments.

    Jasmine flower - I agree that my dad's decision is more important then mine as he looks after her full time and should get to enjoy his life. And maybe I should start looking for a care home but the idea of even researching one fills me with dread.

    Canary - my mum wouldn't be able to get involved in any activities as she can't really interact.. All she enjoys doing at the moment is walking around constantly and a care home would just restrict her doing that. I am glad to hear you have found somewhere that your mum is happy.

    looviloo - am glad to hear you have found somewhere nice for your dad.

    Thanks all for your comments and experiences. I do realise that there is no solution and I should just accept a care home. I just wanted to discuss it as my friends don't really understand where I am coming from.
  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    If you found the right care home, catering for dementia, it need not restrict your mother's walking about at all. My mother's (specialist dementia) care home was lovely, cosy and homely, purpose built and designed with 'wandering' in mind, and plenty of space to do it. Until her final year or so my mother wandered a lot (as did several other residents) including frequently half the night. Nobody ever so much as raised an eyebrow - it was accepted as entirely 'normal' and even in the middle of the night there was always a staff member on hand to reassure, and maybe make her a cup of tea and piece of toast.
  10. looviloo

    looviloo Registered User

    May 3, 2015
    That's so lovely, Witzend :)

    When my dad was in an intermediate care home, several of the residents had dementia and would wander constantly around the home. And they all seemed happy and well catered for. It wasn't the right place for my dad and the stage he was at, but it was the right place for many of the other residents there.

    Jasmine, it's such an upsetting and unsettling time for you all, and you can only do your best. Exploring all options is part of that, and slowly your mind will settle on the right course of action for you and your mum and the rest of your family x
  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, mum is also a night wanderer (though not so much now as her mobility is going) and mums experience is the same. There is also a garden that they can walk round.

    Why dont you go with your dad to have a look at the care homes? You can talk to the carers about what your mum is like and what sort of activities they do. They can usually involve (to some extent) even severe dementia. Most of the residents at mums CH enjoy the times that a lady comes and sings old songs - even one of the residents who has sever dementia (no longer able to speak, or walk and is developing muscle contractions) will wave one hand in time to the music, even though she is no longer able to do other activities.
  12. Slugsta

    Slugsta Registered User

    (((Jasmine))) as you say, you don't expect to be dealing with this at the age of 20 :( In your position, I think I would have been stamping my foot and shouting 'Not Fair' - and it really isn't. I'm not surprised that your friends don't understand what you are going through, it would be very unusual if any of them had had to cope with this.

    From what you say, it sounds to me that your dad's mind is made up, is that right? If that is the case, I think all you can do is support his decision and help him find the right place for your mum. He is the primary carer and his health is important too.

    If the decision has not yet been made then that is a different matter, your dad might be very grateful to you for showing him possible aternatives. However, it does sound as if residential care will be needed sooner or later, so your research will certainly not be wasted.

    Whatever the decision, you will find a gold-mine of support and advice here :)
  13. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    East Yorkshire
    Yes, Witzend has got it completely right. I hated the idea of dad going into a home but eventually the decision was taken out of our hands when he was hospitalised with sepsis in September. He hasn't been back to his own home since and may never be well enough to return home. Social services gave us three care home options, all of which could cope with dementia with exceptional needs. Whilst it wouldn't have been my particular choice of home, I can see it's right for the residents and that's what counts. The wanderers are allowed to wander within the secure building and get gently guided away should they walk into another residents room. An elderly gentleman took up residence in dad's armchair today and settled into a conversation with me whilst dad was asleep. He told me his parents were coming to get him :).
    One of the things that has surprised me the most is how rewarding it is to get to know the other residents and you can see that they just all tick along with one another. They have their disagreements much like any family would but it's actually made me a lot more understanding of the world of dementia.
    Dad is pretty much bed ridden for now and he has a proper mattress like they have in hospital which alleviates pressure sores. He is cosy and secure and we are getting some much deserved rest. It's a massive decision that you face, I really feel for you and adjusting to putting a loved one into care takes time but just bear in mind that a care home may not be so bad after all. It's a good idea to research several homes too, despite that feeling like an awful task but it really does help you get a feel for the right kind of place. Once you find the right place, you won't feel that it's such a terrible decision if a care home is the route you end up taking xx
  14. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    East Yorkshire
    I forgot to say, dad doesn't interact with any of the other residents as he's unable to but he seems quite content. I felt appalled at the thought of dad being in a home, even day care upset me at first, but I now see that it's right for him. The right care home will be well equipped to deal with someone in the advanced stages of dementia and if you decide to move your mum to one you have in no way let her down. It could even be one of the kindest things you do for her. I feel like my posts are pushing you to the care home option but I just want you to be aware that it's maybe not as bad as you're expecting. I had no experience of care homes up until a few short weeks ago but I've quickly got into the swing of a new routine, and to be fair, dad has too. He's got everything he needs, a nice room, a cosy, warm bed, 24 hour care, nutritious meals, security, a garden and a loving family visiting him. I hope you come to a decision that works for you all. Sending you a big hug :)
  15. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello everyone. My mum has actually improved since she moved into a care home. She was living alone with carers. This is so improved now that i dont feel guilty. I dont think she would be alive if she had not been moved. She is also so much happier. It fan work. You just have to pick the right place.
  16. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    I think it was more me having late night waves of guilt and fear
    about my mum being in a home,

    I am assuming that your siblings live near where your parents live, or at least closer to them than you do, and therefore they are involved in helping your dad care for your mum. Many of us have sons and/or daughters who have moved away from home to find work, study, etc. so I think it's good that you are able to visit once a week even though you live some distance away. However visiting does not give a true picture of the reality of caring for your mum day in, day out. Believe me, I am not trying to make you feel guilty.

    Others have posted positively regarding their loved one being cared for in a nursing home but getting to that point involves much soul searching, heartache and tears. I think all would agree that in the end dementia decides - so don't be too hard on your dad.
  17. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Mum is one of those who improved going into a nursing home. She isn't great at the moment though it is the disease progression.
    Just as another daughter , dad died 2014 his final years with mum were horrendous. Dad and I had talked about him and mum moving over to my side of Sydney. I was happy to let it trundle alone. Dad had told mum about the idea she had grumped but hadn't rejected. It would have happened . Sold their house and bought new with us on our side.
    Dad died . He didn't get to have peaceful last years. I regret not following it up .
    I think if your dad is struggling to the point where he is considering a home it must be hard. One odd thing mum decided on the day dad died she couldn't live at home. She had input into her nursing home. Mum improved out of sight in a nursing home.
    Until she broke her hip I had better conversations ,some of the time, then I had had in ages.
  18. cobden28

    cobden28 Registered User

    Jan 31, 2012
    Perhaps what you could do is to do some research on what's involved in moving a relative into a home - contact a few direct to see what sort of facilities and care they offer, and then present all the information to your Dad for him to make the final decision if he's your Mum's primary carer.

    Whatever your Dad then decides, let him know you're there to support him in his decision whatever it may be.

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