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. shark2

    shark2 Registered User

    Aug 22, 2012
    136
    n ireland
    Hi everyone, mum has been in hospital 14 weeks and is moving on in the next few weeks to a care home I feel bad but that's another story.

    I've talked before about my dad being dead and I'm an only child and how my mum was so clingy with me. I've also talked about my inability to say no to her .

    I've basically been visiting twice a day for the 14 weeks. She can't remember my name or if I'm her daughter but she remembers if I do miss a visit. How does that work:confused: Anyway my problem is that hubby and sons want to book a holiday for just the 4 of us - she has been on holiday with us the past 20 years. Just can't make myself push the book button :( . I worry how she will cope if I don't visit for 2 weeks :(

    Help
     
  2. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    164
    I'm so sorry I can't help, but sure someone with thoughts will be able to help. I just wanted to say guilt is a terrible thing isn't it? I'm lucky in that I have a sister who shares mums care with me. But when I go on holiday mum doesn't settle and doesn't really like that I'm away. I feel so bad and just want to get home to stop feeling guilty! How sad is that.
    Do you have any other family that might visit or what about Age Concern or the Alzheimer society. They can sometimes help with volunteer befrienders? It is so hard but I am sure you really need a break. Good luck and I hope someone can offer some suggestions! Do they have hospital visitors?
     
  3. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    876
    Press that button!If your Mum is in a care home she will be looked after.You have a right to a family life with your husband and sons.You probably can't make your Mum happy but you can start to look out for yourself and try to make your life as happy as possible.There is always something to feel guilty about but you shouldn't you've done as much as you can for a very long time.Time for you now!
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, shark, I saw your other thread but hadn't posted yet. I'm sorry your mother had such a bad fall and such a long stay in hospital (14 weeks! I can't imagine!). I'm sure that has been very difficult for everyone for a variety of reasons.

    You said in your other post that you felt that your mum going into a care facility was you "betraying" your mother. If you care to say more about that, I am sure you will get some sympathetic ears here. Without knowing you or more about the situation I can't address your specific concerns, but I can say that it is not a betrayal of anyone to see that they are properly looked after, whether that's in a facility or their home or your home or wherever.

    For whatever it's worth, I am an only child and my father died in 1998. My mother is also an only child and her closest relative is an elderly first cousin with health problems who lives 100 miles away. I always had a difficult relationship with my mother, as she was critical, unpleasant, depressed, needy, et cetera. Dementia has not improved any of this or our relationship, but I've been providing care because there is no one else.

    You say you have visited your mum twice a day, every day, for 14 weeks. I hope for your sake that the hospital is not too far away! That does not sound like you have neglected your mum. In fact, I would say that's above and beyond reasonable expectations.

    You say that your "problem" is that your husband and children want you to go on holiday with them. When was the last time you took a holiday with your husband and/or kids? I know this might be difficult to hear in the place where you are right now, but most people would not view a holiday as a problem, but rather as something pleasant, or as an opportunity. Your family wants to spend time with you. That's good, right?

    Your mother is important, but so is the rest of your family, and SO ARE YOU.

    When my mother went to the care facility, because she was so unpleasant towards me, I was advised not to visit at the beginning, and I did not visit her (other than the day she moved in) for several weeks. When I did begin visiting, I had to keep it short and be careful not to be alone with her, as my presence would set her off. She settled much better without me around. I'm not saying that is the case for everyone or the right decision for everyone, but it's something to think about.

    Your mother will be well looked after and it's not a betrayal in any way to make sure she has the care she needs and deserves. I doubt there is anything you can do to make her happy-but you can work on yourself. (Not only can I not make my mother happy, nor was I ever able to, but I was never able to please her, make her proud of me, or be interested in me in any way. None of that was my fault. It took me years to understand it was her, and not anything I had/hadn't done, that made things that way. Once I accepted it, my life got a lot better.)

    You have the right to your own life and especially to time with your husband and children.

    I don't mean to sound harsh or unpleasant in any way, just to present a slightly different perspective. I hope you are able to work through things. I hope you'll please come back and let us know how you get on.
     
  5. shark2

    shark2 Registered User

    Aug 22, 2012
    136
    n ireland
    Many thanks for taking the time to reply. Still haven't booked the holiday...working up to it. Had a call from the care manager in the hospital to say she will be able to move into the care home next Monday or Tuesday. God love her..she thought she was going home.

    Am dreading this transition and pray my mum settles in well. Maybe then I will book a holiday
     
  6. Lawson58

    Lawson58 Registered User

    I think you need to work out what is a good balance between the needs of your mother and those of your husband and family.

    They have a right to enjoy your presence and a holiday would be beneficial to all of you, especially when you know your mother will be well cared while you are away. You are not abandoning her and time invested in your children is always worthwhile.
     
  7. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    215
    North East
    I know exactly how you feel. I am an only child and my Dad is in care but basically my husband and I are his main visitors. When he went into care everyone said we should go on holiday like it is a magic pill. But it means he won't get regular visitors and I'm scared of a crisis if I am away. However I've compromised and booked a week in the summer just in this country so I am not too far away. However on the flip side we could go on like this for years and meanwhile my life is psssing me by. It's a difficult one. Good luck. Xx
     
  8. marsaday

    marsaday Registered User

    Mar 2, 2012
    541
    Hi Shark,

    I missed your thread about mum going into hospital and was wondering how you were getting on. Haven't been on lately much myself. This transition will be tough but it is for the best. You can now move on from being the main source of care and support and get a bit of your life back.

    I remember last year you were taking her to Florida because you couldn't say no and we all advised against it. I think you know your husband and boys have been very patient and deserve a holiday with just the 4 of you. Your mum will be fine.

    I went on holiday the first time my Mum went into a home and it is very hard to relax. You will be thinking about her all the time but at least your family can be together for once without the constant stress of looking out for Granny. As you know I did the same with my Mum on family holidays ( but not for as long as you have) and it's a hard habit to break. Now that my mum's in a nursing home and well advanced I go away at every opportunity and don't worry half as much as before. I know in my heart I have given her my best.

    Go ahead and push that 'book' button.
     
  9. Carrie Anne

    Carrie Anne Registered User

    Sep 7, 2011
    67
    Wiltshire
    I went away for a week a fortnight after mum went into a care home. Everything was fine, she survived and it did me the world of good. There was so much to do after she moved, clearing the house, washing and labelling her clothes, getting her house ready for letting out. If I hadn't had that week in the sun to switch off a bit it would have been too much to handle.

    Go for it, your boys won't always want to go away with mum and dad so make the most of it.
     
  10. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    You are filled with your need to care for your mother. Have you thought thst maybe your children feel exactly the same about you? Try to see it from their perspective. They see you stressed and worn out and need to protect you. Please let them. Your mum will have faces she will see every day. She wont be alone and it may be your chance to create new boundaries. Visiting 4 times a week instead of twice a day. Your mum would get used to the new habit. Its a long road and you need your strength to last so look after yourself. Your no good to anyone burnt out.

    We are all with you. Sending you strength and love. I am in exactly the same position with the care home move in the next couple of weeks. It can work so focus on the good that might happen rather than the bad. None of us can predict the future.
     
  11. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Why do we beat ourselves up all the time ..?

    Haven't been on here for a while, busy sewing labels in clothes (she can't understand why I do this and keeps telling me not to bring too many of clothes into the CH because she says she won;t be there much longer ), then the numerous phone calls and form filling for benefits, sorting out bank accounts, finances, cancelling and sending things back, contacting all her "handy men" to cancel or pay them as well, letting family, old friends, officialdom know her new address, keeping an eye on the house and cleaning up and throwing things out, clearing the jungle in the garden (something she wouldn't let me sort out while she was there), trying to get social services to do a review because we've now run out of capital to pay the CH. Then there's the guilt and self analysis - I can relate to what you are saying Shark2 and Amy , about the feeling of betrayal, and I would so love to have a break, but can't bring myself to go further than a half-hour's drive away "just in case". She's had another emergency admission to hospital, another all-nighter in A&E. This time they kept her for a few days then sent her back to the CH still with a chest infection and fluffy stuff in her lungs (what's that?!) - she's now so breathless she can hardly walk and can;t finish her sentences. The GP's attitude is she's got dementia , what do you expect? He actually said to me " hasn't anyone told you it would get worse?" which I thought was ever so slightly patronising, rude and dismissive - but more or less what I've come to expect from the medical profession lately. Maybe he's right, and I have very little fight left in me to argue with the NHS anymore, but on the positive side my mother has some really lovely care staff around her all day and all night, the food is home cooked , she's eating and drinking well, all much more than she was getting at home.
     
  12. It's tough. I've been in that situation for years and only a few months ago had a holiday wrecked because Mum found out that I was away. Even though I visited her twice a day, I knew that, if necessary, I could replace visits with phone calls and auto-connect Skype chats without Mum realising I hadn't actually visited. Dementia has a wonderful way of adapting to odd things like that.

    I had planned whilst we were away to call her every evening and Skype her so that she still had a proper sense of seeing me. In doing this, she would not have noticed that I had not physically visited.

    But when someone inadvertently let the cat out of the bag then day after we left, she immediately registered and retained the information. Shocking and worrying information registers deep and comes back to bite!

    Mum spiralled downwards from that point on, as I knew she would if she even suspected we were going away. She used to come away with us, but even that ended up being horribly stressful for her and of course for us. My family have had holidays without me before and it's just not right and made me resentful. Mum would never have wanted me to miss out on a holiday with my children.

    But on this last 'holiday' experience, I spent the whole time with a bag packed ready to leave my family there and return home, I spent hours chasing a phone signal (let alone the Internet connection we had expected) and spent even longer on the phone to her and her carers several times every day. I never want to have to go through that again.

    The fear had set in that I was not there and she deteriorated to to the point that had I not come him the day I did she would have ended up in hospital. However, I am confident that had she not had a clue that we were away, she would have been ok enough.

    Two weeks is a long time to find out how your Mum will react. My holiday was two weeks and I know a week would have been much less terrible all round. Perhaps you could start with a week and go for the fortnight next time, once you can feel confident that she can cope. Or, if there is time before you go away, take a week off visiting and have a dummy run.

    My recommendation is to consider going away without telling even her carers and to maintain daily phone contact and speak as though you'll just pop in at any moment. Recruit everyone she knows to visit her whilst you are away, write notes from you for them to leave with her so she feels that you have visited and trust that she will be safe, even if not happy!

    You'll enjoy yourself far more once you know she is ok.
     

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