1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

feelings of guilt that mum is in full time care

Discussion in 'Younger people with dementia and their carers' started by whiteoleander, Apr 11, 2010.

  1. whiteoleander

    whiteoleander Registered User

    Apr 11, 2010
    Hi I've just joined today, have been feeling very down recently My mum who is 61 was diagnosed with alzheimers a few years ago. She is in full time care now and we were very lucky in finding a lovely nursing home where she is very well looked after.
    I go to see her regularly ,just recently her health has declined significantly, she no longer recognises me, she struggles to mobilise and she struggles to eat and drink now.

    Every time I drive away from the home I sob all the way home, I struggle to cope with the feelings of guilt that Im leaving her there, even though I know its for the best in our circumstances and she is in good hands.

    I have a good support network of friends, but when I talk to them I feel none of them can truly undrstand what its like to watch my mothers decline and the guilt I feel over having her admitted to the nursing home.
    I'm just wondering how people in similar circumstances deal with it. Any suggestions are welcome
  2. whiteoleander

    whiteoleander Registered User

    Apr 11, 2010
    Thankyou it helps a bit just knowing I'm not the only one, I think I'm just having a low day. I know we've made the right descision with my mum and we were so lucky to have found such a lovely home. Its just a choice I wish I'd not had to make xx
  3. Vonny

    Vonny Registered User

    Feb 3, 2009
    Hi, there aren't many of us who don't recognise that old Guilt Monster. You know that your mum is in the best place possible but I don't blame you for crying all the way home - I would myself. Your mum is very young to be suffering with this foul disease and it's only natural for you to feel down about it.

    I hope you find as much support and help as I have here on TP. xx
  4. whiteoleander

    whiteoleander Registered User

    Apr 11, 2010
    Mum was diagnosed 6 years ago, I did think that it would become easier with time but each visit to her shows a change in her condition. It does help though to read through the forum and realise I'm not alone in feeling this way xx
  5. Hodsoj

    Hodsoj Registered User

    Apr 11, 2010
    Hi, I'm new to this but i wondered if anyone has a concern like me. my mother in law (nanna) has been in a full time care home for 7 months. we visit once a week but my daughter aged 11 gets very upset to the point were i have had to stop taking her to visit her nanna. we used to see nanna up to 3 times per day before she went in the home. my husband and i still visit with other 2 daughters but it is very difficult and uncomfortable, she knows me but no one else. she is always in the conservatory sat in a chair asleep when we visit. we only stay about 40 mins as it is so difficult to hold a conversation. did i ought to encourage my 11 year old to visitor not????:confused:
  6. parrypamela

    parrypamela Registered User

    Jul 23, 2009
    Hi, its just my opinion so may be wrong. I would not try to encourage your young daughter to visit now. The disease does not get any easier and personally I think it is best that she remembers the nanna she knows and not what this terrible thing is doing to her.
    Let her keep her good memories but talk to her about her nanna when you get home and reassure her that her nanna has been asking how she is etc.
    My son-in-law stopped visiting his nan when she got worse because he wanted to remember her how she was to him and not how she was deteriorating.
    Hope this helps????
  7. Kez

    Kez Registered User

    May 12, 2008
    I know how you feel. We are just looking for a care home for my Mum. She is just 66! I live in London and my Mum and Dad live in Scotland. I have come up for a few months to help Dad sort things out. Loving being so near and being able to help out. But I am gonna find it so hard to move back down again. I know my life is in London and like you feel terribly guilty.

    Find this forum so helpful and its great to know you are not on your own.

    Thinking of you
  8. whiteoleander

    whiteoleander Registered User

    Apr 11, 2010
    Thankyou, Im lucky that mums home is only 40 minutes drive away. It will be tough when you move back but you can't put your life on hold. When mum was first diagnosed I was away in university. It was like I went away and came back one day to a different person. Since uni work has bought me a bit closer to home, I felt guilty about not being back at home but like you I came back often to help out. Just have to keep reminding myself how happy my mum was when I moved away to pursue the same career as her and I know she wouldnt want anything else for me.
    Hope everything goes well in finding a good home for your mum,
    Good luck x
  9. Beezed

    Beezed Registered User

    Apr 28, 2009
    Hi Whiteoleander,

    I could have written your post myself. I cope by reminding myself how vulnerable mum was. She was a danger to herself and others, lonely and scared.

    She is now warm, safe and well cared for and the bonus is that I live 5 mins walk away so see her a lot and under less stressful circumstances. I used to dread going to her house worrying what I would find. It doesn't totally assuage the guilt but deep down I know I did the right thing.

    Hodsoj I have told my 2 sons that if they are finding it difficult watching the decline of their Nana, then I will not force them to visit. Sometimes it is better to hold on to the happy memories. Hope this helps.

  10. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    My husband was diagnoised with A.D. when he was 56.

    Although I am a disabled Carer, I kept my husband at home against Consultants' wishes. No way was my husband going to go to the Hospital unit and I found a beautiful Care Home with E.M.I. Unit about 5 minutes from me. The Care he received was brilliant and I realised I should not have kept Peter as home the extra year.

    Visiting was heartbreaking. The Grandchildren use to come every week to visit their Grandad but as my husband deteriorated it was upsetting for the children. They wanted to remember their Grandad with all the happy memories they had.

    Sadly my husband passed away a year ago and the void in all our lives were filled with so much love and fun we had as a family.

    This is such a wicked illness and it throws so many things at us to deal with and we can only do our best with love, compassion and taking each day as it comes.

    To all of you going along this path, I send love, understanding and may you all be granted the strength to get you through each day.

  11. POPPY67

    POPPY67 Registered User

    Mar 5, 2010
    i so understand how you feel i cry everyday not one day goes that i dnt cry !! i dnt say goodbye now as this causes distress on both parts i justb say good night !!
  12. julieann15

    julieann15 Registered User

    Jun 13, 2008
    I too feel guilt that mum has lost her freedom and is in the care home near me but I have to remember the chaos that was her living her alone. The days when we rang the bell and she opened the door looking so confused and frightened. The numerous calls about something she wanted to talk to us about but couldn't recall, the fire alarms being set off, the untaken medication etc etc

    She is now well cared for and happy- she sees me and her grandchild 4/5 times a week.
    It is hard kicking that guilt monster into touch but you really need to try- concentrate on the positives??

    Love Julie xx
  13. whiteoleander

    whiteoleander Registered User

    Apr 11, 2010
    Thanks for all your kind words.
    Its so sad to hear all your stories,such a cruel disease.
    It makes me feel a bit less isolated to know that Im not the only one feeling this way.
    It makes me sad to feel this way all the time as I know the one person I used to turn to was my mum. I could always rely on her.
    Sadly thats not possible now. I know I should count myself very lucky that we found such a lovely home for mum so close by. When you hear some of the ordeals people are going through in similar circumstance it makes me realise how lucky we were.
    To try and concentrate on the positives Im grateful to have such a lovely family, I never would have thought something like this would bring us closer as a family, but for all the heartache we've been through in the last few years there has to be some sort of silver lining x
  14. PostTenebrasLux

    PostTenebrasLux Registered User

    Mar 16, 2010
    London & Oxford
    Hello Whiteoleander
    (such a lovely plant too!)
    I am thinking of your daughter of 11.

    My father died on my 12th birthday. In a tragic sense, his death was one of the greatest gifts he gave me. Why? I grew up fast, learned about compassion, practicalities, fending for myself and looking out for the vulnerable. It enabled me to relate to all ages and to put my place and role in life into a better perspective.

    I would recommend you discuss with your daughter what you are likely to encounter at the next visit and what she could do to be helpful. Engage her in her grandmother's care rather than exclude her. Your daughter might help with washing grannie's clothes and bringing them back, baking biscuits to take on your visit, sing for her (bringing a cd along of granny style music), massage her hands, comb her hair, help her drink her juice, read from the newspaper. Your little one will soon be grown up, will understand what you are going through and you are both bonding and creating valuable ties for when she is going to hit puberty in earnest.

    There is never a right time for bad news. You will draw comfort no doubt from having a little one understanding you when you let off steam etc.
    Best wishes to both of you and the other children too.
    United you Stand!
  15. welshchick1968

    welshchick1968 Registered User

    Dec 29, 2009
    I am in a similar predicament to you. My mum is 62 and has had this awful disease for 3 yrs. Her health has deteriorated to the point lately where we are having great difficulty looking after her at home. My dad is the main carer, but he has health problems. I work full time and my sister has 3 small children, although we help as much as we can.

    We are currently looking for respite care for her, but, as a qualified nurse, I know that we cannot keep her at home much longer - things are starting to get unsafe, especially as she has started to have some fits.

    My sensible, professional head tells me that residential care will be best all round, but as a daughter I cannot help feeling that I am letting her down. I always told her that I would never put her in a home, which I know is unrealistic, but it is hard getting past the thought that she needs someone else other than me to look after her
  16. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    #16 lin1, Apr 17, 2010
    Last edited: Apr 17, 2010
    Hello Hodsoj and welcome

    I think your 11 yr old daughter just wants 2 remember her nan how she was. so I wouldn't try 2 make her go.

    It might be a good idea if you make your own thread, you will get far more replies, and will have the chance 2 get 2 know us better. it's easy 2 do when you know how. click on the forum you want ie support 4 people with dementia, the lounge,ect. then click on new thread. hope this helps.
  17. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    Hello Whiteoleander.

    welcome 2 TP.
    Hope you find TP as helpful as I have.
  18. Aly

    Aly Registered User

    Apr 21, 2010
    Sutton Coldfield
    Hi there, I know exactly how you feel with your Mum going into a home. My mum was diagnosed at 60 and has now just had her 70th birthday - she is nursed in bed, cannot speak or move - I have two children under 12 so had no alternative but to let mum go into a home. It is a wonderful place with amazing, caring staff. Despite this I too feel guilty when I am away from her. My advice is to try to talk to someone regularly about how you are feeling - bottling it up can result in unexpressed grief that can cause depression. I explained (with the help of a MIND leaflet designed for children) about dementia and what my children would encounter at the home with other residents and with their Nanny - it helped tremendously and I am so proud of their ability to visit for a long time. However, there came a point when it became so upsetting for the boys that I gave them the choice to stop visiting in order to preserve their precious memories of Nanny - they no longer visit on a regular basis but talk about her. Encourage your daughter to let you know her thoughts and feelings. Bless you xx
  19. seedling

    seedling Registered User

    Feb 3, 2010
    Remember the good memories and it helps


    My Mum has been in a nursing home for 6 years (since she was 68)and has deteriorated through the years. Even though I still have a good cry when I leave I try and remember the good parts of our visits.
    Like the time when we had a tea party in her room and had sandwiches without the crusts(she hates crusts) and cream cakes. We made a terrible mess but it made her laugh! The time when we made her an instant coco and used spray cream on the top. Mum blew it all over us as we forgot she always blows her hot drinks to cool them.Even now she has trouble swallowing we make sure she has something out of the ordinary to drink or soft food to eat.
    The wheel chair race in the garden with her friend....and so on.

    I can understand everyone feeling guilty about our dear ones being incarcerated in a home, we just have to live with these feelings and look to the happier moments we all have left with them.
    As for the children,well the decision is a hard one and it depends on the family and them. My neices and nephew went to the home once and have never been again.Its sad for Mum but they have their memories I suppose.
    Keep smiling even when you feel sad!

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