1. Expert Q&A: Living well as a carer - Thurs 29 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 Thursday 29 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.

  1. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    My husband was diagnosed with early onset Alzheimer's April 2012 at age 55. I have looked after him at home for the last 7 years. He is now at the severe stage and no longer wants our children or grandchildren to visit. As soon as anyone arrives he wants to go home to his mums ( she is 85 and was diagnosed with stage 4 stomach cancer April 2018 and prognosis was she wouldn't see Xmas).
    We have not told him she is ill.
    After much consideration and professional input from GP, dementia clinic doctor, mental health officer and Social Worker it was recommended that nursing care was best option for him.
    We now have funding from 1st April and a care home has accepted him.
    We are going to visit the care home on Wednesday and social worker is visiting tomorrow to finalise the move.
    I am now overwhelmed with guilt and feelings that I am being selfish not keeping him at home.
    He constantly wants to go home to his mum. he doesn't let me speak to anyone doesn't know any of our 4 sons, says he doesn't have children. Sometimes asked me who I am. Up during night pacing for hours. Refusing to use toilet pan peeing all over house. Now only doing a poo once a week which is a fight to get him on toilet. He has become aggressive when I attend to any personal care, pushing me and threatening to kill me.
    As the date for the move becomes reality I am struggling to go through with it. My sons and their wife's all agree it is time for me to get my own life back.
    Has anyone else experienced this .

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  2. canary

    canary Registered User

    Feb 25, 2014
    9,903
    Female
    South coast
    Big changes like that are always overwhelming, but honestly, he now needs a whole team of people who are trained to look after him - not just one frazzled wife, however loving and willing. It is not your fault that he has dementia, so no need for guilt. If he had appendicitis you would have no hesitation in sending him to hospital, because you know that it is not something you can deal with - this is the same.

    People around seem to thing that "putting someone in a care home" (I would never use that expression) is an act of failure - it is not. It can be the very best thing for them. Saying that it is time to get your life back is true, but it makes you feel that he is only moving there because of you - not true. He is moving there because it is what he needs now.

    You will not be abandoning him, you will be sharing the care. You wont be doing the hands-on stuff, but you will be there for him, being his advocate and voice when he has none.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,149
    Kent
    All the more reason why residential care is the best option @Dosey. In addition your family agree too because they realise you are unable to meet your husband`s needs as his sole primary carer.

    Once he is settled and when you visit you will be able to give him the quality time which is now impossible, I hope the guilt will go

    No one decides on residential care lightly. It`s a heartbreaking decision. Saying that, it`s a heartbreaking illness and we can only struggle to find the best compromise we can, which sadly often means residential care.
     
  4. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Thank you all for your support and kind words.
    Took husband to our caravan Friday to Tuesday. Was a bit more settled due to us being on our own. Started to feel guilty, thinking maybe I should keep him at home. On the Sunday afternoon I took him to the owners lounge for a coffee, it was quiet and he appeared fine. Another owner came over to chat, with in 5 minutes he became angry and agitated wanting to go to his mums, swearing and try to leave.
    The Social Worker came on Tuesday afternoon, he was non responsive, my daughter in law and 7 year old grandson had come in to support me. He didn't even know them, this upset my grandson who said it's me Granda Jack, he just looked through him.
    While I was speaking to SW he was growling and making faces then smiling at daughter in law.
    Yesterday my son Mark and I visited the care home. Appears friendly and person oriented. I recently took early retirement from my own employment as a residential childcare worker after 23 years service, due to my own ill health and husband needing 24 hour care, so know what to look for in a care setting.
    We were happy with the placement and have accepted this. Still doesn't make the decision any easier.
    We now have a date to move in, Tuesday 2nd April, my family and friends will all support me.
    My next dilemma is how and when I tell his mother, brother and two sisters. We visit his mother and sister who live together on a Thursday (today). Husband doesn't know he is going, been told there is no point telling him until we get there, so don't want to say anything this week. Should I wait until a couple of days before the move, this is another stress on top of everything else.
    Sorry for such a long post. I am really in a bad place, not sure what I am doing or what is for the best. My sons have told me not to worry about what they think, my health is what matters, and that I am not making this decision lightly.
    Rose
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    It depends on your relationship with his mother and siblings, and how you think they will react. But I would probably not tell them until he is actually in the care home. That may sound overly cautious but you don't want any of them speaking to him and getting him agitated and causing greater upset. When my mother moved to a care home a year ago I only told her best friend (because I knew I could trust her), I didn't tell any of her other friends or her cousin until she'd moved. My mother didn't know she was moving and I didn't want anyone going round in tears and causing big dramas.

    So do whatever will work best for you and your husband. The other relatives are of secondary importance.
     
  6. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Thanks Sirena
    I do have a good relationship with them. Unfortunately mother in law was diagnosed with stage 4 stomach cancer last April diagnoses was she wouldn't see Xmas she is 86 in July. She thinks he looks great, we visit once a week His sister has bio polar 56 lives with mum who cares for her another issue when mum passes.
    His other sister works full time and has an illness with 5 years average life expectancy and trying to support mum at home.
    His brother doesn't visit him and hardly sees his mum, he is selfish only thinks about himself.
    Just worried they will not understand that I can't do this on my own anymore.. My own children would help but he doesn't want them, so sad as my husband and 4 sons were best of friends always together playing football, snooker, golf and going to football to watch their beloved team.
    Our house was the meeting place every Saturday night for takeaway and socialising for sons, daughter in laws and grandchildren, even when I was working a late shift. Now nobody can visit for more than 5 minutes before he kicks off.
    It is heartbreaking for us all. This disease is so cruel.
    Rose
     
  7. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    927
    Honestly I wouldn't tell them or even discuss it with them. When my mother-in-law went into care straight from hospital last year my husband and I did not discuss the move with anyone other than her daughter and she lived abroad anyway. We made that decision not to tell other family members or even her friends because to be frank I don't think they would have believed that she needed to go into a home.

    The decision we made was the right one for my mother-in-law's care . She needed 24-hour supervision and like you're describing she was aggressive and unpleasant. You are doing what's best for you and your husband don't let anyone else tell you any different. I told my mother-in-law's friends after the event I wrote to them all to tell them what had happened and why briefly she'd gone into care, the ironic thing about it was that in fact these so called best friends soon faded away and we never heard anything from them . Sadly she died a couple of months after going to care home I told them this and they didn't even acknowledge it
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Rose, please don't worry what they think about it. They will think whatever they think, you can't control that. People who aren't actually doing the care often think they know better and won't hesitate to tell you. But you are the one who is looking after him, you know how much he has deteriorated, and you have the support of social services and medics, who do not treat this decision lightly. You are doing the right thing so please don't allow them to cast doubt on that. Try to frame it positively - you are doing it for *his* benefit, as it will mean he gets all the care he needs from a dedicated team.
     
  9. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    @Dosey you don't need it to be any harder for yourself than it already is! When you have your husband settled (and doing that is your priority), could one (or all) of your very supportive children visit your husband's family and explain what's happened and that you are doing your very best for their dad? That would take the pressure of actually telling them off you, and they may be able to get their nan and aunties to understand the stress you've been under. Whatever you do, I hope it all goes well, and is not as bad as you fear
     
  10. Jill1966

    Jill1966 Registered User

    Aug 5, 2013
    9
    County Durham
    I can only speak after my elderly mum went into a care home in the autumn of last year. I understand completely that you may feel guilty but in time hopefully your husband will become familiar with his new surroundings and settle down a little. I know after years of worrying about mum and being her sole carer, her being in a home is actually best for her and enables me to become her daughter once more and not simply her carer. I hope in time, you will feel this way too.
     
  11. elvismad

    elvismad Registered User

    Jan 8, 2012
    289
    My elderly mum went into care in January this year. I miss her (she is over 100 miles away) but I know that she is where she needs to be (albeit not where either of us ever wanted her to be). She has constant company, is as safe as a frail old lady prone to wandering corridors can be, has her medication and meals regularly. All in all she is better looked after than I could ever have hoped to look after her on my own. She seems content , if confused, but is not distressed. I on the other hand, have yet to feel the benefits of this change in circumstance, as my mind is constantly on her and how she is doing. My weekly visits help me so see she is being well looked after but I sitll feel I have failed in some way and have abandoned her in her time of need. Stupid, I know, I had struggled to care for mum for over 7 years by the time she moved into her Care Home.
     
  12. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Thanks everyone. I will be able to visit 3 or 4 times a week. My sons and wife, children will visit once a week. So he will have a visitor every day. The home also have a good activity programme taking residents on outings. So we will work with them so he gets out as well as having us visit. We too can take him out once he has settled.
    Last few days he has become more agitated. Said to my daughter in law, who's that we ****, about my grandson(6). Later that day my other grandson (7) came in he was just sitting on the settee, when I heard my husband calling him a prick. The grandchildren are now getting scared, the 2 and 3 year olds won't go near him now.
    It's so hard as he was a loving Granda to the 6 of them.
    I know he has to go for the safety of everyone.
    Rose
     
  13. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,469

    Well said Canary
     
  14. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    Hi All
    Well today is the big day husband moving into care home today at 1.30pm. Two of my sons are accompanying me to the home with him.
    I have not slept for the last 2 nights totally exhausted.
    Visited his mother last night, she has not been great, sick all the time now in pain (stage 4 stomach cancer). Doctors been called out twice this week.
    His sister and husband came in while we were there. Husband just sat in a trance not responding. She asked how he was doing said he didn't want anyone around him or me anymore.. she asked if he was ok with me, I said not really, he is going into care, don't know how to tell your mum. All she said was aw, and left it there. I didn't say in was happening today, but at least I have sown the seed.
    Mum will not expect to see us again until week on Thursday as she thinks we are going to caravan tomorrow.
    Feeling terrible stomach churning, full of guilt, not told him, as he won't understand. I feel so deceitful, betraying the person I have loved for 45 years.
    I know once he settles I can visit him often, feels so wrong that I am going to try and enjoy live again without him.
    I so miss my grandchildren growing up, now that he doesn't want them around.
    How have others coped with this, will it get any easier.
    Rose x
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,903
    Female
    South coast
    (((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Dosey - you have a lt going on. I hope the move goes well today.

    Dont feel guilty, you have not betrayed your husband, the move is as much for his sake as yours. You will be sharing the care now, not relinquishing it. It will take you both a while to adjust, though, and for the knowledge to get from your head to your heart.

    Does his mum really need to know that her son has moved into a care home?
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    You haven't betrayed him, you are getting him the care he needs. I hope it goes okay today.

    I don't know if you have seen Kindred's thread on this board - "please don't throw me away, breaking my promise"? Her husband moved to a care home and has settled well, it's a lovely thread and may reassure you that it can turn out well.
     
  17. Lucianne

    Lucianne Registered User

    Jun 30, 2017
    54
    You mustn't feel any guilt and family members aren't in a position to criticise your decision. Having said that, I am just ten days ahead of you on this journey and I feel guilty and sad. My OH had three short respite breaks before going into the home permanently and it immediately felt different when I knew it was permanent but there is only so long we can survive on broken nights and not being able to leave their side, even when there are meals to prepare. I was advised to wait 3 or 4 days before visiting and then timed it so that I would leave when he was due a meal. The carer just said "your wife has just got to go and do a bit of shopping" and that seemed to work.
    Good luck and big hugs - we'll get there.
     
  18. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,473
    I also leave when my husband is having a meal, I just say I'm going to the toilet but instead I just leave, feeling very guilty, but I know he will forget I have been:(.
     
  19. Dosey

    Dosey Registered User

    Nov 27, 2017
    97
    #19 Dosey, Apr 3, 2019
    Last edited: Apr 3, 2019
    HinAll
    Went to the care home with husband at 1.30pm. Prior to leaving my 2 sons who were coming with me 2 daughter in laws and granddaughter arrived. Hubby asked for the toilet then when I took him he said when are they all going. Told him they were going and we were going out. Daughter in law wanted to take my car and let Mark drive us in their car. Said no I would drive. Put hubby in front seat 2 sons in back. He didn't even question why they were there. Arrived at care home he was oblivious to where we were going. Terrible situation to be in oldest son broke down as soon as we arrived. Had some tea and biscuits hubby was laughing felt so bad that I was leaving him. Stayed for 2 hours was advised to leave without saying goodbye. Broke down outside so did other son. Oldest son had to drive home. We were all crying. Other 2 sons distraught about today.
    Daughter in law has phoned twice. Hubby a bit upset but had dinner and dessert. Spoke to night shift he was in his pjs (has slept in his clothes for last 6 months). Was watching tv. Am a total wreak. Mark refused to go home is now staying the night with me. Now in bed can't sleep so stressed. Why did this happen to us, so want to go and bring him home. Is this normal. Xxx
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,256
    Absolutely normal I would think. We are not there yet. But the question hovers over me. I think it is the most difficult thing to have to do. Xxx
     

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