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.

I'm shocked at how I feel about my parents' dementia sometimes

Discussion in 'I care for a person with dementia' started by Nichola C, Apr 28, 2019.

  1. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    I am so angry about my parents' dementia......there I've said it...
    I admit to using this forum as a form of catharsis and therapy, but I don't really feel able to talk much about it on a day to day basis. I have a husband and younger children at home, and older children at University, all of whom need different things from me...I work full time in a pretty intense job which demands 12-14 hour days over 6 days a week, and quite frankly I don't want to bore people with my problems...!...
    About 2 years ago it became apparent that something was wrong with my parents who had been living independently in their own home about an hour and a half away from me. Their bank manager called me and asked me to come up for a meeting as she was concerned about their finances. This was the start of a pretty rough period of time, during which I have had to arrange for them both to be assessed at the Memory Clinic, fight for Social Services support, arrange for food deliveries, negotiate with Dad about giving up his driving licence and selling his car, deal with Mum's nocturnal wanderings and the inevitable involvement of the Police, help her through a hospital stay (after a broken hip) and her subsequent admission to 'emergency residential care', and ultimately fight social services (tooth and nail) to allow them to relocate to my home town, so that I can be closer to them and help them through this period of their lives. The situation now is that Mum is in a very good BUPA care home near my place of work, and Dad has a 'Supported Extra Care flat' in a private complex about half a mile from her, and is just about managing to cope on a day-to-day basis with his own personal needs, as he is fed well at lunch in the complex. I manage to see him twice a week, and I take him to see Mum at the weekends.
    The brief outline I gave above tells nothing of the additional complexities we've all been through. The development in my father of Grand Mal epilepsy (an horrific fit one Sunday afternoon in front of my 9 year old daughter, when we all thought he was dying and had grabbed the defib from the village hall, whilst we waited for the ambulance to arrive) and the fact that his particular form of dementia can lead him to 'misplace' faces and relationships. He accused me of having an affair with my husband 'under his roof' (he clearly thought I was my mother) and kept writing me obscene notes which I would come home to find, after work. He thought on several occasions that my home was his, and accused my husband and I of trying to sell it from under him...this was when his own house sale was going on and he was living with us for supposedly 2 weeks but which turned into 9 months... During this time he was involved in an argument with a 13 year old boy at the local park whilst walking his little dog...the boy was teasing my dad and this didn't go down well...the upshot was that the boy punched my father in his face, causing him to fall to the ground and break his hip. His head hit the road surface so hard he had a number of brain bleeds, and suffered 'life changing injuries'....there is now a criminal case pending, but my father can remember little of it...(perhaps thankfully)
    Meanwhile my mother, once installed in her new residential home, has just degenerated. I had hoped that she might rally a little, her previous emergency placement was awful and she was desperately anxious. The new home is bright clean and well staffed with people who genuinely care about the residents and who try so hard to look after them well. My mother however has become mean and suspicious, and over the last 9 months has simply degenerated. She cannot remember anything of her previous life, not me and my sister, and sometimes, not even Dad either. Initially she was allowing the carers to wash her and dress her quite nicely, but now she sits in a disreputable nightdress all day and rarely gets out of bed...she is horrible to the carers, rude and abusive. I know this is the illness, but I am so angry about it all....I want to be one of those amazing people who visit their loved ones, bring joy and happiness, and I really do try....I always take her chocolate (the only thing she seems to love anymore) and flowers, which seem to cheer her. I have made her memory books of photos and cuttings from our earlier lives, and take her anything I think she might like. But in my heart it depresses me so much....it hangs over me each week, that I have to visit, have to collect Dad and take him to see her, and along the way have to remind him that it is his wife we are going to see not his own mother.....
    If I am really honest, I feel that my mother has gone...it is just a shell that remains of her...I see her getting less and less of who she was, and I have such a complex mix of feelings...I'm angry about it, and sad that she is changing, and sometimes I even wish it would just end....and the inevitable would happen. That makes me feel so disgusted and ashamed of myself for thinking this about my mum....My father at least still remembers more of himself and his past life. He is still the person that he was an I fight everyday to help him keep that part of himself. It is hard, and I find myself watching for any further decline in his manner and memory. Logistically he has a little money left from the sale of his house, which pays the (very high) monthly service charge on his flat. It will run out at some point, and then I will have a whole other set of horrible decisions to make...what to do, how to fund it, where he is to go etc...My sister visits them both occasionally, never telling me when she is coming, and then e-mails me a whole set of comments and criticisms about what I need to be doing for them. That's always a hard thing to swallow!
    I am sorry to have written so much, and I don't expect that anyone can help me other than sympathetic support, but I didn't feel able to say some of the things I have said here, anywhere else.
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    All I can say is I'm sorry it's so hard and I understand your anger and frustration at the unfairness and total lack of support and understanding from others.

    Welcome to Talking Point. You'll find understanding here.
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Oh my goodness. A horrific time you are all having and have had

    Can’t find words, can only offer to wrap you in a virtual blanket full of hugs as I think you really need some
  4. Beate

    Beate Registered User

    May 21, 2014
    You would probably benefit from some form of therapy or grief counselling to deal with the mental stress. Have you seen your GP about it? Don't suffer through this silently.
  5. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    You could have been writing about most of the 'stuff' I went through; it feels as though you lurch from one crisis to another and are never in control. All I can offer (apart from huge hugs and empathy) is that you have to remember that YOUR family comes first. They will be here when mum and dad are gone.
    Forget about third parties offering 'advice' - what do they know about the day to day crises that you deal with? They don't, so the only person getting upset about them is you. Ignore them.
    Carer breakdown means that no-one is looking after your parents. Looking at it from a different perspective, you don't have to be the one in charge... If you want to you can absolve yourself from all responsibility (yes, I know, guilt, duty, etc. etc.) but that is an option.
    Don't feel disgusted with yourself - none of us on here are one of those wonderful people that cope, deliver chocolates to their loved ones and (the women anyway!) manage to have their nails done and their make up on just so. Most of us had a haircut six months ago, are worn out, worn down and half demented ourselves.
  6. father ted

    father ted Registered User

    Aug 16, 2010
    Your post reads like a maelstrom of terrible, distressing events and you are caught in the vortex. It’s like rapid machine gun fire boom, boom ,boom.

    Is it any wonder you feel the way you do? You are dealing with things head on. Each incident upsetting and unexpected in its own way and seemingly having no time to recover in between. You are getting no support from your sister and with children they naturally want your time too. As Beate says counselling may help. It benefitted me definitely even though I just ‘talked’. That’s why posting on TP is so helpful because you can be totally honest in anonymity. There is such a release in sayin* how you really feel.
    You are under alot of pressure be kind to yourself. X
  7. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    I’m sorry you are going through this it’s so hard having one person with dementia never mind two. I don’t know how you are coping and working full time it’s so very difficult! You have done such a lot for them nobody could’ve done more. Look after yourself. Sending hugs xx
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    You have been through such a lot with this beastly disease, and I don't think you should feel disgusted or ashamed of your feelings. When someone has dementia to the extent you describe (I do know what it's like to witness it), when their quality of life is so,poor and every shred of dignity has been stripped away, why would you want them to go on?

    When my mother's dementia was advanced enough that she took virtually no pleasure in anything any more, no longer knew any of her family, and had become doubly incontinent, I often wished it would end. I knew her former self would have been so horrified at the pitiful shell she'd become. I felt no guilt for wishing she could slip,peacefully away - I knew it was what she'd have wanted for herself.

    It might help to ask yourself what your mother's former self would have said, and what she'd have wanted, if she could have foreseen the future.
    Sending you all very best wishes.
  9. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    Thank you so much .....I know there is nothing anyone can do...but it is real comfort to read your thoughts.
  10. istherelight?

    istherelight? Registered User

    Feb 15, 2017
    Dear @Nichola C
    Your post was so heart felt, and touching as well. What a tough time for you. It must seem never ending.
    As @Fullticket says, third party advice can be ignored but maybe third party thoughts would give a different perspective?
    You come over as a high achiever, a highly organised person, able to cope with most of the things that come with a busy, stretched life. BUT dementia takes no prisoners and, as a number of TP members have said, it will take and take. It will wear you down. Only you can decide how much you can continue to cope with.
    Forget the "amazing person" idea as dementia can totally scupper all our best efforts. If we didn't love our PWDs maybe we could just stop visiting, but love keeps us going back for more. And duty, too, and our own perception about what our loved ones need.
    So, ignore this if it is inappropriate, these are just thoughts.
    Does your father enjoy/benefit from seeing your mother? Do you? This is precious time and, no matter how much you love your mother, you deserve quality time and (dare I say it?) even fun time with your husband and children. I'm afraid I became consumed with my mother's dementia and it nearly broke me, so I speak only with compassion. Would fewer visits to your mother be detrimental to her or your father?
    You obviously need to help your Dad but are Social Services prepared to step up to the plate? It sounds as if he will need full time care before long and that this will need funding by SS so the responsibility will be theirs. Without funding, you cannot do this on your own.

    It's so difficult, isn't it? Love complicates everything but I found the lack of support was the real killer. You just get landed with everything, with no experience and no training. TP was my lifeline and I hope it helps you.
  11. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    Thank you all so much for your kind, supportive and (most significantly) non-judgemental words...I cannot express what it meant to log back on just now, after having splurged all that (above) out onto the forum.....and to find all your amazing supportive posts....Thank you all...I'll admit I'm crying right now...you know how it is, once someone is nice to you, everything starts to unravel a bit! I think I will try to find a dementia support group locally, once things ease up a bit at work....as I can see I need to talk it through a bit. About 10 years ago, our house burned down and we lost everything we owned, and it took me about 3 years before it hit me.....and I had a bit of a breakdown...counselling definitely helped me then....I think I always judge problems against that, and so wasn't letting myself think this was a big deal.....Thank you all again...
  12. Nichola C

    Nichola C Registered User

    Apr 28, 2019
  13. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    Dear "is there light"
    Thank You.
    I would love to be able to give myself a weekend off more often....in fact I didn't go to see Mum last weekend, as we had promised to visit my husband's parents instead and it took the whole weekend....but the guilt I felt afterwards was crippling. I really do see what you are saying, and I know I'd be giving someone else the same advice, but I am struggling to take my own advice! I will try harder to ease up on myself a bit...it really does help to hear it from people outside the situation, like you guys. My husband is so lovely and supportive, he just supports me in everything I say I need to do, and never queries things...He is very good at passing the tissue box..bless him!
  14. istherelight?

    istherelight? Registered User

    Feb 15, 2017
    lots of (((((((((hugs))))))) xx
  15. Chelle52

    Chelle52 Registered User

    Oct 20, 2016
    Hi Nichola C
    I just want to say that I feel for you and what you have been through . I'm going through difficulties with my own parents - mum was diagnosed with mixed dementia 2 years ago and it's becoming increasingly obvious that dad has some form of dementia too . Life is hard for me and my sister and I know it's going to get harder and I too have a full time job , 2 grown up children and a grandson . There is no easy solution for any of us but I find this forum helps when I'm having a bad day (today!) as it helps to know that there are others going through the same thing ( and much worse ) my heart goes out to everyone coping with this terrible disease . Take care
  16. istherelight?

    istherelight? Registered User

    Feb 15, 2017
    Some of these things are technically easy to say, but I totally empathise. You do have to find your own way but you matter too. And a lovely husband is a wonderful gift (I have a wonderful husband too!) xx
  17. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    While my circumstances are different I can very much relate to your feelings of resentment and anger about the situation that dementia creates. And like you I feel awful for feeling that way. We are however dealing with something that is both physically and emotionally extremely demanding. As others have said, I would very much recommend getting support from a counsellor and talk to your GP if you haven't already. My experience of counselling is that it does help a great deal though it can take time to see the full effects. You've certainly had a lot to deal with!
  18. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    thank you so much Rob. It has amazed me how many people are coping with the help of this fantastic forum. Thank you for your kindness and the time taken to reply....I will look into counselling...
  19. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    Thank you Chelle for your kind words. I agree that it does really make such a difference to know that there are others out there just the same as us....I go to work each day and never talk about it, as work is so busy and people are so focussed on other things...we stop seeing each other as people at my place of work because we are so busy....its not a healthy environment. Knowing that all of you guys are out there coping with the same worries and stresses that I am does really help....there are times you feel like a freak for feeling the way that you do..( I do anyway) and your kind posts all make such a difference..thank you for taking the time to post to me! Nichola
  20. Nichola C

    Nichola C Registered User

    Apr 28, 2019
    Thank you Witzend for taking the time to post back to me...sadly I think that Mum would have rather died than ever have been placed in a home...its one of the things I feel most guilty about...but she kept running away from home and the police were getting concerned...she had to go into emergency care or be sectioned....there wasn't really a choice.

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