Guilt and resentment overload

Discussion in 'Recently diagnosed and early stages of dementia' started by jojo2018, Sep 28, 2018.

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  1. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Hello all,

    I hope everyone is having a good week, and finding some time and happiness for yourselves.

    I am really struggling at the moment with guilt, resentment, and conflicting concerns for my OH, myself and my MIL.

    My OH and I keep putting our lives on hold to care for my MIL - and I know that's the right thing to do - her needs are greatest and she is the most vulnerable. But sometimes I feel despair and resentment that it's affecting our lives so much - and start thinking that we should limit what we do. And then I feel so guilty and awful.

    It affects my OH physically and mentally whenever he stays with her, which can be for weeks and months depending on what is happening, sharing a small space and well I don't need to explain what it's like living with someone who has dementia on here. It's even started to affect me now - I keep crying all the time and vomiting randomly which I think is the stress. We miss our home and friends and cats and privacy and lives overseas which we haven't seen for 3 months now and we just canceled our flight again yesterday due to another issue (a serious one so it wasn't a choice, but I feel like this will never end). My OH said I should go back without him but I see what this does to him and can't just leave him here again (we've done that a lot over the years, taking it in turns to come back, but more often him). I want him to do less, but it's his mother! How can I think of suggesting he do less, how can she go through this alone? It feels cruel and yet that's how I feel.

    We have carers set up for medicine and food and for periods everything seems ok - but then something happens like the carers mess up or she has a new symptom - and we can't leave or need to come back. We've talked about a home - but she would be absolutely heartbroken as she loves her house and life here and honestly it would be more for us than for her at this stage, so that again makes us feel guilty. She's still mostly independent and with carers it is enough day to day, and she is actually happy most of the time.

    I'm sorry to complain when I know people on this forum have it far worse and I have so much respect for those of you that are full time carers, I don't know how you do it.

    Thanks for listening, J x
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Why do her needs have to take priority?
    OK, she is the most vulnerable, but her needs do not trump everyone elses.
    All the while that she is alive these crises will continue. It sounds to me as though she will soon reach (if she hasnt already) the stage where she needs someone with her 24/7, 365 days a year. Once that happens it is a choice between moving in with her permamntly, getting a live-in carer, or finding a nice care home. Even if you choose to live in with her or find a live in carer there will probably come a time when it is not enough and she will need care by a whole team of people, on hand, all the time. If you choose a live-in carer there will still be many times when you will have to suddenly cover.

    I would in all honesty start looking at care homes, find a nice homely one with good caring astaff and put her name down on the waiting list. My mum fought against moving to a care home with all her might, but it became inevitable. Amazingly, though, she thrived there. It took her a few weeks to settle, but after that she joined in all the activities, made friends (she had been very lonely in her own home) and was happy. I did not think it would happen. I know we all think that they are automatically going to be best in their own home, but actually its not true. A whole team of carers were able to give mum much better care than just me trying desperately to fire fight every constant crisis and being constantly stressed. It was the best decision I have made for mum - not just for me.
     
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    980
    Sorry but I agree with canary. I remember from your previous posts that you have a difficult situation with you living abroad and trying to juggle MIL and her needs . Eventually something has to give and it sounds like your health and sanity is about to.

    My MIL went into a home last month on an emergency basis but she won't be able to return to her own home. We just knew the time was right. She simply couldn't be left on her own and required constant supervision and help. Family members weren't prepared to help her anymore and to be blunt neither my husband and I were prepared to put our lives on hold for her. I would start looking for a home ,having carers 3 or 4 times a day eventually just isn't enough. Your sense of resentment will only get worse. Your husband might think he's doing what is best but both of you are entitled to a life of your own
     
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,093
    Toronto, Canada
    I agree with @canary and @Rosettastone57. It does sound like it is time for you to look for long term care. Your MIL's care needs will only increase. It is a difficult decision but in your case I think it is the right one.
     
  5. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,650
    North West
    It does seem that you could do with giving a care home serious consideration. Quite regularly on TP we read of people who eventually decide on a CH but not without a good deal of turmoil and then find the PWD settles in well.
     
  6. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks for replying and I hear what you are saying about the care home - I agree it's getting close to that time - if I think of all our needs and not just my MIL. She has said she would rather kill herself but her logic is also very flawed and she cannot see her own needs, which are increasing over time. It's so reassuring to hear you talk about the importance of our needs too. I have raised it with OH a few times but it always makes me seem so selfish in his eyes that I needed to hear it from someone else. I'm so glad your mum is happy there and that also gives me hope x
     
  7. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks, I appreciate the honesty and I need a little bluntness at this point because I'll feel more confident passing that on to OH. I'm sorry to hear you've gone through this too x
     
  8. VerityH

    VerityH Registered User

    Aug 21, 2018
    73
    My mum and dad never wanted to talk about going into a home - they just simply refused to contemplate it. Then disaster struck and we had to put dad into a home when mum had a TIA. Her dementia took a big dive after the TIA and there was no way they could go back home. After only a few weeks out of their own home, neither of them can even remember it. Yes, it will be stressful and there will probably be resentment from your MIL to start with, but I would say it sounds like the best thing for her. Either that or a live in carer, but if you are abroad I would say a care home would be a better decision as there is a team looking after her rather than one person who could possibly let you down/become unavailable. I appreciate what you're saying about not wanting to totally give up your lives for your MIL. It is always a terrible thing to admit, but you are a human being and we only, after all, get one chance at this living thing. I know my mum wouldn't have wanted me to completely sacrifice myself for her (my dad's a different matter, let's not go THERE!!!), so whilst I feel guilt every day I know I'm doing the right thing.
     
  9. Slugsta

    Slugsta Registered User

    Please don't ignore your own needs, you have an equal right to a life. No, your MIL doesn't want to go into a CH - but she is not able to understand her situation, so that is not a reasoned (nor reasonable) decision. You and your OH need to consider your needs and wants, while you are still young and fit enough to do the things you wish to.

    Please see someone about your vomiting. Yes, it could be down to stress - it would hardly be surprising! - but it could be something more serious.
     
  10. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks,
    Thanks for sharing Verity. I think my MIL would absolutely feel the same, if she understood the situation. She always forgets when we have been here (perhaps denial) and constantly tells us to go on and live our own lives (then asks us to stay and cries when we leave) so I see it's a real struggle for her too. I sincerely hope we make the right choice at the right time. And best of luck with your own situation - I'm sorry you feel guilty and while I absolutely don't think you should, I am feeling it myself so totally understand why! x
     
  11. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks Slugsta, I really appreciate your words - I think we've both burnt the candle at both ends between work and the situation here - but I'm being more honest with myself about what we need and I am making headway with communicating that to OH - even just today I have shared some of the feedback on this forum which really helped because I had a 'back up' on what I was saying. It's still hard saying out loud "what about us?" when someone is so poorly and vulnerable. But I'm finding peace with the idea of a balance - looking at the needs of all 3 of us - and accepting that this will involve choices that yes might be selfish in part, but will be more balanced. I think so anyway. I feel better than I did earlier. Thanks again x
     
  12. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks for your advice, and I do think you're right x
     
  13. jojo2018

    jojo2018 Registered User

    Mar 30, 2018
    98
    Thanks for sharing that - I do have hope from hearing of people who settle in well despite not thinking they will. My MIL is SO against the idea but she hasn't tried it so might even like it. x
     
  14. Viva

    Viva Registered User

    Oct 10, 2018
    14
     
  15. Viva

    Viva Registered User

    Oct 10, 2018
    14
     
  16. Viva

    Viva Registered User

    Oct 10, 2018
    14
    Hi there

    I'm new to this forum but have been reading people's experiences for a while now. I can really relate to what you are saying Jojo2018. I too live abroad with my husband. It is his mother that has recently been diagnosed with mild dementia and we are currently awaiting a brain scan too. We see her roughly four times a year and in the past have had her stay with us abroad for three weeks and that includes fetching her from the UK and taking her home again. She is 85 years old and lives alone. We have just spent three weeks staying with her at her house in August. We knew that she had deteriorated mentally and she no longer wants to go out with us. In the past she would go on days out with us etc. Now we find her often with her head on the kitchen table asleep during the day. She doesn't eat properly and is thin and frail but insists she is okay. When I cook for her she wolfs everything no problem. She was assessed by a psychiatric nurse recently at home and he said she was slightly underweight but needs to eat more. She is very good at lying to people about how she is. Her self care has gone downhill totally and in three weeks of staying with her she had a shower once. She doesn't want to leave the house and we had to force her to go out to get a haircut after a row. She can be very manipulative and verbally nasty. The neighbours are very caring and offer to help her go to appointments like the chiropodist but if she does go she will then say horrible things about them afterwards! She has started doing some bizarre things like staying up very late at night and washing pots that have already been washed. Sometimes she gets dressed at midday and often has her clothes on back to front. At other times she's very lucid and and dresses appropriately. Every day is different!

    She doesn't want any kind of help at home. The consultant she saw recently asked her how she would feel about carers and she flatly said there is no way she'd have anyone coming into her home. What gets me is that she has started ringing us up in tears or on the brink of tears saying she's lonely. She won't go out and do anything at all which will bring her into contact with people. She has not led an independent life and had no friends of her own when she was married. She distrusts people and is quite paranoid generally and always has been. The neighbour next door goes to coffee mornings at the local church which is ten minute walk away and the vicar even lives in her road but she won't go to anything social. So she guilt trips us instead. She has told my husband several times that all she wants is for us to return to the UK and live in her house with her(!) Talk about selfish... However, I do care what happens to her and I am fond of her but she just won't help herself. I hope I don't sound too resentful. The only support we have in the UK right now is the Memory Clinic and my husband's brother's wife who is good to her and will take her to appointments. His brother however is disinterested in visiting her and would like to see her in a home ideally. Anyway, any thoughts would be most appreciated.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Hello @Viva and welcome to Talking Point

    Your experience is very similar to my mine with my mum when she was trying to live "independently" at her home. She too wasnt eating or drinking much as she would forget, wasnt washing/showering, couldnt always remember how to dress properly, had chaotic sleeping patterns and bizarre behaviour. I recognise the nasty comments. The lying is not actually lying because she will really and truly think that this is the truth - and it can change on a sixpence! She too, completely rejected carers as she was completely unable to understand that she had something wrong with her and so needed them. My mum became paranoid and distrusted the neighbours and she even wanted me to leave my husband, give up my job and go and live with her (was never going to happen)!

    I was at the stage where I was pulling my hair out with worry and I expect that you are at that stage too. My mum was too paranoid to allow me POA, but if you can get your mum to agree to this (you dont need to book an appointment with a solicitor, you can download the forms and do it yourself) and sign it will help you sort out the muddle. Eventually there was a crisis - mum had a TIA and ended up in hospital. From there she went into a care home and lived there contentedly, to the end.

    Im not sure that I have much in the way of advice for you, but I have tons of empathy and I can only say that it did get sorted for my mum in the end.
     
  18. Viva

    Viva Registered User

    Oct 10, 2018
    14
     
  19. Viva

    Viva Registered User

    Oct 10, 2018
    14
    Hi Canary

    Thanks for your message. The PWD is my mother-in-law. My own Mum died of cancer 25 years ago. My husband and I have POA for her already. We got it three years ago when she was still with it enough to understand. We would not get it now I'm sure. We have POA for finances and health.

    I suppose my problem is that I find it really hard being with her these days. She isn't demanding as such but she won't accept help from us or anybody else but at the same time complains how lonely she is. I had parents who never demanded anything from us and my father who lived until he was 93 was very independent right up until he had to go into a nursing home. He had friends, hobbies, drove a car, read a lot etc. He didn't suffer from dementia though and was sharp as a tack until he died of natural causes. I just find it really hard not to resent her for not doing anything to help herself. She complains about her hearing but won't get a test or allow us to take her for one. She doesn't want to go out and spends hours 'talking' to the neighbours cat across the street from behind her living room window(!) When I stay with her she inhabits such a strange world I find it really hard to accept. I know that sounds awful but she drives us both round the twist. Her next-door neighbour is lovely and has invited her for a cup of tea before but she won't go. When we visit we spend an hour having a brew with the neighbours. They're a nice couple but my MIL only slags them off. This is her personalty and not the dementia talking! I have to remember to be kind but I'm finding it a struggle and wish for her sake she had some human contact during the day. I totally relate to what you said about your Mum wanting you to leave your husband and go and live with her. That is really selfish argh!! I know I will find a way through this and it is not even my Mum but I do care but I seem to have this inner conflict going on! Thanks so much for your help. It's just good to hear from someone who has been in the same kind of predicament.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Im glad that you have POA @Viva - that will help immensely when the time comes

    All the behaviour exhibited by your MIL (and my mum) are the result of dementia - and if it was part of their previous character traits the dementia will have exaggerated them. People know that dementia causes problems with memory, but unless you have experienced it most people do not realise that bizarre behaviour patterns are part of the disease too. The complaining about things, but not doing anything about them is absolutely typical. They are just not able to do anything about their problems and are often completely unaware that are unable to do this - and, indeed, are often completely unable to comprehend that they are having problems at all (its called anosognosia), yet they know that Something Is Not Right, so if its not them it must be the carers fault, or the family, or the neighbours or...... The logic patterns and the way their damaged brain is constantly trying to square this circle results in some truly bizarre thought patterns. Often mum would come out with things that totally baffled me. As an example - mum was constantly getting into arguments with her neighbours about the bins. When the neighbours put out their rubbish for the bin-men and put in on their shared drive my mum thought that it was a delivery for her that the neighbours had ordered. She would bring it into her home and tip it on the floor and then be absolutely furious that the neighbours had ordered all this rubbish for her! It was no use telling her that the neighbours had put it out for the bin-men because she was adamant that they had ordered it specifically for her and had had it delivered to her just to be nasty. In reality they had been great friends before the dementia.

    The nastiness, the wanting something done, but not doing it, the lying (not actual lying because they really believe it - its called confabulation), the delusions, obsessions and loss of empathy (which looks like selfishness) are all par for the course. Their world narrows and, due to the loss of empathy, everything becomes about them. I am telling you this so that you can understand that your MIL is not doing this on purpose. It doesnt miraculously make it easy to deal with, but I found that if I could understand things it sort of took the edge off. Have you come across Compassionate Communication? It is hard to do in the heat of the moment, but I found it did help when I was able to follow it.
    https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710
     

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