1. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    I am trying to put myself first as I've got a baby to look after, I'm trying to protect myself emotionally and not let myself descend too far into depression. I'm finding it so difficult to be stoical, to find time for myself and look after my body. I know my mum wouldn't have wanted her illness to wreak havoc on my marriage, family life, career, social life, confidence, worry levels but neither she nor I can stop it happening.
  2. angecmc

    angecmc Registered User

    Dec 25, 2012
    Difficult one this one, so hard not to upset people, I am with Lisa on this mainly because I was so involved in caring for my Mum alongside my Dad, I didn't notice my young son slipping into serious depression. He didn't feel he could come to me as he knew how much I had on my plate with Mum. He eventually had a breakdown. He is ok now and I have vowed that I will never let that happen again. Mum is in a care home now as she became too violent for us to deal with, I am still very much involved in her care, but she doesn't come before my own children now and she would not have wanted that anyway. I have also said to both my Sons that if I get dementia, they must put me in a care home and I do not want them to visit me on a daily basis, regardless of what I might say if it happens to me at a later date, I am aware that I may be saying different things if I am unlucky enough to suffer this curse of an illness, but now I am of sound mind, they know what I would really want from them.
  3. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    I'd have to agree with this. I don't have any children but having experienced full time care for my father who is in the latter stages of his journey, it'd be the very last thing I'd ever want for my children or for any other relative or friend.

    In fact, I think it's quite selfish to expect that of someone, and I certainly won't be bringing any kids into this world with the intention that one day they'd provide care for me, no matter what that should mean for their own lives.
  4. Margi29

    Margi29 Registered User

    Oct 31, 2016
    I too totally agree with you. Awful disease, I don't want my lovely daughter ever having to cope with this. Hopefully she may visit me if I get dementia occasionally, but there again if I didn't have a clue who she was, why put her through the trauma ??
  5. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    I made my choice, I didn't go into it lightly, but I didn't know what it really meant. If I'd read this forum first, I doubt I'd have made the same choice

    Yes, a PWD may "need" someone, but that doesn't have to be at home killing the carer, the stats are pretty awful, 40% of Carers die before their caree (I read that a few months back, but didn't note the reference).

    No time to look after our own health, disrupted sleep, stress, anxiety over getting it "right". Personally, shoulder surgery is being kept off the table because I have to care for mum :eek: it took me 5 months to even register with a GP about my knee & it's been a further 6 months with no treatment as I don't have time to chase it up.

    Surely, if the definition of love means putting that person above yourself, then expecting someone to put their life on hold, make themselves ill, or even die while trying to provide care, that's not love, that's control.

    I know my mum, she would have withdrawn, not engaged & given up in a CH, I couldn't live with the guilt of not preventing that. Instead, I've sold my home, with no chance of buying another, so will be homeless. I've left a very competitive field of work, which I won't get back into at that level & friends don't understand that I can't meet up, so have fallen by the wayside.

    We do this for our own reasons, when someone is honest enough to say, "don't do it", because they know the impact, surely we should support them, not make them feel even worse.

    Personally, I'd like to thank you Lisa, for your honesty, I hope that over time you find a way to overcome the negative feelings. As AnneM said, try to get counselling to help you through the emotional aftermath, don't beat yourself up. We do the best we can at the time, with the info available to us at that time. You can't change the past, only the future.

    My youngest is a kind soul, I know he wouldn't think twice, if I needed help, he'd just give it. Having spent this time with mum, I've told him, point blank, in plain English. Do not do it.

    Yes, other cultures look after their elders. But, the elders look after their grandchildren. It's a cycle of generations. We do not have that culture. Grandparents "help out", but do not see it as their purpose. You can't pick out the bits you like & ignore the rest

    I would say, read: Hard Feelings, Becoming my Mums Carer, How Bizarre, then make a choice, with your eyes wide shut.

    It's not easy. It's a no win scenario, it's thankless & it's only going to get worse. Help is dangled like a carrot with vouchers you can't use, respite that you can't book & support that doesn't happen.

    With hindsight ..... don't do it.

    On a forum that's supposed to be a place where we can be honest, without being judged, I'd have hoped for more understanding.

    Good luck Lisa & everyone else struggling with these thoughts. We need understanding. We don't need judgement :mad:
  6. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    As I have already said here, I really don't think there is a correct or universal conclusion that can be gained from this thread. Every relationship is different, be it with spouse, child or grandchild and one person's situation cannot be compared to another.

    Most here seem to be talking about parents or indeed grandparents and no, I wouldn't want my children to be burdened with my care and I know neither my mother nor indeed my husband would have wanted me to be either.
    However, what about the carer's feelings. Their feelings - of love, sadness, regret and guilt. We may say we don't want our children to look after us or visit us but what if they would rather do that.
    Why would I want to turn my back on a mother who had shown me nothing but love all my life because she became ill? Why would I want to desert my husband when I was his only source of reassurance and love.

    Incidentally, I don't think anyone here has been judged, we have only put our own point of view - just that one point of view and no one has said that Lisa is wrong to feel the way she does, just that others may not feel likewise. Is that not acceptable?

    P.S. Grandparents "help out" but do not see it as their purpose". not in my family!
  7. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    RosettaStone, I agree that it depends on the relationship that existed before dementia. I arrange carers cleaners and day care for my mum purely through duty and because no one else in the family will have anything to do with her (except my SIL whom I pay to provide care). She upset and drove family away over the years before dementia with her selfish self centred nastiness, sharp tongue and refusal to help or even see them.
    Like Rosetta I make sure she has good carers and is clean, well fed and safe and manage her finances. I have no hesitation in putting my husband and family first.
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    #28 Chemmy, Mar 19, 2017
    Last edited: Mar 19, 2017
    That what all distance carers have to do. It shows there can be a viable alternative. :)
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I agree with Saffie. I don't think anyone here has been judged and I think there has been a lot of understanding of Lisa's situation. Everyone's situation is different. None of us can help how we feel.
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    #30 Ann Mac, Mar 19, 2017
    Last edited: Mar 19, 2017
    Well said, Sam - understanding (and respect) is needed for every person who has posted on this thread, irrespective of their view. Dementia is as individual an experience for the carer as it is for the caree, and because of that, it can be so hard to understand where another carer is coming from, when they talk about how caring has affected them. But every feeling, every experience, is valid, and there is no right or wrong to any.

    My own experiences have left me understanding totally Red's post where she says her relationship with her Father has been 'polluted' by dementia. For all Mil was one of my closest friends, the hatred and nastiness she aimed at me, repeatedly once she developed the illness, has impacted on how I think of our relationship now and despite being told by other wise people, and even repeatedly telling myself that 'it wasn't her, it was the dementia', I think the relationship we once had will be forever tainted in my mind. Because I simply cannot shake the nagging suspicion that the nastiness must have stemmed from her real feelings about me, that she can't have liked me as much as I thought she did, for all those pre-dementia years. I may have used the word 'tainted' rather than 'polluted' - but I do get how Red feels.

    My experiences leave me agreeing with every single person who has said that they don't want their own kids (or in my case, even my husband) to take on the role of carer, the way I did with Mil, should I ever develop this horrible illness. Its so hard and so all consuming, no matter how willingly you take up the mantle of caring - in my head, because of my own experiences, I find myself using the word 'burden', and its not a burden I want for my kids. But I also get Kassy's post about rather dying now than ending up in a care home. Because there are some dreadful ones out there - we all read accounts of the issues in CH's on TP, and whilst some are an awful lot better than others, I think a lot of us feel that they can't compete with the care that a loving family member could give. Phrases like 'put in a home', which conjures up images of abandonment (even when I know that nothing could be further from the truth) don't help - looking at the possiblity of going into care home through non-dementia affected eyes is a scary prospect for anyone. I'd rather die now too.

    I don't know if I could use the word 'treasure' about the time I've spent with Mil, post dementia, as Saffie can. But, I think that's because I can't see that the care I gave actually made any difference in terms of it making Mil feel better, or helping her deal with the delusions, the fear, the paranoia. I tried - but I struggle to see how I actually helped. If I felt that I'd done some good, that I'd made a difference, if I felt that I had been a source of 'reassurance and love' that had helped, maybe I'd be able to 'treasure' that time too :( I can, however, be sort of glad that I tried - if I hadn't, I think the GM would have done me a lot of damage.

    I'm not sure that 'turning you back on' or 'deserting' someone because of their illness was suggested anywhere - simply the advice was that carer's need to think about putting themselves first because of the aftermath of caring and the emotional, physical and mental impact in can have on their health and their lives xxxx

    I also agree that the carer's feeling about wanting to take on care have to be respected - I wanted to (though like Sam, I wonder if I would have wanted it as much if I'd found TP in advance of my decision!)

    I am glad of this post - I think that open discussions like this, honest about all the many and various ways caring impacts, sharing experiences and giving advice and opinions, are really important - so, I'd also like to thank Lisa for starting this post x
  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    Me too. I really believed that I got on well with my MIL, but after frank conversations with her and others in the family a couple of years ago, it appears I've been living a lie for the last forty plus years.

    If I'm honest, I feel pretty indifferent to her now.
  12. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    What a wonderful post La Lucia - covers many things that I am experiencing and feeling, but perhaps am not able to articulate well.
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    As a family we've gone from having no experience of dementia for generations (as far as I know) to having 4 family members affected within the last decade. We have always looked after our elders, shopping, cleaning taking to appointments etc. But until dementia came along we remained a family. The "D" word certainly sorted the wheat from the chaff!!

    We are now abandoned by those who feel no obligation to care. My daughter came close to suicide at one point partly because of her grandad's behaviour toward her and her sister fell out with her because she couldn't believe that the tales she was telling about grandad were true...(they were).

    So knowing what I know now I would not have taken on caring for my dad as a family unit. I would have brought in outside help from the start. And when he can no longer manage to live on his own he will not come to live with us.

    I love my dad but his life is nearly over and my children still have their lives ahead of them. I would not sacrifice them for him.

    Dementia is an illness like any other disease. Why isn't it treated as one?

    What we all need is a cure or failing that the right to choose how we end our lives.

    Sent from my iPad using Talking Point
  14. Margi29

    Margi29 Registered User

    Oct 31, 2016
    Couldn't have put it better myself than how you have. Thank you
  15. Lawson58

    Lawson58 Registered User

    This has been such an interesting thread and I thank Lisa for starting it.

    We all have heard so often about how we all have choices about whether we undertake the caring role but sometimes it is never as simple as that. Dementia never appears out of nowhere. It is devious and sneaky and manipulates us into being a carer before we are really aware of how or when it happened. And sometimes it seconds other illnesses as a red herring so that by the time of diagnosis we are already caring.

    Long before OH was diagnosed with AD I knew that he had some form of dementia and all the geriatrician did was confirm for me what I already knew. But by then I was already a carer. Within the space of seven months, OH had a cardiac arrest at home and I saved his life, he had prostate problems requiring surgery and was then diagnosed with AD. Four months later he had an internal bleed and then later he had to have surgery for a hernia.

    The AD was the thing that destroyed our marriage, the battles, the paranoia and the denials. We discussed separation and it was at that time that I committed to being a carer unwillingly but for some very honest reasons. I would have to admit that by this stage we couldn't stand the sight of each other so every decision was made under certain emotional stresses.

    The first reason for me to stay was that I had saved his life and therefore felt a certain degree of responsibility in his welfare.

    Secondly, he has no family in Australia and I knew he would not survive on his own.

    Thirdly, he was my husband and although the relationship had deteriorated, I had a certain ongoing responsibility to make sure he was ok.

    Fourthly there was the long term situation that we would be financially better off to deal with whatever life threw at us and that included care for me should I need it,

    And the last, how do you walk away and turn your back on a PWD? That decision must be just as tough as to stay.

    So we all get caught up in a web of Alzheimers which is the most controlling master we will ever have, and it doesn't matter if it is your spouse, parents, MILS, FILS or grandparents, the process is still the same.

    So our choices are to either stay and care for the PWD, or to abandon them to LA, or others who are more reluctant than you to be involved in the care process.

    Some choice! Stay and you end up with depression, anxiety or burnout. Leave and you end up with guilt and stress and suspicions about your own character, and grief because you were a coward. That may not be necessarily true but that's how you will see yourself.

    So no two journeys are the same and some are more complex than others and I am quite sure that if we knew what we know now, then we would have certainly made different decisions at different stages of our caring.

    It is never selfish to have your own needs met but that often means taking a little step back from the caring role and as hard as that may seem, it is often the only way of keeping oneself in tact, in balance. Too often, though OH or MIL or whoever it might be is the one with the disease, everyone involved in their care suffers sometimes more than the PWD.

    Finding the balance always sounds like the way to go for me but I have never found anyone wise enough to tell me how to achieve this.

    But I do know that if ever I had to be placed in a home that my two children would react quite differently. Both would feel very badly but son would not have the slightest idea of how to deal with it and daughter would be devastated but would do all she could to be involved in my care. My instructions are that once I no longer know who they are, they are to stay away. And I say that because I have no desire to visit my experience on them.

    Well done Lisa. Your experience has formed your views and I have a huge respect for you for expressing them so honestly.
  16. carrieboo

    carrieboo Registered User

    Feb 1, 2016
    herts uk
    I didn't have my children in order to guarantee a supply of carers for my later years. We have had very frank conversations and they know that I'm perfectly clear that they should find a home for me if I can no longer care for myself.

    Their lives and families must be their priority, I would hate for them to feel the dead weight of duty and responsibility I feel towards my mother.
  17. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    Massachusetts USA
    I agree Kevin, but perhaps that was a bit blunt.

    Sent from my iPhone using Talking Point
  18. ellejay

    ellejay Registered User

    Jan 28, 2011
    Agree totally, I gave my children life, it was never a loan, didn't come with conditions.

    Lin x
  19. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    #39 Sam Luvit, Mar 19, 2017
    Last edited by a moderator: Mar 19, 2017
    Almost every thread I've read, where a carer is struggling, the response has been along the lines of "look after yourself", explained with "you can't care for someone if you are ill". People are encouraged to seek help from GP's, for themselves, or getting help in so they can have a break & look after themselves.

    I've bolded Lisa's comment "as far as physically possible", as I think it's the crux of her comment. (Apologies Lisa if I got that wring).

    The trouble is, as others have commented, that once dementia comes in the door, albeit, disguised as a number of other issues, we no longer have control of our lives. We step in following a fall, a hospitalisation, an illness, then find we can't walk away. A choice has to be made, but it's from a position we are already in. There is an assumption from others, family, friends, neighbours, that you will carry on. It takes a strength of character (that I don't have), to walk away from that

    There are many posts on here about the things that have been said to Carers, hard to hear things, nasty vicious comments. It's not them, it's the disease bounces against that other myth we hear in life, about how alcohol reduces our inhibition and we say what we really mean, without any social filters. Which one is right? I'd like to believe the former is lashing out at those nearest against the unfairness rather than against the person. However, my view of my mum has been tainted by this disease. Some of her less desirable qualities are showing, heaven help us later, when more may follow.

    There is no right or wrong answer to whether or not someone should be a hands on carer, care from a distance or find a good CH. I'm told there are good ones, but there are also a lot which focus on profit rather than care, but that's another story altogether. It should be a personal choice. Yes, many will ask for opinions, then make a decision. Often against the opinions given, but that's life.

    However, the idea of putting a Carers health & wellbeing first as far as possible, should be a no brainier IMHO. If we don't look after ourselves, we can't look after anyone else. The opportunity to look after our health etc is not so easy to do, it does go against our nature to look out for ourselves, when we "should" be looking out for someone else.

    How do I explain to my mum, I need a break (which is going to make her feel a burden) & she needs to pay a stranger to visit. Getting a break is important in enabling us to keep caring, but taking that break is usually fraught with difficulties.

    I did say other cultures have a cycle of generations. The parents work to provide food & shelter for the elders and children. The children are bought up by the grandparents. We don't have that culture. Yes, many grandparents do help out, babysit, drop & collect children from school or nursery, but the parents take over after work, it's not a full on support system like the cycle of generations. I'm sorry if my observation has been taken badly, but it was not meant as a criticism, only that there are often comments about how we don't look after our elders in the way other cultures do.

    Each of us makes a choice, encouraged at times by peer pressure of one kind or another, financial, duty, love, respect, etc, it is a personal choice all the same. But, we should take time for ourselves. Recharge our batteries. Be top of the pile for a week. We need to feel able to do it, without guilt, or we can't keep doing this

    Do I feel selfish planning a holiday? Yes I do. Do I need a break? Very much so. Will I go anyway? Yes I will

    TP has taught me, this is a marathon, not a sprint, so we need to take a breather & take care of ourselves or we won't get to the finish line, however it is that we cross it
  20. xrhiannax

    xrhiannax Registered User

    Mar 19, 2017
    It is amazing the things that people have done for their family, I wondered how people survive is beyond me sometimes.

    Sent from my iPad using Talking Point

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