Children who appear not to care...

Discussion in 'ARCHIVE FORUM: Support discussions' started by jc141265, Oct 24, 2005.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #1 jc141265, Oct 24, 2005
    Last edited: Oct 24, 2005
    I used to see Dad on only a weekly or fortnightly basis until he came to live close to my house in the home. What I say here is no judgement of everyone's situation but it may help some parents to understand their children's behaviours towards their parents with dementia and may help children who have parent's with dementia understand their own feelings better.

    What I have found is that I am coping far better with Dad's illness now I see him every day and my Mum is coping far worse when she is seeing him only once a week if that. Thats not saying it is any easier, seeing him everyday, but shockwise and for having control of daily events it is.

    There must be something about the distance that allows us to block out the true state of affairs and so each time you visit after being separated, it shocks you to the core, whether it be 5 months or 5 days. I even notice the difference in feeling now when I don't visit dad for 2 days. So don't think that your child's shock is simply their own fault for not visiting in so long, every day away makes a difference.

    Whereas before I was the one who was always in tears about Dad and Mum was telling me to get over it and telling my family that I hadn't come to terms with the illness, now she is finding that she is in tears all the time and I am not, she is no longer able to be 'at terms with his illness'.

    The thing is before when I was in tears all the time she was angry at me, because I had it far easier in her eyes not having the daily care of my father to contend with and now she is beginning to see why I was like I was. I have to say that the guilt and worry that I was not doing enough probably added to my tears and my inability to cope, but I didn't know how else to help when my Mum was determined to be the one in control.

    I think another thing that exacerbated the shock for me was that as a daughter you tend to believe your father is invincible, even if you consciously know this is not true and have often argued with him and seen his human weak points. Also as a daughter having half come from this person's genes, their body its almost like having to face a part of your own body having a malfunction. I guess like husbands and wives come to think of their partner as 'their other half' for children the parent is part of their whole, or half of them too. More scarey is the genetic connection, if he has it, have i got half a chance of getting this too??

    Probably a lot of the time I was angry with my Mum (rightly or wrongly) because she was always so focused on how Dad's illness affected her, after all she had been with him for 40 years and he was her whole world and I only 30 and had a new separate life. But she was my Mum as well as my father's husband, but when I lost Dad, I lost Mum too. Instead it became more that I was the one who had to provide support but noone was there to support me but my poor unsuspecting husband to be who never realised what he had bought into when he fell in love with me in 2000, before he even knew Dad or how bad things would become.

    I have a right to be devastated too though, unlike my mum I have known Dad all of my life, I have had no life without my father in it somewhere. He has defined a lot of who I am. This disease is earth-shattering for children as much as it is for a spouse despite the fact that the child may no longer live with the sufferer and may have grown away from a relationship that involved dependence. Even though they may appear not to care.

    I think some people think that the children have an easier time, because they are not necessarily involved in the care-giving when a healthy parent remains who can provide this. But I never didn't care for my Dad because I didn't want to, I just didn't feel it was my place, my mother had said she wanted to do it and I didn't agree with all her decisions about how to care for Dad, but it was not my place to make life even more difficult for her by coming in and telling her how to run things. It is difficult not to do what your parents tell you, even when you are an adult!

    Had she not insisted on caring for him or had become unable to I would have taken on the caring role. I even offered to when she wanted to put him in the home, but she would not allow it and has power of attourney.

    In fact many a time, it ripped me apart to see my Dad being cared for in a way that I thought was not the best for him. Again it was not my place to say so and my Mum was doing the best she could.

    I liken my experiences with Dad, to my experiences with my step child. Often I don't agree with how her 'real' mother cares for her, but it is not my place to do anything but do the best to make up for the lackings I see when I do have custody.

    Just because I don't try to wrest my step-child away from her mother's care doesn't mean I don't wish to and am too slack to bother. I have weighed up the realities and think the damage this could do to her outweighs the positives. Sometimes also it would have been far easier to distance myself from my relationship with my step-daughter than to go through all this worry for her. I think a lot of children of dementia sufferers do this and so come across as uncaring and uninvolved, when really they have few other options. It is very difficult to love a dependent madly and not be in control of their care.

    It is also difficult even if you agree with the way they are being cared for because your other parent may not trust you with sole caring or try to shield you from it and with dementia caring it tends to be an all or nothing thing. The person who gets the all part is the carer and the others can only give relief here and there and be continually told that they have the easy end of the stick. When you are in between, not a sole carer who can justify giving up work and other comittments, the task can be very very hard and not even a little bit rewarding.

    Last but not least there is a money issue as well. In my case my father having worked all his life had quite a decent superannuation and acquired properties which could be used to provide for his care. Had I decided that I should be his sole carer, none of this would have been available for his care if my Mum had disagreed and she would have. And then as a child I have other responsibilities to my new family, my husband to be and my/his child, whereas my mother's sole responsibility was my father.

    So if your child isn't caring enough about their father or mother, is it because:
    1. They really don't care ( a possibility but I would think would be the minority of cases);
    2. They have other responsibilities as well that they are wondering how to balance;
    3. They feel that their help is undervalued or not wanted;
    4. They are struggling with the emotional issues that occur when you are not immersed in the caring completely;
    5. They are devestated by the loss of both parents and really don't know what they can do to help;
    6. If they have always had troubles with the well parent, perhaps they are trying their best not to step on toes in a terrible situation;
    7. They've given up the idea that they can be of any real help and are so distancing themselves for the sake of self preservation;
    8. They are stuck in the role of child and are trying to do what they think their parents want.

    I suggest if you want a child to help more:
    1. You should encourage them to tell you things they think would alleviate the situation, and listen to their suggestions, give good reasons why these suggestions won't work if you think they are untenable. My father had enough super and property ownership that he could have had an full-time nurse the whole time, but my mother would never listen to the fact that if she just gave up one piece of land, both he and her could have been better off without jeopardising her future security as well;

    2. Trust your child to be able to care for their parent. You had to learn how to do it, so must they. You can't expect us children to be brilliant at shaving, toileting or bathing our parents on the first day and if we can't do it immediately, don't never rely on us again. I would have happily struggled through such days to give my mother relief if she would have just trusted me. Dad would have been alright, he might have had a crappy shave one or two days, but I would have got there;

    3. If we seem worried about the prospect if you suggest we look after them for a day, understand that that is natural, its freaky to see your Dad naked!! But encourage us don't harumph and say ' i knew you really didn't want to help.' or"oh don't bother.'.

    4. Don't assume it would be detrimental for us to care for our parent. It might hurt but the bond I have developed with my Dad now I have to feed him and help get him changed on a regular basis is wonderful and well worth the sadness.

    5. Try to still be a parent. I know you have a lot on your plate, but I've had to be a parent to my mother and my stepchild and my father. Continue going to work and also pass my University exams. I have had to still maintain a relationship with my husband to be. I couldn't say to my step-child, I'm sorry honey my Dad comes first, don't expect me to look after you too. I'm not saying I've done a good job, but I do take time out from Dad to make sure I let my step-daughter know I am there for her and likewise I try to pay attention to my husband to be. When I am not succeeding I at least let them know that I wish I could and ask them to forgive me, let them know that I am aware of what my role in their life should be. If Dad were living with me this would be even harder but you have to think of the future and these other people are important as well. As a grown up daughter I didn't need much from my mother, just an understanding that my Dad's illness made me want to cry and cry and cry.

    6. Once you have organised with your child to look after their other parent let them do it on their own terms. My mum had a habit of telling me how I was doing Dad's nappy the wrong way. If he had leaked all over my lounge I would have learnt! Its just like giving your child into someone else's care, you need to just let go and let them do it and learn from their mistakes.

    Phew this was a long post. Please, if you are a parent and feeling resentful or hurt/disappointed by or towards your child's behaviour don't let this post make you angry or guilty. We are all only human. I'm not saying you are bad for not understanding, I'm just giving you an opportunity to understand and learn from this. Likewise if you have done all of the above to no avail then the fact is, you have things very hard and I am sorry your child doesn't care as much as I do. I am posting this here not as a scolding for you daring to think your child has it easy or is slack but to help you see the situation from another angle. Sometimes its easier to be blind to things when you pushed into a corner. Hopefully this might help some of you get a better response from your children and lessen your burden of caring.

    For those who are thinking, easy for her to say, she has no idea of my situation, your right. As Brucie's signature goes, I only speak from my experience.....
     
  2. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi Nat

    phew, i havent been in here in a while, but thought i would pop by to see how everyone was getting along.

    Your post interests me, as I am in your position, very much so...

    I am 36 years old, I have 4 children the youngest of whom is 7 months.

    My dad has lewybody and parkinsons. My mum has had a personality over haul!

    So yes it is very very difficult to come to terms with this situation that has been forced upon us.

    However, I used to visit dad every day, and I found that far more emotionally draining, than visiting twice a week like i do now.

    Everyone in their own situations find ways to deal with it.

    I have to agree with how difficult it is, your dad is the strongest person, a superhero, and then suddenly they are like a small child.....it is very hard.

    I miss my dad, and yet he isnt really gone yet. For us the grieving process has already started.

    Your post is very interesting, I enjoyed reading it

    Jane x
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Grieving

    Yup jane the thing about grieving and dementias is that its like your loved one dies everyday...not is dying everyday, but they die everyday and you get a new person you love appear and then that person dies again, and so on and so forth, and you never get closure until the real day of their death finally eventuates.

    I went to my Aunt's funeral earlier this year and yes it was so sad, she was a wonderful lady, but oh how envious was I in some ways. I don't want Dad to die but to carry this pain around for so long and get no closure, sometimes its unbearable! Though I have become numb to it in some ways now at last, the previous two years was really hard.

    As for me finding it easier visiting Dad all the time, no doubt that is because I was so stressed about him before he went into the home. Visiting him everyday is nothing compared to worrying about the bruises on him, noticing he was being ignored at home, seeing him yelled at, seeing him get skinnier and skinnier and nobody bothering to try and feed him. I hoped that it was just the illness but Dad has put on weight again now he is in the home.

    I see your other post about Christmas, I too am in a quandery about that. I've decided as Dad lives just up the road from me that he will spend the day at my house if no one else wants him (his state is such that this shouldn't upset him, for others it might).

    Some might say i am being silly as he won't know its Christmas, but I will and I know if I were in a home I'd want my family to bring me out on such days, he's worth the effort. Not really that hard at all, as afterall we will be just sitting around opening presents and eating, Dad loves eating! My husband to be has told me he will help out if Dad needs changing and I have a big back yard if he wants to yell and rant and rave (my Dad, not my hubbie :p ). I don't judge anyone who doesn't want to do this though (except my own family) as everyone situation is different, different families, different traditions, different behaviours and so on. Good luck and I hope you find a way that helps you cope,
    Thinking of you,
     
  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I just keep trying...

    Parents!

    I told my Mum today, that if she still didn't want to take Dad out of the home for Christmas I'd be happy to.

    She says oh but how are you going to change him, you can't do that....I said "Mum, I've done it before remember, its no biggie, Keith has offered to help too."

    Mum says "Oh no I don't think so, he can't come home to your place for Christmas and not be with me".

    I said, "I am just offering, I thought you didn't want him to be alone for Xmas."

    Mum says, "No, no, no its too hard for you, you can't do that."

    I said, "Yes, I can." Mum says, "No, I'll have to find some other way around it."

    Bloomin' heck what can I do???!!! And no she doesn't want to spend the day at my house its all arranged that the majority of the family will be at her house for Christmas and as get home from my honeymoon on Christmas eve night and am working the boxing day at 3am, I can't travel there.

    And no all you people from families with nice mothers, don't tell me she cares about me and doesn't want to put me out, she'd be quite happy if I would bring Dad to her, you have not spent 30 years with my mother!!....so I'll add another recommendation to the list:

    7. Don't be possessive of your spouse and then complain that your children are not helping.

    Well at least I've guaranteed that Dad will be with family at Christmas, if not with me! ;)
     
  5. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi Nat

    I thought about this too, but unfortunately dad is stil in the hospital, mainly because he gets very aggressive when he gets confused.

    he doesnt deal with change at all. So bringing him home, just for one day will confuse him so much i dont think it is fair to him, to put that pressure on him, or onto mum to be fair.

    She lived with the confusion and aggression for so long, and became very ill herself. She has only now started to become relaxed and putting on weight.

    Bringing him home for the day would help with our own guilt but i dont think it would help dads mental health.

    Also I have 4 children, and he doesnt cope at all seeing them all together in the hospital, so in an enclosed space, 3 excited children and a crawling baby.....that is a potential disaster.

    I work in mental health and i have done so many scenarios in my head and risk assessed them...

    christmas and visiting is going to be harder for us than it is my dad

    like you say, it is like they die each day

    love Jane xx
     
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Reply to Jane

    Jane,

    Thanks for replying I think there is a mistaken belief, that I think everyone should be a saint and have their loved one at home for Christmas day.

    I do not believe this, Dad was in a very similar situation as your Dad at one time, and I understand completely why you are making your decision.

    I have pushed for our loved ones not to be forgotten on christmas day because I see so many neglected everyday, not to make people feel guilty about not being able to. If you can't you can't, simple as that.

    My Dad too was not good at coping with my sister's four kids and during the angry agressive stage it was even worse in fact I think all their noise made him behave worse.

    Good that your mum is improving, hope you have the best xmas you can in this situation.
     
  7. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi Nat

    trying to make christmas happy for everyone is really an impossible task

    so yes we shall do the best we can in such an awful situation.

    I work in the community with mental health patients (altho on maternity leave til april) and very very few of our clients have family willing to visit any time of the year, not just at christmas.

    The lonliness of mental health isnt just confined to each individuals own mind......and unfortunatly Alzheimers is a mental health illness :(

    which is why between my mum, me and now both my brothers dad gets a visit a minimum of 5 times a week!

    we need to show we care, which is why yes we will visit over christmas (i will do every day) but i also know how difficult it is going to be too

    this illness really is **** :mad:
     

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