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.....
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.....
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