Hi everyone. I am new to this site. I am looking for some advice. I'm a little bit bothered that people will think I'm an heartless cow. its a long story. i will try and keep it short. when I was a child I was sexually, mentally and physically abused by my step-father.after many years of broken relationships, due to my mental health I finally found a man who had the patience with me and supported me to the point I felt well enough to have children with him, although I have been on medication for many years to make me mentally stable. I have brought my boys up. i have found it extremely difficult to find a balance to how I brought my boys up. I opted for the very loving, spoiling my sons to bits, letting them walk all over me approach has I didnt want to bring them up in anyway shape or form that I was brought up. although My boys still walk all over me, they love me and I am very close to them. and I am dead proud of myself. but the years of worry and protection over them as been overwhelming to me and my relationship with my husband, but now my boys are good to go. I've done my best. the dilemma I am in now is I was about to feel free, but now my MILO has got the early signs of dementia and my husband has said she wil have to move in here with us. I know hw loves his Mam and Im so glad he does, but although I work, he is the main provider, so obviously I will be the one that will be the main carer for my MIL. we bring her to our house a couple of times a week, she is a fantastic woman and a fantastic nanna to her grandkids, but she will tell you the same stories ever and over again. it doesnt matter if we tell her we have already heard it she will still carry on telling us, she has recently started to get nasty if we mention that she has already told us and its getting very unpleasant, the kids are starting to be nervous around her. it sounds really really awful but at last my mental health has for a short spell been the best its been forever, now i am scared that Im going to go back to square one. I feel so weak because I dont think I will be able to cope if she moves in with us. she has made it very clear that she wants to move in. HELP!!!!!
early onset of dementia
- Thread starter ALISONRSSLLL
- Start date
Hi I hope this message gets to you! not too good at this stuff! firstly i would like to say i dont think you are at all heartless, I think life delivers unfair blows.
I dont have answers regarding what you should, ought, could or must do! but it may be helpful for you to think about what goals you have for the next 5-10 years too.
I am in a different situation but can see parallels hence this post. have been a main carer since i was 25 (for my fantastic son who has a learning dis) and have seamlessly moved into being a main carer for my husband, diagnosed with AD in May this year, also my mother with vascular at the same time. at 50 I am wondering what about me? (we have just managed to get a house for our son with 24hr support) i think it is hard to self advocate, but believe that has to be a big part of the way forward. i do get emotional support from my daughter but feel like i am dumping on her too. I dont know if this is in anyway helpful but if so please feel free to contact me
I feel for you. I care for my mum who has dementia and that us not easy. First thing is that you have to talk to someone about how you feel. It is okay to have these feelings, You must think of you as well and what your needs are, Is there a day care centre she can go to or even get some friends to visit her or even a carer to take the weight of you. Also with her telling the same stories the best solution is to sit there and to listen and pretend that you haven't heard the stories. She is only getting angry because she is frustrated. Remember to talk to someone
Maybe you need to lay down the law.
Maybe you need to be very clear to your husband that you have just done alot of years to bring your children up, after a tough childhood, it's now time for you to relax, not time to care for his mum.
Sure, he loves his mum, and so do you, but that doesn't make it automatically your job to become her carer. Tell him that you understand that he still works, and most of this will fall on your shoulders.
Tell him that you are not prepared to become the primary carer for his mother (his mother, not your mother).
If he can't understand that, you probably need to have it out, have the discussion, have the arguments, and make a decision based on your honest feelings rather than just suck it up, do what it takes to go along with the majority and then all of a sudden, she's moved in, it's too much for you, and then the fall out happens.
I've made the decision for my mum, already. I've made the decision that i will never have her live with me. If she needs to stay for a few weeks due to an emergency that pops up, so be it, but not permanently. If she needs full time care, she will need to go into respite or a nursing home. It's not something I am prepared to take on (she is 59 with early onset alzheimers and parkinsons). It doesn't mean I don't love her, but my children come first, and my mental health is also a priority. I can't destroy my life to care for her, when her needs are and will become so high. I don't think I will ever be able to do the job as well as a team of carers. I just don't have the patience. I am ok in admitting that, better that, than to just try, and ruin the quality of both of our lives, surely?
It's not going to be easy to say no, but this is your life, you deserve to spend some time and energy on yourself now that your children have grown up. I hope your family are understanding to your plight, and if they are not, i hope you have the strength to look after yourself first.
Maybe you need to be very clear to your husband that you have just done alot of years to bring your children up, after a tough childhood, it's now time for you to relax, not time to care for his mum.
Sure, he loves his mum, and so do you, but that doesn't make it automatically your job to become her carer. Tell him that you understand that he still works, and most of this will fall on your shoulders.
Tell him that you are not prepared to become the primary carer for his mother (his mother, not your mother).
If he can't understand that, you probably need to have it out, have the discussion, have the arguments, and make a decision based on your honest feelings rather than just suck it up, do what it takes to go along with the majority and then all of a sudden, she's moved in, it's too much for you, and then the fall out happens.
I've made the decision for my mum, already. I've made the decision that i will never have her live with me. If she needs to stay for a few weeks due to an emergency that pops up, so be it, but not permanently. If she needs full time care, she will need to go into respite or a nursing home. It's not something I am prepared to take on (she is 59 with early onset alzheimers and parkinsons). It doesn't mean I don't love her, but my children come first, and my mental health is also a priority. I can't destroy my life to care for her, when her needs are and will become so high. I don't think I will ever be able to do the job as well as a team of carers. I just don't have the patience. I am ok in admitting that, better that, than to just try, and ruin the quality of both of our lives, surely?
It's not going to be easy to say no, but this is your life, you deserve to spend some time and energy on yourself now that your children have grown up. I hope your family are understanding to your plight, and if they are not, i hope you have the strength to look after yourself first.
I have to say, I totally, I mean completely, agree with zeeb about this. It's hard enough to be a full-time live in carer when you want to do it, but when you don't? It's massively unfair of your husband to expect you to do this. And no, that doesn't make you a bad person: it just means you recognise your break point. Look I loved my mother dearly, and never had the issues you have had to content with, but I realised quite early on that I was not suitable to be a full time, hands on carer.
Never, never take on this role unless you are wholeheartedly committed to it, and even then, think several times.
Never, never take on this role unless you are wholeheartedly committed to it, and even then, think several times.
Why does your husband automatically think you are able, let alone whether you are willing, to have his mother come and live with you? What does he think would happen if, say, you had to go into hospital for a spell and he still had to go to work - who would care for his mother then?
If i were you I would have a serious talk with him and dig my heels in, refusing to have his mother come to live with you because you simply can not and WILL NOT be able to cope.
If i were you I would have a serious talk with him and dig my heels in, refusing to have his mother come to live with you because you simply can not and WILL NOT be able to cope.
Maybe you should get your husband to read some of the threads on here. I don't think anybody has a clue what it's like to care for someone with dementia 24/7 unless they've actually done it.
Just a few of the things that may be expected:
Up and down half the night, so that none of the family ever gets a proper night's sleep
No peace, ever, during evenings or weekends, because of pacing or constant asking of the same question
Never being able to go out as a family because the person is no longer safe to be left alone
Aggression, nastiness, completely unfounded and very hurtful accusations, even physical aggression
Complete refusal to wash or wear clean clothes, so that the person smells
Clinginess, i.e anxiety-borne refusal to leave the carer's side at all, which can drive anyone mad
I am not saying that everyone is going to display these effects, but many of us on here are all too familiar with many or all all of them.
Plus of course this is an illness that is only going to get worse, and later you may have incontinence to deal with. And this is quite bad enough when not coupled with a refusal to wash.
The fact is that many of us took on a carer's role without having the slightest idea what it was really going to entail. Your husband needs to realise that it is not just a case of 'getting a bit forgetful'. It is also the case that if someone is actually living with you, then it will often be a lot harder to get any help from social services, even when you really feel you need it, because obviously they know you are not going to walk out.
I agreed willingly to have my FIL to live with us, because I was very fond of him and I was clueless about what it was going to mean. Several years later, when it came to my mother, I knew I could not, and would not, do it again. I provided lots of support and went for countless 'sleepovers', but having dementia in our house again, 24/7, absolutely no way.
Just a few of the things that may be expected:
Up and down half the night, so that none of the family ever gets a proper night's sleep
No peace, ever, during evenings or weekends, because of pacing or constant asking of the same question
Never being able to go out as a family because the person is no longer safe to be left alone
Aggression, nastiness, completely unfounded and very hurtful accusations, even physical aggression
Complete refusal to wash or wear clean clothes, so that the person smells
Clinginess, i.e anxiety-borne refusal to leave the carer's side at all, which can drive anyone mad
I am not saying that everyone is going to display these effects, but many of us on here are all too familiar with many or all all of them.
Plus of course this is an illness that is only going to get worse, and later you may have incontinence to deal with. And this is quite bad enough when not coupled with a refusal to wash.
The fact is that many of us took on a carer's role without having the slightest idea what it was really going to entail. Your husband needs to realise that it is not just a case of 'getting a bit forgetful'. It is also the case that if someone is actually living with you, then it will often be a lot harder to get any help from social services, even when you really feel you need it, because obviously they know you are not going to walk out.
I agreed willingly to have my FIL to live with us, because I was very fond of him and I was clueless about what it was going to mean. Several years later, when it came to my mother, I knew I could not, and would not, do it again. I provided lots of support and went for countless 'sleepovers', but having dementia in our house again, 24/7, absolutely no way.
I suggest you tell your husband that he can pick his mother up every evening on his way home from work and have her at your house until, let's say, nine o'clock when he can take her home again. That way he will get to see her more. So that will be much better for him.
I agree with the others who say don't let this happen to you. Stand up for yourself. You are certainly not being unreasonable.
I agree with the others who say don't let this happen to you. Stand up for yourself. You are certainly not being unreasonable.
Separate your issues from those concerning your MIL-
It sounds as though you have enough on your plate without adding her to the mix.
You say she seems to have the onset on dementia..it wont get better , only worse.
Talk to your husband, get him to understand that she needs supported living, Yes, but in a place that is set up to support her, and that you would find it simply too difficult, love her as you do.
Move her now, while she isn't too far advanced, look at it as 'for a long term solution' She'd be far better to be moved somewhere now before she's too far gone than trying to moved her when things get worse, as they undoubtedly will.
You don't say how old your boys are, but try and get them to understand that Granny cant help it, when she tells you the same tales over and over agin, don't get angry/frustrated with her- just nod, or give a simple response- she's forgetting she's already told you!
The only way I would have my mother living with us, was in a separate granny flat, where you can walk away and have totally your own space, and carer support. Would that be possible?
It sounds as though you have enough on your plate without adding her to the mix.
You say she seems to have the onset on dementia..it wont get better , only worse.
Talk to your husband, get him to understand that she needs supported living, Yes, but in a place that is set up to support her, and that you would find it simply too difficult, love her as you do.
Move her now, while she isn't too far advanced, look at it as 'for a long term solution' She'd be far better to be moved somewhere now before she's too far gone than trying to moved her when things get worse, as they undoubtedly will.
You don't say how old your boys are, but try and get them to understand that Granny cant help it, when she tells you the same tales over and over agin, don't get angry/frustrated with her- just nod, or give a simple response- she's forgetting she's already told you!
The only way I would have my mother living with us, was in a separate granny flat, where you can walk away and have totally your own space, and carer support. Would that be possible?
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She has recently started to get nasty if we mention that she has already told us and its getting very unpleasant, the kids are starting to be nervous around her
It is absolutely valid to have the feelings you do without any of the "baggage" you have had to deal with. I highlight this bit as it shouts to me that the children and grandchildren's feelings also have to be factored in to any decisions.
People don't get better from this disease they can only get worse, and you don't have to focus just on the effects to you but to your children and grandchildren too who your husband loves just as much as his mum.
You are not heartless, I just could not cope with having my mum live with me too as much as I love her, my home is an escape from the worst parts of dementia. Some days when it is at its worst I go into "lock down" where to my shame I can't open the door or answer the phone as the aggression is just too much for me.
I do call other family members then to make sure she is safe but the whole irrationality of it all can be overwhelming. It's very difficult but I think your husband should read up on the reality of caring for a person with dementia and read some threads on here to get a better insight, not only on how it could affect you but the entire family too.
It is absolutely valid to have the feelings you do without any of the "baggage" you have had to deal with. I highlight this bit as it shouts to me that the children and grandchildren's feelings also have to be factored in to any decisions.
People don't get better from this disease they can only get worse, and you don't have to focus just on the effects to you but to your children and grandchildren too who your husband loves just as much as his mum.
You are not heartless, I just could not cope with having my mum live with me too as much as I love her, my home is an escape from the worst parts of dementia. Some days when it is at its worst I go into "lock down" where to my shame I can't open the door or answer the phone as the aggression is just too much for me.
I do call other family members then to make sure she is safe but the whole irrationality of it all can be overwhelming. It's very difficult but I think your husband should read up on the reality of caring for a person with dementia and read some threads on here to get a better insight, not only on how it could affect you but the entire family too.
