I am unable to conduct a conversation with anyone in the real world about my mother and dementia, I end up crying not being able to say what I want and end up disraught and making the people around me uncomfortable. We (my family and I) recently put my mum into care as she was unable to live unaided, my father hasnt coped in is now being treated for depression. Watching my mum desintergrate mentally (and physically) before my eyes is breaking my heart and hers. I never imagined anything could be this bad - I imagined my parents would grow old and pass peacefully - not this, not a world of confusion, medication, homes, carers (strangers looking after my mum. I see no light at the end of the tunnel - just a worsening situation.
My heart is breaking
- Thread starter Maryanne
- Start date
Dear Maryanne, my heart breaks for you. AD is a dreadful disease which destroys not only the sufferer, but the whole family. Sadly, not very many people pass away peacefully in their sleep, though it's lovely when it happens. For most of us there is pain, anguish and grief, for ourselves and for our families.
My husband has also recently gone into care, so I know how you and your dad feel. The only thing you can do is concentrate on making your mum's final years as comfortable as possible. Visit as often as you can, let your mum know she is still part of your life, and you love her. Hold her hand, touch her, make her feel cherished.
Your dad also needs to know that you still value him. He is feeling lonely, and possibly guilty that he could not care for your mum. Try to focus on helping each other.
I know it's hard, but you'll find lots of support on TP. Perhaps it might help your dad to join also?
Love,
My husband has also recently gone into care, so I know how you and your dad feel. The only thing you can do is concentrate on making your mum's final years as comfortable as possible. Visit as often as you can, let your mum know she is still part of your life, and you love her. Hold her hand, touch her, make her feel cherished.
Your dad also needs to know that you still value him. He is feeling lonely, and possibly guilty that he could not care for your mum. Try to focus on helping each other.
I know it's hard, but you'll find lots of support on TP. Perhaps it might help your dad to join also?
Love,
Dear Maryanne,
You can conduct as many conversations you want here on TP. No-one will see your tears, no-one will feel uncomfortable or embarrassed, everyone will understand, and try to support you through this terrible ordeal.
Perhaps you could share TP with your father. It won`t make your mother better, but it might help him less alone if he is able to see how many of us are in the same boat.
Post as often as you wish. There will always be someone here who understands. I hope it helps a little.
Love xx
You can conduct as many conversations you want here on TP. No-one will see your tears, no-one will feel uncomfortable or embarrassed, everyone will understand, and try to support you through this terrible ordeal.
Perhaps you could share TP with your father. It won`t make your mother better, but it might help him less alone if he is able to see how many of us are in the same boat.
Post as often as you wish. There will always be someone here who understands. I hope it helps a little.
Love xx
Dear Maryanne,
Just wanted to join Hazel and Sylvia in welcoming you to TP. You are always going tofind people here who know what you are goig through and who are ready to listen or give support or advice. I agree that your Dad might also find it helpful - what do you think?
This is a terrible and dreadful disease. It makes sufferers of everyone connected with it - but most especially of those closest to the patient.
Just remember that you have our understanding, our sympathy and our support. Visit whenever you need.
Just wanted to join Hazel and Sylvia in welcoming you to TP. You are always going tofind people here who know what you are goig through and who are ready to listen or give support or advice. I agree that your Dad might also find it helpful - what do you think?
This is a terrible and dreadful disease. It makes sufferers of everyone connected with it - but most especially of those closest to the patient.
Just remember that you have our understanding, our sympathy and our support. Visit whenever you need.
Dear Maryanne
When my Mum went into the CH I felt just like you and your Dad. The idea of these new people, who didn't know a thing about her, literally taking over Mum's day to day life was so hard to accept. However, have to say that it didn't take long to feel that I was seeing familiar faces and to see that most of the carers had really made an effort to get to know Mum and her ways.
You will need a lot of time to recover from the stresses and strains that you have been under and gain peace of mind but it will come.
Good luck
Liz x
When my Mum went into the CH I felt just like you and your Dad. The idea of these new people, who didn't know a thing about her, literally taking over Mum's day to day life was so hard to accept. However, have to say that it didn't take long to feel that I was seeing familiar faces and to see that most of the carers had really made an effort to get to know Mum and her ways.
You will need a lot of time to recover from the stresses and strains that you have been under and gain peace of mind but it will come.
Good luck
Liz x
Dear Maryanne,
It is so hard when our loved ones have to go into a Care Home but at the end of the day, as a Carer we can only do so much and then they need the 24/7 Proffessional care.
We do understand how heartbreaking to have a loved one go into Care and seeing other people care for our loved ones.
Here on Talking Point, we share, cry, laugh as a group of friends who know what it is like and we understand.
Take care of yourself.
Christine
It is so hard when our loved ones have to go into a Care Home but at the end of the day, as a Carer we can only do so much and then they need the 24/7 Proffessional care.
We do understand how heartbreaking to have a loved one go into Care and seeing other people care for our loved ones.
Here on Talking Point, we share, cry, laugh as a group of friends who know what it is like and we understand.
Take care of yourself.
Christine
As someone else said, 'there are many here in the same boat'. My dad has Alz and, at the moment, is at home being cared for by my mum. I know though, that he is declining and I don't know how long she can cope.
I'm thousands of miles away. No one here seems to understand. I'm new to the country and my friends are in the UK too. I can't even talk to dad on the phone now without welling up with tears. He's not like dad anymore. It's an awful, awful disease, but this forum is a tremendous crutch. There are many others like you, going through a dreadful time. Thankfully, they do understand, and from my limited experience, are a great comfort.
Hope you find comfort.
I'm thousands of miles away. No one here seems to understand. I'm new to the country and my friends are in the UK too. I can't even talk to dad on the phone now without welling up with tears. He's not like dad anymore. It's an awful, awful disease, but this forum is a tremendous crutch. There are many others like you, going through a dreadful time. Thankfully, they do understand, and from my limited experience, are a great comfort.
Hope you find comfort.
Dear Maryanne,
Welcome to TP, I am sure that you will find lots of support here along with caring thoughts.
Lot's here will relate to you and your dad's heartache. Placement
is a very difficult time for all concerned and unfortunately this disease usually dictates the necessity for placement at some time.
I placed my mum in a home eight months ago and it is heartbreaking watching the deterioration and knowing the situation will just further deteriorate. I just find peace in knowing that I am still there for mum and doing my utmost to make sure she is still a somebody.
I am sorry that you and your poor dad are having such a hard time of it, hopefully the support you receive will lighten your burden. Take Care, Taffy.
Welcome to TP, I am sure that you will find lots of support here along with caring thoughts.
Lot's here will relate to you and your dad's heartache. Placement
is a very difficult time for all concerned and unfortunately this disease usually dictates the necessity for placement at some time.
I placed my mum in a home eight months ago and it is heartbreaking watching the deterioration and knowing the situation will just further deteriorate. I just find peace in knowing that I am still there for mum and doing my utmost to make sure she is still a somebody.
I am sorry that you and your poor dad are having such a hard time of it, hopefully the support you receive will lighten your burden. Take Care, Taffy.
Maryanne,
I would like to add my welcome as well.
You and your Dad are going through a very hard time at the moment and I know there isn't anything that I can say to help you feel better. But, from what I've learnt from others on TP, time will help to ease your pain. You will get to know your Mum's carers well and learn to trust them to do a wonderful job looking after her. You and your Dad can spend some time with her without all the associated worries of the physical caring.
Just words, I know, but we have to believe them. I am trying to find a home for my husband at the moment and disintegrate into tears when I actually try to visualise him in any I visit. I'm trying hard to follow my own advice, but it's so hard.
You will gets lots of support from everyone on here and I really hope it helps you both at this difficult time.
From one Mary-Ann to another!
Westie - aka Mary-Ann
I would like to add my welcome as well.
You and your Dad are going through a very hard time at the moment and I know there isn't anything that I can say to help you feel better. But, from what I've learnt from others on TP, time will help to ease your pain. You will get to know your Mum's carers well and learn to trust them to do a wonderful job looking after her. You and your Dad can spend some time with her without all the associated worries of the physical caring.
Just words, I know, but we have to believe them. I am trying to find a home for my husband at the moment and disintegrate into tears when I actually try to visualise him in any I visit. I'm trying hard to follow my own advice, but it's so hard.
You will gets lots of support from everyone on here and I really hope it helps you both at this difficult time.
From one Mary-Ann to another!
Westie - aka Mary-Ann
Dear Maryanne,
My mother had to go into an EMI Nursing Home when she broke her hip and she was terribly distressed and ill at first. Fortunately, the mental health nurses realised that she still had lucid moments and was able to hold a normal conversation and she was moved into the general nursing section of the home after two weeks.
Once the medication was sorted out, so that she was less depressed and became more settled, things were better. Then she got to know the staff-not necessarily by name, but she did recognise individuals and began to chat to them. After a couple of months she made a friend in the nursing home, who came to "visit" her in her room and they would sit for hours together.
I visited several times a week and sometimes Mum knew who I was and sometimes she didn't, but usually she was settled and contented. I have nothing but praise for all the staff, including the ancillary staff who all treated Mum with respect and kindness.
Mum had a tummy bug in May, which she was recovering from, but then unexpectedly had a heart attack at six o'clock in the morning and died quickly on arrival at the hospital, just before we arrived. She wasn't alone, because the NH staff and hospital staff had been caring for her all the time and she looked really peaceful.
I also thought how well looked after and well cared for she seemed to be. Mum had enjoyed the food at the NH and also had her hair done every couple of weeks, by a lovely, friendly and chatty hairdresser at the home.
There are lots of negative reports of homes in the press, but there are plenty of good homes with caring staff, but these just don't seem to get the same publicity.
I'm sure things will improve for you all and there does come a time, when 24/7 care is essential for the well-being of someone suffering from dementia.
Kayla
My mother had to go into an EMI Nursing Home when she broke her hip and she was terribly distressed and ill at first. Fortunately, the mental health nurses realised that she still had lucid moments and was able to hold a normal conversation and she was moved into the general nursing section of the home after two weeks.
Once the medication was sorted out, so that she was less depressed and became more settled, things were better. Then she got to know the staff-not necessarily by name, but she did recognise individuals and began to chat to them. After a couple of months she made a friend in the nursing home, who came to "visit" her in her room and they would sit for hours together.
I visited several times a week and sometimes Mum knew who I was and sometimes she didn't, but usually she was settled and contented. I have nothing but praise for all the staff, including the ancillary staff who all treated Mum with respect and kindness.
Mum had a tummy bug in May, which she was recovering from, but then unexpectedly had a heart attack at six o'clock in the morning and died quickly on arrival at the hospital, just before we arrived. She wasn't alone, because the NH staff and hospital staff had been caring for her all the time and she looked really peaceful.
I also thought how well looked after and well cared for she seemed to be. Mum had enjoyed the food at the NH and also had her hair done every couple of weeks, by a lovely, friendly and chatty hairdresser at the home.
There are lots of negative reports of homes in the press, but there are plenty of good homes with caring staff, but these just don't seem to get the same publicity.
I'm sure things will improve for you all and there does come a time, when 24/7 care is essential for the well-being of someone suffering from dementia.
Kayla
Thank you all
I have been off air for a short time. But I just wanted to thank most sincerely everyone for the kind words and support - I went and saw my mum and dad last weekend (I live in the outback of Australia and its a 400km drive to my parents) and my dad was slightly better and mum was ok. I am getting used it slowly - I have realised visitng in the morning, for them both, is the best time.
I question many things now - particuraly the exsistance of God, becuase I dont know what good comes of this horrible disease and many others that reduce good, decent people into these shells - I cant beleive that making my mum and dad suffer like this can be a good thing - and not to mention my mentally handicapped brother that after spending all his life being cared for by my parents is now in an independantly living sitiatuion and learning to cope and the world and some of the dispicable people in it (he has already been assulated by a stranger)- but then I see the wonderful people that care for my parents and those that help my brother and it renews me a bit............but this is a long hard road.
What I have noticed is their 'friends' and 'family' not stopping by much - I get upset becuase they think mum, dad and my brother dont notice, but they do, and it hurts.
The journey continues.......
I have been off air for a short time. But I just wanted to thank most sincerely everyone for the kind words and support - I went and saw my mum and dad last weekend (I live in the outback of Australia and its a 400km drive to my parents) and my dad was slightly better and mum was ok. I am getting used it slowly - I have realised visitng in the morning, for them both, is the best time.
I question many things now - particuraly the exsistance of God, becuase I dont know what good comes of this horrible disease and many others that reduce good, decent people into these shells - I cant beleive that making my mum and dad suffer like this can be a good thing - and not to mention my mentally handicapped brother that after spending all his life being cared for by my parents is now in an independantly living sitiatuion and learning to cope and the world and some of the dispicable people in it (he has already been assulated by a stranger)- but then I see the wonderful people that care for my parents and those that help my brother and it renews me a bit............but this is a long hard road.
What I have noticed is their 'friends' and 'family' not stopping by much - I get upset becuase they think mum, dad and my brother dont notice, but they do, and it hurts.
The journey continues.......
Maryanne, my Mum has recently gone into care and I know exactly how you feel. Reading your post describes exactly my own feelings at the moment. All I can say is that your friends and family understand and are there for you to share your pain. I find it also helps to talk to people on this forum. It's nice to be able to get things off your chest and not worry about people seeing you cry. I don't really know what else to say except take care of yourself and get as much rest (physical and emotional) as you can.
Hi
I read your post and understand exactly how you are feeling.
My parents live with me, dad has dementia and I guess I was in denial over it really - it never seemed too bad. Two weeks ago, we lost my mum. She got pneumonia and just couldn't fight it off.
Life since then has not been the same. I've lost my mother and suddenly being here all day with my dad alone has made me see just how confused he is.
I dred the future. I just cried to my sister 10 mins ago on the phone telling her how I had just seen him dribble all down his clean top. I told her I don't know how I will cope with later stages of this disease. It breaks my heart to see my dad dwindling away.
I've only just joined this forum, and am finding it a great way of expressing how I feel and what my fears are.
We are all here for you.
Beverley xxx
I read your post and understand exactly how you are feeling.
My parents live with me, dad has dementia and I guess I was in denial over it really - it never seemed too bad. Two weeks ago, we lost my mum. She got pneumonia and just couldn't fight it off.
Life since then has not been the same. I've lost my mother and suddenly being here all day with my dad alone has made me see just how confused he is.
I dred the future. I just cried to my sister 10 mins ago on the phone telling her how I had just seen him dribble all down his clean top. I told her I don't know how I will cope with later stages of this disease. It breaks my heart to see my dad dwindling away.
I've only just joined this forum, and am finding it a great way of expressing how I feel and what my fears are.
We are all here for you.
Beverley xxx
I am two people now
I feel like I am two people, or at least have two lives and two states of being.
There is my 'daily' life - where I get up go to work, run my business, make decisions, go to meetings and to everyone seem okay with everything.
Then there is the other me, that sneeks to the toilet to cry, cries in the shower, cries out walking the dog, anywhere really I can get away with it. I find i am unable to even watch fictional tv shows that show people with Alzheimers.
My husband is great he says let it out - and supports me - but I dont know if he really gets the pain, the physical pain I feel, the loss I feel, in so many ways my mum has gone and I am finding it hard to remember what she was like but yet I still get to look into here vivid green eyes as she struggles with her life - I smile and comfort and spend time with her when I can but inside I am screaming.
I read a wonderful quote some time ago that sums up things for me "Life is learning to find the balance between bliss on one hand and total despair on the other" - one part of my life is going along great, happy family, good buisness, great marriage, achieving goals - all is well, on the other side is the disease and the torment it is inflicting on my beautiful mother, my stoic father, my confused and lost brother and my angry sister.
I never thought this is what aging would mean for my beloved family. Thank you for listening.
I feel like I am two people, or at least have two lives and two states of being.
There is my 'daily' life - where I get up go to work, run my business, make decisions, go to meetings and to everyone seem okay with everything.
Then there is the other me, that sneeks to the toilet to cry, cries in the shower, cries out walking the dog, anywhere really I can get away with it. I find i am unable to even watch fictional tv shows that show people with Alzheimers.
My husband is great he says let it out - and supports me - but I dont know if he really gets the pain, the physical pain I feel, the loss I feel, in so many ways my mum has gone and I am finding it hard to remember what she was like but yet I still get to look into here vivid green eyes as she struggles with her life - I smile and comfort and spend time with her when I can but inside I am screaming.
I read a wonderful quote some time ago that sums up things for me "Life is learning to find the balance between bliss on one hand and total despair on the other" - one part of my life is going along great, happy family, good buisness, great marriage, achieving goals - all is well, on the other side is the disease and the torment it is inflicting on my beautiful mother, my stoic father, my confused and lost brother and my angry sister.
I never thought this is what aging would mean for my beloved family. Thank you for listening.Hi Maryanne,
Yes I feel the same. I know when I am having real problems with my life when I dread the evenings and weekends because if I am at work(generally I like my job)I have less time to think about the fact Mum is in a care home(miserable) and my father is miserable because he is alone in his house. I feel guilty if I enjoy myslf as I feel as though it is my fault that they are so miserable.
On the other hand can you be responsible for someone elses happiness and even though Mum is generally quite in her own world she does say "You have your own life and the children" and I am not getting any younger and we have several friends our age who are ill or have lost a parner. There is only so much that you can do and perhaps recognising that is important.
Heard part of a radio interview on dealing with problems this week and it reminded me to
Breath properly- I am always panicing over parents, there seems to be one crisis after another - speaker said when you panic you shallow breath and then brain panics. You end up in a spiral. Certainly applies to me.
Expect of yourself what is human rather than superhuman. When I am being rational I realise I have done what I would expect most people in this situation to do.
Accept there are some things you have no or little control over. I cannot stop my Mum having Alzheimers or really do much about the fact my father is hard to make happy. He always has been like this.
It all sounds so twee but when I read your post about how bad you feel and I am thinking that somehow your and my lives have to be good and liveable although our parents are at a sad time in their lives.
Thinking of you and hope you can feel better soon
Yes I feel the same. I know when I am having real problems with my life when I dread the evenings and weekends because if I am at work(generally I like my job)I have less time to think about the fact Mum is in a care home(miserable) and my father is miserable because he is alone in his house. I feel guilty if I enjoy myslf as I feel as though it is my fault that they are so miserable.
On the other hand can you be responsible for someone elses happiness and even though Mum is generally quite in her own world she does say "You have your own life and the children" and I am not getting any younger and we have several friends our age who are ill or have lost a parner. There is only so much that you can do and perhaps recognising that is important.
Heard part of a radio interview on dealing with problems this week and it reminded me to
Breath properly- I am always panicing over parents, there seems to be one crisis after another - speaker said when you panic you shallow breath and then brain panics. You end up in a spiral. Certainly applies to me.
Expect of yourself what is human rather than superhuman. When I am being rational I realise I have done what I would expect most people in this situation to do.
Accept there are some things you have no or little control over. I cannot stop my Mum having Alzheimers or really do much about the fact my father is hard to make happy. He always has been like this.
It all sounds so twee but when I read your post about how bad you feel and I am thinking that somehow your and my lives have to be good and liveable although our parents are at a sad time in their lives.
Thinking of you and hope you can feel better soon
Thanks Christinec
Your right about the breathing thing sometimes I get so upset i my chest tightens and my breathing suffers, good advice to remember.
What really struck home was the bit about your father being hard to make happy - but thats the way he had alwasy been. That is soo true of my own father - I feel at times with decisions my sister and I make regarding both their care is that we are damned if we do and damned if we dont - and that creates such turmoil for my sister and I - but when i think back and think logically , as much as i love them, Mum and dad have both been hard to please, particularly as they got older - and there have been times when just nothing is right. I feel a bit of a relief to hear someone say something like that as I feel terribly guilty at times, when Mum and Dad are having bad days (as Dad has gone into care as well) and they tell me how unhappy they are one minute and then you can ring back not an hour latter and everything is great and they couldnt be happier - it is like a rollercoaster ride (forgive the cleche).
I have to remind myself that they are in the best place possilbe and their carers do an amazing job.
The worst is my parents did everything for us and cared so well for all of their children and gave us quiet the idealic upbringing and I feel like when its our turn to help them we have let them down, I wonder if cant do more..........
Your right about the breathing thing sometimes I get so upset i my chest tightens and my breathing suffers, good advice to remember.
What really struck home was the bit about your father being hard to make happy - but thats the way he had alwasy been. That is soo true of my own father - I feel at times with decisions my sister and I make regarding both their care is that we are damned if we do and damned if we dont - and that creates such turmoil for my sister and I - but when i think back and think logically , as much as i love them, Mum and dad have both been hard to please, particularly as they got older - and there have been times when just nothing is right. I feel a bit of a relief to hear someone say something like that as I feel terribly guilty at times, when Mum and Dad are having bad days (as Dad has gone into care as well) and they tell me how unhappy they are one minute and then you can ring back not an hour latter and everything is great and they couldnt be happier - it is like a rollercoaster ride (forgive the cleche).
I have to remind myself that they are in the best place possilbe and their carers do an amazing job.
The worst is my parents did everything for us and cared so well for all of their children and gave us quiet the idealic upbringing and I feel like when its our turn to help them we have let them down, I wonder if cant do more..........
Such good advice, Christine. Not twee at all, and I think it's something we all need to remember.
Love,
How Sad This All Is
My daughter and i can no longer carry on and so we are now waiting for a care home place i so wanted to be able to look after my husband but the truth is i cant i cant work full time have a life with my daughters and my three grandchildren all we talk about is Dementure the years of his care are taking its toll on us all
there are no vists from friends or family now that all ended a while ago our daughter has no friends call at the house its to hard for anyone realy to cope with you know no chit chat only Dementure and the odd things that he does has he fallen over is the carer in yet oh they are late and off course i cant go out a short trip to the shops and all i do is worry and oh yes maybe a coffee but cant stay long yes thats the lives of most of us i think
Im hoping my daughters and i can have a bit of normal life with the 3 boys id like to see them more with out my husband telling them to be quite or isnt it about time they went home he wants me at his beck and call all the time and i can understand why,
But i feel so tired nothing left to give im so sorry i cant do this anymore i did so want to look after him i have tried i cry i get angry and so it goes on i just can not keep up with this awfull illness its distroyed are family to watch the man i married try to put his dreesing gown on to see him try to sit on the loo or sit in a chair to have to give him praise if he has a dry bed its i cant even think of the words ,
He was a smart intelegent man far more so than me yes hes much older than me but i look around and see men much older and i think that could be my husbaand , we should be out together , sorry ive gone on a bit off a rant !!!!!
My daughter and i can no longer carry on and so we are now waiting for a care home place i so wanted to be able to look after my husband but the truth is i cant i cant work full time have a life with my daughters and my three grandchildren all we talk about is Dementure the years of his care are taking its toll on us all
there are no vists from friends or family now that all ended a while ago our daughter has no friends call at the house its to hard for anyone realy to cope with you know no chit chat only Dementure and the odd things that he does has he fallen over is the carer in yet oh they are late and off course i cant go out a short trip to the shops and all i do is worry and oh yes maybe a coffee but cant stay long yes thats the lives of most of us i think
Im hoping my daughters and i can have a bit of normal life with the 3 boys id like to see them more with out my husband telling them to be quite or isnt it about time they went home he wants me at his beck and call all the time and i can understand why,
But i feel so tired nothing left to give im so sorry i cant do this anymore i did so want to look after him i have tried i cry i get angry and so it goes on i just can not keep up with this awfull illness its distroyed are family to watch the man i married try to put his dreesing gown on to see him try to sit on the loo or sit in a chair to have to give him praise if he has a dry bed its i cant even think of the words ,
He was a smart intelegent man far more so than me yes hes much older than me but i look around and see men much older and i think that could be my husbaand , we should be out together , sorry ive gone on a bit off a rant !!!!!
Linda, I know how hard it is. I feel exactly the same about my husband being in a home. Every time I see him, I want to bring him home with me.
But I know I couldn't manage him on my own.
It's hard to live with the guilt feelings, and the regrets over what we've lost, but you've done your best for him. All you can do now is make sure he's well cared for, and knows he's still loved.
Love and hugs,
But I know I couldn't manage him on my own.
It's hard to live with the guilt feelings, and the regrets over what we've lost, but you've done your best for him. All you can do now is make sure he's well cared for, and knows he's still loved.
Love and hugs,
I am in the same position
Hi Linda
I know exactly what you are talking about.
My Darling hubby is a lot older than I am.
Having said that, I care so much.
Here if you need me.
Barb
Hi Linda
I know exactly what you are talking about.
My Darling hubby is a lot older than I am.
Having said that, I care so much.
Here if you need me.
Barb
