Hi, I'm new to TP. My hubby is in the early stages of dementia and is only 66, I am a bit younger than him. He seems to have accepted his diagnosis quite easily - he has always been a very easy going and laid-back person. I am finding it quite a struggle at the moment as I feel I have become "the husband" as well as the wife, and at times now feel more like "his mother"! Mainly because he has lost confidence in himself and can no longer do jobs around the house, but then just leaves it to me to sort out - either by doing it myself or getting someone in. I want him to be angry and fight a bit - not with me but with the illness! But instead I fill my days reminding him to do the things he needs to do and repeating myself. Usually I have ups and downs but at the moment I have been on a down for around 3/4 weeks! I am so miserable. What should have been a lovely retirement for us both has been snatched away for me to be left watching the man I love fade away! Sorry to go on so much!
Feeling very low!
- Thread starter Crashbabe
- Start date
Don't apologise, everything you're saying and feeling is valid. A diagnosis like this is the start of grief, and grief is an exhausting emotion. You're feeling all the losses as well as absorbing the roles you must adopt. I have no words of wisdom or sage advice, but I hope you feel better having shared, and you're always welcome to share, it really helps.
The one grace here is that this condition offers some protection for the sufferer, a childlike grasp of the situation, and altered reality can be a coping mechanism.
Be kind to yourself and take one day at a time, it really is hard.
Stephanie, xxx
The one grace here is that this condition offers some protection for the sufferer, a childlike grasp of the situation, and altered reality can be a coping mechanism.
Be kind to yourself and take one day at a time, it really is hard.
Stephanie, xxx
Good Morning
Morning to you,
I am in a very similair position to you, having recently moved to our retirement home looking forward to enjoying doing all the things we wanted to do. My partner is 19 years older than me and has been showing signs for about four years being diagnosed in April this year.
I feel my life is no longer my own and doing anything without a lot of thought and planning is just not an option. I am also the organiser of everything which is bad enough but it is not always easy to make even a phone call without his anxiety rising.
Like you I have good days and bad days and if my sleep is disturbed, which it often is then I am not as patient as I should be.
My partner did not accept that there was anything wrong so despite repeated attempts at getting Power of Attorney sorted we got to the point where we could not do this as there was concerns about his understanding and capacity to make this decision. I have just got the Guardianship sorted.
Despite all the upset and sadness I am still just so happy that he is still able to be with me and that most of the time he is happy and content.
If I can an ear to bend please feel free to contact me.
The dementia journey is really, really hard
I send you both loads of Love & Light
Morning to you,
I am in a very similair position to you, having recently moved to our retirement home looking forward to enjoying doing all the things we wanted to do. My partner is 19 years older than me and has been showing signs for about four years being diagnosed in April this year.
I feel my life is no longer my own and doing anything without a lot of thought and planning is just not an option. I am also the organiser of everything which is bad enough but it is not always easy to make even a phone call without his anxiety rising.
Like you I have good days and bad days and if my sleep is disturbed, which it often is then I am not as patient as I should be.
My partner did not accept that there was anything wrong so despite repeated attempts at getting Power of Attorney sorted we got to the point where we could not do this as there was concerns about his understanding and capacity to make this decision. I have just got the Guardianship sorted.
Despite all the upset and sadness I am still just so happy that he is still able to be with me and that most of the time he is happy and content.
If I can an ear to bend please feel free to contact me.
The dementia journey is really, really hard
I send you both loads of Love & Light
Hi, sorry to hear things are difficult for you. It's a total change of life and I agree with you it's totally unfair. My only advise is to try and accept the situation as best as you can and deal with things accordingly.
My dad has AD and my mum has struggled with it in many ways, sometimes the main carer is too close to see the bigger picture. She was complaining that he was so lazy, when she was poorly and laid up in bed he didn't even make her a cup of tea. Luckily I popped in to see them both the day she took to her bed. It was 3pm and neither of them had had anything to eat or drink. My dads AD is at a stage where even though he is hungry or thirsty he is incapable of making himself anything. The thought process seems to stop at hungry. Anyway I sorted them both out immediately, went shopping for ping meals then phoned my sister to make sure that they had a visit at least once a day from one of us.
Things are a lot better now, he has been assessed by social services and now has a carer help him in the shower twice a week and that has helped my mum immensely. She is coping much better now. Still my sister and I are popping in frequently to have a cuppa (and put a few loads of washing in, change bedding etc etc)
Big hugs to you, this is a great place to vent and share thoughts and ask for advice.
My dad has AD and my mum has struggled with it in many ways, sometimes the main carer is too close to see the bigger picture. She was complaining that he was so lazy, when she was poorly and laid up in bed he didn't even make her a cup of tea. Luckily I popped in to see them both the day she took to her bed. It was 3pm and neither of them had had anything to eat or drink. My dads AD is at a stage where even though he is hungry or thirsty he is incapable of making himself anything. The thought process seems to stop at hungry. Anyway I sorted them both out immediately, went shopping for ping meals then phoned my sister to make sure that they had a visit at least once a day from one of us.
Things are a lot better now, he has been assessed by social services and now has a carer help him in the shower twice a week and that has helped my mum immensely. She is coping much better now. Still my sister and I are popping in frequently to have a cuppa (and put a few loads of washing in, change bedding etc etc)
Big hugs to you, this is a great place to vent and share thoughts and ask for advice.
Hi and welcome to TP.
I can totally empathise with you. My husband is 21 years older than me had had is diagnosis of Alzheimer's 12 years ago. Over this time I have gone through every emotion you can possibly imagine! I can recognise all you say in relation to being the person who is now 'it'. It doesn't matter what needs done or organised it's me who has to do it or get someone in to do it. There's no longer anyone to discuss things with. My patience is sometimes short - it has been today. At the moment he's downstairs and I'm upstairs. Sleepless nights don't lead to a calm nature!
However, like others, I am glad I still have my husband home with me. Most of the time I can accept what we have and what we need to do. It took me a long time to reach acceptance. As they say, one day at a time.
I wish you (and Love and Light) strength for the journey. x
I can totally empathise with you. My husband is 21 years older than me had had is diagnosis of Alzheimer's 12 years ago. Over this time I have gone through every emotion you can possibly imagine! I can recognise all you say in relation to being the person who is now 'it'. It doesn't matter what needs done or organised it's me who has to do it or get someone in to do it. There's no longer anyone to discuss things with. My patience is sometimes short - it has been today. At the moment he's downstairs and I'm upstairs. Sleepless nights don't lead to a calm nature!
However, like others, I am glad I still have my husband home with me. Most of the time I can accept what we have and what we need to do. It took me a long time to reach acceptance. As they say, one day at a time.
I wish you (and Love and Light) strength for the journey. x
Hello, I'm so sorry to hear of your situation and how low you are feeling. It is a dreadful thing to have to cope with loved one with dementia. I found it helped me to just accept how things are and take it a day at a time. I try to enjoy today as best I can and have now pushed from my mind what I thought our future would have been. It doesn't help me cope by wishing it was different, because it will never be. I hope you feel a little brighter soon xxxx
I agree with all that has been said. We're in a very stressful situation. The only thing to do is to get on with what needs to be done.
Different things 'get to' different people. I can cope at the moment with all the physical stuff. My wife's doubly incontinent, but I'm lucky in that, after a mercifully brief period when she was very disturbed and aggressive, she is now completely co-operative nearly all the time. I have been through the experience of seeing her lose a couple of stone very rapidly and, with help, have got her back to a more normal weight - I'm actually trying to get a few pounds off her now as clothes don't fit properly!
What sometimes gets me depressed is the business of not really being able to talk to her when I want to. It's relatively easy to get a response from her when I want or need to (and this is a great help) but the conversations we used to have, whenever we wanted to - the daily dialogue that I now realise is such a normal part of a relationship - forget it! Also being the one who has to do all the thinking and make all the decisions is very daunting.
But like others, I feel lucky to still have her, even in her present state, and to be able to make a difference to her life. I know that it has taken me a long time to get to the point where I feel relatively confident as a carer. And like others I live with the knowledge that things can change very rapidly.
I would try not to worry that your husband isn't angry - laid back is far better in his situation surely? I think I would be angry if I were in his situation, but I doubt that it would help.
One thing you have probably already realised that there is an enormous amount of help and support on TP.
Different things 'get to' different people. I can cope at the moment with all the physical stuff. My wife's doubly incontinent, but I'm lucky in that, after a mercifully brief period when she was very disturbed and aggressive, she is now completely co-operative nearly all the time. I have been through the experience of seeing her lose a couple of stone very rapidly and, with help, have got her back to a more normal weight - I'm actually trying to get a few pounds off her now as clothes don't fit properly!
What sometimes gets me depressed is the business of not really being able to talk to her when I want to. It's relatively easy to get a response from her when I want or need to (and this is a great help) but the conversations we used to have, whenever we wanted to - the daily dialogue that I now realise is such a normal part of a relationship - forget it! Also being the one who has to do all the thinking and make all the decisions is very daunting.
But like others, I feel lucky to still have her, even in her present state, and to be able to make a difference to her life. I know that it has taken me a long time to get to the point where I feel relatively confident as a carer. And like others I live with the knowledge that things can change very rapidly.
I would try not to worry that your husband isn't angry - laid back is far better in his situation surely? I think I would be angry if I were in his situation, but I doubt that it would help.
One thing you have probably already realised that there is an enormous amount of help and support on TP.
Thank You
Thank you to those who have replied to my comment. It has helped. I feel as though I have started to "breathe" a bit more! And yes, I miss our general conversation and the way we used to laugh. I didn't expect such a change in my hubby so quickly! I am grateful to still have him I know, and I will take each day as it comes. I already feel as if I've started to climb back up again, thanks to your help and to that of my lovely friends.
Thank you to those who have replied to my comment. It has helped. I feel as though I have started to "breathe" a bit more! And yes, I miss our general conversation and the way we used to laugh. I didn't expect such a change in my hubby so quickly! I am grateful to still have him I know, and I will take each day as it comes. I already feel as if I've started to climb back up again, thanks to your help and to that of my lovely friends.
The conversation is what I miss too. I sit for hours just answering his questions, knowing he is going to repeat them again and again.
I see something on the news, and before I know what I am doing I am giving an opinion about it, his replies show me he has no idea what I am actually talking about and so I go off into the kitchen saying tomyself " When will I learn to stop having these conversations!!".
The last bit of chat we have just had is me answering him when he asked if I had seen his mother since early morning, he wondered if she was out visiting!!! His mother has been dead for over 30 years. I just said I thought she was out.
Jeannette
I see something on the news, and before I know what I am doing I am giving an opinion about it, his replies show me he has no idea what I am actually talking about and so I go off into the kitchen saying tomyself " When will I learn to stop having these conversations!!".
The last bit of chat we have just had is me answering him when he asked if I had seen his mother since early morning, he wondered if she was out visiting!!! His mother has been dead for over 30 years. I just said I thought she was out.
Jeannette
Hi
Sorry you are feeling low. I think that grief is a normal reaction to this dreadful disease-we are grieving for the loss of the person we once knew and the life we once had. It would be very unusual not to have these feelings and those of depression and anger. My husband is also 66 and the ALz is progressing very quickly in his case. He has no insight into his Alz and for that I'm glad. My Husband suffers from severe anxiety and can get very angry-but less now.
I'm glad your Husband has no feelings of anger towards his dementia-his laid back attitude will, hopefully continue. It's possible life will be easier for him, however I can understand your feelings about wanting to fight the disease.
Please take care and continue posting as other posters will almost certainly have experienced situations which you are facing.
Love from Lyn T
Sorry you are feeling low. I think that grief is a normal reaction to this dreadful disease-we are grieving for the loss of the person we once knew and the life we once had. It would be very unusual not to have these feelings and those of depression and anger. My husband is also 66 and the ALz is progressing very quickly in his case. He has no insight into his Alz and for that I'm glad. My Husband suffers from severe anxiety and can get very angry-but less now.
I'm glad your Husband has no feelings of anger towards his dementia-his laid back attitude will, hopefully continue. It's possible life will be easier for him, however I can understand your feelings about wanting to fight the disease.
Please take care and continue posting as other posters will almost certainly have experienced situations which you are facing.
Love from Lyn T
I am in the same situation and have an inkling of how you feel. I do angry very well and sometimes I think it's a relief for him that he doesn't remember or realise what's wrong half the time but it doesn't help the person who is trying to do the caring, however half heartedly on occasion. Like you, I find it difficult that our retirement and all the plans that went with it have vanished.
I don't have a solution, but try to make the most of what time there is, both with him, and for my sanity, with friends. We go to a couple of memory cafes run by the Alzheimer's Society and it is surprisingly helpful to talk to people in the same situation even if they don't have answers. Other than that, we get on with it, don't we? (while screaming inside sometimes)
I don't have a solution, but try to make the most of what time there is, both with him, and for my sanity, with friends. We go to a couple of memory cafes run by the Alzheimer's Society and it is surprisingly helpful to talk to people in the same situation even if they don't have answers. Other than that, we get on with it, don't we? (while screaming inside sometimes)
Hello
A very warm welcome to TP. You will get all the help and understanding you need here. I have just come back from a very dark place over the past few days, when my husband's AD had taken a downturn. I found it so difficult to handle, and almost gave up talking about it on TP, I was overwhelmed by the the immediate love and friendship extended to me from fellow TP'ers, who opened their arms and hearts to me when I was at my lowest ebb. They gave me the will to carry on. My darling husband George has been in a care home since April, and just like LynT 's husband he suffers from anxiety and aggression problems, he also does not seem to be aware that there is anything wrong with him. It is a long and lonely road, but with the help of this forum it does not need to be. There are good days and bad days, just try to make sure that the bad days don't drag you down, as they did with me last week. Get your strength from this forum, just asI have, and the advice you get will get from others on this journey will help you through.
Take care,
All my love
Margaret x
A very warm welcome to TP. You will get all the help and understanding you need here. I have just come back from a very dark place over the past few days, when my husband's AD had taken a downturn. I found it so difficult to handle, and almost gave up talking about it on TP, I was overwhelmed by the the immediate love and friendship extended to me from fellow TP'ers, who opened their arms and hearts to me when I was at my lowest ebb. They gave me the will to carry on. My darling husband George has been in a care home since April, and just like LynT 's husband he suffers from anxiety and aggression problems, he also does not seem to be aware that there is anything wrong with him. It is a long and lonely road, but with the help of this forum it does not need to be. There are good days and bad days, just try to make sure that the bad days don't drag you down, as they did with me last week. Get your strength from this forum, just asI have, and the advice you get will get from others on this journey will help you through.
Take care,
All my love
Margaret x
My husband was diagnosed last year at the age of 67. I am 63. I felt at the time, and still feel sometimes, that we have been robbed of what we thought our future was going to be. 18 months or so on, and I'm now used to it, but that doesn't make it easier, especially as the initial support of friends and family has dropped away a little bit as our situation has become the norm. Compassion fatigue is normal, people have their own lives to lead, which can leave you feeling very alone. Dementia is horrible for anyone to cope with. I have experience of it with my own mother and my mother in law, both of whom are still alive and need support. However, I believe that when it is your partner or spouse it is the worst and loneliest situation of all. I'm trying to think of words of comfort for you, but I can't. Other than to say you are not alone xxx
I was 60 and my husband 62 when he was diagnosed. Dementia has totally wiped our retirement out. Eight years on it still rules our lives but we accept it and it does not seem as bad as it was on the fateful day the consultant passed sentence.
A day at a time, no worrying about what is ahead, it will happen whether you worry or not. It is not all doom and gloom, there are good days to be cherished and remembered and hopefully next week, this last week will be forgotten and my husband will be in a better place and he will be smiling and laughing again.
I can't do carpentry, I can't build a brick wall or climb a ladder to fix the guttering or cut the top of the two conifer hedges we have. Bending down to get the weeds out is as bad. I can paint but do I want to do all four walls when I only used to do one then disappear to prepare lunch and come back to find all four walls done. The list goes on and top of all that there is the care. I can take the responsibility for it all, I just can't do it all. I will do what I can and that will have to suffice, wonder women I am not.
Saying living with dementia is difficult is an under statement.
Crashbabe your husband may not have lost interest he may have forgotten how to and as much as he might want to help he can't. You are lucky he is laid back about it. My husband was still of the opinion he could do things and I let him because it was easier than the arguments and I just got it all put right again while he was at the day centre. It was very difficult to get people to come at a certain time and be gone by a certain time so he never saw a workman.
Take care and keep posting.
Jay
A day at a time, no worrying about what is ahead, it will happen whether you worry or not. It is not all doom and gloom, there are good days to be cherished and remembered and hopefully next week, this last week will be forgotten and my husband will be in a better place and he will be smiling and laughing again.
I can't do carpentry, I can't build a brick wall or climb a ladder to fix the guttering or cut the top of the two conifer hedges we have. Bending down to get the weeds out is as bad. I can paint but do I want to do all four walls when I only used to do one then disappear to prepare lunch and come back to find all four walls done. The list goes on and top of all that there is the care. I can take the responsibility for it all, I just can't do it all. I will do what I can and that will have to suffice, wonder women I am not.
Saying living with dementia is difficult is an under statement.
Crashbabe your husband may not have lost interest he may have forgotten how to and as much as he might want to help he can't. You are lucky he is laid back about it. My husband was still of the opinion he could do things and I let him because it was easier than the arguments and I just got it all put right again while he was at the day centre. It was very difficult to get people to come at a certain time and be gone by a certain time so he never saw a workman.
Take care and keep posting.
Jay
Feeling Low
I think many of us could have written your letter, as it's typical of the problems we encounter every day. It is terribly hard and exhausting having to take over the full responsibility of the house, car, garden, finance, shopping, cooking, washing, etc, besides caring for our loved ones. I can empathize with you. You are not alone.
My husband does not recognize he has an illness. 'What illness, he will say, there is nothing wrong with me!' To me, I feel this lack of comprehension, is nature way of being kind. Like many I take each day as it comes. Today has been good, we joined our local ramblers group, and managed to walk 6 miles!
I found TP very therapeutic in response to my posting 'coping' a few weeks ago.
Amazing how kind and supportive the members are. I have felt so much better. I hope you will to.
With Many Best Wishes
Annais
I think many of us could have written your letter, as it's typical of the problems we encounter every day. It is terribly hard and exhausting having to take over the full responsibility of the house, car, garden, finance, shopping, cooking, washing, etc, besides caring for our loved ones. I can empathize with you. You are not alone.
My husband does not recognize he has an illness. 'What illness, he will say, there is nothing wrong with me!' To me, I feel this lack of comprehension, is nature way of being kind. Like many I take each day as it comes. Today has been good, we joined our local ramblers group, and managed to walk 6 miles!
I found TP very therapeutic in response to my posting 'coping' a few weeks ago.
Amazing how kind and supportive the members are. I have felt so much better. I hope you will to.
With Many Best Wishes
Annais
So sorry your going through this, your in the right place. My husband has dementia due to a large stroke. He was 56 at the time. I know how you feel. I have been so down for a long period of time, that when I have a goood day I am amazed. My Tom has been in NH for the last 4 plus years, and I am still working and taking care of the house/bills and everything rrelated to him. But whe I visit him and see the smile on his fface cause he is happy to see me, nothing else matters in the world but him. He is 63, I am 62 now. Life with dementia is indescribable to someone that doesn't have a love one going through it..people just don't understand, life as we know it will never be the same again. Cherish the good days when you get them. This is a great place to vent and ask questions, you are not alone.
