Early stages?

[Prof’s wife]

My husband is in the early stages of Alzheimer’s, which makes it sound as tho it’s easy, but it isn’t! He can be left alone for 2-3 hours, and doesn’t need help with dressing, toileting or eating. He is charming, funny and affectionate and when we are in company, no-one seems to notice any difference, altho we have told most of our family and friends. He is accepting of his condition. A family member gives me respite when I need it. We don’t have money worries. Really, my circumstances are very good.

So what’s my problem? It’s grief. And not anticipatory grief either. I’ve already lost my best friend, my best companion and my greatest supporter. Other friendships and family just don’t begin to fill the gap. At times, I’m desperately lonely, I feel as though I have lost myself as well, as there is no time or freedom to do the things that keep me mentally well. Even when I’m out with friends, going to a class etc, I feel lonely. people are very kind, but somehow their kindness isn’t what I need. I’ve tried support groups, but they are not for me at the moment, as everyone in them seems to be at a much later stage.

His anxiety about every detail is hard to bear, especially as he never used to be an anxious person. Yesterday he told me he’d had a dream in which I left him somewhere, and didn’t come back. I realise that subconsciously he fears I will not be around for him, although I always will be. It feels imprisoning, but at the same time I can understand his fear and it grieves me that he should be so scared.

The one thing that keeps me going is feeling proud of the care I give. I work very hard at giving him as much autonomy as possible. I work hard at keeping him awake and interested. I rejoice in being able to make him laugh. I ensure he makes appointments, has nutritious food and takes his meds, but I do it in such a way that he loses no autonomy.

so it’s grief, and yes, exhaustion. I am so, so tired.

 

[Jaded'n'faded]

The one thing that keeps me going is feeling proud of the care I give. I work very hard at giving him as much autonomy as possible. I work hard at keeping him awake and interested. I rejoice in being able to make him laugh. I ensure he makes appointments, has nutritious food and takes his meds, but I do it in such a way that he loses no autonomy.

This concerns me. It's great that caring for him so well makes you feel a little better, but what happens if you can't do it anymore? What's that going to do to your self-esteem and well-being?

You're not a robot and you can't turn off the feelings of loss or your concerns for what he is going through but you mustn't ignore what you're going through or you will lose yourself to his dementia.

Please try to get some time to yourself and do non-dementia things and keep seeing your friends. Sadly, things will only get worse so do think about your own part in this and plan for your own future as well as his.

Preserving his autonomy is a bit of an illusion because that's already gone really, hasn't it? He couldn't manage without you... Don't do too much - get others to help more.

 

[sapphire turner]

Ah Prof’s Wife, I know what you mean about the grief- I am at a similar stage to you, and the pain of losing my best friend is sometimes all consuming. It’s a lot to take in and accept, especially when he is having an occasional good day and seems like my old true love. I still love him but not in the same way, it’s too painful as unlike your OH he is still very much in denial and blames me for everything. He can be very cruel, which is so unlike the man he was.
It’s hard to know what to hope for, but it seems to be changing fast just now (compared to a very slow build up of symptoms over the last 5 years). Maybe the best I can hope for is him becoming more accepting and less angry. I don’t mind the hard work but it’s hard to take day after day of him being a miserable cantankerous old sod!

 

[NEESE201]

My husband is in the early stages of Alzheimer’s, which makes it sound as tho it’s easy, but it isn’t! He can be left alone for 2-3 hours, and doesn’t need help with dressing, toileting or eating. He is charming, funny and affectionate and when we are in company, no-one seems to notice any difference, altho we have told most of our family and friends. He is accepting of his condition. A family member gives me respite when I need it. We don’t have money worries. Really, my circumstances are very good.

So what’s my problem? It’s grief. And not anticipatory grief either. I’ve already lost my best friend, my best companion and my greatest supporter. Other friendships and family just don’t begin to fill the gap. At times, I’m desperately lonely, I feel as though I have lost myself as well, as there is no time or freedom to do the things that keep me mentally well. Even when I’m out with friends, going to a class etc, I feel lonely. people are very kind, but somehow their kindness isn’t what I need. I’ve tried support groups, but they are not for me at the moment, as everyone in them seems to be at a much later stage.

His anxiety about every detail is hard to bear, especially as he never used to be an anxious person. Yesterday he told me he’d had a dream in which I left him somewhere, and didn’t come back. I realise that subconsciously he fears I will not be around for him, although I always will be. It feels imprisoning, but at the same time I can understand his fear and it grieves me that he should be so scared.

The one thing that keeps me going is feeling proud of the care I give. I work very hard at giving him as much autonomy as possible. I work hard at keeping him awake and interested. I rejoice in being able to make him laugh. I ensure he makes appointments, has nutritious food and takes his meds, but I do it in such a way that he loses no autonomy.

so it’s grief, and yes, exhaustion. I am so, so tired.

I Feel just like you - my husband is in the early stages - some people say - "he seems fine"- but he has lost all his
confidence - even with basic tasks - he doesnt read now - or pay bills- cook a meal - prepare clothes etc make plans or socialize - i still go out to my aqua and meet a friends for coffee but i am now very aware of the time- and phone him to see if all is ok - we no longer cuddle - he has lost all empathy - he looks forever sad - and he never laughs - he can get very confused - and cant put anything in order - this week has been worse - we had some work done on the house and he found it difficult - i am exhausted - i have fibromyalgia - and feel so tired and worn down thinking and planning for both of us - he is slowly doing less and less -
worry what the future holds for both of us Neese

 

[sunshine chrissy]

I Feel just like you - my husband is in the early stages - some people say - "he seems fine"- but he has lost all his
confidence - even with basic tasks - he doesnt read now - or pay bills- cook a meal - prepare clothes etc make plans or socialize - i still go out to my aqua and meet a friends for coffee but i am now very aware of the time- and phone him to see if all is ok - we no longer cuddle - he has lost all empathy - he looks forever sad - and he never laughs - he can get very confused - and cant put anything in order - this week has been worse - we had some work done on the house and he found it difficult - i am exhausted - i have fibromyalgia - and feel so tired and worn down thinking and planning for both of us - he is slowly doing less and less -
worry what the future holds for both of us Neese

I feel the same,I have great family support but I've lost myself lately,I feel my life's been stolen from me,I'm becoming a different person,sadder each day.I sometimes wish I was him,he's completely unaware how I feel and what I do for him,I have no feelings left for him whatsoever and that makes me feel so guilty every day and scared about what's to come,he's just been diagnosed with frontotempural dementia at age 61

 

[sapphire turner]

Sunshine Chrissy I know what you mean about sometimes wishing our roles were reversed. People often talk about our need for empathy for our PWD and how bad it is for them. But to me my OH seems oblivious of any responsibility or need to consider other peoples’ feelings (yes I know that comes with the disease) and he just sits round all day reading a book or watching telly whilst I do everything. Sometimes I wouldn’t mind swapping for a day.

Something else I have been thinking about recently is how this disease seems to have robbed me of our past as well as our present and future. My OH used to be so kind and thoughtful to me, so interested in what I had to say. But I am wondering now was it all a front to charm me and get his way? Is this mean spirited, jealous, sex obsessed person who he was underneath all along? Is it like lifting the curtain on the wizard of oz??

 

[JaxG]

@sapphire turner I know what you mean about being robbed of your past. My OH was never an easy man and the person he is now seems to be an extreme version of the person he always was without the good bits!! I wonder how I could have lived with someone like this for so many years, how I could have subjected my children to such a father, and I can barely remember any good bits! I just see everything now through a different lens of his anger, frustration and lack of empathy.

 

[sapphire turner]

Yes JaxG I feel exactly the same. If he had just died instead of getting ill like this it would have been so different, I could have kept the illusion up.
I am trying to find a more positive way to look at it all. I dare say my uncontrolled no filter inner child might be quite difficult to live with as well? Is it just part of the human condition to be deep down mainly thinking of what you want and lashing out at what annoys you??

Can anyone help me think some kinder thoughts about the man I lived with (fairly happily I think) for 25 years?

 

[Peter58]

This strikes a chord - loneliness, sadness and grief for what we had planned and will no longer do together, depression, guilt that in some way I’ve contributed to her illness (I know there is no reason why this should be the case) etc. My wife has recently diagnosed with young onset mixed dementia but in reality it’s been around for longer as it’s now 3 years since she was no longer able to work and Covid really delayed diagnosis. It’s been a struggle chasing appointments and treatment. I find myself doing almost everything at home and keeping track of things, making all the arrangements. Sometimes it seems to me that in another universe this would be seen as coercive which worries me. She spends most of the days weeding the grass but seems and says she is happy (so I know it is worse for others) but I worry I should be encouraging her to do more? It is sad to see her lose her confidence so much. I can get out on my bicycle or to the supermarket and leave her for a few hours but I wish so much we would do these things more together.
I’m sorry for all the other stories on here - but thank you for sharing as the similar experiences and emotions described do make me feel less alone.

 

[canary]

My OH used to be so kind and thoughtful to me, so interested in what I had to say. But I am wondering now was it all a front to charm me and get his way? Is this mean spirited, jealous, sex obsessed person who he was underneath all along?

Is it just part of the human condition to be deep down mainly thinking of what you want and lashing out at what annoys you??

People with dementia lose the ability to see things from other peoples view point, so they can only see the things that they want, their own needs and their own comforts. Usually people can balance their own needs against the needs of others, but when one side of the balance is missing all that is left are their own basic instincts.

People usually have filters so that when you think something uncharitable about someone else, or become irritated by them, these filters say "whoa! not a good idea!" before you say or do something. But with dementia, these filters are lost and they have no way of preventing these deep thoughts and instincts from coming to the surface.

We all carry the seeds of mean-spiritedness, jealousy, anger etc within us, but most people dont allow them to grow. Once dementia (especially dementia that affects the frontal lobes) robs them of empathy and destroys their filters these thoughts and instincts can flourish like weeds in a garden when there is no longer a gardener..

So yes, its the dementia.

 

[JaxG]

Yes JaxG I feel exactly the same. If he had just died instead of getting ill like this it would have been so different, I could have kept the illusion up.
I am trying to find a more positive way to look at it all. I dare say my uncontrolled no filter inner child might be quite difficult to live with as well? Is it just part of the human condition to be deep down mainly thinking of what you want and lashing out at what annoys you??

Can anyone help me think some kinder thoughts about the man I lived with (fairly happily I think) for 25 years?

Most professionals that I have spoken to have suggested that the aggression and lack of empathy in the PWD are often part of the original personality, and in my husband's case I would agree. But I have also been told that some people who were gentle can become aggressive, and vice versa. Whatever the truth, it is no compensation when you are a carer and trying to cope.

 

[JaxG]

This strikes a chord - loneliness, sadness and grief for what we had planned and will no longer do together, depression, guilt that in some way I’ve contributed to her illness (I know there is no reason why this should be the case) etc. My wife has recently diagnosed with young onset mixed dementia but in reality it’s been around for longer as it’s now 3 years since she was no longer able to work and Covid really delayed diagnosis. It’s been a struggle chasing appointments and treatment. I find myself doing almost everything at home and keeping track of things, making all the arrangements. Sometimes it seems to me that in another universe this would be seen as coercive which worries me. She spends most of the days weeding the grass but seems and says she is happy (so I know it is worse for others) but I worry I should be encouraging her to do more? It is sad to see her lose her confidence so much. I can get out on my bicycle or to the supermarket and leave her for a few hours but I wish so much we would do these things more together.
I’m sorry for all the other stories on here - but thank you for sharing as the similar experiences and emotions described do make me feel less alone.

Hi @Peter58 it is exhausting isn't it. My OH accuses me of controlling him, but like you I have no choice. He has no executive function, and whilst he can feed himself, is not incontinent and can be left for a few hours, he has no short term memory and cannot manage any aspect of his life. It is heart breaking, it destroys both lives - the patient and the carer.

 

[canary]

Most professionals that I have spoken to have suggested that the aggression and lack of empathy in the PWD are often part of the original personality

I would respectfully maintain that any professional who suggests this doesnt actually know much about the realities of dementia.

Its definitely the dementia. The frontal lobes are the control centre of the whole brain - as well as working out strategies and solving puzzles, they regulate the emotions, provide filters for responses, give us the ability to have "second thoughts" and so see ourselves as others see us as well as the ability to see things from others point of view.

Dementia damages all parts of the brain and once it damages the frontal lobes there are huge personality changes

 

[Greenway]

My husband is in the early stages of Alzheimer’s, which makes it sound as tho it’s easy, but it isn’t! He can be left alone for 2-3 hours, and doesn’t need help with dressing, toileting or eating. He is charming, funny and affectionate and when we are in company, no-one seems to notice any difference, altho we have told most of our family and friends. He is accepting of his condition. A family member gives me respite when I need it. We don’t have money worries. Really, my circumstances are very good.

So what’s my problem? It’s grief. And not anticipatory grief either. I’ve already lost my best friend, my best companion and my greatest supporter. Other friendships and family just don’t begin to fill the gap. At times, I’m desperately lonely, I feel as though I have lost myself as well, as there is no time or freedom to do the things that keep me mentally well. Even when I’m out with friends, going to a class etc, I feel lonely. people are very kind, but somehow their kindness isn’t what I need. I’ve tried support groups, but they are not for me at the moment, as everyone in them seems to be at a much later stage.

His anxiety about every detail is hard to bear, especially as he never used to be an anxious person. Yesterday he told me he’d had a dream in which I left him somewhere, and didn’t come back. I realise that subconsciously he fears I will not be around for him, although I always will be. It feels imprisoning, but at the same time I can understand his fear and it grieves me that he should be so scared.

The one thing that keeps me going is feeling proud of the care I give. I work very hard at giving him as much autonomy as possible. I work hard at keeping him awake and interested. I rejoice in being able to make him laugh. I ensure he makes appointments, has nutritious food and takes his meds, but I do it in such a way that he loses no autonomy.

so it’s grief, and yes, exhaustion. I am so, so tired.

The psychological exhaustion is the worst, it saps your energy, your enthusiasm and it’s so hard to achieve even a quarter of what you feel you should be able to achieve. My husband was very outgoing, intelligent, worked until 75 as a hospital consultant. He was the driving force in our marriage and was always planning something new.
Now after being hospitalised for aggressive and paranoid behaviour and of course medicated he’s a shadow of his former self. It’s now me that has to instigate any outings, deal with financial issues etc and I just don’t have the energy for it .
The only thing I say to myself over and over is”don’t feel sorry for yourself “ . Seems to work most of the time

 

[sapphire turner]

Maybe it’s not useful to extrapolate (backwards?) current extended bad behaviour and previous (pre- dementia) isolated outbursts. I wonder if there is any relationship to what kind of drunk they used to be, if over indulging? Presumably that lowered inhibitions too.
My OH used to hold his drink pretty well, but there were occasions when he was pretty lairy on having a few. My previous husband was a happy silly drunk, but more nasty in real life
Interesting theories but how helpful?? Still looking to find a more loving response to bad behaviour

 

[sunshine chrissy]

Sunshine Chrissy I know what you mean about sometimes wishing our roles were reversed. People often talk about our need for empathy for our PWD and how bad it is for them. But to me my OH seems oblivious of any responsibility or need to consider other peoples’ feelings (yes I know that comes with the disease) and he just sits round all day reading a book or watching telly whilst I do everything. Sometimes I wouldn’t mind swapping for a day.

Something else I have been thinking about recently is how this disease seems to have robbed me of our past as well as our present and future. My OH used to be so kind and thoughtful to me, so interested in what I had to say. But I am wondering now was it all a front to charm me and get his way? Is this mean spirited, jealous, sex obsessed person who he was underneath all along? Is it like lifting the curtain on the wizard of oz??

sapphire turner food for thought there! I'm spending too much time lately going back over the past,he's my children's step dad and they think the world of him,we've been together 26 years and he's never been an angry or aggressive man,still isn't yet but he's always controlled any decisions about holidays,nights out,what pets he wants(I don't like dogs but of course agreed to 2 dogs years ago)he wouldn't eat this,didn't like that,we're not going in that pub,dont buy me that I won't wear it,you get the picture! Now look at us,roles reversed,I dont even want the damn role.We split up a few times over the years and now I'm of course thinking if I could have looked into the futureLuckily I can escape for a few hours a few times a week but now he's started phoning every 15 mins- where are you,when you coming home-still controlling but now it's dementia controlling me not him.Sorry for the rant,had a bad day today,tomorrow may be different

 

[sapphire turner]

Chrissy you could be describing my life! I had a moment 5 years ago when we were going through a bad patch and I had a good idea of how things were going dementia- wise. I thought if I was going to leave now is the time, no-one else has noticed yet. But I made a conscious decision to stay (why? ) and I now feel I have to stick to that, for better or worse.
I suppose we need to let go of how we got here and plan survival tactics instead.
I am so sorry that you and other people on this forum are going through these dilemmas, but I am so glad to have your company in this mad journey. Sending love to all xx

 

[canary]

Hi @sapphire turner
I am not sure that there is a "loving solution" to frontal lobe behaviour.
I do not mention my OH in detail very much, but I was told several years ago that he had FTD, although this diagnosis was taken away a few years later and he currently has no diagnosis. I recognise all the things being discussed on this thread. I too considered leaving him, but didnt. I no longer feel that I love him, but I recognise that he is ill. As things have progressed the bad behaviour has (mostly) gone and he is easier to deal with, but it has left a sort of emptiness and he is beginning to exist in his own little bubble.

I have coped by stepping back emotionally and pretending that I am a professional carer and he is my client. No, its not a loving response, but it is survival and sometimes thats all there is.

 

[sapphire turner]

Thanks Canary I think your approach is a sensible one. I am trying to row back on the grief, guilt and soul searching and try to concentrate on my long term survival, for both our sakes.

 

[SueLM]

Oh my goodness! This is 100% me and my life. I miss the man I married. Its so hard and only if you are going through it so you understand. His to you x

My husband is in the early stages of Alzheimer’s, which makes it sound as tho it’s easy, but it isn’t! He can be left alone for 2-3 hours, and doesn’t need help with dressing, toileting or eating. He is charming, funny and affectionate and when we are in company, no-one seems to notice any difference, altho we have told most of our family and friends. He is accepting of his condition. A family member gives me respite when I need it. We don’t have money worries. Really, my circumstances are very good.

So what’s my problem? It’s grief. And not anticipatory grief either. I’ve already lost my best friend, my best companion and my greatest supporter. Other friendships and family just don’t begin to fill the gap. At times, I’m desperately lonely, I feel as though I have lost myself as well, as there is no time or freedom to do the things that keep me mentally well. Even when I’m out with friends, going to a class etc, I feel lonely. people are very kind, but somehow their kindness isn’t what I need. I’ve tried support groups, but they are not for me at the moment, as everyone in them seems to be at a much later stage.

His anxiety about every detail is hard to bear, especially as he never used to be an anxious person. Yesterday he told me he’d had a dream in which I left him somewhere, and didn’t come back. I realise that subconsciously he fears I will not be around for him, although I always will be. It feels imprisoning, but at the same time I can understand his fear and it grieves me that he should be so scared.

The one thing that keeps me going is feeling proud of the care I give. I work very hard at giving him as much autonomy as possible. I work hard at keeping him awake and interested. I rejoice in being able to make him laugh. I ensure he makes appointments, has nutritious food and takes his meds, but I do it in such a way that he loses no autonomy.

so it’s grief, and yes, exhaustion. I am so, so tired.