No one knows

[Banabarama]

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?

mine can’t walk so I do have some control. It’s the hopelessness and not being able to help the situation which tears me to shreds. I sometimes think it’s all my fault, which it’s ridiculous I know, but I can’t help and if I was in that situation I know I would want to die. But I’m sure my OH doesn’t - he just wants it fixed. But there are no fixes for this disease. The fact that his symptoms aren’t the same as for others makes it worse as I often think - what if it’s all a mistake and he doesn’t have LBD after all. I’m rambling. But carer due soon and I will be off to work.

 

[Banabarama]

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?

 

[Banabarama]

mine can’t walk so I do have some control. It’s the hopelessness and not being able to help the situation which tears me to shreds. I sometimes think it’s all my fault, which it’s ridiculous I know, but I can’t help and if I was in that situation I know I would want to die. But I’m sure my OH doesn’t - he just wants it fixed. But there are no fixes for this disease. The fact that his symptoms aren’t the same as for others makes it worse as I often think - what if it’s all a mistake and he doesn’t have LBD after all. I’m rambling. But carer due soon and I will be off to work.

 

[Thethirdmrsc]

Oh how awful it all sounds. I too am having a rough time and am wondering is it possible to feel any more down. At what point does one just give up, do the caring and just forget everything else. I am struggling with housework, the garden is a mess and I drink too much wine and eat lazily and badly (although I promise that OH eats very well). Have cut my working week to 3 days (i have carers when I’m out) thinking that would help but It hasn’t I tell myself to pull myself together but that is easier said than done as I guess many of you will know know.

I have had to really cut down the drink, too much of a crutch, but I have a double gin at 5pm, and wine at the weekend. He doesn’t have anything now. And the part time job has gone, roll on the pension in 4 yrs time!

 

[Thethirdmrsc]

I think they call it 'carer's burnout' and even though I have had a beautiful garden, I am afraid it is looking very forlorn. It is trying to tell me that spring is coming and to get out there and do something.

My husband spills stuff over the floor and the cupboard doors and I feel like throwing one of his endless cups of tea at him. But then I would have to clean up another mess.

I am retired so don't have to drag myself off to work but I do force myself to get out of the house so he can't argue with me. He has now started getting up in the middle of the night, waking me up and leaving lights on all over the house. I think at some stage, especially if you have been a carer for a number of years, then it feels like hitting a brick wall.

I have no answers for you. The things that use to get me through don't work anymore.

Oh the mess! Crumbs and food everywhere, and the loo spills. We moved so I could have my own bathroom, but he uses it, so I keep the mop in there now.

 

[Lawson58]

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?

Your husband sounds so much worse than mine and I think you need respite so much.

I have watched documentaries about dementia and the patients are obvious in their presentation of the disease, even without spending time with them. They show the common behaviours of wandering, wanting continuously to go home, inability to things for themselves. My husband doesn't do anything like thatbut I think if your husband is confused about who you are then it should be obvious to others.

I get thoroughly frustrated that carers of people with dementia are treated so differently to those care for cancer patients, disabled people and some debilitating conditions. They deserve every bit of help they can get and those cases are often the ones that get the publicity on TV, not too many about PWD and their carers.

But we know.

 

[Carocavalier]

No one knows, except on here, what life is like. If my OH was “normal” I would be in whats considered a coercive or abusive relationship, and would be encouraged to leave. But because he has Alzheimer’s, I am expected to suddenly acquire a medical degree so I can find out his triggers and deal with them. I am weary, and becoming hard and hateful, and very unhappy. Changes will have to happen.

I know exactly what you mean. I feel sometimes that I can no longer carry on living with him, but due to his condition I cannot think of leaving. Some days it just seems that I have no life, & am constantly being belittled & put down. Then suddenly things change, & we muddle on until the next time he has a bad phase. I dont help by arguing as well, instead of remembering he cant help it, & that it must be awful for him, but sometimes I just cant help myself. I must just try to remember that to keep calm will be better for everyone, but it is so hard. You are not alone, your post has helped me to realise there are others in my position as sometimes I feel so alone, so thankyou for sharing. I know its not easy.

 

[Cat27]

Welcome to TP @Carocavalier
I’m glad you’re finding TP helpful. Please keep posting as you’ll get lots of support here.

 

[Banabarama]

Your husband sounds so much worse than mine and I think you need respite so much.

I have watched documentaries about dementia and the patients are obvious in their presentation of the disease, even without spending time with them. They show the common behaviours of wandering, wanting continuously to go home, inability to things for themselves. My husband doesn't do anything like thatbut I think if your husband is confused about who you are then it should be obvious to others.

I get thoroughly frustrated that carers of people with dementia are treated so differently to those care for cancer patients, disabled people and some debilitating conditions. They deserve every bit of help they can get and those cases are often the ones that get the publicity on TV, not too many about PWD and their carers.

But we know.

I agree. It does feel as if we are treated differently. It’s a very lonely world. But, as someone commented earlier, being told “i know exactly what you’re going through” by someone who hasn’t been through it is worse. A district nurse came in recently, took a brief look at my husband who had some rashes I was nervous about, and said to me all was fine and that I was doing a grand job. Nothing else. Somehow even this managed to annoy me. I am losing my ability to check my resentment. I will try harder?

 

[Kapow]

I so can relate to all the posts on here...from January until June this year I had no contact with another living soul...couldn't leave the house due to husband wandering outside...contacts Social services,they arrange respite with a view to the stay being possibly permanent...fast forward and they say he must return home.No consideration of my feelings,even though at times I feel I am merely an extension of him,and not a person in my own right.I used to do lots of work in the community,myself and a friend even turned on our town's Christmas lights,was Chair of our "in bloom" group...all gone,all friends gone except one.It's so heartbreaking.

 

[Thethirdmrsc]

I know exactly what you mean. I feel sometimes that I can no longer carry on living with him, but due to his condition I cannot think of leaving. Some days it just seems that I have no life, & am constantly being belittled & put down. Then suddenly things change, & we muddle on until the next time he has a bad phase. I dont help by arguing as well, instead of remembering he cant help it, & that it must be awful for him, but sometimes I just cant help myself. I must just try to remember that to keep calm will be better for everyone, but it is so hard. You are not alone, your post has helped me to realise there are others in my position as sometimes I feel so alone, so thankyou for sharing. I know its not easy.

I spoke to a lady at day care today, and she asked if mine was also a Jekyll and Hyde character, and I said yes. It’s 5.30pm and Mr Hyde is out. It’s very hard, so stop when you feel you can do do more.

 

[Banabarama]

Just to add to the conversation again, when you meet someone and they ask about your husband and that is all, it can be a bit soul destroying. Maybe I am seeking sympathy - I’m sorry, but on these down days that’s all I want - however pointless and self indulgent it may seem. But on the bright side I do have two friends who always ask how I am first. So I know I’m fortunate there.

 

[Banabarama]

Just to add to the conversation again, when you meet someone and they ask about your husband and that is all, it can be a bit soul destroying. Maybe I am seeking sympathy - I’m sorry, but on these down days that’s all I want - however pointless and self indulgent it may seem. But on the bright side I have two friends who always ask how I am first. So I know I’m fortunate there.

 

[Lawson58]

I have a few friends who all are having or have had experience of caring for a person with dementia and we do all ask how things are going with their parent or spouse. But it does lead into general conversation about how we are dealing with the situation and one friend in particular always finds the time to chat about our own personal feelings, in particular how family don't get it.

Sadly, Covid has disrupted our group hugely and of course, being in our age group a few have had to deal with losing a family member as well.

The orthoptist at my eye specialist has a mum with late stage Lewy Body and mostly we talk about the valuable lessons her children have gained from the experience.

The girl who cleans my house has a step dad with Parkinson's and related dementia so she tends to unload on me because in her words 'I get it.'

The thing is that all these people understand because they have that connection.
But we don't need to have a connection to understand cancer, brain trauma etc to have empathy for those patients.

 

[Little moth]

I had a bittersweet day yesterday. I saw him on whatsapp telling my sister that I had left him. I also heard him telling our daughter that her mother had left him. luckily they were aware of the situation. Our daughter came round after work, I don't know how I got through it, but I did.
For several continuous days he hasn't known me, asked after my husband etc, then sometimes fleeting gestures today as if he knew who I was, even said he loved me. I said what about your wife and he said she had dumped him. On helping him into bed he asked where did you go.
I wonder who I will be when he wakes up. does it usually fluctuate like this, putting his arm round my shoulders while I was looking out of the window was like a knife through me. But he didn't know me.
Thank you for the flowers @DesperateofDevon

 

[Vitesse]

I had a bittersweet day yesterday. I saw him on whatsapp telling my sister that I had left him. I also heard him telling our daughter that her mother had left him. luckily they were aware of the situation. Our daughter came round after work, I don't know how I got through it, but I did.
For several continuous days he hasn't known me, asked after my husband etc, then sometimes fleeting gestures today as if he knew who I was, even said he loved me. I said what about your wife and he said she had dumped him. On helping him into bed he asked where did you go.
I wonder who I will be when he wakes up. does it usually fluctuate like this, putting his arm round my shoulders while I was looking out of the window was like a knife through me. But he didn't know me.
Thank you for the flowers @DesperateofDevon

It is extremely hard, but you get used to it! About two years ago, my husband suddenly said that his wife had left and gone to her sister’s. I tried to tell him I am his wife, but he wouldn’t believe me. After a week or two he started saying his wife had left and now she had died! He looked at photos of us and would always say she had died. Friends tried saying it was me, but the easiest thing was to go along with it. I seemed to have taken her place and he liked me. I then had to contend with questions about myself, was I married? What was my surname? Had I worked? Where did I live?
it’s wearing, but what can you do besides grin and bear it?

 

[Carocavalier]

I spoke to a lady at day care today, and she asked if mine was also a Jekyll and Hyde character, and I said yes. It’s 5.30pm and Mr Hyde is out. It’s very hard, so stop when you feel you can do do more.

 

[Carocavalier]

Thanks so much for replying. Means a lotx

 

[Sunshine2*]

Hi,
My husband is continually asking, “What town are we living in at the moment?”
We’ve lived in this house for 29 years.
He needs directions for the toilet, which is directly at the top of the stairs, where the stairlift finishes. He spends his entire day going up and down the stairlift, obviously, I attend to his catheter.

He often doesn’t know who I am!
I’m the person that does everything for him apparently.
Sometimes he tells me that his wife has died…
The continuous same questions minute after minute all day!
He requires step by step instructions, as he frequently is unaware what to do next.
I speak constantly with him, he follows me around, needing constant reassurance and confirmation that I’m there even if I’m prepping vegetables in the kitchen.
I have to help him outside to sit on the garden bench, whilst I’m gardening.
If we have a dental or optician appointment for him, then I try to make a day of it; a meal out, showing him various areas whilst I’m pushing him in his wheelchair.
It really is a 100% focused life caring for him.
My very best wishes to you all.

 

[Little moth]

Thank you for all your comments , I realise that there are people who understand and I am gradually finding my way to deal with this awful condition. Fingers crossed, I've managed to get through the day without crying, Inspite of him telling people about it, how I've left him. so, so, cruel.