It feels so bleak

[Sad Staffs]

Sweetheart, of course you matter, of course you are important, ever so important to us. It's a very hard existence. It's too hard really. It is an honourable existence, to allow someone else to be in this world, as you are, but it is relentless and just too hard, I know, you know I know.
All thoughts and sympathy and with you in spirit.
Sweetheart, I know we call it hosting and all that, but most of us put on a good show for other people, it's what we do, and it wears us out. I think so called hosting is just that really, we all make an effort to be sociable when we have to. love and thoughts, Kindred, aka Geraldinexxxxxx

Thanks @kindred, Geraldine, I always love your posts.
And yes, we do make an effort in front of others, and that is exactly what my husband does in front of visitors, family, medics. It’s just me he doesn’t seem to make an effort for anymore, I guess he doesn’t feel he has to.
I still have the Marilyn Monroe vision in my mind thinking about you...
Thanks for the vision, love B xx

 

[Manc70]

Hi

I do hope your hospital visit has gone ok, and that the meds are helping your husband. They won’t medicate my husband because of his problems with his kidneys and bladder which was a disappointment.
I know how you feel about your friends holiday... I would love to visit Versailles, I don’t know your friend but I’m envious, not a nice trait but I think we are entitled to have these for all we have to do for our loved ones. It’s so hard knowing that we are never going to do the things we used to do, at least not while they are still here, living with us, and the alternative just doesn’t bear thinking about.
So we shouldn’t feel guilty about these feelings. We are allowed them, we have enough to put up with, that we go without, always putting ourselves second, being treated like we don’t exist... the list goes on.
I’m going to wind my clocks up now, and have a quick word with them!!
And thank you @Manc70 I had a good nights sleep... so rare these days.
Take care Bxx

Hi again, hospital visit went ok, thank you for asking, sad and strange but it’s like a proper outing. We get there early because of my worry about parking - I can’t just drop him off if I can’t get parked and say see you in the dept - I still can’t get my head round that he wouldn’t be able to find his way or take instruction from somebody telling him where to go. Anyway we have coffee and cake - lemon drizzle today (I’m going to be the size of a bus at this rate) but we saw the consultant on time thankfully. I wanted to know if it was Lewy Body Dementia which has been mentioned before as a maybe but the doctor (who I cannot fault in his care of my OH) not sure, said he is a complex case!! which I read as he doesn’t know, and increased the dosage of his Rivastigmine. It does seem to suit him - he seems to have gone into a fairly calm phase but I don’t know if it’s the meds or my increased efforts of going along with things, I would normally stand my corner and give as good as I got. Even that takes a lot out of you doesn’t it, having to suppress your natural instinct, like the anger and irritation has nowhere to go but I think it’s getting easier, I try and tell myself does it matter. I sometimes feel so defeated. Thank you for your wise words re feelings of guilt and I do agree, we are entitled to our own feelings whatever they may be. Take care xx

 

[Sad Staffs]

Hi

Hi again, hospital visit went ok, thank you for asking, sad and strange but it’s like a proper outing. We get there early because of my worry about parking - I can’t just drop him off if I can’t get parked and say see you in the dept - I still can’t get my head round that he wouldn’t be able to find his way or take instruction from somebody telling him where to go. Anyway we have coffee and cake - lemon drizzle today (I’m going to be the size of a bus at this rate) but we saw the consultant on time thankfully. I wanted to know if it was Lewy Body Dementia which has been mentioned before as a maybe but the doctor (who I cannot fault in his care of my OH) not sure, said he is a complex case!! which I read as he doesn’t know, and increased the dosage of his Rivastigmine. It does seem to suit him - he seems to have gone into a fairly calm phase but I don’t know if it’s the meds or my increased efforts of going along with things, I would normally stand my corner and give as good as I got. Even that takes a lot out of you doesn’t it, having to suppress your natural instinct, like the anger and irritation has nowhere to go but I think it’s getting easier, I try and tell myself does it matter. I sometimes feel so defeated. Thank you for your wise words re feelings of guilt and I do agree, we are entitled to our own feelings whatever they may be. Take care xx

Good to know how your visit to Hospital went. I’m pleased the medication seems to suit your husband, and it seems to be helping with his mood. Or, as you say, is it that you are on that steep learning curve and that is helping too? My husband is in a being difficult mood today.... I can’t help but get irritated... wish I didn’t, but I never seem to get any space! So I’m in a snapping mood and then I feel guilty.
I know what you mean about parking. An absolute nightmare, I have spent hours, or it seems like it, driving round in circles, big circles, looking for a space. In our case my husbands wobbly mobility and balance means that I’m terrified of him falling. It has happened, even on the way into hospital!
Cake. Lemon drizzle is good, don’t worry about the calories, you need the treat. Next time have two pieces with your latte, and don’t you dare have a skinny latte!
Guilt is forbidden today, as you have had enough with your Hospital visit.
Take care and lovely to talk to you. Bxx

 

[nitram]

I know what you mean about parking. An absolute nightmare, I have spent hours, or it seems like it, driving round in circles, big circles, looking for a space. In our case my husbands wobbly mobility and balance means that I’m terrified of him falling. It has happened, even on the way into hospital!

If he has not got a Blue Badge, have you considered applying for one?

 

[Sad Staffs]

If he has not got a Blue Badge, have you considered applying for one?

Yes we have one, but spaces are like gold dust at our main hospital x

 

[Manc70]

Good to know how your visit to Hospital went. I’m pleased the medication seems to suit your husband, and it seems to be helping with his mood. Or, as you say, is it that you are on that steep learning curve and that is helping too? My husband is in a being difficult mood today.... I can’t help but get irritated... wish I didn’t, but I never seem to get any space! So I’m in a snapping mood and then I feel guilty.
I know what you mean about parking. An absolute nightmare, I have spent hours, or it seems like it, driving round in circles, big circles, looking for a space. In our case my husbands wobbly mobility and balance means that I’m terrified of him falling. It has happened, even on the way into hospital!
Cake. Lemon drizzle is good, don’t worry about the calories, you need the treat. Next time have two pieces with your latte, and don’t you dare have a skinny latte!
Guilt is forbidden today, as you have had enough with your Hospital visit.
Take care and lovely to talk to you. Bxx

Hi, Confession time and I’m going to take your advise not to feel guilty - I’m sat here with a large glass of white thinking about starting our evening meal. OH is having a lie down. A stupid woman said to me this afternoon (after hospital visit) that it was hard when she lost her husband but it must be harder because I will lose the man he was while he was still here - out of the blue I broke down and she wanted to hug me!!! I’m sorry to hear you are having a tough day, you never know one day to the next do you, so difficult.
Talking about wine I used to love that feeling at the end of the working week of “the weekend starts here” - not necessarily with a drink but the thought that we could have a lie in for a couple of days. Now we never seem to get past 5.30am. I hope you have a peaceful weekend Sxx

 

[Sad Staffs]

Go with the wine... good for you, hope it’s a stress buster , at least for a while. Hope you see her again, have something planned to say!! Life keeps catching us by surprise, doesn’t it.
Having a lie in... what is that, forgotten it existed!
Enjoy the bottle, love B xx

 

[kindred]

Hi, Confession time and I’m going to take your advise not to feel guilty - I’m sat here with a large glass of white thinking about starting our evening meal. OH is having a lie down. A stupid woman said to me this afternoon (after hospital visit) that it was hard when she lost her husband but it must be harder because I will lose the man he was while he was still here - out of the blue I broke down and she wanted to hug me!!! I’m sorry to hear you are having a tough day, you never know one day to the next do you, so difficult.
Talking about wine I used to love that feeling at the end of the working week of “the weekend starts here” - not necessarily with a drink but the thought that we could have a lie in for a couple of days. Now we never seem to get past 5.30am. I hope you have a peaceful weekend Sxx

I have observed, since I found myself in this situation, that there is a kind of (probably unintentional?) league table out there of who is harder off than who. I am sorry that silly woman said that. I hold my hand up and say, what a thing to say! I think all of us get this kind of thing said to us. Grrrrrr .... there, it isn't often I rant. With love and fellow feeling, Kindred aka Geraldinexxxx

 

[Manc70]

I have observed, since I found myself in this situation, that there is a kind of (probably unintentional?) league table out there of who is harder off than who. I am sorry that silly woman said that. I hold my hand up and say, what a thing to say! I think all of us get this kind of thing said to us. Grrrrrr .... there, it isn't often I rant. With love and fellow feeling, Kindred aka Geraldinexxxx

Hi Geraldine, thank you. The woman in question phoned me last night and seemed genuinely sorry for, as she put it, “opening her big mouth without thinking” - it obviously had been on her mind. A lady who was stood next to me when the woman made her remark had just lost her husband to Az and she also broke down - it was a real tear fest........ I do hate that ‘whose situation and suffering is the worse’ and what I love is that it doesn’t exist on TP, everyone is so generous with their words of comfort, advice and understanding no matter what they are going through themselves. Love and best wishes S xxxx

 

[Sad Staffs]

It’s one of those days when, no matter what I do, or say, it’s wrong, causing him to be angry, swear and what seems like sheer venom.

Feeling a bit lost today. I don’t understand what is happening to my husband, I don’t understand dementia. Yes, I can read about it, what the symptoms are, but what does this mean for my husband, what does it mean for me. I hate this disease, if that is what it is. Is it a disease? All I know is that on days like today i defy anyone who isn’t living with someone with dementia, or lived with it, to have any idea what it is like for people like me.

I feel like I have lost him. Yet he is still here. I still love him, but I dont like how mean he can be to me. I feel like a convenience. Then he will do or say something and it’s lovely and it reminds me of how our life used to be such a short time ago. I am so fearful, as I know it isn’t advanced yet, or is it? I don’t know. What do I know? They say everybody with dementia is different, progress differently. Well that might be the case, but how does that help me. It certainly doesn’t help me to help him.

I don’t think I even know who I am anymore. Do I exist as a person in my own right anymore? I don’t think so.
Perhaps tomorrow will be better.....

 

[kindred]

It’s one of those days when, no matter what I do, or say, it’s wrong, causing him to be angry, swear and what seems like sheer venom.

Feeling a bit lost today. I don’t understand what is happening to my husband, I don’t understand dementia. Yes, I can read about it, what the symptoms are, but what does this mean for my husband, what does it mean for me. I hate this disease, if that is what it is. Is it a disease? All I know is that on days like today i defy anyone who isn’t living with someone with dementia, or lived with it, to have any idea what it is like for people like me.

I feel like I have lost him. Yet he is still here. I still love him, but I dont like how mean he can be to me. I feel like a convenience. Then he will do or say something and it’s lovely and it reminds me of how our life used to be such a short time ago. I am so fearful, as I know it isn’t advanced yet, or is it? I don’t know. What do I know? They say everybody with dementia is different, progress differently. Well that might be the case, but how does that help me. It certainly doesn’t help me to help him.

I don’t think I even know who I am anymore. Do I exist as a person in my own right anymore? I don’t think so.
Perhaps tomorrow will be better.....

Sweetheart, first of all good to hear from you. And next, from my time in Keith's nursing home, every day except Sunday, I can say that yes, everyone is different but they have a LOT of things in common. There are some sites which show the stages of dementia and on the whole I find they stack up with what I see. They can't tell you how long they go on for though.

Darling, I so understand about not existing as a person in your own right. I felt like this, a slave, no rights, a nothing. It helped for a few weeks when I wrote a list of the roles I did have, stuff like:
a mother
a wife
a friend
a gardener
a cook
a lover of books
a singer
oh well you get the idea. It showed me other roles I had at any point in the day. Some ancient philosopher type of person wrote that we are what we repeatedly do, and that's worth thinking about. Tell me what your other roles are? No pressure, it just helped me through.
I don't know if this is how you feel too, but I became a kind of beggar, inwardly hoping people would smile at me, be kind to me .. I became a kind of canvas on which people wrote their own lives, endlessly talking to me about their holidays, their trips away etc etc etc.
This business gets us very very low darling. I am glad you can come on here and say so. No, I so agree, only those of us who have done it can understand what being a prisoner of caring is like. with you all way.
Love and best, Geraldine aka kindred. xxx

 

[Sad Staffs]

Sweetheart, first of all good to hear from you. And next, from my time in Keith's nursing home, every day except Sunday, I can say that yes, everyone is different but they have a LOT of things in common. There are some sites which show the stages of dementia and on the whole I find they stack up with what I see. They can't tell you how long they go on for though.

Darling, I so understand about not existing as a person in your own right. I felt like this, a slave, no rights, a nothing. It helped for a few weeks when I wrote a list of the roles I did have, stuff like:
a mother
a wife
a friend
a gardener
a cook
a lover of books
a singer
oh well you get the idea. It showed me other roles I had at any point in the day. Some ancient philosopher type of person wrote that we are what we repeatedly do, and that's worth thinking about. Tell me what your other roles are? No pressure, it just helped me through.
I don't know if this is how you feel too, but I became a kind of beggar, inwardly hoping people would smile at me, be kind to me .. I became a kind of canvas on which people wrote their own lives, endlessly talking to me about their holidays, their trips away etc etc etc.
This business gets us very very low darling. I am glad you can come on here and say so. No, I so agree, only those of us who have done it can understand what being a prisoner of caring is like. with you all way.
Love and best, Geraldine aka kindred. xxx

Ah, Geraldine, what would I do without you.... thank you for always smoothing my fevered brow.
Yes, I’m a sponge to others, absorbing their lives but keeping mine to myself.
It’s always, how are you? I’m fine thanks. How is your husband? Oh, you know, he’s ok thanks!! We just don’t tell the truth... why? Probably because it’s easier not to bother.
But the fact that so many on TP get comfort from you, has to be a responsibility that must be hard for you, at times.
So I’m sorry if I’m selfish, but thank you for being there for me.
With love, B xx

 

[kindred]

Ah, Geraldine, what would I do without you.... thank you for always smoothing my fevered brow.
Yes, I’m a sponge to others, absorbing their lives but keeping mine to myself.
It’s always, how are you? I’m fine thanks. How is your husband? Oh, you know, he’s ok thanks!! We just don’t tell the truth... why? Probably because it’s easier not to bother.
But the fact that so many on TP get comfort from you, has to be a responsibility that must be hard for you, at times.
So I’m sorry if I’m selfish, but thank you for being there for me.
With love, B xx

It is a privilege and you are so helpful and supportive to me. Thank you. With love, GakaKxxxxx

 

[Lilac Blossom]

I feel like I have lost him. Yet he is still here. I still love him, but I dont like how mean he can be to me. I feel like a convenience.

Dear Sad Staffs I can identify so much with the above - I never realised that it was possible to experience this level of sadness - I have lost him yet he is still here.

Hugs from Lilac x

 

[Sad Staffs]

Dear Sad Staffs I can identify so much with the above - I never realised that it was possible to experience this level of sadness - I have lost him yet he is still here.

Hugs from Lilac x

Thanks @Lilac Blossom
Thank you for the hug... don’t get many these days!
I’m learning to do all the things my husband has done, and I’ve taken for granted. Not any more. There are so many things he just can’t do, and I struggle to understand why he can’t when he looks the same, and sometimes seems the same.
How can anyone be prepared for this?
But, I hope you are ok, and to let you know that I’m thinking of you. Bx

 

[Sad Staffs]

Ok, I’ve taken over all the technology roles, iPhone, iPad, computers, remote controls. Always had my husband to sort them when they wouldn’t work. Now I’m doing it and it’s more by luck than judgement!
I’ve always done the finance side of things, but decisions have always been jointly made. Not any more. Again it’s working out, fingers crossed!
I’ve taken over the driving, as he has had his licence rescinded. Up until last October I only drove back from the pub. Now I do it all.
This includes having to put fuel in, never done that before, but he can’t work out the pump at the garage.
I have yet to top up the oil or washers....
next i have to check tyres and put air in if necessary. I think I know what the pressures should be..... fingers crossed!
I cook all the meals. My mother would be horrified if she was alive to see me feeding the two of us with ready meals from Sainsbury’s!
Then the upcoming building work. New shower room mainly because of his Incontinence we need to change things.
So many things.... am I capable of all this..
My biggest fear is if something happens to me. Where does that leave my husband.
It’s a very lonely existence. Bx

 

[Starbright]

Hi @Sad Staffs ,I understand how you are feeling but I look at this every day ..I have a card at my bedside which reads, “You never know how strong you are until strong is all you can be”...I think even though we are very sad about our situation somehow we do what we have to do..
I too do everything but then throughout our marriage I always did,apart from the driving ,so it was a bit of a shock to suddenly have to drive again but I’m getting there albeit I don’t go too far yet.
Yesterday was rubbish and it carried on this morning but we walked out for his morning paper.it takes 15 minutes that’s all he can manage ,so he’s happy now and will read every inch.
Do take care and be kind to yourself we are only human. A x

 

[Sad Staffs]

Hi @Sad Staffs ,I understand how you are feeling but I look at this every day ..I have a card at my bedside which reads, “You never know how strong you are until strong is all you can be”...I think even though we are very sad about our situation somehow we do what we have to do..
I too do everything but then throughout our marriage I always did,apart from the driving ,so it was a bit of a shock to suddenly have to drive again but I’m getting there albeit I don’t go too far yet.
Yesterday was rubbish and it carried on this morning but we walked out for his morning paper.it takes 15 minutes that’s all he can manage ,so he’s happy now and will read every inch.
Do take care and be kind to yourself we are only human. A x

Thank you @Starbright, lovely support from a Staffordshire lass like me!
I’m glad you made it together to get the newspaper. It’s nice to hear that your husband is happy reading his newspaper. I wish my husband showed signs of happiness. I’m not sure where it has gone, but it has and I hate to see how withdrawn he is.
Do you manage to go to any organised sessions in Staffordshire?
It’s extra tough here at the moment because of all our worry about his surgery next week. I will be so glad when it is over and we know how he reacts to the anaesthetic.
Take care Starbright... B xx

 

[kindred]

Ok, I’ve taken over all the technology roles, iPhone, iPad, computers, remote controls. Always had my husband to sort them when they wouldn’t work. Now I’m doing it and it’s more by luck than judgement!
I’ve always done the finance side of things, but decisions have always been jointly made. Not any more. Again it’s working out, fingers crossed!
I’ve taken over the driving, as he has had his licence rescinded. Up until last October I only drove back from the pub. Now I do it all.
This includes having to put fuel in, never done that before, but he can’t work out the pump at the garage.
I have yet to top up the oil or washers....
next i have to check tyres and put air in if necessary. I think I know what the pressures should be..... fingers crossed!
I cook all the meals. My mother would be horrified if she was alive to see me feeding the two of us with ready meals from Sainsbury’s!
Then the upcoming building work. New shower room mainly because of his Incontinence we need to change things.
So many things.... am I capable of all this..
My biggest fear is if something happens to me. Where does that leave my husband.
It’s a very lonely existence. Bx

Oh sweetheart, I know. Me too. I used to often ask the social workers, what happens if something happens to me, and I don't know if this still applies, they said that emergency respite is available, through something we have here called care direct who has a phone number (obviously),. This made me a bit less afraid. I also went to see a couple of care homes, so I knew what I was referring to if I had to ask for sudden help.
Well done, oh so well done on all the things you do. All love and thoughts, Geraldinexxxx

 

[Starbright]

No he will not do anything he doesn’t want to do and as for support etc that’s a very definite no no.We had the occupational therapist last week who was lovely by the way..recommended aids are coming on Monday..But he’s not going to use them ...however she is also coming back next week to take him for a walk with a stick...that should be fun !!
I do wish you and oh well for the forthcoming surgery.
Take care keep in touch A x