It feels so bleak

[AliceA]

Gosh @AliceA ... so much going on for you.... don’t know where to start, other than to say I’m thinking about you with all your trials, tribulations and health problems, and I really hope you get some rest.
Love B xx

Quite a patch but feeling better. Latest thing was a daughter asked to borrow a tool. I am not sure we still have it. Everything was being searched! I got her to call him and tell him she has borrowed one. He started to go through the books, I said it would not be there as I sorted these the other day. He replied when you are desperate you will search everywhere. I think we have to try and realised there is a logic if not our logic. I think desperate was the clue, anxiety runs at such a high level with this disease. It seems sometimes like being anxious but not knowing or unstanding why. Xxx

 

[AliceA]

No @AliceA , he wouldn’t be happy handing cards out! The nice lady from Alzheimer’s society visited us yesterday. She tried to persuade us to start using a white board. I made the mistake of trying to talk about using one in the kitchen. NO... not having it... WON’T have one. He was very adamant.
I should have just got one, put it up, and waited to see if he noticed!
Living and learning every day.
I guess I’m never too old to learn, or am I!!
Love B xx

True, I am avoiding some of the overt suggestions for help aids. The person still has to remember to use it.
I have bought a weekly wall planner, I said it was for me as so much was going on. X

 

[canary]

anxiety runs at such a high level with this disease. It seems sometimes like being anxious but not knowing or unstanding why.

Same here. I think they know that Something Is Not Right, but the reason for it totally eludes them.

 

[Sad Staffs]

Today the LPAs arrived. All of this has been my responsibility for quite some time, and I’ve just got on with it, but now it is official, and suddenly I feel very alone. It is now real.

I worry about what is happening to my husband, I am terrified of what the future holds, I’m so worried about what the next round of surgical procedures in 3 weeks time will do. We know surgery has affected him before. Who knows what will happen this time.

But there is realisation ... what will happen to me when my husband’s dementia means he is unable to be a part of my life? I know that is the reality and there is nothing I can do to change it. Who will take care of me?

I’m lucky to be able to talk to people on TP, people that understand how I feel. But it is so hard sitting here with my thoughts racing like an express train. I’m not a negative person, but it is difficult to feel positive about the future.

 

[carolynp]

Today the LPAs arrived. All of this has been my responsibility for quite some time, and I’ve just got on with it, but now it is official, and suddenly I feel very alone. It is now real.

I worry about what is happening to my husband, I am terrified of what the future holds, I’m so worried about what the next round of surgical procedures in 3 weeks time will do. We know surgery has affected him before. Who knows what will happen this time.

But there is realisation ... what will happen to me when my husband’s dementia means he is unable to be a part of my life? I know that is the reality and there is nothing I can do to change it. Who will take care of me?

I’m lucky to be able to talk to people on TP, people that understand how I feel. But it is so hard sitting here with my thoughts racing like an express train. I’m not a negative person, but it is difficult to feel positive about the future.

Dear @Sad Staffs thank you for opening your heart. With your fears for your OH and for yourself, in the future, you give voice to the anguish of so many of us.

Who, indeed, will take care of us? Every time, almost, that I do something for my OH, I think, sadly but also in rage, “Who will do this for me?” These minute, meticulous levels of care that a well (and even an ill!) partner can provide, can really only be done by a partner.

Can you let your thoughts be your thoughts? Can you perhaps let them have their moment, but then turn your mind elsewhere? I fear it’s the only way not to be overwhelmed, though I’m not succeeding at present myself, I must say. Thinking of you.

 

[canary]

But there is realisation ... what will happen to me when my husband’s dementia means he is unable to be a part of my life? I know that is the reality and there is nothing I can do to change it. Who will take care of me?

We have to learn to take care of ourselves, but it is hard and I havent yet learned the trick

 

[Sad Staffs]

Thank you, @carolynp and @canary
It’s such a steep learning curve. Sometimes I feel it can’t get any worse, but I know from other posts that it can and will get much much worse. Then the memory team nurse visits and he chatters, answers questions, and I look at him and think what is going on. He will remember someone’s name from a tv programme that I can’t. Then he doesn’t remember what he and I do at least 8 times a day when changing his Incontinence pads. I have to tell him every step of the process, every time, every couple of hours, but he can’t think it through. I have to do it because he just can’t work it out.
I’m so busy looking after him that it’s like I’m not important any more.
What sort of existence is it? It’s an existence that cares and loves my husband. But it’s so hard.
Gosh, I miss my Mom, I wish she was here to make me better. I wish there was someone to make me better....
but I know I will get up tomorrow and it will all start again.
Sorry I’m such a misery, I think I need a cat to cuddle xx

 

[canary]

the memory team nurse visits and he chatters, answers questions, and I look at him and think what is going on. He will remember someone’s name from a tv programme that I can’t. Then he doesn’t remember what he and I do at least 8 times a day when changing his Incontinence pads.

Have you come across the term "Host/Hostess mode" on here Staffs? Thats whats happening here.
It is really strange the way they can sort of pull themselves together and suppress the dementia symptoms when they are seeing someone they dont usually see (normally medical staff or other family members) so that they appear so much better than they really are. They cant maintain it for long though, and it really tires them out so that once that person has gone they are left really grumpy!

 

[pixie2]

Thank you for your comments... I always find it supportive knowing that there are people who really understand.
I just find it confusing. The symptoms he has seem to straddle early onset but mostly I feel he has some symptoms described as later stages. With others, family, friends and professionals, he holds it together and he seems more or less ok. Sometimes, in front of others, I look at him and question myself.
But they don’t see what I do. No one has seen him lose it and his aggression. Yes, they can see his poor balance and mobility, but they don’t see his obsession, that he can’t write hardly at all, that he can’t put his own Incontinence pads on, that I have to tell him every time what he has to do, on things he does numerous times every day.
I used to think he was being lazy mentally, he blamed everything on his being dyslexic. This was a few years ago. Now I wonder whether his Alzheimer’s had already started.
I just want him back, I know that will never happen, and I know I have to stop thinking about myself... and take each day as it comes, and be thankful that I still have him.
Again, thank you for being there x

Same here. Mam is not properly diagnosed as nobody else sees it. Yes she shouts at carers but they are so used to it

 

[Manc70]

Thank you, @carolynp and @canary
It’s such a steep learning curve. Sometimes I feel it can’t get any worse, but I know from other posts that it can and will get much much worse. Then the memory team nurse visits and he chatters, answers questions, and I look at him and think what is going on. He will remember someone’s name from a tv programme that I can’t. Then he doesn’t remember what he and I do at least 8 times a day when changing his Incontinence pads. I have to tell him every step of the process, every time, every couple of hours, but he can’t think it through. I have to do it because he just can’t work it out.
I’m so busy looking after him that it’s like I’m not important any more.
What sort of existence is it? It’s an existence that cares and loves my husband. But it’s so hard.
Gosh, I miss my Mom, I wish she was here to make me better. I wish there was someone to make me better....
but I know I will get up tomorrow and it will all start again.
Sorry I’m such a misery, I think I need a cat to cuddle xx

Hi Sad Staffs, there is no rhyme or reason to these awful symptoms - my OH is the same, he will tell me the definition of a word I’m not sure of or the answer to a crossword clue (although he can’t figure out how to fill the crossword in) but then after a doze in the afternoon he will ask for his breakfast thinking it’s morning. Just one small example of what feels like a thousand ‘different’ things in our life. I’m so sorry you are without your mum and missing her so much. I lost my mum 25 years ago now but think about her often, especially when I am feeling frightened and hopeless about the future, feeling she would know what to do and make it right. I wish I could make us better but hope the support you get on here goes some way to helping you not feel alone. Wish we could have a coffee, talk about the love we have for our men and what they were like ‘back in the day’ and then have a really good moan (understatement!) about what is happening to our lives. Take good care. X

 

[Sad Staffs]

Have you come across the term "Host/Hostess mode" on here Staffs? Thats whats happening here.
It is really strange the way they can sort of pull themselves together and suppress the dementia symptoms when they are seeing someone they dont usually see (normally medical staff or other family members) so that they appear so much better than they really are. They cant maintain it for long though, and it really tires them out so that once that person has gone they are left really grumpy!

That certainly happens, but the person closest to me and who I see every couple of weeks can see how he is struggling to maintain some semblance of normality. He has also lost weight. When he had sepsis in March he lost 11 lbs in 10 days, he’s lost more weight since. He’s eating well, but losing about a pound a fortnight.
I just feel that there will never be normality again.
I had no idea the impact dementia can have on loved ones.
Bxx

 

[Sad Staffs]

Hi Sad Staffs, there is no rhyme or reason to these awful symptoms - my OH is the same, he will tell me the definition of a word I’m not sure of or the answer to a crossword clue (although he can’t figure out how to fill the crossword in) but then after a doze in the afternoon he will ask for his breakfast thinking it’s morning. Just one small example of what feels like a thousand ‘different’ things in our life. I’m so sorry you are without your mum and missing her so much. I lost my mum 25 years ago now but think about her often, especially when I am feeling frightened and hopeless about the future, feeling she would know what to do and make it right. I wish I could make us better but hope the support you get on here goes some way to helping you not feel alone. Wish we could have a coffee, talk about the love we have for our men and what they were like ‘back in the day’ and then have a really good moan (understatement!) about what is happening to our lives. Take good care. X

How I would love that... and mines a flat white, I need the caffeine!
All that you said is happening here, all so similar...
But then he does or says something and I do a double take. It’s like I just don’t know or understand this man I have loved and lived with for 44 years!
My Mom died in 1987, she was wonderful, never criticised me even though she would have been justified. She had an identical twin, who took me under her wing when Mom died. Or did I take her under my wing?! Whichever, it was like having Mom for another 11 years. I have their chiming mantle clocks, in adjacent rooms I hasten to add, so they talk to me, and I talk to them!! Yes, I know I would be considered by most as strange, but I get comfort from them....
Perhaps, one day hopefully soon, TP will set up opportunities for carers to get together, because I am so grateful to you for your post. It would be lovely to meet you for that flat white and a chocolate muffin.
Take care and thank you. B xx

 

[Manc70]

How I would love that... and mines a flat white, I need the caffeine!
All that you said is happening here, all so similar...
But then he does or says something and I do a double take. It’s like I just don’t know or understand this man I have loved and lived with for 44 years!
My Mom died in 1987, she was wonderful, never criticised me even though she would have been justified. She had an identical twin, who took me under her wing when Mom died. Or did I take her under my wing?! Whichever, it was like having Mom for another 11 years. I have their chiming mantle clocks, in adjacent rooms I hasten to add, so they talk to me, and I talk to them!! Yes, I know I would be considered by most as strange, but I get comfort from them....
Perhaps, one day hopefully soon, TP will set up opportunities for carers to get together, because I am so grateful to you for your post. It would be lovely to meet you for that flat white and a chocolate muffin.
Take care and thank you. B xx

I’m a Latte girl although do enjoy a flat white and never say no to a muffin. What a lovely thought to have it together. I have a few lovely friends I occasionally get to meet up with for coffee but gone are the days we go off shopping and lunch etc. One phoned earlier to tell me her and her husband were back from their “fantastic” trip to Paris and Versailles - I hate myself for it but I felt so envious and upset when I came off the phone when normally I would love hearing about it. She could have told me she was back from Blackpool and I’d have felt the same - I don’t like being this person, I’ve always been thankful and happy with my lot and honestly not envied other people - I don’t want to begrudge other people their happiness. I hope you understand what I mean because I read it back and it sounds so selfish of me.
Loved hearing about your dear mums twin, how lovely to have had her in your life looking out for each other. And their chiming clocks - fabulous, not at all strange and whatever is a comfort to you, a lovely story.
My OH has another hospital appointment tomorrow with the neurologist, a follow up after starting him on medication. I hope you have or have had a peaceful night’s sleep. Xx

 

[try again]

If he's losing weight quickly has he been checked by the doctors recently in case something else is going on?

 

[AliceA]

Hi Sad Staffs, there is no rhyme or reason to these awful symptoms - my OH is the same, he will tell me the definition of a word I’m not sure of or the answer to a crossword clue (although he can’t figure out how to fill the crossword in) but then after a doze in the afternoon he will ask for his breakfast thinking it’s morning. Just one small example of what feels like a thousand ‘different’ things in our life. I’m so sorry you are without your mum and missing her so much. I lost my mum 25 years ago now but think about her often, especially when I am feeling frightened and hopeless about the future, feeling she would know what to do and make it right. I wish I could make us better but hope the support you get on here goes some way to helping you not feel alone. Wish we could have a coffee, talk about the love we have for our men and what they were like ‘back in the day’ and then have a really good moan (understatement!) about what is happening to our lives. Take good care. X

Life is certainly unpredictable, but as you said our deep love for our men who are still there under the thick coat, what joy to see a glimpse now and again.

 

[AliceA]

Today the LPAs arrived. All of this has been my responsibility for quite some time, and I’ve just got on with it, but now it is official, and suddenly I feel very alone. It is now real.

I worry about what is happening to my husband, I am terrified of what the future holds, I’m so worried about what the next round of surgical procedures in 3 weeks time will do. We know surgery has affected him before. Who knows what will happen this time.

But there is realisation ... what will happen to me when my husband’s dementia means he is unable to be a part of my life? I know that is the reality and there is nothing I can do to change it. Who will take care of me?

I’m lucky to be able to talk to people on TP, people that understand how I feel. But it is so hard sitting here with my thoughts racing like an express train. I’m not a negative person, but it is difficult to feel positive about the future.

Dearest Staffs, you will, life will and the very essence of what you shared will. We all fall into the trap of looking too far ahead when we feel low. The only thing we really have is the small window of NOW, we get can things into place but that is all. Looking back I am constantly surprised how my strength has grown with the problem in ways I could not have imagined.

 

[kindred]

Thank you, @carolynp and @canary
It’s such a steep learning curve. Sometimes I feel it can’t get any worse, but I know from other posts that it can and will get much much worse. Then the memory team nurse visits and he chatters, answers questions, and I look at him and think what is going on. He will remember someone’s name from a tv programme that I can’t. Then he doesn’t remember what he and I do at least 8 times a day when changing his Incontinence pads. I have to tell him every step of the process, every time, every couple of hours, but he can’t think it through. I have to do it because he just can’t work it out.
I’m so busy looking after him that it’s like I’m not important any more.
What sort of existence is it? It’s an existence that cares and loves my husband. But it’s so hard.
Gosh, I miss my Mom, I wish she was here to make me better. I wish there was someone to make me better....
but I know I will get up tomorrow and it will all start again.
Sorry I’m such a misery, I think I need a cat to cuddle xx

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

 

[Grannie G]

Perhaps, one day hopefully soon, TP will set up opportunities for carers to get together, because I am so grateful to you for your post. It would be lovely to meet you for that flat white and a chocolate muffin.

I just want you to know @Sad Staffs occasional meet ups are arranged, not by Talking Point but independently by Talking Point members. I'm sure you would be made most welcome.

See this link;

https://forum.alzheimers.org.uk/forums/meet-ups-and-retreats.79/

 

[Sad Staffs]

I’m a Latte girl although do enjoy a flat white and never say no to a muffin. What a lovely thought to have it together. I have a few lovely friends I occasionally get to meet up with for coffee but gone are the days we go off shopping and lunch etc. One phoned earlier to tell me her and her husband were back from their “fantastic” trip to Paris and Versailles - I hate myself for it but I felt so envious and upset when I came off the phone when normally I would love hearing about it. She could have told me she was back from Blackpool and I’d have felt the same - I don’t like being this person, I’ve always been thankful and happy with my lot and honestly not envied other people - I don’t want to begrudge other people their happiness. I hope you understand what I mean because I read it back and it sounds so selfish of me.
Loved hearing about your dear mums twin, how lovely to have had her in your life looking out for each other. And their chiming clocks - fabulous, not at all strange and whatever is a comfort to you, a lovely story.
My OH has another hospital appointment tomorrow with the neurologist, a follow up after starting him on medication. I hope you have or have had a peaceful night’s sleep. Xx

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

 

[Sad Staffs]

Dearest Staffs, you will, life will and the very essence of what you shared will. We all fall into the trap of looking too far ahead when we feel low. The only thing we really have is the small window of NOW, we get can things into place but that is all. Looking back I am constantly surprised how my strength has grown with the problem in ways I could not have imagined.

Such wise advice @AliceA , I do find it difficult not being able to plan anything but especially events like birthdays, holidays, Christmas. In honesty they don’t really happen now. I can’t think beyond his operation on the 26th because I don’t know what will happen, or how much he might be changed by the impact.
I think what we are going through makes us stronger, or presumably some people just cave in. I’ve always been known as a tough old bird! Even when I was young! But now I just do it, all of it, who else is going to, but how I would love to feel that not everything is my responsibility. I would love to be taken care of. Take care, and thank you for your advice xx