Bank holiday blues

[sapphire turner]

At home on our own this long weekend- think I am going crazy. My husband doesn’t say much, he is generally somewhere between angry and depressed. It’s like living with a dementor. I do really try to stay cheerful and positive but I am on my knees tonight. Looking forward to escaping to go to Tesco’s tomorrow- tho he will want to come with me and I will have to say no. It feels like the life is ebbing out of me. I have a carer taking him out two mornings a week, I am lucky compared to many people in my situation.
I wish I could cope better. Sending love to you all ❤️xxx

 

[maisiecat]

Hi @sapphire turner ,your post resonated with me as thats how things used to be for me. My husband is now in a Nursing home which can be equally distressing but I so remember how long even ordinary weekends felt and then the extra day.
There's nothing wrong with you or your ability to cope but living with a PWD is a very lonely place. I could put a couple of activities in during the week but there is nothing on at the weekends or my husband's mobility wasn't good enough to go.
I think loads of the group will feel exactly yhe same and often when people seem like they are coping they can just be frozen with the horror of it.
Be kind to yourself xx

 

[genevieve 76]

Just wanted to say hi, totally understand what you say about life ebbing out of you, sometimes feel the same, and you might think you're not coping but you are, we're all just muddling through doing the best we can. Hope there's a coffee shop near tesco or even a seat outside so you can have five mins peace.

 

[maggie6445]

Hi @sapphire turner , another here who finds a bank holiday Monday boring. . we go out quite a lot but avoid bank hols as parking is difficult, never enough disabled spaces and because OH mobility is very poor we don't do crowds too well.

My OH has just asked me if I'm going home and when the others are coming!. I told him it's my house and he came to live with me so I could care for him . He gave me a lovely smile but I could tell he doesn't really understand our relationship anymore.

We're getting an NHS wheelchair delivered tomorrow 🙂 hope it will mean we can go out for walks . Would have liked to have gone to bank hol events,maybe a wheelchair will mean we can, although I know it will present new problems too!

Any how,I digress, I understand your frustration .

 

[sapphire turner]

Thanks everyone you make me feel a bit less lonely and useless ❤️❤️❤️

 

[Bay Tree]

At home on our own this long weekend- think I am going crazy. My husband doesn’t say much, he is generally somewhere between angry and depressed. It’s like living with a dementor. I do really try to stay cheerful and positive but I am on my knees tonight. Looking forward to escaping to go to Tesco’s tomorrow- tho he will want to come with me and I will have to say no. It feels like the life is ebbing out of me. I have a carer taking him out two mornings a week, I am lucky compared to many people in my situation.
I wish I could cope better. Sending love to you all ❤️xxx

Going crazy - me as well! And it feels like the life I would like to have I'll now never know. I know some people may have worse things happening but you are doing what you can and staying positive cheerful all the time is a really big ask of anyone - I don't think anyone can do it. I don't feel lucky at all even though things aren't as bad as I know they are going to get. You are coping as well as you can and I'd like to give you a big hug. I feel that I try and do my best but my best is never good enough. Then I tell myself I'm only human and I can't do much more than I am now - not sure that helps me much! Hope your trip to Tesco is a good one. I'm getting excited about a trip to Dunelm this week to buy some new pillows!

 

[maggie6445]

Going crazy - me as well! And it feels like the life I would like to have I'll now never know. I know some people may have worse things happening but you are doing what you can and staying positive cheerful all the time is a really big ask of anyone - I don't think anyone can do it. I don't feel lucky at all even though things aren't as bad as I know they are going to get. You are coping as well as you can and I'd like to give you a big hug. I feel that I try and do my best but my best is never good enough. Then I tell myself I'm only human and I can't do much more than I am now - not sure that helps me much! Hope your trip to Tesco is a good one. I'm getting excited about a trip to Dunelm this week to buy some new pillows!

I'm excited about our new wheelchair delivery due tomorrow 🤣🤣

 

[Kevinl]

Thanks everyone you make me feel a bit less lonely and useless ❤️❤️❤️

You're not and thank you for posting. K

 

[Kevinl]

Sorry, useless that is that you're not,but maybe we can help with lonely too, all here to listen. K

 

[Oscar 10]

At home on our own this long weekend- think I am going crazy. My husband doesn’t say much, he is generally somewhere between angry and depressed. It’s like living with a dementor. I do really try to stay cheerful and positive but I am on my knees tonight. Looking forward to escaping to go to Tesco’s tomorrow- tho he will want to come with me and I will have to say no. It feels like the life is ebbing out of me. I have a carer taking him out two mornings a week, I am lucky compared to many people in my situation.
I wish I could cope better. Sending love to you all ❤️xxx

I have been feeling really lost this weekend too it’s just been a year since we had the diagnosis but I had noticed things were changing a few years ago I’m struggling to remember a life before it my husband talks to himself all the time and goes between ignoring me and talking about me then he wants to discuss something that happened twenty years ago and then asks me why I don’t remember it I’m lucky to remember last week let alone twenty years ago it honestly feels like I live alone as the person who was my husband is no longer here I try my best to get on with things but sometimes I just can’t I know it will get worse I don’t feel strong enough to face this for years to come I just want to put my coat on and leave most days and then he asks me what’s the matter with me I’m always miserable how does other people cope with this I feel so alone all the time he does not remember the diagnosis and is oblivious to the changes happening around us I’m sending you a big hug and say sometimes you have to rant a little and maybe feel angry for what should have been our twilight years that are no longer what we expected xxx

 

[sapphire turner]

Sorry, useless that is that you're not,but maybe we can help with lonely too, all here to listen. K

Kevini thanks for your kindness- I wonder how I will feel when this is over, I know that you find it hard. Bad as things are I can’t bring myself to wish him away, he was the love of my life and my best friend. I fear that although this is bad, worse is to come! ❤️

 

[sapphire turner]

I'm excited about our new wheelchair delivery due tomorrow 🤣🤣

Haha grateful for small distractions eh! ❤️

 

[sapphire turner]

I have been feeling really lost this weekend too it’s just been a year since we had the diagnosis but I had noticed things were changing a few years ago I’m struggling to remember a life before it my husband talks to himself all the time and goes between ignoring me and talking about me then he wants to discuss something that happened twenty years ago and then asks me why I don’t remember it I’m lucky to remember last week let alone twenty years ago it honestly feels like I live alone as the person who was my husband is no longer here I try my best to get on with things but sometimes I just can’t I know it will get worse I don’t feel strong enough to face this for years to come I just want to put my coat on and leave most days and then he asks me what’s the matter with me I’m always miserable how does other people cope with this I feel so alone all the time he does not remember the diagnosis and is oblivious to the changes happening around us I’m sending you a big hug and say sometimes you have to rant a little and maybe feel angry for what should have been our twilight years that are no longer what we expected xxx

Oscar 10 I really feel your pain, I don’t think our friends and families have any idea what it can be like going through this. I can only hope that when the real heavy lifting starts ahead (incontinence, getting lost etc) that people will be more supportive. If anyone else says ‘well he seems alright to me’ I swear I won’t be responsible for my actions! 😹😹😹❤️

 

[sapphire turner]

Going crazy - me as well! And it feels like the life I would like to have I'll now never know. I know some people may have worse things happening but you are doing what you can and staying positive cheerful all the time is a really big ask of anyone - I don't think anyone can do it. I don't feel lucky at all even though things aren't as bad as I know they are going to get. You are coping as well as you can and I'd like to give you a big hug. I feel that I try and do my best but my best is never good enough. Then I tell myself I'm only human and I can't do much more than I am now - not sure that helps me much! Hope your trip to Tesco is a good one. I'm getting excited about a trip to Dunelm this week to buy some new pillows!

I went to IKEA last week for a new duvet it was a real treat 😹😹😹❤️

 

[RM3]

I just wanted to send my best wishes to you all. You are an amazing group of people. I am not where you are (yet, if at all) but should it be the case, I know that I will be all the better prepared through the openly shared experiences on this forum. Thank you and I send a virtual hug x

 

[Kevinl]

Kevini thanks for your kindness- I wonder how I will feel when this is over, I know that you find it hard. Bad as things are I can’t bring myself to wish him away, he was the love of my life and my best friend. I fear that although this is bad, worse is to come!.

caring can be a lonely place, caring was hard , but as the line from the song goes "I'd trade all of my tomorrow's for a single yesterday" K

 

[sapphire turner]

♥️

 

[JaxG]

At home on our own this long weekend- think I am going crazy. My husband doesn’t say much, he is generally somewhere between angry and depressed. It’s like living with a dementor. I do really try to stay cheerful and positive but I am on my knees tonight. Looking forward to escaping to go to Tesco’s tomorrow- tho he will want to come with me and I will have to say no. It feels like the life is ebbing out of me. I have a carer taking him out two mornings a week, I am lucky compared to many people in my situation.
I wish I could cope better. Sending love to you all ❤️xxx

You are coping - it would be impossible to be upbeat all the time. You have retained your love for your husband through challenging behaviours and continue to care for him even when your life is broken. This disease destroys lives, both the PWD and their carer. I like you am pretty beaten down, my husband was a difficult man, this was vastly exaggerated by dementia and I am looking forward to the day my OH goes into care. The care home he goes to for respite is wonderful, he really enjoys his time there - he has companionship, three cooked meals a day, staff that go home for a break and come back the next day refreshed and positive. I know that my OH would not have been able to do for me what I have done for him and I honestly would rather be somewhere where I was cared for properly.
Have you considered Respite? Look after yourself and be proud of what a great job you are doing. xx

 

[Bevhar]

At home on our own this long weekend- think I am going crazy. My husband doesn’t say much, he is generally somewhere between angry and depressed. It’s like living with a dementor. I do really try to stay cheerful and positive but I am on my knees tonight. Looking forward to escaping to go to Tesco’s tomorrow- tho he will want to come with me and I will have to say no. It feels like the life is ebbing out of me. I have a carer taking him out two mornings a week, I am lucky compared to many people in my situation.
I wish I could cope better. Sending love to you all ❤️xxx

My husband has started getting angry with me I feel so upset as I’ve tried to remain positive I find it so hard as people always ask how he is our daughters say how’s Dad I don’t think people understand how hard it is for a career I have my own health issues but I really don’t care I wish I could just go to sleep & never wake up But that’s selfish that would mean my lovely daughters would have to cope with their Dad Do you have family support It’s very lonely isn’t it It’s bloody hard coping I feel exactly the same

 

[Bevhar]

I have been feeling really lost this weekend too it’s just been a year since we had the diagnosis but I had noticed things were changing a few years ago I’m struggling to remember a life before it my husband talks to himself all the time and goes between ignoring me and talking about me then he wants to discuss something that happened twenty years ago and then asks me why I don’t remember it I’m lucky to remember last week let alone twenty years ago it honestly feels like I live alone as the person who was my husband is no longer here I try my best to get on with things but sometimes I just can’t I know it will get worse I don’t feel strong enough to face this for years to come I just want to put my coat on and leave most days and then he asks me what’s the matter with me I’m always miserable how does other people cope with this I feel so alone all the time he does not remember the diagnosis and is oblivious to the changes happening around us I’m sending you a big hug and say sometimes you have to rant a little and maybe feel angry for what should have been our twilight years that are no longer what we expected xxx

This is exactly how I’m feeling I’d just like to run away unfortunately not an option