Bank holiday blues

[Ellie2018]

It’s blinking tough, I’ve just taken two anxiety tablets as I’m struggling to cope with the constancy if it. I know I should think I’m lucky as I’m not as bad as others. We’ve been out all day and other than having to be very conscious of where he is and what he is doing, everything was good. We have been home 3 1/4 hours and he hasn’t stopped, I’m just going up stairs, I’m just back, can I have a biscuit, can I go to the toilet, I’m back from the toilet, and on repeat every minute. Can I have a sandwich, yes and put it down 2 minutes later and he’s stood watching the dog eat it, second time in two days he’s given the dog his tea and even though I’ve just watched him he says he hasn’t. This is after 30 minutes between 2 am and 2.30 am of him saying he needs to go out, going outside in his pyjamas, looking for keys to the car, he has t driven in years. I’m shattered and just want to settle down for a while. I’ve been screaming and throwing newspapers around!

And as many say, family have no awareness or interest. His daughter is having him in Saturday and I can’t have the times until Wednesday so making it difficult for me to make any arrangements to do something in the 8 hours a year she has him - lives two minutes away.

Sorry to overtake your rant, it shows how many of us feel it’s hard. Hats off to people who can do it with good grace but I don’t think that’s me.

 

[sapphire turner]

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

Ah thanks Jax you make me feel less rubbish ❤️❤️❤️

 

[sapphire turner]

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

Hi Bevhar my three daughters and my sister are very supportive but sometimes I can’t bring myself to tell them how **** things are here, I don’t want to bring them down as well. Yes it’s very lonely but it makes a big difference to have your support and understanding! Sending love ❤️ ❤️❤️

 

[sapphire turner]

It’s blinking tough, I’ve just taken two anxiety tablets as I’m struggling to cope with the constancy if it. I know I should think I’m lucky as I’m not as bad as others. We’ve been out all day and other than having to be very conscious of where he is and what he is doing, everything was good. We have been home 3 1/4 hours and he hasn’t stopped, I’m just going up stairs, I’m just back, can I have a biscuit, can I go to the toilet, I’m back from the toilet, and on repeat every minute. Can I have a sandwich, yes and put it down 2 minutes later and he’s stood watching the dog eat it, second time in two days he’s given the dog his tea and even though I’ve just watched him he says he hasn’t. This is after 30 minutes between 2 am and 2.30 am of him saying he needs to go out, going outside in his pyjamas, looking for keys to the car, he has t driven in years. I’m shattered and just want to settle down for a while. I’ve been screaming and throwing newspapers around!

And as many say, family have no awareness or interest. His daughter is having him in Saturday and I can’t have the times until Wednesday so making it difficult for me to make any arrangements to do something in the 8 hours a year she has him - lives two minutes away.

Sorry to overtake your rant, it shows how many of us feel it’s hard. Hats off to people who can do it with good grace but I don’t think that’s me.

Ah Ellie we are all having a **** time to be sure. It’s the never ending stress and uncertainty, and if anyone else in the family says he is doing well, he seems okay to me, I will swing for them 😹😹😹
I just hope that I survive this, tho I sometimes think he will suck the life out of me and trample over my dead body. Hopefully not 🤞🤞🤞❤️❤️❤️xxx

 

[maggie6445]

Well... My positive today ...the wheelchair arrived today from the NHS . I can just about get it in to the car boot so looking forward to some outings to the parks for picnics now the weather is starting to warm up a bit.
I think the wheelchair delivery man must have thought ' crazy lady '. I was quite excited when it arrived 🤣🤣🤣

 

[sapphire turner]

Well... My positive today ...the wheelchair arrived today from the NHS . I can just about get it in to the car boot so looking forward to some outings to the parks for picnics now the weather is starting to warm up a bit.
I think the wheelchair delivery man must have thought ' crazy lady '. I was quite excited when it arrived 🤣🤣🤣

Hurrah! ❤️❤️❤️

 

[Ellie2018]

Ah Ellie we are all having a **** time to be sure. It’s the never ending stress and uncertainty, and if anyone else in the family says he is doing well, he seems okay to me, I will swing for them 😹😹😹
I just hope that I survive this, tho I sometimes think he will suck the life out of me and trample over my dead body. Hopefully not 🤞🤞🤞❤️❤️❤️xxx

I feel your pain. I have people saying to me ‘oh you see the carer not living long afterwards’ oh yes thanks for that, my plan is to have a life for what time I have left!

 

[Bevhar]

Hi Bevhar my three daughters and my sister are very supportive but sometimes I can’t bring myself to tell them how **** things are here, I don’t want to bring them down as well. Yes it’s very lonely but it makes a big difference to have your support and understanding! Sending love ❤️ ❤️❤️

That’s the same as me unfortunately I don’t have any siblings & like you I try to protect my 2 daughters as it’s upsetting for them being their Dad I’m going to start going to a carers group hoping that will help Thanks for your message This forum is a great help

 

[maggie6445]

That’s the same as me unfortunately I don’t have any siblings & like you I try to protect my 2 daughters as it’s upsetting for them being their Dad I’m going to start going to a carers group hoping that will help Thanks for your message This forum is a great help

@Bevhar , please do go to carers groups. .Coffee clubs , games and singing groups are my lifeline. Plenty of advice,shares experiences and laughs.
I'm sure you'll be made welcome

. I've made good friends with two couples and we go for lunch in a cafe every week after games group. Also go to to local amateurs musicals and shows together. I really don't think I could manage without the clubs. X

 

[Bevhar]

It’s blinking tough, I’ve just taken two anxiety tablets as I’m struggling to cope with the constancy if it. I know I should think I’m lucky as I’m not as bad as others. We’ve been out all day and other than having to be very conscious of where he is and what he is doing, everything was good. We have been home 3 1/4 hours and he hasn’t stopped, I’m just going up stairs, I’m just back, can I have a biscuit, can I go to the toilet, I’m back from the toilet, and on repeat every minute. Can I have a sandwich, yes and put it down 2 minutes later and he’s stood watching the dog eat it, second time in two days he’s given the dog his tea and even though I’ve just watched him he says he hasn’t. This is after 30 minutes between 2 am and 2.30 am of him saying he needs to go out, going outside in his pyjamas, looking for keys to the car, he has t driven in years. I’m shattered and just want to settle down for a while. I’ve been screaming and throwing newspapers around!

And as many say, family have no awareness or interest. His daughter is having him in Saturday and I can’t have the times until Wednesday so making it difficult for me to make any arrangements to do something in the 8 hours a year she has him - lives two minutes away.

Sorry to overtake your rant, it shows how many of us feel it’s hard. Hats off to people who can do it with good grace but I don’t think that’s me.

It really is so hard I don’t think their is enough support for carers I’m only just on this journey but I’m struggling big time I love my husband with all my heart & when he was recently in hospital I promised myself I wouldn’t lose my patience again but it’s so hard you would need to be a saint to not lose it at times I feel lost & defeated & feel there’s no way to go I’m feeling so sad as my husband has always been my rock & I know he deserves me to be his

 

[Bevhar]

@Bevhar , please do go to carers groups. .Coffee clubs , games and singing groups are my lifeline. Plenty of advice,shares experiences and laughs.
I'm sure you'll be made welcome

. I've made good friends with two couples and we go for lunch in a cafe every week after games group. Also go to to local amateurs musicals and shows together. I really don't think I could manage without the clubs. X

Thank you for your advice We are going to an art group tomorrow I think I’ve just got to stop feeling sorry for myself & take care of my husband as I know he would do for me It’s just all so new to me & frightening x

 

[maggie6445]

Thank you for your advice We are going to an art group tomorrow I think I’ve just got to stop feeling sorry for myself & take care of my husband as I know he would do for me It’s just all so new to me & frightening x

It's very hard in those first months after diagnosis. All hopes and dreams melt away and fear creeps in . It took several months to learn acceptance. I'd just retired when my OH was diagnosed so all plans vanished.
My mantra is accept the things I cannot change, courage to change the things I can and the wisdom to know the difference!

Hope you enjoy the group tomorrow. If not try another til you do. I really don't know how I'd manage sometimes without the support and friendship

 

[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

It’s so hard and at times it just gets too much my husband is the love of my life but at times I feel I can’t go on it really is so lonely

 

[leny connery]

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

hugs to you. I know. It is hard, even when like a mantra I'd say, just get me through today, just today.. But weekends, and for me the evenings are another kind of hard

 

[maggie6445]

It’s so hard and at times it just gets too much my husband is the love of my life but at times I feel I can’t go on it really is so lonely

It is lonely. My OH has only spoken to me twice since teatime, both times to ask if there's a toilet in this building!
Last week he sat on the bottom stair for six hours .He had his hat ,coat and shoes on the wrong feet. He only moved to talk and socialise with him self in the hall mirror when he told his reflection that I had ,locked the front door and was mean because I wouldn't take him to see his parents! His dad passed in 1985 and mum in 2002. I couldn't distract him , in the end I just left him there🙂
Acceptance, acceptance! 😘

 

[sapphire turner]

hugs to you. I know. It is hard, even when like a mantra I'd say, just get me through today, just today.. But weekends, and for me the evenings are another kind of hard

Yes it’s the times that used to be fun, relaxing together- now I am just wishing time away, until I can go to sleep or get out to somewhere anywhere. I need to start living for today but it is so hard! Sending love ❤️

 

[Ellie2018]

It really is so hard I don’t think their is enough support for carers I’m only just on this journey but I’m struggling big time I love my husband with all my heart & when he was recently in hospital I promised myself I wouldn’t lose my patience again but it’s so hard you would need to be a saint to not lose it at times I feel lost & defeated & feel there’s no way to go I’m feeling so sad as my husband has always been my rock & I know he deserves me to be his

Thank you for saying that, great words, I need to try to remember the number of years he was my rock and supported me. I’m having counselling soon, I want to be able to hear a voice saying its not him, it’s the disease so be patient.

 

[maisiecat]

Hi @Ellie2018 , I am having counselling and it has been the most brilliant help. I am sure most of us recognise the times when we are impatient and angry. I couldn't get over how angry I was without help. My husband is in a Nursing home now,our visits are happy and loving and we are able to plan things. I dont know if he will be allowed home but if he is I feel able to manage.

 

[John Barr 22]

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!

Hi read your letter re life ebbing away ,mine has gone
my husband has vascular ,alzimers dementia he is also alcoholic ,
words fail me ,,,yes help out there ,but my husband wants no,one just me
my sons work families of there own ,so. There time is limited ,,sorry I’m going on ,my marriage hasn’t been good ,,,,,yesterday nurse made comment
must be hard seeing dementia in some you love ,,Harider when you Don’t
Godbless x

 

[sapphire turner]

Hi read your letter re life ebbing away ,mine has gone
my husband has vascular ,alzimers dementia he is also alcoholic ,
words fail me ,,,yes help out there ,but my husband wants no,one just me
my sons work families of there own ,so. There time is limited ,,sorry I’m going on ,my marriage hasn’t been good ,,,,,yesterday nurse made comment
must be hard seeing dementia in some you love ,,Harider when you Don’t
Godbless x

Oh my John Barr sounds like **** thinking of you and sending love ❤️