Where have all the signposts gone.

[Windy28]

I read Bettysue's post regarding the bedtime poo drama and I just want to say please keep track of how many pairs of pyjamas your OH has because if one pair goes missing it will be hidden in the back of the wardrobe or a drawer still soiled.

I too have reached the end of my chain. I am too tired, sad, lonely and weary. Lockdown has taken its toll on both of us. I don't recognise either one of us anymore.

We row all day, everyday, over such little things, he then gets confused and very angry at the situation and I cry and get scared. It's a circle of despair. I see that I am at fault and that I am not coping with his condition and his behaviour.

it is becoming too much to bear.

 

[jennifer1967]

i dont think it is your fault @Windy28 . i think that its a set of circumstances that have all come together at once. do you have help? maybe need a carer assessment and care assessment updated. may also need respite just to have a break from the daily grind and break the cycle. the situation is not good for either of you and more importantly, its not your fault

 

[Windy28]

i dont think it is your fault @Windy28 . i think that its a set of circumstances that have all come together at once. do you have help? maybe need a carer assessment and care assessment updated. may also need respite just to have a break from the daily grind and break the cycle. the situation is not good for either of you and more importantly, its not your fault

Thank you for your reply.

 

[Shedrech]

hi @Windy28
I'm sorry things are so bad for you both

maybe call Admiral Nurses for a chat, as they are there to support carers

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer's Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org

and there's our Support Line

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

please try walking away when you feel you are about to argue ... I used to have to 'nip to the loo' several times in a day some days, it was an excuse dad accepted as me needing to leave him ... the 'time out' gave me a chance to calm down, and often dad settled too ... I wouldn't go back straight away either, I'd find something to appear to be doing elsewhere and only go back with a coffee and chocolate biscuit as a treat and distraction, putting his favourite music/TVprogramme on/ looking at the birds in the garden

have you seen this thread, it helped me begin to grasp how things were for dad and how I might try responding to him .... though nothing works all the time, of course

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

it does sound as though some respite or day care may give you both a break ... contact your Local Authority Adult Services to arrange a care needs assessment for your OH and a carer's assessment for yourself ... a care package can include home care visits and referral to day care

maybe also have a chat with your GP about how the situation is affecting you, then it's clearly flagged up that you are, understandably, finding life tough

keep posting too, to get things off your chest

 

[Windy28]

hi @Windy28
I'm sorry things are so bad for you both

maybe call Admiral Nurses for a chat, as they are there to support carers

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer's Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org

and there's our Support Line

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

please try walking away when you feel you are about to argue ... I used to have to 'nip to the loo' several times in a day some days, it was an excuse dad accepted as me needing to leave him ... the 'time out' gave me a chance to calm down, and often dad settled too ... I wouldn't go back straight away either, I'd find something to appear to be doing elsewhere and only go back with a coffee and chocolate biscuit as a treat and distraction, putting his favourite music/TVprogramme on/ looking at the birds in the garden

have you seen this thread, it helped me begin to grasp how things were for dad and how I might try responding to him .... though nothing works all the time, of course

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

it does sound as though some respite or day care may give you both a break ... contact your Local Authority Adult Services to arrange a care needs assessment for your OH and a carer's assessment for yourself ... a care package can include home care visits and referral to day care

maybe also have a chat with your GP about how the situation is affecting you, then it's clearly flagged up that you are, understandably, finding life tough

keep posting too, to get things off your chest

 

[Windy28]

Thank you for all this. I have looked at the other links you sent me. I realise I have to go back to the doctor. I haven't been for nearly a year. Although I have had a couple of telephone appointments. They haven't seen my OH for over 6 months either (because of the pandemic).
I will do it, but it will be next week now. I do read everyone's posts and gain a lot from them, comfort and information. Some days are just harder than others.

 

[Shedrech]

aren't they just @Windy28
come here and post anytime for sympathy and support
I'm glad sharing members' experiences is of comfort to you
and hope your GP takes the time to listen to you next week

 

[JaxG]

I have just joined this forum and so relieved to find I am not alone @Windy28 and I understand your exhaustion and despair. My husband was diagnosed with Alzheimer's/dementia last year after a battle to be taken seriously by the doctor. I do everything for him but it is never enough, he loses it for no reason and will shout and berate me for hours on end. It is so tough and destroys your life.

 

[jennifer1967]

I have just joined this forum and so relieved to find I am not alone @Windy28 and I understand your exhaustion and despair. My husband was diagnosed with Alzheimer's/dementia last year after a battle to be taken seriously by the doctor. I do everything for him but it is never enough, he loses it for no reason and will shout and berate me for hours on end. It is so tough and destroys your life.

hello @JaxG do you have any help? shouldnt put up with him shouting at you. do you walk away into another room? im learning not to put up with it but my husband has vascular dementia. you could talk to his GP about medication to calm the shouting down

 

[Windy28]

I have just joined this forum and so relieved to find I am not alone @Windy28 and I understand your exhaustion and despair. My husband was diagnosed with Alzheimer's/dementia last year after a battle to be taken seriously by the doctor. I do everything for him but it is never enough, he loses it for no reason and will shout and berate me for hours on end. It is so tough and destroys your life.

JaxG

Welcome to this site. You have found a place full of support and information. Some stories will make you cry and some will lift your spirits on a bad day. Ask a question and someone will find the answer. Look through the 'chats' and there will be current links and information to help you steer your way through this maze.

You will find some journeys are longer than ours, so we have to learn from their experiences. That will inevitably make it a bit easier for us. We in turn will help those following us.

MY OH has Alzheimer's too and the battle to get to where we are today was truly epic. I fought doctors and family and people on the end of the phone to get an appointment for him to see someone as his personality was changing. It took a year and took its toll. Continues to take its toll.

Please post often. It will help.

 

[JaxG]

hello @JaxG do you have any help? shouldnt put up with him shouting at you. do you walk away into another room? im learning not to put up with it but my husband has vascular dementia. you could talk to his GP about medication to calm the shouting down

Hi @jennifer1967 , I do walk away but he follows me and can go on for hours. We have just moved and are being referred to our local memory clinic so I will discuss medication then. How long has your husband been suffering from it and does he get angry? It's not much of a life is it?

 

[JaxG]

JaxG

Welcome to this site. You have found a place full of support and information. Some stories will make you cry and some will lift your spirits on a bad day. Ask a question and someone will find the answer. Look through the 'chats' and there will be current links and information to help you steer your way through this maze.

You will find some journeys are longer than ours, so we have to learn from their experiences. That will inevitably make it a bit easier for us. We in turn will help those following us.

MY OH has Alzheimer's too and the battle to get to where we are today was truly epic. I fought doctors and family and people on the end of the phone to get an appointment for him to see someone as his personality was changing. It took a year and took its toll. Continues to take its toll.

Please post often. It will help.

Thank you, it does help to know you are not alone.

 

[jennifer1967]

Hi @jennifer1967 , I do walk away but he follows me and can go on for hours. We have just moved and are being referred to our local memory clinic so I will discuss medication then. How long has your husband been suffering from it and does he get angry? It's not much of a life is it?

he has had it 2 1/2 yrs now. he is very unpredictable and only a word out of place and he erupts. he says he cant control it and has to keep going until hes done. he has always been quick tempered but dementia has made it worse. because it is vascular, theres no tablet to treat or slow it down like alzheimers so have to treat the symptoms and manage them. if he starts, i say if you dont stop, im going to my room. we have separate rooms and mine has a lock on it. i always have my mobile charged and to hand. life is not great but with this forum, i have found so much support and knowledge that its made it easier

 

[JaxG]

he has had it 2 1/2 yrs now. he is very unpredictable and only a word out of place and he erupts. he says he cant control it and has to keep going until hes done. he has always been quick tempered but dementia has made it worse. because it is vascular, theres no tablet to treat or slow it down like alzheimers so have to treat the symptoms and manage them. if he starts, i say if you dont stop, im going to my room. we have separate rooms and mine has a lock on it. i always have my mobile charged and to hand. life is not great but with this forum, i have found so much support and knowledge that its made it easier

That sounds just like my husband, very unpredictable and I can never know what will set him off. He too was quite moody and difficult but the illness has made it much much worse. He has mixed Alzheimer'/vascular dementia and to be honest his behaviour is so bad I would not want to slow things down. Yep it doesn't just take their lives, and others only see the 'nice' person so hard to explain. I will sort a lock for my door, we too have separate rooms, he is a stranger now. The forum helps hugely, to know we are not alone.