Christmas a real trial, help to keep going

[safray]

still find it difficult to comment & find a file for me to use. I am so hopeless at modern technology but keep trying. Life now very very traumatic, my breathing bad this weather & my husband becoming less able to cope. So many things being broken in our home, Christmas a real trial but need to keep going. help

 

[nae sporran]

still find it difficult to comment & find a file for me to use. I am so hopeless at modern technology but keep trying. Life now very very traumatic, my breathing bad this weather & my husband becoming less able to cope. So many things being broken in our home, Christmas a real trial but need to keep going. help

Sorry you are struggling with ill health and your husband is less able to cope. Have you had a care needs assessment where you can ask for day care and daily carers coming in, both of which would take a lot of the strain.
The National Dementia Helpline 0300 222 1122 can provide information and support. on the telephone if you just want t talk to someone.
Christmas opening hours:
Monday 24 December (Christmas Eve) 9am – 5pm
Tuesday 25 December (Christmas Day) Closed
Wednesday 26 December (Boxing Day) Closed
Monday 31 December (New Year's Eve) 9am – 5pm
Tuesday 1 January (New Year's Day) Closed
The Helpline will be open as usual at all other times.

You managed to say hello despite having trouble adapting to the forum, safray. For what it is worth, https://forum.alzheimers.org.uk/thr...d-out-more-and-say-hello.113250/#post-1594972 may help guide you in posting.

 

[nellbelles]

still find it difficult to comment & find a file for me to use. I am so hopeless at modern technology but keep trying. Life now very very traumatic, my breathing bad this weather & my husband becoming less able to cope. So many things being broken in our home, Christmas a real trial but need to keep going. help

@safray I’m sorry that the weather is affecting your breathing I’m sure that makes caring even harder, @nae sporran has posted some good links I hope you can get some extra help soon.

 

[Shedrech]

hi @safray
sorry to read you are finding the season so challenging

I appreciate that you may not want to bother anyone, but if your breathing becomes too difficult please do call an ambulance and explain to the operator that you are not well and also your husband will need support, they will find ways to help you

AgeUK have a handyman service which may be able to help you with those broken things
https://www.ageuk.org.uk/services/in-your-area/handyperson-services/

keep posting ....

 

[nestle]

Hi Safray , I'm sorry to read of your struggle . Caring is hard enough when you are well .
I agree with Shedrech if your breathing is a lot worse call an ambulance . Or is there anyone else you can call? It's hard to ask for help but sometimes you just have to . Wish I could help more but am thinking of you and hoping you get through this time and turn a corner soon .

 

[Baggybreeks]

Well I would have liked to speak to someone about today, but the help line is closed.
I am on my own now.
Christmas in the care home with my husband for the second year. It doesn’t get better.
He is almost totally unresponsive. I worked very hard to get through and have come home exhausted.
No decorations, no point. Only me here.
And Merry Christmas in this situation rings very hollow when the one I love is disappearing. I grieve for him alive, and will no doubt have more grief.
I can’t wait for this festive season to finish.
My husband was crying today with carols playing on the tv so he is still in there suffering.

 

[Shedrech]

oh @Baggybreeks such a heart rending post
I think, sadly, there are quite a few of us who are not unhappy for this day to have passed
I spent the third Christmas day with dad, in his care home, I went in to help him eat his dinner, knowing the staff would be very busy, but I couldn't bear to eat with him as I have before - I played carols too, but don't know whether dad really knew what they were, though he still seems to like to have music playing
silly, but there was never any question that I wouldn't be with him, and no doubt that was the same for you
I hope you sleep tonight, to get some rest
best wishes

 

[kindred]

Well I would have liked to speak to someone about today, but the help line is closed.
I am on my own now.
Christmas in the care home with my husband for the second year. It doesn’t get better.
He is almost totally unresponsive. I worked very hard to get through and have come home exhausted.
No decorations, no point. Only me here.
And Merry Christmas in this situation rings very hollow when the one I love is disappearing. I grieve for him alive, and will no doubt have more grief.
I can’t wait for this festive season to finish.
My husband was crying today with carols playing on the tv so he is still in there suffering.

I understand, so many of us do sweetheart. I want this season over too. Everyone keeps telling me about their happy family day and I have to smile and keep desolation at bay as much as I can. All fellow feeling to you. with love, Kindred. xx

 

[Izzy]

@Baggybreeks I'm sorry things are so difficult for you. I know you said you'd like to talk to someone and that the Helpline is closed. If you'd still like to talk to someone The Samaritans have an emotional listening service. Perhaps it would be a good idea to phone them. The details are as follows -

Phone number - 116 123

https://www.samaritans.org/how-we-can-help-you/contact-us

 

[Grannie G]

For those struggling while the Helpline is closed, the Samaritans is not only about suicide, they provide a listening ear for everyone and are always open.

Samaritans

Phone: 116 123 (open 24 hours, seven days a week, all year round)

Email: jo@samaritans.org

Please phone

 

[maryjoan]

I understand, so many of us do sweetheart. I want this season over too. Everyone keeps telling me about their happy family day and I have to smile and keep desolation at bay as much as I can. All fellow feeling to you. with love, Kindred. xx

Same here, just said on another thread. Saw lovely photos of happy family Christmas days on facebook - members of my family far away. I saw no one but himself and the carer. 5 episodes of The Chase back to back, and an old Dad's Army. No conversation, bored out of my mind. At least Daughter and family are coming over today for a little while.........

 

[Baggybreeks]

Thanks for your replies, all we can do is hang on in there. Occasionally the branch breaks.
I hadn’t thought about Samaratans, thanks for the number.
I think the stress of the years of coping gets tough.
I will be back at the home today to help again at lunchtime till tonight.
It’s strange how I still feel that I prefer being there with him , at least I can do something with him.
I hope you all are coping today , another day to get through. Limbo life.

 

[Grahamstown]

We have negotiated Christmas, maybe not the Christmas that we usually enjoy but fairly contented few days with one event per day, family, friends and the rest of the day routine, which includes the usual amount of sundowning. The thing that really gets me down is the expectation of other people that we should have this sort of Christmas or that. Hope you have done this, people say, or hope you have been able to enjoy that. I can’t expect them to understand what life is really like 24/7, so I fudge the issue and we have had a relatively happy time, largely because I have downgraded my expectations and have to get my fulfilment from myself. He is starting to get on my nerves with laughing at everything, tragic or happy. After an amicable few days, I snapped at him last night because of the sundowning when I was trying to concentrate on a drama on TV. Usually we watch stuff that he can dip in and out of with no need to concentrate so if I try to watch something more serious then I get distracted all the time by his behaviour. He wants to do this or that but has no conception of how to organise or carry it out, and when we do go to the family he always wants to go home soon after we have got there. So for my sanity I have to be very organised and clear about what we are going to do.

 

[safray]

Well I would have liked to speak to someone about today, but the help line is closed.
I am on my own now.
Christmas in the care home with my husband for the second year. It doesn’t get better.
He is almost totally unresponsive. I worked very hard to get through and have come home exhausted.
No decorations, no point. Only me here.
And Merry Christmas in this situation rings very hollow when the one I love is disappearing. I grieve for him alive, and will no doubt have more grief.
I can’t wait for this festive season to finish.
My husband was crying today with carols playing on the tv so he is still in there suffering.

How your comments are my feelings but luckily my husband is still with me at home and has long term memory much of the time. Recently I really wonder if I can keep going with the situation, sadness at Christmas is doubled as my son died in 2012 aged 50 again very hard to bear.

 

[safray]

We have negotiated Christmas, maybe not the Christmas that we usually enjoy but fairly contented few days with one event per day, family, friends and the rest of the day routine, which includes the usual amount of sundowning. The thing that really gets me down is the expectation of other people that we should have this sort of Christmas or that. Hope you have done this, people say, or hope you have been able to enjoy that. I can’t expect them to understand what life is really like 24/7, so I fudge the issue and we have had a relatively happy time, largely because I have downgraded my expectations and have to get my fulfilment from myself. He is starting to get on my nerves with laughing at everything, tragic or happy. After an amicable few days, I snapped at him last night because of the sundowning when I was trying to concentrate on a drama on TV. Usually we watch stuff that he can dip in and out of with no need to concentrate so if I try to watch something more serious then I get distracted all the time by his behaviour. He wants to do this or that but has no conception of how to organise or carry it out, and when we do go to the family he always wants to go home soon after we have got there. So for my sanity I have to be very organised and clear about what we are going to do.

I wonder about my sanity, yesterday emailed some of family saying I was fed up with being told "I should do this - why don't you do that etc" I am becoming withdrawn & hesitant to approach anyone for help. I have always put on a brave face in public, no one knows how life is in our situation, but perhaps it is time to shout!

 

[witts1973]

I hold on to the fact that we had a couple of heat waves in April over the last decade so I'm hoping it's not too long until we get some blue skies,I'm glad xmas is out of the way,I was fed up of the carers asking where the xmas tree was as I haven't bothered putting it up the last 2 years after lack of space as we have 2 beds in our lounge,I even got it down from the loft after carers mentioning it but it stood in front of the lounge window and blocked out the light and so made the lounge depressing and so was swiftly removed and stored in the garage,I will also not miss being accosted by groups of carol singers outside Sainsburys staring at me and swinging their collection buckets.

 

[Cat27]

I wonder about my sanity, yesterday emailed some of family saying I was fed up with being told "I should do this - why don't you do that etc" I am becoming withdrawn & hesitant to approach anyone for help. I have always put on a brave face in public, no one knows how life is in our situation, but perhaps it is time to shout!

Please keep talking to us. There are so many people here who understand how you feel.

 

[Grahamstown]

I wonder about my sanity, yesterday emailed some of family saying I was fed up with being told "I should do this - why don't you do that etc" I am becoming withdrawn & hesitant to approach anyone for help. I have always put on a brave face in public, no one knows how life is in our situation, but perhaps it is time to shout!

Dear @safray I have felt the same but realise I need a break from the relentless life and have started to look for some help at home. I had a WhatsApp from my sister in law today, not yesterday, saying she hoped we had done this and that. It really rubbed me up the wrong way and I cannot reply at the moment. It is her brother and I did think she could have called him with a bit of planning, even though they are in Australia with her daughter for Christmas. A close friend has said that he hopes my husband can “settle down and enjoy simple things like nature”. If only I thought.

 

[safray]

I am more convinced however loving my family is none understand the reality of the situation. I endeavour to explain the ongoing, non stop care, absolutely relentless, they believe I am complaining, the patience need needed with my husband's character I was hoping to show the difference between his being with family he knows & lives his past life with (although they do not understand this) and daily life here at home when he is confused and cannot understand the present. I love them all but I have been lonely over the Christmas, New Year due to a terrible misunderstanding. No one really waits to hear my true thoughts, they are analysing the situation from I presume other sources of information except reality from carers. What can I do to repair a cold communication between all.

 

[safray]

I am more convinced however loving my family is none understand the reality of the situation. I endeavour to explain the ongoing, non stop care, absolutely relentless, they believe I am complaining, the patience need needed with my husband's character I was hoping to show the difference between his being with family he knows & lives his past life with (although they do not understand this) and daily life here at home when he is confused and cannot understand the present. I love them all but I have been lonely over the Christmas, New Year due to a terrible misunderstanding. No one really waits to hear my true thoughts, they are analysing the situation from I presume other sources of information except reality from carers. What can I do to repair a cold communication between all.