Who do you talk to in 'real life'?

[Anongirl]

I find it hard to talk about what is happening to mum. I either want to cry or feel angry or feel like I'm whinging so I stick my brave face on and carry on. Except I don't carry on. It all goes round and round my head, almost constantly. I struggle to concentrate.

Today was what I call a 'dementia day' for mum. Nothing makes sense to her, everything causes anxiety and frustration. Awful. Lots of random phone calls to me at work. Glances from work colleagues. I just wanted to cry. I managed not to but did blurt out to a colleague about how awful things are on a bad day and how emotionally drained I feel (I know others heard too). She didn't know what to say. I understand that. I just needed to offload.

I usually come here to air my feelings because I know you all understand. I don't know if I felt better or worse afterwards! Some things sound odd if you've never experienced it.

 

[rajahh]

You may find it has helped. Even though your colleagues may not actually say anything, they will know. and perhaps one of them will approach you with kind words.

I talk about how frustrating it is for me with Gordon to my neighbours in our retirement complex. Obviously not everyo0ne, but there are one or two who I can offload to and it does help

Jeannette

 

[SallyPotter]

real life?

Friends really, everybody needs to 'sound off' every once in a while and most people I find are really supportive. Thing is though its really relentless + things seem to be 'getting better' until another crisis comes up. Its all easier for me now they're in a home, at least I know they're eating ok and not likely to gas themselves or try and drive. If things get to much I just take 5, its helpful being able to be open about it too. Its never going to be easy, just do the best you can and realise that there is only so much you can do, take time to be yourself (if necessary allow yourself time in a week) to indulge (and enjoy hobbies)
One thing I'm finding really helpful is a technique called 'mindfullness' it just trains you to think of the space you are in + the here and now, also accepting the inevitable (which is the most difficult thing)
Take care though, if things get to much speak to a doctor and come and chat on here whenever you can.
Love and hugs, I can appreciate what you're going through x

 

[creativesarah]

I hope you find a kind soul at work who will look out for you and draw along side you

Sorry you've had such a bad day

Sarah

 

[steviep]

I understand totally. I care for mum 24/7 as she lives with me. I think it's best to offload to others as I find it helps release the pressure, and when you do talk to people it's surprising how many have actually gone through or are coping with a very familiar situation and they can help you understand the problems associated with dementia sufferers and their carers.

I know it sounds silly but I find it comforting in a way to realise that others are experiencing the same things and that I'm not on my own. Mum is going through a particularly bad time at the moment and I've had a fair share of sleepless nights, confusion and rantings and ravings. It's getting to the point where, like you, I'm also finding it difficult to cope at times. Thank God for a 14 day course of sleeping pills for her or I think I really would have gone of the rails. What I'll do when they're finished I don't know, hopefully the doctor will let me have some more.

 

[Scarlett123]

That's the great thing about TP - everyone understands. I lost it today with the central heating engineers, who cancelled our annual service, at the last minute, for the second time in a week. My husband can't cope with any sort of change in routine, and would be so agitated, if he was present, and you're given a time window of 8 am to 6 pm, so I made very complicated arrangements, for a neighbour to collect him and take him to their house, until a friend had completed the school run, and could then take him to his club, and all the same in reverse - for nothing.

I phoned customer service, and when I complained of their service, or lack of it, and explained my situation, the reaction was "oh, right, yeah, well, yeah, I know, I know". That was it, and so I informed him tartly that unless he was a carer for someone with Alzheimers, he hadn't a clue. And that while he was at it, it wouldn't harm for him to revise his script, and insert the phrase "I'm sorry", now and then!

He muttered something about his Line Manager, and then the phone went dead, but 5 minutes later I was contacted, with profuse apologies, and told that they would now come on Thursday. And then when I rang off, I sat and cried.

Because now it means that I have to make more arrangements, and I'm dreading it. And when John came in, we started on the merry-go-round of him asking me nonsensical questions, like "what time is the lamb flying", over and over again.

I know it's frustrating for him, but it's no picnic for me, either. So Anongirl, I'm sorry I have no answers for you, but, like all the other carers on here, I do understand.

Having read this through it sounds like a Mega rant, for which I apologise.

 

[sunray]

Find a dementia support group if there is one locally. I still see some of the "girls" from mine, they have been my link to sanity we were there for each other in the tough times and are now all widows. Failing that find a telephone service with a counsellor on the other end of it and use that when you have a head of steam up.

I used to be on a counselling line called Lifeline in the 80's and every Wednesday afternoon for a while I had a caller I called "It's Bill" because that was his opening remark. Bill cared for his three girls because his wife had a mental illness and violent mood swings. The careworker came to take her out for the afternoon and he rang us to debrief before going out shopping. He said that way he could smile at others and feel normal.

So my idea would be to find somewhere to debrief and lighten the load.

Sue.

 

[Butter]

It is all about balance, I think. As mindfulness is. To talk. But not to talk too much. To not over-burden anyone ... but to communicate with everyone .... to say where you are ... but keep people company where they are ...

Of course it doesn't go smoothly .... I have talked too much .... can't talk at all .... good old human jumble ..

 

[CollegeGirl]

Oh AG, I'm sorry you feel so rough; I totally understand.

I talk to my husband. He's the only one I can say absolutely anything to and he understands. He also doesn't mind that we go round and round in circles regurgitating the same old subjects.

I don't know what I'd do without him.

With love and hugs to my virtual sis xx

 

[garnuft]

Peter and my oldest son, they're the only ones who know how my mind works.
(my 2nd husband would qualify too)

Maybe they're too afraid to move when I'm yattering.

No, they help me to see the beginning, middle and end of things, they listen and they interrupt, make me think and question myself,
sometimes we do it all again and it feels different even if the decision is the same.
I need their robust truth.

I think I couldn't think without them.X

 

[2jays]

My recent experience

Boiler service / not working

I ring

I say the boiler needs a service /not working

They say... Someone will be with you next week..... Between 8am and 6pm

Oh I say [big sigh]

No I can't do that... My mum, she has dementia umm ok I... No ummm
Can they not come tomorrow. Mums at day care that day... Oh I don't know what to do.... Ummm mum gets so cold.... And she is so unreasonable when she gets cold.... Ummmmm when did you say you can come?..... Was it next week?

They say... Can you hold the line, I just need to speak to someone ...

Ok yes, ummm I say... Put that down mum no don't do that...

They say, I won't be long....

[pretty music]

Hello 2jays... An engineer can be with you tomorrow. Is between 3pm and 6pm ok for you?

Sorted...

If you let anyone walk all over you... They will....and so will I

 

[60's child]

Mainly I talk to my husband. He is a very good listener. I have friends but now we have moved to be next door to Mum I dont see them very much as they are not local to me anymore. Gone are the days when I could have a natter over a cup of coffee
None of my friends have any experience with dementia so it does help to read the posts on here and realise I am not alone. Ironically the hardest person to talk to about Mum is my sister. She comes up for the day once or twice a month and when she is here Mum is so different it is hard to see that she has dementia. My sister does feel guilty that she cannot offer more help and does not feel comfortable if I say how things really are most of the time so I tend not to tell her unless it is something she needs to know.
Dee x

 

[Anongirl]

Thank you all so much for all your replies. I'm overwhelmed! I have to go to work so haven't got time to reply to you all but I will come back later.

I feel quite alone with it all at times (even if I'm not alone). My brain feels like it will explode if I have to explain the difference over the phone between reading and distance glasses while she gets all upset and frustrated. Sounds insignificant but to her it's earth shattering.

Anyway here is to a better day xxxx

 

[CollegeGirl]

Hope today is better, AG, I will be thinking of you xx

 

[1954]

Very good 2jays! I will no what to do with these sort of things now!

 

[Izzy]

To be honest I only talk about my worries or concerns on TP. I do have a brilliant brother and a good friend I could talk to but other than day to day stuff I find that hard. On TP I can get emotional and nobody sees me!

Having said that now I've a group of TPers in person I would feel comfortable talking to them - shared experiences mean a deep understanding b

 

[Carabosse]

I don't really have anyone I can talk to about mum, her friend knows how she is but she doesn't 'really' know how she is (if you know what I mean), same with other people mum knows, oh I can talk to mums CPN or My Dr but its not the same as having someone who would sit and listen to you for hours (not that I would go on that long). If I talk to the SW we all know what they would do 'your mum needs to be in a home', so guess what, I don't talk to them unless I really have to. I have you guys at TP but even then I don't tell you everything incase the SW reads the posts.

 

[zeeeb]

I talk to my partner, and my mother inlaw. They are both good at different types of conversations. But recently I've started to see a psychologist. And, for all the money it costs, she certainly gives a whole other angle on the issue. She gives me permission to not feel guilty, she gives me permission to be sad and angry and frustrated. She gives me permission to step back from certain areas and relinquish my responsibility. It's funny that when you pay for the advice, it seems so much more legitimate. The reason I started with the psychologist was because I know things are going to get so much worse over the years to come, that it's a marathon not a sprint. I have so much more to cope with as time goes by.

It's nice to know that I don't have to take it all on myeslf. That my mum has the ability to make decisions still, and it's the decisions she's making now, that matter, and that I can't be responsible for those decisions, because she is still capable of making them. I can't be blamed that the wrong decisions were made after the fact. Which troubles me greatly. I (think I) know what she really wants, and some of her decisions are contrary to what (I think) she really wants, so I can't be responsible when it comes back later on down the track. That might sound a bit mysterious, but I have been feeling so much guilt for knowing I won't be able to fix things to the way she would want them fixed later on down the track.

But she hasn't given me power of attorney, she's given it to dad, and I can't be feeling guilty about dads poor decision making skills when I don't have the power to make the decisions.

 

[at wits end]

I talk to you guys, my husband and my teenage kids (who have far more insight that the rest of the family put together). I have a few friends with a slight understanding of the situation who will let me moan, but have no suggestions.

It's very isolating being a carer.

 

[snedds57]

Hi all,

I run a dementia cafe and carers group and find that the carers get strength and support from each other. These are day time meetings though which might not be any good for you if you are working but there may be a carer's organisation in your area who meet in the evening. Link to the Princess Carer's trust is here for local support. http://www.carers.org/

Also if you can make contact with your local Alzheimer's Society office, they may have support available to you too.

I think Anongirl it might be good to talk to your employers and tell them of your situation so that they can understand the stress you are going through. They might surprise you in the support they might give you.

I take my hat off to all you carers for doing a very, very, difficult job.

Linda