Who do you talk to in 'real life'?

[Anongirl]

I felt so exhausted today. Drained. Mum didn't ring me at work though which I'm glad about, though I did jump every time I heard a phone ring! She seemed more relaxed today. Her thoughts seemed clearer.

I appreciate all your replies and I have taken it all on board.

I want to enjoy 'me time' but then feel guilty that I should be spending time with mum instead. While I can.

I have a very understanding supervisor so I'm lucky in that respect.

I asked about counselling but decided against it. Perhaps one day I will take it up.

My brother is the only other person who knows mum as well as I do. I do offload to him and he understands. He isn't as emotional as I am though and seems more able to take a step back. This is because I've always just got on with the organising. That's a hard habit to break now, I haven't perfected the art of delegation. Partly because there aren't people to delegate to. If I do it I know it's done!

I guess I don't offload to people because I don't want to be the person who is constantly negative and talking about my problems. I feel I'm betraying mum a little too.

I'm glad I have you all. I can get it all out and you probably save my husband listening to a lot of ranting! X

P.S Scarlett123 and 2jays, I've had similar experiences when mum's boiler broke. The engineer gave me a ridiculous story about having come round but got no answer so put a card through. Then tried to blame her memory loss on it and said she must have gone out!!! Not true, she stood freezing at the window waiting for him and she's more than capable of spotting a card on her doormat! I was furious!

 

[CollegeGirl]

I'm not surprised you were furious, I would be too. Your poor mum. Horrible man x

 

[Anongirl]

Hi CG. I always read on here about being honest about dementia and that people are understanding on the whole. Well on this occasion this didn't ring true!

However it's nearly time for her kitchen to be fitted (gulp). I'm
starting the clear out this weekend. The foreman working on it has met with us and I have explained about things. He was lovely and said he will make sure she's safe and ok. He's given me his mobile number for any concerns. Good start. I'll be on a lot during that time!! x

 

[DizzyBabe]

Anyone Who Will Listen

I am my father's sole carer and disabled to boot. It makes life very isolating to say the least. And with being the youngest of an older father - none of my peer group is dealing with this yet.

And until the doctors finally make the statement that he has medical necessity to be in a home or have home assistance, I"m on my own.

I have a few people I speak to - a few friends, my sister and an aunt. But they all just give that sad face that borders on pity, so I don't talk to anyone much.

Support groups are impossible for me, so I try to seek out help online, but so often, it's just commiseration, rather than real help or advice and so I drop out.

I feel this is the most isolating of caring.

 

[Dazmum]

Hope all goes well AG, what a horrible man to blame your poor mum for his inefficiency that's just mean and I hope he feels very guilty. I'm sorry you're so worn out, it's a feeling that we can all identify with. I used to arrive in the driveway sometimes from work and not want to go indoors (mum and dad lived with us).

I always talked to my husband, well he was right there so could see for himself, but it all got so overwhelming as both mum and dad deteriorated, it was all that I could think/worry about. A few people at work knew what was happening and were understanding, my boss's MIL was more advanced than mum so was really accommodating when needed. I think I was in danger of becoming incredibly boring as when friends came to see us, my husband used to say that he would squeeze my hand if we needed to change the subject which was good, because friends were of course concerned but didn't need details! So, finding TP was a blessing for everyone who knows me as well as me, because they were spared much of the anguish, but here you can rant, be sad or have a laugh and just everyone truly understands and you don't feel so alone. Hugs for you xxxxx

Sorry Dizzybabe, we cross posted! Welcome to TP and I hope that you will get some real help and advice here, and you won't feel so isolated. Please keep posting x

 

[Anongirl]

Hi Dizzybee. It definitely sounds like you need more support. Easier said than done I know.

I know that pity look well. Another reason I choose carefully who I discuss things with. Mum hates it when people look at her that way too.

Last thing you need is pity. Constructive support is what you need. I hope you manage to get it.

In the meantime you have us X

 

[Anongirl]

Thanks Dazmum. This morning I dropped the children off and drove to work. I then sat in the car for 15 minutes. Alone with my thoughts. I think sometimes we just need to stop and take a breath.

If anyone asks how mum is, out of politeness, I have to stop myself before I say too much, once I start I can't stop! I'm an open book and often open up too much on occasion! X

 

[Forever]

Reality

I don't find anyone interested in listening to me. I get the impression that people think I have a low tolerate to problems and can't handle life. But in reality, I have a high tolerance to emotional pain, isolation, desperation and the daily struggle of Nursing homes and social workers telling me how to handle my Dad, who swears and spits. He is vulgar to others at times and I think all his carers hate him. 3 care homes have rejected him. But I remember the man before dementia. I remember the days when I could ask him a question, go on holiday together and generally enjoy life. I am no longer working and earning. I inherit nothing, so what I do is for love, but I do it alone and feel absolutely alone and sad.

So to all of you lovely carers, I give you my respect and love.

 

[CeliaW]

Who do you talk to? Hmm difficult one because I find that I am saying about the same old problems over and over again and it bores me so gawd knows what it does to the few friends I share it with!

But what I find hardest is although they try to be sympathetic and understanding - they just don't get it - they don't get how relentless it all is, how when you have explained something for the nth time and hung the phone up and two minutes later it rings again with the same question... and I might say to one particular friend who really tries her damnedest to understand - which I truly appreciate... "Arggh.. Mum phoned 27 times last night in under three hours" and she says..."ah bless..." and that does my head in!

Thing is there are two types of people you can't share with - those who think that dementia is just forgetting things or those that think they can say "ah well if you did x that would be so much easier" Doesn't matter what the x is but you can bet your bottom dollar that if it involves bureaucracy its a darn sight harder than they can dream of and its probably something you have been trying to get sorted for months but then they allocate the "case" (since when was my Mum a case? she is my Mum!) to someone else and you go through it again and again..

So hoo bloody ray for TP - I often write posts and delete them - some I post and I feel a lot better after both.

And sometimes I think we don't say enough to some family and friends because we want to be seen to be coping and to know what to do.....

 

[SallyPotter]

Totally agree Celia, I write posts on here, then delete them.............. in a sense its still getting them out. At the mo contemplating letters to MP's + stuff ( re funding) maybe its the fight that keeping me going? Besides that the few friends that don't 'vague' out when I speak to them, my cats, my own reflection in the mirror and my parents before this sentence was passed on them!

 

[LadyA]

One of the most frustrating aspects of Wm's dementia in the earlier stages, for me, was his ability to hide it from people, and his lies to people - especially professionals - to cover things up. He was such an expert, that even Doctors didn't cop that he hadn't a clue what they had asked him until I pointed out to them that if they listen closely to his answers, he wasn't actually answering what they had asked - he had made a fine art of giving neutral answers to questions and then verbally distracting them, so the person wouldn't realise that he either hadn't heard or hadn't understood - or both - what they had said. People - his friends & family mostly - even said to me that they couldn't understand why I would say such things about him (as that I thought he had symptoms of early stages of dementia), or what my motives were!

Thankfully, I have one friend who had been through similar with her mother. No-one else was ever shown the face of her mum that she was! And I could talk to her about the way Wm was, and the way he could deceive people. She said that the day before her mum died (at 99!), she was still trying to deceive the doctors! All the sort of symptoms that I almost couldn't quite put my finger on - I could talk to her about, and very often she would say "yes, mum was the very same!" I think I would have gone nuts without her!

 

[Gemz67]

I haven't really spoken to anyone about my worries, anxiety, guilt, dread, or many other feelings. I talk to my eldest daughter, I have a dry/sarcastic/black sense of humour, mainly developed over the years as a coping/deflection mechanism for other things I've been through in my life, and my eldest 'gets' this about me and doesn't judge when I say something others may balk at, or roll my eyes when I'm answering the 15th call in an hour from mum telling me she has no milk, when I have filled the fridge with it that morning. She is only in her 20s though, and has had, luckily, very little trauma in her life, so I don't think she would cope well if I burdened her with the full range of my venting/worrying. Other than her, I'm afraid that now I've found TP, I'll be doing most of my offloading to you lovely people who I've already found to be a great source of information and inspiration.

Gem x

 

[Carer638]

You guys are amazing....

AG. This is my first post on here and I see where you're coming from. I'm lucky. My wife is in the early stages of Alzheimer's - memory of a goldfish, Corrie is real and Elvis is King! And I say - what of it? - she's happy. And that I see as my job - keeping her that way for as long as I can.

But yes its so tiring physically as well as mentally. Again, I am so lucky. Work are great, I can WFH. Family comes first my boss says. I have my hobby and friends there who 'A' gets on really well with - they understand too. Colleagues and friends may not understand - but usually have kind words. But I try not to burden them.

But I think you need to find time for yourself or there's a danger of you going under too - and that won't do will it? My biggest problem is finding a 'Dementia Free Zone' where I can chat about stuff that I like. I'm having some success there with a couple of on-line friends who I meet from time to time for a drink, lunch etc. But I have to be careful that they know its only friendship - my comittment is to 'A' - end of.

Here for you along with the rest of us if you need me.

Chin up luvvie!

 

[Anongirl]

Hi Carer638 and welcome! I'm sure you will find TP a helpful and supportive network. There have been times I don't think I would have coped without it. You are right about needing a non-dementia outlet. I think mine is work, which is probably why I'm careful not to go on about my worries too much there. And my children who are so young and carefree I just want to protect them from all the pain of this.

I suppose one thing this situation has done is brought me and my brother closer. I guess the one person who I can share this all with is him, because its his mum too. No one else understands it quite the same. I do think he finds it hard though.

 

[CeliaW]

Anongirl - be thankful it has brought you and your brother closer. It can so easily go the other way. My sister has always had difficult relationships with the rest of the family for many reasons. I am now accused of making excuses for Mum as she doesn't appear to acknowledge Mum has dementia even though we have been together to the consultants appointment with Mum when he said she had vascular dementia.

My brother has been diagnosed as bi-polar and, because I am close to him having known some of the problems he has had, she has telephoned him to say he should pull himself together and I have been accused of giving his problems some fancy name because of my nursing background! If only she knew of all the problems with the police and CPN when he has been in a manic phase... they don't tell her as they know the likely reaction.

How do I feel about her? Don't know really, I would never see harm come to her but she has been so nasty to me and others that I have to say that I love her as my sister but there are many times when I really don't like her.....

I cared for the sister closest to me in age when she was terminally ill and she and I were of a like mind in many things and she was not just my sister but my friend too.

So... (after a long winded spiel - sorry) if the illness has brought you and your brother closer - be thankful and rejoice that it is so because it is so hard when dementia drives families apart.

 

[Anongirl]

Hi CeliaW. I know. I read posts sometimes about siblings and I don't know what I would do if my brother turned on me. Going through this is hard enough without adding battles with siblings into it.

We don't always agree on everything. Fingers crossed we stay strong and work together. I have a feeling we are going to be tested to the limit. I just hope we have what it takes.

X

 

[Winnie10]

It's good to talk

Anon girl.

Sorry you had an awful "dementia day". We all get them don't we. But sometimes its good to cry rather than trying to hold the emotion in. I know from experience trying to hold the emotion inside and then trying to get on with work, made me feel more
stressful.

But the blurt out you had was good, it told your colleague (and others ) just how draining your working day is sometimes. Your head is wizzing round with home and you still have to do your job.

Your colleague didn't know what to say? Yes because unless we (carers) tell our colleagues what "a bad dementia day" is like they won't know, what we are coping with.

So I am proud of you girl. You got it off your chest and said it how it really is.

Who do you talk to in Real Life? HR / Line Manager, so they are aware you are working to the best of your ability but some days you will be over tried.

Secondly you talk to all your friends here on the forum. Thats what friends are for.

 

[Anongirl]

Thank you Winnie10 xxx

 

[Tensing]

Sending empathy. Make sure your colleagues know your situation is my advice.

 

[Ciboulette]

I feel for you, but sometimes that blank stare of response is a form of shocked digestion and good can come of it.

I offload on my (grown-up) daughters and then feel bad as they have their own upsets over the changes in their father. But I also occasionally write an email - a good moan, it must sound like - to a friend who is not a close friend, and because I'm not overly concerned about her reaction I do find it therapeutic. Good luck