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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
Poor you, you were caught unawares. Self compassion is important if we are to carry on. AliceA
I feel so guilty but I'm so fed up with it all. I turned 60 at the weekend and had a lovely meal with family and a few friends to celebrate. Oh came and made great effort for me, although am not sure he remembered what it was all about. I haven't been bothered all week and have left him on his own with the dog while I went to meet an old friend who was here from abroad on Wednesday. I told a little white lie because OH doesn't know this friend and I couldn't be bothered to explain. I had a nice couple of hours just catching up and being "normal" for change. It was when I left and my friend said he had always liked my smile, and he hadn't seen me smile all afternoon. I thought I was coping OK now am not so sure. Oh has young onset and has completely changed he rarely goes out unless it's to walk dog or dementia cafe. I am so sad! I have lost him! I don't know how long I can live like this. Sorry to ramble on, but it's so lonely.
Oh lovey11, I so feel for you and understand how difficult this is. I'm pleased you enjoyed your special day - you truly deserve it. Please don't feel guilty, but be reassured that we all feel that at times. I, too, feel that I have lost my other half. Tonight he said to me that "I have a wife but I have no idea what she's called or where she is" ...! - I honestly don't know who he thinks I am ! I am still working and find it a godsend to be able to go and have those hours to be me.... And to laugh and smile and interact on a 'normal' level. It's important that you have time to be you as well... And there is no guilt attached to that.... It gives the strength to continue this journey. Take care
You are quite right - it is SO lonely! and to slip out of the way things are and be 'normal' for a couple of hours, sometimes makes the loneliness harder to bear.
Stay on here, rant as much as you like, we are here for you...... I often think that my greatest emotion is complete and utter disappointment... but there we are. It doesn't get better, but, in the main, we do get better at coping with it all.
Feeling awful about how I reacted today and, to be honest, ashamed. Things have been going so very smoothly lately and even ‘normal’ and could almost forget about her ALZ. Today I went to visit my youngest daughter, a mother of 5 doing a nursing degree who needed support and a sounding board so, as it is something she rarely wants was I was more than willing. OH was happy with that and said why don’t you have a game of golf, meaning the practice field near to my daughter and so off I went and agreeing to be back for lunch which I was. As I opened the door back home I was met by so much anger demanding where I had been and did I know that there was a dirty mark on the hall mat left by my shoes!
Next thing was a tirade of how she has to do everything, which is totally untrue and unfounded, but she was livid. My first words conciltory and automatically non confrontational but with no affect and so I lost it and just yelled and shouted back which became a slanging match followed by silent treatment which nothing can breach or so it seems.
That’s it really, we have sat in silence all afternoon with her, as she does every day, watching the old reapeat TV programmes all of which are recorded overnight and during the day.
I lost all understanding and compassion and at the time just ignored the obvious fact that she had forgotten where I had gone and that she can’t help being obsessive about cleanliness. I know she will forget. Most of this but I most certainly won€t that’s for sure.
Thanks for letting me rant.
I logged on to have a rant yesterday but after reading others posts I just felt my problems were nothing compared to others, so ended up not saying anything. But this morning I feel I must say something or burst.
It's his eating habbits that are getting me down. Yesterday I looked in the fridge and found that two packs of ham were missing. I found the empty packs in the bin. Of course it wasn't him. Later I made extra mashed potato and put it in the fridge with the idea of making potato cakes for breakfast this morning, but yesterday evening I went into the kitchen and found him eating the cold mashed potato.
Then this morning I found him in the kitchen picking bits out of the frying pan that I'd used to make breakfast before I'd had a chance to wash up. The other day I found him drinking cold gravy that had been left. I try to clear the dishes as soon as I can after a meal, but sometimes things get delayed.
This is on top of all the normal meals I'm making for him. He eats well at meal times and always tells me he's had enough. When I find him eating other things I ask him if he's hungry but he says he isn't.
I feel just like you but it’s the daily routine of helping a person to live some sort of life together that is a struggle and kind of breaks me, it is nothing to others struggles, but it is my struggle. I am reading “The Salt Path” by Raynor Winn for book club this month and the struggles of this couple make mine pale by comparison. Very life enhancing though and I can read it or listen on my app in the morning when he is still in bed, lovely time of day for me, but alone.
Do you have a white board? If she is able to read and take in the information, my son suggested a white board which I got for £2 with a marker pen and I print what we or I am doing and prop it up where he can see it. It’s only a small one just bigger than A4.
Good idea though I had no idea that this was coming as things have been great or months so this is worrying.
I left him asleep in bed this morning with a bold black printed message on the white board. I was only out about two hours, I called him while I was out when I thought he would be up and I asked if he had seen the message and he had. Successful so far!
Might be worth mentioning this to the doctor at some point, I have heard of something similar. Rant if you need, never compare yourself to others for good or bad. With this illness we cope with a lot then something else happens and we want to rant or something as an outlet. Better out than in! Xxx
Thanks. Having read this I used the search facility on here and I did find a previous post similar to my problem. The outcome of that post was a referral to the doctor who was unable to help as had not come across it previously. However, I will speak to the doctor when I next see her. We don't have an appointment in the pipeline but if it appears to be an ongoing problem I'll make an appointment.
Hi there. I fully understand you’re emotions as I’ve also had melt downs and subsequent feelings of guilt. I’ve shouted, threatened, bullied, thrown stuff, walked away, and generally been horrible which all turn out to be counterproductive in the end. You and me are just ordinary people, not trained in any way to handle dementia breed problems and it’s as if we are in a prison with no chance of parole, a life sentence of diminishing enjoyment with what we used to enjoy. For example: I no longer do my own things, no longer have independent enjoyment, everything revolves around my wife. She would say it’s ok.
I can’t go out with the family as my OH feels anxious all the time. Same with the few friends we cling on to. Because dementia reduces all normal life is it any wonder we carers are like ticking time bombs waiting to go off.
I’ve been reading this book on Dementia (authors Kate Swaffer and Lee Fay Low ) and it warns that carers need to be aware that our behaviour (as we’ve both admitted above) towards our PWD could be meet definitions of psychological or physical abuse. It advises that in these situations we take ourselves away, safely, calm down, and then get help to manage our stressful levels. Easily said, good advice and I hope to do it but it’s extremely hard. It’s comforting to know we’re all going through the same hell and we’re not some sort of exception in a company saints that seem to handle this caring role with professional ease.
All the best
Thank you and yes I think I need professional help and guidance although council have so far fobbed me off about a carers assement 3 times so far. Time to revisit I think.
To me, it says it all that successive Governments are prepared for us to live like this. I try to explain to the various official bods that I come across - the following way:-
"Suppose you turn up at your office tomorrow and there is a note on the locked door, saying you are no longer a social worker, but you are now a nuclear scientist - get yourself off to the reactor and start work today. No training, no qualifications, no pay, no vacations, no weekends, no nothing....... that is how I feel.
Out of my depth, trying to understand medical issues I had no previous knowledge about, and having lost my previous career - Out of my Depth, Unqualified to do what I am doing, and worst of all, practising this lack of qualification and knowledge, on the person I love most"
They almost understand, but only almost......... thank goodness for this forum, it has taught me so much....
I too don’t know where to go other than here. I recall hardly a moment today when I didn’t feel sick with stress. The behaviour of my husband has been dreadful. Nasty, cruel, selfish, impatient, ridiculous and frankly pathetic. A lot of it is the illness but some of it is just him. I went out to get some food but afterwards found myself driving past my village and away in the opposite direction as I couldn’t face going home. Then when I did go back I sat in the car outside for quite a while listening to nothing much on the radio as I really didn’t want to go into the house. It’s not home - it’s another workplace, and I really don’t like this job one little bit.
Well yes, about taking yourself away but then the PWD follows you. I am due to have a hip operation (Oh in nursing home now after carer breakdown - me and awful accident - him). They keep on about not having baths and I ended up explaining that for THREE YEARS I did not have a bath as OH would make this hell, am quite happy with strip washes. I think they now have me down as a mad woman. But dear God, what about the abuse we take???? I am still trying to recover, even though my OH has been in nursing home for a year now. Yes, we are going through hell together. Being imprisoned with no time off or hope with someone who is going mad, or already mad is terrible, and you have had to give up so much. All the very best to you, I am so sorry, please keep posting, we all have to have a rant. After all, PWD do!
with warmest wishes, Kindred.
I hate this job - I wish I could resign - but it does not work like that, does it? He can't understand, because he doesn't even think he has dementia.
I feel for each and every one of us one here -what are we supposed to do, it's like a curse dropped on us that we can do nothing about...
You missed one - NO HELP