Needing someone to grab me by the shoulders and give me a good shake and to tell me to pull myself together. I`ve tried telling myself that at the moment I am fortunate compared to so many carers who post on here, and to buck my ideas up. But it is not working! OH and I have been "celebrating" the festive season on our own, except for a token gesture visit of a couple of hours by 2 of OH`s daughters during the week. I just feel so alone. OH and I never have a proper conversation these days. Even when we go shopping, for a walk or watch television, they are all done in virtual silence. I can understand OH`s reluctance to talk as he often struggles to find the right words so hesitates to say anything. Watching television is a nightmare, old re-runs and far too many "dash cam" and "Australian Border Force" , 90% which have been on time and time again. I seem to have no thoughts other than things will get worse, but instead of being grateful for how things are I just slump into this selfish feeling of loneliness, doom and gloom. So, will appreciate it if someone can give me a verbal kick in the proverbial.
Feeling guiltily sorry for myself
- Thread starter Anthoula
- Start date
Palerider
Registered User
I think we all go through these phases and I am no exception. I often have to kick myself even now. It does become lonely for many people and I am sure they are all out there thinking the same thing right now. What matters is that you are aware of it and maybe you can find ways of giving yourself a lift without overstretching yourself doing it. Sometimes we forget that without us our PWD would be very lost and while it is a choice we make to care, we can acknowledge from time to time that we are in our own way heroes
SeaSwallow
Volunteer Moderator
Oh @Anthoula you do not need a kick anywhere. What you need is an occasional respite break so that you can get out of the house, perhaps meet some friends, do some shopping etc. None of us can cope with the unrelenting caring.
My four hour weekly respites were only granted recently but what a difference they have made.
Contact your social worker and lay it on thick that you need some respite, don’t take no for an answer.
You are not alone, most, probably all of us find it hard to cope. And Christmas /!New Year can make things seem worse.
My four hour weekly respites were only granted recently but what a difference they have made.
Contact your social worker and lay it on thick that you need some respite, don’t take no for an answer.
You are not alone, most, probably all of us find it hard to cope. And Christmas /!New Year can make things seem worse.
Hi Anthoula
Don't be too hard on yourself. I often feel like you do and it's okay to feel that way. I think particularly at this time of the year when everyone else seem to be having such a great time.
OK for kick up the proverbial: make time for yourself every day- go for a walk, read...whatever you can make time to do. It is your life too. You've got to have some enjoyment too. I've been trying to compartmentalise my life and be more resilient (not always easy).
I totally understand and feel your pain of the endless silences, lack of any conversation, repeating watching the same tv programmes. I often go and sit in the kitchen listen to music, read a book, drink wine to keep me sane.
I've given myself some tasks/projects to do-
I've started swimming lessons (I'm 61 and never learned to swim but I'm going to).
I did have some counselling about 6 months ago referred through my GP at the Memory Clinic which I found very helpful. A lot of it is about having a positive frame of mind. ( not easy).
I wish you all the very best and hope you can find some support in knowing you are not alone.
Don't be too hard on yourself. I often feel like you do and it's okay to feel that way. I think particularly at this time of the year when everyone else seem to be having such a great time.
OK for kick up the proverbial: make time for yourself every day- go for a walk, read...whatever you can make time to do. It is your life too. You've got to have some enjoyment too. I've been trying to compartmentalise my life and be more resilient (not always easy).
I totally understand and feel your pain of the endless silences, lack of any conversation, repeating watching the same tv programmes. I often go and sit in the kitchen listen to music, read a book, drink wine to keep me sane.
I've given myself some tasks/projects to do-
I've started swimming lessons (I'm 61 and never learned to swim but I'm going to).
I did have some counselling about 6 months ago referred through my GP at the Memory Clinic which I found very helpful. A lot of it is about having a positive frame of mind. ( not easy).
I wish you all the very best and hope you can find some support in knowing you are not alone.
Oh @Anthoula you have every right to feel the way you do, and everything seems heightened at Christmas when so much is supposed to be about the fantasy of happy families. There is nothing good about living like this - for the PWD or the carer and it is natural to grieve for what you have lost. I am also going to get some counselling this year - 10 years ago I thought I knew what life had in store. The last 6 years have been a living hell as OH succumbed to dementia and became an angry stranger, plus living with the loneliness, the fear and uncertainty. Hugs to you - you are not alone xxxxx
canary
Registered User
@Anthoula
If it were someone else, do you think that telling them that they need a kick up the proverbial and to pull themself together would be helpful? I dont think so.
You are in distress because your own needs are not being met.
You need to find some way of meeting these needs, or you will reach carer breakdown.
Some form of respite is needed - a befriender, someone to take him out somewhere, day care, mens sheds, whatever, but you need something.
If it were someone else, do you think that telling them that they need a kick up the proverbial and to pull themself together would be helpful? I dont think so.
You are in distress because your own needs are not being met.
You need to find some way of meeting these needs, or you will reach carer breakdown.
Some form of respite is needed - a befriender, someone to take him out somewhere, day care, mens sheds, whatever, but you need something.
Ginger Biscuit
New member
Swift kick coming up Anthoula. I understand it doesn't seem like it but you are one of the lucky ones. If your OH can go for a walk, go shopping with you and watch TV, then unless his just been recently diagnosed, he's doing great. I seriously doubt if there's a carer who is looking after a family member who hasn't felt the way you're feeling at some point (or lots of points). We also have the "it's only going to get worse" thoughts which makes it hard to think positive.
The only thing that seems to help me at such times is mentally swapping places with my OH and imagining how I'd feel if I had dementia and he was my carer. If your OH likes TV could you get Netflix or Amazon Prime to give you both more viewing choices? When he tries talking to you do you manage to appear as though you have all the time in the world to wait while he finds the words or are you impatient? Does he have any interest in doing jigsaws, reading, simple online games? Has he had a hearing test recently? Do you have any hobbies of your own?
You sound as though his daughters aren't your favourite people but if they live locally could you arrange with them to come and have some 'dad' time for a couple of hours so you can go out if he can't be left on his own? My last thought is random hugs - they'll make him feel safe and be of benefit to you as well. There's no getting away from the fact that being a carer drains the 'you' out of you and is probably a position that none of us expected to be in. I'm really glad we have Talking Point - it often saves me from screaming.
Thank you Ginger Biscuit, but no I do not consider myself one of the lucky ones. Having lost 2 husbands and having cared for 24 years for my late son, who suffered with status epilepsy and had severe behaviour and personality disorders, and then 3 years caring for my mother with alzheimer`s and now 3 years caring for OH I feel that I have missed out on a great deal of life. I try to remain positive and optimistic, I really do, but these past few days have dragged me down. But thank you for the "kick", it has awoken my fighting spirit.
hello this is the fact time I have posted and feel as you do . However my guilt relates the fact my partner is in a care home.He is being looked after very well. You need to realise it is not your fault relating to the dementia. Take care
@Anthoula . You certainly are not one of the lucky ones and the last thing anyone on here needs is a post like the one from our new member who seems to think they know all about the rest of us.
That was rude and unhelpful.
Oh Ginger Biscuit, I know it sounds simple - Anthoula's OH isn't too far into this horrible disease and all she has to do is put herself in his shoes, give him more time to respond and give him plenty of hugs and all will be fine and she'll feel replete. As our OHs descend deeper into themselves, however we nurture, cajole, protect, project the result is still the same. At each stage your grief is for what you've lost and have still to lose. It's a sad and lonely place, and an arm round Anthoula's shoulder and a, 'we know' comment is all that's needed, she doesn't need a 'swift kick'.
jennifer1967
Registered User
i dont think anyone is lucky when caring for a PWD. mine has been diagnosed for 2 years had it 3 of vascular dementia. yes he can still go out on his own but with a taxi to mens shed or local shops. he also has a mobility scooter to go to local shops. great you say, im housebound so if he doesnt go out i dont get a break. i cant really go out so shop online. no walks. i have put all the safeguards in place, helping cards, my contact number, he has a mobile i can ring if he is late getting back. i organised that myself to help him to retain his independence and that i have a break. mens shed i organized. we dont have carers as he doesnt want and has capacity so i do his showers, appt, help dress and a million other things. i manage the house as he has COPD as a bonus. i do all this while disabled and with chronic pain. there is no understanding about disabled carers.
maybe read a few more threads and perhaps think before you tell people they are lucky to care for a PWD. everyone loses one way or another in different ways.
I often remind myself that things could be so much worse, my husband has Behavioural Variant FTD, he is completely consumed by apathy which means he sits and mindlessly watches tv while life goes on around him he doesn’t go out and unable to walk even coming downstairs without being out of breath. I am able to
Leave him unattended for several hours. But quite honestly it doesn’t make up for everything else that I have lost, and I know it’s the disease and not his fault!!
My mother lived with us for 6 years until she passed with vascular dementia. But we made the decision for her to move in and care for her, and I had my husband for support.
Caring for my husband is far more sole destroying . I have moments of
there is nothing to feel guilty about. My husband’s apathy on the surface makes it look as tho he is “easy” to care for, I am able to leave him unattended for several hours to go shopping and see friends.
But everything else I have lost makes it sole destroying . During a counseling session I said “ it feels like I am tied to a log”, those words shocked me when they came out of my mouth!
Jale
Registered User
Won't give you a proverbial kick up the rear end but will send some hugs for you. Caring for someone with this flipping awful illness affects people in many different ways, if only there was a one size fits all scenario things "might" be a bit easier.
We were offered the chance for someone to come in and sit with mum and have a chat and a cuppa (she refused outright) but it may be worth investigating if that would be possible for you - I think it was the social worker who made the offer but it could have come from the carers trust - sorry not sure on that.
I hope you can get something sorted for your own mental health, once you are dragged down it is difficult to find a way ack up (hope that makes sense)
We were offered the chance for someone to come in and sit with mum and have a chat and a cuppa (she refused outright) but it may be worth investigating if that would be possible for you - I think it was the social worker who made the offer but it could have come from the carers trust - sorry not sure on that.
I hope you can get something sorted for your own mental health, once you are dragged down it is difficult to find a way ack up (hope that makes sense)
Hi @Anthoula, I can understand how you feel and I am not going to give you a kick or a shake because you don't deserve that.
Some of us here experience worse or not so bad as others but I am sure that we all feel the doom and gloom of it at times.
I had a major blip with OH on Christmas Day that knocked me down and I got a lot of kind words and support here. I feel better now but those niggly thoughts of loneliness and loss still keep trying to trickle through. You're doing the right thing in trying to pick yourself up and dust yourself off and you will do it. Meanwhile, try not to beat yourself up too much xx
Yvonne1964
Registered User
Hi my husband has Alzheimer’s I know how you feel my husband hardly talks to me I only go out if he wonts to go out which if I’m luck will be once every two weeks he watched the same old programs he keeps the tv remote by him I’m not allowed to touch it or watch what I won’t until he has seen all he’s programs then when I watch mine he moans all the way through them I just sit there quietly thinking please stop begin horrible my husband had changed a lot since Christmas and new year have finished he has got worse it is the loneliest I have ever feltI think we all go through these phases and I am no exception. I often have to kick myself even now. It does become lonely for many people and I am sure they are all out there thinking the same thing right now. What matters is that you are aware of it and maybe you can find ways of giving yourself a lift without overstretching yourself doing it. Sometimes we forget that without us our PWD would be very lost and while it is a choice we make to care, we can acknowledge from time to time that we are in our own way heroes
Oh Anthoula, I agree with most of the others who have posted replies here. I can so relate to your feelings, although it's my elderly mum who has the severe dementia, and although in care, she is still in my head all the time, and I feel the constant pressure of feeling that I MUST visit her regularly... I am the only one who does. Can I offer as another suggestion, which I have newly discovered... look up some ASMR videos on Youtube and just watch. Some are designed to help sleep, but fundamentally they induce a feeling of relaxation and calm as you watch them. Lots of different types. I've also looked into total beginners' yoga also on Youtube. I find that when my stress levels (wanting to scream and explode) build up, or I feel incredibly sad, anxious and gloomy, these do help. A lot are only short, so you don't need to sit at the computer for hours, if time is short. Look after yourself, you are NOT selfish in wanting to feel better. Also I don't think you are "lucky" in your situation. I don't think that a comment like that helps at all. Reading your extra comments shows that you have a hell of a lot to deal with, as we all do in a variety of ways.
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sapphire turner
Registered User
I agree that it is unhelpful and unfair to go down the “you think things are bad for you but it could be so much worse” rabbit hole. We all know that things could - and almost certainly will - be worse. There is no chance of recovery or getting better for our loved ones.
It is more helpful to concentrate on what we can do today to make our lives a tiny bit better so that we can bear this, so that we can go the distance and still have something of ourselves left come the end.
I am trying to move away from coping with the stress with alcohol and find some other less damaging ways to feel calm. I will certainly look up the YouTube videos, they sound nice!
Sending love to everyone xxx
It is more helpful to concentrate on what we can do today to make our lives a tiny bit better so that we can bear this, so that we can go the distance and still have something of ourselves left come the end.
I am trying to move away from coping with the stress with alcohol and find some other less damaging ways to feel calm. I will certainly look up the YouTube videos, they sound nice!
Sending love to everyone xxx
Grannie G
Volunteer Moderator
That was my strategy for coping too.
