Trying to move on, but struggling ...

[Marnie63]

I don't post much these days, but I do check in now and again as I still feel this is the only place where people understand dementia, and all that it bestows upon us.

It was a year yesterday since mum died. Initially I thought I was doing OK. I distracted myself with lots of contact with friends and a few holidays, but I now think that didn't do me a huge favour as I seem to be coping worse now than I was then. I'm not crying as much, but my head is still full of all the horrible dementia memories, upsetting my thoughts, and stopping me from moving on with my life. Am I depressed? I don't know, I don't think so. But I feel so down at times. I have no purpose in my life now. Dementia seems to have taken so much away from me - not just my lovely mum, but my job, my ability to work and my confidence as well. What a horrid disease. I hate what it does to family and carers, as well as the sufferer.

One year on, I have no regrets about how hard it was caring for mum, but I'm not in a good place. Maybe it's too soon, maybe I need more time. Maybe I need to go and see that counsellor again. Will I ever get over this? Probably not. Will I ever feel any better about it all? I hope so. It has definitely changed me, and not in a good way.

The counsellor who I went to see a couple of times while caring for mum was good, but I don't think she really 'got' dementia, which didn't help. I wish there was someone out there who really understood what we go through as carers, and specialised in post caring counselling. I've been through a huge trauma, but feel there's help for me out there.

Maybe I just need more time … I hope so!

 

[Palerider]

I don't post much these days, but I do check in now and again as I still feel this is the only place where people understand dementia, and all that it bestows upon us.

It was a year yesterday since mum died. Initially I thought I was doing OK. I distracted myself with lots of contact with friends and a few holidays, but I now think that didn't do me a huge favour as I seem to be coping worse now than I was then. I'm not crying as much, but my head is still full of all the horrible dementia memories, upsetting my thoughts, and stopping me from moving on with my life. Am I depressed? I don't know, I don't think so. But I feel so down at times. I have no purpose in my life now. Dementia seems to have taken so much away from me - not just my lovely mum, but my job, my ability to work and my confidence as well. What a horrid disease. I hate what it does to family and carers, as well as the sufferer.

One year on, I have no regrets about how hard it was caring for mum, but I'm not in a good place. Maybe it's too soon, maybe I need more time. Maybe I need to go and see that counsellor again. Will I ever get over this? Probably not. Will I ever feel any better about it all? I hope so. It has definitely changed me, and not in a good way.

The counsellor who I went to see a couple of times while caring for mum was good, but I don't think she really 'got' dementia, which didn't help. I wish there was someone out there who really understood what we go through as carers, and specialised in post caring counselling. I've been through a huge trauma, but feel there's help for me out there.

Maybe I just need more time … I hope so!

Maybe you coud become one of those specialist counsellors??

 

[jaymor]

Hi @Marnie63 ,

I’m so sorry you are feeling so down. I cared for my husband at home for 7 years without any outside help so I do know how intensive and hard it is. My husband would not tolerate anyone in our home so it had to me alone.

He then went into nursing care for 4 years and died three and a half years ago.

I understand your feelings clearly, the first twelve months with each passing of the ‘first’ of everything was extremely painful. There were days when I just sat and did nothing. Then slowly the cloud lifted and there were more good days than bad days. now life is mostly good, not the one I envisaged retirement would be like but better than I thought it would be without my lovely husband. There is not a day goes by that I don’t think about him but I can smile when thinking about him.

I don’t think there is a set time for grieving or mourning the loss of someone so close to us. The pain will remain but not at the same intensity as it starts out. Be kind to yourself, give yourself time and hopefully you will find that the difficult experiences will lessen and certainly try the councillor again and keep posting here, there is always someone here for support.

Take care.

 

[Pete1]

Hi Marnie, I totally get where you are coming from and share many of the same feelings and thoughts. I went to my GP a few months after Mum died (at the insistence of my sister as I never go the the Doctors!) and I was diagnosed with depression, and ended up going for bereavement counselling, which actually helped a great deal - the counsellor actually had good insight into the effects of dementia, and what is known as the 'long good-bye' (that you can often go through stages of bereavement as the loved one is still alive but changing due to dementia). Might be worth you exploring that as an option with your GP - I certainly would never have envisaged myself going through this type of counselling but it did help me.

I know what you mean about focussing on 'horrible dementia memories', I think that is only natural - in fact I pretty much empathize with every thing you have said! It will take time but gradually those 'bad' memories will fade and be replaced by better ones, I have dealt with similar loss many years previously too (in my first post I explained my situation). It isn't easy though an it takes time. I certainly found the counselling helps as after a year you don't feel you can talk to anyone (friends, family etc) about it, as there is a feeling you will be 'over it', but some of the things we have seen are so heartbreaking they live with you, and in a strange way draw you even closer to that loved one with a desire to protect, and these experiences are inevitably mixed with feelings of guilt and regret - and it is difficult for someone who hasn't experienced it to really understand, and to be honest how can they? I wish you all the best - look after yourself.

 

[Marnie63]

Thank you for the kind replies. I feel it would be really useful to have someone to offload to, in person, about how I feel. That's where someone who 'understands' would come in really useful. I have just emailed the local CRUSE group to see if they can recommend at least a specialist bereavement counsellor, if not someone who 'gets' dementia. I can but try. Would the GP have details of local bereavement support? It feels like I would be taking up their time on this, when they have 'sick' people to deal with!

One thing I must try not to do is to be angry with the wrong people. We all know how upsetting and, sometimes, really annoying it can be when people make crass remarks, but it's no use getting angry with someone who doesn't understand. It's not their fault after all! I had some friends staying with me recently, a couple, and just because I had got rid of a TV from my main lounge (it broke and I decided not to replace - have another small one in another room), the husband seemed to think I just sat in the house all day and did nothing, and the wife said things like "I'd go crazy if I just stayed in the house all the time". Well I don't, but it's my home, so I'm not going to go out and roam the streets just for the sake of it! And this is where I feel there's something not quite right with me - these are good friends, and I am getting angry at them for, well, trying to help, I suppose. How can they understand where I'm at if they haven't had the same insight into dementia that I have?

I'm not one to take pills unnecessarily, in fact I won't take anything unless I absolutely have to, but I've even started to feel that some kind of 'mood lifter' might be good for me. But I know that pills are not the answer to this.

 

[Sam Luvit]

Hi @Marnie63

What you’ve said does sound like depression, or PTSD, which is totally understandable when you think about the intensity of our lives while living through the hell of dementia. You filled your days, while I emptied mine. Just different ways of coping with the intensity of our feelings

I do think you should try counselling again. Ask your GP for a referral, or self refer if you prefer, but ask for someone with some dementia experience or understanding. The councillor choice has a big impact on the results ... I saw one who was totally ineffective and just compounded my feelings of inadequacy as I couldn’t make them understand.

I’m not sure you “get over it”, so much as learn to live with it. I can now talk about some funny times with mum, but there are also times when it punches me in the gut and I struggle to hold in the tears. Time is the only real healer, IMHO, but you need some guidance on how to move through the treacle of your emotions to get there.

Different things work for different people and different time spans .... I hate that people think you should be “over it” after three months As if that wouId be possible.

 

[Sam Luvit]

I’ve had a quick look at your area, two links below that might be helpful

https://www.bereavementsupportgroups.co.uk/
they have an “anticipated grief” section, so might have the support you are looking for

or this one
https://support.sueryder.org/community/coping-bereavement/carer-bereavement

Sorry if it’s not what you are looking for, but it might be a start

 

[Marnie63]

Thanks @Sam Luvit!

 

[Lawson58]

I ha

Thank you for the kind replies. I feel it would be really useful to have someone to offload to, in person, about how I feel. That's where someone who 'understands' would come in really useful. I have just emailed the local CRUSE group to see if they can recommend at least a specialist bereavement counsellor, if not someone who 'gets' dementia. I can but try. Would the GP have details of local bereavement support? It feels like I would be taking up their time on this, when they have 'sick' people to deal with!

One thing I must try not to do is to be angry with the wrong people. We all know how upsetting and, sometimes, really annoying it can be when people make crass remarks, but it's no use getting angry with someone who doesn't understand. It's not their fault after all! I had some friends staying with me recently, a couple, and just because I had got rid of a TV from my main lounge (it broke and I decided not to replace - have another small one in another room), the husband seemed to think I just sat in the house all day and did nothing, and the wife said things like "I'd go crazy if I just stayed in the house all the time". Well I don't, but it's my home, so I'm not going to go out and roam the streets just for the sake of it! And this is where I feel there's something not quite right with me - these are good friends, and I am getting angry at them for, well, trying to help, I suppose. How can they understand where I'm at if they haven't had the same insight into dementia that I have?

I'm not one to take pills unnecessarily, in fact I won't take anything unless I absolutely have to, but I've even started to feel that some kind of 'mood lifter' might be good for me. But I know that pills are not the answer to this.

I haven't been through the loss that you have experienced but I do know how hard it is to find a counsellor who gets it.

About three years ago, I was feeling very depressed about coming to terms how my life was and was referred to a psychologist as well as being put on to antidepressants.

The first psychologist I saw was brilliant. She was quite young but absolutely dedicated and just as I was starting to make some progress, she left the practice to go and work with disturbed teenagers. I have to say that I often think about my sessions with her and rely on what we did to get me through.

The second was another at the same practice who took me on when the other left. Nice lady. Let me have a rant but we achieved nothing.

The third had the reputation and fees of being a poster boy for psychology but how can someone who has post graduate qualifications in psychology and a good number of years in practice not know anything about dementia? He admitted that he didn't know anything about it so just didn't understand that one tiny little thing could be a trigger for a huge slump in my mood, didn't get that little things could be an accumulation of everything that had happened that day/week/month.

Now I just take my antidepressants and resign myself to living life as it is now.

And you sound as if the loss of your mum has just hit home, hit you for a six. It has taken you a while for the grief to set in and that is a form of depression but one that is explained by your experience. I think it is healthy for you to be striving to resolve it as I see it as taking a forward rather than a backward step.

I really hope that you find someone to talk to, to help you through this sad time in your life. There is a gap that as yet you don't know how to fill but that will come eventually .

 

[Marnie63]

I've made contact with a local branch of CRUSE (bereavement support charity) and will be speaking to someone by phone tomorrow, so have made some progress. I also feel better that I've reached out to someone, so not wallowing alone in this.

I suspect GP will refer me to 'Talking Therapies', which is what happened last couple of times, and all I had was a load of self help web links! I'm afraid I didn't find that useful at all. Maybe it's time to lay it on a bit thicker with the GP, if I want to get help through those channels.

Thanks again for kind words.

 

[LadyA]

Hi @Marnie63 .
A few months after my husband died, I picked an elderly neighbour up and gave her a lift. She was widowed for many years. After sympathising on my own loss, she went on to say "...everyone says that the first year is the hardest. All those "firsts", first birthday without them; their first birthday without them; first wedding anniversary without them, first Christmas, and then the first anniversary of their death. But, actually, the second year can often be much harder. Because in the first year, we kind of focus on getting all those "firsts" over with. And then we reach the first anniversary of their death, and we find that nothing has changed. They are still dead. And that's when it comes really home to us, that this is forever. They are really not coming back."

I was glad for those words, because I, too, found that the second year was much harder. There was a sense of, not "loss", but "being lost". I didn't know what to do, and felt that I was just filling in my time. Four years on, I still don't really know what to do, but even with that feeling that I'm just marking time, I've found that life does not allow us to opt out. It keeps moving forward, and takes us with it. So, while on the one hand, I still feel that sort of emptiness, on the other hand, my life has filled up with other things.

I came to the conclusion that dementia leaves scars on us that maybe other illnesses or deaths don't. It's that very long knowledge that we are fighting so many battles, while the war has already been lost. It's the particular hellish cruelty we see the illness ravaging on our loved ones, and we are powerless to stop it's relentless progress.

I do hope your counselling helps, and wish you well.x

 

[Grannie G]

It was a year yesterday since mum died. Initially I thought I was doing OK. I distracted myself with lots of contact with friends and a few holidays, but I now think that didn't do me a huge favour as I seem to be coping worse now than I was then.

It seems this happens to many of us. We manage the first year but then reality dawns that this is permanent and the real grief begins.

Do talk to someone if you think it can help.

I found reasoning with myself helped me. eg Few couples die together unless they are in an accident and it`s the natural cycle for parents to die before their children.
It doesn`t help fill the hole but it did and does help to keep reminding myself it`s me in the company of millions.

 

[Sam Luvit]

The first step is the hardest to take, so well done on doing that @Marnie63. Hopefully you will get some proper support this time

https://beta.nhs.uk/find-a-psychological-therapies-service/search If you fill this in you should be able to self refer, if your GP isn’t being too helpful. I thought I was “fine” , my GP didn’t agree and I was seen very quickly. (I did cry a lot ). Don't be brave when you talk to the GP, tell them how you feel.

 

[Marnie63]

Hi @Marnie63 .

I came to the conclusion that dementia leaves scars on us that maybe other illnesses or deaths don't. It's that very long knowledge that we are fighting so many battles, while the war has already been lost. It's the particular hellish cruelty we see the illness ravaging on our loved ones, and we are powerless to stop it's relentless progress.

That sums it up really well @LadyA. Maybe because of this, it will just take much longer to come to terms with mum's death. It's the 'hellish cruelty' that is causing me the most issues - just can't get it out of my head.

 

[KeddyL]

I could read and move on. Needed to write a little message.

My mum died of dementia this year. Aged 57. I have been plagued with visions of her and the imagine of her dying. I really do understand xxx

 

[Marnie63]

The first step is the hardest to take, so well done on doing that @Sam Luvit

[URL]https://beta.nhs.uk/find-a-psychological-therapies-service/search[/URL] If you fill this in you should be able to self refer, if your GP isn’t being too helpful. I thought I was “fine” :rolleyes:, my GP didn’t agree and I was seen very quickly. (I did cry a lot :eek:). Don't be brave when you talk to the GP, tell them how you feel. :confused:

Thanks @Sam Luvit. Did you actually get to speak to someone face to face?

 

[Spamar]

I tried Cruse. Might of well saved my breath to cool my porridge!
However, found a couple of people locally who seem to be better. Four years on and I’m still not ‘right’ so getting desperate!

 

[Sam Luvit]

Thanks @Sam Luvit. Did you actually get to speak to someone face to face?

Yes. Face to face. I was “coping”, but when I did the “tick box” form, I realised I wasn’t coping at all. Turns out I was borderline crashing.

Talking through how I felt has helped .... I should go back again, but as you know, that’s hard to make myself do

 

[lis66]

I'm still on this journey with my mum and it has affected my emotions terribly I've had three courses of councilling which has helped a bit but this illness is horrendous and I don't think I will ever forget how it has affected my poor mum and me I hope someday I do x

 

[Anna T]

I'm still on this journey with my mum and it has affected my emotions terribly I've had three courses of councilling which has helped a bit but this illness is horrendous and I don't think I will ever forget how it has affected my poor mum and me I hope someday I do x