One year on and feeling numb

Whisperer

Registered User
Mar 27, 2017
382
0
Southern England
Dear All

Wednesday was the first anniversary of my mother’s death. I went to the garden of remembrance with no real expectation of how I might feel on the day. Her funeral had taken place on 1st March 2021 under strict Covid19 restrictions. Limited numbers could attend, no singing or hugging, move on rapidly after the service as another was waiting to start. Not the best of memories about the location.

Firstly I looked at the entry in the book of remembrance and took some pictures to email to other family members. The words I had so carefully thought about were just that. Words on a page which had no impact on me. The plot number where mum’s ashes were laid to rest was pretty bleak on this winter day. I spoke to two other people attending to remember their lost loved one. Finally I ended up sat on a park bench holding my dear mum’s favourite teddy wondering what life is all about. I would have accepted any emotional response but to be just left numb was not what I would have expected.

This sense of numbness has been growing in 2022. Throughout most of 2021 I was wrapped up in grief, hardly a day going by without tears and feelings of great loss and isolation. Executor of mum’s will involved a lot of documentation and nearly everything made harder under Covid19 various rules. I had dreaded Christmas, but surprisingly it went quite well, pulling up a lot of preDementia memories of mum.

I had a sleepless night last night and in the small hours I realised that I have come full circle. During my shielding year with mum her Dementia had really gathered pace along with other issues. To deal with matters I mentally acknowledged each set back, but then buried it from my thoughts to allow me to operate effectively as mum’s carer. Increasingly I got detached from my emotions and feeling more mentally numb. It was the only way I could cope on my own. No doubt many other carers did the same. Then a wave of grief hit me when mum died and the caring role ceased overnight.

Gradually that grief has eased somewhat but I think that has left me back where I was in early 2021 as regards all of my other emotions. They are effectively numb. Has anyone else experienced this coming out of the initial period of intense grief and moved onto feeling nothing. It is happening in my physical life as well. I eat, sleep, go to work, listen to music I loved and now just hear the notes, cannot settle to read books by favourite authors. Just after Christmas it felt like some tentative colour was coming back into life, but now it is black and white again, I feel like I am existing not living.

I know mum would want me to enjoy my remaining life but that does not help. I have very limited contact with two siblings, no partner or children, friends all fell away during six years of caring. Part of me feels a little bitter. Thanks for everything you did for mum but bye. Carers are “valued“ right up until the moment the role ends then it seems you are on your own. Are there any groups ex carers an join to try and learn how to rebuild their life. I am starting a course of counselling shortly and hope that might help. At present I am emotionally flat, with just an all embracing feeling of sadness, loss and isolation. Not depression I think just a void.

I would like to hear anyone else’s comments and suggestions. Please tell meI am not alone in how I am feeling right now.
 

Max71

New member
Jan 10, 2019
5
0
No Whisperer, you are not alone, I feel for you so much.
I can fully sympathise with you. It has been 8 months since I lost my wife after 51 years of marriage,and I was her sole carer for her last 7-8 years and it was full on 24/7 caring for the last 4 years. It was hard going and I feel devastated at her loss, I have an overriding sense of sadness and grief. Just over two weeks before she died I became ill with heart problems and was taken to hospital, fortunately my Son and Daughter stepped in to look after my wife but she was herself then taken in to hospital after 5 days, and this is why I feel on top of everything else, so angry and blame myself as I feel that because I wasn’t at home with her that I precipitated her decline and put my Son and Daughter in a difficult situation.
My grief is still very real, I cannot move on with life.I go to my Son and Daughter twice a week for dinner, which is nice, but nevertheless I feel alone, especially when I close my front door on coming home. I feel that I’m drifting rather than living. I cannot really focus on anything. I am on my third course of bereavement counselling, but I can’t say that it has helped greatly. All I get from them is that it will take TIME. I sleep with difficulty and everyday I shed tears from thinking about her, past memories or hear a sad song. It is just so so difficult you can’t describe it to anyone. I have some good and understanding neighbours.
All I can say again is that you are not alone, I am sure that there are many many people in our situation. I’m afraid I don’t know what the answer is, try and keep going. I’m sure that you loved you mum very much and this will sustain you in the future.
The most benefit I have had recently, is when I joined for 9 weeks a walk and talk bereavement group of like minded individuals who have all lost loved one’s. We would walk a bit then have a coffee and then a counsellor from the local hospice would talk to us.
Anyway, please look after yourself and I wish you all the best.
 

Whisperer

Registered User
Mar 27, 2017
382
0
Southern England
No Whisperer, you are not alone, I feel for you so much.
I can fully sympathise with you. It has been 8 months since I lost my wife after 51 years of marriage,and I was her sole carer for her last 7-8 years and it was full on 24/7 caring for the last 4 years. It was hard going and I feel devastated at her loss, I have an overriding sense of sadness and grief. Just over two weeks before she died I became ill with heart problems and was taken to hospital, fortunately my Son and Daughter stepped in to look after my wife but she was herself then taken in to hospital after 5 days, and this is why I feel on top of everything else, so angry and blame myself as I feel that because I wasn’t at home with her that I precipitated her decline and put my Son and Daughter in a difficult situation.
My grief is still very real, I cannot move on with life.I go to my Son and Daughter twice a week for dinner, which is nice, but nevertheless I feel alone, especially when I close my front door on coming home. I feel that I’m drifting rather than living. I cannot really focus on anything. I am on my third course of bereavement counselling, but I can’t say that it has helped greatly. All I get from them is that it will take TIME. I sleep with difficulty and everyday I shed tears from thinking about her, past memories or hear a sad song. It is just so so difficult you can’t describe it to anyone. I have some good and understanding neighbours.
All I can say again is that you are not alone, I am sure that there are many many people in our situation. I’m afraid I don’t know what the answer is, try and keep going. I’m sure that you loved you mum very much and this will sustain you in the future.
The most benefit I have had recently, is when I joined for 9 weeks a walk and talk bereavement group of like minded individuals who have all lost loved one’s. We would walk a bit then have a coffee and then a counsellor from the local hospice would talk to us.
Anyway, please look after yourself and I wish you all the best.
Dear @Max71

Hello and thank you for replying. Please accept from a concerned stranger that you have no need to fault yourself over the circumstances of your wife’s death. The last four years of your caring was full on, you went into hospital with heart problems. Your wife of 51 years loved you deeply, as you in turn loved her. Hold onto that precious memory as you move into the future. You have absolutely no reason to logically hold yourself to any type of account. That said I understand the feelings and emotions often do not do logic very well. I understand how you feel on that point, you have my empathy. I had to leave mum in hospital to get some rest and she died alone in an isolated side room off the ward. I still blame myself for that in darker moments, but I then tell myself to let it go. I went home utterly exhausted, I needed fresh clothes, food, etc. It works sometimes.

I fully understand your comments about having dinner with your son and daughter, but then having to return to an empty house. The silence I know is sometimes deafening. I have tried to take the edge off it by listening to music I use to love, but now it is only notes being played. Quite often I turn it off only to later turn it back on. I do understand your comment.

I had some brief counselling in April 2021, over the phone and just a short course for a few weeks. At that time COVID rules prevented direct contact. I am far from over my grief but the initial very intense period did ease about Christmas time. TBH the initial counselling I had was to soon for me and the best a voluntary local charity could offer, when faced with a huge demand. Hopefully this second chance at counselling over Zoom will go better for me. I suggest hold off for a while, let the intensity of your grief reduce somewhat then try again.

Perhaps based on my comments starting this thread I am the last person to give advice, but please accept the following are my experience of grief over mum, who I lived with for over 32 years. We were not married but we were mother and son, best friends, companions, confidants when things bothered either of us, we loved and trusted each other. We were the odd couple in some people’s eyes but it worked for us. Firstly grief does slowly lose the initial intensity. It helped me trying to remember things we did pre her Dementia. I got mum through nearly seven years of developing Dementia, I did not fail her. You did remarkably well in your caring role, based on deep love. You did not let your wife down in those last few days. Please hold onto that thought when your grief is at its strongest. Secondly I wish I could tell you something different, but that underlying sense of sadness and loss I am realising is the long term price we pay for having loved someone very dearly. When it now settles on me I accept it, but I say out loud to myself “I loved you mum and I still do”. It does me some good and perhaps in an After Life (?) she hears me. Thirdly, as you say, neither of us know what the answer is. I understand about the hiking group, how it could help you. Yet again in caring we experience the postcode lottery. Sadly there is nothing like that in my area. The group may have been time limited, but did you by chance make any contact which you can sustain going forward. Coffee in the cafe, a walk in the park, etc.

My dear unknown soul mate thank you for replying to my thread. I admire you for sustaining a long term loving relationship, which your wife equally enjoyed. Two grown children. Please lean on them in these difficult times. I have no doubt they are missing their mum and are worried about their dad. Close family ties are a great source of strength. We both know grief, in different ways we each were lucky to have special ladies in our lives, enriching them beyond measure. Perhaps that is part of the answer. Okay we get given the grief, but we can hold onto the love and the memories. Please take care.
 

Whisperer

Registered User
Mar 27, 2017
382
0
Southern England
Dear All

After several days of thinking about things I have come to a decision. I no longer belong on this website. Firstly I am no longer a carer. My journey ended one year ago. Secondly I am being inconsiderate, borderline immature. I am asking for help and guidance from people who are busy just caring and protecting loved ones. Thirdly as I promised mum this year I am going to start some charity work, which will develop more fully when I retire completely. It is not in the Dementia field. I would find voluntary work in that field just to distressing at present. That might change in the future.

i left this website previously regarding it as a temporary move, but having returned I realise it most probably will have to be permanent this time. Unless a loved one in my family gets Dementia when I will be back to a caring role. If I get Dementia, a very real fear in my future, well I will not be doing the caring.

Please forgive this self indulgent thread. I have been damaged emotionally by six years of caring for mum, witnessing the vile nature of her illness at its worse when in Covid19 shielding. That experience is now something I have to live with for better or worse. But that is no more than many others on this forum are facing. If I knew at the start of my caring journey what I know now, i would still have taken it on.

No regrets mum ever. I loved you when we went to the Memory Clinic, I loved you as we struggled with Dementia and I still love you deeply today and into the future. That is the one thought I need to hang onto in darker moments, to chase away bleak memories. You were my mum, companion, best friend, confidant, etc. You were all of those things and more. The very special person in my life, who unfortunately got Dementia. True but it is up to me to remember your life fully and not just those last years.

I wish everyone on this forum well. Sorry I just needed to express my love for my mum with people who will understand what I am saying. Dementia can cruelly destroy our loved ones, but it can never take away our love for them or memories of better times. In my grief I temporarily misplaced old mum and just had memories of Dementia mum. Now that process is going to be reversed. I realise now i have to fight as hard for those precious memories as I did in my caring role. I close wishing you all well on your difficult road. Always remember you are part of the solution not the problem. Lastly when your road comes to its natural end be gentle on yourself, no guilt, no what ifs, you would have done your best.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
@Whisperer DTP is for anyone and everyone affected by dementia ... and that definitely includes those who may no longer be actively providing care but are still feeling the affects of caring ...
So leave the forums if that is what is good for you right now
However, remember we are here and you are welcome to post any time with whatever is on your mind ... folk here do understand and sympathise
Every good wish ... be kind to yourself
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Dear @Whisperer , yours is not a self-indulgent post - it is a perfectly legitimate feeling and concern. There will always be a place for people who have ended their caring role here because it changes us forever. - there is a forum on here especially for after loss for a very good reason.

I am still caring for OH who is in cognitive decline, but I have lost my mum, so I understand your feelings. I had a period of feeling numb, but I went into it straight away, without any particular grief first and I remember how distressing I found it. Please, if it comforts you to post on here then do so - for as short or as long as you like, but dont stop because you feel it is no longer appropriate. Its not being selfish or demanding or anything else negative.

I think that doing volunteering and charity work is a good idea. I had always thought it would be what I would do when mum passed away, although now its going to be a lot longer! Good luck with whatever you decide to do
xxx
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
Hallo @Whisperer I can well understand what you are going through. I too looked after my mother for 6 years and several years before that as she had a chronic pain condition. It is now 5 years since she died at Christmas 2016 and I think I have been suffering from a kind of PTSD because it is a traumatic experience looking after someone with dementia. I too was very close to my mother and I think sometimes people who haven't "stayed at home" don't understand this.

I am afraid it has taken me a long time to get over her death - the first 2 years were the hardest. I was feeling a bit better in the third year and had some counselling which helped. Then the lockdowns all came and a different kind of depression came over me. I think we have all had to be dealing with that (and for you caring and afterwards during that time) and somehow that has lessened the memories of her illness for me. Also, just the passage of time.

The first year after she passed, I kept myself quite busy - decluttering, etc. and joining various things. Over the years I have been to a couple of classes - exercise and French. I too thought of doing voluntary work but was worried about committing myself. I think you have to get out and meet other people and get involved in activities. The walk and talk bereavement group sounds a good idea. If you contact your local carers' hub (we have a voluntary one in this area) they may have a group for ex-carers. There was one here in Essex called "Beyond Caring." You will probably try several things before you find something right for you. Wishing you all the best.
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
Dear @Whisperer I have no idea now if you will read my post but if you do I understand what you are going through in fact when I saw the title of your post I thought it was one I had done myself recently as the title was so similar. I lost my dear dad in January 2021 and although I did not live with him I lived close by and for the last 5 years of his life I helped to care for him along with carers and a sister whilst he went through his journey of mixed dementia. My mum had already passed in 2016 then it was straight into caring for dad when she passed so no time really to mourn for mum. I still feel pretty numb on a daily basis perhaps not helped by the fact my dad ended up passing so quickly after going into the Care Home in November 2020. In my head I had envisaged dad being there much longer and settling in with the 24/7 care he really needed. I then caught covid from visiting him and missed his funeral. On the anniversary this year of dads passing I still felt awful because I missed his funeral but I felt confused because I didn't breakdown and cry ( I just felt numb). I finally broke down and burst into tears when actually finishing my post on here that evening. I am still fighting hard to find better memories because dads dementia consumed not only dad but my every thinking moment I still do not sleep well and am constantly tired.
I have indeed questioned myself as to whether I should really still be on DTP as I no longer care for someone with dementia but somehow I am still very drawn to the site it really is like I just can't let go. I believe dads dementia really traumatized me but my sibling/sister is no help at all as we no longer speak she is a part of the problem too. DTP has been such a comfort so I will likely stay around for a bit longer in the hope that occasionally I can help someone if only in small way. I understand that for you it may feel its the right time to say goodbye but I'm sure you can always return if you feel the need to. Take Care and I wish you well your mum was so very lucky to have you as her caring son and you to have her as your loving mum.
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
@Whisperer I know something of how you and nearly three years on still shed a tear for dad. Today I had trouble listening to Cry Me A River because dad used keep telling me that he used to ask mum to dance whenever their ballroom venue used to play it. Trouble is I think of both of them.

MaNaAk
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
@Whisperer I know something of how you and nearly three years on still shed a tear for dad. Today I had trouble listening to Cry Me A River because dad used keep telling me that he used to ask mum to dance whenever their ballroom venue used to play it. Trouble is I think of both of them.

MaNaAk
My mum had Matt Monroe singing 'softly' as her coffin came out of the church. I haven't listened to it in a long time because it makes me cry the words were so meaningful. I think of how close my parents were they loved each so much the words just break me up,.
 

Max71

New member
Jan 10, 2019
5
0
For some reason although some songs make me very emotional as I’m in the car for instance, I still play them and I drive with tears running down my cheeks, particularly songs like ‘ I have dreamed’ by Matt Monroe, again a favourite of me and the wife, or ‘Gone too Soon’ by Michael Jackson. The most emotional I get though, is with a song called ‘Goodbye’ by Kenny Rogers. this one is guaranteed to get me going and the words are so lovely and describe how I feel. I used music as an aid for my wife to cope with her anxieties, it did help a bit.