anticipatory grief

[Sarah_S]

I'm struggling with anticipatory grief, even though my dad is still here, and even though we can still talk and laugh and cry together. I'm terrified of what's to come and I'm already grieving the part of my father that is no longer here. We are talking about him, how we need to get a geolocation app installed on his phone, we need to talk to him soonish that he can't drive or travel by train on his own anymore. I come from a close loving family and we support each others, my brothers and mother. I have an incredible husband and amazing friends, my best friend is actually a doctor specialised in rehabilitation & geriatrics whose support is invaluable to all of us.

But the grief is overwhelming. My amazing sweet-natured, hilariously funny and wise father. If there is one word to describe him it's 'love'. He is so much love. Always thinking about others, never wanting to upset others and just always so much love. I feel guilty about not having visited him and my mother enough over the last few years, guilty about living so far away from them. I cannot stop crying and I hate it. I cry at least 20x per day and it is debilitating. The worst is; he's still here. I can still call him, visit him (which I do, as frequently as possible considering I do not live in the same country, although covid sucks). I enjoy my time with him, and do not cry in front of him. I don't want him to be upset, to go through all of this. And I don't want to say goodbye yet, not even a tiny bit. I'm not ready to see him slip away in the fog. Does anybody have advice on how to deal with these overwhelming feelings of sadness?

 

[MartinWL]

I am s practical guy and not very good at emotional stuff but I do know that this is akin to grief as you have alas lost the person you used to love, he is a changed person. Grief heals slowly over time so it will get better.

 

[Duggies-girl]

Hi @Sarah_S You are describing my dad, clever, kind, sweet-natured and so quick witted. Perhaps it would be easier if they were grumpy, miserable, mean and unpleasant. I don't know but watching them decline is truly awful. I can remember my dad struggling to get himself to the bathroom (he still didn't have a wash though) and coming out smiling away and being surprised to see me even though I lived with him for his last year. He never grumbled about anything and I always described him as being 'happy as Larry' which I am very grateful for.

I can't offer any advice other than you will get through it somehow. You obviously can't do too much physically and I think that you are doing everything possible considering you do not live close to your dad. You do have one good thing to be glad about which is that you have a close knit family who are willing to step in and make sure that he is okay. Don't feel guilty about being far away, my son worked abroad for a while and I was so happy for him and I am sure that your dad would feel the same about you, he certainly would not want you to give up your life to look after him.

The grief is another thing altogether but at least you recognise what it is and why you have it. I won't say that it gets easier but if crying helps then cry. I used to spend hours staring into space if I was on my own, I don't think that it helped me but it passed time.

Dad has been gone since February and I miss him everyday especially his wit.

The covid situation is a pig and I will be glad to see the back of it.

Welcome to Talking Point and keep posting as this place probably saved my sanity. There are a lot of really kind and helpful folk on here who will understand what you are going through and you can say whatever you feel here,

 

[Izzy]

Good morning and welcome to the forum @Sarah_S.

I’m sorry to hear that your are feeling so bad. Anticipatory grief is common in people who are caring for someone with dementia. As @Duggies-girl says grief doesn’t get easier but it does change. If you need to cry then cry. It might be an idea to have a chat with your GP about how you’re feeling. I hope it helps to get your feelings out here. There will always be someone here to listen. Keep posting!

 

[Whisperer]

Dear @Sara.S

Anticipatory grief has been my hardest problem. I have found the following “solutions” help me come to terms with it.

1) I remind myself do not waste today crying or getting upset. Best to enjoy mum as she still presents, largely intact even if the memory dents are quite large. Still has her SOH, can do small jobs around the house unaided. Accept what I have in front of me, not waste this precious time in keep wishing what has been lost can be returned to me. It never will.
2) I have always been a fairly stern task master when talking to myself, I now tell my self “this is about mum dummy not me”. Mum lives with the illness. Her ability to cope and enjoy her life as best she can rests on me. If I buckle that support gets hit to. I cannot affordthis emotional self indulgence. As I say fairly tough on myself.
3) Sometimes an event happens and it just cuts through the above thoughts. Then it is time for a few moments in the bathroom or stand in the garden. Just cry and get it out of the system. Do not fight it, try the stiff upper lip, just go with the feeling. Better out than in.
4) Try not to anticipate the future. It does not work for six numbers on the lottery so why should it work on Dementia. There will be problems but perhaps not as many as you think, the order you believe, the intensity you think. The future is an unknown country. Read the map of today, that is often complex enough for normal day to day life.

One last point. You have an extra burden of distance. I suggest in all kindness reading your words the guilt monster is in your heart as well as anticipatory grief. Living to far away, not visited your parents enough, etc. Totally different animal and needs a good thrashing with the guilt monster stick. Your dad has people close up with him, giving loving support but still Dementia will develop. Please accept your being there each day would change little. Not because you are not a talented, loving, caring person, just because of the nature of the illness. Your dad taught you about love. Partly it explains why you are hurting so much. It was a good thing to teach you.

Hope the above helps. Accept the **** feelings will pass, particularly if you understand the logic they arise in your thoughts but you do not need to hold onto them. Just tell yourself this hurts me and I need to let go of it.

best wishes

 

[Sarah_S]

Thank you @MartinWL , @Duggies-girl @Izzy @Whisperer , thank you all for your replies. I just do not know how people cope. Your experiences, how you deal with it and your acknowledgement still help though.
I can't cry when I want/need to cry, as I would literally be crying all day. My husband is super supportive, but I realise I don't want to be a mess all the time, but be a fun wife as well. The world just looks different, darker and I am struggling. I will try to be stricter on myself and not 'allowing' myself to be sad at times. See if that could work. Thanks again for your time reading and responding.

 

[Whisperer]

Dear @Sarah_S

I recognise what you say about the world just looks different, darker...... I sometimes say to myself the colour has gone, things are all black and white. Someone made a suggestion to me and I found it helps. Listen to a favourite piece of music or song, perhaps a poem that has meaning to you. They hold a different type of “colour” in our minds, which can still be tapped into even when life is not great. It can help you change the background mood music of your thoughts. Best wishes.

 

[canary]

I can't cry when I want/need to cry, as I would literally be crying all day.

If that happens, then so be it. Once you let it out it wont last long.
Please dont bottle up your grief as it has to come out. Trying to pretend that all is OK, will just mean that it will come out in other ways - often physical symptoms.

 

[Hazara8]

I'm struggling with anticipatory grief, even though my dad is still here, and even though we can still talk and laugh and cry together. I'm terrified of what's to come and I'm already grieving the part of my father that is no longer here. We are talking about him, how we need to get a geolocation app installed on his phone, we need to talk to him soonish that he can't drive or travel by train on his own anymore. I come from a close loving family and we support each others, my brothers and mother. I have an incredible husband and amazing friends, my best friend is actually a doctor specialised in rehabilitation & geriatrics whose support is invaluable to all of us.

But the grief is overwhelming. My amazing sweet-natured, hilariously funny and wise father. If there is one word to describe him it's 'love'. He is so much love. Always thinking about others, never wanting to upset others and just always so much love. I feel guilty about not having visited him and my mother enough over the last few years, guilty about living so far away from them. I cannot stop crying and I hate it. I cry at least 20x per day and it is debilitating. The worst is; he's still here. I can still call him, visit him (which I do, as frequently as possible considering I do not live in the same country, although covid sucks). I enjoy my time with him, and do not cry in front of him. I don't want him to be upset, to go through all of this. And I don't want to say goodbye yet, not even a tiny bit. I'm not ready to see him slip away in the fog. Does anybody have advice on how to deal with these overwhelming feelings of sadness?

Anticipatory Grief, the Long Goodbye and so on, are familiar labels for the numerous folk engaged in a direct relationship with dementia in a loved one. Grief will challenge one when the moment arrives in which a loved one dies. This has been the case for thousands of years and thus we consider it normal. Yet it never registers as such when it comes? Theories abound and psychological analysis will explain what is taking place. The raw and totally unadorned fact remains that life ends. That truth has been an enormous dilemma for mankind since he emerged onto this wonderful Earth all that time ago. Dementia draws this dilemma closer by nature of way it renders a loved one so vulnerable and subject to a daily association with that enormous question of actual life itself and the inevitable -- but also the anxiety and emotional stress of grief which accompanies that living loved one owing to the " loss" of that person whilst they live. This living anticipation is a very significant part of a relationship with dementia in a loved one and it is extremely challenging.
The ebb and flow of feelings will be unique to yourself and yet are universal in fact. We are all human. The ' anticipatory grief' is invisible and this is often what creates isolation in that grief, because a loved one remains physically present, whilst grieving is generally associated with the physical loss, the aftermath of a funeral and so
on. The challenge therefore is neither to deny nor accept what is taking place, but to move with it's actuality, moment by moment and not to anticipate nor be wishful or fanciful, all of which harbour disappointment and sorrow. All the fine qualities you cite in your father and the very special and indestructible love which exists between a child and a parent despite the passing of time, cannot be harmed by anything, let alone dementia. So treat each day as it comes and whatever that day brings, with equanimity . And when the 'imagery ' of anticipatory grief enters your mind and compels you to cry, then cry. And in the crying let go of just that without any sense of guilt nor inhibition nor suppression. Then see what happens ....

I'm struggling with anticipatory grief, even though my dad is still here, and even though we can still talk and laugh and cry together. I'm terrified of what's to come and I'm already grieving the part of my father that is no longer here. We are talking about him, how we need to get a geolocation app installed on his phone, we need to talk to him soonish that he can't drive or travel by train on his own anymore. I come from a close loving family and we support each others, my brothers and mother. I have an incredible husband and amazing friends, my best friend is actually a doctor specialised in rehabilitation & geriatrics whose support is invaluable to all of us.

But the grief is overwhelming. My amazing sweet-natured, hilariously funny and wise father. If there is one word to describe him it's 'love'. He is so much love. Always thinking about others, never wanting to upset others and just always so much love. I feel guilty about not having visited him and my mother enough over the last few years, guilty about living so far away from them. I cannot stop crying and I hate it. I cry at least 20x per day and it is debilitating. The worst is; he's still here. I can still call him, visit him (which I do, as frequently as possible considering I do not live in the same country, although covid sucks). I enjoy my time with him, and do not cry in front of him. I don't want him to be upset, to go through all of this. And I don't want to say goodbye yet, not even a tiny bit. I'm not ready to see him slip away in the fog. Does anybody have advice on how to deal with these overwhelming feelings of sadness?

 

[LouiseM73]

I'm struggling with anticipatory grief, even though my dad is still here, and even though we can still talk and laugh and cry together. I'm terrified of what's to come and I'm already grieving the part of my father that is no longer here. We are talking about him, how we need to get a geolocation app installed on his phone, we need to talk to him soonish that he can't drive or travel by train on his own anymore. I come from a close loving family and we support each others, my brothers and mother. I have an incredible husband and amazing friends, my best friend is actually a doctor specialised in rehabilitation & geriatrics whose support is invaluable to all of us.

But the grief is overwhelming. My amazing sweet-natured, hilariously funny and wise father. If there is one word to describe him it's 'love'. He is so much love. Always thinking about others, never wanting to upset others and just always so much love. I feel guilty about not having visited him and my mother enough over the last few years, guilty about living so far away from them. I cannot stop crying and I hate it. I cry at least 20x per day and it is debilitating. The worst is; he's still here. I can still call him, visit him (which I do, as frequently as possible considering I do not live in the same country, although covid sucks). I enjoy my time with him, and do not cry in front of him. I don't want him to be upset, to go through all of this. And I don't want to say goodbye yet, not even a tiny bit. I'm not ready to see him slip away in the fog. Does anybody have advice on how to deal with these overwhelming feelings of sadness?

I totally feel and understand what you are going through. I live in Germany and my mother lives alone in a small mobile home residential park. She was finally diagnosed with Dementia a couple of weeks ago, although I have seen her mental and physical decline over the past two years and have tried to convince my doctor to get her tested and diagnosed. Being in Germany, or being 50 miles down the road is the same thing. I am grieving the loss of my "Mum" . She is gone. Our roles have changed and I am deeply deeply sad and am coping very badly with my deep sense of guilt, grief, worry and anxiety. I had no idea what to do and where to reach out, so I did alot of research into Dementia and ALzheimer and looked for tips. I did an Needs Assessment application and have LPA set up already for Health and Finances. ALthough I know I have a base set up, being so far away worries me alot. I am now looking into Care Homes for her for next year, as I know,, deep inside, that she will not improve and I want to her be safe and comfortable for as long as I have her. My bubbly, chatty, funny and elegant Mum has been replaced by a depressed, forgetful, scared shadow of her future self. This is a scary process and I am so grateful for the support and tips I have found here and from age.uk.

 

[Evangeline33]

Hi Sarah
i totally understand how you feel. On Monday both my parents were diagnosed with dementia, unspecified until they have CT scans on 10th. I have been so busy sorting everything out but it all came crashing in around me yesterday. I have decided I will talk to friends/family when I am able to (at the moment I don’t feel able to) and not get upset in front of them.
I guess everyone is different in how they deal with these things and I have no words of wisdom - just keep talking to people and don’t bottle it up.