Anticipatory Grief

[Raggedrobin]

This is a thoughtful thread. My first grief was when my mother, who had been in hospital, said something to me that I knew to be completely wrong and the penny finally dropped for me that she had dementia. Having been through this all with my Dad a few years before, I felt such an overwhelming kind of 'grief' and a sort of loneliness, too, for my mother was the person I would have turned to to discuss a difficult situation like that, in the past. I remember sitting with her and the feeling of grief washing over me liek a wave.

Since then, I have had several close calls with her appearing to rapidly go downhill (she is 98) but then rallying and I have found this on/off will she die/won't she? thing very difficult. But it has been interspersed with times she is more stable and I just spend time with her and plod on.

I moved to a different part of the country to be with her as she clearly needed a close relative around but I have wished her dead a thousand times so I can get my own life back. I often wonder whether the wishing her dead thing will come back to haunt me when she does go.

A part of me hopes, really hopes, that I won't suffer much grief when she dies, that I have grieved already but I'm not sure as she is really so much a part of my life still even in her dementia state. When she has had occasions when it has looked like she is declining, I find I suffer perhaps the most anguish, scared for her and for myself of actually facing death, wanting it to be not a bad death and so on.

As to care homes, I only felt relief when she went in, but also oodles of guilt. I no longer feel that, I know I couldn't possibly care for her at home now so I have stopped beating myself up about that, but for me that was all about guilt rather than grief. Or are they part of each other?

 

[Night-owl]

Ambiguos grief

Hullo,
This is an interesting post for me too. My mother died over two years ago aged 100, and she died in a care home. She had vascular dementia, and heart+kidney failure etc, due to her age really. I felt I had done most of my grieving in the 6 years since her stroke; and her age, the good care home certainly lessened the sadness over her actual death. My GP was very supportive when she died, but I realized then how little he had been supportive during her decline, and I grieved over that. Sorting through her possessions came in 3 parts, as she moved into supported housing, then into the home, and then at her death. That was interesting, but became totally exhausting, and it was 6 months after her death that the exhaustion set in. It's only wearing off now, and this was the form my 'final' grief took I think. I still feel very sad when I remember the last conversation we had before her stroke next a.m., and wonder if I could have prevented it. And the journey in her wheelchair down the corridor of her flat complex when I knew she wouldn't be coming back. Her flat was just behind our house, and I still sometimes peep over the fence at 'her' windows even though she moved out 4 years ago.
I was struck by the post which said that letting go was also an act of love and gratitude for the life well lived; I'm sure that's right and helpful.
The idea that the funeral is needed now was very insightful I think, and poignant. Some kind of personal ceremony might help. I wonder whether Cruse could come up with some ideas about this; or a church, or a secularist society. Maybe some ceremonial burning of a possession our loved one can no longer use, or a scattering of crumbs of their favourite food. There are books of poems, readings, music etc designed for funerals which could give suggestions, and maybe friends of yours could gather together for this. Just thinking aloud here really.
For me, one thing which has helped a lot is the relationship mum had with the young carers at the home who were mostly from the Philippines. They called her Nana, which I didn't at first like. I then realized that they had left their own parents and grandparents thousands of miles away, and they wanted to adopt her as their nana...a great compliment to my mother in fact. They keep her photo up in the lounge, and still refer to her as Nana. So if you get the chance to foster something similar between your loved one and care home staff, then I'd say it can help.
My best to all 'grievers' here
Night-owl

 

[JackieJames]

This is a thoughtful thread. My first grief was when my mother, who had been in hospital, said something to me that I knew to be completely wrong and the penny finally dropped for me that she had dementia. Having been through this all with my Dad a few years before, I felt such an overwhelming kind of 'grief' and a sort of loneliness, too, for my mother was the person I would have turned to to discuss a difficult situation like that, in the past. I remember sitting with her and the feeling of grief washing over me liek a wave.

Since then, I have had several close calls with her appearing to rapidly go downhill (she is 98) but then rallying and I have found this on/off will she die/won't she? thing very difficult. But it has been interspersed with times she is more stable and I just spend time with her and plod on.

I moved to a different part of the country to be with her as she clearly needed a close relative around but I have wished her dead a thousand times so I can get my own life back. I often wonder whether the wishing her dead thing will come back to haunt me when she does go.

A part of me hopes, really hopes, that I won't suffer much grief when she dies, that I have grieved already but I'm not sure as she is really so much a part of my life still even in her dementia state. When she has had occasions when it has looked like she is declining, I find I suffer perhaps the most anguish, scared for her and for myself of actually facing death, wanting it to be not a bad death and so on.

As to care homes, I only felt relief when she went in, but also oodles of guilt. I no longer feel that, I know I couldn't possibly care for her at home now so I have stopped beating myself up about that, but for me that was all about guilt rather than grief. Or are they part of each other?

RaggedRobin: I am newer to this than you are. But, have many of the same feelings. My mother has been seriously ill with CHF (Congestive Heart Failure) for eight years now. It has been very difficult ... numerous hospitalizations, a heart attack, a stroke, falls, nursing homes for short periods of time for occupational and physical therapy AND in the last year and a half, at least, my increasing suspicion that she has dementia as well. She is not formally diagnosed (that is another post and another story entirely), but to what you said:
My mother was my best friend and the one to whom I could always go, and now things are reversed. I miss her and grieve her already, yet she is still here. I pray I am wrong about this dementia thing, and fear I am right at the same time. I feel much guilt about even suspecting dementia as no one else seems to see it but me.
I knew all of my life that I was very afraid of the day I would lose her. I guess I was too close to her, and so the pain is enormous. We mourn them while they live, we pray that they die before too much pain or incapacity sets in, while, in the next breath, pray that they be alive and survive each crisis. And, again, the guilt comes to play. How can I want her to die ... how can I ask her to continue to live and suffer? I feel so helpless in all of this and so very alone. And, yes, I, too hope that I will not grieve too badly when she is gone or at the very least, I hope that I will have the strength to hold it all together.

 

[JackieJames]

Another angle on this: People in the emotional predicament in which we find ourselves are sometimes described as experiencing 'ambiguous loss'. Degrees of the relationship are 'lost' and must be mourned, but the physical person remains alive and loved. Dr Pauline Boss has written helpfully about learning to deal with this. I would recommend her books - 'Ambiguous Loss' and 'Loving Someone Who Has Dementia'.

Absolutely! And Dr Boss has a website as well on this. I look forward to getting this book. I think she also speaks to "Disenfranchised grief', which is grief that is not recognized generally but which we all go through when there is this sort of loss. There does not seem to be much understanding about the grief we do over one who is present/yet absent. So no support systems in place. Thank you.

 

[JackieJames]

Ambiguous Loss in Dementia/Brochure

http://www.alzheimer.ca/~/media/Files/national/Core-lit-brochures/ambiguous_loss_family_e.pdf

 

[CeliaThePoet]

I read this thread with interest. My mother has stage 6 dementia and is in care and quite strongly wishes she were dead. Our relationship has not been close and remains difficult.

Meanwhile, a woman I consider a mother figure (she was my teacher starting at age 14 and we had a continued teacher-student relationship through my adult life) was diagnosed with lung cancer last year, which became bone cancer and then, last week, pneumonia. When she was first diagnosed, I cried and researched (I'm a librarian in a health sciences library) and understood that her prognosis was not great and we'd be lucky if she made it to October. Everyone around her seemed in denial that her decline was inevitable. She had chemo, radiation, nothing helping, and it seemed her oncologist never had a frank discussion with her or her family about what was ahead. Medical interventions prevented her from traveling to her first home, and prevented me from seeing her the last few months--many times I set up a visit only to be cancelled as she was too ill from treatment. I wept often, but felt very lonely; no friends or family felt the crisis I did.

She died last week after a day on Hospice care. By this time, she could no longer speak and was mostly unconscious. I went immediately to see her and was glad I did, but had a hard time realizing this turn was shocking for everyone but me. When she passed last Thursday, everyone went into weeping shock.

I haven't wept; in fact, I feel numb. I'm helping to plan her memorial this Saturday, and giving support to friends and family, but feel quite dislocated from the grief I felt several times this past year.

I'm sure part of this is the circumstances around my friend's decline; another part may well be that I'm "prepared" (or so I think) for my own mother's death but was very unready to lose my friend. I am trying to sort it out--writing helps--but this is the first time I've felt so numb at the passing of someone precious, and I am disturbed at myself.

 

[di65]

Hi all. I have read all these posts with interest. All the people that have been mentioned seem to have had other issues as well as dementia. My husband is (apart from his Alzheimers) is as strong as an ox. On his last doctor's checkup at the Care Home he passed everything with flying colours. No sign of heart problems, diabetes, high blood pressure, not even arthritis! Potentially he could live for another 20 years (he has just turned 67). It is so hard to face this possibility and even though I have had many many bad days, is this grief?
A few of my friends have voiced the following thoughts. You are in limbo, you are not single, not separated or divorced and not widowed. We feel so sorry for you. And they are right - it is a Limbo Land, and not one I enjoy living in. I miss the old him like crazy, but can't tell him this, as he wouldn't understand.

 

[Izzy]

I've come through that di. My husband was diagnosed 14 years ago when he was 71. He does have well controlled diabetes but nothing else. He is physically very strong. I don't know if what I have felt over these years has been grief but certainly loss. Loss of the person I shared so much with. Having said that I am grateful he is still a physical presence in my life and in our home.

 

[KTAnneB]

Thank you

Thank you so much for this post. And to all those who have replied with their stories. Thank you.

 

[Emac]

Care Homes and grief

Thank you Lindy.


What I'm trying to say is that your caring for your mother won't stop because she has to go into a home, it will just be different.
As for dying there, we all die somewhere and better there with people around caring for her than alone in her own home.

Hi Saffie, thanks for the helpful post, and I do get what you mean-my sister and I are trying to make her room is as nice as possible, ensure she is still taken out regularly, continues her trips to hairdressers and coffee shops etc as much as we/she can for as long as we can and as long as we have her. This is what we have to focus on- what we and Mum still have. However- and it's a big however it doesn't take away from the pain of the break up of our family (Dad is still at home) which is how it feels and the loss to her of her home, living with her husband and of course her personal freedom. Perhaps though I feel these losses for her more keenly than she does herself now?
It's just such a big change in our family circumstances. All change involves loss and all losses give rise to grief I guess.
I have no doubt the final loss will be worse though Saffie because it is absolute

 

[Pear trees]

I send my thoughts to all who are grieving in this way for a loved one who has been affected by dementia. I had a difficult relationship with my selfish and distant mother. I think my family are grieving for all the times she refused to be part of our lives over the years and which will never happen now.

 

[Emac]

but I have wished her dead a thousand times so I can get my own life back. I often wonder whether the wishing her dead thing will come back to haunt me when she does go.

Raggedrobin- How brave of you to admit such thoughts. I wouldn't beat yourself up about it. It's only human to find yourself resenting the ongoing stress caused by having a relative with dementia in your life. It's a long period of time to have to put your own life second and deal with someone elses's needs and this depressing disease, which makes it difficult for you to be upbeat and happy yourself when someone you love is so altered and changed and possibly suffering. I am not sure I would believe anyone who said they haven't ever wished it to be over sooner than later- for everyone's sake. I have often thought almost any other terminal illness would be easier to deal with as you are only asked to put your own life second for a shorter period of time. You will absolutely miss your Mum when she is gone, but none of us will miss the stress and strain of having someone in our lives with dementia. xxx

 

[Ann422]

Thank you for this ...

Amazing post. So true. I will save and read whenever I 'forget'. To anyone who ever 'wished their loved one to be gone', I had this thought in a moment of anger myself. The guilt was enormous. Then, a day later, I was crying about my mother. Love trumps. This disease is cruel, baffling and brings us to our knees. Why? How? Why Her/Him? and finally why has this happened to my loved one? Unanswerable questions.
But one truth: we love them. we do or we would not be here on this site. We would not be trying to help them, we would not even be angry. The opposite of anger is not hate. It is indifference.

 

[Gwendy1]

Anticipatory Grief:
Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives. It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.
Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting. The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.
There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! There is no formula for how an anticipated loss will impact us because we all grieve differently.

I am the daughter and my Mom has been ill with congestive heart failure, kidney problems, and more, and finally, early dementia. This has been going on for over 8 years and I thought all the above feelings were abnormal and I felt guilt. Now I know better and I hope that this will be of help to some of you. I firmly believe that the stronger the love, the greater the pain.

Sorry for overly long post.

I could not believe this post when I found it today. It so eloquently and informatively describes how I'm feeling just now. Sometimes I feel so low when I see dad, and have to shake myself as he's still here, just not as he was. When the phone rings, I panic. I remember this feeling so well from mum's last 6 months before she passed away in hospice from cancer/CCF. The anxiety is always there, like an undercurrent. It makes me feel more calm knowing that this feeling, this 'anticipatory grief' is perhaps normal. Thank you.

 

[Selinacroft]

A very interesting post- I feel I've had lots of practice grief along the way, Dad had a burst stomach ulcer resulting in major surgery and a week in HDU when I thought he had been left brain damaged and might die as the surgeon said before the op. Dad recovered and then had a major stroke when he lost his speech and mobility with 3 months in hospital with a slow recovery. Next Dad fell down the stairs breaking his leg and cracking his head open badly so I thought he was gone again lieing lifeless and bleeding at the foot of the stairs but no, after another 3 months in rehab I get my Dad back again and now Dementia is taking him away little by little day by day all over again. At the age of 90 I know he is on borrowed time and has already had more lives than the proverbial cat so I'm not sure how grief will hit me. I think it will feel quite different to losing my mum in her 50s when I was so young.

 

[Marnie63]

Absolutely! And Dr Boss has a website as well on this. I look forward to getting this book. I think she also speaks to "Disenfranchised grief', which is grief that is not recognized generally but which we all go through when there is this sort of loss. There does not seem to be much understanding about the grief we do over one who is present/yet absent. So no support systems in place. Thank you.

I know this is a bit of an old(ish) thread, but I found it by chance and on the basis of the above recommendation ordered 'Loving Someone who has Dementia' by Pauline Boss. Having read 'Contented Dementia', which I wasn't too impressed with, I was a bit sceptical, but as I've really struggled over the past year with the emotional side of things (am caring for my mum at home - and in the summer nearly 'stepped off the precipice' with a near nervous breakdown), I thought I'd give this book a try. I must say, it has really helped me. She goes into great detail about the person being here, but not here, how you can learn to accept this, and about the 'psychological family', which has very much applied to my case. Some of the words could have been written just for me. I have found a lot of comfort in it and it has confirmed some of the things I have been doing and thinking, which has also helped me. I highly recommend it. The focus is totally on the carer coping with the situation. Very helpful.

 

[Georgina63]

I know this is a bit of an old(ish) thread, but I found it by chance and on the basis of the above recommendation ordered 'Loving Someone who has Dementia' by Pauline Boss. Having read 'Contented Dementia', which I wasn't too impressed with, I was a bit sceptical, but as I've really struggled over the past year with the emotional side of things (am caring for my mum at home - and in the summer nearly 'stepped off the precipice' with a near nervous breakdown), I thought I'd give this book a try. I must say, it has really helped me. She goes into great detail about the person being here, but not here, how you can learn to accept this, and about the 'psychological family', which has very much applied to my case. Some of the words could have been written just for me. I have found a lot of comfort in it and it has confirmed some of the things I have been doing and thinking, which has also helped me. I highly recommend it. The focus is totally on the carer coping with the situation. Very helpful.

Thanks for that Marnie, I like the sound of that and have ordered a copy. I hope it might help with mum and dad. Gx

 

[Marnie63]

Thanks for that Marnie, I like the sound of that and have ordered a copy. I hope it might help with mum and dad. Gx

I hope you find it useful too Georgina.

 

[Antiquenotold]

This post has really helped me. I was feeling so many things, mostly to do with how my own life has narrowed to the point where caring seems to be all that I do and yet without it, what else would I do? To think of it as going through a sort of grief for the relationship I used to have with my Mum and a grief for my own lost life helps somehow.

 

[Rageddy Anne]

Hi all. I have read all these posts with interest. All the people that have been mentioned seem to have had other issues as well as dementia. My husband is (apart from his Alzheimers) is as strong as an ox. On his last doctor's checkup at the Care Home he passed everything with flying colours. No sign of heart problems, diabetes, high blood pressure, not even arthritis! Potentially he could live for another 20 years (he has just turned 67). It is so hard to face this possibility and even though I have had many many bad days, is this grief?
A few of my friends have voiced the following thoughts. You are in limbo, you are not single, not separated or divorced and not widowed. We feel so sorry for you. And they are right - it is a Limbo Land, and not one I enjoy living in. I miss the old him like crazy, but can't tell him this, as he wouldn't understand.

I SO identify with this, di. My husband is here, and yet not here, and whatever I do feels half empty because he isn't beside me as he used to be. And yet, when I visit him, he isn't there either.

It's made me a bit unsociable, though I try not to be....If I'm invited out to lunch, for instance, i find it so hard hearing other wives talking about the holidays and things they can do with their husbands...Makes me want to shout" Can't you see I'm actually sitting beside my husband's deathbed, and you talk about holidays!" I'm jealous of my friends who only want to help.It's so wearing, fighting the self pity.