Four years of anticipatory grief

[SarahL]

Hello all,

I wondered if anyone has any thoughts on anticipatory grief please.

Bit of background - Mum has been in care for four years and previously to that was ill for a long time undiagnosed. She was finally diagnosed in 2012 which is nearly 7 years ago now. I have cared for her single- handedly and found this whole sad journey very painful, particularly given that I had a childhood being separated from her by my father.

Since Mum has been in care there have been three hospital admissions over the years; the most recent one was for 5 days for extreme dehydration and an infection and I thought she was going to die. Prior to going in she had been sleepy, non-verbal, not eating and looked so ill that I went through intense feelings of loss. Since she came out I feel so exhausted with it all that I feel like I need to step back. I currently visit the CH 3-4 times a week.

My dilemma however is feeling guilty for not going in, combined with sadness at seeing her decline but not wanting to keep suffering the ongoing loss and I feel selfish for not wanting to be on this journey any more. I also feel like I have had a shift in my grieving as her disease is progressing and I am becoming more accepting of her death. Does anyone know what I mean with this - sorry if I haven't explained myself very clearly here, it's confusing to me and any thoughts would be gratefully received.

Thank you. :/

 

[emmamac]

Hello all,

I wondered if anyone has any thoughts on anticipatory grief please.

Bit of background - Mum has been in care for four years and previously to that was ill for a long time undiagnosed. She was finally diagnosed in 2012 which is nearly 7 years ago now. I have cared for her single- handedly and found this whole sad journey very painful, particularly given that I had a childhood being separated from her by my father.

Since Mum has been in care there have been three hospital admissions over the years; the most recent one was for 5 days for extreme dehydration and an infection and I thought she was going to die. Prior to going in she had been sleepy, non-verbal, not eating and looked so ill that I went through intense feelings of loss. Since she came out I feel so exhausted with it all that I feel like I need to step back. I currently visit the CH 3-4 times a week.

My dilemma however is feeling guilty for not going in, combined with sadness at seeing her decline but not wanting to keep suffering the ongoing loss and I feel selfish for not wanting to be on this journey any more. I also feel like I have had a shift in my grieving as her disease is progressing and I am becoming more accepting of her death. Does anyone know what I mean with this - sorry if I haven't explained myself very clearly here, it's confusing to me and any thoughts would be gratefully received.

Thank you. :/

Hi Sarah, the trouble with dementia is we start a slow grieving whilst our loved ones are alive. I can totally relate to how you feel - I am an only child and have been my mums carer for two years alongside a full time job, 11 year old son and two adult daughters. I too feel exhausted and hate the journey we are on. I feel anxious and stressed most of the time and at times fantasise about a time where this is no longer part of my daily life. I don’t know the answer. I know we need to lose the guilt and put on our own oxygen masks before helping others put on theirs, but that’s easier said than done. I mostly vere between guilt at not going or resentment at going every day.

I know I haven’t offered much advice but do know that what you feel is very common

Sending love x

 

[karaokePete]

Hello @SarahL, I too understand what you are saying and agree that we all have a rough ride when it comes to the emotions of having a loved one with dementia. You are right to share here as it may help to interact with the other forum members

I would say that if the struggle gets too great you shouldn't shy away from speaking to your GP as I'm sure they may be able to help with arranging counselling etc.

There is a Society Factsheet that may help, just click the PDF line of the following link
Carers: Looking after yourself (523)
PDF printable version

If you don't want to use the GP but do want to talk to a person the following help line may be of benefit, especially when you consider that it can be common to have a lower mood at this time of year
Samaritans: Call 116 123 or email jo@samaritans.org

Open 24 hours, 365 days a year

 

[Witzend]

Yes, I can relate absolutely. By the time my mother no longer knew me or my siblings, there was no possibility of any conversation and her quality of life was practically zero, I did come to wish it would all be over, for her own sake as much as anything, largely because of the appalling loss of dignity (incontinence) which her former self would have been so horrified by.

By that stage I no longer felt guilty for sometimes visiting her in the care home less often, since she was unaware anyway, didn't respond to anything - and I knew she was very well looked after by the staff.
But my mother did have dementia for a very long time, at least 15 years.

Although of course there was sadness when she finally died at 97 - when she'd been in a most pitiful state for quite a while - our main emotion was to be glad that she was finally released from such a pitiful existence.

 

[KathrynAnne]

I really understand what you are saying. My Mum was diagnosed over 8 years ago and has declined a lot over the last 12 months. It is definitely like losing her bit by bit. She is in intermediate care at the moment but I am seriously considering making this permanent as I don’t know how I will cope if she comes back home. She often doesn’t know who I am when I go to visit and sometimes I heave a huge sigh of relief when I walk out of the care home. I really hope that my lasting memories of my Mum will be of the good times and not just the journey through this terrible disease.

 

[SarahL]

Thank you for your comments, thoughts and feelings. It is an awful time for our loved ones and for ourselves too. I completely understand your sighs of relief KathrynAnne as I have these too; Emmamac, you are so right, the grieving does start the moment our relative becomes ill, whether we are conscious of it or not, and it takes its toll after the years on the emotions. I remember howling one night after many years realising that my Mum was just not going to 'come back'. I found it hard acknowledging that she looked like herself (and very young for that matter) but just wasn't the same person. Witzend I am glad your Mother was cared for well at her care home and I suppose that's all we can hope for, those of us whose relative is in care. For those coping at home it is extremely exhausting. I remember having a fear of doom after my Mum was sectioned in case they discharged her (because she used to appear so plausible, bless her) although I was conflicted too seeing her in an assessment ward before she went into care. My mental health has been to the brink but thankfully I have clawed my way back and now I just want a release, and I want that for my Mum too. All the best to everyone on here, I couldn't have got through the years without this site.

 

[SarahL]

Hi Sarah, the trouble with dementia is we start a slow grieving whilst our loved ones are alive. I can totally relate to how you feel - I am an only child and have been my mums carer for two years alongside a full time job, 11 year old son and two adult daughters. I too feel exhausted and hate the journey we are on. I feel anxious and stressed most of the time and at times fantasise about a time where this is no longer part of my daily life. I don’t know the answer. I know we need to lose the guilt and put on our own oxygen masks before helping others put on theirs, but that’s easier said than done. I mostly vere between guilt at not going or resentment at going every day.

I know I haven’t offered much advice but do know that what you feel is very common

Sending love x

Thank you Emmamac and I have replied (see above).

 

[SarahL]

I really understand what you are saying. My Mum was diagnosed over 8 years ago and has declined a lot over the last 12 months. It is definitely like losing her bit by bit. She is in intermediate care at the moment but I am seriously considering making this permanent as I don’t know how I will cope if she comes back home. She often doesn’t know who I am when I go to visit and sometimes I heave a huge sigh of relief when I walk out of the care home. I really hope that my lasting memories of my Mum will be of the good times and not just the journey through this terrible disease.

Thank you KathrynAnne and I have replied, please see above.

 

[SarahL]

Yes, I can relate absolutely. By the time my mother no longer knew me or my siblings, there was no possibility of any conversation and her quality of life was practically zero, I did come to wish it would all be over, for her own sake as much as anything, largely because of the appalling loss of dignity (incontinence) which her former self would have been so horrified by.

By that stage I no longer felt guilty for sometimes visiting her in the care home less often, since she was unaware anyway, didn't respond to anything - and I knew she was very well looked after by the staff.
But my mother did have dementia for a very long time, at least 15 years.

Although of course there was sadness when she finally died at 97 - when she'd been in a most pitiful state for quite a while - our main emotion was to be glad that she was finally released from such a pitiful existence.

Thank you Witzend and I have replied, please see above.