My siblings and I just spent a lot of time trying to help my 88 year old mom move up north into my 55+ neighborhood (because I’m the sibling that is settled) only for her winding up not moving (at least now she is working on purging and getting her house ready for the market when the time comes). But we will still have to deal with listening to her constant worries about the house - the reason we wanted her to downsize and move where much of the work is facilitated by the HOA. I asked my husband his perspective when we were in our sibling phone calls and he said she needs to let you kids lead this and that means her giving up control and she’s not going to give up control. So here we are. We wait for what’s next. But I’ve told my sister and her husband that they do not have to feel obligated to let my mom’s choices interfere with their retirement choices. I felt a little of that reading about your parents refusing social services because of pride. That is my mom. When we suggested moving to an independent living to end-of-life facility she completely balked at that idea. At this point, though, I will do what I can from afar (and I’m sure there will be travel at some point), but I will carry no guilt with me. Just helpfulness where I can help, within the constraints she has set.
PS hubby and I left a town we lived in for 37 years, an hour from where we are now. We both still miss it, dearly. But we are closer to the kids and nearer them and civilization as we get older (it was a rural mountain town). Watching both my mother and MIL (in different ways) struggle in these later years was a big impetus for the move. We did it for the kids. And we love being closer to them. (I’m about to head off to watch my 4-yr old granddaughter “play” soccer.) Helping them, now, with their children as part of their village and hoping it makes things easier for them as we age.
Thank you so much for sharing this Chris. It speaks to me on many levels.
We live in London and there are so many opportunities for my children here, to move away would compromise that, put extra stress on my husband’s job and mean starting all over again. My parents understand this but I always get a pang of guilt when I hear other people say they have moved back to live near their parents. Having said that my parents don’t want to move either. Ultimately we need to do what’s right for our kids.
I love your attitude . No guilt, just helpfulness where I can. This is a much more sustainable approach than going all in or feeling low with worry and guilt.
I think society needs to talk about elder care more, I mean really talk and prepare. Not just practically (although that is helpful) but by sharing our stories and experiences to help support and inform each other through this challenging time.
Enjoy your ‘soccer’ practice… what a thing of joy, your precious grandbabies… drink them in!
I really thank you for this article. Writing my response actually helped me reaffirm
How I feel about all of this. And yes, we need to do what’s right for our kids. Perfectly said. And yes to sharing our stories. Thank you for living into that with this post.
It is isn’t it Rachael and the strange thing is, despite a lifetime in healthcare and a very common sense approach to medical things, I didn’t see this coming and I never feel I am doing enough or getting it right. I suppose professional knowledge is one thing, personal feelings are another.
Thank you for this timely article. I cared for my mother in her last years, experiencing the ups and downs you described. She had a sweet, peaceful passing in her sleep. With me sleeping across the room from her. Her lack of breathing woke me. It was too quiet. She lived 101 years.
Now I am caring for my eldest sister. We have good days together, preparing our meals, playing music together, or more often, me playing for her, sharing videos from my favorite Substack people. But then there are the days when her brain doesn't get enough oxygen and she "knows" that I am trying to hurt her. It's heartbreaking, knowing that she doesn't trust me. She has so many fears and there isn't much I can do about it. She has always been a sweet gentle person who loves animals and has cheerfully put up with the disabling effects of a childhood disease. She has had a good life with the different adventures it brings. We were surprised when she got her pilots license. That is more than anyone else in the family is brave enough to do.
But her brain is letting her down, making her think she is a bad person and her friends are trying to hurt her. I want her to be comfortable with her last days, but I can't control that.
So, thank you for reminding me of all the ups and downs. We are not the only ones on this journey.
Oh Marianne, you have given others so much care, I hope you have people around caring for you.
101 years old is amazing and to have such dedication to your mother in law really is a beautiful thing.
Sounds like you have some simple but beautiful times with your sister but some really distressing times… I can imagine it must weigh heavy in you. I love my sisters and seeing them distressed is heartbreaking. We just want to protect the ones we love don’t we but it’s not always that straightforward.
There are definitely some more precious memories to be made (and some we would rather forget). It’s lovely that we can all connect like this and know we are not alone.
Just like to add the need to take care of yourself, Rebecca, if you possibly can, in this difficult phase of your life. It’s very hard to balance all the needs of those around us. Sometimes difficult decisions have to be made. It was perhaps easier for me as a lone parent working countless hours to try to make ends meet, to decide what I had to prioritise. However, no one is immune to the strains and difficult decisions involved in caring. None of us are Superwoman (or Superman) xx
Thanks Maureen… I am trying to take care of myself (and my kids and my perimenopause etc). Writing this piece has really helped as have all of the supportive comments. I love this place and I’m so glad you are here. Xx
Thanks Maureen… I am trying to take care of myself (and my kids and my perimenopause etc). Writing this piece has really helped as have all of the supportive comments. I love this place and I’m so glad you are here. Xx
Hello Rebecca hun, This is beautifully written. Thank you :o)
"There is grief involved in caring. Witnessing a loved one lose aspects of their life, their independence and their autonomy is painful and unpredictable. There is also frustration and at times resentment. There I said it and may God strike me down, but I am sure I am not alone."
The frustration is also because we want to be better carers and we don't like nagging. :o) We love those who we care for, we just want their lives to be better. It's a form of love. <3
Some of Mums carers were (and still are) amazing and we are so grateful. Caring is an art and a skill. Got to be honest some of them we wouldn’t let near her… especially the guy who wreaked of cigarettes!
I think part of all of our family’s frustration is that we can’t turn back time… we had some of the best times and I’m so grateful for them but wish so much that we could live that life again. 😔
Thank you for airing your story, Rebecca. Caring is so complex and every situation is different, but from the conversations I've had, the feelings seem to be remarkably consistent. Love. Anxiety. Overwhelming feelings of responsibility. Resentment, with attending guilt. Sorrow. Grief at the lives and freedoms we've lost.
I've been living them all since my life changed overnight 14 months ago, when I took the immediate decision to move in as my elderly parents' carer-companion. When you feel as though you have no choice, I found owning the decision and making it my choice, and actively accepting the situation, was the only way for me to stay healthy. I'm committed to building a life here, and not just an existence that's about obligation.
This is so helpful Caroline.. thank you so much for sharing this.
My sister lives part of the week with my parents and in many ways I think she is doing what you are doing.. making the conscious decision to own the situation rather than being passively swept along with it. I had never really thought about it like that before.
Thank you again for sharing… such insight and wisdom in these comments… I think they are better than the post itself!
"Seeing my mum cry because she is lonely makes me want to give up my life in London and rush to be permanently by her side – but my daughter is at school here, my husband works here, I have spent two decades building my life here. I’m torn.” This resonates. I had the same hard thoughts and concerns about my mother as she aged and lived six hours from me. She needed me to be there, but I also had obligations and a life where I was living. She refused to move when she could have, and will forever believe should have.
Also, I have suffered from the strain such decisions regarding the care of elderly parents places on siblings. My siblings and I have never recovered from those differences. We are estranged even though my mother has been gone for six years, which is a heartbreak for me, and one I wish could be healed.
Yes, giving care is complex. So very complex. There simply are no easy simple answers. I wish there were.
Also, thank you for writing about mourning the life you once shared. That is the hardest part, in some ways.
Thank you so much Sally and thank you for acknowledging the grief that exists even when still have our parents, the mourning for the life lost and the guilt around being needed in two places at once.
I’m really taken by your story about your siblings. I don’t know how siblings manage to care without friction… it brings up so much within a family, tension and disagreements are inevitable.
I’m thinking carefully about what you said and I’m even more determined to make sure that doesn’t happen to us. I hope you find resolution to this estrangement soon, I really do.
Thinking of you Sally and sending you best wishes. 💐
Your dad Rebecca sounds very like my Grandad was. Never stopped. A machine. When my gran had her stroke and came to live with me he managed to starve himself to death in hospital too stubborn to live any other way but I don't blame him. He was a man who stepped up. A father figure to his grandchildren whose father's were lacking. And a proper Grandad to his great grandchildren. A provider. He died in 2009 but I miss him every day and thank him for his example.
My first grandchild was born in 2009 and 6 weeks later my gran had her stroke which resulted in her living with me until I had to put her in a home when my son had an accident age 18....
I would be interested in speaking to you about caring any time!
Thanks for your instalment it has made me cry once again. It's very hard.
Oh my dad sounds just like your grandad Zena. A man full of love, who can also be stubborn as a mule but a hard worker who just wanted to be a good family man.
You certainly have years of caring experience under your belt… I am mentally noting that I will need to pick your brains as I travel further down this road. There is no blueprint in there? It’s like the satnav has been turned off and we just have to trust in each day (which is horrendous for my anxiety).
I hope you feel better after crying. I have cried a lot recently and it always makes me feel better, afterwards at least. Really lovely to have you here at This Woman’s Work… this is why I write, for moments like this. Thanks for being part of our lovely community.
Ed Davey is very pro carers due to his own experience but I think we are in a place now where individuals are only valued for their ‘work’ contributions to society. Those who cannot ‘offer’ work such as the sick, the vulnerable, the elderly, those with care responsibilities etc are not a priority, they are not adding to the profit of shareholders and increasingly it feels that it’s all about the money … and some people can never have enough such as the odious billionaires that now seem to have a hand in politics. I’m fighting back. Care matters. Corporations don’t.
Ed Davey is a fantastic champion for unpaid carers, but although he regularly brings issues up in parliament we are still pretty much ignored. The country is broken, and still under continuous attack by a variety of bad actors, it will take years to fix, and family carers are at the bottom of the mountainous pile of issues. Unpaid carers actually contribute an estimated £184 billion (yes, billion) to the economy annually, so we do actually have an effect on the state of things. If we could all walk away from our responsibilities at the same time the system would collapse. But we won't, and they know we won't. Social care is a can each government is happy to kick down the road, none of them want to touch it, but it's only going to get worse. Ultimately it will go the way of an insurance, but what that will look like will be dependant on who is in the driving seat and who is pulling their strings. It is a ticking time bomb, and it's getting ever bigger with every passing year, there are generations coming up who won't have the property or savings for social services to raid to fund care fees, and no relatives in the financial position to give up their lives to care for them.
I haven't read your essay yet (I came straight to the comments as you suggested in your note), but I will read it later on this afternoon, and no doubt add another comment. I'm pleased you're talking about this, we need as many voices as possible speaking out.
Absolutely agree Wendy… who cares for the carers? The real people who are holding the country together? Surviving on a pittance, begging for support, over looked and undervalued time and time again. Held to ransom and bound to their loved ones as the state watches on impotently. I hear you. 😔
Thanks Mary. All carers walk a long, hard road. We don’t live in a society that is set up to care. I fear caring will get harder as we become further entrenched in the politics of profit and power and not care and compassion. Who cares? Certainly not most people in power!
I agree with this. Although I have to say Ed Davey spoke a lot about carers in families and has spoken a lot from experience and had more of a vision to change things.
I think Keir Starmer has tried to talk about caring with reference to his own family but has ended up sounding like a broken record (I'm sure that phrase is out of date!).
This resonates so much for me. 10 days ago my 95 year old mum fell and broke her pelvis. She is currently still in hospital but should be going home early next week (with carers in every day). My dad (92) has enjoyed the time at home without the responsibility of having to look after her. Neither of them was well before this episode and my dad was getting very tired doing all the cooking etc while trying to stop my stubborn and impulsive mum from making herself ill by overdoing things.
I so get this too. I have friends who lost their parents years ago and I often feel I don’t have the right to talk about my anxiety or stress with them as they would give anything to have their parents still with them. My friends are really supportive though (and very fond of my parents) but I am still conscious of their losses. It’s hard.
I’d bet that most would be doubly appreciative to support you, Rebecca: it’s an opportunity to remember what *we* had too, as well as to care for someone we care about in the here & now. I certainly do (& just did 🙏).
That’s a really lovely thought DC, I didn’t think about it that way but I think you are right. My friends are super supportive and I worry that I lean on them too much but maybe supporting me is a comfort to them too. Thanks for this… it makes a lot of sense. 😌
Gosh, I am feeling this Helen. It has been hard on my dad caring for our mum (even with the help of us and carers).
It is difficult to stop our parents from overdoing it. You can’t watch them 24 hours a day and at times we have found dad precariously balancing up a ladder or mum over reaching for something endangering her fragile hip. It’s frustrating. For us and for them.
I hope it goes well when your mum comes home… it’s all stages to navigate (often without a compass).
Sadly I went through the same sort of thing with my parents-in-law a couple of years ago so I have some knowledge of how things work…I wouldn’t recommend being responsible for four 90+ year olds. I feel guilty for finding it hard going when all my contemporaries have already lost their parents.
Very relatable as I have flown to stay with my mom who has “light” dementia which means she can still add up her rummikub scores faster than I ever could and win too! But she’ll repeat the same question again and again and swear she hasn’t played rummikub for years- although we just played yesterday…
Oh Audrey, that must be sad for you and anxiety provoking. Can you stay long term? I feel such guilt at not being able to uproot myself but I just can’t.
I love the fact you can still play rummikub together… these little things become really important and significant when the world starts to become smaller. You sound like you are doing a great job.
I understand so well. Went through this with my dad a few years ago. He was in poor health and wrote off the lumps on his neck as lymph nodes he had to have drained previously. He went to have them drained and they were actually an aggressive type of cancer and he was gone in 4 months. He went from just being sick to gone so fast, yet his biggest concern was that he lost his beautiful silver hair. My 90 year old mom has blossomed since he passed, although she's slowing down. I swear she'll outlive us all. My heart is with you as you navigate all of this. It's so hard. ❤️
Ah I’m sorry to hear about your dad. Such a short time from diagnosis to his passing, what a shock. I’m glad your mum is still going strong, she sounds amazing.
Thank you so much for your kind words ..’navigate’ is a good word, like a ship without a compass, we keep hitting waves 🌊 but we keep going. ❤️
And the only answers are in the stars, from which we came and to which we might someday return ✨
My heart goes out to each of you, and other commenters too 🙏
It’s a curious feeling that I only partially appreciated at the time, but the relief we (5 siblings of 5 total marriages) had at the end of each of their relatively brief battles against cancer meant that the pain of their losses was reduced, and also that the vast majority of our memories are of them at their best & most ridiculous ❤️
As my partner’s parents and their siblings have hit old age, I’m seeing what you describe so poignantly in slo mo & arm’s length (for now) — and I’m again regularly reminded of what my parents missed.
It’s complicated 🙀
But love & life are too, so please be kind to yourself as you work through all this.
Anticipatory grief is completely draining, it's a grief that never seems to progress, but instead just hangs around your shoulders like a heavy cloak. I'm having a slightly different experience to yours, my nother has dementia, and I'm an only child, so the only person I have to argue with and disagree with is myself. But we have quite a few similarities. Half of the last 7 years of my caring journey have been spent trying to persuade my mum to do things that will make life easier and more pleasant for the both of us, and her care, but she has fought me every step of the way, and now we are both paying the price for her pride and her reluctance to face reality, I have both sympathy and frustration on that score. I've also spent most of those same years feeling immensely resentful. God hasn't struck me down, yet, but I have been left to stew in that pot of resentment. I think it's important to recognise how this journey makes us feel, all of those emotions are going to bubble right up to the surface, and trying to suppress them will do nobody any good, but when we've felt them we have to learn to let them go. They will return, probably many times over, but each time we should acknowledge how we feel then let it go again.
If I can I would like to recommend a book called Travellers to Unimaginable Lands by Dasha Kiper. It's primarily written about/for carers of dementia, but it addresses the emotions like guilt, frustration and resentment that most carers go through. Carers spend much of their time feeling like they are invisible and under appreciated, this book helps them feel seen.
This is really interesting Wendy… I think grief is so much more than just the death of a person… it’s not always easy to articulate but I think grief forms a huge part of all of our lives.. grieving what we have lost, what we never had, what we will never get the chance to do or be or feel. I’m adding anticipatory grief to the list.
I did an online afternoon carer's course about it a couple of years ago. It applies to a situation where you start grieving while the person is still alive, and you are losing them slowly. It's talked about a lot in dementia circles as the stages of decline are often very prominent, happening over a long period of time, and it's like you are losing them piece by piece. It helps to understand and recognise it as grief as it makes sense of all the different emotions you can go through while the person is still alive.
I know a little about this, my mama passed weeks before her 60th birthday and before that she was in bad health. My dad lived a few more years in declining health and getting mad at the thought of the growing list of things he couldn’t do. It’s really sad and scary dealing with this.
I’m sorry for your losses Julia.. it’s a lot to witness and process.
Nobody wants to feel restricted by aging but for some it is unavoidable. Sad and scary are good descriptions.. thanks for sharing, really appreciate your thoughts.
That's why I wanted to comment on what you'd written. I always believed I was invincible, strong and never gave up, but my body told me otherwise. I am very strong, resilient and determined, but I know I need to take care of myself now which I'd never really done in the past. The more we share our experiences, the more we can support each other.
Absolutely Karen… that’s why I write, to support and share and that’s what This Woman’s Work is all about… building a space to do that. I no longer work in the NHS, in a caring profession but this is part of my new work now. But I still need to practice self compassion… it doesn’t come naturally but it is a big part of my midlife rebirth. Thank you for sharing and supporting.
My siblings and I just spent a lot of time trying to help my 88 year old mom move up north into my 55+ neighborhood (because I’m the sibling that is settled) only for her winding up not moving (at least now she is working on purging and getting her house ready for the market when the time comes). But we will still have to deal with listening to her constant worries about the house - the reason we wanted her to downsize and move where much of the work is facilitated by the HOA. I asked my husband his perspective when we were in our sibling phone calls and he said she needs to let you kids lead this and that means her giving up control and she’s not going to give up control. So here we are. We wait for what’s next. But I’ve told my sister and her husband that they do not have to feel obligated to let my mom’s choices interfere with their retirement choices. I felt a little of that reading about your parents refusing social services because of pride. That is my mom. When we suggested moving to an independent living to end-of-life facility she completely balked at that idea. At this point, though, I will do what I can from afar (and I’m sure there will be travel at some point), but I will carry no guilt with me. Just helpfulness where I can help, within the constraints she has set.
PS hubby and I left a town we lived in for 37 years, an hour from where we are now. We both still miss it, dearly. But we are closer to the kids and nearer them and civilization as we get older (it was a rural mountain town). Watching both my mother and MIL (in different ways) struggle in these later years was a big impetus for the move. We did it for the kids. And we love being closer to them. (I’m about to head off to watch my 4-yr old granddaughter “play” soccer.) Helping them, now, with their children as part of their village and hoping it makes things easier for them as we age.
Thank you so much for sharing this Chris. It speaks to me on many levels.
We live in London and there are so many opportunities for my children here, to move away would compromise that, put extra stress on my husband’s job and mean starting all over again. My parents understand this but I always get a pang of guilt when I hear other people say they have moved back to live near their parents. Having said that my parents don’t want to move either. Ultimately we need to do what’s right for our kids.
I love your attitude . No guilt, just helpfulness where I can. This is a much more sustainable approach than going all in or feeling low with worry and guilt.
I think society needs to talk about elder care more, I mean really talk and prepare. Not just practically (although that is helpful) but by sharing our stories and experiences to help support and inform each other through this challenging time.
Enjoy your ‘soccer’ practice… what a thing of joy, your precious grandbabies… drink them in!
I really thank you for this article. Writing my response actually helped me reaffirm
How I feel about all of this. And yes, we need to do what’s right for our kids. Perfectly said. And yes to sharing our stories. Thank you for living into that with this post.
Yes, feeling all of this. It is very complex
It is isn’t it Rachael and the strange thing is, despite a lifetime in healthcare and a very common sense approach to medical things, I didn’t see this coming and I never feel I am doing enough or getting it right. I suppose professional knowledge is one thing, personal feelings are another.
Thank you for this timely article. I cared for my mother in her last years, experiencing the ups and downs you described. She had a sweet, peaceful passing in her sleep. With me sleeping across the room from her. Her lack of breathing woke me. It was too quiet. She lived 101 years.
Now I am caring for my eldest sister. We have good days together, preparing our meals, playing music together, or more often, me playing for her, sharing videos from my favorite Substack people. But then there are the days when her brain doesn't get enough oxygen and she "knows" that I am trying to hurt her. It's heartbreaking, knowing that she doesn't trust me. She has so many fears and there isn't much I can do about it. She has always been a sweet gentle person who loves animals and has cheerfully put up with the disabling effects of a childhood disease. She has had a good life with the different adventures it brings. We were surprised when she got her pilots license. That is more than anyone else in the family is brave enough to do.
But her brain is letting her down, making her think she is a bad person and her friends are trying to hurt her. I want her to be comfortable with her last days, but I can't control that.
So, thank you for reminding me of all the ups and downs. We are not the only ones on this journey.
Oh Marianne, you have given others so much care, I hope you have people around caring for you.
101 years old is amazing and to have such dedication to your mother in law really is a beautiful thing.
Sounds like you have some simple but beautiful times with your sister but some really distressing times… I can imagine it must weigh heavy in you. I love my sisters and seeing them distressed is heartbreaking. We just want to protect the ones we love don’t we but it’s not always that straightforward.
There are definitely some more precious memories to be made (and some we would rather forget). It’s lovely that we can all connect like this and know we are not alone.
Just like to add the need to take care of yourself, Rebecca, if you possibly can, in this difficult phase of your life. It’s very hard to balance all the needs of those around us. Sometimes difficult decisions have to be made. It was perhaps easier for me as a lone parent working countless hours to try to make ends meet, to decide what I had to prioritise. However, no one is immune to the strains and difficult decisions involved in caring. None of us are Superwoman (or Superman) xx
Thanks Maureen… I am trying to take care of myself (and my kids and my perimenopause etc). Writing this piece has really helped as have all of the supportive comments. I love this place and I’m so glad you are here. Xx
Delighted to be here, Rebecca xx
Thanks Maureen… I am trying to take care of myself (and my kids and my perimenopause etc). Writing this piece has really helped as have all of the supportive comments. I love this place and I’m so glad you are here. Xx
Hello Rebecca hun, This is beautifully written. Thank you :o)
"There is grief involved in caring. Witnessing a loved one lose aspects of their life, their independence and their autonomy is painful and unpredictable. There is also frustration and at times resentment. There I said it and may God strike me down, but I am sure I am not alone."
The frustration is also because we want to be better carers and we don't like nagging. :o) We love those who we care for, we just want their lives to be better. It's a form of love. <3
Some of Mums carers were (and still are) amazing and we are so grateful. Caring is an art and a skill. Got to be honest some of them we wouldn’t let near her… especially the guy who wreaked of cigarettes!
I think part of all of our family’s frustration is that we can’t turn back time… we had some of the best times and I’m so grateful for them but wish so much that we could live that life again. 😔
Yeah, the old ‘if only’ train. *Sigh
All you can do is focus on the here and now. Focus on the days you have, not the days past? There will be plenty of time for that later. <3
❤️
Yes, definitely a grief process. I cried more during my mother's last weeks than when she died. I lost her back then. Now she is at peace.
So sorry for your loss Marianne. <3
Ah I’m so sorry for the loss of your mum Marianne. Grief is a process isn’t it that often starts before we actually lose that person.
Thank you for sharing this, I think others will feel seen and understood by your words… I certainly do.
Yeah, it is tough and I've been thru it with my mother and spouse's parents. Life definitely never becomes easier. Hang in there bud
Thanks Dude (my new favourite expression) ☺️
🤙
Thank you for airing your story, Rebecca. Caring is so complex and every situation is different, but from the conversations I've had, the feelings seem to be remarkably consistent. Love. Anxiety. Overwhelming feelings of responsibility. Resentment, with attending guilt. Sorrow. Grief at the lives and freedoms we've lost.
I've been living them all since my life changed overnight 14 months ago, when I took the immediate decision to move in as my elderly parents' carer-companion. When you feel as though you have no choice, I found owning the decision and making it my choice, and actively accepting the situation, was the only way for me to stay healthy. I'm committed to building a life here, and not just an existence that's about obligation.
This is so helpful Caroline.. thank you so much for sharing this.
My sister lives part of the week with my parents and in many ways I think she is doing what you are doing.. making the conscious decision to own the situation rather than being passively swept along with it. I had never really thought about it like that before.
Thank you again for sharing… such insight and wisdom in these comments… I think they are better than the post itself!
"Seeing my mum cry because she is lonely makes me want to give up my life in London and rush to be permanently by her side – but my daughter is at school here, my husband works here, I have spent two decades building my life here. I’m torn.” This resonates. I had the same hard thoughts and concerns about my mother as she aged and lived six hours from me. She needed me to be there, but I also had obligations and a life where I was living. She refused to move when she could have, and will forever believe should have.
Also, I have suffered from the strain such decisions regarding the care of elderly parents places on siblings. My siblings and I have never recovered from those differences. We are estranged even though my mother has been gone for six years, which is a heartbreak for me, and one I wish could be healed.
Yes, giving care is complex. So very complex. There simply are no easy simple answers. I wish there were.
Also, thank you for writing about mourning the life you once shared. That is the hardest part, in some ways.
Thinking of you, and of your parents.
Thank you so much Sally and thank you for acknowledging the grief that exists even when still have our parents, the mourning for the life lost and the guilt around being needed in two places at once.
I’m really taken by your story about your siblings. I don’t know how siblings manage to care without friction… it brings up so much within a family, tension and disagreements are inevitable.
I’m thinking carefully about what you said and I’m even more determined to make sure that doesn’t happen to us. I hope you find resolution to this estrangement soon, I really do.
Thinking of you Sally and sending you best wishes. 💐
Your dad Rebecca sounds very like my Grandad was. Never stopped. A machine. When my gran had her stroke and came to live with me he managed to starve himself to death in hospital too stubborn to live any other way but I don't blame him. He was a man who stepped up. A father figure to his grandchildren whose father's were lacking. And a proper Grandad to his great grandchildren. A provider. He died in 2009 but I miss him every day and thank him for his example.
My first grandchild was born in 2009 and 6 weeks later my gran had her stroke which resulted in her living with me until I had to put her in a home when my son had an accident age 18....
I would be interested in speaking to you about caring any time!
Thanks for your instalment it has made me cry once again. It's very hard.
Oh my dad sounds just like your grandad Zena. A man full of love, who can also be stubborn as a mule but a hard worker who just wanted to be a good family man.
You certainly have years of caring experience under your belt… I am mentally noting that I will need to pick your brains as I travel further down this road. There is no blueprint in there? It’s like the satnav has been turned off and we just have to trust in each day (which is horrendous for my anxiety).
I hope you feel better after crying. I have cried a lot recently and it always makes me feel better, afterwards at least. Really lovely to have you here at This Woman’s Work… this is why I write, for moments like this. Thanks for being part of our lovely community.
Oh gosh…such a hard road.
Ed Davey is very pro carers due to his own experience but I think we are in a place now where individuals are only valued for their ‘work’ contributions to society. Those who cannot ‘offer’ work such as the sick, the vulnerable, the elderly, those with care responsibilities etc are not a priority, they are not adding to the profit of shareholders and increasingly it feels that it’s all about the money … and some people can never have enough such as the odious billionaires that now seem to have a hand in politics. I’m fighting back. Care matters. Corporations don’t.
Ed Davey is a fantastic champion for unpaid carers, but although he regularly brings issues up in parliament we are still pretty much ignored. The country is broken, and still under continuous attack by a variety of bad actors, it will take years to fix, and family carers are at the bottom of the mountainous pile of issues. Unpaid carers actually contribute an estimated £184 billion (yes, billion) to the economy annually, so we do actually have an effect on the state of things. If we could all walk away from our responsibilities at the same time the system would collapse. But we won't, and they know we won't. Social care is a can each government is happy to kick down the road, none of them want to touch it, but it's only going to get worse. Ultimately it will go the way of an insurance, but what that will look like will be dependant on who is in the driving seat and who is pulling their strings. It is a ticking time bomb, and it's getting ever bigger with every passing year, there are generations coming up who won't have the property or savings for social services to raid to fund care fees, and no relatives in the financial position to give up their lives to care for them.
I haven't read your essay yet (I came straight to the comments as you suggested in your note), but I will read it later on this afternoon, and no doubt add another comment. I'm pleased you're talking about this, we need as many voices as possible speaking out.
Absolutely agree Wendy… who cares for the carers? The real people who are holding the country together? Surviving on a pittance, begging for support, over looked and undervalued time and time again. Held to ransom and bound to their loved ones as the state watches on impotently. I hear you. 😔
Thanks Mary. All carers walk a long, hard road. We don’t live in a society that is set up to care. I fear caring will get harder as we become further entrenched in the politics of profit and power and not care and compassion. Who cares? Certainly not most people in power!
I agree with this. Although I have to say Ed Davey spoke a lot about carers in families and has spoken a lot from experience and had more of a vision to change things.
I think Keir Starmer has tried to talk about caring with reference to his own family but has ended up sounding like a broken record (I'm sure that phrase is out of date!).
This resonates so much for me. 10 days ago my 95 year old mum fell and broke her pelvis. She is currently still in hospital but should be going home early next week (with carers in every day). My dad (92) has enjoyed the time at home without the responsibility of having to look after her. Neither of them was well before this episode and my dad was getting very tired doing all the cooking etc while trying to stop my stubborn and impulsive mum from making herself ill by overdoing things.
I so get this too. I have friends who lost their parents years ago and I often feel I don’t have the right to talk about my anxiety or stress with them as they would give anything to have their parents still with them. My friends are really supportive though (and very fond of my parents) but I am still conscious of their losses. It’s hard.
I’d bet that most would be doubly appreciative to support you, Rebecca: it’s an opportunity to remember what *we* had too, as well as to care for someone we care about in the here & now. I certainly do (& just did 🙏).
For whatever that’s worth …
That’s a really lovely thought DC, I didn’t think about it that way but I think you are right. My friends are super supportive and I worry that I lean on them too much but maybe supporting me is a comfort to them too. Thanks for this… it makes a lot of sense. 😌
🙏
Glad that gives you pause, Rebecca — and again, thank you for giving me a chance to reminisce about the people who most impacted my character ❤️
In it together DC ❤️
Gosh, I am feeling this Helen. It has been hard on my dad caring for our mum (even with the help of us and carers).
It is difficult to stop our parents from overdoing it. You can’t watch them 24 hours a day and at times we have found dad precariously balancing up a ladder or mum over reaching for something endangering her fragile hip. It’s frustrating. For us and for them.
I hope it goes well when your mum comes home… it’s all stages to navigate (often without a compass).
Sadly I went through the same sort of thing with my parents-in-law a couple of years ago so I have some knowledge of how things work…I wouldn’t recommend being responsible for four 90+ year olds. I feel guilty for finding it hard going when all my contemporaries have already lost their parents.
Very relatable as I have flown to stay with my mom who has “light” dementia which means she can still add up her rummikub scores faster than I ever could and win too! But she’ll repeat the same question again and again and swear she hasn’t played rummikub for years- although we just played yesterday…
Oh Audrey, that must be sad for you and anxiety provoking. Can you stay long term? I feel such guilt at not being able to uproot myself but I just can’t.
I love the fact you can still play rummikub together… these little things become really important and significant when the world starts to become smaller. You sound like you are doing a great job.
I understand so well. Went through this with my dad a few years ago. He was in poor health and wrote off the lumps on his neck as lymph nodes he had to have drained previously. He went to have them drained and they were actually an aggressive type of cancer and he was gone in 4 months. He went from just being sick to gone so fast, yet his biggest concern was that he lost his beautiful silver hair. My 90 year old mom has blossomed since he passed, although she's slowing down. I swear she'll outlive us all. My heart is with you as you navigate all of this. It's so hard. ❤️
Ah I’m sorry to hear about your dad. Such a short time from diagnosis to his passing, what a shock. I’m glad your mum is still going strong, she sounds amazing.
Thank you so much for your kind words ..’navigate’ is a good word, like a ship without a compass, we keep hitting waves 🌊 but we keep going. ❤️
And the only answers are in the stars, from which we came and to which we might someday return ✨
My heart goes out to each of you, and other commenters too 🙏
It’s a curious feeling that I only partially appreciated at the time, but the relief we (5 siblings of 5 total marriages) had at the end of each of their relatively brief battles against cancer meant that the pain of their losses was reduced, and also that the vast majority of our memories are of them at their best & most ridiculous ❤️
As my partner’s parents and their siblings have hit old age, I’m seeing what you describe so poignantly in slo mo & arm’s length (for now) — and I’m again regularly reminded of what my parents missed.
It’s complicated 🙀
But love & life are too, so please be kind to yourself as you work through all this.
Such beautiful words DC… ‘the answers are in the stars’… that made me tear up 🥹
Thank you for sharing and caring… in a world that seems to value neither, I’m so glad we have this special space to do both. ❤️
Anticipatory grief is completely draining, it's a grief that never seems to progress, but instead just hangs around your shoulders like a heavy cloak. I'm having a slightly different experience to yours, my nother has dementia, and I'm an only child, so the only person I have to argue with and disagree with is myself. But we have quite a few similarities. Half of the last 7 years of my caring journey have been spent trying to persuade my mum to do things that will make life easier and more pleasant for the both of us, and her care, but she has fought me every step of the way, and now we are both paying the price for her pride and her reluctance to face reality, I have both sympathy and frustration on that score. I've also spent most of those same years feeling immensely resentful. God hasn't struck me down, yet, but I have been left to stew in that pot of resentment. I think it's important to recognise how this journey makes us feel, all of those emotions are going to bubble right up to the surface, and trying to suppress them will do nobody any good, but when we've felt them we have to learn to let them go. They will return, probably many times over, but each time we should acknowledge how we feel then let it go again.
If I can I would like to recommend a book called Travellers to Unimaginable Lands by Dasha Kiper. It's primarily written about/for carers of dementia, but it addresses the emotions like guilt, frustration and resentment that most carers go through. Carers spend much of their time feeling like they are invisible and under appreciated, this book helps them feel seen.
This is really interesting Wendy… I think grief is so much more than just the death of a person… it’s not always easy to articulate but I think grief forms a huge part of all of our lives.. grieving what we have lost, what we never had, what we will never get the chance to do or be or feel. I’m adding anticipatory grief to the list.
Thank you so much for the book recommendation Wendy.. I’ll have a look at that.
Thank you as well for your comments … ‘anticipatory grief’… I don’t think I’ve ever heard of that before but it sums up my feelings exactly. ❤️🩹
I did an online afternoon carer's course about it a couple of years ago. It applies to a situation where you start grieving while the person is still alive, and you are losing them slowly. It's talked about a lot in dementia circles as the stages of decline are often very prominent, happening over a long period of time, and it's like you are losing them piece by piece. It helps to understand and recognise it as grief as it makes sense of all the different emotions you can go through while the person is still alive.
I know a little about this, my mama passed weeks before her 60th birthday and before that she was in bad health. My dad lived a few more years in declining health and getting mad at the thought of the growing list of things he couldn’t do. It’s really sad and scary dealing with this.
I’m sorry for your losses Julia.. it’s a lot to witness and process.
Nobody wants to feel restricted by aging but for some it is unavoidable. Sad and scary are good descriptions.. thanks for sharing, really appreciate your thoughts.
That's why I wanted to comment on what you'd written. I always believed I was invincible, strong and never gave up, but my body told me otherwise. I am very strong, resilient and determined, but I know I need to take care of myself now which I'd never really done in the past. The more we share our experiences, the more we can support each other.
Absolutely Karen… that’s why I write, to support and share and that’s what This Woman’s Work is all about… building a space to do that. I no longer work in the NHS, in a caring profession but this is part of my new work now. But I still need to practice self compassion… it doesn’t come naturally but it is a big part of my midlife rebirth. Thank you for sharing and supporting.