My mother in law has acute myeloid leukaemia and she is over 70. My husband and I live in Scotland and she is in Northern Ireland. She is receiving treatment and regular transfusions and platelets however this is now her life as no other options for her. Covid and heightened risk of infection has almost made her anxiety of contracting future infections heightened. She lives with her husband and is refusing contact with her children and grandchildren due to increased risk of infection. We have booked to visit this weekend on the assurance she would see us for even just a coffee in her daughters house with windows open and she has refused. This is so upsetting for us and would welcome any advice or sharing of similar experiences. Many thanks
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HI @Vickyt,
A very warm welcome to our forum. I am so pleased you have reached out to us and thank you for sharing what both you and your family are going through.
It sounds like a really challenging situation to manage & be part of. It is no wonder you are finding this really upsetting.
Please do know that if you wish to talk anything through our helpline is always here for you- Blood cancer information and support by phone and email | Blood Cancer UK.
To offer some amount of reassurance, we do know that you are not alone in this. We have heard from many families having similar difficult conversations around managing risk and finding the right balance between living & continuing to protect themselves.
May I ask Vicky, has your mother in law been able to access any support for her anxiety or indeed talk openly about her fears with her treatment team? I ask, as it sounds like she has really overwhelming fears and i wonder if accessing some support would be a good next step with the full support of her GP & or haematology team.
In case it is helpful in any way Vicky, we have previously published a blog highlighting the importance of making the right choices for people affected by blood cancer. It offers real life examples of how some others in similar situations have managed with opening up their world again whilst still considering risk- Blood Cancer and Covid-19 Making Choices that Work for You | Blood Cancer UK.
Additionally, we are holding an Ask The Experts session this evening where we will be addressing winter worries including how to adapt from shielding and makings steps to reduce both anxiety & social isolation. You don’t need a Facebook account to watch it. It’ll be streamed live on our Facebook page - (20+) Blood Cancer UK | London | Facebook & you can watch it back via our you tube channel.
Again Vicky please feel free to contact our helpline at any point as we would only be more than happy to support you through this.
Take Care, Lauran
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Thank you so much lauran for taking the time to respond and for your helpful advice. We will look into it all. It’s so hard as we can’t talk to professionals and she gives us very little information so we feel totally in the dark. We try to talk about the benefits of seeing family for her mental health yet she continues to talk of infection risk so it leaves us with nowhere to go. I may well call the helpline thanks again
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Hi @Vickyt. Thank you for sharing your story. I feel for you all so much. I have a different blood cancer to your mother in law. However, I am going to be completely honest and say that at times I have really struggled with my mental health and I must admit I have become withdrawn and not felt able to see people, even close family. Rather than upset them too much by saying “I can’t cope with seeing you at the moment” I have sometimes given the reason as not wanting to risk picking up any infections. Thankfully I am in a bit of a better place at the moment but I wanted to share my story in case it helps at all. It can be complicated when a loved one is suffering. Maybe your mother in law is feeling very emotional at the moment and is worried about upsetting you if she gets upset? Hope that makes sense. I am thinking of you all very much. Warm wishes. Willow X
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Hey willow thank you so much for bravely sharing a bit of your story and your thoughts. I really appreciate your perspective and totally understand that. Thanks again and thinking of you x
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Hi @Vickyt and I am so glad that you have found us, welcome.
I also really feel for you.
Being a caring family member is so, so difficult and you also have the mileage between you, to take into account.
You and your husband are really in a powerless situation.
You are also reliant of getting any medical information via her or your relatives
Personally, I feel our fear and anxiety is partly down to the last nearly 3 years of Covid times, our isolation and the continual media coverage earlier on.
Most of us have weakened or compromised immune systems.
Getting infections etc. is scary for us as it might mean it is more severe, or a hospital stay and with a longer recovery period, especially as your mother-in-law is on treatment.
Children do face an increased risk of infections and also meeting people from further away.
However if someone’s fears and anxiety is overwhelming them and affecting their mental health and quality of life then it would be so nice if they could reach out and accept some professional help. Her GP might be a good starting point.
You have been given good response from @LauranBloodCancerUK and @Willow.
Perhaps taking a lateral flow Covid test beforehand, hand sanitising and wearing a mask might give her some peace of mind.
Please let us know how you get on and we, the Blood Cancer UK website and the Blood Cancer UK support line are here for you.
Look after yourselves.
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Thanks so much @Erica and I’m so glad I found you all. I think yes understandably anxiety heightened. It’s just so difficult being far away and feeling so helpless. Cancer affects the whole family. We would never do anything intentionally to increase her risk however we are trying to balance physical and mental health risks for her and quality of life factors as I don’t think she has long. We can’t force her if not comfortable but we are struggling to understand some of her logic as she would prefer to meet us in a busy garden centre coffee shop rather than in my sister in laws house with just us. We feel this may be the last time we see her and this public place is so impersonal and all we want to do is hug her and she sits away from us yet staff come to collect plates etc. I don’t understand and I fear keeping our toddler away from her may cause more stress for us all. So difficult.
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Hi @Vickyt Perhaps logic goes out the window sometimes and perhaps it has to be what your mother-in-law feels more comfortable with.
I expect she feels fearful, scared and out of control too.
You did not say that her condition is terminal before, have you been told this or is it because of the travelling logistics?
I am lucky enough to live with my condition and my 70th birthday, just before Covid, was my best ever.
Please let us know how you get on and look after yourselves
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Yes it feels that way. It is terminal. Thanks for ur thoughts and support
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Hi @Vickyt I am so sorry to hear that your mother in law’s condition is terminal.
We are here to support you so you can say how it really is for you on our forum.
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I am so sorry for you all . Must say I am in similar position but I am the one with cancer. I have not had vaccine due to other health condition and reactions. My understanding anyway is vaccines may not offer much protection anyway so risk of Covid or infections is worrying. I am due to start treatment soon and I do not and will not see most members of my family. I still see my daughter when I can as she is still sort of shielding. I belong to a couple of groups who have various health conditions are are still shielding and will continue to do so. One group is campaigning for Evusheld which is an antibody jab that offers protection from Covid and would make such a difference to peoples lives. Children are high risk particularly if they are attending school. Lots of high risk families have been negatively impacted which is sad. If it was summer it would have been nice if you could meet outside with masks.
It is very difficult for all parties. Can you video call? I communicate with my daughter like this everyday and it feels like she is here with me. I have meet friend outside in a mask and we go for a walk in the park. I hope you find a solution
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Yes, @Sandra it must be very difficult and restricting for you all.
Yes children are high risk particularly if they are attending school. My son actually works at a university, so he is also high risk.
Video calling is a great idea.
Look after yourself and please keep posting
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That’s really difficult for everyone involved. I have recently had a bone marrow transplant which has left me with extremely low immunity. It’s not that I feel especially anxious, but my husband and I will not be indoors with anyone else because the risk is really high. However we are happy to meet family outdoors. We can chat at a safe distance. Of course it’s really tough but there could be ways round this. Could you do a short walk with your mother in law? It’s really sad, but I would also refuse contact with children.
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Hi Vicky
So sorry to hear about your mother in law. It must be so upsetting for everyone. I can totally understand why she is scared to see people. If she catches any infection she could become seriously ill. I have also has Acute Myeloid Leukaemia four times and been lucky enough to get a bone marrow transplant. Despite this I am still shielding, I haven’t been able to see my daughter, grandchildren or any family members for fear of catching coronavirus for over 2 years . I am probably being over cautious but I have to make tough choices and unfortunately she also has to.I really hope you can all find a way around this but you will all have to respect her wishes. She is probably full of anxiety and fear, god bless her. Sending love and I shall say a prayer for her . Good luck xx
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Hi @Otterfield a great big welcome and although it is still very restrictive it sounds as if you and your husband have come to a socialising decision that feels right for you at the moment.
I wonder if you use video calling at all with family and friends, I believe some do and it helps to keep contact with youngsters which is so important.
Look after yourselves and for you, you and your body have been through a lot and it will take you time to build back up.
I have a couple of friends that find it difficult to comprehend that I am happy being in my safe space of shielding and not mixing with anyone outside of my house hold
I was very cautious before covid I would only go to certain places to have a coffee that I trusted I used hand sanitiser and would wipe everything
I would avoid anywhere that had kids in it
Covid has heightened the need to be more than cautious not only for covid but any illness out there be that the common cold/chicken pox/measles childhood diseases/D&V
At the risk of being dramatic these could potentially kill me.
The anxiety of getting any of them is real and unless you live with this fear it’s hard to get others to understand
I will protect my health to any means and if that means restricting seeing people then I will do it
I have built my new way of living through zoom telephone calls and FaceTime and I do more with my time than I did pre covid
Most of my group of friends and family respect my choice and support it and we have made it work over the last couple of years.
They have seen how poorly I have been through chemo and transplants and I know they would be devastated should they pass on anything to me.
Daily I have an hour plus call with my brother we have an amazing relationship because we have spent the last 3 years building it something that probably wouldn’t have happened pre covid
He is my biggest supporter and will protect my life as much as he can
I have weekly calls and FaceTime with my friends
We actually make time now and I have built better friendships
I don’t need to be in peoples presence to be their friend/family
I will always be their friend family just in a different way
We send cards and flowers to each other and my friends drop off cake and then we FaceTime and have coffee together
We send each other a costa
We just think outside the box of a different way of making it work
Mostly we all want to make sure I’m safe and happy
Before my recent transplant
My friends would sit outside my window
I have a chair and blankets and would make a cuppa put it outside and chat through the window
I do go out for a drive and I get a drive through coffee and I sit and watch the world go by
I have a great rapport with the servers at the coffee window I wear my mask and they know why and respect my fear
Oh and I recently chatted by phone through my window to one of my friends who dropped some bits off for me
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Hi Erica,
Thank you for your encouragement and support. Things are working for me and my husband at the moment, although we miss having a bit of a social life, as well as just wandering round shops and relaxing in coffee shops. I am a local preacher and miss going to church.
I speak to my sister on the phone and we’ve had occasional video calls. My youngest niece is 28 and we all have a cheerful relationship via WhatsApp and a group family chat on Signal. The only child in the family is my nephew’s stepson who I have barely got to know yet. To be honest, I’m not likely to get to know him any time soon as his mother has refused his childhood vaccines! And of course all my childhood immunity has been wiped out!
However, it’s all worth it to stay well and free from anxiety.
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Hi, I echo what everyone else here has said, but I have one question. Have they said that your mother in law is not eligible for a stem cell transplant, or is it that she doesn’t want one. I know that the local unit where I had my transplant nearly 3y ago is doing transplants on people in their seventies, so it may be something to consider.
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My wife and I have been isolated since the start of COVID.
She has recently had the evosheld vaccine at great expense.So we are hopeful that will give us a bit more freedom.
I think the caregiver deserves a mention- not that we are seeking praise -especially when our loved ones are suffering….
I have found myself frustrated with my wife, she, as a person is absolutely risk averse where I have on rare occasions met up with friends ( in a relatively safe situation) but I’ve been forced to keep this information away from her as her fear reaction can be overwhelming for her.
This has helped me personally. Furthermore
I honestly believe that life is risky…. We have to take calculated risks in our lives.
I would welcome any feedback on all the caregivers out there.
Sincerely
Steve
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