Can't visit terminally ill mother

[Cherrycee]

I'm just wondering if anyone else is in a similar situation to mine, and if so how are you coping?

My mum was diagnosed with terminal brain cancer just before Christmas, and she had radiotherapy aimed at managing the tumour and giving her more time. But we are talking months, not years. My dad is in a nursing home with dementia and mum decided to move in there with him, this happened about 6 weeks ago.

Now because of coronavirus, visits are banned unless in exceptional circumstances (i.e. someone is about to die) and even then it's only one family member, in full PPE, for about 10 mins. I fully understand why they need to do this, but I'm terrified that mum will start to go downhill soon and we won't be there. She has some mental health issues and is very anxious anyway, and this situation has just ramped it up completely.

There are outbreaks of coronavirus in several other nursing homes in the area, and a number of deaths. We got an email during the week telling families to be prepared, as older frail people don't do well on ventilation and end of life care needs to be considered now.

The whole thing is absolutely terrifying, and the thought of my mum being separated from her family while she's dying of cancer is just too horrific to comprehend. Yet it's probably going to happen.

How on earth do you come to terms with this?

[oncemorewithfeeling99]

I’m so sorry. This is unbelievably hard.

[FredaFrogspawn]

I know it’s not the same - I’m missing mum so much. She has Alzheimer’s but still knows me and loves visits - you have huge sympathy from me.

Can she use FaceTime etc?

[Al1Langdownthecleghole]

Yes, me too Cherrycee. I’m sorry you are going through this too. I’m literally waiting for the phone call to permit a short visit as there is simply nothing else I can do. I’ve worked in palliative care and always imagined I’d be there at the end holding Mum’s hand, but that can’t happen now.

This is very hard. I wish you and your parents well.

[Cherrycee]

Thanks all. It's just hard to wrap your head around what's going on at the moment.

Al1Langdownthecleghole I'm sorry you're going through this too, it's so hard. At least we know they're being looked after but not being able to see them feels so wrong.

FredaFrogspawn Yes we get brief FaceTime chats about twice a week which is something, but mum's not all that comfortable using it. And there's always someone else in the room and I get the sense she doesn't feel she can chat openly. I hope your DM is doing well and that you can see her before too long.

[Al1Langdownthecleghole]

How are you doing today Cherrycee ? Hope your Mum is comfortable.

[HollowTalk]

It's a terrible situation. I'm so sorry. My adult children are in this position as their dad has a terminal illness and isn't expected to last many more months. He's in a nursing home receiving palliative care and I don't think they will see him again.

[Cherrycee]

Al1Langdownthecleghole I spoke to mum on the phone yesterday and she's very upset about the whole thing. But health wise she seems to be doing reasonably well.
I hope you're doing ok too. Have you been able to speak to your mum or is she able for that?

[Al1Langdownthecleghole]

Hi Cherrycee I'm glad you managed to speak to your Mum on the phone, I'm sure she was pleased to hear you. If she is stable health wise, I hope you are able to meet up in person before too long.

My DM continues to gently decline, last night they suggested I might be able to visit today to say goodbye, but this morning I'm struggling to get through on the phone...

I understand that Nothing can change the outcome now, but the ability to have good palliative care has become so much more difficult, it's almost impossible to meet peoples wishes.

[joystir59]

Can't you take her home and look after her with carers?

[joystir59]

My wife is terminally ill with weeks to live and currently in hospital. She had to receive her terminal diagnosis on her own. I'm heartbroken. I've complained about this blanket no visiting policy.

[Arrowcat]

Joystir59 I'm so sorry to hear this and sending lots of strength your way.
One thing to ask is if she has a recent covid negative test can she be transferred to a hospice. If the hospice is currently full ask to be put on a waiting list and updated on it daily. You may find you are able to visit a hospice.
You could also try phoning MacMillan and Marie curie and asking if they can help you put a plan in place for care at home so she can be discharged.
Keep pushing and rmdo not feel guilty for doing so.
Xx

[Buttybach]

Im so sorry you are going through this too I am in the same situation with my Dad. He has been diagnosed with a Glioblastoma and has been in for 3 weeks. We cant visit and on the last call he had lost his speech.
Its so cruel. Whats made it harder is having all the information relayed by phonecalls.

[Jennygentle]

It’s so hard, OP. I haven’t seen my poor mum since March. Her home were just re-starting garden visits when they got a positive result and have had to lock down again. You have my complete sympathy.