Experiences of CLL- possible TW

[SockFluffInTheBath]

Following admission for a fall my MIL has been diagnosed with CLL. Her white blood count was 500,000 on Wednesday and has increased by today. They advised a week of ‘standard’ chemotherapy before starting the targeted drugs in order to hammer the count down somewhat and give the treatment a chance. She has Alzheimer’s, pulls out cannulas, and refused the tablets today until DH doubled back to the hospital to encourage her. She’s extremely tired, and said tonight she feels really unwell. It’s looking pretty desperate at the moment, honestly please- how does it end if she can’t be treated?

I wasn't sure whether to reply to your post OP as my experience of leukemia is not a good one but I could see no one else had replied. My DM had AML which is the aggressive form and had chemo but it was the intensive course, followed by the maintenance medication which may be the same as mentioned for your DM. What I will say it was hard, very hard, and my mum was a fit 69year old, so I can't imagine how it's making your DM feel.

I would recommend signing upto the Blood cancer.org forum, I'm sure you'll find some help and support on there.

I wish you and your DM all the best x

Thank you @Ilikewinter i appreciate you replying, I’ll look for that forum. I’m sorry your DM, and you, went through that.

DPs dad had a diagnosis of CLL for 5 years, with rumbling infections from various other health issues. From COVID onwards he isolated himself as he was extremely vulnerable. This could be very difficult as he didn’t like his wife going out either and although that was understandably to some extent, I think she was effectively imprisoned with him. In the end, he went to hospital with an infection, caught Covid there, and everything together overwhelmed his system and he died. He remained cognitively fine throughout and came home to die surrounded by his family.

If I’m honest I would want a serious discussion with the haematologists, the palliative care team, the geriatricians and the psychiatrists about goals of treatment and whether putting her through distressing and confusing courses of treatment is either realistic or in her best interests.

Thanks @PermanentTemporary there was a meeting on Friday where quality of life etc was discussed by DH and the medical team, and they were in agreement that treatment was the best course of action.

Another difficult day today though, and FIL is playing up because he’s not centre of attention.

She’s not eaten today and no tablets at all. They basically go in, put it in front of her, and walk away. It’s a ward for elderly people and elderly with blood cancers and there are 3 nurses. They won’t move the tablets to a time we can support, so they’re just going to let her die.

Managed to get her favourite carer back starting first thing tomorrow morning. God knows where the money is coming from as it’s not funded, but that’s for another day. Doesn’t matter that she’s happy as you like at home with her cat, jigsaws, and wandering round in her garden, according to doctors who met her today she’s not worth trying with apparently. Just a drain that can be cut off. I am beyond livid, I really am. It’s a ward for old people and they’re acting like they never saw dementia before.

@SockFluffInTheBath for your MiL is going home being prevented?
Even when you’ve lined up support?
It feels like we’re so far from person-centred care where individual circumstances are considered.

@FiniteSagacity there’s a dols, and told if we take her it will be without the meds. Carer will be in at 8am and DH at just after 10, so we’ll see how that goes.

Not CLL but Lymphoma- my MIL who passed a year ago age 76. It was awful. We raised questions from the get-go as to whether she would cope with chemo as she was very frail, but they told us it was a special type of chemo for older people that was very well tolerated. She didn’t have dementia but she had delirium at the beginning, which resolved. She had about 2 treatments (3 weeks between doses so this all took around a month) but her organs began to fail and they recommended she move to palliative care.

TBH it just felt like we were torturing her, without her understanding or consent. We would talk to her about her condition but she couldn’t retain it and was so confused. She was miserable in the hospital, she was weak and ill. I really wish she never had any chemo and went straight to palliative care. I suppose no one could have known how it would play out but the whole experience was horrible. I remember the first meeting was with the consultant and her SHO, they were reassuring and upbeat. The last meeting (when she was moved to palliative) was just DH and the SHO in a corridor. It just felt like she failed & was was written off.

im really sorry for your poor MIL. God forbid if I get a serious condition at that stage of my life I’d prefer to refuse treatment and focus on comfort.

I’m so sorry @N0tfinished

I’m not entirely without reality here, I think DH may be. I feel like it’s worth trying, that her quality of life (at home) is worth fighting for somewhat, but if the next couple of days don’t see significant improvement (with carer 12hrs/day) then we’ll have to reassess. It’s a very fine line- just because you can doesn’t mean you should- and trying to not be on the wrong side of it.

I think the thing that was hardest was to decide a course of treatment that makes them feel sicker without their enthusiastic consent . I’m all for it if it improves QOL but when they can’t understand it’s so difficult

The first 2 days of chemo pills went in, with no obvious effect one way or the other. The new ward has been awful though, without family going in she wouldn’t have eaten anything. It is a balance, and while DH is unravelling I’m very mindful of the responsibility to not put her through unnecessary discomfort. My earlier rage was from them just discarding her chance- she won’t cooperate and we don’t have time for patients like that.

Bless you, it's so hard. I have had two relatives refuse treatment, one who was confused and kept pulling out tubes, and one who did have memory issues but was conscious enough to decide they only wanted palliative care.

In my experience, medical professionals generally do everything they can to prolong life, even when a person had dementia and has expressed a desire to die quickly. So I think if they are saying she can't be treated, it probably is because the distress it will cause her outweighs any potential benefits. And living with both dementia and cancer will quite quickly mean more pain and more confusion, which was horrible to see my relative go through.

Once we understood that both their confusion and the pain of the cancer were only going to get worse, we were able to see them not eating as life coming naturally to an end, and focus on keeping them as comfortable as possible. We were with them as much as possible and tried to reassure them. But it is very painful accepting they are not going to get better, and that even the simple quality of life they were able to enjoy has gone forever.

When my dad fell and broke his hip, I couldn't understand how a fall could be fatal, but it often signifies that the person was struggling more than we realised, and then speeds up the rate of deterioration. If you haven't experienced it before, it's brutal. Much love to you and DH as you go through this. She is lucky to have you supporting her through this difficult last stage.

Sorry, should add, we've been through horrendous end of life issues with 3 of our 4 parents and it is so painful, but looking back, we were so glad we could accompany them on their final journeys. It is utterly grim but also incredibly special at the same time, because it's a time of so much love. I hope you may feel similar one day.

@BishyBarnyBee thank you for your posts, I understand people are opening up about painful experiences.

I think maybe I’ve not been clear, I don’t think I am deluding myself. Pre-fall MIL was extremely happy at home, she’s like a sweet child. As long as she eats and sleeps then her Alzheimer’s is ‘stable’ and she cooperates with everyone but FIL. She won’t eat or drink unless you sit with her. So between being woken through the night for obs, and no one having the time to sit with her so she eats midday, she’s massively out of kilter. They’re not saying they won’t treat her, they’re saying if she won’t independently take the pills left on her tray then there’s nothing they can do.

Hospital admission for someone with Alzheimer's is absolutely discombobulating, the different rhythms of the day, lots of people hurrying about, taking tablets you don't understand the reason for. It can completely overwhelm.

It's not that the staff want her to die, it's simply they are not staffed to sit and encourage reluctant patients to take tablets and eat and drink. I hope the carer being there will re-assure her and improve the situation but frankly that sort of confusing situation can take weeks to recover from.

I think Notfinished puts it very well -
I think the thing that was hardest was to decide a course of treatment that makes them feel sicker without their enthusiastic consent . I’m all for it if it improves QOL but when they can’t understand it’s so difficult

Sorry, you probably were clear, and that doesn't sound right. MIL could take her pills in a spoon of yoghurt at the end, but if they'd put them down in front of her she would not have taken them.
Is there a senior person you could discuss it with? Or could you try PALS, they have got good results for a friend who was unhappy with her treatment recently.

@DPotter i take your point, genuinely I do.

DH and I had what can only be described as a brutal conversation late last night, and he decided to give it up to 48hrs with the carer back, and watching for side effects, and make the call by then as to whether chemotherapy should continue, or we should bring MIL home.

Carer arrived before breakfast rounds. MIL remembered her (it’s only been a few days, but you never know), has had 2 breakfasts, mid morning snack, and lunch. Taken all her pills without complaint, and had quite a bit to drink. Seems bright and happy today, like our MIL not the hospital shell. Clearly not out of the woods wrt potential side effects springing up, but she just needed someone with the time to sit with her. Fingers crossed she tolerates the treatment.

Oh that's a really positive update @SockFluffInTheBath, take the win for today!

That sounds really positive Sock

It is positive, I know we’re not out of the woods, but MIL is comfortable and happy for now.