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What can you do to cheer them up?


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#1 Lucrezia Borgia

Posted 20 March 2017 - 07:21 PM

Is there anything you can do? I feel so useless.

Mum has been in hospital now for a month. In the same ward, has had one outing with my sister and i which wasn't overly successful (she vomited, collapsed - we had to bring her back).

As far as they know her lymphoma has returned, but they don't know that for sure - they are having a really hard time diagnosing. She's very unwell. Frequently runs a temperature and soaks her sheets in sweats. Very weak, no appetite. Has had a bone marrow biopsy, 2 blood transfusions (anaemic), a lymph node biopsy, fluid from her stomach drained, they take blood from her Every Day (I know they need to, but).

She just lies there. We have brought her books, magazines, her iPad where I've downloaded some podcasts....she says she doesn't have the strength for any of it. Last couple of days both my sister and I have visited and after ten minutes she's said she just wants to sleep and we should go. I feel awful for her - but obviously there's nothing worse than feeling sick and feeling you have to talk to people. I don't know what to do.

Efs

Edited by Brutta Borgia, 20 March 2017 - 08:26 PM.


#2 DebbieDoesSanta

Posted 20 March 2017 - 07:27 PM

I have no advice but thinking of you. It must be really difficult.

#3 baking101

Posted 20 March 2017 - 07:28 PM

Oh that is really rough for everyone involved. I'm sorry.

I just used to sit and read, or just sit, while my Mum slept when she was very ill. I just relished the time being with her, even when she wasn't saying or doing anything.

#4 Nasty Poobah

Posted 20 March 2017 - 07:39 PM

My mum's in hospital for pain management for her myeloma at the moment. (I thought of you when I vented about cancer a few days ago). I honestly think all you can do is take your cue from her. Sometimes just being there is all that's needed. I fully understand wanting to do something, BTDT!

Sending you a big hug from a random stranger.

#5 Silverstreak

Posted 20 March 2017 - 07:41 PM

Firstly, big hugs xo. I'm sorry your mum is so unwell.

What about audio books or some of her favourite music that she could relax / doze to?

I was sick in hospital for a month (recovering from pneumonia) and I really liked looking at flowers that loved ones had brought me and playing simple card games, like 21 (as it was hard for me to concentrate on things.)

This sounds weird, but I also liked filing my nails (never really had the time to do it before, but it gave me something to focus on.)

Favourite TV episodes on the iPad? (rather than a whole movie)

I also liked hand creams / shampoos etc that had a citrus smell, so I didn't feel like things smelled like a hospital all the time.

Anyway, I just wanted to say that I'm sure that just your presence is a huge source of comfort for your mum. :heart:

#6 born.a.girl

Posted 20 March 2017 - 07:55 PM

So exhausting for you all - your poor Mum.

When my FIL was in palliative care, he also didn't have the strength to talk to us, or interact.  He said one day 'just talk among yourselves, I like to hear you all talking', and he'd just close his eyes and we'd talk.  We did feel a bit daft, and topics were obviously pretty heavily censored.

I wonder if that might work for your mother?

As per a pp, she might also like you reading lightweight articles.


Once after major surgery I didn't want to interact for a bit - wanted people there, but not with them trying to talk to me.

#7 cait81

Posted 20 March 2017 - 07:55 PM

I have cancer and was in hospital for close to six weeks last year recovering from a difficult surgery. Things that helped me were outside food or smoothies, short visits from people, hand and foot massages. Does she have a pet? Perhaps it could visit? Also some hospitals have therapy dogs that just come and lie on your bed for a while. I found that very comforting.

#8 maryanneK

Posted 20 March 2017 - 08:04 PM

just wanted to say I'm sorry OP
I like the PPs suggestions. not at all on the same level but when I was in hospital once recovering from a minor operation I still remember my dad coming in to visit. he pretty much just walked in and said' oh you're not well enough, you need to sleep' and I just went yep and dozed off....but just knowing he was there was fabulous

#9 Therese

Posted 20 March 2017 - 08:14 PM

I have nothing helpful to add but I just wanted to say I am thinking of you and your mum. xxx

#10 Lucrezia Borgia

Posted 20 March 2017 - 08:24 PM

View Postcait81, on 20 March 2017 - 07:55 PM, said:

I have cancer and was in hospital for close to six weeks last year recovering from a difficult surgery. Things that helped me were outside food or smoothies, short visits from people, hand and foot massages. Does she have a pet? Perhaps it could visit? Also some hospitals have therapy dogs that just come and lie on your bed for a while. I found that very comforting.

Thanks all - I will run out of likes soon but I'm reading all the replies and appreciate them.

Yes we've brought her outside food, which she was appreciating but lately she's just so weak and has no appetite.

She doesn't have a pet - my kids came to visit which I think she liked but they've  both now got runny noses and I'm paranoid about giving her something - she's in an oncology ward and everyone there is pretty compromised.

I like the suggestion of just being there. Maybe if I bring my iPad I can assure her that I'm doing work and emails and she doesn't need to chat to me if she doesn't feel like it - but I'm just there for her if she needs me.


#11 nup

Posted 20 March 2017 - 08:35 PM

I'm sorry BB. Sending you and your mum some rainbows. Nothing easy about any of it.

Eta how is she with touch? Sometimes i gush a bit too much ehen my kiddos hold my hand. Perhaps she'd love just a little bit more than what you'd normally do?

Edited by nup, 20 March 2017 - 08:36 PM.


#12 Soontobegran

Posted 20 March 2017 - 08:38 PM

I am sorry she is so sick, sometimes it is harder for the people watching on than the patient.

I have had several stints of months, one was 11 months and I found visiting time a real chore when I was really sick but I looked forward to it on good days.
I passed my time doing cross stitch and listing to my music through earphones but honestly when you feel very off you just want to shut your eyes and try to sleep it away.

Take her lead....just before you visit can you ring her and ask if you can bring in something she is craving ?
Also ask if she'd prefer to be alone......that option is tough for you but it may be the preferred option that day.

Is she happy with her care ? Do you think another opinion or even another hospital may help?

Getting into a wheelchair and into the garden was good although it can be a pain for staff who need to help arrange IV's etc but fresh air and sun on the face feels good when all you've had is A/C.

The other thing to ponder is whether she is getting sufficient psychological support or pastoral care ( if that is her thing.)
I found long term hospitalisation may have helped me physically eventually but it sure put me in a shocking head state.

Thinking of your mum and you.

#13 Lucrezia Borgia

Posted 20 March 2017 - 08:56 PM

Thanks all.

She's at st Vincent's in Sydney. I believe she is getting good care- she's had a social worker talk to her a few times. I think her psychological state is not great - I think she's depressed, but of course I'm totally not qualified at all to make that call, and - it must be said - surely anyone who has been in hospital for a month, practically bedridden, feeling extremely unwell with no real end in sight - well, I guess that is a depressing situation. I would like to mention it to her dr - her admitting dr is her oncologist/haematologist - so again, I'm not sure if that's his remit? My sister is much better at talking to the drs so I'll talk to her and maybe we will talk to him together.

She's not talking death, or suicidal thoughts. She's not sad, crying - she has said many times she's actually not in pain per se - just feeling unwell, no energy. None at all. She's listless, and just a shell of her former self.


#14 Fresh Start

Posted 20 March 2017 - 09:00 PM

Mum was at home so all of this was easier to achieve. My kids cheered mum up immensely, hope you can get them in for a visit soon.

Also just being with her. We would sit in her bed with her and just let her be with us. She could talk or not, we were just there.

#15 little lion

Posted 20 March 2017 - 09:03 PM

Sorry your mum is sick. Just another perspective to add ... when I've been sick in hospital, I find time passes differently. You'd expect to feel bored. But I found that I had no attention span so couldn't watch a movie or read a book most of the time. Visits meant a lot to me.

#16 Soontobegran

Posted 20 March 2017 - 09:04 PM

Her admitting doctor is the one to talk to regarding possible extra support as the referral for medical assessment must come from him/her. The pastoral care or social work can be organised by the NUM usually.

I am just speaking for myself here but becoming withdrawn and a bit reclusive is par for the course with long term admissions. It's like you put yourself into an altered state to help you wile away the hours.
The trouble is that sometimes the line between just being generally over it and zoned out and not engaging because you just feel horrendous is very blurred.

#17 IamtheMumma

Posted 20 March 2017 - 09:10 PM

What was part of her normal routine before she went into hospital? Did she get her hair or nails done frequently? Maybe organise someone to come in to do that. Foot massages are heaven.

Did she go to a group regularly? Ask the group to come visit her at hospital for a meeting.

Find little treats that might appeal to her. A piece of her favourite lolly/fudge might entice her to eat.

See if there is an outside garden/sunroom area in the hospital. Ask for her nausea meds to be given before you go to help prevent a reaccurance of last time. You don't need to take her fair. Even just out in the fresh air, facing away from the hospital could do her the world of good. Is she on vitamin D?

Ask the kids to draw lots of drawings for her to help colour her room.

#18 Lucrezia Borgia

Posted 20 March 2017 - 09:20 PM

Yes my sister and I took her to one of those nail places near the hospital - as she loves getting her nails done. We took her there in a wheel chair and she seemed fine but at one point I just saw her go extremely pale and then it happened - vomit - it was such a shame. The people working there were very nice about it - we cleaned it up and the guy who was doing her nails kept at it and finished the job! We gave him a massive tip! It might have been the smell? The smell can be overpowering. Anyway - that was her one adventure outside and she hasn't  felt up to another one - I guess not surprisingly.

She has  been craving tasty spicy food so we've been bringing her Thai salads and I brought her in some Asian dumplings which she liked.

Thanks for all the replies - it's good hearing all the experiences - and nice to know people liked the visits even if you weren't up to talking. Every now and then I just get this awful feeling that she's just wishing we'd all go and leave her alone but she's too polite to say anything! She's certainly earned the right to tell us all to p*ss off if she wants!


#19 Fennel Salad

Posted 20 March 2017 - 09:28 PM

Oh Super Mega F**k!  I'm really sorry about your mum.

Can i ask a dumb question? How can they have trouble diagnosing if lymphoma has returned? Have they done a PET and a bone marrow scan? Is it possibly non conclusive? Does her Oncologist/Haematologist do the rounds and talk to him/her then about your concerns? I would view the treating Dr as my first port of call on this matter and then the Dr can redirect you as necessary.

How to cheer her up? Gosh that's a hard one. What kind of things did she enjoy previously? What if you brought her something nice and beautiful she associates with being at home? I cant offer any great ideas right now as I'm stewing in my own scanxiety juices  (my mum has her PET scan in a week and we find out if her 6 RCHOPs have worked).  


Sigh

#20 Lucrezia Borgia

Posted 20 March 2017 - 09:40 PM

View PostFennel Salad, on 20 March 2017 - 09:28 PM, said:

Oh Super Mega F**k!  I'm really sorry about your mum.

Can i ask a dumb question? How can they have trouble diagnosing if lymphoma has returned? Have they done a PET and a bone marrow scan? Is it possibly non conclusive? Does her Oncologist/Haematologist do the rounds and talk to him/her then about your concerns? I would view the treating Dr as my first port of call on this matter and then the Dr can redirect you as necessary.

How to cheer her up? Gosh that's a hard one. What kind of things did she enjoy previously? What if you brought her something nice and beautiful she associates with being at home? I cant offer any great ideas right now as I'm stewing in my own scanxiety juices  (my mum has her PET scan in a week and we find out if her 6 RCHOPs have worked).  


Sigh

They've done a PET scan and bone marrow scan. It's non conclusive - she was definitively diagnosed with NH lymphoma 2 yrs ago and she underwent chemotherapy for that - a PET scan at the end of the course concluded she was clear of the cancer - but - according to her dr it is a cancer that's known to recur, so she has been on an ongoing course of treatment - retuximab (sp?). So when she presented so poorly 6 weeks ago obviously the first thing they went looking for is a return of her lymphoma - that's what they "think" it is - but none of the tests are actually definitively showing them that. Blood cancers seem to be quite hard to diagnose at times?


#21 Ellie bean

Posted 20 March 2017 - 09:50 PM

Would she like one of those electronic photo frame things where the photo changes every few seconds, with photos of family etc- it wouldnt take much energy but she might like to look at it? Could you sit and read to her- then she can hear your voice but doesn't feel the need to respond? Otherwise I think the idea of sitting and doing work is a good one, I did this with my dad when he was in hospital but not up for constant chatter- that was only short term though so not as rough for him. Sorry you are going through this.

#22 purplekitty

Posted 21 March 2017 - 01:22 AM

Even if your Mum is tired and can't participate I'm sure just your presence is a comfort.
If your sister and you are there together she can listen to your chatting.

Absolutely her haematologist ,or if public the registrar as well, is the person to talk to about your concerns.
Just be aware that they are limited about what they can say without her permission.

It's tough to look on and feel powerless.

#23 Mollyksy

Posted 21 March 2017 - 04:59 AM

It's tough. For mum, things like outside food she happened to be craving, weiss bars and soda water were appreciated. Hospital food isnt the best, and gets less appetising over time. Hand cream. PJs. Her ipad. Paper and a pen. Colour book. Ice for the water. Being there while she showered. Outings were too exhausting. Could someone come in to do her nails? Mum liked the 30sec videos my son would send her. I know she watched them over and over to cheer herself. Flowers and cards? All the very best.

#24 Fennel Salad

Posted 21 March 2017 - 06:17 AM

Quiet sighs from my corner, and what mollysky said.

#25 Riotproof

Posted 21 March 2017 - 07:09 AM

I am so sorry about your mum.

I just wanted to second the idea about videos. I was hospitalized over Christmas once and the only thing that kept me remotely cheerful was watching videos of my son. She might like videos of your kids telling her about their  day or doing sport or something.


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