Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

Hospice care ; what is the right thing to do. And when.

Buttercup2017
Posted by

My MIL's left leg is already weak, yesterday she lost 'power' in both legs.  Currently in hospital.  We could not lift her up, it was like dead weight   Before she could at least go from room to room by herself with Zimmer frame and to toilet. Yesterday evening she could not use her legs to stand up.  Not sure if this is the start of the degeneration from the cancer: delayed effects of radiotherapy (finished her course of six a few weeks ago) or something else.   Otherwise she is eating and talking as normal.   What have you done in similar situation?  Not sure how long she will be in Hospital for but assuming OT will have to assess her.  

Moon12
Posted by

Hi Buttercup, 

Is your MIL on steroids?  If so, how much?

Sounds like in a similar situation to my Dad. Last week he could only get around if we both linked him 

After 8mg of steroids,  a few days later he can get around in the house with a stick! Outside, we now have a wheelchair x

Nicole74
Posted by

Hi there,

All i can say is sometimes my Dad's body (legs) is a dead weight n other times he is better... it changes day to day. But his curiosity at why and positiveness seems to make a dufference. Even when he struggles standibg up or knowing where to go if we are his support n cheerleaders he seems to get there right now but know that is not forever. The dead legs n rolling eyes are hard. All we can do is love n support..

Thinking of you n yours


N


Xxx

TFstar
Posted by

Hi there,

Just had another "dead leg moment" with my mam.. bless her it comes and goes. I just suggest to her "how about we just take a seat for a minute or so and reboot those legs of yours" and as if by magic she's up again using her zimmer frame moving around the house. Its so frustrating for her and me aswell to see happening! I notice the knees start wobbling while standing and within seconds her legs just dont want to do as they're told! :-( 

Victoria 

X

Nicole74
Posted by

It is so strange how legs go dead and cant figure out what to do then a little later Dad is strolling around our garden. Figure no rhyme or reason to it. Also becoming obvious day tk day is different. Thinking of you all and your lived ones going through this horrid disease x

Buttercup2017
Posted by

Unfortunately, it seems like the cancer has grown.  She had debulking a couple months ago and radiotherapy and it is now back to 5cm-6cm.  She is still in hospital and it has gone from 12-18 month prognosis, to 2-3 months :-(. She is still in hospital and has hardly any strength in her left arm and legs. She is still chatting away and bored in Hospital...not sure where we go from here....

Buttercup2017
Posted by

They have increased steroids from 2g a day to 4g twice a day, not sure if it will make a difference at this stage but I hoped it would have before the doctors said what they did..

Moon12
Posted by

Hi Buttercup 

Thinking of you, how is your Mil getting on?  

Have the increased steroids helped? Can she come home? X

Buttercup2017
Posted by

Hi  - thank you for thinking of us.


She was discharged on Friday - she is able to move from room to room with a zimmer frame, once she is assisted to be on her feet.  Not sure if it was the steroids that helped this as she was unable to walk at all in hospital to begin with.  The sons thought they would do a trial run at home for us and see how she felt etc.

She gets tired very easily but is eating and talking fine.  Her left arm is considerably weaker.  She is unable to use the downstairs toilet now as it is too small - the carers come 4 x a day and assist with the commode etc.  It is some adjustment - I haven't had to help her yet.  My father in law sleeps in the same room as her and he is too proud to ask for help at the moment and seems to be able to help her during the night.

We had a lot of guests over the weekend - not sure if she is in the mood for it for all to be honest but she literally sits and watches TV, eats/sleeps.   She slept a lot on Saturday. Weaker than before.

Not sure how to take it all!

Buttercup2017
Posted by

We had a lot of guests and it doesn't help things when people - who probably mean well - say to her "Oh you have swollen up" - duh she has cancer and has had radiotherapy!  People are so euggghhh sometimes.


MIL and I used to manage the house in terms of cleaning and cooking - and am now fitting in everything in between working and sleeping!

Moon12
Posted by

Hi Buttercup

Yes, same as my Dad.  He can now potter around the house. We've even taken him out in a wheelchair - hired one from Red Cross as still waiting NHS one!  Soon got used to pushing him around a countryside lake, he enjoyed the fresh air & getting out the house.  Do you have a wheelchair for MIL?

How old are you, if you don't mind me asking?  I'm 42, 2 young boys & work 4 days a week so its hard.  I do get a break as i'm 20 minutes away so can't really visit during the week.  Actually thinking as he get's more ill of taking unpaid leave.  We shall see.

Have a good day x

Buttercup2017
Posted by

Hi  - lovely to hear that your dad is doing better and making the most of it.

MIL has a NHS wheelchair now - but tbh she is not that upbeat about going out.  When the weather is nice, someone does take her out for a stroll.  We have used the wheelchair to make her sit near the conservatory too.  She is using a commode at the moment because of her mobility issues (I think she could use our downstairs toilet which she used too but it is too small for another person to go in and support her.  We have applied for a community bus pass to see if she could take on some activities at some centres nearby...but not sure if that would be up her street.

She doesn't do much all day - was thinking of getting her an adult colouring book and maybe even a sewing a pattern kit.  We are an extended family living together - so she always has someone and we have a lot of guests.  When she goes out for a stroll, it seems to take it out of her, so my idea of a family retreat is not being welcomed! The idea of using a bathroom elsewhere is not that easy for her.  I don't know how to improve her spirits!

I am 36 and have one kid - but I am in the office everyday - albeit some days are shorter than others.

Moon12
Posted by

Community bus pass sound worth investigating.  Thanks.  At least the weather is improving now so even sitting in the garden is good for their general wellbeing! x

Buttercup2017
Posted by

How is it going Moon12.


My MIL has extremely swollen legs/feet at the moment - she has always suffered water retention but they have really ballooned - guess it is the meds.  Not very mobile still - the carer situation is a blessing.  It is getting more and more difficult to get her up on her feet for her to use the frame to go to her bedroom.

We were thinking of using the community bus to take her for a shower at the Leisure Centre - we went by car last time but it was v difficult.  But she doesn't seem to like the idea of getting out.  I keep asking hubby to see if we can get a ramp to help her get into the garden but not sure if he has chased enough!

Moon12
Posted by

Hi Buttercup17

Good to catch up.


My Dad is doing well at the mo - steroids helping alot. We are taking him on a trip to the Lakes at he weekend. Hoping to get him out as much as we can in his wheelchair.


Is your MIL on steroids?  Sure they would help her mobility.


Keep me posted x