Hospice or home... this is coming close

HI Sparkles 123

sorry to hear things have taken a downward turn. Life really is too cruel.

I can only speak from our personal experience but you will know when the time is right. Have you been introduced to your local hospice team? If not, I'd ask your GP to put you in touch. In our case we were handed off into the local palliative care teams in March 2023 and it was the best thing that could have happened. With one conversation one of the community nurses drew a definitive line in the sand for us and it meant G made the decisions for himself.  She asked 3 questions (apologies if these sound harsh)

Where do you want to die? (G answered hospice)

At what point do you want to go into the hospice? (G answered when he could no longer do his own personal care)

Do you want resuscitated if you take a turn for the worse?( G answered no)

Those 3 questions gave us all a framework to work around. In the end, he was able to be at home until 5 days before he passed.

Everyone's situation is unique here so there is no one stop answer I'm afraid. You also have to factor in what you can cope with too. Hard as it is, you have to be a wee bit selfish here too perhaps.

I hope this has helped a little. It's such a hard conversation to have but done right, you only need to have it once. 

Sending you a huge virtual hug and lots of strength. You're doing an  amazing job caring for him so don't be too hard on your wee self here. This is a tough emotional journey for all involved.

love n hugs

Wee Me xx

Hi Wee Me, 

Thank you always for continue to actively share your experience and knowledge with us, through this cruel journey you and your family has been through.  I wish I could do the same when my time comes.  You are strong. 

I went in circles this week, so did his mother. Bring him home! No, hospice to ensure best care! No, he's not ready for hospice! What is he suffers at home? You get the sense but after a week of running circles, your right. This means - time is not right for hospice yet, we will know when it's time.  We had a little scare when he was all slouchy and non-responsive for a few days, but upp-ing 2mg of dexa seems to be the magic drug (thank god) so he's sprung back up.  

He is able to eat, chew, drink liquids, engage in convos again this week, so yes I will work with the palliative care team, bring him home, and until those final final days come - then to hospice. 

G spend March-Oct mostly at home right? That's amazing.

The problem with my ex partner is - the doctor has deem him incapable of making these decisions on his own for a couple months now :( but today I repeated asked him (on his good responsive day) , are you happy, okay with how things are, comfortable? His answer was yes.  He was able to tell me, if he can't swallow anymore - then there is no point of going on.  Is that my answer...?

Hi Sparkles 123

My experience is almost the same as Wee Me. My husband and I discussed the hospice for his last few days or if I couldn't cope at home but the palliative care team were amazing. Once he was unable to weight bear the hospice at home team took over and came in three times a day  I was able to be his wife and not his carer. Over three weeks he just slowed down and slept more and more and did not communicate anymore. We had the just in case medication at home and once he couldn't swallow his meds anymore the syringe driver took over. I had to call the fast response team a few times at night as he started fitting but they came out straight away and upped his meds in the syringe. He was pain free so I decided that as he was so comfortable I would prefer him to pass away at home but I would have had no hesitation in going to the hospice if he needed it. What I am saying is with the support of the hospice team you will decide what is best and what he wants. It is an emotional rollercoaster but you will be amazed what you can face.

Sulubee

Hi Sulubee, 

Thank you so much for sharing your these final experiences with me also. It's such a hard topic, to speak about... I really appreciate all of your responses to me. 

Yes, we are slowly starting to speak with the palliative/hospice team members now and getting answers, bit by bit.  I hope our system here in Canada will be similar, and the response team will arrive quickly (if we are home) because that is my no. 1 fear for the tough days, if he was to stay home. I don't want him in pain or any discomfort, he's been through enough. 

Thank you for the courage. I will continue to do my best to face this rollercoaster weeks to come and protect him to my best. 

Can I ask something else... How long after they stop swallowing, do they last? (given they all share the same brain disease) 

For my husband with GBM it was only 7 hours. But won’t be the same for everyone. Hope I’m not in bother telling you how short his time was but it’s the truth. You are doing a wonderful job. 

For my husband it was almost a week but he was sleeping all the time. I gave him mouthcare but he didn't really respond. 

Hi Hebe1,

Thank you so much for this.  In my own world, was thinking a couple days at most also...  I think when he is unable to swallow, I really want him to be in a better place, the world is no longer for him.  Thanks for the support.  Means so much. 

I am adding replies to myself by the hour, we all go through this sometimes right. 

The neurosurgeon suspects he won't be in too much pain during the final days - due to the location of the tumor, he is loosing consciousness and awareness... so if he is unaware of everything, he should not feel too much, I hope?

Sulubee - That one week must of felt like eternity... I am so sorry to even of asked. HUGs.  My ex had a down couple days being non-responsive and sleeping 22 hours a day. It is scary but he bounced back, though I know it's going to happen again and I must be prepared he may not bounce back the next time.