Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

@CanadianJohn I couldn’t have coped without the nigh cover. I’m feeling exhausted now, the thought of covering all night would be too much. Nobody has called to update me but I rang the pharmacy and Lorazopam has been prescribed by the GP today, so I will collect this before tonight and at least I know we have something to help if he gets agitated again tonight.
Apparently, waking night cover is very expensive but probably less than Hospice cover? Though I think most Hospices are charities & the Continuing Health is funded by the NHS.

@Timesnearlyup I should have made it clear we are in Canada.

In England, people complain about the decline of the NHS... we didn't even have a NHS to start declining from!

Our relatives in the US have observed we are somewhere in the middle between the NHS cradle-to-grave (in therory), and the US system of take-care-of yourself-by-yourself.

And before any pedants/purists jump on me, I know that in Canada health care is a provincial responsibility, and in the US is a state responsibility. Not national in either country.

@CanadianJohn the support sounds fairly similar to here, so I didn’t realise you were in Canada, despite the name.
I do hope the Nurse was helpful and you manage to get some rest tonight. I’m not sure how palliative/healthcare is funded in Canada but I the services do sound similar.
I’m hoping for a better night tonight & will keep communication with my sister in law very limited from now on

My DH parents should be in the stately homes thread ! I just sent them what's app with info and ignored them the rest of the time. We couldn't get the night nurses in in time so I had to do it - was really hard as he used to stir about 5 am every day 😭😭.

You must must remember that you need to look after you in all of this - if that means taking a break, hospice, screaming, ignoring the phone then so be it.

My DH was in the hospice for a month for pain relief as nothing / no one else could actually do anything. He managed to get home and had a 'good' couple of days at home before being admitted to the hospital - once there he quickly went into a coma and we managed to get him home to pass - he was here for 2 days with district nurses coming in and giving him his meds via a syringe driver. For us that was the best option, he hated hospitals and we've an ASD young adult (was just 18) so it gave him time to come to terms with him and he chatted to him. We came home with a care package of 4 visits a day but I stood them down on the first day when they wanted to wash and move him - DH started moaning as they did so I told them to leave him alone, we knew he only had a couple of days max so I pointed out to them he didn't 'need' a wash or sheets changing etc. When he went it was heartbreaking and relieving at the same time, he would have absolutely hated being helpless.

Thank you for sharing you final weeks/days @notapizzaeater How are you now? I spend days crying, day’s thinking it’s not so bad but other times wishing for it to be over. It’s so relentless and tiring. I wait the Carers but don’t really want/need them most of the time & dh doesn’t want to be washed 😕. It’s devastating and heartbreaking how someone can survived in this state for so long.
I’m hoping tonight will be ok.
sending thanks to everyone on this thread as it does help to vent x

@Timesnearlyup we're 3 years in - we have more good days than bad days. We talk about him all the time. It seems like only a few weeks ago but then in the same breathe feels a lifetime ago.

I'm taking my 13 year old cat to the vets tomorrow and 'might' be having to make 'the decision' - it's times like this I miss him even though in reality it would have been me making the decision.

I know it's hard but actually him being so bad was cathartic as I knew he'd have wanted to go.

Unmumsnetty (((hugs))) for everyone who needs one

@notapizzaeater sorry to hear about your cat😕. I’m going to totally struggle with the garden. Just ignoring it for now but the grass is so long and I have never done any gardening. It is dh’s passion. Although he is still here, in so many ways he’s already gone. Just had a really tricky 5 mins trying to get him to take some pills, he’s so confused and I could see he was getting agitated. The Carer is late too & still not here, due at 8 but I’m having a glass of wine & will switch off when they arrive!

Sending hugs, strength and love to all of us going through impossibly tough times, especially @CanadianJohn and @Timesnearlyup but also anyone following who hasn't posted yet.

Still ticking, here. The palliative care doctor came today, and presribed a urinary catheter, which was fitted this afternoon. That eases the task of the caregivers. Also, because my wife cannot swallow, she now has an infusion device - I forget the exact term. The doc also increased the dose of morphine and anti-delirium medication.

So, bed-bound, unable to speak, swallow, eat or drink, the doc thinks she might last a couple more days. I can empathise with caregivers who "accidently" give an overdose of morphine.

@CanadianJohn I’m sorry to hear your latest update but hope the extra interventions help take some of the responsibility from you.
Dh had a relatively good day but things seem to ramp up in the evening. He spent almost 3 hours coughing large amounts of flem but can’t sit up properly so it was quite nerve wracking. The Carer arrived half way through and I got advice from the Nursing team. We now have Lorazapam in pill form so I was advised to give him some with the morphine and he seemed to settle. I have had some sleep. Ironically his sister messaged as it was all happening and advised, he probably has a cold, give him some decongestant 😕

Just a cold!!! Glad you got some sleep @Timesnearlyup

Sounds horrible for you all, hope the drugs help.

@Timesnearlyup best thing I did was get a young chappy to mow the lawn in the spring / summer - it was one less thing to do - he started whilst DH was ill as I begrudged spending the time away from him.

Just to let you know that my beloved wife Pamela died today, at the age of 82, of cancer.

She had no pain at any time, and died at home, as she wished.

Just 30 days from diagnosis to death.

John

I’m so sorry. I lost my dh to cancer too and it’s so painful.

Condolences @CanadianJohn 30 days it must come as such a shock. Thanks for your generosity in sharing your experience so far. I'm sure there are plenty here who can relate unfortunately.

@CanadianJohn you did so well to keep her pain free, at home. I hope you can find some pride and consolation in that.

Please keep posting, there are lots of us on here who found the next stage hard too.

@CanadianJohn So sorry to hear this. I’m glad she wasn’t in pain. It must be a great shock for you. Thank you for letting us know.

My dh is getting worse each day, unable to eat or drink without coughing now. Our son is heading home, it’s a long trip and is due to get here on Monday morning

@CanadianJohnSo sorry to hear this news

@CanadianJohn I'm so sorry to hear this.

@CanadianJohn ((hugs)) glad she passed peacefully Free from pain .

@Timesnearlyup hope your sons journey is ok and he gets here, a horrible time for you all xx

@Timesnearlyup wishing you both a peaceful day, hope your son is able to help and comfort you when he arrives.

We’ve had several ups and downs over the last few days. I had to call Nurses for injections as dh has been struggling, barely eating but when he does, he’s been coughing for hours and bringing up lots of flem. Happened again last night. We’ve now been told, nothing more to be given orally 😢. It’s heartbreaking, as he was asking for food/drinks. He now has a catheter & syringe pump with medication.
Our son made it back on Monday and thankfully got to spend a bit of time with him before this latest downturn. Now that I have both ds’s at home, I am going to do my best to keep him here, as it’s what he really wants, though not what I wanted.
His sister has been second guessing a lot again but I’m not letting it get to me now. If she really wanted to be involved, she could have come herself.
I don’t think we have many days left now.

I’m sorry, don’t let her get to you. I’m glad your all together.