Overwhelmed!

Definitely take advantage of the time to rest and recuperate.  They are precious minutes/hours to regain a little energy or just sit and let go for a short time whilst your husband is being cared for.

When my husband was rushed in via A&E last December for a third time we were well supported by Hospital at home. It only lasted about 10 days but I found they had time to listen and were a real.comfort to me. 

Do keep stressing to the medical folk that you need help and support. X

Things have hugely deteriorated here as well - yesterday my husband couldn't get out of bed, his chest was crackling like mad - I made a drs appointment they phoned and confirmed someone would come out - in the meantime he couldn't get to the toilet and wet himself, then I had to get him a glass to use, then he needed to open his bowels, it took me 45 minutes to support him getting up and to the bathroom - I changed the bedding whilst he was on the toilet - the GP arrived and prescribed him a stronger course of antibiotics - he told me to contact the palliative care team and tell them he'd gone further downhill since weekend and Monday.

They came out - one of the nurses was the same nurse who had come at the weekend - he told me that based on how much he'd deteriorated in a few days, his breathing and his appearance he felt he was approaching his final hours.

So he set up the emergency meds to be injected and made referrals to hospice at home, carers and district nurses.

It's been non stop since then - all relatives came round and a constant influx of professionals and phone calls.

In the end, family went home and my husband's breathing improved (they felt it was secretions that happen at end of life rather than a chest infection - told me not to bother with medication anymore as he's struggle to take it and may choke - so they'd give him everything via a driver).

Carers started this morning and will come 4 times a day - hospice at home are on hand 7am -9pm then the 24 hours district nurses take over overnight.

They all said themselves that you go without any support then you get loads.  My husband's wishes (and mine) are to stay at home rather than go into hospice - we're going to try our best to do that but if he feels he wants to go into hospice or I feel it's too much, we'll both understand. It's beyond heartbreaking - especially as he can't communicate due to the voice loss made worse by breathlessness - so he's getting frustrated. Hope you get better support xx

This is so sad to read Andrea and Glyn’s symptoms were the same . I fully understand your wishes and take your time making the next decision. It’s such a helpless feeling, we want to give so much support even though we know what the outcome will be. I’m here for you and your feelings if you want to talk or scream or shout please reach out xx

Hi redandrea71, this sounds exactly like what happened with my husband, although he did get support for a few weeks before he got to that end of life stage. Like you say, constant visitors, but like you, I was determined to keep him at home as that was his wish and I was not going to deny him that unless I absolutely had to. 

His CHC funding came in the day he died. I was so glad to have an overnight nurse with me when he died as she did everything for me. 

I wish you every bit of strength at this really sh*t end of the journey, just keep talking when you want and are able xxx

Hi TraceyT, 

I get, completely, where you are. My husband is in a similar situation….no warning other than a back ache. Hospital tests revealed metastatic prostate cancer, spread to spinal cord, bones, lymph nodes. He can no longer walk or control bodily functions. Family and friends keep in touch by phone, text, but no one comes to help. I employ a care agency to help with toilet and dressing him. We have two carers twice a day and one at ‘tea time’. I do all the care in between and throughout the night. We have just too much money for social services to provide care. Please talk to your husband’s palliative care team about how you are feeling. I am not coping well, I feel alone, exhausted and overwrought by all this. Just having carers pop in helps a bit so please explore this option. I worked in a similar field to you and still need help. I stopped working to look after my husband. Please make time for yourself and if needs be pay for help. Money doesn’t mean so much when our health is a stake. Sending you hugs. 

I'm not quite at your situation but metastic prostate cancer diagnosed less than 12 months ago. He's on HT, had chemo and RT. He has responded to RT as expected. He's just so exhausted and lots of pain in ribs, back, hip, pelvis and back. Just had RT to ribs which of course has side effects. We are just about managing the pain relief and supported by phone from local hospice. I'm not sure how much more medics can do or offer. It's just me too.

Take care. Sending you big hugs xx

My husband quietly and peacefully passed away around 10:30am this morning (Friday). Sadly I'd been downstairs since 10am as 2 sets of relatives arrived - the first at 10am and the next at 10:10am & I was kept downstairs updating them. His Dad (who he wasn't particularly close to and who hasn't really been there for him over the past 2 years up until the last 2 days) went up to see him around 10:25 and he was still breathing and briefly woke up then - when I next went up at 10:45 he'd gone.

He had a peaceful night after a scare between 10pm - 11:30pm Thursday night when paramedics had to come out as he fell out of bed and his blood pressure, oxygen and blood sugars were all very low. The nurses came out but after the paramedics gave him oxygen and glucose and the nurses gave him oxycodone and a strong anelgesic/relaxant, he stabilised and was relaxed and slept well. His Dad said he briefly woke up when he went in to see him, then went back to sleep, so in the 15 mins between his Dad coming down and me going up, I'm fairly sure he drifted off whilst sleeping 

I'm beyond devastated and heartbroken - it hasn't fully sunk in yet and I feel a bit numb - but I already miss him so, so much and just can't imagine my life without him but need to be strong for our son, my older children from a previous marriage and his daughter from a previous marriage.

It's just so hard and so cruel - I hate cancer - it's robbed him, us, our children and our family of the future we should have had (he was only 53). I'm just so upset 

I'm so sorry this cruel disease took your husband from you and your family as well - it's so, so unfair - sending you hugs x

My husband passed away between 10:30 - 10:40 am this morning (Friday) - I'm devastated x

Redandrea71, I am so sorry to read this and yes your head will be everywhere. It is devastating. You dont have to be strong, you have to be you.

When you are ready, there is a bereaved spouse or partner group, there are a few of us there, we are a friendly and supportive bunch, and we all get it. Its a good place to let out your feelings. 

Love to you xx