Reluctant to have a hospital bed at home

Hi Salou,

Im afraid I have no advice at all but just reaching out to say I have the same concerns. My husband (52) has stage 4 stomach cancer and is declining quite quickly now. He is at home and although he currently sleeps in our bed he is getting slower and also finds the stairs quite tough now. His future care is very much in my mind also.

We Ive never had that conversation and I don’t think he wants to but having been with him for 23 years I know him well enough to know he would not want to go into a hospital or anywhere else for care and would want to be at home. I feel the same, he is my husband and I want to be the one to care for him, whatever that may involve in the future. But I have no idea how I get any help in the home and what we would be entitled to.

So I share your worries and hope that you get the help and advice that you need. Maybe you can share any advice if you do get any yourself!

Hi Salou,

my husband has a glioblsstoma and his mobility has recently deteriorated rapidly. We don’t have children and live in a (first floor) flat, so our circumstances are differnet, however we too had to recently had to get some equipment. Luckily we had a king size bed - I measured the space and worked out that the profiling bed and a single bed next to it would take up the same space plus a couple of inches in width so it’s tight, but I’m still sleeping next to him. We had to get rid of one of our bedside tables and various other bits hat were in the bedroom. The profiling bed can move if we need to get someone on either side. We don’t have carers yet, and they might be looking for a bit more space when they do start, but I am managing to help him with the current set up. It might be worth looking at he space you have and seeing what you can do?

HI Salou

like bramblejoo, I share your worries. My husband has a glioblastoma that was diagnosed at the end of August, Everything's moved so fast, this isn't something I've given a huge amount of thought to. I do panic at the thought of waking up next him and discovering that he's died in his sleep. Been a few nightmares around that and many interrupted nights sleep as I check he's still breathing.

He's already said he doesn't want to go back into hospital again and I have no idea how receptive he would be to having a hospital bed in the house in time if it was advised. He's a stubborn bugger so I suspect I can  guess his reaction if that's ever suggested. I'll cross that bridge when I come to it.

I guess all you can do is be led by your individual circumstances and listen to what your husband wants too. Kids are resilient so if it comes to it and your family room is rearranged I'm pretty sure they'll understand and accept it. It's hard on kids and they are still quite young but don't discount asking their thoughts too. 

Hang in there.

Big hugs

xx

Hi Salou, I’m so sorry you’re having to think and plan right now, it’s the last thing that you need. I guess it’s something we all will have to think about, sooner or later. 

My husband has a community nurse that comes once per week for bloods and to flush his pick line, she  said if we wanted a hospital bed to let her know. My understanding is that a GP is the first port of call, they then contact district/community nurses who can arrange equipment for use at home, they can also contact Macmillan or Marie Curie, who provide care at home. Perhaps as nicAitch suggests you measure the space or perhaps if you contact your GP a district/community nurse could visit and suggest something that would work, they have the experience.  

I sincerely hope you get the help and support you need, all my best Budge

Hello, 

I am another one sharing your worries and like you i do not like people coming in the house and like wee me i have been nervously checking he is still breathing (weirdly enough, he was a super snorer and now ‘sleeps’ silently, so now i miss that thunderous but how reassuring noise).

The kids are probably game for any adaptation we might need to make, but it all seems so complicated.

I must say i am myself very spooked by the idea of sleeping in the bed/room he might die in and forever associating that room with sickness. I am hoping this is something i will get over as i do not want to make him feel worse than he does already.

sorry you are feeling frustrated at your situation  It is very hard to address  "the elephant in the room " and have a conversation about it. Our GP came and discussed end of life arrangements which was a huge shock  to husband but a relief to me as it is now in the open. he for some reason kept saying he had 5 to 10 years left  but in fact it is now months which means we were referred to local hospice who have organised all sorts of things.your GP should help with referrals as should your oncologist.  good luck 

stay strong  

Hi all,

Well I thought I’d update you all on latest with us. After I had emailed our hospital Macmillan nurse with concerns recently about how to cope at home she called us today and spoke to both of us about referring to hospice. After the initial shock (especially from my husband) he actually agreed after she explained that they can help at home with symptoms and pain control. It’s not all about end of life and we can have as much or as little support from them as we want/need. They just make staying at home easier.

I personally feel so relieved that he’s agreed to this and although it’s another scary step it’s what we probably need now. 

I hope that might help anyone else who is having similar worries x

Hi Salou, things may have moved on since your post and I hope you and your husband are ok. I care for my husband (it is just the two of us) and after falls and a rapid drop in ability after radiation treatment, our home has changed.  The hospital bed is in the living room, our double bed is dismantled and stored with a friend, I got rid of a bedside table and the bedroom is now a sitting room and storeroom for all the medication with lists etc of what we need - this gives a new place to sit, and is helpful for carers taking a break as well.  I was ashamed of the dust under the bed when they moved it though....

I am sleeping on a small single bed off the living room - I bought last year and very glad I did so - moving out of the double bed was hard but he was in a lot of pain, and I didn't realise this was probably our last night in the same bed.  BUT the hospital bed is wonderful. The movement is so helpful when he needs personal care, he can adjust it for sleeping or sitting up when he is too weak to sit up unaided, and yes it looked odd for a day or two, but now (1 week on) I don't really see it.  It feels safer than the double bed too.  District nurses and the hospice have been wonderful.  and the mattress is much better for avoiding pressure which is really important too.  I am sorry for the changes in your lives (and mine) - and as for having people in your home, it is not easy but try to see it as positive and that new people coming into your lives can be a blessing. If I was rich and used to having "staff" at home it would not be such a big thing so this was a big adjustment for me having people coming and going.  I am trying hard to remember that people who are carers have to get used to new homes and new people all the time while delivering difficult tasks (in PPE!) And I am lucky to have this help. 

Basically, people adapt, try to make the most of everything that will help - my husband wanted to be at home and that makes things clear for me.  I do wish you all the best - I was proud of our little home and keeping things normal, but now its changed I am still proud that my husband is well looked after in his home - wishing you and your family all the best.