Looking for ideas- placing the hospital bed into the living room

Hi Kelly,

ive not had your experience but I do have experience as a carer.

In my local authority they offer grants to install downstairs showers / wet rooms, it can sometimes take a while but it would be worth the call to see if it's available. I see that someone else wrote that your husband might get priority, that could speed things along.  We were given equipment pretty much the day we asked for it and we got a frame for over the toilet which helps with getting up and down, a commode for when my gran couldn't make it to the loo, it was easier taking it to her than the other way around. They also brought us a walker and a wheeled tray. The OT's are great though, they will match the equipment to your needs. We also got an alert system (community alarm) installed with a falls detector and a bracelet and necklet with a call button, it was around £2 a month but gave me the peace of mind to leave the house. They can set up the alert system to ring when pills are due and all sorts of other things. Our chemist will prepare the weeks pills in blister packs (I found this out after years of filling pill boxes). I bought a light weight cup for drinking and light weight plates for when she couldn't manage real plates.

The wet floor shower is great and with wet wall panels you could have one fitted in a couple of days. We got grab rails installed and got a good shower chair. 

In terms of the bed I'd say do what feels right for your own circumstances, you could maybe screen or curtain an area off so it feels more private? 

P.s. I forgot to add that I bought a waterproof mattress protector (they are fabric now, not the old horrible rubber) then on top of that I had Tena pads under the sheet, you can buy them in packs and they are big squares, they saved me changing the whole bed after accidents, I mostly just needed to do the sheets.

Lots of love

xxx

Thank you alys7258 for your comments. 

My husband’s condition has deteriorated in the last few weeks,

he is finding it difficult to get up.

i really  do hope that his condition stabilises soon. 

Kelly

Thankyou Aria, very helpful comments.

Kelly

A bit late offering advice and I am so sorry that things progressed faster than expected. 

We too thought we had more time to adjust to our situation but it seems that we were always 2 steps ahead of the equipment arriving....usually next day or so. The shower stool used once, the commode.....never. Hospital Bed a god send. Takes up most of living room so we can access both sides. Furniture religated to shed. I have a single bed downstairs too as he wakes I the night to have a pee.

for us being upstairs was too isolating. Downstairs I can be in and out, in the kitchen or frequent sorties into the garden for a bit of fresh air. 

I hope things are manageable for you and lots of help forthcoming.

Kathy x

Hi Kathy

I think I have been in denial. I know things can get ugly pretty fast. There are lot of people on these forums who have benefited from Immunotherapy but my husband has been rather unlucky. 

He has become weaker within last 2 weeks, gets tired easily. I just can’t cope with the physical change in him.  I am struggling!

Kelly

Hi Dolphin. We seem to be in a similar situation. 2 weeks ago Paul was able to get to the bathroom., and manage the stairs...a bit wobbly so I asked the Hospice if they could supply a walking frame. They came that afternoon. A physiotherapist brought it and spent over an hour talking about DNR, end of life care, medication options. After she left I freaked out a bit. Had she seen something in him that I hadn't.? 

.Seems she did. 2 weeks ago I thought that we would jog along,  not great, but manageable, (thinking we might make it to October) he could sit up in bed, use his phone and spent most of his time selling his garage contents on eBay. I wasn't expecting such a rapid decline in him. Phone and laptop abandoned a week ago. Sleeps 80% of the day, no food, and just about sips water......if I hold the glass for him.  The man I knew as my husband started to disappear 6 months ago. I hardly recognise him now. In fact I have pinned photos of him around the house to remind us all how things were. I don't want these days to be our lasting memory.

i didn't have the heart to tell you not to bother with building work but Alys pretty much said it all. When you get to the hospital bed stage it's time to reign in all expectations

I have resisted asking how long, but in my heart I think I know it is only a matter of weeks and not at all surprised if just  days. This morning wondering if we'll make it to the weekend.

This is so tough, but somehow we find the strength from somewhere to battle through. 

Sadly we are not alone and I have had good advice and preparation from those who have gone through this and out the other side.

Love. Kathy X

I sooooo needed to read this today. 
I know it’s from four years ago but absolutely what I needed today 

M 

I am so sorry to hear you are going through this and it scares me to think I have it to come , I have seen a decline in my husband the last couple of weeks and today he has decided not to go ahead with radiotherapy on the brain and just have chest radiotherapy it’s a club I never wanted to be a member of it’s just so hard and painful and at times you do feel as though you are the only family going through it.. life is cruel I’m sending you a big hug xx

Dear Jaw 1 

this old thread of posts from four years ago has been very very helpful to me. I’ve seen such a rapid decline that I even try to remember a week ago and it feels like another era. The reality which people describe, the mundane details though sad and horrible really do tell it like it is. I cannot be in denial. I cleared the living room today and now feel that I’m ready for a bed to be in there. Im becoming better at the reality of this process of dying. It helps that my husband has grown calmer. 
I send you a hug too through the virtual world. 
M 

Thank you all for the helpful ideas. I am also currently engaged in remodeling a room for my father.