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

Hello Kelly,

I’m sorry to hear about your situation. I hope you are holding up ok. 

In answer to your question, one thing that I did with my mother was to move everything upstairs. We had a tv aerial installed in her bedroom and moved the TV up there. I also made a kind of mini kitchen corner in my room so I could prep tea, coffee, toast and sandwiches etc. I also moved the microwave into my room so I could quickly heat the pads Mum used to keep her back pain at bay as well as zap any snacks she felt up to eating (jacket pots - we ate a lot of those). I then spent most of my time upstairs with her and behaved as if we were on the ground floor!  Mum was very much against spending all her time in bed so I also moved one of our armchairs up to her room so she could sit by the window. It was a bit of a squeeze but I just moved any unnecessary furniture into the spare room (dressing table and wardrobe).  The expense of putting in a tv aerial is considerably less than installing a shower room downstairs too. One advantage of this set up was that when Mum had guests she could go downstairs and relax as usual in the living room but if she wasn’t feeling up to meeting anyone, she could stay in bed upstairs and I could entertain downstairs.  I don’t know how you or your husband feel about such things but my mother was adamant that she would not turn the downstairs into a hospice room. She was very house proud and didn’t want to shock her friends with beds and commodes in full view as soon as they entered our house.

I hope this helps in some way.  Feel free to fire any more questions in my direction!

Big hugs to you 

Kate 

Hi ,

You might find some useful information about financial support here, for help with putting in a downstairs shower if you decide to go for that. Using the living room can make things a lot easier but it depends what you and your husband want to do. I don't know if you have seen this booklet which (pages 11 onwards) makes suggestions about caring upstairs/downstairs. I will page the other champions for further ideas.

Hugs,

Thanks Kate for your ideas and suggestions.

I would prefer him to be upstairs when the going

gets tough but he is insisting on setting himself up 

downstairs so we really don’t want to upset him, 

he can be very sensitive and moody to these issues.

He is sleeping  a lot and mostly he is knocked out 

with all this medication  he is taking. Maybe he fears that 

he will be isolated.  Bless him!

Kelly

Hello Kelly,

I’m glad you found the things I suggested useful. I can understand your husband’s worries as my mother had the same issues when she was at home.  She really didn’t like being left alone which is totally understandable.  It’s tough trying to balance practicality with your loved ones wishes.  My mother and I ended up being carried along by the current and wound up in the hospice but it was probably the best thing that could have happened as we got to spend a lot of time together without having to worry about food, medication, pain etc.  Do you have any palliative care nurses visiting you and your husband?  Maybe they could suggest a possible relocation upstairs to him when things get tough?  

Hugs

Kate 

Hi Kelly,

As promised I paged the other champions and the advice for downstairs help is that the Social Services can provide all that is needed as can the hospice with beds commodes etc and the District Nurse should be able to help with the washing part although not ideal but at least the person can feel refreshed. If there is local equipment bank a Chair can be provided for sitting in through the day and can be reclining as well if the person falls asleep in this.

There is a form called  DS1500 which the GP needs to do and then things can swing into action with benefits etc very quickly. I imagine this info is something that the Macmillan Line might give though so you might already know this.

Hugs,

Thankyou Kate,  you have offered some really good ideas and suggestions. 

My husband doesn’t want to stay upstairs during the daytime, he doesn’t  say much but I have a feeling he will feel isolated and rejected.

We will look at installing a shower room downstairs in the coming months.  We will just have to bear the expenses.

There is so much stress involved dealing/caring for your loved ones.

Kelly

Hi kelly

my husband 3 months ago was diagnosed with a grade 4 glioblastoma terminal brain tumour giving him 3-6 months. The Macmillan team were fantastic, supplying a commode,a rechargeable chair for the bath but the main reason I am replying I was referred to social services adult team and because he has a terminal illness he becomes priority. The occupational therapist (Mair) came along and there is a grant available for private housing which can be accessed within weeks. I have had a stairlift fitted within 4 weeks and it makes my husband feel he can get up and go back to bed whenever he needs. My sons are also on Facebook and found a rise and recline charge someone was giving away for free, it really has been a godsend when he is downstairs. Social services did say they could adjust our shower but as we have a bath then that was fine. During the day he uses a bottle downstairs, but anything else upstairs in the bathroom, before it was taking two people up and down, but it is much easier and a god send. I do hope this helps, please contact social services as the man surveying our house says they can fit them in a week and really worth it and No bills at a time you really need it

love to you

buddylyn

Thank you buddylyn .

I will contact the social services tomorrow to see what is available in my area and how fast they can deliver . 

Kelly

Hi Linda

Thankyou for the information. 

Kelly

I'm going to be brutaly honest here, sorry if it's hard to hear but I found the MacMillan people were very careful in what they said and therefore not that helpful. They have to go with the patients wishes, not always the best practical help.

There isn't time to get things like shower rooms built. You need things to help NOW. Plus how will you cope with the disruption of the building work? I imagine you have enough to deal with as it is. If your husband is anything like my Mother (I'm sorry I don't know his age etc) his health will changed day by day, as will his moods. Get all the help you can, get care people involved, get equipment, Make DN's aware. Get a stairlift (rent one, they can install in a week), get a proper cushion or chair (prevents horrible bed sores), get a hospital bed set up, upstairs with an air mattress. Install tv upstairs. He might not want it now but he will probably need it soon. Just please, please  be ready and sooner rather than later.

I wish someone had said this to me, I hope I would've listened. 

Laugh or Cry.