Hi Andrew,

I am glad to hear that you have spoken to your manager and someone from HR. It is so good to see your boss supporting you. So often we hear of companies who, at tough times like this, show no compassion or return for the loyalty you’ve shown whilst working with them. I’m sure that an additional  8 weeks would be very helpful at this stage. Even if you don’t take it immediately, it is reassuring to know that it is there when you need it.

This is just a thought, but have you considered bringing a bed downstairs and getting welfare to supply a commode? – Not ideal, I know, but it could be better than the alternative for your mum. How did the welfare visit go today? I am glad to hear that your brother has been chasing them up this week.

I hope that you find your GP helpful next week.

Thinking of you all.

Kind regards,

Jolamine

Hi Jolamine

Well it was a difficult an emotional evening yesterday. The welfare officer who visited while very nice man took a lot of my mums anger as he instructed her he wasn't even aware she had been discharged from the hospice and was surprised to be contacted by my brother to say she had. 

He was also surprised that no contengencies were put in place for coming home. Then came the further bad news, within his remit he couldn't provide a stairlift for my mum all he could offer is the hand rail installation but my mum thinks/knows now that she just doesn't have the leg strength to do the stairs so he approached about the bed downstairs and commode which set my mum on fire as she's wholeheartedly against that idea, She cared many many years ago for a close neighbour towards her end and I think she doesn't want to end up that same way she wants to keep her dignity and go to bed upstairs every night.

So after the visit ended, my dad myself and my brother chatted with her and discussed our only option which is now to perhaps purchase/rent a lift. I found a local family run business and they visited last night and gave a free estimate. My dad/mum seemed pleased with the costing (they expected much more expensive) than it actually would be an installation could be as soon as Monday. So its now still up for consideration. 

I'm hoping my mum goes for the chair as wasting time chasing one from the government could be lengthy an we don't have the luxury of time. 

thanks 

Hi Andrew,

It just shows how easily poor communication can impinge on the care of somebody who is as ill as your mum. You would think that everything should be in place, when she’d been in the hospice beforehand. It doesn’t sound as if the social worker can do much for you just now. It is unlikely that your mum will rely on a handrail, when she has lost her confidence.

I can understand how she doesn’t want to move a bed downstairs and use a commode, particularly when she has already nursed her neighbour at end stage. We all have our pride and, you don’t want to take that away from her. You are right in saying that you don’t have the luxury of time, so waiting on a lift from the Council, might never come to pass, or could come too late. If you can afford a stair lift and can get it fitted quickly, this is probably the ideal solution. It is a lot of money to spend, when she possibly won’t use it for that long, but it is the one piece of equipment which should make a big difference to her.

I hope that you can get this fitted by Monday. Have you asked the company whether they have any pre-owned chair-lifts to offer? This might reduce the cost for your parents. I understand that they change hands quite frequently, as people, want rid of them, as soon as they no longer have a use for them.

Kind regards,

Jolamine

Hi again 

thankfully my mum has opted ot go for the chair-lift. It will be fitted Monday, so hopefully this will make a big change for her quality of life at home. They did get the choice of some refurbished ones but opted for brand new at a reasonable and affordable price. The point I made to my mum as well to reassure her some is that it won't go to waste as my dad is 71 and has a history of heart trouble so the lift can be used by him as well going forward. 

Just need to get the approaching weekend over us and get the lift installed and we can somewhat hit the reset button on her time back home and see if things can get better for her for whatever  time we have left. 

thanks 

Hi 

installation went well Monday an my mums brother also installed some helpful rails on the landing for travelling between bedroom an toilet. Unfortunately my mums stomach has swollen up again with fluid an it’s leaving her really tired an short of breath. We’re waiting on the hospital calling her back to drain the fluid again an leave in a valve so nurses can drain it from home. 

I ended up taking this week off from work sick to (1) look after myself but (2) help my dad an spend more time with my Mum. I went down today an cleaned the house for them bathrooms etc just to feel like I’m useful. I haven’t decided yet if I’m gonna stretch my time off further with a doctors line I don’t know what to do or what’s best. 

Thanks 

Hi Andrew,

I’m glad to hear that the installation went well and hope that your mum likes it. The hand rails that her brother has installed should be a real help to her too. Does she use a stick or a zimmer? These can also stabilise her and are available free of charge.

I am sorry to hear that the fluid is building up again and causing her distress. It is a good idea to get a valve inserted to allow the nurses do this in the future, as it sounds as if it is going to be a regular occurrence. I’m sure that you feel better, having had a chance to clean your parent’s home. We often feel frustrated by how little we can do to help, but this will have made a big difference to all of you.

Only you can decide whether or not to take more time off – just remember that you may need more time towards the end, so try to leave some by for that. I hope that you feel better having had this week off.

Let’s hope that the hospital get back to you soon and get rid of the fluid build -up for your mum.

Kind regards,

Jolamine xx