Hi Kerry,

A very warm welcome to our forum. I am so sorry to hear about your dad and can understand just how shell-shocked you must feel. There should be people on his care team who can help out with finding suitable accommodation. 

It is always a worrying time waiting for results, but I hope that they come through soon.

Please keep in touch and remember that we are always here for you.

Kind regards,

Jolamine xx

Thank you for taking the time to reply

we are struggleing to get any communication from anyone dad as full capacity which is making it hard for staff to tell us anything 

we need to plan his discharge and getting no support on how dads getting really frustrated and upset he does not understand what they are telling him for him to be able to explain it to us as a family nothing is making sense and no direction on where to turn for help 

Hi Kerry,

Has your dad thought about giving one of the family power of attorney?  It is often wise to have this in place as we get older. It doesn't have to be used until the person lacks the capacity to fend for themself, but can be used at any time. This would give you as a family more access to his medical details. This would be difficult to arrange while he is in hospital, as it has to be arranged by a solicitor.

However, your dad can make it known to his care team that he is happy for them to share his medical details with you and they will then be able to discuss things directly with you. Unfortunately, due to data protection legislation, staff cannot discuss his case without your dad's consent. You really need to know what is happening, before you can start to make plans for his discharge from hospital and this needs to be your first step. 

I have found that in order to get answers, you need to ask the right questions. This includes some awkward questions too. There are various facts that you'll need to know, such as what adjustments he might need in his home. Will he need nurses/carers coming in to attend to his bed sores, medication and general needs? We had carers coming in 4 times a day to tend to my mother-in-law, who was bed bound for six years. The practice and district nurses also visited occasionally. 

The hospital arranged for a hospital bed to be delivered to the house and provided a special matress to try to reduce her bed sores. The carers also moved her position regularly to reduce the pressure on particular areas. She was provided with incontinance pads, as she couldn't get out of bed and the carers changed these regularly. She was also prescribed build up foods, when her eating became difficult. Your dad may not need any permanent adaptations to the house. He may just need the bed to be brought downstairs.

The most difficult question is always 'How long does he have left?' Although nobody can give an accurate answer, the staff can give you a good estimate. Once you know that, you'll have an idea of whether all the upheaval of moving is worth it for your dad. Don't be afraid to ask these questions - doctors are used to them. Write down all of your questions and take your list along when you arrange to speak to his consultant. This way you are less likely to forget anything important.

Please keep in touch and let us know how you get on and remember, that we are always here for you.

Kind regards,

Jolamine xx

I have been back today where I have managed to have a conversation with the doctor with my dads consent we now know what it happening unfortunately his cancer is not treatable we asked the question how long will he have left and they estimate 3-5 months I'm absolutely heart broken

Hi Kerry,

I am so sorry to hear this and understand how upsetting this news is.

I am glad to hear that your dad has given his consent for you to talk to his doctors. Have you explained his housing situation to the doctor and asked for his advice? S/he should be able to put you in touch with the right people to set things in place.

We are always here for you.

Kind regards,

Jolamine xx

Good morning 

I did mention it yes and was just told it would be part of his care plan and they would help when the time come to discharge I asked if they could get things started so we can get him home where he wants to be which the doctor agreed he's seeing his OT this morning so I'm aiming to get over there to be able to discuss things with her as I'm still not sure how it will all work.

I'm still in shock I thought he could have some sort of hope especially as he responded to Radiotherapy for his spine but it's too late he's got it on his lungs and now testing his bowls as he's leaking blood

Hi Kerry,

I know just how devastating this sort of news is. I lost both my mother and my father-in-law to cancer and I have had 2 bouts myself. With my father-in-law. We had him at his GP  on 5 separate occasions complaining about a very sore back. At 97, his GPs kept telling him that it was just Arthritis. At his last visit to the surgery, his GP advised him that he was sending him to the day hospital for an assessment the following day, He was admitted by 11am, had scans and the doctor asked to speak to us at 2.00pm. He informed us that he had cancer and that it was so advanced, that his life expectancy was only 2-3 weeks. As it turned out he died within 5 days.

How did you get on with his Ot this morning? With other relatives we were assigned a social worker to deal with making arrangements for homecoming. This was all arranged through the hospital and we found her very helpful. She was also able to arrange everything very quickly.

I am thinking of you and your dad. Do you have family or friends to support you through all of this?

Kind regards,

Jolamine xx

Good morning 

yes managed to speak to his OT and thinks started to get sorted we was due to take him home today but instead we are all having to say our goodbye's it's to late now to give him his wishes to be at home I feel we have let him down he wanted to visit his younger children and watch them go to school one last time and now he carnt do that I'm so angry and upset I don't know what to do I can not find the words to explain all this to my siblings there are mixed ages from 16 to 4. 
 

im sorry you have had to go through something similar with ur parents I want to thank you deeply for taking the time to reply to me and help guide me the correct way to get some answers.

Hi Kerry,

I am glad to hear that you managed to speak to his OT today, but so sorry to hear that he is not coming home. It will be very upsetting for him not to see his younger children off to school one last time. It is difficult to explain when some of your siblings are so young. Could you surprise him by bringing the children to see him? It might help them too in the longer term.

Is there any possibility of moving him to a hospice, where he might be more comfortable?

Kind regards,

Jolamine xx

After a long 4 days of dad sleeping constantly he woke up and spoke he had a tiny bit of food and drink and he kept saying he wanted to go home the team in hospital finally listened to him and we have managed to get dad home where he wants to be we have got a good support system in place with the Pallative care team and careers and  the main thing is he's comfortable and at home.

im scared of the not knowing, I've not left his side for 2 weeks I need to go back to work but I'm scared if I go I will loose him I'm just trying to remind myself all time this is dad wish to pass peacefully at home, it's so hard and painful this journey he should not be going through this he's only 56 life just is not fair then the guilt hits for my siblings are not gunna know their daddy like us older ones I feel helpless scared and broken and I don't know what to do