I wonder if you can help me. I’m trying to get some support for my dad. He has terminal rectal cancer and is very weak. He struggles to get about and is frustrated. I’m not convinced he really understands what’s going on and he seems to worry a lot but won’t speak to me or my family about it. He’s always emotional and often in tears. He is on antidepressants but I feel it’s more emotional support he needs. He can’t hear very well over the phone and the gp is always in a rush. Is there any emotional support available anywhere, someone who can visit him just to talk to him about what’s happening. I’m so lost and i know he won’t talk to me about it as he’ll be protecting me but he doesn’t have anyone else to talk to. Any advice lost appreciated. Thanks
Thank you for contacting the Macmillan Online Community. I’m sorry to hear about your Dad’s diagnosis. It’s obvious that you can see he is struggling emotionally and physically - but it must be very difficult when he is not openly discussing this with you or the family.
NSJ does your Dad live alone? Or is he being care for somewhere? You mentioned that he has a terminal diagnosis, is he having any treatment or is he due to receive palliative care? I ask really to establish what additional care or support could be appropriate or available to him just now.
We do offer emotional support through our telephone Support Line, however I appreciate that this is an issue with his hearing. If your Dad could get to - or be taken somewhere, Macmillan also offer face to face support across the country via information and support centres and support groups. I’m not sure where your Dad is located, so you may want to search yourself using our ‘In your area’ database. You can filter the results using the options on the left-hand side.
In terms of visits - If he is perhaps not receiving any ongoing treatment through the hospital, he may benefit from the support of a palliative care nurse. Depending on the provision in the area, these nurses can be from a local hospice, or other charitable organisation, or NHS & Macmillan. Macmillan nurses are only ever appointed to patients on a referral basis and this must be coordinated by either the patients GP or by the healthcare team at the hospital where they are being treated. These nurses can help a person to manage their pain, medication, symptoms and discomfort, but also should be there to provide emotional support to both the patient and their family members.
You mentioned that you Dad is very weak and struggling to get around NSJ. Do you feel he is in need of some practical support? A lot of people struggle with the reduced independence that cancer & side effects can bring. Sometimes adaptations to the home or mobility equipment can relieve this a little. You may have looked in to this already, but he would be entitled to something called a ‘needs assessment’ via his local adult social care team. This also identifies any domestic needs or requirements for carers to visit. You can search for the relevant team contact using your Dad’s postcode here.
I can hear how concerned you are to see your Dad like this, and the whole situation must be taking it’s toll emotionally on you too. Do you have much other support around you? I would really welcome you to contact us yourself if you need to talk things through or if you want to ask any questions on your Dad’s behalf.
You might also want to take a look at our groups; ‘Family and Friends’ and ‘Supporting someone with incurable cancer’ here on the community. Additionally, you can speak to us through email, web-chat or on the Macmillan Support Line detailed below.
Macmillan offer a number of booklets around these issues which you may find helpful to read yourself or pass on to your Dad. I would suggest ‘Cancer and relationships’, ‘Talking with someone who has cancer’ and ‘Talking about cancer’ (for the person diagnosed).
I hope his information helps but please do contact us if you have any further questions.
Thanks for coming back to me and for your kind words. Yes Dad lives alone and has a carer come once a day in the morning. I'm not really sure, the consultant has said there is no further treatment and I have arranged (after months of pain) all the appropriate benefits to be put in place and a care assessment which resulted in 1 x 30min visit per day in the morning. I'm not sure what palliative care means - other than the once a day visit and various appointments for his multiple comorbidities he doesn't have anything else. I have searched in the area however he's really too poorly to be out and about - he's barely mobile at all to be honest.
A macmillan nurse sounds like what is required - I will enquire with the consultant's office to see if I can get hold of someone.
I have had the needs assessment completed although the whole process hasn't filled with me much faith. I am just now filling out a return to work assessment which just seems ridiculous given he can't walk and sleeps most of the day. It just feels like the whole system is uncoordinated and trying to get everything in place is so stressful.
He's really lonely. He is usually in bed/asleep when his carer arrives and often doesn't get up. He isn't showering as I think it is painful and tiring for him to get into the shower with the carer.
I know some stuff won't be covered financially and I'm content to foot the bill. I just want to get him a bit more mobile and happy so that he can enjoy whatever time he has left.
Since the news was broken by the consultant - he's had no-one to talk to about this. Is there a way of getting a regular visit to support his emotional and physical needs. I live and work 3.5 hours away and I don't feel like I'm co-ordinating anything well.
Thanks for your help. I will feel better when I know I've done/am doing everything I can.
Thanks for getting back in touch with us.
Try not to be too hard on yourself, it sounds like you’re doing the best you can in a very difficult situation. It’s not easy to see someone we care about struggle like this and as you say, you’re not just around the corner from where your dad lives.
‘Palliative Care’ is care and support for people with a life-limiting illness NSJ. It’s aim is to help the person have a good quality of life. It can involve managing physical symptoms as well as emotional and psychological support. It doesn’t necessarily mean ‘end of life’ care.
I think you’re doing the right thing in trying to arrange for a Macmillan nurse to see your dad. They do offer emotional support as well as helping with pain and symptom management so this sounds like the right way to go. Perhaps he might find it easier to open up about how he’s feeling to someone outside his immediate family NSJ?
‘Age UK’ have befriending services in some areas of the country. This will often involve a volunteer befriender visiting an older person in their home, perhaps for a cup of tea and a chat. You can have a look here to see if this service is available in your dad’s area.
Do let us know if there’s anything else we can help with NSJ.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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