My wee dad
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Aw, Carol, it is hard enough to fight this monster CC let alone trying to fight for someone’s comfort and wishes. If the discomfort is kept under control I have a feeling once Dad gets home he will actually become more secure and comfortable. It could be the move back home that has him upset. Just a suggestion but you might want to set up a bed in the living room so he does not feel so isolated in the bedroom as this could be a long time to spend in one smaller room. I had set Teddy up in the living room where it was airier and brighter and good for visitors and he could watch the larger TV to his hears content! Best of luck and let us know how it goes. Be strong!
Hi guys …. Thanks so much for your support as usual….The consultant I’d made appt with didn’t turn up and I spoke to a ward dr instead. I’ve since called and spoke to the ward manager and our local district nurse and asked them to talk to each other with regards to the amount of support we may get if dad sent home. I’m under the impression it will be much the same as we had before with carers in 4 times during the day. Dad is now bed bound so they think it will be easier for mum. They’re going to arrange a family meeting with my dad mum myself, the consultant, district nurse, or rhapsodic therapist etc to make sure everyone is in agreement dad’s well enough to actually come home !!! Feel sorry for dad as he’s quite comfortable where he is and feels safe and secure there. Thanks again xxxxx
I forgot to ask as well Carol, does your dad have a Mac nurse as they should be able to help out with nursing tasks if the Marie Curie nurses can not. How did your meeting with the consultant go?
Hugs,
Gavin
Hi Marion,
How it works here in Scotland and i assume the rest of the UK as well, the carers that I am talking about are carers that will help with personal care, washing, cooking etc and they are not allowed to administer medicines either. At least the ones that come to my mums are not. They will be able to get medicines ready for the patient to take, put them out etc but the patient has to take them themselves.
Macmillan nurses or Marie Curie nurses will be allowed to administer these drugs and would also be able to prescribe stuff as they are nurses and not carers. They can also evaluate patients, make decisions advise the GP etc but again, carers would not be able to do that..
Hope that makes sense. Also, the district nurse would probably come in to see someone a lot more if they were being cared for at home so that is something that should be kept in mind as well. As you know, my mum gets the services of the local COPD nurse and she is coming in once a week. But for someone who has cancer then that role would most probably be taken up by a specialist nurse who would be a Mac nurse.
Hugs,
Gavin
Gavin….how does this work in the UK? You mentioned carers visiting three times per day. Do they administer drugs, evaluate the patients and/or what else is included in these visits?
Hugs
MarionHi Carol,
Thanks for letting us know how things are with your dad right now and sorry to hear what Marie Curie have said about everything. I would ask the consultant about any other hospice facilities that may be available that are not related to Marie Curie, that may be worth doing. I would certainly mention to the consultant that your mum can not cope with the caring duties and see if they will get involved with his hospice planning. Perhaps the cons can talk with Mare Curie on your behalf, stress what is happening not only to your dad but your mum as well.
I know that your dad would be eligible for carers coming to the house for 3 time a day or so each day but that would be for general personal care and not medical care and that would be funded by the local council. I know this as my mum gets that as well each day once a day.
Will have a think about this and get back to you with some more thoughts if I can come up with anything. And please let us know how everything goes.
Hugs,
Gavin
Dear Carol,
I think hospice and home health care work differently in the US, so I hope some of our overseas members can chime in. However, I wanted to let you know that I wish your Dad and your whole family as much comfort as possible during this time. I hope it goes well with the consultant- let us know how you make out.
Best wishes,
CatherineDad’s been stable last few weeks … Been bed bound for 5 weeks now and appetite still poor. However since dad stable Marie curie hospice saying they’re not a long term care facility so our options are now home or care home although they are still saying prognosis could be a couple of weeks to a couple of months at most. Mum isn’t fit enough to care for dad at home as has had a couple of mini strokes but won’t think of putting dad in a care home as he needs palliative care !!! I’ve another meeting with consultant tomorrow any ideas if questions to ask? Dad wants to stay in hospice as he feels safe and secure and I think if they try and move him anywhere it will be too much for his wee body!!! Thanks xxxx
Dear Carol,
So sorry to hear this most recent update about your dad and I so know what you are going through right now. I do think that now you have made the right choice about your holiday and I know that even if you were to go then you would not enjoy it at all for obvious reasons.
I so know that you do and will have the strength that is needed for you to get through this and at the same time be there for your parents. It s hard but I know how strong you are. We are here for you always. Thinking of you and your dad right now.
Hugs,
Gavin
SENSITIVE
Dear Carol, I am so very sorry to read this but know that somehow you will find the strength. It sounds like your Dad is ready to have some peace and comfort and I know that a lot of us who have been in your situation have found the strength by giving their loved one permission to leave. I kept telling Teddy that it was OK to go, that I would be OK and that I loved him. Sometimes the patient wants this permission and it seems to give a mental calm to the person who says it. I said it at least 6 times that final day and each time got easier as I really accepted what I was saying. No matter how much we love someone, there is a time when enough is enough. My prayers and thoughts are with you and your family.
P.S. Looks like Dad in his infinite wisdom helped you make your decision.Carol,
I know how hard this is for all of you. You will have the strength to get through this and know that you have all of us to help and support you, too. You are doing all you can do right now by just being there for them. I agree that keeping your dad as pain free as possible is most important right now. And yes, try to take care of yourself, too.
Thinking of you.
Hugs,
DarlaCarol,
My thought and prayers are with your family. I’m sure they appreciate your love and support. I hope they are able to keep your Dad pain free, and remember to try and take care of yourself as well.
Catherine
Hi guys ….dad’s dr said dad’s liver function not good and he’s now getting a bit muddled due to cancer spreading …. Told it’s a day at a time and I’ve decided I’m def not going on holiday. Consultant thinks I’ve made the right decision. Dad saying he wishes he could get a cocktail of drugs to end this nightmare and suffering. I hope I have enough strength over the next few days/weeks to get through this and to be strong for mum and dad …. Thanks for your continued support xxx
Carol, I know this is a tough situation but I will tell you what I STILL tell my kids who are in their 50’s. When pondering a rough decision make a list of pros and cons and see which out weight the other and go with that. They tell me it always works.
If you go you will worry more and if flying I take it you will be quite far. Perhaps if you were to change location of the trip and be closer to home you might not stress as much? What ever you decide know that it will be the right decision.
And I so agree with the others that there is no need to suffer with pain these days. The DOC needs to order something else even if using a combination. Teddy his last 2 months was on 350 mg of long lasting Morphine every 12 hours with a breakthrough injection every hour of 150 mg. He was quite comfortable and that made all the difference to me. At one point they tried a Fentanyl patch which did nothing for him. But comfort is the magic word!I agree with Marion on this Carol that the pain in your dads stomach needs to be brought under control. Has your dads med team or hospice team said what this can be? Have they offered pain injections as maybe a way of dealing with this?
I thought that may be the case with regards to the holiday that Ian and the kids would not want to go without you. And I think that if you went as planned for a few days with them to get them sorted then I guess they would not want you to go back home? As I said Carol, this is a tough one with no right or wrong answer I would say. What ever you choose though I know it will be the right decision for you and your family.
Hugs,
Gavin
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