Hospice care for dad (Page 1 of 2)

Gavin,

I can't be of much help on hospice care as my husband passed away the day we planned to take him home with hospice care.  I am also thinking that it may be handled differently in Scotland than it is here in the states. However, I think you are right that it needs to be discussed and checked into.   Hopefully your Mum will come around and see that these issues need to be addressed.   

I'm hoping some of the others will have some answers and help for you.  Good luck to you as you travel on this journey and try to also take care of yourself.

Darla

Thanks Jan. I know that if need be, then dad will get the use of a hospital bed, we were told that a while ago so I'm assuming that we would also get other stuff that you mention. And there will be nursing help that will stop in when needed also, and I do the cooking and housework just now so I would continue with that.

I'm guessing that where it becomes really difficult is when dad would be bedridden and needs help with that, which obviously mum couldn't manage. And if dad needs oxygen then that would also be delivered to their house when needed.

Thanks Darla. I know that we would have help at home from the Macmillan nurses and also from the Marie Curie nurses. If dad wanted to stay at home then they would stop in when needed and I also think that Marie Curie nurses can come at night and even stay over to let us get some sleep. I know that patients have to be referred to them but I'm assuming that dad would be eligible for that. I'm not sure how it works exactly in the states, but here we do have great care in the community from these excellent organisations if patients need them.

Should he have to go into hospice, then he would go into Roxburgh house which is attatched to the Macmillan day care that he day goes to each week. Also, if he has to get his stomach drained then this is where they will do that procedure and not in the hospital so he would have to go in for at least a few days. I know it is hard for mum to talk about this stuff, but I sort of think that it is better to discuss it when we can rather than wait until we are maybe forced to make a very quick decision which may be even more stressful for them.

Thanks Lainy. We took care of both of my grandads at home at home for as long as we could and I know that it will get tough, especially for mum. I know that mum is not up to caring and a lot of it will be down to me. I am ready for that and will do whatever I can, but you are also right in that it will be hard for mum as she cant really do a lot.

Making a list of the pros and cons sounds like a good idea and I'm hoping that when we see the Macmillan nurse on Thursday then she will have some input here to which mum and dad will listen to. I know that dad will listen to what I have to say and if I feel that hospice is the best option then he will go with that, but I also know that he wants to stay at home for as long as possible. I guess there is no right or wrong answer here.

Thanks everyone for your thoughts and kind words.

Gavin

I think what happens is you do the home thing with the option to go into the Roxburgh House kept up your sleeve because it all depends on how things go and what symptoms manifest.The only thing for sure is that your dad doesnt wind up in an acute hospital bed,that is always to be avoided.But home with support and a good palliative care hospital are both good options       Janet

Gavin,

My heart goes out to you.  I was the one to set up all of the Hospice stuff and I can't say enough about them.  My dad only had to make a phone call to get questions answered or when problems arose, a nurse came to the house twice in the middle of the night.  We were assigned a nurse, a social worker, an aid (who helped with bathing and shampooing hair), a doctor, numerous volunteers that would come and visit with Mom while Dad went to the grocery store or just got out by himself for a couple of hours.  All of the equipment was delivered after a simple phone call.  Whether it was a shower chair ( a very big help) or finally a hospital bed, the service was prompt and sooooo compassionate.

Here is the link for the Hospice we used.  I know it won't help you but it does have some wonderful links about how to start the conversation and when is the time right.  Just follow them and that will give you some ideas of questions and ways to approach the conversation with your parents.

I've been there and I think the saddest times are when we as children have to "parent" our loving parents.  I'm writing this with tears because I know how truly hard this is.  You are an amazing son and a true lasting legacy of the wonderful parents you've been blessed to have. 

I lost my Mom on April 3, 2009 and sometimes it seems as if it just happened.

Here's the link:  http://hospicegso.org/index.php?option= … ;Itemid=58

You are in my thoughts and prayers as we enter this Thanksgiving season.

Many hugs and much, much love.  You will make the right decision.

Love,
pam

Dear Gavin

Gavin,

I am sorry I missed this post last week. The last 10 days have been very busy with my mom getting her stent replaced so I haven't been on the board.

I am inspired by your courage and your love for your parents. I am not looking forward to making the transition you now face but I know it's coming soon enough.

I am glad that your dad is able to talk to you about making this decision and that he is able to look to you for guidance and to lean on you when he needs support.

My heart goes out to you. And to both your mom and dad.

Hi everyone,

Was up at the hospice this afternoon and again in the evening to see dad. I sat down with the doctor on my own as mum didnt really want to talk with her and would rather sit with dad. Mum would rather that I speak with her from now on and the doctor is okay with that if that is what mum wants.A bit of good news, the kidney problems are not being caused by the tumour spreading into it or pressing into it, which she said was a good thing. However she said that dads kidneys are dry and are struggling right now, and although she said that dad seemed a bit better this morning, she described dads condition right now as precarious and she is monitoring him very closely indeed.

He also has a urinary infection and is still on the sodium drip and still has the temperature and is still vomiting, even though he has the syringe driver in and is not taking his meds via tablets. The doctor said that his body is under a lot of stress with having to deal with all of this, the CC and the jaundice combined. Now he is bringing up blackish bile instead of what he was bringing up before and this only started today. His cough has also deteriorated quite a lot since yesterday and he wants to drink a lot of water.

Dad didnt sleep at all last night and he really is badly irritable. He didn't really want to talk at all to us in the afternoon and wanted to be left on his own after about an hour. So I went back up in the evening on my own and he still didn't talk much and again just wanted to be left on his own. I think he knows himself that he is going downhill pretty fast and this is his way of handling it. When he was speaking, sometimes he was talking reasonably clearly and making sense, then a minute or so later he was badly confused and we could barely hear him. Before I left this evening, he told me to take care of mum, which I promised him that I would.

I told the doctor that we will be back up tomorrow and she wants to see me when we get there, so will see what tomorrow brings. On a slightly better note, he managed to eat something for breakfast, dinner and at tea time, but it's not staying down, but at least he wanted to eat something.

Thanks everyone

Gavin

Dear Gavin.....From what I have experienced personally and from what I have learned over the years the bile you are describing is an indication that your Dad is nearing the end of his life.  I really am struggling with telling you this and I so much hoping not to be out of line.  However, the compelling reason for sharing this far outweights the risk of offending you.  This is a precious time for all.
All my love,
Marion

I'm so sorry, Gavin.  You seem to have shared all the ups & downs with your mum & dad in this.  You are clearly making all you can of all the precious moments.  My thoughts are with you all.

Jxx

Dear Gavin, as much as this news saddens us, I have felt dad had reached this point. You have already been one of the best son's in the world and I am proud to call you a friend. Now you have to be one of the strongest as your mum will be more in need of you. Your parents did not beget a son, they have an angel. Maybe I should not call a grown man an angel but there it is! We are sending prayers and thoughts to you and to dad that he has a more peaceful journey now than he has these last few months.

Hi everyone,

Many many thanks for all your kind words and support. As always, it means so much to me and even more so right now. I have no idea where I would be right now if it wasn't for all of you.

Dad is getting worse with each day. I spoke with the charge nurse today and she said he has gotten a lot worse overnight, which is strange as he looks and seems to be better than yesterday. They have stopped the fluid drain as it is causing problems now with his lungs and kidneys. They have also stopped all his meds apart from the Haloperidol which he is getting through the syringe driver. He is in no pain really so they have stopped the pain tablets, he can't keep any tablets down so they have pain killing injections for him if need be. He had an injection this evening which helped with his vomiting and he has had quite a lot of sleep today but nothing to eat at all. He is bringing up more black bile now, but is less confused now so we can talk more than yesterday which is good.

He has been moved to a private room which is much more spacious and comfortable for us all. Now they are just going to treat any of the symptoms that arise that they can and the aim is to keep dad as comfortable as possible. I was told that he only has days left now. We are thankful that he is not in any great pain and is as comfortable is possible.

Julia, thank you. Yes we will share these precious moments with dad and make the most of the time we have left.

Janet, thank you. Yes dad has had a decent innings but has gone down fast since he last went out for a paper. I am thankful that I will be able to be beside him through it all.

Lainy, thank you. And I am proud to be your friend also, as I am to you all. I know that I have to be strong for mum and dad right now, and it is not easy but I will be there for them both no matter what. I know that mum will need me more in the weeks and months to come, and I will be there for her for whatever she needs. I made a promise to dad to take care of her and I will do so, no matter what lies ahead. The journey for dad has indeed been tough, and like you, I hope that this part will be more peaceful for him.

Darla, thank you. I am very glad for the time I had with dad and also for what time we have now. Seeing how happy being able to go horse riding for the first time in his life made dad feel was a joy to see. And each of these 12 sessions was a moment to be treasured and will always be remembered. Yes his comfort right now is the most important thing, and I will do everything I can to make him as comfortable as possible.

Once again, thank you all so much for your support, kind words and for keeping us in your thoughts and prayers.

Gavin