Topic: Hospice care for dad

Hi all,

I think it is getting to the point where hospice care of some sort may be required for my dad and we are going to have to discuss the options for future care soon. I know my dad would much rather stay at home and has said previously that that is what he wants. And I want him to do whatever he feels is best for him. But today on the way home from the docs, he asked me what I thought he should do and he is looking to me for advice and guidance on this.

My mums health is not good and dad is worried about care at home and how this will affect my mum. I can't be there with them 24 hours a day, they just don't have the space but I only live about 5 minutes from then in the car so can be there pretty quickly if need be. What I said to dad is that maybe he should think more about himself right now and not worry so much about us, but I totally understand his thinking here. The 3 of us haven't really talked about this yet, mum doesn't want to have that discussion properly but it needs to be discussed soon. I tried to bring up the subject today and told her what dad said today, but she refused to discuss it.

I know that dad is going to further look to me for help with this issue, so I'm thinking that he should stay at home for as long as is possible and then if need be enter the hospice when ever that may be. Anyone have any thoughts or advice on this?

Many thanks

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for dad

We went through this also. Ultimately, my dad stayed at home with the help of Hospice. We also hired in home certified nursing assistants to help with eating, bathing, toileting. They will also do light housekeeping and cooking. The cost on this was about $15- $20 per hour US and depending on whether it was nights, weekends, holidays. I suggest going through an agency. It may cost more, but at least if you have a no-show, the agency will get you someone else. You can negotiate the rates as your parents need more help. They will discount for 24/7 care.

Hospice furnished all the equipment needs (hospital bed, portable potty, bed pan, urinal, oxygen tanks--any and everything).

As your father loses mobility, it becomes increasingly more difficult. My dad was pretty mobile until the last week or two so thankfully, it wasn't  a long time, but it was the most difficult when he was transitioning to bedridden.

Good luck! I can't say enough nice things about Hospice and the quality of their service. Please feel free to ask questions if you like. I am sort of in a hurry at the moment, but will be happy to answer anything.

Jan

Re: Hospice care for dad

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care for dad

Dear Gavin, we are so very sorry to hear your dad has reached this point. Unfortunately it sounds like you are the decision maker. Honestly, I don't think at this point I could handle Teddy at home and don't think your mum is up to it either. I think, if you could see her taking care of dad, then ok, if not then it could be way too much for her to take any part in it.  By the same token I would not opt to stay home as well if it was me. I just would not put that on someone else. But that is me. I will tell you like I tell my kids...make a list of pros and cons and you will get help your decision. I do know that you are the most wonderful son in the world!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice care for dad

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for dad

You're in my thoughts, Gavin.  This is such a tough decision & I agree with the others - particularly on the pros & cons issue.  I know you'll come to the right decision, because your heart is so clearly in the right place.

Jxx

"Time may be a great healer, but it's a lousy beautician."

Re: Hospice care for dad

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

Re: Hospice care for dad

Dear Gavin,

You are definately on the right track and seem to already have gotten a lot of good information.  The things you posted about the system there may also be of help to others in similar situations. 

You are a wonderful, caring & supportive son.  I agree that it is better to discuss the options and make decisions now while you have the luxury of thinking about and discussing options.  In our case things went so swiftly we didn't have a chance to think or talk about much of anything and yes, it was very stressful and you feel so helpless and out of control.   I know that you will be able to make the right decisions and the important thing is to consider what your Dad wants and is in his best interests.  Take care Gavin.

Love & hugs to all of you.
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care for dad

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

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Hospice care for dad

Gavin, you are so up on everything and I think you are fully prepared for what ever you now must face. We are all here for you with of course advise, to listen and just to show you we all care. I have a feeling that on this site you now have tons of Grandmothers, mothers, sisters etc. for we have all adopted you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice care for dad

Dear Gavin

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice care for dad

Hi everyone,

Thank you all so very much for your very kind words, support, advice and for sharing your experiences. It really does mean a lot to me, especially just now.

Thanks Julia. This is a tough decision but we will get there and do what ever is best for dad right now and in the future.

Thank you Janet. I know that dad won't go back into hospital now for anything. We were told that any procedures or monitoring will now be done at Roxburgh House. I do personally think it will be best for dad if he stays at home as long as possible and if the symptoms require it, then he will be admitted to the hospice.

Thank you Darla. Yes I have got a lot of good information from everyone for which I am most grateful as always. I will keep everyone updated as to what happens. I did try to talk to mum today about this and we did talk a bit, but the 3 of us need to discuss it together. I also talked a bit with dad on his own today, he asked my what I thought and I told him that if he wants to then he should stay at home as long as he wants to. But the 3 of us still need to talk together.

Pam. Thank you for sharing that, that must have been very tough to write and I appreciate it very much. I think that we will get all the help you mention in your post, but we will probably find out more on Thursday as to dads options and help available when we meet with dads Macmillan nurse. Thank you very much for the link, I will have a read of that. I hope that we do make the right decsions.

Thank you Lainy. I hope that I am ready for whatever lies ahead. But no matter what, I will do the very best that I can for dad and mum. And yes, having the support of you all means so much to me, as does having a load of new grans, mums and sisters! Thank you all.

Thank you Marion. Mum is quite fragile just now and I know this will be very tough on her. I know that pretty much all dads care will come down to me with a lot of help from professionals and I will do my best. We will get a lot of help at home, but I guess we have to prepare for the worst and hope for the best. I will post more information as to the exact help we can expect when I find out more.

As to the draining procedure. Yes dads GP knows about this, it was he that brought up the possibility of that. Dad will be getting an ultrasound soon but we dont know exactly when, hopefully it will be soon and it will be done at the day care centre.I will keep you updated about this as we find out more information. I said it was the draining of his stomach, but perhaps he meant the abdomen and I am getting a bit mixed up. His anti sickness meds have been upped now to 4 a day with 2 buccastem each day if need be. He was sick today at day care and has also been sick again tonight.

Thank you all so very much.

My very best wishes to you all.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for dad

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.

Re: Hospice care for dad

Hi Sharon,

Many thanks for your kind words and support, and no apologies are ever needed from you!

You also have a lot to deal with right now with taking care of your mum and you are doing a great job. I know it's not easy, but you will be there with her throughout it all with your love and support. Everyone is telling me to take some time for myself and to take care of myself, and they are of course right in that. So I hope you will also try and take some time for yourself.

You and your mum are in my thoughts and my best wishes to you both.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for 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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

16 (edited by Katieloumatt Fri, 04 Dec 2009 15:24:37)

Re: Hospice care for dad

Gavin,

Sending you positive thoughts and prayers as you and your Mum take this journey alongside your Dad.

Hope he has a better night and that you and your Mum both manage to get some sleep, I know how hard it is when things are so tough....

Hugs, Katie

17 (edited by marions Fri, 11 Dec 2009 02:43:05)

Re: Hospice care for dad

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice care for dad

Katie. Thank you for your positive thoughts and prayers. I did manage to get some sleep, some of it quite broken but I am grateful that I did get some.

Marion. Thank you as always. I had suspected this, as I had read about the black bile previously before here. And also please know that you could never offened me or step out of line as you say. I appreciate everything you and everyone else can tell me and I prefer to know everything, even things that are tough to hear. Maybe that is just my way, and I realise that it is not like that for everyone, but it is the way I like things. So no, you did not offend me and could never do so. And yes you are right in that this is a precious time for us all.

My thanks as always to you all.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for dad

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

"Time may be a great healer, but it's a lousy beautician."

Re: Hospice care for dad

You have arrived at this point with your dad.Isnt it amazing that he was going out for the paper only just the other day.He has had a good innings Gavin,and you have been a good,supportive son.                      love from  Janet

Re: Hospice care for dad

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice care for dad

Dear Gavin,

I too am sorry it has come to this point, but you have been strong and supportive and done your best all along the way.  Be glad for the time you had and for the time you are now given.  Make the most of the time you have left with your Dad.  His comfort and knowing his loved ones are with him are so important to all of you right now.  You are a wonderful son.  My thoughts are with you and your family.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice care for dad

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hospice care for dad

Ah Gavin, I'm so sorry your dad seems to have got to this point so quickly after still doing his regular paper walk - it seems only a few days ago.

This is where the hospices are just great, keeping patients & family comfortable & doing everything they can to ease you through this difficult time.

thinking of you,  hugs, Val x

Re: Hospice care for dad

Hi Gavin,

I am glad for the small blessings for your dad - a better sleep, less confusion, more time to talk and a private room. Thinking of you and sending you strength and courage from across the Atlantic.

Sharon