I'm obsessed with trying to figure out how long he has and if I can handle it. My Dad is 63 with metastsized esophageal cancer. I basically moved in with him 2 weeks ago because he doesn't want to go in the hospital. The constant moaning is taking its toll on me. I am alone with him 24 hours a day and am starting to have severe panic attacks. When he gets quiet I can't sleep because I'm constantly checking if he's breathing. He is afraid of taking too much medicine and afraid of how out of it he is yet he has a dnr. It has been frustrating. I feel guilty for being frustrated. He speach is getting very slurred now and he's very confused but not 100%. Not to mention I can't be out of work too much longer because I'm broke. Help!
Alone with my dying father and I'm having ... - PSP Association
Alone with my dying father and I'm having panic attacks.
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Shnun
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36 Replies
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Your dad may not want to go to hospital but if you are the only caregiver that will be your best option. You will be able to support him better if he is in hospital and you see him there , than keeping him home in your overwhelmed state. We just moved my mom to hospital and struggled with the guilt of doing it but now I go for a few hours and am able to be loving and supportive. It is better for both of us as the hospital can better care for her needs.
I'm so scared he will hate me. The few times it was mentioned back when he was having conversations, he would say, the just go on home and I'll be fine. But he can't be alone. I have no family to help nor would he let them. He's almost to the point of just being incoherent. Part if me wants to take him then and maybe he won't be able to refuse. And that just makes me feel like a horrible daughter. We haven't always had the best relationship but I feel like this is my responsibility. But my anxiety just doesn't want to let me do it anymore. I'm so torn and exausted. I just wish I had a better idea of how long he has.
Bless you! What an aweful situation to be in on your own!
I think you should do 2 things.
1. Ring your dad's GP and get him to put you in touch with Hospice. She will understand all that is happening and make sure he is comfortable. Don't know where in the world you are, but this should be your right to have this service at your home where your dad is in a known space.
2. Talk to your dad and tell him you understand that he does not have long to live, and that you love him and will miss him but you are letting him go. It seems important to convey this information to our loved one, so that they can relax and not fight to stay alive despite their pain and suffering.
You sound very alone! Is there a relative or friend you can call who will drop everything and come to support you? Ring your work boss and tell him about the situation. If he is a caring boss, s/he should have some empathy and even get others involved. If you are a religious person, ring your church and ask for prayer and practical help, such as a few meals.
I understand your panic! You are afraid to leave him alone and you have to eat and drink too. Take some deep breaths! You are needed there, and it will not be for very long.
Write down what you need to do so that you can read it to those you talk to on the phone. This is what i do when my brain refuses to think clearly in a crisis!
You talk about being afraid of him not breathing when he goes quiet. This is what will eventually happen! You need to have that talk to yourself to - that you let him go, because he will be free of pain and suffering then.
If this should happen when you are alone in the house, then ring his GP and tell him to come. He should know what to do in such a situation.
It has all hit you at once! You dont sound very old. When my mum died, she was 63 and i was not there. I was in my mid-twenties, and although a young mother, was not prepared - just like you!
You are not alone here. I understand and there will be others who will help too. If you let us know where you are, there may be someone near you who can send you a private message and get in closer touch.
I hope i have been of some help. Take courage and make things happen. Get Hospice beside you and then hold your dad's hand and tell him you love him. He sounds a very special person!
My thoughts and prayers are with you both.
Hugs
Jen xxx
This forum is for specific, yes! But all of us are aware of what it is like to lose a loved one like you. I think you need help, so i replied. That is what we do here! Dont go away if you have found me helpful. You can private message me - but be aware i am likely to be a long way away!
Hugs
Jen xxx
Thank you so much. Sometimes it helps to talk it out. I am 39. I used to be a nurse and although I have experience with death, this is totally different. I mentally know what to expect and what is happening but emotionally I'm struggling. I'm also used to hospice kind of running the show. Unfortunately my Dad goes to the Veterans hospital here in Virginia and they will only send hospice once a week for 30 minutes. My Dad opted out of that because he has an irrational fear of being overdosed. Again, he has a DNR so I don't understand that. I have two teenagers at home with my Husband and am not able to be with them. I am an only child, my mother isn't in the picture and my friends are busy with their own lives. My boss is great. They are giving me the time I need, I just financially can't keep doing this. Every day I think it might be time but he just keeps hanging on. He hasn't eaten food for almost 4 weeks and leading up to that was only a few cans of ensure a day. He is still drinking about 8oz of water a day. He is so afraid to sleep even though that's pretty much all he's doing. I just don't know. I feel myself going a little batty. Just delerious.
Our experience with hospice through the VA was totally different. Have you been in touch yourself with the administrator in charge of your father's case? It's hard for me to understand that there isn't more help for you than that.
Yes. I went to all of his appointments with him. I was here for the meeting with Good Samaritan hospice and for what ever reason that is all they will cover. Anything past that we have to pay for. He doesn't qualify for secondary medicare because he's just shy of 65. He does have the option for full time care in the hospice unit at the VA. I will use that as a last resort if I am unable to continue to care for him or feel he would be better off.
Yes, I see. We had inpatient hospice available at the VA or at home paid by Medicare. I'm sorry you are in such a terrible spot with so little support.
That all sounds very 'normal'. Except for the hospice visits! That sounds ludicrous - what can they do and what help can they give! And death is not that ordered!
Are you in touch with your dad's neighbors? Would they shop for you? Or raid the cupboards and see what you can find! Sounds like your dad has been a bit reclusive! Have your children seen him recently?
It is understandable for him to have been a loner if he has had cancer for a while. Do what you can to make him comfy.
Your husband will understand that you have to be there. When my dad became ill I left my husband to fly and help dad. Told my love I didn't know when I would return but that I would! I was away 3months in all.
When my husband was sick, I had to get him into hospital as I was unable to manage him at home any more. He always hoped to return but I guessed he would not. You do what must be done!
If you feel that your father would be better cared for in hospital then you need to do what is necessary. If you have nursing experience, then you have the knowledge to care for him, one way or another. It is so different tho when it is your own!
Try and make your peace with him. See if you can understand what he feels and what he wants to happen. Hold his hand and get him to rest. You too. Don't be afraid of what might happen! He will be free of pain soon!
Have you spoken to the doctor yet?
Whatever you do, do what you feel is the right thing! We all beat ourselves up afterwards wishing we had/had not done something, but I have found if I did what I thought was best at the time, I have been able to work through the grief of not being able to do what my husband wanted - as it was untenable and he did not see that. And it helps to talk!
Take care.
Hugs
Jen xxx
I feel like I'm doing a pretty good job as far as care. I make sure he's clean and changing positions, no bed sores so far. Giving him his morphine, checking vitals etc. I speak softly and calm and remind him that everything is ok and that I will be ok. I think a lot of his moaning is anxiety because his pain seems pretty under control. He's very child like right now when he does speak. If I feel like I can't do it or I feel he needs to go, I will certainly get him to the hospital. Even if he's not happy about it. I don't feel afraid of when it happens, it's this part right now causing panic attacks for some reason. When I said I check when he gets quiet to see if he's breathing, it's not out of fear but more wanting to be there or at least know the general time it happens. Thank you so much. Talking this out has actually calmed me down quite a bit. I know it will be okay, my brain is just trying to mess with me. Thanks again. I'll update again one day!
I wanted to add, I did bring the kids a few weeks ago when he was able to sit up and talk still. They visited, gave hugs and took pictures. They said goodbye. He doesn't want them to see him again and that is fine with me. I would rather their last memory be of that day.
Pleased your kids saw him at a good time. My grandkids were afraid to see my husband as they had seen their other grandma in a state they should never have been allowed to see! Granddad hugged them and one complained he tickled her - which was his normal way with her!
Yes i did feel you are more calm. I am pleased i was able to help. I had several weeks to go through what you are experiencing, and i had no more than Google knowledge and a lot of questions. When my dad died i was calm as he was in hospital and i could not fault their care!! I left him in their hands, having spent an extra hour or so with him that i did not expect, and watched them hook up the pump, then said my goodbyes and saw him drift off. He was gone by morning.
You maybe know too that our loved ones sometimes leave when we are not there with them. Several others here have had that experience. It happened to me too.
You will get through this. Am pleased that you are more calm.
Am out for the day tomorrow, but will check in sgain when i return.
Take care. You are doing a great job! It must be particularly hard for you as his daughter.
Hugs
Jen xxx
Hi Shnun
I'm sorry you are having such a tough time.
I'm with the others on this.
We have limits as to what we can do. Most of us tend to hang on beliving we are doing the right thing. Often we are running ourselves into the ground and that's no good to your Dad either.
Please look after yourself too.
Wishing you the best.
Kevin
Well things took a pretty emotional turn last night. I tried to tell him that this was too overwelming for me and that I felt it was time for him to go in the hospital. He basically said no and that I could just leave. I broke down crying. I tried to explain that I'm not able to keep up with the kids appointments and my job, etc. and that he can't be on his own. He has been very confused about the days and things going on but during this conversation he was completely lucid. I'm still here. I can't bring myself to leave. He can't even get out of the bed. So I don't know what to do now. I'm just sitting here. I haven't eaten in two days because I'm just so sick over this.
Hope things have improved in the last few hours. Am sorry to hear of your difficulties.
Remember you cannot look after anyone well if you dont feed yourself! If you can sit and do that, you may well feel differently about circumstances - or at least be more able to deal with them. You will feel less stressed too.
Hope you have been able to have a talk with your dad. Could be he is thinking more clearly and feels embarrassed that you are caring for him. It is not an ideal situation and probably gets in the way of your relationship at a time when you need to relate to each other as father and daughter, not patient and nurse.
Dont think you have said how far away your family is from you. Perhaps you need to ask your husband to help you by grtting him to manage the children's appointments. Aam sure my husband had no,idea how much i did with the children during the day, and running around sports fixtures at weekends - until he had a spell doing it on his own!
Surely your husband would do this for you if he understood how stressed you are and how important you feel it is for you to be with dad at this time!
Above all, look after yourself properly! Make yourself eat, even if only light meals. This will still
help hold you together! Csn rrmember feeling the same way.
Talk to the hospice nurse next time she visits and see if she has any answers.
I hope things improve.
Hugs
Jen xxx
My heart breaks for you during this overwhelming time! I am so new to this situation myself that I have no sound advise for you! My immediate thought while reading your post was Hospice!! I do know firsthand the toll it takes on a person being the sole caregiver. Please do something to take care of yourself! First and Foremost EAT! All I can really offer you at this point is Prayer, I will most certainly be doing that!!! My hope is that your Father passes peacefully, I hate to make that sound hopeless
The situation I'm in with my Brother is hopeless. He is not yet in the very latest stage of his condition, but I am well aware that it is only going to get worse. My concern with him is mostly just to keep him comfortable! I benefit greatly from this forum so I'm Grateful that you reached out! I truly hope things get better for you real soon!
Are you his DPA and/or have access to his money? It might be worth it (even if you have to pay) to get someone in for a few hours so you can get away most (if not all!) days for a while. If he’s not eating, then I can’t imagine it will be too long before he passes. Is your husband able to help out for short periods? There must be volunteer organizations that will send someone to sit with him for an hour or two. And the moaning isn’t necessarily pain or anxiety - it could just be reflexes or attempts to talk. Many people have “guttural” sounds when nearing the end. Don’t assume the worst (that it’s an intentional response and he’s tormented!) as there’s no way to know for sure. And, as I’ve said (I’ve seen many, many cancer deaths), metastatises can interfere with the brain. I don’t blame him for fearing a morphine death - here is America too many people get that and are out of it in their final days. Maybe an area agency on aging could help? Or see if there are palliative care resources online? Hang in there! This too shall pass. But you must take care of yourself as best you can.
When my Dad was healthy, unfortunately he was a pretty mean person. We always had a relationship but it was hindered by that. Because he is still having periods of complete awareness, I know that If I called someone to get help he would not only make them leave but probably me as well. I just know that. We don't have a lot of money. So me being out of work is really becoming a problem. My husband can't help because he is working all the time trying to make up for it and when he's not he's taking care of the kids. One minute I think my Dad is finally reaching the end, he's completely out of it, not taking in fluids nothing. Then all of a sudden he'll perk up and sit up in the bed and start asking for stuff to drink. It's just back and forth. I broke down and asked a family member to please sit with him so I could go home for a little bit bit she backed out at the last minute. That's when I kind of broke down. I'm in a constant state of shaking and nausea. This is probably the last week I'll be able to do this. He will have to go to the hospice unit at the VA or I guess be alone here. My head is spinning. I'm thankful to have found this outlet and such supportive people that have reached out on here. I pray for each of you in your own journey or one that you have already been through. Will post again soon if something changes. Today's goal: eat and pray
Oh, one more quick question, does or did anyone have experience with chronic hiccups? He has had them for 3 days now and they are becoming quite the problem. He's beyond frustrated, they are taking a lot out of him. Seems random but I thought I would ask..
The hospice unit at our VA hospital here in Maine might be an exception, but it was lovely, well staffed, comfortable and reliable. Of course no one wants to go, but after the first week, neither of us worried about it. If you are as close to collapse as you seem, you have to do something before the situation becomes an out of control emergency. That would save your having to defend the hard choice, but it can't be the better way. Save yourself. Peace, ec
Well things have taken an unfortunate turn. After much discussion, begging and pleading he still refuses hospice or hospital. He can no longer stand or hardly speak. I called the non emergency rescue unit as well as adult protective services. Both told me that as long as he can verbally refuse, they can not force him to do anything. I had to make the difficult decision of giving my Dad an ultimatum. I agonized over this. He decided I should just leave. Even though I'm still not sure he understood completely what that meant. His brother who is in bad healtg is staying with him tonight and I came home. I told my Dad that when he decided to seek medical assistance, I would come back. Again, I don't know if he'll remember that. This has been the hardest thing I've had to do but it's all to try to give him no options but medical care. He vomited all day and continued with the hiccups and labored breathing. I would not be surprised if I get a phone call in the middle of the night. And I will be devastated that I was not there.
Sounds like you have done all that is humanly possible to help your dad. Now he has refused your care and sent you home, he has his brother there.
That is good! Maybe between them they will find a solution satisfactory to both. Maybe he will still end in hospital if his brother gets worried.
Whatever happens, it is out of your hands. I know you will worry about your dad, normal, whether they are good or bad. Your dad has made his decision and it does sound like he may not last too long.
Try and relax (yes, i know that will be hard!), stay home, eat, sleep if you can, and hug your family. Try and explain things to your husband. Go back to your dad if you want to, but be prepared to be rebuffed again.
Also maybe, be prepared to call in help, police, or ambulance if you find he, or his brother, are unresponsive. As a nurse, you will probably be aware of protocols in regard to such situations.
Know you will still feel responsible, but try to be calm and think clearly. It is not your fault that he refused your help. You have been trying your best! Guess dad has been too ill or too stubborn to accept your help which was given with professional care. It cannot be easy to care for a parent like you have.
Thinking of you. Keep in touch. Am praying for you both.
Hugs
Jen xxx
I wanted to update you guys and thank you again for your support. It's been a busy few days. I went back to my Dads the next day to find my uncle asleep and my Dad on the edge of the bed scared to death. I don't think he even knew I left. As soon as he saw me he said please help me get to the bathroom. I got him in there and he called out for his mom. Like a child would. I can hardly breathe while I type this. Anyway, I called an ambulance. He was not able to object anymore. They came and we got him checked into the VA hospital. He is gone now. He doesn't speak anymore. The death rattle is there and he's basically just a body waiting to shut off. I've been with him everyday. Tomorrow morning they will move him from his room to the hospice floor. Doctors say he won't make it to the weekend. I'm doing my best to get a little sleep and a little food so that I can prepare for the next phase. I have to handle all of his things, apartment, bills, arrangements etc. I'm sick all day and night. That's about all I can say right now because I'm shaking as usual. I'm so sad. Scared. All of the emotions a person can feel at once. Bye for now.
What a burden to cope with.
You have done well. Keep it up. Stay calm and focus on your dad.
Thinking of you, love from Jean xx
Am relieved you put your anger and fear to one side and went back! He will be well looked after and you will be able to visit him as a daughter if you wish. Be at peace with yourself now that has happened. Yes, there will be lots to do to take care of his effects, but time will slow and others will make the pace.
Take the time to mull over what happened between you and realise what you did was all rightand that the outcome of your dad not being on his own, being properly cared for, was what you were trying to achieve. Your dad made that difficult just being himself - and very sick!
Keep us posted. We are all thinking of you and praying for a peaceful passing for your dad.
Hugs
Jen xxx
My Dad passed away at 7:55 last night. Peaceful and holding my hand. I have no more words right now.
Oh Shnun, I am so sorry. But yet I am pleased he is now at peace and that his passing was peaceful and holding your hand. He was not alone, nor in pain. You made that happen and intervened despite what happened.
I hope it helps how you feel now - that you cared for him and made the right decisions on his behalf.
I hope the preparations for burial and tidying up his affairs go smoothly.
Don't forget to allow yourself time to grieve. Even tho you may not have been close in the past, you forged a new bond at the end.
I am pleased we were able to help you through this tough time.
Big hug
Jen xxx
He is in a better place now, sending my love at this sad time and be proud that you did your dad proud.
Love Kate xxx
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