I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: LaniB12 on October 19, 2007, 06:01:01 AM
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Okay here we go, I'll see if this turns into a vent or a rant. At the moment I'm hoping for vent.
The update on my father in law is he has returned to the nursing home after a three week stay in the hospital where in his one remaining leg was amputated (twice, they decided they needed to redo the op as infection had set in). So he is now blind, a double amputee and on dialysis. He also has bedsores the sizes of a plate on his back and rump as the hospital didn't have the right type of mattress and it looks as though his prostrate is failing as he becomes incontinent at night in his sleep.
The doctors said he contracted a "golden staph" infection at the hospital (which I have to research) and he ended up on life support unbeknowst to us. He is now very unhappy at my husband for not telling the hospital that his father didn't want to be on life support. Unfortunately the nurses told him his father was under "assisted breathing" and he didn't realise it was life support until the doctors called him in for a meeting at the hospital and announced they were taking his father off life support the next day. It's another example of if my father in law would let me help him I could make his wishes known and follow up things and make them easier as my husband doesn't like talking to doctors. I don't want to sound harsh or anything but it's just because he is not my parent I am less emotionally involved and can make things easier on my husband and his sister by asking questions that they don't think about because they are in an emotionally trying time.
My father in law was taken to the hospital again a few days after his return to the home (we got a 3am phonecall from the nursing home to say they'd just sent him in an ambulance) as he is now refusing to eat. The hospital managed to get him to eat something and sent him back.
He has now informed staff and his doctor at the home that he doesn't want to go back to the hospital but just be made comfortable if anything happens again. His doctor told my husband that his father is "a very sick boy" so this is now seeming very ominous. I think he may be giving up and I'm worried that he may be refusing to eat to let himself die and I don't want him to go in such a horrible way.
I suppose my questions at the moment are is this the end? Is he likely to pull through? If he does make it this time does he have much longer to live? Is there anything we can do to make things better for him now he's lost both legs and is even less mobile?
If he does pass on I'd like to make it as easy for him as possible. I just wish we had some money and could give him a better life at the moment, even just get him a private room at the nursing home. If he can survive another year we can possibly look at paying the difference between his current room and a private room. However this will mean we won't be able to buy our own home for awhile but he is family.
My sister in law has already informed us that as she still doesn't work (although her husband has a six figure salary) she will not pay back her father and has even said that once he is dead her debt dies with him and she won't pay any share in costs for his funeral. My mother in law isn't able to help as she's already borrowed $11k on credit cards and given the majority of that to my sister in law. I've been trying to put some money aside as we do not want to have to raid our daughter's trust fund to pay for a proper funeral but we will have to if needed.
With all that happens in his family it amazes me what a wonderful guy my hubby is (my mum and dad adore him). I know that his family has always treated him like a second class citizen, everything his sister wanted she got. His mum even borrowed off him his trust fund when he was 18 and never paid it back, his father never treated him well and idolised his sister but he still looks after his dad when his sister will not. He's never told me any of this, it's all things that his sister or mother have told me. It is very strange in a way to hear his mother raise these things and then say what a wonderful mum she is. She honestly cannot see anything wrong in living off her son and fully expected when we married that we would live in one tiny bedroom with a baby so we could support her so she could send half her salary to her daughter :banghead;
It's how the trouble began and why my mother in law and sister in law don't like me and why my father in law doesn't like me or my child. My sister in law rang me up when I was two weeks away from delivery of my baby and abused me for us planning on getting a place by ourselves and giving my mother in law three months notice. Her words were (without the expletives) were along the lines of "Now mum can't send me money and she can't buy stuff for my kids and it will ruin their Xmas". We'd actually given her about 10 months as we knew we'd need more room once bub was born. She then rang her father and complained that we were kicking her mum out of her home. I thought we'd been fair as my mother in law does have a well paying job and if she stopped sending her daughter money she'd have enough for a place of her own.
Hmmm, I think I'm getting into a rant now so I might close off here. It's almost 11pm and after a week of working and a hubby who is injured and cant help around the house, I'm pretty tired and probably not making sense.
Yours, mind spinning, completely lost and not sure which way to turn
Lani B
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I am so sorry your family is going through this. It is a very tough time indeed. It sounds to me like he wants to just go, and not keep dealing with all the troubles and pain he is dealing with. I would try to respect his wishes and talk to the doctors about making him as comfortable as possible. When he is on dialysis they could give him benedryl to allow him to relax/rest during dialysis and that will help him be more comfortable while doing it. They could put him on pain control, so again, he is more comfortable at all times. I guess what your husband needs to do is sit down with him and talk him in depth about what he wants, so you guys can express it to the doctors on his behalf and get his wishes across.
Good luck hun.. I wish I had more advice to offer you, but I can offer my thoughts and prayers and hope everything goes smoothly. :grouphug;
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Thanks Angela, and thanks for reading my post I just realised how long it is...
I think what I may do, now I know what my father in law wishes, is to give my hubby a little notepad to carry around with him in his wallet. I can put in it things he has to ask the doctor or tell the doctor and he can tell me the answers to any questions. It's hard going through a third party to find out information especially as it is his father, not mine and he is having to ask the hard questions and get the answers he might not want to hear. I'll also ask him to ask the doctors about his pain medication and can it be upped if he needs it and how we get that done.
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It sounds like a nightmare - sorry you have to go through this. I feel bad for the father-in-law too. I am not sure I could bear all he's been through recently.
It sounds like he needs a living will and a medical power of attorney. Your husband or his mom can do these themselves or find a service online.
A living will is the first step to making sure you’re prepared in case of a
medical emergency where you cannot make decisions for yourself. A living will
simply spells out in detail exactly what kind of medical procedures you do or do
not want performed on you. It also indicates whether or not you wish to be
resuscitated and what your wishes are regarding a variety of other medical
conditions, including comatose and a persistent vegetative state.
The second part of making sure your wishes are known is naming a medical
power of attorney. A medical power of attorney goes by many names,
including health care proxy and advance directive. They all describe the same
basic principle. By naming a medical power of attorney, you’re simply
designating someone to act as the sole decision maker in your absence. Most
frequently, a spouse is named to this position, although it’s usually wise to name someone else in
reserve in case your spouse is incapacitated as well.
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Lani, I went through this with my dad. He passed away 4 months ago. We were at a dead end with his treatment. My sister Cath asked him if he was done, and he said, "pretty much" (could only make out his mouth movement).
Similar to you they put my dad on life support - breathing tube. My dad had signed a DNR, yet they STILL asked him - while he was in desperation mode - if he wanted a breathing tube if he stopped breathing. He shook his head yes. That night, they put him on life support. We got there as soon as we could the next morning and through questions and nods from dad found that he wanted OFF! It is a very long story about his two months in the hospital. My dad the previous day to this happening was about to undergo brain surgery to biopsy his brain tumor. Surgery never happened - his wbc was too high. He kept getting infections in the hospital - just saw a story on the news last night about what a big issue it is and that hospitals are getting better cleaning policies. geez, ya think?! Well my dad went into sepsis shock due to the infection - got him through that. He had copd, diabetes, and other issues as well. The brain tumor was found about a month into his hospital stay. He started really going downhill a year ago from a stroke - which he never admitted to, but after about a week we noticed his inbalance and eye droop. Got him to the hospital right away. He was in for about two weeks then.
When dad decided he'd had enough (during his two month stay he went back to emergency THREE times!) they started him on comfort care which meant no more pokes for sugar, no antibiotics, no iv fluids, or steriods to keep the swelling down in his brain. He hadn't been eating for over a week by then. They did keep him on oxygen. He was on 100% oxygen for at least four days before he passed. I've read that it's an issue just having it that high. So much went on, so many questions. Of course that's when the morphine started. They also gave him an anti-anxiety drug. I can't remember the name but the nurse said it would help him a lot. My dad was with us another three days after they took him off the breathing tube. Mind you, he had A LOT of other issues going on.
We also had the money issue with burial. My sister is the executor and poa - not that it was only her decision, but we had dad cremated. Mom has the ashes and someday will throw them over their favorite spot down at the lake. Burial is so expensive and is a very personal choice. I am just sharing my experience.
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I will be blunt but don't take that as I don't care because believe me I do care and I understand.
If FIL has given up as I don't blame him, then you need to make him comfortable. There will be family feuds no matter your choices made. If money is a problem then there are places to go for assistance, if he is not eligible for assistance then the family needs to come together. If they choose not to do that it is under no control of yours.
Please know I have been there and those are the facts. I wish the family could understand the anguish you are feeling over this, and put their own problems aside for the time FIL has left.
My apologies if I was too blunt.
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I think he may be giving up and I'm worried that he may be refusing to eat to let himself die and I don't want him to go in such a horrible way.
Lani, my mother too refused to eat. About a year after she had a cerebral hemorrage that left her in a mess. She had
been in the hospital, after falling out of her wheelchair, and she stopped eating in the hospital It was not a horrible death, in fact it was a very easy and simple way out of her situation. She stopped eating around the
first of July and died on August 17. She was made comfortable with pain meds and I did have POA which simplified
any controversy. She did not want to be put on life suporrt and she did not want to die in the hospital. She died
with me and my children around her bedside, with our hands on her, telling her that we loved her and would see
her in heaven. I was very grateful she was able to go when and where she wanted. So if possible try to
accomadate your FIL's wishes. There are some things worse than death, so if I were you and your husband,
I would do whatever I could to help him find peace and rest.
My prayers are with all of you. God Bless You.
Love, Mimi
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Thanks for the help and input. And Mimi thank you for letting me know about your mum. I was afraid that his refusal to eat would cause him needless suffering.
My hubby and I are prepared for the fact that he has made his decision and now its been expressed to the medical staff at the home it should help us. It is now in his medical records. So it's a wait and see. I have to admit that we've accepted his decision as it is his life and he is the one that is dealing with everything. I think my husband holds his father's power of attorney but I'd have to check.
Also, and I don't want to sound callous here, but when he does pass on it will make some of our life a little easier. No more hospital trips, no more of hubby going to see his dad and our daughter asking "where is daddy", no more calls at 3 in the morning. I hope I am making sense here. I am just wanting to make the time he has left as good as we can but allow for him to let go when he does decide he has had enough
Hope that makes sense
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Do you all have Hospice where you live, maybe they can step in and help care for him, your an amazing woman Lani on behalf of your father-in-law, "thank you" :cuddle;
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Thanks Nina for the compliment but I don't think I'm amazing I do it because he is family and it's the way I was raised. My parents brought us up with the belief that you dont abandon family which is why i dont understand my in-laws.