I’m so sorry for all the troubles you and your family and Jim are going through.
I hope his passing is peaceful. Take Care.
It isn’t clear if Jim can come home. He is confused and upset. He removed his IVs last night. Got out of bed and went to another patients room and peed in the sink.
The home care nurse would only be at the house for a few hours a day. Jim is a big man. Despite his illness, he is still strong. We have 2 year old twins at home. My wife would need to care for Jim and the twins.
My wife is waiting to talk to the folks about home care.
I can’t miss anymore work. Burned through my vacation and I cannot get leave because Jim isn’t a relative.
Folks, if you don’t have a will and end of life stuff worked out, do it now. Don’t put this on your family when they should be worried about other things.
So now I wait to find out about home care. I need to get to the store, we are running out of stuff. I got like 2 hours sleep, I couldn’t sleep, my wife called a couple times and my son’s blood sugar crashed last night. I need to keep looking for the will. I don’t think there is one. I need to pick up my wife and take her home for a bit. She needs to see the boys and take some time to sleep and shower.
Slee
Condolences and best wishes, sleestak.
Based entirely on my own experiences – the hospital is going to push-push-push to send him to your home so he’s no longer their problem. Unless you are extremely wealthy, or have a small army of relatives/close friends to help out, getting adequate home care for someone disoriented/demented/etc. is extremely difficult.
If they’re going to try to saddle you with this insist on talking to the hospital social worker and make sure it’s understood there are infants in the home that may be at risk from a potentially delusion/hallucinating adult. I know you’re already thinking along those lines. Of course, it’s not malice on Jim’s part, but his brain isn’t working right. Accidents can happen. You need to keep everyone safe. It’s apparent from your posting history that you are always trying to keep people in your life safe. It’s one of your best qualities.
I know there’s a cultural ideal of dying at home, but sometimes the best option is a “rehabilitation facility” with a lot of visiting from the folks responsible for/caring about the person in question. I had to have my spouse in a hospital in his final days which was not what we hoped for but he was cared for, not in pain, and I could be with him as his spouse and best friend and not as an exhausted wreck. It turned out that was the best option for us. What I’m saying is, try to keep an open mind about options.
Has anyone talked to hospice? It’s not always an option but they might be, and might also have suggestions for getting help, or getting him inpatient care as needed.
NOW is the time to call for help, to not ask but DEMAND you be told what options are out there, and get your ducks in a row. Which I know (from experience) is terribly difficult with all the chaos and emotion.
If he is not competent to handle his own affairs ask about what would need to happen for you to be declared his guardian or whatever if you sincerely want to/plan to/feel obligated to take this on.
And when/if there’s a GoFundMe for funeral expenses or whatever be sure to let us know (after clearing it with the mods, first, of course) - I don’t have much to give, but I can kick a few bucks your way, so can a lot of other people, and it will all add up.
I second the suggestion of hospice. They can provide aides at home to help and there will be no cost. Talk to the social workers and do not let the hospital discharge him without adequate home care set up (round the clock aides if needed-this is called continuous care and agitation or restlessness of the patient is a qualifying diagnosis). Make sure you take care of yourself too (remember to always put on your own oxygen mask before assisting others). Finally, use the social workers at the hospital and hospice is you get it to help deal with any legal issues. They have done this before and can help.
I agree with broomstick: get the hospital social worker involved. She might even be able to encourage him to get his affairs in order.
You and your wife are wonderful people. Heartsick as you are and busy you are working and raising twins, you are treating him as the beloved family member he truly is. Everyone should have such friends as you and your wife.
I’m so sorry you, your wife, and Jim are going through this.
Broomstick is absolutely right to mention hospice care. They made my father’s last few weeks as pleasant as possible.
So I am at the hospital. My wife is at home for some much needed rest and twin time.
Jim is in a loop. He starts on wanting to go home. He then starts on the decathalon, I asked about his Olympic trial and apparently added that to the loop. Then it is his wallet. Then he asks about his car keys because he is going home…
I see glimmers of the old Jim, but they don’t last long. Phrases he used in the past. They get triggered and he repeats them.
As far as hospice goes, the hospital originally suggested that. My wife and I talked and if we can get Jim home and everyone is safe, we want him home. However it does not look like that is possible. If Jim starts thinking he needs to leave, or worse, gets angry, there is no way she can control him by herself.
The nurse I spoke with said that it they are trying to get it so he stays in the MICU. My wife and I spoke some and I think she agrees we cannot take him home unless there is a major change, which isn’t going to happen. Jim is fundamentally broken.
This sucks.
Headed back up to see if I can add another leg to the loop.
Slee
Perhaps there is some way the one or both of his dogs could visit him for awhile.
I just want to stress that hospice can help whether he is in the hospital, at home or in a separate hospice facility. They deal with people in all situations.
That is true. Hospice can be done literally anywhere, including a MICU if necessary. There is no question you could ask them that they haven’t already heard.
Forgot to mention something. They have asked Jim if he wants to go to hospice, he said no. Until the hospital can do their thing regarding competence, they cannot move him.
They moved him from MICU to a regular room.
Contrary to Broomsticks experience, the hospital is being great. Trying to find a place that works for Jim’s and us.
Now my son’s blood sugar is doing things that don’t make sense. I am tired and not thinking well. So I am going to have to be paranoid all night, which means not a lot of sleep.
Slee
Are you the person whose son was recently diagnosed with type 1 diabetes? Blood sugars can really go haywire when a person is under unusual stress, and whether your child can verbalize it or not, he is.
Hope he’s OK too.
My concern is that with no one to speak for Jim the hospital’s/doctors’ inclination is towards more and more intervention (unless Jim agrees to hospice). While that is usually the best course, for someone in their final days that is not always the case.
That is a spot of good news in all this - I’m glad that is working for you.
Yep, one of my twins was diagnosed as type 1 on 1/29. And yeah, he isnstressed. Mom is a stay at home mom and she has been gone. Add to that my wife’s oldest son committed suicide a little over a year ago. Then there was the step daughter madness. It has been a really hard couple years but we seem to be getting through it and aren’t taking it out on each other. I found a good one. Oh, and my Dad is slowly dying of cancer. And my Mom fell and cracked her head which lead to brain surgery and lots of cognitive problems. Plus i have a bum knee which I haven’t had time to fix.
As far as treatment the hospital recommends, it is none. They know there is nothing to do.
I just spoke with my wife. She doesn’t think he will live much longer. His heart rate is running at like 40 bpm. He is having full body seizures, mild but still happening. He is even less aware and still wants to go home. To the point he almost tipped over the bed trying to get out of the restraints. We talked and at this point the best thing for him is to pass. Jim would be aghast with the situation he is in if he were alert enough to understand it. Jim was always proud of being intelligent, self sufficient and capable. Now, he is none of those things.
Jim just needs peace. I hope he goes easy and soon.
And, even though I am an atheist, I hope I am wrong. I hope, though don’t believe it will happen, that I will once again meet Jim, and all the others whom i loved because they touched my life in a wonderful way. And we will marvel that we existed, and knew each other out of the billions of people that have lived. And we will rejoice in the friendship and be the perfect versions of ourselves.
Slee
He’s lucky in one respect, that he has a friend like you to memorialize him. I can’t imagine the stress you must be under especially with the worries over your child’s health. I have nothing to offer but my sympathy and the hope that your son improves and that Jim slips away peacefully soon.
Hugs to you and your friend, Slee. It’s people like you who make this world better.
I know it’s next to impossible, but be kind to yourself. Things are apt to go off the rails a bit when you are exhausted and stressed, just keep your priorities (your family (especially your child with health issues), Jim and yourself). The rest will figure out.
I took my twins to see Jim. My wife said Jim was fairly alert. They moved Jim from the MICU to a regular room as there is really no reason for the ICU piece.
He recognized the boys, said hi and wasn’t really interested after that. All he wanted to talk about was how the docs kept asking him questions about his family and finances and he didn’t want to tell them the info, he needed to talk to his doctor, who I will call Dr. S, because Jim missed treatments. If the treatments weren’t working, he needed to talk to Dr. S about the next treatment option.
I, as gently as I could, told him that there were no more treatment options. He said that if that was the case, he would accept it, but he really needed to talk to his doctor about the next treatment option.
Which lead back to the docs asking all kinds of info, which lead to ‘You go get the car, we will go home and I will see the puppies. And I have to get to work.’. Then go back to step one.
The nurses think Jim is coherent enough in the morning to sign a will. So my wife has a notary coming in the morning. Hopefully he will be good enough to handle that. He told me, and my wife separately, that my wife is to have his things. During that conversation Jim started talking about taking some of his guns (locked up in a gun safe that I will probably have to crack) and selling them, that he didn’t need all of them anymore. Just wanted to keep his gun and one rifle that I believe his Dad gave to him.
I expect there to be some ugliness. The friend I mentioned earlier who came into town. Well, she, I will call her M for the sake of making this readable, is talking about how she is going to get the guns. And some other stuff. One of his other friends wants his clarinet.
Jim told me and my wife M shouldn’t have anything. A little back story, M wanted to be in a relationship with Jim for years. She is a bit older than Jim, has had medical issues for years and Jim had absolutely no interest in dating her. M, before she left to go back home, was trying to use ‘Well, I have known him for 20 years’ as a lever to get control of what is happening. She can be pushy. She said she is coming back out on Monday and called and told me I needed to pick her up. Didn’t ask, told. Le sigh. That conversation didn’t go the way she expected.
The point of this is, can’t people fucking wait till he is dead before staking out the stuff you want? I get it if it is something very personal. But the guns? A clarinet you want to give to your son and has no emotional value?
I need power of attorney and control of his stuff so I can, hopefully, arrange to have him cremated and a service. If I don’t get it, the state will get the remains which we really don’t want. I cannot afford to do this right now. The twins, the diabetes, Jim being sick and unable to pay for things have me stretched thin. Jim doesn’t have much money, a guess would be $500 in the bank at most, and the stuff he has isn’t worth much, except maybe the guns. On the guns, I have no idea. Not a gun person. His cars are a 1980 ish Toyota and a 1990 ish Ford Explorer. The cars are worth maybe 3 grand. Jim also wants his ashes spread in the ocean in San Diego, where he put his Mom and sisters ashes. So if we do get him, we will have to head out there.
But…
A social worker was in asking Jim about relatives. Jim has none. There might be a distant cousin somewhere that Jim never met, but he has no other blood family that he knows. The social worked is trying to find a relative to handle Jim’s burial and such. *We *are his family but don’t have the fucking paperwork to prove it.
I really hate that I have to think about this kind of stuff right now.
And, to add to the mix, one of the dogs name China has been getting old and having problems. The dogs were Jims kids. China is getting bad enough that it is probably time to put her down. His other dog, Toby, has had medical issues his whole life and we cannot afford to keep him. I am going to see if there is someone who will take him but it is unlikely. We cannot take care of Toby. If we could, we would, but it just isn’t possible. Toby has a problem where is sphincter muscles in his butt don’t work. He barks and turds shoot out. He also has a lot of digestive problems which lead to some real issues, and messes (Imagine a dog with no anal sphincter muscles with severe diarrhea. Well, don’t 'cause it is really, really gross) . Between the two, it is a ton of work to keep him healthy and the areas he is in clean.
On the good side, one of Jim’s closest friends is coming in tonight. This guy isn’t worried about getting anything, doesn’t want to control anything and is a lawyer. He just wants to see Jim and will help my wife and I deal with some of the more insistent folks.
I did talk to the nurse from his doctors office. The doctor won’t talk to Jim but she will. The hope is that she can calm him so that he isn’t working himself up over a treatment that will never happen. We hope that talking to the nurse will ease Jim’s mind and he can be at peace for a while.
Slee
As Jim awaits his deliverance, his one fortune is he has people who care for him as much as your family, sleestak. If only we all did - take care of yourselves.