Update on Mark.
So, I thought everyone might want an update on Mark's condition. It has been difficult for him with the amputation as he has a lot of phantom limb pain. He wants to transfer to a different facility. The dialysis is really difficult on him and for about two days afterward he will sleep and sleep. He still needs blood pressure meds or his BP drops too low. As sad as it is, we will need to get divorced so he can be on Medicaid to cover SNF. We do not have any assets, so I guess that is a blessing in a way. He still needs assistance to roll over and needs to be strapped into a wheelchair to sit up. His neuropathy is getting worse especially in his hands. He also still has plural effusion from the kidney disease. I have decided to still be an advocate and friend but did not realize over the three years that his health has declined his much it has beat me down mentally and how much stress I was under.
They think he might have the beginnings of mental decline as he will do a lot he can't remember like not knowing how to operate the phone he has had for the last three years, forgetting how to do Apps. Plus he cannot bathe, shave, or toilet himself. I think he has accepted he will need to be in care. I pray his cancer stays in remission, he has not hit the five year mark to be more in the clear. I can't speculate on that, but I hate the situation and the life we had for 15 years ending on this note.
I am trying to manage my own anxieties and still function. I thank y'all for your kind thoughts and wise words. I am getting more accepting of the situation as it is and taking it as life felt like throwing a curve all. I will make it through.
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I don't think that you should be POA because of your husband's reluctance to accept the realities of his failing body.
If, as medical POA, you made decisions that were in his best interests, they could well go against his wishes, or if you did what he wanted you would be aware that those decisions could end up causing more pain and suffering. Either of those scenarios could cause you mental and emotional anguish.
So, I think you're right not to seek POA. However, you can still advocate for the man you loved, even though illness and pain have changed him so much.
To be perfectly honest, with what you have related, it doesn't seem as if his body has much fight left, even though he doesn't want to give up on life.
My dad was about a decade older than your husband when cancer caused near total paralysis. He wouldn't consent to a DNR. He was in denial about his condition and the likelihood of imminent death; he wanted to live forever.
My mum, on the other hand, readily stated that she wanted a DNR, having seen the damage and pain caused by resuscitation on a frail and elderly body, which isn't capable of recovery in the same way as that of a younger body. I'm only in my 50s and I want a DNR in place now.
I didn't have POA for my dad and I don't have it for my mum. But I have been an advocate for both. A couple of health and social professionals have pointed out that I have no rights and no say, but most nurses, doctors and social workers have listened to me, consulted with me, and enabled me to speak up for my parents when they weren't able to.
Whatever role you choose to take, I wish you and your husband strength and peace.
The divorce is really sad from a man three years ago who was mobile, walking on his own. Yes, he was overweight and did have his kidney problems but otherwise fairly stable. It is crazy how in three years he gets lung cancer, has to have a hip replacement (that failed), gets a wound in his leg that leads to bone infection and then amputation. His side of the family has pretty rotten luck medically. Only two of his seven siblings have not had cancer, thus far. His mother was fairly young to pass away, she had a sudden heart attack in her 60s. He had the double tragedy of losing his only daughter to an overdose in October.
I know I have to rebuild my own life as I am about to be 38 in June, so fairly young. I have no idea how long he can or will live but this is the longest he has been hospitalized. He will be 62 at the end of March, so yes, he is pretty young to have the whole host of problems hoisted upon him. He didn't make the wisest choices in his younger years (the smoking led to a lot of it, sadly). I did ask if they had discussed hospice or pallitative care with him and he said they had not. I will need to talk to them in person. As for the Medicaid. if he is not married to me, he would qualify as was already on SSD when we married and far under the limit as a single person. I know I can make a decent amount of money, but I will not be able to pay out-of-pocket long term care. They asked him is he wanted a DNR order and he declined.
They did a bunch of X-rays and other tests because of his back pain. He has had stenosis and other back problems for years. They actually said they would have to do a surgery where they went close to the aeorta to fuse the discs but that the recovery process would be about two years. I was told they also wanted to look and see if there was an infection in his artificial hip.
I have in fact thought of you.
I am glad you will face the reality of the need of a divorce here. This is not uncommon though we seldom hear about it, and in fact it is often kept a secret.
My own friend did this. His wife had a near drowning and remained in a coma for many years afterward. It was necessary due to the costs for him to divorce her, while this remained secret to almost everyone in their sphere.
I cannot think that any of this bodes well ongoing. Mark has chosen to continue this fight for his life, but you are seeing some of the sad realities of the treatments he is needing. I am hoping that there is someone who, after divorce, may take on POA and management of things for you.
It is a horrific thing to say, but honestly the man you married isn't there any more. You are no longer wife to him, but caregiver. The whole "in sickness and health" thing sounds so good, but the truth is that in this day and age most people do not any longer sacrifice their entire lives to the illnesses of family members. For better or worse, that is simple the fact of it all.
Hope you'll continue to update us.
“For better or worse “ has individual meaning for each of us.
It isn’t necessary for anyone to suffer endlessly.
I don’t want anyone to sacrifice their life for me when I am near the end of my life.
I couldn’t take comfort in knowing that someone was miserable in order to be there for me. I want others to know that I desire for them to freely live their lives.
I find it interesting how some people feel that suffering is a character building experience. Others crack under the pressure. Others feel obligated to suffer by others’ side until the very end.
I honestly don’t care if someone criticizes me for my beliefs or behavior.
While everyone is entitled to their opinions, I do not have to agree with them.
We achieve peace by being true to ourselves.
It seems a quick moving cancer or other sickness that took him quickly would have been his best option.
It doesnt sound like he is going to live long enough for the divorce to be finalized but you never know with all the medical interventions they do on people.
You are in my thoughts. It is hard to watch someone you love and care about decline like this.
Wishing you peace.