Follow
Share

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.



DoggieMom, I'm glad you are seeing a way forward. I'm sorry about all the difficulties that you and Mark have encountered, and I hope you'll keep us posted. You have my sincere good wishes.
Helpful Answer (0)
Reply to Fawnby
Report
DoggieMom86 Mar 25, 2024
Thank you, I appreciate your feedback. No one said life was going to be easy, well it's not right now, but reality is often cold. I am not sure who could be his POA as he has no other children and most of his family is not going to get involved. His two living siblings don't have anything to do with him. I really am unsure where to go with that one unless his nephew (different kettle of fish there dude) does it and that make a lot of problems. I might see if his niece could help me figure it out as she had to take care of her mother, Mark's sister, once her cancer got so advanced it spread to her brain. Rexann (the niece) also had to take care of her father who had brain damage from being a painter (in the days before they wore protective equipment). She might know more about navigating and she is more well-off $ wise than me. She might not take responsibility but maybe some solutions in any case.
(0)
Report
His blood pressure was insanely low yesterday, the top number in the 70s and he has gotten sicker in the last week with the runs and loss of appetite. I don't know whether he has a bug or not. I still love and care about him, and will help advocate for him, but in a friend way versus a wife way. You are right that it's not a marriage anymore. Someone asked about the cancer, it hasn't come back, but it could especially considering it was stage IIIB. Personally, I kind of fear the some of the fluid in his lungs could be malignant. I know it is a lot of health problems and he did have some when we got married, but not to this extent. I think a lot of it snowballed from the cancer and the kidney disease. I know he is ill because usually he will make a point to call me, right now he can't even really grip a phone.

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.
Helpful Answer (1)
Reply to DoggieMom86
Report

So sorry you need to divorce you husband. For his age, such a sick man. Thanks for the update.
Helpful Answer (0)
Reply to JoAnn29
Report

Thank you for this update.
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.
Helpful Answer (2)
Reply to AlvaDeer
Report
NeedHelpWithMom Mar 24, 2024
I love your honesty, Alva.

“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.
(0)
Report
Wow that's quite a lot of medical issues your husband has. Have you discussed end of life care with him at all? If his cancer comes back will he seek treatment. If he has mental decline these are good things to ask now so you know what he would have wanted when he was lucid. I just can't imagine living with all this.

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.
Helpful Answer (2)
Reply to sp196902
Report
DoggieMom86 Mar 25, 2024
Yes, I did discuss it with him what to do if the cancer comes back. He said he wants to try to fight it. I know there is no way I could afford the deductible on proton therapy again ($5,000) and his lung is so scarred from the first time around, I don't think it would help matters. He would probably have to do chemo, and maybe he could go onto another round of immunotherapy. They have done scans and not found cancer, thus far, but they would really need to do a full PET. They are a little leery that there is something lurking in his bowels and they are also going to try to figure that out. I am just concerned if he would have the strength to go through all that as the combo of immunotherapy, chemo, and radiation really did a number on him last time and still is having health effects. He still has radiation pnemonia in his chest and he had COPD before, but now he also has scarring from the radiation. They do have to give him blood pressure medication every few hours or his blood pressure dips dangerously low.
(0)
Report
Thank you for your update. This is so sad all around. Sending you a bazillion hugs. Please lean on the forum anytime you need support. I know that this has been a long and difficult journey for you and Mark.

Wishing you peace.
Helpful Answer (2)
Reply to NeedHelpWithMom
Report

Ask a Question
Subscribe to
Our Newsletter