Jim's Update

[agate]

Rose, doctors are unbelievable. They apparently don't want to take the time to read through a patient's history. It's just too much trouble for them. I've heard this justified on the grounds that they see no reason to take somebody else's opinion on their patient--they're quite capable of making up their own minds about that patient, thank you. This is sheer nonsense. I hope that isn't your Dr. P's attitude but it does sound as if she overlooked the RA and the effect of that oversight has been serious.

My mother had RA and it was very crippling. She tried Motrin and other drugs available at the time (1970s-mid-1980s), even had a hip replacement (but refused to have the other hip done). I believe she settled for her old standby, aspirin, after trying other remedies.

It's hard to say much about a situation at long distance but it definitely sounds as if you need more help than you're getting. I hope that you'll be able to find the time and energy to start looking for some help.

It must be very difficult for you to see Jim in so much pain. I hope that things will ease up for all 3 of you--and that that doctor will feel so concerned that she'll work harder at trying to remedy the situation.

[stillstANNding]

I have been worried about you and Jim. Things are worse than I could imagine.

All I can do from here is let you know that I am standing with you and praying for you all - including the nice friend who comes and helps.

ANN

[Jeanie Z]

:) Not posting much. But you are all in my prayers every day. I pray Jim's pain goes away and that the Opdivo kills his cancer. I pray you get a helper soon too. Love, Jeanie :)

[Virginia]

Things move so fast in situations like this, that it is hard to find time to even find anyone to help you. But I hope that you will Rose. A neighbor came to me one time when I was going through my situation and said "We are worried about you. We are afraid you are going to go to the well one time too many". Try to get help Rose. I know you want to be the one to be with Jim every minute and do for him, but with Jon depending on you too it may realistically be impossible.

Just know that the three of you and your friend are thought about and prayed for by many daily.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Thank you all so much for your suggestions and caring.

GETTING HELP

This is a complicated situation for us. We are considered self-employed vendors to Jon. If we hire help, I will become an employer and all that entails. I don't have the energy, time or strength to do that.

Jon requires a nurse (or me and Jim) to provide his care. Someone who is familiar with G tubes, traches, colostomies, lymphedema, seizures, etc. Someone who knows how to suction a trache, administer O2, prevent aspiration during vomiting. I would never hire someone without medical credentials of some kind to care for Jon. I would have to be intensely involved in training and on call 24 hours as I am now anyway.

Jim's care is getting to the point where he also needs nursing level care. Of course, I'm not a nurse, although many doctors and nurses have asked me if I am through the years. I just have nearly 50 years of experience in caregiving and being in hospitals, ICUs, etc.

In 2012, Jon came home from ICU with a PICC line and IV infusion of antibiotics. His nurse taught Jim and I how to give the infusion in a one hour training session. We took over and gave him infusions for 6 days.

We have had negative and traumatic experiences in the past with respite care nurses and with live in shift care for my elderly aunt. So, I get very nervous about hiring help.

Several of our friends have volunteered to help us, and as time goes on, we will probably call upon them for that help. Help in the form of going shopping and running errands, taking Jim for his treatments, cleaning our home, doing laundry, cooking. The thing is that these friends all live quite a distance from us, like a 2+ hour drive or several states away. And they all have very busy and full lives, with their own health issues and life challenges.

Our friend, who turns Jon, has been part of our family for 20 years. His parents lived 2 doors down from us, and their family adopted us. They are a loving, caring, supportive, ready to help any time family. And, John, our friend's name, is one year older than Jonathan. They are best buddies and now brothers.

John has flexible work hours, and he has transported Jim to all but 2 of his appointments, tests, and chemo. He lifts and moves things for us. Asks us what we need. Volunteers to do anything. He is a God-send and we love him like a son.

So thank you for your prayers for John. He truly is an Angel on Earth.

I'll try to schedule the box pick up day on a day, when John is turning Jonathan, and I know he will cart them all out to the curb for me. He'd probably even break them down. (And no, I'm not even going to attempt that. I cannot do all of that bending and stooping, standing. I'm an old lady, and the garbage company should have services for Seniors.)

JIM'S KNEE

We have determined that Jim injured his knee coming down the stairs after his shower a few days ago. He turned the wrong way on his leg, when he reached the living room floor.

Much of his other joint pain has seemed to have dissipated. He still has aches, but it's not as hot and intense as it was after the infusion.

Some of his pain is from positioning on the futon. We have tried an assortment of pillow arrangements, using his wedge to keep him upright. We've tried putting a pillow under his knees. Applying a cold pack for 20 minutes every 4 hours. Witch Hazel. Aspercreme. Heat.

But that knee is just swollen, and it's so hard for him to walk. I think we're going to have to use one of Jon's old wheelchairs, until Jim's knee heals. Of course, we have no room for it in our house. Ugh!

All day, we are problem-solving, trying to find ways to make him more comfortable, reduce his pain, help his mobility. We've tried compression, but he says it hurts.

I think he needs to see Dr. P, and perhaps he needs an x-ray to make sure he doesn't have a fracture. Wheelchairs are available at the medical center, as are assistants, so he won't have to walk. John will transport Jim and be there to assist him.

Thank you all for your prayers, love, support and encouragement. We are so grateful for your friendship.

Love & Light,



Rose

[Tamie]

Rose, you are daily in my prayers. I think about your family and what you are going through and wish I could help you in some way. Our lives seem to mirror one another in so many ways. Please know that you are never more than whisper away from so many here that care about you, Jim and Jon.

[callyflower]

Hi Rose,

It makes me sad to read of your struggles. If I may offer you some suggestions as an OT, a person who just saw my mom through to her end of life, a person with a life altering disease (MG) a mom of an adult dd with autism and most recently, a breast cancer fighter:

1. Call one of Jim's docs about getting home health for him. He would likely qualify for nursing, an aide, and perhaps therapy to teach him body mechanics and pain control techniques as well as a program to conserve energy. Home health can often communicate the complex needs of patients to the docs more efficiently.

2. Start lining up help for Jon. You need it and will need it for the foreseeable future. You may even need to consider giving up sole caregiving through this crisis. I know it's hard to do that knowing that whomever takes over will not be "you" and I also know that YOU will not be "you" if you continue to force your body to perform at this level.

3. Please consider finding someone who will stay with Jon during Jim's appointments. He needs you, no matter how brave he is. Be there to take notes and be Jim's eyes and ears. Be there as this is very important.

4. Prioritize. This past winter, I was very ill with MG, my mom was dying, and my daughter became mentally fragile. I also had two elderly dogs who were dying, and since have passed. We let the house go. We ordered out as much as possible, we accepted help. I even hired in complete strangers to watch Mom when I couldn't. It all worked out and now with the crises averted the house is clean, I'm cooking meals, I've tended to my MG symptoms, and my daughter is getting help. I did things I never thought possible. I know you do that every day, and I hope you can dig deep now, knowing none of this will last forever.

Hugs,

C

[Earth Mother 2 Angels]

((((((Callyflower)))))) ~

I’m so sorry for all that you’ve endured, for your losses, your health issues, and your daughter’s challenges. I’m praying for you. Is your cancer in remission? I hope that you are receiving excellent care.

Thank you very much for your suggestions.

If Jim would qualify for home health, his nurse would be Jon’s nurse. She is already helping us in an unofficial “friend of the family” capacity. I’m not sure what more can be done for Jim beyond what we’re doing.

Jim was feeling a little better yesterday, and he finally got a good amount of sleep last night, but he woke up in excruciating pain this morning. Every bone in his body is screaming with hot, searing pain from RA. He’s trying to do stretching exercises, but it’s just too painful for him. I managed to get him into the recliner this morning, with hope that he will get some relief in the upright position. His only pain medication option is Tylenol, and it’s not really touching the pain at all. Meanwhile, we’re doubling up on the CBD oil.

We have clearly articulated Jim’s pain and Opdivo reaction to Dr. P, and she has assured Jim that she is working on figuring out a way to help him. Beyond this, I don’t know what more could be done, nor that a nurse could advocate better for him than I am and Jim is for himself.

Dr. P schedules Jim’s appointments in the morning, because that’s when she sees patients. His appointments coincide with Jon’s needs for medication, G Tube flushing and returning to the Gtube feeding. I have to be here to care for Jon. It’s not like someone could just come in and sit with him for those 2 hours.

I try to get Jim to use our cell phone during his appointments, but that hasn’t worked out, because Dr. P is overbooked and only spends a few minutes with Jim. The Nurse Practitioner spends more time with Jim than Dr. P does. Dr. P did call me during Jim’s last appointment to answer my questions, but she didn’t really have a lot of time to talk to me.

I would love to be with Jim for his appointments and infusions, but it’s not possible, because of Jon’s needs. I wish I could clone myself. During his chemo and Opdivo infusions, Jim called me several times, so we can at least be together in that way. I also talk to his infusion nurses.

If Jon couldn’t receive care at home, he would be in an acute care facility. As I said in the above post, his needs are severe and intense, such that he needs a medical professional to provide his care.

And, as I mentioned, we are considered to be self-employed, and anyone we would hire to care for Jon would impact our income and place me in the position of employer. I’m not able mentally, emotionally or physically to go through that bureaucratic process. It’s mind-boggling complicated.

I do prioritize every second of the day. The stacks of laundry are testimony to that. I have to cook for Jim, because he is malnourished. I have to keep the house clean to prevent infection. Jim and Jon are sensitive to dust as well. I actually dusted the window sills and floor on the side of the futon at 10:00 last night, while plugging in Jim’s heating pad. I realized I hadn’t done it for several days.

Our schedules are unpredictable. For example, Jon didn’t fall asleep until 10 this morning. John was planning to visit this afternoon to turn Jon, but Jon will likely be asleep. Jim dozes on and off all day and evening. This makes bringing in help more difficult.

I have considered all possibilities that might work with our reality. There just aren’t that many options for us.

Thank you again for your insight, and please know that my prayers are with you and your daughter.

Love & Light,

Rose

[callyflower]

Hi Rose,

Since Jim is not driving and is essentially homebound except for medical appts and has needs for skilled services (medical management, medication management, personal care) he is an appropriate candidate for home health, in my opinion. You can likely call the doc tomorrow and get it set up as the main requirement is to have a face to face appt within the past 30 days.

Thank you for your concern for my daughter and myself. My daughter is getting help from a new doc and treatments and we have some hope for improvements. As for myself, the cancer does seem to be gone for now. It was in an early stage and I was extremely aggressive with surgical treatment and that was all I needed to do. Now I'm working to prevent/delay a recurrence since it's been proven I can make cancer. I am fortunate to have found agreeable and capable docs.

I hope you and your family have a peaceful week with less pain and more rest.

Hugs,

C

[funnylegs4]

Hi Rose,
If swelling in the knee is the problem, look into "Napolea" Here's an article about what it is and what it does https://nopaleaeffects.wordpress.com...ts-of-napolea/
This stuff is the best! I had pain and swelling from bad joint alignment and this stuff really did the trick. I'm not sure but it may also bring the RA inflammation down since it works in all parts of the body. I also found a bag of frozen peas to be much more effective than a regular ice pack for knee pain. It lasted longer.