Sherry, thank you for the update. Glad you'll both be getting a bit of rest.  It can be difficult to find during these times.  Nice to hear you can still make each other laugh.  Glad you have all those angels to help out.  Hopefully you'll find an aide to also help.  It was great being part of the Class of 2014 with you both and meeting in TN.  We'll be in AZ in April and we'd love to visit if you're up for it.  Take care!

BTW, here's your classified ad, beautiful home on wheels!!

rv-dreams.activeboard.com/t58785120/2013-trilogy-5th-wheel-gmc-dually-truck/

Great to hear from you and get an update on both of you! Please know you are both always in our prayers!

Hugs to you both!

Bill and Kelly

Sherry,

Think of you guys often and appreciate the update. You are both in our thoughts and prayers!!

Hugs...Cori/Greg

Sherry; please let Jesse know that I am lettiing him use some of my angels! Really, say Howdy from me. You have inspired me to let go and live my lifeo the fullest. GOD BLESS YOU AND JESSE. We never had the chance to meet face to face, but met heart to heart. Hope you both peaceful rest so the bodies can recharge.

We so love our RV-Dreams family! Your supportive words and prayers warm my heart.

Yesterday the Social worker from the hospital called me in the afternoon and asked for my permission to talk w/Jesse about being admitted to hospice as they feel he is declining rapidly. I told her she has permission to talk with him about anything she thinks is important but do NOT imply this is in any way for me because he would agree if he thought it would help me. I told her I've had 5 good nights sleep, that I am a VERY strong woman, that this will be Jesse's choice because whatever he wants I support, that he has declined rapidly in the hospital in large part because I don't feel they are making the right choices., that I WILL find alternate night help so I can sleep alternate nights.

They had him all gorked up on morphine, with no stool softeners ( standard operating procedure according to my doc son; morphine made his sick for 3 days before they changed it (common side effect) which is causing him to lose weight; that his breathing was shallower because he's at a much higher elevation and they found his bipap has been hooked up wrong the whole time! I was told to stay home yesterday because his BP goes up when I arrive. Well, two days in a row he either threw up right before I arrive and shortly after! Enough ranting, I'm going to go see my man - talk this over with him and continue making calls to find help.

Sherry

WestWardHo wrote:

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We so love our RV-Dreams family! Your supportive words and prayers warm my heart.

Yesterday the Social worker from the hospital called me in the afternoon and asked for my permission to talk w/Jesse about being admitted to hospice as they feel he is declining rapidly. I told her she has permission to talk with him about anything she thinks is important but do NOT imply this is in any way for me because he would agree if he thought it would help me. I told her I've had 5 good nights sleep, that I am a VERY strong woman, that this will be Jesse's choice because whatever he wants I support, that he has declined rapidly in the hospital in large part because I don't feel they are making the right choices., that I WILL find alternate night help so I can sleep alternate nights.

They had him all gorked up on morphine, with no stool softeners ( standard operating procedure according to my doc son; morphine made his sick for 3 days before they changed it (common side effect) which is causing him to lose weight; that his breathing was shallower because he's at a much higher elevation and they found his bipap has been hooked up wrong the whole time! I was told to stay home yesterday because his BP goes up when I arrive. Well, two days in a row he either threw up right before I arrive and shortly after! Enough ranting, I'm going to go see my man - talk this over with him and continue making calls to find help.

Sherry

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 Maybe get him to another hospital would help! Still praying for you all!

You are in our thoughts and prayers....GOD will continue to comfort and guide you. GOD Bless, Les and Sue

Again I thank you all for your public and private support. Wednesday morning Jesse called me and said bring the van today when you come because I'm getting out of here. A friend went with me and we finally got him discharged about 12:30. He was sick just before we left and again when we got home. He was so weak he could barely operate his power chair. I called our Home Health Nurse and asked her if she could come the same day. Fortunately she lives in our neighborhood and came within the hour. She set up a plan of Milk of Magnesia, enema and said he was dehydrated. We tried to call his primary care doc but she's out for a week. She left and we did all she recommended. She called at 6 and again at nine and again on Thursday. He seemed better in the morning but got sick again at noon. I called her and she said call 911 and take him to local ER. He got saline by IV and nausea meds but that particular doctor felt patients did better at home so ordered a full dose of Miralax every hour for up to 5 hours. (Pieere, you were right!)
Finished the last dose with no results at 11:30 and we both dozed off. He woke me atv 2:15 saying if you don't get me to the hospital now I'll be dead by morning. Full moon and ER was jammed when we got there. Finally at 5:30 another doc came in and ordered procedure to clean him out. Jesse wanted Rotorooter! Huge improvement. Got him home and showered and he had a huge nose bleed.

Today he is eating clear fluids, Popsicles like mad, a few saltines, ice water and requested chunky chicken soup. His sister came over and took care of him while I slept and ate. We have turned the corner and he has a bit more strength. I hope with a few days food and more rest and liquids we can undo some of the damage done. No hospice needed yet!

One of our neighbors is a recently retired rehab and palliative care doc who has offered to guide us and another neighbor has made calls to respite agencies if his sister gets sick again. It's hard for me to let friends help but I've learned to let our family on here and in our neighborhood help.

Good news!
Sherry

Prayers tonight...for you , Jesse, and Pieere's angels. God bless. Pat K

Im so glad that you are both at home. Please do take advantage of both respite and palliative care, both will help you and Jesse during this chapter/journey. Love and hugs, Pam (and Red too!)

Sherry and Jesse; sometime make me wonder if the hospitals send one home because they've run out of solutions! I am pleased to hear that you have some where to turn with the health care aide. Bless you both! I believe in angels and most are the human kind! The ones at the Glasgow KY. Community hospital saved my life and the ones at the Alvin C.York VAHC here are doing a decent job. I had to get a wellness PCP with CIGNA and I believe my VA PCP does more thorough treatments.

Sherry and Jesse - You are in my thoughts and prayers. I hope you're both getting the rest you need and feeling better. Each day we have with the ones we love is a blessing. God bless you both. Penny

Oh darn I started a long update but got interrupted and it all went away. I'll try again and may post bits and pieces because I'm sure I'll get interrupted again.

We love and miss our RV-Dreams family and sincerely appreciate your PM's, comments and emails.

Just over a year ago we attended the Spring RV-Dreams Rally in Seiverville and Jesse walked back and forth to meetings and fire circles and planned to come back to this spring's reunion even if we had to fly but he can no longer travel. These days it's the powerchair & hospital bed surrounded by machines and lift. We had traveled and stayed overnight in handicapp accessible hotel rooms but can no longer as I am unable to get him out of a regular bed. We've added an attendant control to the powerchair as he can barely move the tiny control. He's lost a lot of weight, is eating very little as its tiring so we're tube feeding mostly; he is completely dependent on others but still has the most amazing attitude. I'm sure I wouldn't be as funny or cheerful. While he can't speak very well he loves visiting with friends - especially the guys solving the worlds problems - as he's otherwise surrounded by his sister, PJ, and I. We're so grateful for her help. We also have a home care nurse who comes once a week and is on call 24/7 and is awesome. He's had friends and family visit from all over the country and enjoyed them all

A March visit to his specialist indicated that his ALS is progressing about twice as fast as normal and the doctor's goal was to have him make it thru the holidays. I think the doctor was being optimistic as I see daily changes and I'm estimating he has three months. His bipap machine on at night would be a big help but he can't tolerate it because he's completely unable to move and he realizes it's shortening his life. He lets me put it on him while he sleeps during the day if I'm right there. I still have to get up to attend to him 6-8 times a night so PJ relieves me for a nap during the daytime. His DNR is on orange paper as required by the state of Arizona and the refrigerator as suggested. I'm thinking in July we'll have hospice start at home.

This is an awful disease and the average lifespan after DX is 3-5 years. Jesse might make 2 years.
Our beautiful Trilogy is still for sale and I have a waiting list for people who want the truck. The prices has been dramatically reduces so it's a completely upgraded 40ft 5th wheel if you know someone looking for a bargain full time unit.

I enjoy checking up on our friends on here occasionally - it's great to see your adventures and see you resolve your tribulations. Thanks again to our wonderful friends and wishing you newbies lots of wonderful adventures.

Sherry

There wasn't a day that went by at the reunion when we weren't thinking of you and missing you both! Big HUG and love...Pam & Red

Sad to hear. At least you guys were able to get out and enjoy life a little bit.
I just lost a friend to Cancer at the age of 66.......
Life's way too short.

We also miss you both and wish we could've visited while in AZ.  As it turned out, we ended up caring for his parents.  Being a fulltime caretaker is tough.  You're amazing.  I'm glad met at the rally and that you were able to see amazing things after that.  You're in our thoughts and I hope we'll be able to see you in January.  I'm glad you have help and can get that much needed nap in.  If we know if someone looking for a rig, we'll pass it along.

Sherry and Jesse,

You continue to be in our thoughts and prayers. I have tears in my eyes as I type this. We so enjoyed the 3 weeks last fall and the week this past spring that we spent in Cottonwood with you. We do plan to be there again in the fall and look forward to that visit, regardless of the situation.

We love you both and miss you!!

Hugs to both of you.

Sherry, so much we could all say, but our prayers continue for you.  We feel blessed to have met you both at the rally last spring, and won't ever forget your kindness and advice.  I believe God gives us special people on earth to inspire us and without a doubt, you and Jesse are some of those people.  Take care of yourself too, and we'll keep you both in thoughts and prayers.   

Both of you continue to be in our thoughts. Take care.

Hope this won't offend anyone but I wanted to share Jesse's humor. Yesterday his home care nurse came by to see how he was doing after his recent lung infection. As always, she checked heart, lungs, etc. and asked, "how's the urine output, yellow and clear?" He said yes, except for the goldfish!

Can't keep a good man down

Sherry

Thanks for the update, Sherry. What a wonderful love story you both have shared with all of us. We think of you both often, and I will never forget Jesse in that skirt, Hawaiian shirt, and cowboy boots and hat at the Spring rally last year. What amazing people you are!!! Our thoughts and prayers are with you both. God bless.

Again, we thank you all. We started Hospice last Saturday after finding the best one in the area. We're impressed but overwhelmed this week as per Medicare laws, all (Doctor, Nurse, Social workers, Nurse Practicioner, CMA s)must all come by and meet with Jesse in the first week of enrollment so it's been a revolving door. When the Executive Director (trained and practiced Hospice at both Case Western and Yale) came in and knew his date of diagnosis and saw him she knew he was very rapidly progressing and wanted to send caretakers every day. He said no, that would ruin his retirement they're only allowed to come three days a week.

We learned last Monday at an ALS support group that Hospice is for anyone with a terminal illness, not the less than 6 months to live as we had believed. If one had a condition for which there was treatment or surgery, you can go out of hospice for that and then go back in. We told them we were not willing to give up his specialist visit in Phoenix in July and the Director said they would pick up that expense so we don't have to go out of hospice.

Everyone was impressed with the care he has received at home (Jesse calls me his Dragon Slayer - just ask the VA I'm on their list 😳) and we've made it clear to the social worker that "good enough just isn't" that I expect the same carefulness from their staff when here as I provide. Maybe that's my way of being in control of something. The nurses are here at the moment and one said to me in all my years of nursing she'd never seen a patient as well cared for or such a knowledgeable caretaker, they are amazed. Made me feel really good!

Finally we hired a nice young man thru another agency to come three nights a week and make Jesse comfortable overnight so I can sleep in the guest room starting the 25th. Both of these actions have already given me a huge relief, knowing I won't be facing months more of this primarily by myself.

Plus I've been diagnosed with celiac so learning a gluten free diet. I haven't been cooking much except breakfast the last few months as I don't have time or was too tired. I decided to try Plated.com after seeing them on SharkTank. We love it. You pick 3 choices of two meals each - each week. On Wednesday a very chilled package of antiobiotic free meats or chicken and they send everything you need including spices, little bottles of wine premeasured. Generally all I need is some kind of pan(s), olive oil and salt and pepper. The meals I choose take less than 30 minutes to prepare and we both enjoy the variety of gourmet, healthy meals we're having. The studies I read said its actually less expensive to do this than shop for ingredients for those meals. I mention this because there is no commitment, you can start/stop as you want and have shipment address change each week so it's perfect for RVers!
Know I read and re read your loving comments, thoughts and prayers.

Sherry

-- Edited by WestWardHo on Thursday 18th of June 2015 05:25:55 PM

Sherry & Jesse, we are with you in Spirit. Love you guys!