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Post Info TOPIC: Jesse Update


RV-Dreams Family Member

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Jesse Update


I was driving home from the Prescott VA Hospital last night and half listening to an NPR program interviewing a folk (I think) singer whose name I didn't catch. It was a very profound interview but one comment he made was "He lived his life fully in spite of the inevitable" struck me as that so well describes Jesse.

He's currently in the hospital for 5 days to get his pain meds and breathing leveled out and to give us both some respite as we were beyond exhausted. Getting up, up to 7 times a night. We've both lost a lot of weight and our BP's also needed to be lowered. I've now had 4 nights uninterupted sleep and it has been months since we've accomplished that. He was admitted Friday on an emergency basis for respite care which was supposed to be 5 days. As of yesterday it may be extended a few days until all under best control possible.

They started him on low dose morphine which has controlled the pain, gorked (evidently that is a medical term ūüė≥)him out and caused nausea & vomiting. His care is kind but not consistent so I sorta had a little discussion with the department director and his social worker yesterday. They are switching him to Fentanyl (?sp) patches and are insisting respiratory stay with him while he attempts to use his bipap as it has "been fighting him" instead of just coming to make adjustments and leaving. He had a feeding tube surgically placed in his stomach on 2/6 to supplement feed and surprised the doctor by asking if he could get an attachment for the keg or cask because then he could probably pass any breathalyzer test. In reality he maybe has one half a beer or wine in a week these days and traded in his driver's license months ago. Unfortunately they also tube fed him 14 ounces of supplemental liquid food shortly after his breakfast on Saturday along with the 2 oz of water before and after to flush the tube. That did not help his nausea. :(

They foiled his planned introduction upon admission which was "My Name, Jose Jimenez" as he wheelEd up to the nursing station for admission by anticipating him with, "Mr. Collins?" 

We've lots of visits from his family members which he has thoroughly enjoyed and I've had to let all house guests know they're welcome, both fridges are fully stocked but I can't be taking care of guests or cleaning up after them. He loves friends visiting as well.

Its its fortunate our Trilogy & truck haven't sold yet because if he has to be admitted to Prescott VA Hospital Hospice (1.5 hours each way) I'll move it up there and stay near him. We do plan to reduce the package price $10,000 but in my brief search I can't find the classified I posted on here so I'll get to that when I can. His wish and our goal is to keep him at home but so far I haven't been able to find a private duty nurse in our area with ALS experience for occasional overnight relief.

Until very recently he's still enjoyed going out to eat. He says if anyone in a restaurant is uncomfortable with me feeding him as he no longer he can't use his hands or arms, that's their  problem. He thoroughly relishes tasting all foods as he knows he won't be able to eat by mouth much longer. He's started choking on thin liquids so a tasteless thickener has been added and his speech is now is slurry as if he had too much alcohol but he's still funny and always making me and others laugh. We have a friend and neighbor who has had several brain surgeries and was relearning to drive and said his wife won't ride with him. Jesse piped up and said, "I'll go with you, I have nothing to lose!"

We have lots of friends feeding us and many anglels helping us along this journey. We are so glad we had our 15 months traveling, living our dream, and I actually love being in a home again at this time. I'm really relishing the dishwasher, washer and dryer and the cushy TP!

Sherry



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Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

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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!



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Sherry,

So glad to know he can still laugh and make you laugh through this entire ordeal. You and Jesse are in our thoughts and prayers, we're looking forward to seeing you at the end of the month, even if that means we need to change our plans and go to Prescott instead of Cottonwood.

Dale and Ruth

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

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

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FT - July 2013

 

2010 38TKSB3 DRV Mobile Suites

2012 Ford F450

 

Dale and Ruth Travelling with Tazzy Kat!

 

IMAG0142_zps070d30d8.jpg

 

 

 

 



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We would definite echo Debbie & Steve's and Dale and Ruth's comments on the update. Take care.  



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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

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Sherry,

It looks like Bill and Linda has "quoted" your original posting of the ad for your trailer and truck, so it is now at the top of the "Classified" section.  It will now be easier for you to find.

Our thoughts and prayers are out there for both of you.

Terry



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Sherry,

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

Hugs...Cori/Greg

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Sherry, Thanks for letting us all know how you are both doing.  We've thought of you both several times and wondered how it was going, so we will continue to keep you in our prayers.  Take care and get your rest too.  



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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.

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Sherry and Jesse we think of you often and are so glad we had the opportunity to visit you both last November. We couldn't believe Jesse's sense of humour considering his circumstances and we're so glad he has retained that. You both have been an inspiration to many. Our thoughts and best wishes to you both.

 



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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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I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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Sherry please know that my thoughts and prayers are with  you and Jesse. ♡



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WestWardHo wrote:

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


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



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Sending our love and hugs, and praying for God's angels to surround you both.

Red and Pam

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

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My thoughts and prayers go out to the both of you as well. Your strength and humor continue to be an inspiration. <<< HUGS >>>

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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


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I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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Sherry, we're continuing prayers for you and Jesse as well.  You're both such great people and we just hope the time you both have are the happiest moments possible.  God truly brings people together for different reasons, and Jesse landed an angel for sure!   Stay strong!



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

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Sherry- thanks for the update, so glad he is home and resting. Hope you can both get some sleep and recover a bit from this ordeal.

So looking forward to seeing you guys at the end of the month!! Tell Jesse he can pick the menu and I'll be happy to use your lovely kitchen to cook for all of us and give you a night off of meal prep.

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FT - July 2013

 

2010 38TKSB3 DRV Mobile Suites

2012 Ford F450

 

Dale and Ruth Travelling with Tazzy Kat!

 

IMAG0142_zps070d30d8.jpg

 

 

 

 



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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!)


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More prayers and thoughts from us.  Also, it is wonderful to hear you are getting support from others around you.

You two deserve all the love that seems to be emanating your way.

Blessing to all involved out there.

Terry



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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.


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Have been thinking of you a lot lately. It's been months since I've checked in, glad I did. I so admire you and Jesse's strength and love for each other.
Hugs, Ann

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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

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Sherry and Jesse, You are remembered nightly in prayers. Pat K

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RV-Dreams Family Member

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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



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I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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My thoughts and prayers are with you and Jesse. Reminds me to live life always as we see fit and not wait for "someday."

Hugs to you both

Carol

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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

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My thoughts and prayers are with you as well. It's very inspiring how both of you can be so positive through such an ordeal. I wish there was a way to make your lives much easier. <<< HUGS >>>>

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(well, not new any more! Full timing since 6/25/14)

2008 DRV MS 36TKBS3 (the CoW: Castle on Wheels), 2005 Ford F550 hauler (the Bull)

My blog is http://mitcheryl-rv-journey.blogspot.com/

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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.

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God bless you both. You are in our prayers.

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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.



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Debbie & Steve McCormack...and Hurley too!

Our Blog: Down the Road

2013 Montana 3582RL

2013 Dodge 3500HD Laramie Longhorn Dually

Fulltime since June 2014



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Sherry,

We used Hospice for both of Diana's parents. They were marvelous. Don't wait, if at all possible. I know this won't be the case with Jesse, but Diana's mom actually improved to a point that she graduated from Hospice. They are also a huge calming effect on the caregiving family, and will bring you peace.

Jim

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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.

__________________

FT - July 2013

 

2010 38TKSB3 DRV Mobile Suites

2012 Ford F450

 

Dale and Ruth Travelling with Tazzy Kat!

 

IMAG0142_zps070d30d8.jpg

 

 

 

 



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Caregiving is such a hard job and it is such a blessing when the person we are caring for has a good attitude, is positive, and still able to be humorous. For that you can be truly grateful. Ditto on the comment above about hospice. They are like angels here on earth and were so wonderful for both my mother and me during her final time. Hugs and prayers for peace for you both.

Jodee

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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.   



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GRACIE’S GOLDEN GETAWAY
Barry and Marianne traveling with Golden Retriever Maggie
2014 Ford F-450 DRW Super Heavy Duty Lariat
2015 Solitude 305RE for full-time in 2016
Current:  Carlisle, PA



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So good to see your post today. I had just contacted Ruth to see how the two of you were doing. You and Jesse are such an inspiration of love and strength. Life is not always fair, but the both of you grabbed it by the tail and given the rest of us a view to strive for. Hugs to you both.

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



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Brian, Cindi & Josie (our fur baby)



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We thought about you guys many times at the reunion rally. Keep up the positive attitude; you both are inspirations!

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Cori & Greg Young...and Hobie, too

(formerly "byseaandbyland")

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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

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Sherry - Bill and I also thought of you and Jesse during the reunion rally! So sorry to read how his health is declining so quickly. My cousins mother-in-law had ALS and I've seen how devastating a disease it is. I am so glad you have help and a positive attitude, it helps I'm sure.

Sending love, hugs and prayers your way!

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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.



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Thank you for the update, Sherry. Steve and I think of you both often and are so glad that we were able to spend time with you last November.
You both will continue to be in our thoughts...hugs to you both, xo
Dianne and Steve


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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 ūüė≥) 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

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I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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So happy to hear you are getting some more help, allowing you both to stress less and get the rest you need.

You guys are in our thoughts and prayers and we are so looking forward to seeing you in November, even if it only going to be for a couple of days this time. It was so good to hear both your voices last night and to hear Jesse's sense of humor is as good as everbiggrinbiggrin

Hugs to both of you!



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

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Sherry the Dragon Slayer. I like that.



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Fergizmo wrote:

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


 +1

 

Our feelings exactly!

 

Red and Pam



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