Lady Texan, how are you?

abc123

Just checking in. You have been on my mind a lot. Hope things are going as well as possible.

Pam BH

LT, thinking about you too. Hope you and your DH are doing okay.

Ed1937

As have I. We haven't heard from you for a few days. Hope things are OK.

LadyTexan

Good morning my forum friends. Thank you for checking on me. I haven't been able to login to the forum as frequently as before. Although hospice folks come by 5 days a week, I feel more isolated than ever.

Things are going reasonably well. DH has declined quite a bit since hospice came on board. I am adapting to what this horrid disease has dumped in our laps. Here's what's new:

• I created an "apartment" in our master bedroom, so DH has no need to use the steps. I put the hospital bed directly next to our queen bed so that I still feel close to DH. Our dog Hap thinks it is a fun play scape and jumps from bed to bed with joy. Hap hides his toys under the pillows. Hap shows off for all the female visitors. He is such a ham. It is entertaining.
• DH is generally bedbound. I transfer him from the bed to the toilet to the recliner to the transport chair to bed over and over and over. 
• I am learning to drive the transport chair without maiming DH. 
• I do laundry ALL. DAY. EVERY. DAY. 
• When DH has a messy code brown, I am grateful for his BM, because a constipated dementia patient is miserable.
• DH's adult son came to visit when he learned DH was on hospice. He questioned and critqued some of my caregiving methods. I was able to hold my tongue and I actually learned how to transfer DH more safely.
• When I inform people DH is on hospice, they want to visit. This will be nice for DH, but I feel pressure to keep the house "vistor" ready.
• One day DH woke up in severe pain and I gave him morphine orally for the 1st time. That was scary for me but it sure gave DH relief.
• I have been dragging my feet completing the Out of Hospital DNR. I don't know why it is so hard. It is an important document. I am committed to doing it today.
• I am trying to get additional services from Texas Health and Human Services. It has been like pulling teeth. I suspect the services will likely show up after DH has expired. 
• The Veteran's Service Office expedited DH's application for services now that he is on hospice. I am not optimistic because DH's discharge from the Army was not honorable.
• I did learn that application with HHS and the VSO may be expedited one someone is on hospice.

I think of you all all the time and I miss engaging with you. You are definitely in my thoughts  and in my prayers.

M1

So glad to hear from you LT.  Hap sounds like a ray of sunshine.  And glad you have the morphine at the ready, don't be afraid of it.  By the way, a stool softener like Colace may help prevent narcotic-related constipation, as would MiraLax if you can get him to drink it.

Our dog Riley has two games to play, "Jump" and "stick."  Jump involves running leaps off the front porch and tearing circles around the yard.  Stick involves tearing circles around the front yard with said stick in his mouth.

Stay in touch when you can, we are thinking of you.....and I agree, get the DNR paperwork done.  It will not cause or hasten his death but can prevent suffering when that time comes.  I know you intellectually know that.

Doityourselfer

Lady Texan,  I just want to say that I've been thinking about how you and your husband are doing.  You're both in my prayers.

Ed1937

Lady, I'm so sorry. Even with all you've been through, I'm sure you feel this is the worst. You have done everything you could to help him. Please continue to do that by signing the DNR. Your heart has no place in this decision. Trust your brain.

Again I'm sorry, and I wish we could make it easier for you.

Quilting brings calm

LT-  sign the form.  We all know why it is hard- it’s a visible tangible admission of what is to come.  It’s not like the forms that you sign ‘just in case’ where you don’t think it will get used.  Just remember you are signing this FOR him, not doing it to him.

Stop worrying about the house,  people who want to visit him can either understand the house or they can lump it.  You’ve got more important things to do than clean house for them. My thoughts are that the people who really want to visit( and say goodbye) won’t even notice the house or will totally understand. If any of them offer to stay while you run an errand/ go- even if it’s just to go to the closest restaurant for take out coffee, 

Mint

(((LadyTexan)))

May you be blessed to find a little peace in the storm.                   

Take care           

Ed1937

Quilting brings calm wrote:

Stop worrying about the house

That is ABSOLUTELY great advice. Make your life as easy as it can be. Don't worry about others.

abc123

Thank you Lady for making the time to update us. I kind of understand the DNR situation. When I booked mom's transport, hospice explained that I needed to have a copy with me, they also explained if she would have died during the trip, I would have to have her pronounced dead at the nearest ER. That was extremely upsetting. With everything there was to consider when planning the trip, I never once thought about that possibility. Just one more thing to be thrown at us, as always. 

I hope and pray he is doing as well as possible, and you too. I also hope he is able to enjoy Hap's company, I feel certain Hap is a comfort. Animals are amazing. 

toolbeltexpert

LadyTexan wrote:

Good morning my forum friends. Thank you for checking on me. I haven't been able 

Lady Texan thank you for the update I am still new to the forum, but your posts are so well written, hap sounds like a handful. You have so much on your plate, housekeeping may need to take a back seat for a while. Something I read the other day.  This was a rule someone wrote to himself in his dying  days. " I will let others love on me." If they want to come and visit maybe they want to love on you. If they offer to do the dishes let them love on you. You deserve it. Prayers for you an DH

Joydean

Lady T, it’s nice to hear from you, please know you are in our thoughts and prayers. I agree with others, let the house keeping be, between all the laundry and all the other things you have to do your plate is full. If people are coming just to look at your house they don’t need to be there. True friends are there for you and your husband. Take care of yourself too. God bless you and your dear husband.

Battlebuddy

   Lady Texan , 

 I get it . There is something about Hospice coming on board that makes your life busy. they are visitors in your home and one wants to show these professionals that you are doing a good job with the environment  your husband lives in. Ones day gets organized around Hospice visits and it fills up the day somehow. My visits are only 3 days a week and I’m busy. I can’t imagine 5. 

   As far as outside visitors coming to say goodbye, my husband had 11 visitors the first week on Hospice. But as time went on and he didn’t pass away things settled down to where they were before, which was not many visitors. I think people inially feel bad they hadn’t come by before and want to be able to say they came by at the end. 

   Hospice is wonderful but it does have its own specific challenges. One of my bathers comes at 8 in the morning. I’m supposed to just roll out of bed in my nighty and let her in but I can’t do it. I have to be up and showered and dressed before she gets here but that’s me. 

  I too am very interested in your story and progress. Just drop us a line when you can. Now you and I are in the same phase and different hospices work differently so I find it informative how it’s going.  

jfkoc

I too had great hesitation signing a DNR until it was explained;

There is also chance of trauma to the body from chest compressions. It is very normal to hear ribs cracking and cartilage breaking during chest compressions if they are being done right. It takes lots of force to compress the heart with the sternum and ribs sitting over the top of it. Elderly people especially usually receive damage from this. The electrical shock can also be traumatic in and of itself.