Lady Texan(2)

Pam BH

Lady Texan, thinking about you and wondering if you and your DH are okay. You've got a lot on your plate so sending hugs, prayers, and good thoughts your way.

Ed1937

What timing! I was just about to send her a PM. I think I will so she doesn't miss this.

LadyTexan

Thank you Pam for the prayers and good thoughts. Thank you Mayor Ed for the PM. 

Your support means more than you can imagine. We have had ups and downs here. 

An up: one of DH's buddies called the other day. They reminisced about shenanigans from their early 20s. They sounded like a couple of hens as they chatted about old times. That was heartwarming and gave DH a much needed boost.

A couple of downs: DH fell twice yesterday. Both times were during transfers. I just don't have the strength to lift him independently. To make matters worse, I blew my top because he wasn't following my directions or even acknowledging my prompts & cues. When will I learn that YELLING or a gruff voice NEVER EVER helps. 

Its almost as if, I forgot he had brain damage.......AND I had just attended a virtual conference on Saturday that repeated what I know but often disregard: he is not doing these things on purpose. He has Alzheimer's Disease. His brain is dying. He doesn't understand what I am instructing him to do. 

I am anxious and on edge. DH watches opinion TV disguised as news ALL DAY LONG. He has the volume on 20. I wear ear plugs to block the chatter and volume. It helps a little. Because DH is basically bedbound, he cannot shadow me. He does become uneasy when I am out of his sight. When I leave the room he is in, he constantly calls for me and rings the "hotel desk" bell indicating he needs something. 

LadyTexan

continued (I didn't want to lose my text):

Another up: I am asking for help. And I am being very specific about what I need. For example,

• help responding to the VA. 
• a cooked meal to lighten my load. 
• A lift assist from my sister and her SO when DH fell.

Sometimes people help. Sometimes they don't. Its better to ask and get help than to not ask and not get any help.

My thoughts and attitude make a huge difference in my ability to remain calm. Deep breathing is very helpful too. I am coming to terms with the fact that placement may be in our future.

Even though everything seems crappy and sad, I still have much to be grateful for:

• I am grateful DH knows who I am. 
• I am grateful the pharmacy delivers DH's meds. 
• I am grateful I could participate in the caregiver conference virtually. 
• I am grateful for hospice. 
• I am grateful for my faith, my family and my friends. 
• I am grateful for all of you caregiving heroes who hold me up.

Ed1937

Thank you for the update. I'm glad your attitude is keeping your head above water. Don't be a stranger.

LadyTexan

continued (I didn't want to lose my text):

During the conference I learned about the Pain Assessment in Advanced Dementia Scale also known as the PAINAD scale. I googled it and printed the scale. 

DH complains about pain daily and has been complaining about pain for months. Hospice put him on a 25mcg/h Fentanyl patch that lasts for 72 hours. So I replace the patch every 3 days. Even with the Fentanyl patch DH complains of pain. Hospice advised to give him morphine when he complains of pain. 

I am not as afraid of the morphine as I was in the beginning. 

Today I will try to gauge the pain using the PAINAD scale. I am trying to determine if the pain is real and how intense it is or if DH just wants to ask for something.

It is hard for me to engage as much as I used to on the forum. DH keeps me busy most of the day. Additionally, My technology hardware is failing me in several different ways. ARGH!

Please know that I am thinking of you all and your loved ones. I am praying for you too.

God bless you and your loved ones.

Pam BH

Thanks for the update. Wow, your plate isn't just full - it's overflowing. I'm amazed how you balance that with a plate full of gratefulness that is also overflowing. Many prayers your way, Lady T.

Joydean

Lady Texan it was so very nice to hear from you. You really do have your hands full. Please know you are always in our thoughts and prayers. Both of you guys. Please stay well and take care of yourself! 

abc123

Thank you for the update. You are both thought of daily. I'm sorry things are what they are.

Doityourselfer

You are very strong, Lady Texan.