Hi, My husband also has PPA and Posterial Cortical Atrophy. It is very challenging to communicate to say the least! He gets frustrated not being able to get the words out and I just try to guess what he means. I encourage him to keep trying but he is saying less and less. I continue to pray for patience for him and for me. Look for the small blessings in each day and let go of the frustrations.. Not easy but we have to keep our sanity somehow!

Hi Remi. Thanks for sharing. I could have written that post word for word. It is so disheartening not being able to understand what he's trying to say and of course he gets angry about it. A long with changes of Alzheimer's he is so miserable. What posterialcorticalAtrophy? And did his PPA come about with stroke? My husb didn't have a stroke. Praying for patience and trust in God's plan for us.....looking forward to chatting again. Diana

This is a wonderful group, non-judgmental, practical and helpful. We learn from one another each day.

Hello to all, My husband July 1st woke up and could not walk 10 steps before he sat down sweating very pale and a yellow tint to his skin, plus he could not breath.. I immediately rushed him to the nearest ER I could think of.
They immediately hooked him up to oxygen, IV fluids and called an ambulance to move him to the best hospital in our area.

He stayed in ICU 11 days..his heart was completly surrounded by fluid in which a drain was placed into the heart sack an came out of his chest into a colostomy bag....the fluid was pretty much all blood red.
It took about 3 days to drain his heart sack they said had I not brought him in when i did his heart would have stopped beating from the pressure of the fluid.
After the surgery a Cardio Dr came in and said point blank see that fluid.... its cancer. see this monitor look at the mass on his lung its cancer. Needless to say we where both in Shock as my husband is a non stop gardner, cook and enjoying his retirement at age 72. Stays busy always.

After 10 days in ICU , 4 days in a floor down in a private room he was going to come home and he was so happy as he had never been in the hospital before.

I brought him home and his Oncoligist appt was 12 days later...seemed to far away for me. I was uncomfortable and scared to bring him home.
1 and a half days later same scenario as the July 1st. back to ER at hospital...his lungs where almost filled with fluid..they immediately put him an antibiotic IV and drained one lung...yay he can breath we where happy. 2 days later they drained the second lung 2 liters of fluid....the first lung had a bit more.
He stayed another night till they could MRI his brain to ensure the cancer had not spread..he started the test made the tech stop after 25 min and she took him back to his room. The next day he said I'm ready to go home I said wonderful ....until the nurse informed me he had not completed the MRI...and had to have it done...I said may I take him to a place in the am close to home, sure we got him released and his now home. The next morning at 8 I got him as weak as he was and out of breath to have the MRI.
This Monday is the long awaited Oncologist appt. He will be given his options.

All that said I noticed after his 10lb weight loss in 6 days and constant coughing up so much mucus, blood I literally threw up...not a very good nurse but I did what any caregiver would do and cleaned up for my husband..
He seemed very confused when I got him up from a 4 hr. nap and he was saying things about people visiting him and just scared me really bad I just assured him no one was here and if they where they have left...he said good I dont want company. Again the next morning more hallucinations and almost as if he developed dementia
overnight..I feel so alone and lost. I just want to get him to the Drs on Monday and start treatment yesterday, I'm just a mess.

Please tell me it gets a little better I need to hear positive news from others as you who have been in my situation...I just want to rest and not worry about his severe sleep apnea new diagnosis by the way and make sure to check his oxygen every few hours and BP..all has been good.
I pray he will be himself again one day but until then I will take the best of care as I Love him even after 46 yrs of marriage...any advise would help.
Thank you for listening I hope to hear from someone who has been in my shoes .

With Warmest Regatds,
Yvonne a loving wife❤😭

I'm getting at least a dozen of these emails a day, and need to unsubscribe as they're overloading my inbox. I really appreciate the support and caring fellow caregivers, but need to unsubscribe for now. Bless you. Pat

Hi.. Thanks for letting me join.. Not sure what to say... My husband has brain injury and I think its getting tuff around here... He's up and moving around when he's not sleeping... He's angry to me a lot.. Any advise. ?

My name is Deb and I'm currently a caregiver to my husband, who was diagnosed with Glioblastoma early in 2019. I also was a caregiver to my mother, who passed away from cancer at the age of 44, back in 1987.
This is certainly a very stressful time of my life and I hope to hear from the rest of all you amazing caregivers.
Deb

My 75 year old husband had a kidney transplant 3 years ago at Mayo. We've been married 49 years so far. He has diabetes, and just now diagnosed with pulmonary fibrosis. I don't think he knows how serious it is, and I don't want to tell him right now.
He is not sick yet, only coughing. But I am feeling overwhelmed and do not know what I need to do for him. He does not want to go anywhere due to the covid problem. I just now emailed seven of our children for support, and no response as yet of course. We live far from everyone, but used to fly to see them all frequently as we fly free. Now, that is not going to be any help for him. He is tired of being in the house and afraid of covid. Is there an article somewhere that helps a caregiver to know what all to do?
(first picture most of the kids, second picture is of my dh with two of our sons)