Questioning my ability to put myself in his reality...

She1934, can you put an earbud in one ear and listen to music or watch an YouTube video or rent a movie to watch on a tablet while the baseball game is playing on the TV? This strategy has got me through three years of streaming Lawrence Welk variety shows and the same Daniel O’Donnell video every Sunday. The one ear technique leaves you the opportunity to reply to you LO’s comments.

She, how can you go on, sweetie? Sounds as if you've hit the wall, and no end in sight? Do you need to make a change? Maybe a big one?

Wow, that sounded awful. I am really sorry. I just cannot seem to function well this week.

She1934,
Listening, reading. Today I visited you here, just wanted you to know.
Support and love to you in your struggle.

As a few weeks have gone by, and my physical and mental exhaustion grows worse, I find myself in a place I never wanted to be. One night he gets up every half hour or so-"I need coffee", " you're starving me", " take me home", etc. I swear I am trying, but I cannot get any good rest. Then another night he stays asleep and gets up at 9 am, but I keep checking on him-afraid that he may have stopped breathing. He fights going back to bed, puts his clothes on and his teeth in, yet just an hour or so before he can't even stand and I have to wheel him to bed in a transport chair. I have found wonderful quotes on patience, I take advantage of any quiet moments in the morning to meditate. I Stretch and exercise and gird myself for the day-drink water, put the first load of wash in. Once he's awake - most likely by 6, then the entire day is spent tending to his whims, his needs, his obsessions, and packing for our move. Tonight we are watching baseball, which for me is like watching paint dry. I sit here answering literally question after question about a game I have grown to hate, and about anything that randomly pops into his mixed up mind. I want to scream and never stop. Eventually I may get him tucked into bed only to begin again. I am here 24/7 with an occasional 2 hours to myself if his daughter decides to come by, but even then I just try to breathe. He has let our dog out three times and I have to go get the little bugger. I know we are in this together, but these days and nights are literally killing some of us. As for me, I would rather it be sooner than later.

Teri4077: You are so welcome! I learned long ago that caregiving is not a contest and even if it were, I don't aspire to be on top. My words come from the heart and are factual. My mother and I were polar opposites as she was a sugar coater even when it came down to speaking with medical professionals. And thank you for your kind words of inspiration, Teri4077!

as I've been reading and posting on this site it's been fascinating to see how we are all drawn to certain people's posts and not so much to others. I'm finding myself seeking out posts from people who I know will share my perspective and provide helpful, rather than negative, feedback. Thanks for doing so, Llamalover!

mally: Yes, so true!

Teri4077: You're very welcome! Caregiving isn't easy, but when you've got God on your side, you can do it.

"But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint." Isaiah 40:31

Thanks, Llamalover -- as I move into this new phase of my life (retiring early and moving to Mom's state, moving her in with me) I especially appreciate that guidance to keep my focus on the Lord.

Ain't it the truth!

Teri4077: Oh, thank you for your sweet comments! I rallied because I had GOD on my side, else most assuredly without HIM, I would have failed!

Llamalover47, that must have been sooo difficult for you. Thank you for sharing your story with us.

Lost: I understand that as well. I went through some of that with my late mother. She lived out of state (not the same state as mine) by herself, was 94, legally blind, had A-fib, Congestive Heart Failure, Arthritis, Incontinent one way (soon found out it was both) and blood pressure of 60 over 40. She demanded that she stay in her own home leaving me no choice but to leave my home and move in with her. We tried reverse mortgage, home health aides, and a lot more, but all of it fell through. She passed away from a stroke. I know what you're going through, BUT it will end.

Llama, yes, we have talked about that. But money talks, too. Right now, we're paying my daughter (who is currently unemployed, but has a medical background ) to provide 24 7 care. All agree she (mil) should be in a facility, but we can't afford it without selling her house and property first, and with MY HUSBAND and his SIBLINGS I don't think that will ever happen.

Lost: Since you are disabled yourself, do you think you should find a new living solution for your LO?

Because of my own health issues I have a hard time controlling my voice volume, and I am sure, along with her bad hearing, this is part of her taking things the wrong way. But I also worry about myself falling, and then what? Scary!

If you could pick a time good for you & people you know of are caregivers, start it & listen & share. Do it same day weekly if possible. You will be amazed how it lifts your spirit. You don't need a degree to be a facilitor just good listener. It's free therapy for all.

Support group in my area is once a month at 7pm in the evening. It is not good for me or my husband. I agree with your suggestion. I would love support group.

One of the best things you can do for yourself (and for your care-receiver) is to find a Caregiver Support Group through an area church or medical entity and join it.

My husband doesn't appreciate anything I do but he gets very upset when I take an hour away. I don't leave him alone. Usually a family member just happens to be coming over so I can leave. He knows that I have arranged for someone to come over and he get angry saying he doesn't need a babysitter. But I really need some time off. A stranger in the house will make him very upset. I read all your blogs and it seems there is not solution but to buck up and take care.

GaINPA, I'm still laughing; we both are! How does she DO that?

Oh my G-d , its so hard to keep my cool sometimes. I found myself telling my Mom " thats not logical" yesterday .. shakes head. It dawned on me i was being an ass ( not for the first time) . But 24/7 is not an 8 or 12 hour shift and going home. 24/7 w/o help or sleep is whole Other level of hell that Dante never wrote about. Soo cut yourself some slack and get help ..Take a break . .understand you human

oh, midkid58, my heart breaks for you and so many on this site. I am grateful to all of you for all the care and love you provide in such difficult situations. :( God knows what you are doing.

Hi, Sorry to hear that but honestly we all feel that way from time to time, right gang,? Its nice to have this support group were we can vent and know that were not alone. You do need some 'me time' whether u get it when there napping or sitting calming. Right @ this very moment im having me time, its 637 am CST, my mom is still sleeping, so I usually sit around with a cup of coffee, read the word, and be silent. I wish I can go for a walk its really beautiful out, but I can't so I'll just sit, drink, read and be merry LOL - I too at times feel angry, frustrated, lonely, bored, hate, depress N sad to see my mom like that (ALZ) I can't even have a decent conversation with her, my mom is here with me physically only not mentally, but I believe deep down her soul/heart she knows something is wrong with her, but I'm here for her and we can all be glad that were able to give them the care,love that they gave us, though my mom was something else raising us, but I learned to forgive, she had a really rough childhood so she didn't know any better. I know that's no excuse. Don't feel GUILTY about your negative feelings towards your husband there normal. What's not normal is when we let these feeling rob us from taking care of us and those we LOVE. I'm sure your doing the BEST you can, just having him home is already a big PLUS, we decided to keep our LOVE ones home and take care of them. So if possible take a few minutes for yourself so that you can continue on. Lets try to have a GREAT weekend!

I know how you feel SHE. My husband has liver cirrhosis NASH and gets encephalopathy due to ammonia build up. He can't speak words when he's like this and gets very ornery and mean. He can't comprehend anything, can't dress himself, refuses his medication. Sometimes wants to walk around naked and even went outside in his underwear. He has had to be hospitalized 4 times in the past 6 months. I try and try to be loving and kind...but it just doesn't work. I get so angry...at myself...for not being a good caregiver. But as you said: he was once a funny, loving, capable, and caring husband and now he's not...and never will be again. It's sad and frustrating. But we can't give up. I guess we need to just count the blessings and moments we have had, and ask for strength for each new day.

I know you may not afford it but....you may live longer than the one you love & Care for...leave them home & you go to the large celebration. They do "showtime" & it wears them out so they become themselves when home, frustrated & crabby. I find even grocery shopping short while is fine after a scenic ride. I try to do this during sundowners time when questions are repeated. I feel my alz hubby isn't as trying as many of you even tho it's been 11 yrs. Very slow changes. Support groups where you spill it all out to others in the same boat is free therapy. Go every wk if you can. Call Alzheimer's hot line 24/7. They are trained & will listen. We caregivers are a special group & we need help but also can give help to other caregivers. I feel that is a gift I had no idea I had. You don't need a degree but patience & laughter gives you a calming life. Read "Alzheimer's Reading Room". Many subject ideas by a man who learned how to get his mom turned around & happy. It's free.

I know that I erred when my response to my late mother was "you already told me that: when she would state the same thing 1,001 X over. My response should have been "oh, that's nice."

She1934: “But I know that his soul is still there and because of that I must keep telling myself how it must be crying out to be heard and I cry with him and for him.”
That is the most insightful, poignant thing I have ever read on any of these pages. Yes, I believe that the real husband you know and love is aware and suffering along with you on how things have come to be. My hope (and belief) is that souls can see levels above us concerning what life is really all about, and the depth and understanding of your love.
I WISH THAT ALL THOSE CARING FOR THEIR LOVED ONES HAD YOUR UNDERSTANDING AND LOVE.

ohmigosh! GAinPA and robinr -- thanks for sharing your stories! My world, too!!! Mom worries about my rosacea, but it only flares because she keeps the apartment so warm....