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Praying for patience
Posted: Monday, December 2, 2019 10:58 PM
Joined: 5/11/2017
Posts: 96

Want to tear my hair out and scream loudly! Just a night that seems beyond all hope. Yes this is so hard. Listen to repeated stories, asking questions that are simple to me but often require me to get up and fix, This is not my husband, it is a child in my husbands body. I am tired, angry at this disease and oh so so sad. I feel guilty for these feelings. I dont know why or how to go on, knowing the outcome is further decline. I can only pray for help and share my feelings with all of you, knowing you get it. I think I need a break, Thank you all for listening.
Posted: Tuesday, December 3, 2019 5:59 AM
Joined: 4/2/2018
Posts: 3057

I think you need a break too. Is it possible for you to get someone to stay with him for a while so you can get some respite?
Joe C.
Posted: Tuesday, December 3, 2019 9:08 AM
Joined: 10/13/2019
Posts: 303

ugomimi, I know it’s difficult but you have nothing to be guilty about. None of us signed up for this journey and we all all doing the best we can. If you can find a way to take a break, go for it. We can not continue to take care of our LOs if we don’t take care yourselves.
Posted: Tuesday, December 3, 2019 9:58 AM
Joined: 6/18/2019
Posts: 83

There have been many nights where I felt frustration, hopelessness and loss of all patience like I have never known in my life. Praying today will be a better one for you. People often say to me ‘He has good days and bad days, right?’ I always say it’s not all good or all bad. Each day has a little of both, but some days have way more bad than good. I agree with Joe. None of us signed on for this journey and we’re all just doing the best we can. This community has helped me more than I could ever have imagined. Someone once suggested finding a time and place where you could let loose and SCREAM! I’ve done that a few times while my husband was outside or in the shower. It didn’t fix anything but I did feel a bit better! Hoping you will get a break soon.
Posted: Tuesday, December 3, 2019 10:09 AM
Joined: 3/1/2015
Posts: 1

Ugomimi, you are not alone. It is difficult to see your spouse disappearing and transforming into someone you don't know. As Joe C. said, it's not a journey we signed up for. My husband was diagnosed six years ago at age 54. Every day is a challenge and taking a moment to breathe is essential to our well-being. We can allow ourselves to drown in guilt, or accept the fact that we are human and doing the best that we can under the circumstances. We all make mistakes and lose patience. I often do but try not to waste the little energy I have on the anger and frustration that this disease consumes. Try to maintain a sense of humor and give yourself credit.
Posted: Thursday, December 5, 2019 11:31 AM
Joined: 12/5/2019
Posts: 1

I need help!!!! My LO is only 49 and been diagnosed in 2014.  Has anyone had the experience of verbal abuse by their LO?  He is so verbally abusive and has started to accuse me of affairs that he truly believes.  I don't know what to do or where to turn.
Posted: Thursday, December 5, 2019 12:31 PM
Joined: 12/4/2011
Posts: 18710

Screaming? Done best in the car or the shower.

Tearing out hair? Never good.

Sad feelings? Oh, yes. Again, the car and shower come in handy.

Feeling guilty because you do not "love" the life you are living? Throw that guilt right out the window.

Getting a break? Great idea. This is a full time job. You must have some down time.

Posted: Friday, December 6, 2019 12:21 AM
Joined: 12/5/2019
Posts: 11

My LO has accused me of scretly going through his things when he is not in the bedroom, hiding his underwear (Gee, that sounds like fun), and even changing the pictures on the wall to confuse him.  One day recently he came storming out of his room and said "Where did you hide my clock?" (There is never a preface or introduction to what is whirring around in his head). I said "What clock?" He replied indignantly "The cuckoo clock on the wall! You put a tapestry up instead".  Ah, no. I didn't. 

So together we went to his room. I pointed at the wall "THERE is your clock, where it has been for 15 years. And THERE (above it) is the tapestry".  His response was a sullen "oh". And he walked away. 

Such fun! I tell myself "Here we go again" when he comes storming out with yet another delusional obsession, usually at my expense, e.g., "Are you stealing my pills?"  Sigh...

Seriously, I am a religious person so I do daily devotions in my bedroom each day. I pray for 3 major traits "LOVE, PATIENCE AND STRENGTH".  Do I always have them? Of course not, but praying for them constantly keeps them as my spiritual goals in my mind a lot of the time so I can step back when he is being "crazy" again. 

My fear is whether an Alzheimers patient could ever become violent. He used to tower 3 inches over me but now is 2 inches shorter than me. But would I call the police? These are the kinds of questions a care giver has over time.

Posted: Friday, December 6, 2019 12:27 AM
Joined: 12/5/2019
Posts: 11

I go to a care giver group once every 2 weeks. One guy there tells people "YOU ARE MEANT TO SURVIVE THIS!"  This is his way to emphasize with a catchy slogan that we must care for ourselves. Give up the fantasies of tropical vacations, just do little things every single day, even if it is to simply buy a packet of chocolate chip cookies from the supermarket bakery and hoard them just for yourself.  Or keep a juicy trashy book to read, or fix meals you love or buy a little treasure for yourself on Amazon. I think a care giver has to develop THEIR OWN LITTLE WORLD and become their own best friend. This is not a cliche. It is often hard for extroverts to understand, whereas introverts naturally do this. But as a caregiver, you have to create your own sacred private space in your home or in your head where your LO can't come. 

You are meant to survive this. 

Posted: Friday, December 6, 2019 12:38 AM
Joined: 9/5/2017
Posts: 621


You are so right, we caregivers must take care of ourselves.  I like the way you think!  

Posted: Friday, December 6, 2019 11:51 AM
Joined: 2/4/2017
Posts: 518

DylansDad...I think you have a valid point on how introverts naturally have developed their "own little world", where extroverts generally have a more difficult time caring for themselves I can see the differences among my support group members.


Posted: Friday, December 6, 2019 7:51 PM
Joined: 6/18/2019
Posts: 83

Thinking like DylansDad has saved me. It can be a really trying day and I’m thinking “Yes! It’s almost 5:00 and I can have a glass of wine!” I find myself looking forward to so many small things I used to take for granted. Just like now - DH is hopefully in bed for the night and I’m in the recliner with a puppy in my lap and my IPad. My own little world!
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