Bad day

Lgw

We all have them. Today I had to bite my tongue when 1 more person told me the it would happen in God's time. We just couldn't see the big picture. I know I believe that but in the trenches I can't handle it. The other phrase that has gotten to me is "Have a nice day" I say politely thanks you too when I really want to say is I can't. I am living with a man that I no longer recognize and I can't have a nice day when he is dying. Okay, Thanks for letting me get that out with others that can understand the horror we live in.

Lgw

Right now I can't even risk leaving the house because my DH has tried to get up twice and he has been bedbound for 2 months.

JC5

Everyone’s bad day is different. Some days we can handle things better than other days. Truthfully I’m beginning to feel all days are bad days some worse than others. If I have to find DH phone and or ipad one more time I will lose it! It’s usually stuck in his recliner or left in the car. Thank goodness for “Find My...”

M1

LGW I'm sorry about the platitudes people are throwing your way. I guess they don't know what else to say and feel compelled to say something. I wish there were a way you could get even a couple of hours away.

Lgw

I'm just feeling down. I may have to ask for respite care if things don't let up.

Ed1937

Just don't wait too long. You don't want to wind up in the hospital.

Denise1847

Dear Lgw, Please take care of yourself. We are all living a nightmare that repeats itself every day. You are just reflecting what all of us feel so let it out and please get some respite. Don't let this disease take you down.

LilySue

If theres one thing we learn as caregivers it's to be careful with our words to others. The one phrase that has bothered me the most is "Everything happens for a reason." Seriously? What reason could there possibly be for someone's brain to deteriorate? I would never say that to anyone.

Nowhere

I’ve been in tears all week. Watching my husband walk eagerly, even expectantly, into the memory care bus to go on a scenic drive. I know he thinks he’s going towards freedom, but it comes back to the same place every time. I listen to him trying to find the words to say it took a wrong turn. Wasn’t what he wanted. M-F he rides that bus, and it breaks my heart because he isn’t ever coming back. And it’s so tragically sad. He gets out of the shower, hair dripping wet, and says, I haven’t showered. Walks out of his room, that he doesn’t have. Is hungry after lunch he’s not eaten, only he has. It’s too much loss every single breath.

Arrowhead

People mean well, but their words are not always helpful. Even though I am deeply religious, "it will happen in God's time" doesn't help. I believe that most of the time He doesn't interfere, but just lets nature take its course. Saying, "have a nice day" probably makes them feel better. "Everything happens for a reason" implies that the reason is always a good one, but often it's not. I get tired of people always praising me for what a good job I'm doing when in reality I don't have any other choice. We all need words of encouragement, but others don't always know the right things to say.

JudyMorrowMaloney

As a devout Christian I believe that God has a purpose for everything we go through even though we may not know what it is at the time. I also believe that God has an appointed time for everybody. But even as a Christian, I still feel like this isn't fair! None of this is fair to us or to our loved ones. This is a horrible disease and I can't understand why God allows people to suffer with it so long. It doesn't negate my faith in God, However. I realize it's not always appropriate to say that things will happen in his timing or that everything happens for a reason. Caregivers are suffering badly. Not only does this disease destroy our loved ones, it also destroys us. We will never be the same again after this experience. When we are going through it all we want is for it to end. I love my DH but I would rather see him go to see God rather than suffer on this earth. And, I want my life back!

KathyF1

Ditto, Judy. I believe God is in control too, but I don’t understand. I hope I see the purpose on this earth. And I hope I pass this “test”. The stress brings out the worst in me! I pray daily for patience, courage. And to find joy in life anyway.

LJCHR

I have a sister that always tells me "I look at the glass half-full". The other thing I hate hearing is "God knows you are strong enough to deal with this". It's like telling me when my first husband died "I know how you feel". 😡 You want to say, no you don't!!!

I have found that dementia is a difficult subject for most people, if it were cancer, etc , they understand more. There is such a stigma with dementia and makes people uncomfortable.

This forum is one of the best ways to get some relief because everyone here is living the same life.

So sorry for all of us - I hate this disease!!!!!!!

JJ401

God’s plan — My three year old nephew died and as we were walking into the service I told my husband that if the minister said God’s plan, I’d rise from my seat and deck him.

One thing that helped me through was the book “When Bad Things Happen to Good People” by Harold Kushner. Kushner, a rabbi, confronted the ‘why God’ when his son was diagnosed with a fatal degenerative disease. His analysis of the why, enabled me to get through my nephew’s death and my first husband’s illness and subsequent death. I am hoping I can draw on that again as DH slides through dementia stages.

Denise1847

I am finding that coping with my DH's disease a process of grieving, deep thinking, and discovery of just how great God is. This is a fallen world with all kinds of evil in it. Remember that this world is not our final destination. God did promise to restore this world to what He intended it to be for Adam and Eve, and that world will be free from disease, pain, hate etc. This has helped me to move through my anger and resentment. I have also come to recognize how truly self-absorbed I can be and why. The "why" is because I am very much attached to the things of this world (wanting a normal life) and I can easily observe others' lives and become sad about mine. All this does is bring me down. So I am essentially causing my own sadness. So what is working for me now is gratitude for all of the wonderful memories, comfortable surroundings, family and friends. I also read alot and see others so much worse (think of the poor people in Ukraine, the homeless etc.) and it gives me a different perspective. I also live with chronic nerve pain in my back so when I go to my pain specialist, I see people struggling just to walk and in worse pain, it is like a slap in my self-absorbed face. I pray alot and have essentially told God that I cannot handle my DH's disease and my chronic pain and that I am giving my situation for Him to handle and to guide me. I can tell you that I do feel he is with me, sometimes weeping with me but always present. I hope in some small way my experience can help others. God is good all of the time and He is in control. He will comfort you if you reach out.

Quilting brings calm

I can’t handle the ‘ everything happens for a reason’ or ‘ it’s God’s will’. If someone getting killed is God’s will - why do we put the murderer or drunk driver in jail?

I don’t believe someone getting dementia is according to God’s plan. It is just the reality of our frail bodies and minds, My son dying two weeks ago at age 31 was due to a seizure. Very likely that he forgot to take his medications a couple times or more that week Not some master plan. There’s no way I believe his death was meant by God to happen just how it happened on purpose.

danapuppy

LGW,

In scripture we might see, "In God's time" as the Lord's Day or the Day of the Lord. The days when God's wrath and judgement come upon His creation. Until that time man will endure trials and tribulation in this fallen world. Do not condemn those who mean well, pray for them.

My beautiful wife has early onset Alzheimer's, and her faith was much greater than mine. I cursed God for her suffering. Truly, I was cursing Him for my suffering. I was (am) angry toward Him and to others who made empty feeling gestures and attempts at spiritually inspired assurances that it was God's plan, blah, blah, blah.

My anger drove me on a quest to prove God either didn't exist or was some cruel old sob sitting on a throne somewhere and we were his amusement. I studied teachings from the likes of Nietzsche and Richard Dawkins. And I read the bible. To help understand its teachings, I watched and listened to prominent (and some not so prominent) teachers of the message of Jesus.

For myself the revelation was, God is. I try to keep it simple. God created all things; He is holy and righteous. He created man in His image to walk with Him in his creation. God wanted man to walk with Him of man's own choosing. Man has an innate quest for knowledge (which is not the same as wisdom). God provided man with an opportunity to choose. God advised man if he chose knowledge that God and man would be separated, "surely die." Evil was present in God's realm, too. As a result of man's choice, he was cast from the spirit realm (paradise or the garden of Eden) and cursed to toil in the physical and evil was cast there, too.

God seems to have always wanted man to be reunited with Him because he loved us. The bible tells us, He provided opportunity after opportunity and time after time we failed. God then sent his own loving son, free of sin, to endure God's wrath for man's rebellion. Now if we truly, within our hears, believe that Jesus is the son of God, he bore our sins, was humiliated and died on the cross, and was resurrected that we will live in eternity in His Glory. That is the promise of the gospel. Jesus' other message beside believe in Him is spread the Word.

Until we leave this world...we have to make the best. God, as omnipotent, does not cause pain and suffering. That comes about from forces seeking to thwart God's desire to once again walk with man. The part difficult to swallow is why doesn't He fix it? I get my comfort from the message Jesus uttered from the cross, Psalms 22.

I pray you find your comfort and peace in God. I know that no matter how severe the suffering here on earth...the glory of eternity with God in heaven is worth it. When someone says to me, it's God's plan or in God's time, I thank them, boldly tell them God has revealed his plan to me in the Bible, and offer to pray with them. They either hold hands and pray or run for the hills. LOL!

Lgw

I acknowledge everything you say danapuppy but it is wonderful to have a God who allows us to have time to grieve. Grief is a very long process in this disease and sometimes I get to stomp my food and feel sorry for myself. This site is such a wonderful place to scream and yell and no one gets hurt and they know sometimes the yell is just relief. I've not caused others to falter and doubt God. God is a mighty God and he knows sometimes the crying and screaming is not doubting His omnipotence but a simple relief. I know God has everything in His hands and in His time but the everyday "Have a nice day" can get to me when I am having anything but. I know my DH will be in Heaven someday soon and then he will feel the relief from this horrible disease. Again, I am not doubting God or his timing I just am human.