Harsh Reality

Scooterr

   My wife was officially diagnosed with AD on Feb. 2019, but unofficially as I look back it started at the end of 2017. As caregivers we face the brunt of our LO's downward spiral which at times lead to are own.

  It's funny even myself now I'm slowly forgetting the good times my wife and I have shared. There now being overridden by the  sorrow of this horrible disease. It doesn't matter if your taking care of a LO at home, or if their in a MC we see it and feel it. I believe we feel it more than our LO simply because we understand the depths of destruction of this disease and where it's going. Even if we have people weaving their way in and out of our lives to help. Some may stay with us, some may disconnect, or burnout and move on. The harsh reality is everyday we have to digest this disease of dementia and secrete it out and try to make sense of it,

  My wife and I have been married for 40 plus yrs. It's always  been full of love, every morning  I love you, going to bed I love you, well I love you more even through the hard times (you get the picture). This morning was another first while outside she became upset. I was trying to get her in the house so I could get her dressed for church. Like getting hit by lightning, it rolled out her month "I hate you." I couldn't say anything, I just stood there trying to process what I just heard. I just looked at her and could see so much anger that I've never seen before. I've never heard these words come from her mouth before. My wife loves everyone and everything, that's just the way she's wired. I know she has forgotten about it, I know it's the disease talking and I may hear it again. The problem is I won't forget.

  The harsh reality for caregivers is having to swallow the pain of words and actions of our LO. Where do we put this pain? Do we put it away and let it eat us from the inside out?, or does it totally consume us where we don't feel anything? Even if we have someone to share our problems with the satisfaction is short lived and it's on to the next problem,  Sometimes it's just to much. 

Rescue mom

You’re right, we caregivers are expected to handle the worst. Yes, it’s the disease, and yes, her brain is broken. It’s still painful. Where does that pain go? If you don’t deal with it, how best you can, it can have physical effects on you.

Talking to others in the same situation helped me—a support group, where everybody has dealt with this. Therapists can also help, and if you’re on Medicare, visits are covered (not every day indefinitely, but a lot, IME.

Just Bill

I feel your pain. What helps me is I look at her emotional state as weather. Some days are cold, dark, cloudy, rainy, full of thunder and lightning. Other days are bright clear and sunshiny. Like all weather patterns it is always changing. I've gone from a "I hate you and I hope you die." to "I thank god for you every day." within a 10 minute period and everything in between. I'ts as unpredictable as the weather but like the weather I am prepared for cold,  rain, snow, hail, thunder, lightning. When its a bright and sunshiny day I am grateful for that moment. I just block out all the nasty weather and only remember the good weather. Don't take the bad weather personally. It isn't her it's the disease.

Joydean

Scooterr, I’m so very sorry! I think many of us have heard our love ones say things they would never say in a hundred years. Yes it hurts, yea we know it is the disease, and yes our hearts have a hard time knowing the difference. But we forgive so the pain doesn’t destroy us. Easy, no, but if we are sincere in the forgiveness, then yes we can! We don’t give this disease the satisfaction .

Just Bill

I handle my pain by being obnoxiously positive. I take all the pain and through meditation and breathing exercises turn it in to positive energy. Turn it into unconditional love for your partner so your job is easier.

toolbeltexpert

Scooterr I feel for you,even though it's the disease speaking , and 5 minutes later she good,your still feeling it.  I just asked dw if she wanted to go to a baptism about 4pm today, someone from church, she said no you can go if you want. I saw her change, why? From that verbal cue i was warned it could be a bad afternoon? I was so depressed this morning from yesterday and folks at church could tell, I thought I was gonna lose it, for some reason my tears kept trying to come out,  they had to wake me from my funk to start the children's music.  Our preacher is doing a sermon series on the fruit of the spirit. Today is peace. "Peace is love at rest." John 14:27. Jesus said my peace I give you, NOT AS THE WORLD GIVES PEACE. I needed that ,cause this ole world will wear you out, and nothing it has can give me peace. I have to remember to take rest. I love my wife and I will take rest in that. Sometimes I wish she wouldn't remember me though, maybe she would be nice? It's been 5 days on the depakote and I am not sure it's gonna help. Scooter you and your wife are in my prayers every morning. I am sorry this disease has taken another turn for your dw and you. When "you've love all you can,take rest in that fact."

Paris20

It is very hard to hear those harsh, cruel words directed at us, even when we know it’s the disease talking. I’m getting better at tuning it out than I used to but, with medication, my husband has fewer blow-ups than he used to. He is now in a skilled nursing/assisted living facility because he had a stroke two months ago. This, on top of AD diagnosed in 2015. When he first was admitted he was very belligerent, threatening to kill anyone who touched him. His meds were increased slightly and he has adjusted to his new surroundings, which are quite nice. He even flirts with the caregivers, who tell me he’s a doll. I am very grateful. 

All I can add is that you are human and you are hurt. It is absolutely normal. I learned on these boards that at some point most of us have had to speak to our LO’s physician about medications that will help our spouse be more in control and allow us to continue our relationship in some form. In my DH’s case, were it not for the stroke, he would have remained home. Nevertheless, without those important medications, he would not have been able to remain home as long as he did. 

ImMaggieMae

Scooterr, that would be very hard to hear, especially because it was such an abrupt change. My DH is around a stage 6 in that he can’t dress or undress himself, shower, is incontinent much of the time, has to be fed at least half of the time, doesn’t remember my name often, but if I or someone else asks him who I am he will usually say I’m the person he loves. He often tells me he loves me. If he told me he hated me, I would feel absolutely devastated, disease or not. I can imagine exactly how you feel. This is all so horrible. But we have to figure a way to carry on. 

Have you talked to your DW’s doctor re medications? My DH takes Risperadone and memantine. The risperadone has made a huge difference in his mood and ability to sleep through the night. 

Old89

I cannot imagine.   As I started reading your post, I thought, I could have written it.  My wife's diagnosis was even within a few weeks of your's.   We have been married 48 years.  But the worst pain I have experienced so far is that she identifies me as her brother.   I have always made a big event out of our anniversaries.   Last week, the night before our 48th, in the context of a conversation, she said she had never been married in her life so she does not know what that is like.  I decided in the spirit of not trying to reality check someone with dementia to just sit silently and cancel my plan  for dinner on our anniversary as it would be too confusing for her and too hurtful for me.  That morning I checked in on my phone and searched for phots from our anniversary, as they started to come up, I was overwhelmed with grief and spontaneously cried most of the day.  

It it is true it is the disease but for me, knowing that does not make the losses painless.  

Scooterr

Thank you guys for your comments, words of encouragement, and verses. When I read some of your responses I know we're all hurting some more than others. When I log onto this forum I want to be optimistic, I want to be positive and hopefully give someone a little encouragement if not just for a minute. I feel when I'm optimistic toward others it just makes my life better, but as my wife declines I find it difficult to be optimistic, but there's always hope tomorrow will be better. I hope you caregivers have a great day today.

Rennbird

I was raised Catholic and learned a lot about suffering along the way.  It took time, but the only way the experience of my husband’s Alzheimer’s made sense to me was when I accepted that it was a long Good Friday.  I saw Christ in the eyes of my husband and his fellow sufferers.  The caregiver stands at the foot of the cross and on the cross with their loved one.  I realize that this isn’t everyone’s belief system.  I share it because it brought me the peace I needed.  Again, it was the only way I could cope.