In a Time Warp

trm

Sometimes I feel like I am in an alternative universe.  I work full-time at home and care for my spouse full-time at home.  Home is like a world that doesn't exist anywhere else.  I don't understand 90% of what she says.  She is angry with me no matter what I do to make her comfortable.  She was once the most compassionate human being I have ever known.  Now, no matter what I do, she is angry.  I am the only one she is mad at.  Then, I go into another room and work.  At work, the insane land of Alzheimer's does not exist.  The days blend into years.  Meals, meds, care, food, and steering her to safe behaviors go on day after day.  Monday, we will attempt Caregiver number three.  She hates them all.  The battle over having help from a Caregiver will continue.  It feels like a carnival ride that doesn't stop.  At times, I think this will kill me before her.  How does a soul mate turn into an angry person that hates you?  How long does this continue?  Why does she hate me?  I know, in my head, all of this is the disease.  It is like being stuck on a hamster wheel; the days turn into years.  The answer I know is that there is no answer, and this disease will claim her life.  Sorry for the bummer posting.   I just needed to talk to others that understood.

BethL

Might  medication help? I suggest a visit with a geriatric psychiatrist. They have much experience prescribing meds that (hopefully) improve behavior for dementia patients. Prayers for you, I know it is tough.

M5M

Trm, such a hard schedule! Working from home while caregiving means no true respite for you, I sure.  

One comment caught my attention, though, …the new caregiver. Have you tried introducing the new person as someone who is going to help you with work? Or bringing work to you from the office? Or a computer tech, etc? Maybe that would at least allow the person in the door so you can assess how it might work.

Best wishes!

Paris20

Trm, you’re going through hell at home. I agree with the recommendation to speak to a doctor about medication. After my husband started Seroquel plus an antidepressant, he stopped the outrageous belligerence. Before that he lashed out. He hated his aide, in my opinion a wonderful woman who tried her best to help him. One night, however, as we all went upstairs at bedtime, she could see DH was teetering on the steps and tried to support him with her arm. Flicking it away, they both flew down the steps. Thank goodness they were not hurt but I was at my wits’ end. I’m grateful DH’s neurologist prescribed those meds. There comes a time when you have to use whatever works.

Ed1937

"How does a soul mate turn into an angry person that hates you? "  I know exactly where you're coming from. Been there, done that. Here's my take on it. Is she an angry person? Yes, I think she probably is. Does she hate you? No, I don't think so. Even if she tells you she hates you, it's the disease talking. Can we imagine what they are going through with this disease? How do they feel when suddenly they can't find the bathroom in a house they've lived in for years? How do they feel when they are transitioning into someone who does not recognize loved ones? How do they feel when they begin having trouble with speech? How do they feel with so many other things? No wonder they're angry. They have a right to be. They have a terrible disease. Those of us who are the caregivers are the ones they are closest with. They have always felt comfortable expressing their discomforts to us, and unfortunately the words that come out of their mouths do not really reflect their feelings toward us. What they hate is the disease. Just my two cents, but if you think of it this way, it will likely make it easier for you, even though it does nothing for them.

M1

I totally get it, that's what my life was like before my partner went to MC (although if you read my other posts, know that that has also been fraught with other difficulties).  There is no good answer.  But if she won't accept help at home, you may have to think about placement.

MaryG123

I try to look at it this way.  She probably hates the life she’s trapped in, and has regressed in terms of maturity, so has little or no control of her emotions.  You are there, so you get the brunt of her anger.  I’m so sorry you have to deal with that.

ghphotog

Im sorry this disease is so difficult for us caregivers. Today I feel overwhelmed and depressed. The future will drag on forever it seems. Family doesn't want to help or even be reminded of it seems. I also taking care of my mom. She can't help me much at all so I'm in it by myself. We do it because nobody is going to do it for us. Their lives are in our hands. They will never know or remember what we have gone through to care for them so it's truly a thankless endeavor but we step up. Hang in there.

Iris L.

She probably no longer recognizes you or her home, so she feels lost and vulnerable, and cannot figure how she got where she is or how to get back home (to her former life) which, of course, will be impossible.  Enter her world, and make things easy and simplified for her.  Don't ask her questions--it's too hard for her to answer.  Think of some activities on her level. 

Iris

ARgirl

I too feel like I live in an alternate universe.  My husband had become verbally abusive and threatening to me and my adult daughter who lives with us.  He has familial early onset Alzheimer's and has been ill going into our 11th year.  We are attempting to keep him home as long as possible, but the last year has seen significant cognitive, behavioral decline along with aphasia (which increased his level of frustration and agitation).

He was beginning to have hallucinations (auditory), increased sundowning, and struggling significantly as noted.  I talked at length with our physician, and we started Seroquel recently.  I read everything on the drug (it will scare you) but I am pleased to report the belligerent, abusive behaviors have mellowed significantly, and nearly disappeared.  I know this dose may not sustain this improvement, simply because this disease is a nightmare with deterioration of the brain. But I was willing to give another medication a try to give us another tool in our toolbox for management at home. 

Only time will tell how long this medication can prop him up (and in turn help us give the care he needs).  This alternate universe is not a pleasant place to reside...

trm

Thanks.  I always try to remember not to ask questions. Easier said than done, right?

Just Bill

In my humble opinion if you are going to be a working full time caregiver at home you have to aggressively embrace the medications available for the symptoms the patient is experiencing. Find medications that eliminate the symptoms. Every symptom has an anti. Antidepressant, anti psychotic, antianxiety, antiwhateverisdifficulttomanage, etc. Play whack a mole with symptoms using drugs that counter act those symptoms. You have to have a good doctor that listens to you as a caregiver so they can prescribe based on your description of symptoms. Then test, evaluate, adjust, until your patient is stable, that is the only way you can sustain being a caregiver. I cannot give my wife anything that will restore who she was but there are hundreds of medications that eliminate negative symptoms. Anger, depression and psychosis are all manageable with medication you just have to have the right medical cocktail. My wife was depressed angry and psychotic, impossible to be around. Now she takes an antidepressant, and 3 antipsychotics and she is very pleasant to be around. I take her everywhere with me and she is very pleasant company.  I take her to work and golf and she can carry a basic conversation with the people there. She isn't in a medical induced fog either. We can still have conversations, and she has a sense of humor and plenty of energy. She has no short term memory and is cognitively impaired but the rest of her personality still works. I am fully aware there is no cure for the disease but there are a lot of drugs to ease the pain of the process. Living with a dementia patient is like living in the Twilight Zone but it doesn't have to be a scary episode if you have the right combination of meds.

trm

Thanks for sharing.  What an unkind horrible disease we all go through.  Glad you found a little relief, even if it is short-lived.  I take what I can get, these days, for relief.

trm

Thank you Bill!