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It's been a really long time since I've posted anything on my own, but I feel that I need to share my own experience in hopes that it will help other caregivers going through a similar nightmare.

Mom has been in Hospice for over a year now, and has lived with us for over 21 years. We had Mom on Xanax for quite some time and had to occasionally increase it because of her behavior. Mom is, and always has been, a difficult person. Because of her end-stage COPD, her condition has continued to decline. She has hypoxia, congestive heart failure, dementia, and extremely needy. But, up until about 3 weeks ago, we've managed. By the way, I work full-time and my husband who also disabled, and my daughters try to help me out.

Anyway, after fighting with her constantly over the extreme volume on her TV and other arguments, we increased the Xanax and flipped out the volume control buttons on her remote.

A few days later, she fell 3 times. The hospice checked her over for concusion because I found her sitting on the floor between her chair and bed like a rag doll. We thought it was the Xanax. The very next day she almost fell off the toilet. I took her to ER because the EMT told me that he transported we'd lose hospice. Not true.

The next day I talked to the doctor and he told me Mom had had a mini stroke. He assured me it was not caused by the Xanax. She was really dealing the staff fits. Hospice transferred her symptom management to respite so I could work and we could get some rest. The doctor put Mom on Haldol while she was in the hospital and prescribed it for her for when she came home.

Once she got home, she agreed to use the commode and I felt relieved, but her state of mind was getting worse. Plus, she was becoming even more aggitated. Not only that, she became constipated. She couldn't understand what had happened to her and I couldn't get through to her.

The doctor increased the Haldol. Well, I took care of the constipation, but then she started acting and talking goofy. It was getting to the point where she started hallucinating and was having horrible trembling that wouldn't stop. She wouldn't eat, wouldn't take liquids.

A special geriatrics nurse came over with the social worker and said she was experiencing severe side-effects of the Haldol and that her experience has shown her that Haldol is a very bad med to give to an elderly person. Especially one who is as sensitive to meds as Mom is.

I was with Mom for almost 2 days straight. I barely left her. My daughter watched her for a few hours at night so I could catch a little sleep, but I was up and with her by 2 so my daughter could sleep.

Mom was in the past and it was an awful place. I felt as if I was the medium between her 2 worlds. There were several moments when I thought she was going to hit me, and several moments when I thought she was going right then and there.

Yesterday, I thought she was finally getting all the Haldol out of her because she had a quiet day. She didn't take her breathing treatments and didn't eat, but we don't push her. I finally got a decent night's sleep.

But, it started all over again this morning with the hallucinations. The nurse told my husband it takes a week for all the meds to get out of her system. I don't know how much longer she can take the nightmares. Maybe she'll never get over the side-effects. But, she won't let go.

While she was in the hospital, they were giving her Plavax, Iron, Potassium fizzes, Haldol, and God knows what else. I've made the decision not to. The whole philosophy of hospice is comfort. And, it's hard. But everything they gave her only hurt her more.

Now, I'm afraid she'll never leave her nightmare world. She could even become violent. Then what? We can't put her in a home because we don't have the money and she doesn't qualify for assistance. I'm afraid that when she does die, it's going to be with her in the awful past. I pray everyday that she is allowed to die peacefully and quietly. And soon.

I have at least learned several important things. I can challenge and refuse meds. I can tell the hospital, if she ever has to go back in, not to give her supplements or other certain meds. I have also learned to more deeply research medications. I was constantly told that her doses were so low, that there "shouldn't" be problems. Well, guess what.

I just hope that whoever reads this can learn from my experience.

Dee
Dee
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(((Glenda & Barb)))

Thank you so much for caring. I really do pray that all caregivers and their loved ones will benefit from our awful experience with medications. I can now admit that we were trying to manage her and not her care. We were relying on drugs to make her "easier" to take care. The meds did nothing to comfort her. It's a hard, hard, pill to swallow, but I've finally got it down.

She's off of all drugs now except her Duonebs, and she can barely take a full treatment. Her lungs just aren't up to it. I'm determined to keep her off of all drugs now unless she needs a little morphine under her tongue if she's having any pain. It's ALL about comfort at this point.

She was talking to "people" all day yesterday and most of last night. My DH had the monitor with him and he said he swore he heard a man's voice but couldn't make out what was said. The nurse told him paranormal experiences were not unusual at Mom's stage. I've read that it's happened where paranormal voices have even been received through electronic devices. Okay, it sounds weird, but I have no explaination for it since the TV was off. My daughter had come over and sat with Mom and said that Mom kept looking past her as if she was seeing someone. My daughter said she didn't feel threatened or cold ... warm in fact.

Mom was muttering and talking to "someone" throughout last night. She's been talking to alot of people ... past and present. I don't think the meds are doing it now. I think she's entering the final stages.

I had to clean her up this morning and change her bed. She refuses to wears Depends. She had a little chicken noodle soup but it didn't stay in her long. But, she appeared glad that I had cleaned her, changed her bed, and cleaned up her room.

I know I have it so much easier than most caregivers who post here. It's just so hard to see Mom like this. She's trying so hard to be herself, but can't. Maybe she's ready to let go but maybe I'm not ready to let go of her. After all the huffing and puffing and arguments and challenges; after all the battles of will, maybe it's me and not her that's hanging on. Damn it hurts.

Dee
Dee.. sending loving hugs your way... I just let out a huge sigh reading your last post... it does sound as if she is in end stages... talking with others who have already gone on from the other side.. some who your mom may not have healed with...and some who are helping to prepare her to cross over with more ease... I pray that it is easier from here....

blessings

gail
(((Gail)))

Thank you so much for your kindness. For one who has never liked rollercoasters, this ride is especially un-nerving.

Mom seems to have rebounded somewhat and is eating again and has not had any hallucinations all week. In fact, I don't think she even remembers any of it. I really hesitate to bring it up to her for fear of a relapse or frightening her. What do you suggest?

Her BP was very low earlier in the week, but is okay now. The nurse's major concern is the swelling now in her ankles and feet. It's as if she's forgotten how to put her feet up. She's also trying to avoid her breathing treatments and I have caught her dumping the meds and pretending that she has taken it. It's almost impossible to force her to do anything that's really good for her.

I am giving her .25mg Xanax now after lunch. It helps her relax and rest more. She seems to require alot more sleep than before she had the stroke and her Haldol nightmare.

She still displays confusion and often talks alot more about the past. Of course now, they're all wonderful stories.

Anyway, thanks for listening and being here for me. My love to all.

Dee
Hello Dee... I am no doctor or professional with a degree.. my sense is that it might not be necessary to tell your mom.. but you have to listen to your heart in this instance.

Individuals in hospice will have good days and bad days.. some times that rally to such a point, we think that they no longer in need of hospice.. and unfortunately they tend to go down more.. but there are individuals who were placed into hospice and miracles occurred.. their disease remitted. So, you never know You such keep praying for her highest good.

You might try reading some of Stephen Levine's books or others listed in the suggested reading on death and dying so you will have a better understanding of the process... of the closing down stages, of communications with others from the other side.. etc.

Please keep us posted... take care

gail
Gail,

You are so right about the good days and bad days. Sometimes I wonder if she even needs to be in hospice, but then, something happens and I realize she does. I need them as well.

She seems to be doing much better as far as her vitals go and her confusion. The nurse is very pleased at how lucid she is now. Other things aren't so great, though. The ankle edema is still worrisome. If it doesn't improve by Monday, the nurse will see about putting her on very mild water pills to be taken as needed. Since Mom is so sensitive to meds, we hesitate to give her anything that would require even more meds to counteract adverse side-effects. There's that Catch-22 again.

She had a scare yesterday, and it was rather disturbing to me as well, although the nurse didn't seem overly concerned. Mom had had some mucus buildup ... probably from not taking her treatments. There was blood in it and the nurse told her that it was probably caused from irritation to her throat and/or windpipe. The nurse told me to check it each time. I must tell you, it really looked like alot and appeared clotted.

The whole incident gave me another reality check on how deminished her lungs are. She needs to get rid of the junk, but she's so weakened that it really wears her out.

I don't think I can talk to her about death and dying. What she said and experienced was during the time when she was recovering from the stroke and the Haldol. And frankly, I can't deal with her ability to bring me to tears and control my emotions as she's always been able to do. She is still a very manipulative woman even in her declining condition. She's always known what buttons to push and believe me, she is enjoying the additional attention that I now must give her. I suppose I sound like I'm flip-flopping emotionally. I guess I'm just tired.

Thanks for listening.

Dee
{{{{Dee}}}} it goes with the territory of being a caregiver... it is an emotional roller coaster any way you slice it when you care for someone, especially like your mom where you permit her to still push your buttons..

My parents could never handle my crying but I told them what I was feeling... and let the tears flow... after all being empathic and compassionate .. tears weren't abnormal.. and my parents didn't and couldn't talk about death and dying. I was the one that had to do it... they were both into denial when my dad was in end stages... when it was mom's turn about a month prior to her passing, she told me the doctors brought her back with cortisone.. that she was gone.. she said both doctors were into denial because they didn't want to lose her.. they had all grown so close together... on my birthday, when I was at a beautiful fundraiser, she called me on my cell. I was in the bathroom on the toilet... What timing. She was in the hospital which I knew and the aid was with her.

For the first time in my whole life, my mother came from truth. She told me her body was closing down and that my father had been speaking with her from the other side. She told me that she needed me to support her, to let go of me and that I would be ok... and that she needed to support me to let go knowing I would be ok... it sounds absurd.. but our whole relationship changed to a more loving one than I could have ever dreamed of as a result of the phone call...

you just do the very best that you can so you don't have guilt... there's no right or wrong way.. we are making this up as we go along... you must be grateful that you have a hospice nurse who is guiding you and encouraging you to call with your questions... this is a gifted blessing.

keep us posted... take care

gail

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