Would I be a terrible person if . . . ?

[Ruby Vee, BSN]

if i said that i wished death would come for my mother sooner rather than later?

she has alzheimer's, and she's sinking deeper and deeper. before, the changes have been gradual, over months and years rather than days and weeks. but in the past 8 weeks or so, she's sinking deeper and deeper into depression and her confusion is increasing. she had a uti, they've treated that, and there doesn't seem to be another source of infection. her meds are tuned up -- as tuned as they can get them. but the good days and good moments are become fewer and farther between.

in the past, i could enjoy my phone conversations with my mom. she couldn't remember things, sometimes for even 30 seconds, but she'd laugh at herself. she was going out to lunch with my aunts, going to church with her friends and was invited out to dinner, high school basketball games or grade school recitals two or three times a week. she often couldn't remember where she'd been or with whom, but she was sure she'd had a good time. not so much anymore.

tonight when i called, mom was upset because neither her mother nor my father had been in touch with her. (her mother has been dead for 40 years or so, and dad died last year.) she couldn't keep a single thought straight from the beginning to the end of her sentences and as she sobbed, she asked me "why can't i just die?" would i be a terrible person if i asked that myself? she doesn't seem to enjoy life anymore, and nothing seems to give her pleasure for more than a few minutes. she knows she's losing her memories and her personality and she's scared to death. she doesn't want to go through it. i don't want her to have to.

any of you working in memory units, assisted living or long term care -- is there enjoyment in life at this stage? is there something to look forward to in the future? or is this just the start of the inevitable downhill slide that will end only with her death?

[kiszi, RN]

::hugs:: You're not a terrible person. I'm so sorry you're going through this.

[Tina, RN]

I'm so sorry that you are going through this, too. I can't even imagine how hard it must be. :hug:

[caliotter3]

Whatever you do, do not neglect your mom for even five minutes at this time. I was out of touch with my mom for ages, and then one day I got the news. I can't tell you how many times I've cried since, and I am not one to cry. When she is gone you will feel a sorrow that surpasses the sorrow you feel now. When she is upset because she can not remember, hold her hand (if you are there) and try to comfort her. It is the best you can do. I am so sorry you are going through this time in your life.

[vhern246]

Your not a terrible person and its awful that you have to go through this. At this stage, just make sure she's as comfortable as she can be and make sure your doing everything you can do.

Taking care of an extremely ill family member is very difficult, but just remember this piece of advice that got me through it. (more of a mantra, really)

"I'm doing all I can and making the effort, so I can hold my head up high at the funeral knowing that I tried."

Morbid, but reassuring. Good luck, and God bless.

[Redhead28]

My father passed away in 2001 from complications from a stroke. My siblings and I chose not to put in a feeding tube. Dad was in advanced Alzheimers. I know what you are talking about, it is a terrible disease. It robs people of not only their memories but their dignity. Worse you know it is happening in the first stages. I have had a "gene" test but do not have the traits of Alzheimers. I've already talked to all of my children and told them to do nothing to lengthen my time if I can not be independant. I'm sorry for the issues that you and your mother are having to deal with at this time. I don't think you are terrible for not wanting to have your mother suffer.

[CNL2B]

Ruby, you are not terrible. You are humane. I am so sorry for what you are going through.

I am not speaking of you and the situation with your mother in particular, but some of the things that we put people through in the name of modern medicine I wouldn't want done to my dogs.

I have been trying to talk to my MIL for a long time about her mom, who is in a LTC and has had complication after complication and isn't going to get better. Apparently her advance directive says she wants everything done, although she is DNR/DNI. I was told, "We're going to do everything we can do until there is nothing left to do, and then we will stop." This makes no sense to me. Where is the quality in her life?

I am sure as a fellow RN I don't have to talk to you about the availablility of care or services on the palliative/hospice spectrum, or the importance of healthcare directives. I am guessing you have ran through all your options in your head. Unfortunately none of that is going to stop your heart from breaking.

:hug:

[mamamerlee, LPN]

Make sure you have all your ducks in a row. POA, both healthcare and financial; guardianship, advanced directives. ALL OF IT.

You are not a terrible person. My husband can hardly bear to visit his mom - she no longer recognizes him at all. She still looks toward someone who calls out her name, will answer 'fine' if you ask how she is, and can sing to certain songs she hears.

Can still use a fork, but prefers her fingers, can still drink from a cup or straw.

She is still completely ambulatory, but not always continent.

She is not conversant, and will change her clothes 5xday or more if she can get to the closet.

We know this is not the life she would have wanted for herself. It is truly heartbreaking.

My husband says she is not 'in' there anymore, aliens are wearing her skin. Like in the movie Men In Black. She has been in a nursing home over 5 years, and she is only 68 just this month.

You are not terrrible; you have a unconscionable burden. And only those of us who are in the same position truly comprehend your state of mind.

Find a support group, an Alzheimer's group, a shoulder for crying. Come back here. You can contact me thru here as well.

[donsterRN, ASN, BSN]

Oh, Ruby, you are NOT a terrible person. You're human.

I'm so sorry you're going through this. I know how hard it is. It's a vicious disease because it affects so many people.

Sending love and hugs.

Don

[dudette10, MSN, RN]

any of you working in memory units, assisted living or long term care -- is there enjoyment in life at this stage? is there something to look forward to in the future? or is this just the start of the inevitable downhill slide that will end only with her death?

they can get enjoyment out of things. simple things. mundane things. but it's still enjoyment. however, the sad parts (the worrying about "mom and dad," absolutely needing to be somewhere and caregivers not "allowing" it, etc.) can be very difficult for them, especially during sundowning.

conversation (dialogue), however, is nearly impossible. you just have to listen to her monologue. maybe try to talk to her at times that her caregivers indicate she is mostly happy. she won't know who you are most of the time, but direct the conversation a little if you can tell she's going down a path that will lead her to distress.

i'm just a nursing student (, but i live this every single day. i use distraction all the time. i don't know if this will work for your mom (different things work with different people), but if you catch her on the phone during a distressed time, ask her something to get her mind working in a different direction. i ask my mil how old she is. she works so hard to figure it out that she forgets what she was upset about. what's key is that her not knowing how old she is doesn't upset her. but, then again, my mil is very far along (with a physical body that's in damn near perfect shape), so your mom may not appreciate the same types of distraction techniques.

also, she's not my mother, and i know my husband has a harder time with it than i do. however, after years of her living here, we've both become less emotional about it. (as harsh as that sounds.)

good luck to you.

[Katie5]

I hurt for you.I know you don't want our pity, but I still hurt for you.Prayers & hugs at this time.

[SlightlyMental_RN]

No, you're not a terrible person. I've wished and prayed a hundred or more times that God would take my mother, rather than have her suffer like this. She, too, has moderately severe Alzheimer's and gets so distressed over her inability to do things (such as ADLs), find the words to express herself, and has had severe personality changes and behavioral problems. My own mother is (unfortunately) physically healthy--always has been. It's just this shell of her that walks around, and what's strange to me, is that she doesn't even look like my mother hardly (she doesn't carry her face or body even in the same way.) I hate this disease more than I can say.