I'm new to posting on the forum but I have been helped immensely by the questions/comments I've been reading. This is a long post...
In early July I almost lost my 90-yr old Mom to pneumonia. Prior to her becoming ill we had talked many, many times about death and she hoped she would just die in her sleep. She was ready to go. Her POLST declined IV antibiotics but, when admitted to the emergency room, they asked if she wanted them and I believe once she said "yes" they had to move forward with treatment. She spent 4 miserable days in the hospital and wondered why she hadn't just passed away. She begged to get out of there.
After treating her for everything under the sun she was released. It was clear she could no longer live on her own so she moved into my home on hospice based on the discovery (while in the hospital) of atrial fibrillation combined with bronchiectasis (a long term disease we were aware of). She declined further treatment. The doctors estimated she'd probably live another 6-8 months.
Mom and I are extremely close and she was a fantastic Mom. We had a rough start to hospice as she constantly wished she could die, was depressed and never left her room. The daily grind of hearing her want to die, asking me to help and watching her joyless existence really brought me down, exacerbating my own depression.
Mom lived 5 houses away from me for the past 20 years and I pretty much visited daily. Mom was a fairly negative person and an extreme introvert. She did not really have friends or like people coming into her home. As she often said "I only need you" and, being a devoted Asian daughter, I never went away for more than a week for the past 5 years or so because I felt her happiness was tied to seeing me daily.
I finally convinced her to take antidepressants and it has helped a lot. What I am struggling with two-fold: one, wishing I'd have let her pass away in July and, two, feeling like I'll never be able to do the kinds of things I wanted to do because Mom is still alive.
I feel like a shitty daughter.
I know I can make choices but those choices would negatively impact my Mom. She would hate being in a facility because she's not social, doesn't like food she hasn't chosen and would never participate in any activities. It would be a death sentence.
Currently she sits in bed (literally) and watches one channel all day long. She can't remember how to use the remote, doesn't get out of bed except to use the bathroom and is now forgetting that she has eaten. Today she ate at 9:30 am, 10:00 am and 11:00 am, never remembering that she had eaten already. She eats more than I do!
I know this is part of the process but I am so irritable, not to my Mom, but to every little hiccup that happens in my daily life. I get so annoyed at the dumbest things and wonder why I just can't get my shit together and accept my new reality. The truth is I don't want to live like this for another year or two or three. Mom is thriving here but this person is not my Mom...
She is so grateful to be here and I know in my heart it's the right thing but I am just dying inside...
Any thoughts?
As another regular poster likes to say, "you don't have to light yourself on fire to keep someone warm." This is what you're doing.
Your mother needs to go to a care facility, she WILL adjust. Find a good place for her to live, then you can oversee her care there to make sure she's treated well.
Forget about the culture norm. That used to work before when most old people just died quickly after getting sick. They weren't living for decades sick, disabled, demented, and being a burden on family.
Nailed it.
Time for you to take some personal inventory. Who you are. What you would enjoy in life. What will the next five years look like to you? Are a few topics that come to mind. In other words, take the longer view of life and who you are.
Nothing is perfect. No one is perfect. From what you've described, it does not seem like you are "a shitty daughter"-I'd analyze that thought and wonder whose tone of voice that resembles that you know. This is a very stressful time-and unless you're a professionally trained medical type of person, it's gonna get to you. Here's a piece of advice I got during my first round of caregiving-think carefully about the choice(s) you will be making for the person you are caring for, think of them, think of you, chose the one that is best for both of you, the one that you will be most comfortable with going forward. Then keep going. There is a lot of gray area with this stuff, it ain't easy, your obvious angst is proof of your wanting to do the best job possible as a caregiver, and I betcha you are. Stap back, look at what you have done and some of the positives, that will help you going forward making the next round of decisions. OK-then think about a DNR, it's gonna happen, 'cause, it just is (that was my second caregiving) and find a support group or vent here. Have plans in place, look for more information, get respite care, you deserve it.
Mom has had a DNR for years and I guess when she almost died back in July she’d let herself go. She told me almost daily she was ready but when the rubber hit the road she wanted to stay alive. Human beings are an interesting species…
I’m relieved to have found this group.
Firstly, the things you describe your mother diagnosed with are not truly terminal diseases; your Mom's doctor's estimate of her life remaining, in all truth, is the 6 month guess that will qualify her for the help of hospice that you need. I must tell you, as a nurse, with the good care of your home, your mother may have another decade of life.
You describe your Mom as never really a joiner, and of never having a lot of satisfaction in whatever state of life she was at. And you have described yourself as culturally in the place you are partially because you are a "devoted Asian daughter.
As Ariadnee said, WHIPLASH.
You are exceptionally literate and you have painted us a perfect portrait of "not everything has an answer". That is to say, not everything has an answer that will make Mom happy (she was not happy before and she certainly won't be with the end of life process. As a life long nurse now approaching 80 I can assure you of that) or YOU happy (not with caring for Mom for another decade, and not with the grief of placing your Mom in care).
So now we are down to the facts in the issue. No need for me to reprint them; your description of them is perfect. There is no answer to this that will make everyone, perhaps not ANYONE happy to any great degree, but you know yourself, and you see what is coming. And it IS coming. You fear guilt (try to think of guilt as grief, because words matter, and grief is what it is). And you fear losing yourself as things are (which is exactly what will happen).
I suggest that the only way that you can comb through the best answer for yourself is now professional help. As I said, there is no perfect answer and they don't have magic wands either, but a Licensed professional Social Worker trained in life transitions work (they are best) or a GOOD psychologist can help you comb through this to come to what is the best answer to this.
YOU deserve a life. Your Mom has HAD her life. You are likely at a time and age where you are at your prime, and you have worked for this in every aspect of your life. You have already GIVEN much to your Mom, even to understanding her, and who she is,and why she is who she is.
I truly wish you the best. For me there is little question of what you need and what you should do, but to do it without being more certain could injure you further than you are now injured. And only YOU have the best answer to what will be the best for you in a very imperfect set of choices.
I certainly wish you the very best. Get help with this. My heart goes out to you. This is something I have seen all my life. I live in San Francisco and we have a large Asian-American community. I see how fraught all of the already gruesome choices we all have to make become when there is a middle generation pulled by the ties of the traditional past with "becoming American". It is one more complication in an already fraught path.
No one wants to lose a loved one particularly a parent or sibling. And I think for most losing mom is the most difficult.
Mom is the one that brought you into this world, is/was the nurturer, the one that "held the family together" is most households.
To see a parent in decline you begin the have to accept that there is a finality to the life that you have had forever.
What you can do is
Thank mom for what she has given you. All the things she has taught you over the years.
The times she held your hand and cried with you in good times and bad.
The times she pushed you to be your best.
And she stood by when you told her that you hated her when she told you that you were grounded.
You are not going to completely lose her.
She will always be with you. When you look into a mirror you will see her. Often you will hear her words coming out of your mouth, might even sound like her at times. She will always be in the back of your head telling you to "stand up straight, pick up your feet when you walk" (that was my Mom and I still hear her saying that and she died 50+ years ago!)
Do the best that you can for her now.
Hold her hand, tell her you love her.
Tell her that you will be alright.
Oh, and it is perfectly normal to get pissed off at stupid stuff. Try to set aside time for yourself. Get away if you can.
Pnemonia will cause Dementia type symptoms. Even after it clears up there can be symptoms, I think. Pnemonia is serious in the elderly. With her lung problem it could reoccur.
Let Mom do what she wants. Don't try to entertain her. Get yourself some help with Moms money paying for it.
I would think having this desease for a number of years and the damage it causes would weaken the lungs and then make them more prone to pneumonia. Mom has already had pneumonia once. Each time she has that and a problem with desease the lungs are damaged more. Don't see someone living 10 years with this.
Oh, your Mom's DNR soooo reminds me of some of the little old world Italian women I knew-"I wanna die now and go see Jesus" was pretty common or "I'm done, no more, done", meanwhile, there they were cooking, cleaning, and whatnot. Yeah, hearing those words the first few times was insane, but after awhile, I'd just say "Bettina, you're fine, and how's your grandson?" She'd laugh.
You have a close relationship with your Mom. You really need some respite time-because, why have this incredible stress clouding up the nice memories you did have with her before all this happened? It's ok to get some healthy space.
Very rarely can I carry on a decent conversation with her. I mourned the passing of my dad, step mom, & step dad, all whom I loved, and now the one who is left, is the one who isn't capable of having a relationship with anyone.
If nothing else, at least you can vent here and know we feel your pain. I too feel like a shitty daughter and no amount of wishing differently has helped. I too, get annoyed over dumb things. If/when she goes to the hospital, there will be no heroic measures taken. If 20 years ago, she could have known how she would end up, she would have been horrified. This is NOT the person she would ever have wanted to be. Picking her nose in front of people, messing her pants, getting mad over taking a shower. This is not the mother I had, she is gone, and nothing will bring her back.
You said, "I get so annoyed at the dumbest things and wonder why I just can't get my shit together and accept my new reality." I'm right there with you, and most likely lots of others, too. Come back and vent anytime, sister.
Grieve. Say goodbye to the Mom that you had, and say hello to this new person. Maybe you start calling her by her first name, and not Mom anymore. I definitely felt myself disconnect from my dad when things were really bad. I was treating him more like a child (once I actually said, ‘Good boy!’ when he drank from a straw). It’s depressing, it’s sad, I’m not happy about it, but I am accepting of this is how things are. Disconnecting has helped me cope because otherwise I would be such a mess. Maybe I’m delaying the inevitable, or being nothing but an ostrich with my head stuck in the sand, but right now, it’s how I’m coping and it’s keeping me from falling apart.
Hugs, my friend. It’s hard.
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