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Several of you know my story, but in a nutshell: My mother is 84, had a stroke in May 2016, and has been on a slow decline ever since. (Prior to the stroke, she had breast cancer and a fractured vertebra.) In April, she had a UTI that landed her in the ICU with sepsis. In June, another one, which wasn't as serious. Now she clearly has another one. I was ready to take her to the hospital today (which involves a 911 call, so traumatic), but when I arrived, a nurse was there to take blood. Her vitals are all fine, so nurse was unfazed, but she is not eating and not getting out of bed, so I know it's another infection. I am waiting until the morning for blood test results and then taking her to hospital unless she makes a miraculous recovery.


I am an only child and my mother and are very, very (too) close. She and I always fought. She drank a lot. But we also always adored each other and were enmeshed. (My father died when I was 6.) Since the stroke, she has become the sweetest, most vulnerable person. It's shocking, but also wonderful to have a purely loving relationship with her. She is so sweet and vulnerable now - in a wheelchair, in diapers, left hand and leg paralyzed from the stroke - and it is KILLING me.


I cry and worry every day. She will never, ever say she wants to die. I think it might help me if she did accept that and surrender, but she won't. She's scared. I feel stuck in this purgatory between churning with anxiety and being utterly terrified of the grief I will feel when she dies. Which is worse? I've read so many memoirs of women who completely fell apart when their mothers died. It's a whole genre! I know I will be one of them, and I am scared. I have children (16 and 21) and a demanding job. Divorced. How will I function?

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Xina, no, she wouldn't be going to the ER if she were on hospice. They would have to commit to keeping her comfortable and treating the symptoms. It might not be what you're looking for, but I think it's worth having the conversation.

A bigger piece of the question here, Xina, is your mom's competence, which I think was in question when you first came here and mom was about to be evicted due to hoarding. She didn't appear to " get" the seriousness of that situation, either, yes?

Xina, since you are an "only", you have to think in terms of self-preservation.

Do you have to show up for the ER? She's got an aide with her. If you are committed to this course ( as opposed to surgery) then you have to make it workable for YOU.
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Thank you so much, Barb. I will talk to the SW at her doctor's office. My mom is extremely lucky to have a doctor who comes to her home (part of Mount Sinai Visiting Doctors program in NYC). She is just wonderful, but she only met my mom 2 weeks ago because her previous PCP in that program moved. I don't understand how she could be in a hospice program and be whisked to the ER when another UTI sets in, though. That seems the opposite of hospice. But I'll ask. How do you arrange hospice care for someone who absolutely refuses to entertain such an idea, though? I'll talk to the SW. Her doctor seems to want her to have the surgery, which is madness, IMO. All the docs she sees say she "looks good," but they do not know how dramatically she has declined and how much weight she has lost in the past few months. With each UTI, she has been declared "fine" by doctors/nurses who come to her home. A few days later, she's in the ER. I'm the only one who sees the subtle signs!
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Xina, you are PoA and health care proxy, yes?

Hospice does NOT NOT NOT mean letting her die the next time she gets sick.

Call up one of the local hospice orgs ( like MJHS, say)and ask about what you need to get an evaluation. Her doctor would have to recommend it.

Xina, I know that you're stressed to the max here. But since your mom won't entertain the idea that she's got something that can kill her, I think it means you need to step into the decision making role.

If I have one regret, it's that we didn't get my mom hospice services sooner. Hospice meant I had a 24/7 RN I could call or text. Who could get things changed at the nursing home with a wave of her wand. A social worker for us ( and for mom). Someone who could explain options better to us.
Big hugs, honey!!
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NYDIL, it's not that she doesn't want anything. She doesn't accept that any of these options are necessary because she's fine. She has not made peace with dying by any stretch. She just doesn't get it. Can I put her on hospice without telling her?

Again, thanks for letting me lose it here and push back on all suggestions! I am going to slug some wine and watch TV now.
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Hospice isn't what it used to be. There are different plans in place and you can take your loved one to the hospital to receive life saving treatment while getting hospice care. I was worried about this also. Hospice sounds like death, but it doesn't have to be that way for your mom. You can use them to get more resources. Also, there is something called a pic line. It's an iv that is placed under the arm pit and they can receive antibiotics at home with it. My father is prone to UTI's and was hospitalized regularly for them. He almost died and was in the ICU for weeks. Now, he never gets UTI's. I tried a holistic approach and it saved his life. There is def some hope for your mom.
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I don't know what I would do in your situation. "No surgery, no hospice, no more trips to the ER." If she doesn't want anything anymore can you go along with that or are you obligated to do something?
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Golden, I hear you, but, honestly, I have been to a million therapists in my life, and all kinds of modalities - from gestalt to psychoanalysis to CBT; pretty much every single type you can imagine. Not one of them made a bit of difference. I am on antidepressants, and they work well, but the level of stress I'm under at the moment is extreme and medication can't fix that. What I NEED is someone in the trenches with me- someone who can go to the ER with my mom, talk to the docs, manage the aides, manage her money, and on and on. I have friends and family who are loving and supportive (including my kids), but I am IT as far as everything else. She has 24/7 care at home - thank god - but those aides can't do more than care for her daily needs. So it's a no-win situation. And even if I did want a therapist, it takes lots of time to find the right one. It's not like a dentist, where it doesn't matter that much. But, as I said, I have yet to find a therapist helpful.

What horrified my mom about hospice? It means letting her die the next time she gets ill. Do I get to make that decision? Do I tell her I've decided not to take her to the ER again and we'll simply get some morphine?

She refuses to talk about dying and thinks it's absurd that anyone would even bring it up. She is not all there anymore, so there is no way to have a rational conversation about any of this. She doesn't accept any of the options. No surgery, no hospice, no more trips to the ER. Everyone's being ridiculous in her mind. She's perfectly fine. 

As for appealing to her insurance, that sounds exhausting. I am trying not to add to my to-do list. And I'm not even sure that the IV stuff she could get at home is as good as the hospital. It's not clear that she would get the kind of care she gets at the hospital.

Sorry. I know there is nothing to say and that I am resisting all suggestions. And I guess I should feel lucky that my mother loves me so much (though, believe me, while she has always loved me fiercely, she was a mess of a mother 90 percent of the time). There is no solution to this. Hence my dilemma. I just need to vent and be heard. That's all. Thanks. 
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Agree, BarbBrooklyn.
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Xina, What horrified your mom about hospice? Does she understand what it is? Have you talked to any Hospice organizations about how they would approach her situation? It occurs to me that hospice might be able to get the IF meds approved at home.

Also, have you appealed her insurance company's denial of the at home IV?

Hugs, dear.
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xina - it sounds to me like you need some help from a professional. Even a few sessions would help. It is one way of looking after yourself. (((((hugs))))
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Xina--
My heart aches for you. I would have loved to have had a mother who even acknowledged my existence, so count yourself blessed for what you DO have.

Can you lean a little on your own kids? 16 and 21 are adult enough to help out.

This is hard, and as you say, being (too) intertwined will not make this transition easier. I'd take it one day at a time and just let the emotions come as they come and feel what you need to feel and don't EVER apologize for feeling "blue".

Acknowledging the dynamic beforehand will help you to be aware of what it's going to be like when mom goes. I wish you peace.

And be so grateful you were blessed with this love. A lot of people cannot relate to this.
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Blannie, We have talked to four urologists - all at Mount Sinai in NYC, so highly reputable. All have said the surgical procedure is the only option. I guess if a cardiologist can estimate the mortality risk of her undergoing surgery, that will make it easier to make a decision. This is such a crazy and upsetting position to be in.
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I would definitely try to get a second opinion. Do you have a teaching hospital near where you live? Do you feel like this urologist is top-notch? I'd do my own research and look around and get another opinion from someone not associated with that practice.

For example, when I needed a hysterectomy for fibroids, I saw two young female docs. I wanted to keep my cervix and they both said they couldn't do that. So I went to another doctor, an older guy, who said, "Sure, I can do that." And he did my surgery laparoscopically, which the other two docs weren't going to do. I think they weren't skilled enough to do either thing that I wanted. So I had it done the way I wanted and it was a much less invasive surgery.

You could also look at palliative care, which is a step down from hospice since your mom bristled at the hospice idea.
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Thanks, everyone. As I suspected, she has another UTI and is in the hospital again, recovering well, but still, this is insane. Urologist talked to us again about surgery for the huge kidney stone that's causing this, but it sounds awful. Four hours, lying face down so they can go in through her back. (No other less-invasive treatment will work on this type of stone.) I cannot imagine putting her through that. She is frail and confused enough already. She doesn't want to do it. So there's no way to resolve these UTIs. I tried to talk to her about hospice and she was horrified that I would suggest such a thing. While she responds to IV antibiotics, the oral ones she can take at home do not seem to work. She can't get the IV ones at home either - I looked into that. So, blech.
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I too was very close to my mom. I am the only girl, 2 older brothers, dad died when I was 7. My mother was everything to me & vice versa.
She was so active! Worked until 72. Then she began to ail, and I knew that my mom was miserable & she wanted to go ....to be with my dad, her sisters $ brothers, & her mom & dad.
My mom began to get ill & 81, a bypass @ 84, etc. Broke her hip, etc. Got worse with every anesthesia event. 
But her last 14 months were terrible for her, & my brother & I (the other brother was a jerk).
She was 89, and we had to let her go, even though it truly breaks your heart.
Then months go by and you know she is always with you, not physically but in your soul and heart.
Yes it's very hard. You can't ever know if it's the right time but you play with the cards you are dealt.
God Bless & prayers for you and your mom coming your way!
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Very touching emotions that so few understand

Xina
I agree that living in anticipation of the other shoe falling is extremely difficult- my mom is nearly incapacitated from her last UTI and now she's asleep most of the time but she hasn't given me any indication that she's ready to go - in fact, she wants waffles for breakfast

Let us know how the day goes
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Agree, GardenArtist.
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This thread has brought out beautiful, emotional, touching but also wise and mature insights into the relationship between a caregiver and her parent(s). It's inspirational to read such dedicated yet balanced observations.
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I envy the love you have for your moms.  Hope it gets easier
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Xinabess, I am one of those daughters who was "enmeshed" with my Mother. First off, let me say, I totally dislike that term. There is nothing wrong with adoring your Mother. If you do, be proud of it, don't apologize for it.

I was like you, I spent my whole life dreading the thought of losing my Mom. I like you, lost my Dad at a very early age. That triggered an attachment to my Mom that never ever ended. I would say the only bad thing with this attachment is I never tried to make friends cause my Mom was my best friend. I let other friendships disappear cause I always had my Mom.

She has been gone now over two years. I've grieved.............still am..........always will. I think, to be honest, I'm still in a state of shock over it. I sat by her bedside almost 24/7 her last week of life. I am traumatized because of it, to be honest. I should have thought of my own well-being as I sat there thinking "What if she regains consciousness and I'm not there" I had this idea that just before she died she would suddenly come to and look at me and smile and say "I love you dear" one last time.
It never happened. In fact, for all the hours I spent there, she ended up dying when I wasn't there.

You may fall apart for a little while after your Mom dies. Or like me, you'll have your heart crushing moments but you will be stronger than you think you are. Trust me, you are reading the comments of a true, dyed in the wool Mommies girl. It's hard, it's desperately hard sometimes but you will get through it. If I can, then anybody can. Have some faith in yourself.
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Dear xinabess,

Sending all my love and hugs. So sorry to hear of everything you have been through with your mom. The current situation is hard but also when our parents pass that too will be hard but in a different way. From everything you are saying you are doing the very best you can for her. If you are able to consider some counselling or a joining a support group. I wish I had before my dad passed. I never realized how hard it would be to care for him at home. He didn't want to go to a nursing home but the last year together was the hardest. Thinking of you! Please know we are here for you.
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my heart goes out to you. I am so sorry for what you are going thru. I am going thru the same thing with both parents 92 incontinence, bedridden, dementia, alztimers, sepsis for both, mom once, dad three times, and that's not all of it. I grow closer to my parents more each and every day now. was not close to mom growing up she also drank. was always close to my dad. have four sisters who could care less what happens to parents. haven't seen or called parents in years and years. I look at it as its my sisters loss and my gain having them to myself. right now they are in rehab both of them together as they needed eight weeks or so of extra drip antibios that I couldn't do at home. they just celebrated there 73 years of marriage in the nursing home. they will soon be home again and I will move back into their home and my husband will come back and fourth. hubby has Parkinsons Disease. how do I get thru it, well, I cry a lot when I am alone like you. I pray a lot also. at night when I finally get home from the nursing home I think of all of the wonderful memories I left the nursing home with. I think of all of the words of wisdom they both gave me that day. I think of the smiles that I was able to put on their faces that day and I block out all of the painful negative issues that I had to face. my parents brought me into this world and never stopped loving me and I will see them out of this world loving them just as much.
everyday I cry driving to the home to see them but once I see their face light up when they see me walk in I thank god for the memories I am about to receive that day as I don't know if their will be a tomorrow. is it hard? I cant think of any thing in life that is worse that watching a love one die slowly and not being able to do anything to help them. be strong and show your love to your mom every day you see her and the beautiful memories that you are having spending your time with your mom will become priceless when she is gone and will help you get thru it all. that is how I get thru it....good luck
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I'm single, never-married, no kids. One brother who wasn't involved with caregiving for my mom or dad. My mom just passed away in May and I was her sole caregiver for 15 years while she lived near me. At the end, she was also a very sweet, gentle woman. Prior to that, I was pretty angry with her because she never stood up to my verbally abusive father when he went after my brother or me when we were kids. I worked through that anger through counseling, so that in her final years, I was taking care of her out of love.

I was blessed because my mom was ready to go and told everyone that. She was 97.5, so had some years on your mom. I felt incredibly responsible for her. But when she passed away, I felt like it was her time. I was at peace and ready to move on to the life that she wanted me to have. I'm sure your mom doesn't want you to fall apart when she passes, just like you wouldn't want your children to be buried in grief when it's your time.

I will say I was very emotional when mom died. Weepy at the drop of a hat. Friends and hospice employees mistook that for abject grief. For me, it wasn't grief, just the emotion of recognizing that a long and decent life that had come to its end.

It's now three months later and I feel very blessed to have spent that time taking care of mom and I feel at peace with my care of her. I feel excited about my future, where I can now make decisions I had put on hold because of mom.

Please get some counseling if you feel you can't handle the emotion of your situation. That's perfectly normal. You may also be experiencing "anticipatory grief", which I had more about my dad, probably 15 years before he died. When he got older and lost some of his "roar", it was hard for me to accept. A counselor helped me work through that. {{{Hugs}}}} you are stronger than you know.
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Xina, hugs to you, and hats off for understanding your feelings and articulating them so well.

Your mother doesn't want to Die! I don't think many folks do. I'm not sure what you think wanting to die is a criteria for.

Are you asking if it's time for a hospice Evaluation? If you are your mom's health care proxy, you can request a Hospice evaluation and find out if she qualifies ( her doctor has to recommend this).

We got great clarity from hospice Evals for my mom, both times. They explained very, very thoroughly what they would and wouldn't treat and how they would handle various situations. It was not a one size fits all solution by any stretch.

Your mom can say yay or nay to hospice and it might start a fruitful discussion about the stress these ER situations put on you both.

I'd start calling around to various hospice organizations after you speak to her doc.

The terror of losing your Mom? Xina, you sound like such a strong lady, made so in part by a tough mom. We internalize our mom's, i think, and honor them both in the things we do the way they did, and in the things we've made improvements in.

It must be bittersweet to suddenly have this docile sweet mom to love. (((((Hugs)))).
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I wish I could offer some advice but I can only offer consolation. You certainly have an emotionally challenging situation to handle. Please know that I sympathize with you and am trying to think of something to write to help you but at this moment I can't think of anything insightful.
I am so sorry for the pain you're experiencing.
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