About My Mother

145769-425x395-80th_bdayMy mother turned 80 last Saturday. In the weeks and days leading up to her birthday, I held my breath, hoping she would stay healthy enough to attend her birthday party. Each time I spoke with one of her caregivers in the weeks and days leading up to her birthday, I told them, “The goal is to keep her out of the hospital at least through her birthday.” She’d been doing better since her last hospital admission over Thanksgiving. A couple of weeks before her birthday, she and I had a forty-minute telephone conversation. The first real conversation we’d had in many months. A snippet:

“What day is tomorrow?” mom asked.

“Saturday,” I replied.

“You get to sleep in, then. Catch up on some rest.”

“A little,” I said. “At least until the cats start jumping on my head asking for breakfast.”

“Here’s what you do,” she said. “You put a can of food under your pillow, and then when they start bugging you, you pop it open, put it on the floor, and go back to sleep.”

Mom was feeling good enough on that call to problem solve, and be funny doing it.

Mom’s 80th birthday fell on a Saturday. I took off the Friday before the big day so I could make the dishes I was bringing to the party and be all set for the drive to Houston first thing in the morning. I wanted to get to my sister’s house early to help her get ready for the party. At at 8:30 Friday morning, as I was still lolling around in bed, the phone rang. A Houston number. Shit.

“Hello?”

“Hi, Ella. It’s Susan. Your mom’s okay.”

Susan is the head nurse at mom’s assisted living (AL). Whenever her calls begin with “Your mom’s okay,” my mom is not okay. She’s not at risk of imminent death. But she’s definitely not okay.

“She had a fall on the way down to breakfast. We found her on the floor by the elevator. She’s okay, but she bumped her head. She has a little scratch on her cheek. And she says her knee hurts. The paramedics are here.  I know tomorrow’s the big day, but we’re sending her to the emergency room to get her checked out.”

I’d recently had a long conversation with the physician’s assistant (PA) about mom’s frequent trips to the emergency room, and had asked if we could do anything to try to limit them. I asked about hospice. The PA didn’t think my mom would yet qualify for hospice, but she would ask the doctor to evaluate her if I wanted him to. I asked her if we could better manage her care without frequent trips to the ER, short of getting her on hospice care. The PA told me that AL erred on the side of sending people to the ER, and that I always had the right to refuse. The problem was that oftentimes, it’s hard for family members to make the call whether it’s medically necessary, particularly when family members aren’t there. She told me in the future, I could text her at any time, and she would help us determine what was best for my mother. We left it that we would hold off on the hospice evaluation for now, unless mom’s condition changes. And meanwhile, I would enlist her help if AL was contemplating another hospital visit.

If there’s one thing I’ve learned, sending my demented mother to the ER alone was not ideal, if it could be avoided. Invariably she would be admitted and subjected to all manner of diagnostic tests. Usually they’d determine she had a urinary tract infection (UTI), put her on an IV antibiotic, and send her back to AL days later. Each time she returned to AL after a hospital visit, it took her weeks to get back to “normal,” and often that normal was a step down from her previous cognitive function. The last time she went to the ER, in early December, they kept her for two nights “on observation” and a battery of tests, and then sent her back to AL with an oral antibiotic for yet another UTI.

I didn’t tell my sister right away I’d had the hospice conversation with the PA. I remember her losing it when my father was put on hospice care. It was as if she thought he was going to pull through until the moment they said he could be moved to hospice. So I knew if I mentioned hospice for our mother, she’d panic. She’d think the end was nigh. Even though the end might not be nigh for six months. And even then, it was difficult to predict. She still could be with us in six months, and be certified for another six months of hospice care. The goal was to stop sending my mother to the hospital every few weeks for another round of tests and antibiotics. To treat her for whatever infection she had at AL, and to stop running all the damn tests.

Eventually I told my sister about the hospice conversation. I needed to prepare her. I needed to plant the seed. To get her thinking about shifting my mother’s care from aggressive to palliative.

“She’s not anywhere near that point,” my sister protested.

“It’s not about mom being near imminent death. Hospice care for dementia patients isn’t like that. It’s not like with dad. And we learned a lot with dad. I would never put mom through what we put dad through. Brain surgery on an 83-year-old man in late-stage dementia? Even the surgeon was upset we’d done that to him.”

“Well if we’d caught it earlier,” she said, “dad would have been okay.”

My dad had hit his head three weeks before the surgery was done. They’d waited three weeks after the fall to admit him to the hospital. When they found out he had a subdural hematoma, they did emergency brain surgery, rather than calling hospice. We didn’t know any better, then. We know better, now.

“He was 83 with late-stage dementia. He would not have been okay. He spent most of the day sleeping. He couldn’t dress himself. He was incontinent. They removed his eyelid due to cancerous cells and he was wearing a bandage over his eye because the doctor couldn’t do the repair surgery in his condition. We were turning him into a Frankenstein. We were struggling with the idea of a feeding tube.”

“That was for mom,” my sister said.

“Yes, that was for mom. And luckily she did not do that to dad. She let him go. And we need to start thinking about what we’ll do if these issues come up with mom. If she falls and hits her head and they tell us she needs brain surgery, I’m not going to do that to her. She can’t walk. She often can’t carry on a conversation. She keeps getting infections.”

“She’s doing great, now. She’s not there yet,” my sister said.

“You’re right, she’s not there yet. But she will be. And I don’t want us to wait too long to get her on hospice care. I want her to have the benefit of the best care possible as soon as possible. I don’t want to put off getting that care for her because we can’t come to terms with losing her.”

“Okay. But she’s not there, yet.”

So here I was, the day before mom’s 80th birthday, a big party was planned, something my mother had looked forward to for months, and the paramedics had her on the gurney getting ready to send her to the ER and AL was seeking my permission.

“Can I talk to the paramedic?” I said.

She put the paramedic on the phone.

“How are her vitals?” I asked.

“Her vitals are fine.”

“Does she seem in distress? In pain?”

“Well, they said she was complaining of knee pain. But she seems okay. She’s talking. Smiling.”

“Is she bleeding?” I asked.

“No, no she’s not bleeding.”

“I don’t want to send her to the ER just as a CYA for the AL facility. Please send her back to her room and we will wait and see how she’s doing.”

And so that’s what they did. Following which, my sister and I had a text argument. My sister wanted them to run tests, do x-rays, make sure she was okay. I told her I was not putting mom through that unless it appeared necessary. I then contacted the PA who agreed we should “wait and see” and if mom appeared to be in pain, she could order mobile x-rays. She also advised they’d done a urine culture on Wednesday because mom seemed a little off, and we were waiting for the results to determine whether an antibiotic was necessary. She’d let me know as soon as the results were back.

Mom made it to her 80th birthday party. I picked her up on Saturday at AL, put a tiara on her head and wrapped a hot pink feather boa around her neck, and wheeled her out to the car in all her birthday-girl splendor. Mom visited with friends she hadn’t seen since my father’s memorial service over three years ago. She got to spend the day with grandchildren and her great-granddaughter, surrounded by balloons and streamers, and a sumptuous chocolate cake I picked up at my favorite bakery in Austin. (My sister gave me a hard time for spending money on an expensive bakery cake and not making it myself. I felt some satisfaction, therefore, when mom said it was the best chocolate cake she’d ever had in her life.) Later, mom would tell me she had the best day she could remember having for a very long time.

When I took her back to AL early in the evening, she was tired. The nurse checked her blood sugar (sky-high from the cake) and helped her get dressed for bed. I noticed in her night-gown that her knee was black and blue where she’d fallen. The nurse didn’t think anything was broken, but said she would order a mobile x-ray to be certain. She didn’t have an ice-pack, so I ordered one from Amazon and put a loaf of frozen bread on her knee. (We hadn’t yet gotten the urine culture back.) I stayed with mom until she was ready for bed, and then headed back to Austin to give Sadie an overdue-dose of subcutaneous fluids. (Sadie is doing spectacularly.)

On Sunday afternoon, my phone rang. A Houston number. Shit.

“Your mom’s okay. We found her on the floor by her chair. We don’t know if she fell, or if she just slid down. She seems fine. She’s smiling and laughing. I just wanted to let you know.”

This time, they didn’t recommend sending her to the ER. Instead, they promised to follow up on the urine culture and the mobile x-ray. Moments later, my sister called me.

“Why am I getting another call that mom has fallen again? What is going on?”

“She’s okay.”

“She’s not okay. I saw her today, and she was not okay. Her knee was black and blue. And now she’s fallen again. If we had sent her to the emergency room, we’d know now what we were dealing with.”

“You and I have a fundamental disagreement about how to deal with this. I do not believe it is best for mom to send her willy nilly to the emergency room by herself every time the slightest thing is wrong just to cover AL’s ass. Wait-and-see is a perfectly okay approach. And they are doing mobile x-rays tomorrow and waiting for the urine culture. What could the hospital do that we are not already doing for her?”

She stared yelling at me then.

“If you’d let her go to the hospital, we’d know what was wrong by now. We’d know what we’re dealing with. We’d know if she’s okay. Nothing’s been done. No x-rays. No urine culture.”

“Why are you yelling at me?” I asked.

“Because I have no control over anything. I have no control over what happens with mom. You say she doesn’t go to the hospital, and she doesn’t go. And I had a hard day. I am tired. I don’t want to deal with this now. I don’t want to talk about this.”

And she hung up on me. The second time in the past few weeks she’s done so.

On Monday, the mobile x-rays were done. Negative, except for osteoporosis in her hip. The urine culture came back. Mom has another UTI. They started her on an injectable antibiotic, which the home health nurse will give her at AL for the next ten days. No hospital visit necessary.

Mom had a good 80th birthday. She made it to her party. She ate chocolate cake and ice cream and her blood sugar went sky-high. She said it was the best day she’s had in a very long time. Hallelujah. This is my goal. I’m going to do everything in my power to make sure mom gets the bits of joy within her reach for as long as she has left. And if that means forgoing a trip to the hospital for another round of tests, that’s what I’m going to do. Because my mother’s joyous moments are more important than stemming my and my sister’s anxiety with hospital visits and doctors and tests. This is not about us. It’s about my mother. Let her eat cake.

About Unconfirmed Bachelorette

Unconfirmed Bachelorette, a/k/a Ella, is a 50-something-year-old lawyer who wishes fervently she could retire from the practice of law and write full time. Never-married-childfree Ella resides in Austin, Texas with her three fluffy black rescue cats.
This entry was posted in Alzheimer's, Assisted Living, Dementia, Elder Care, Elderly Parents, Feeding Tube, Health and tagged , , , , , , , , , . Bookmark the permalink.

49 Responses to About My Mother

  1. I totally agree with your stand. 100%. Good luck with your day to day relationship with your sister.

    Liked by 2 people

  2. ainsobriety says:

    It’s wonderful your mom got her party.
    I’m sorry the rest is so hard. I feel for both you and your sister. You seem much more in tune with how best to handle this.
    She sounds scared…

    Sending you all love and prayers.

    Anne

    Like

    • My sister is fast to act in an attempt to push away her anxiety. Or fear. And we’re conditioned to do all we can to prolong life, without examining the costs. Without thinking about it from the patient’s perspective. I may be better at it because I was with my dad 24/7 when he was in hospice. I slept on a sofa in his room each night. I learned a lot about death. And about a “good” death. So I guess my perspective is a bit different than my sister’s. I’m willing to fight with her, if that means taking care of my mom.

      Thank you, Anne.

      Liked by 1 person

  3. franhunne4u says:

    Between you and your sister you seem to be the older, the more mature, the more grown up one. The one who does not need a doctor telling her what to do. You are confident and you are reasonable.
    Up to a point and can see where your sister is coming from. She said it herself – she doesn’t have any control over this. She is afraid. But she should be grown up enough by now not to let her fear become the ruler over her deeds.
    You have mastered your fear. You really try to do what is best for your mother. When your mother started being poorly your sister opted out of being the one to take the responsibility (if I remember correctly) and you, who live a couple of hundred miles away had to do all the arrangements. Now she has to live with the consequences that it is you who is taking responsibility.

    Like

    • I’ve had a lot more therapy than she has. Decades more. And I have done a lot of reading and thinking about death these past few years. I was so frightened those first nights with my dad in hospice. What if he dies, I wondered. But by the end, I wasn’t afraid any more. Holding someone’s hand as they die teaches you a thing or two about death. My sister did not have the benefit of that experience. She ran from it. I suspect, despite the death of my brothers and father in quick succession, she’s done her best to push her thoughts about death away. And so, as you said, she reacts emotionally without contemplation. I’m glad I’m in charge. My mother probably knew I’d do my absolute best for her when she asked me.

      Like

  4. Happy birthday to your Mom ❤
    I'm happy she's well: 80 years old is a great milestone in her life! Let her enjoy her life! And don't worry she is not alone 😀
    And enjoy these days with her even if there are some difficulties, you will appreciate them later, I assure you!
    Ciao
    Sid

    Like

  5. leggypeggy says:

    Yes, yes, yes! Let her eat cake. And have a pice for yourself too. Hang in there, you’re doing great. I can say that because hubby’s aunt lived with us from the time she was 89 until she was 97 and went into demented aged care. You do what you can to make days good.

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  6. Well done you for giving your mother the chance to have the best day she’s had in ages! Sounds like she could do with a dose of antibiotics every time she falls as it seems to herald the onset of an UTI. Keep her out of the ER as much as you can.

    Like

    • I was so happy she enjoyed herself. Yes, we are discussing prophylactic antibiotics since the UTIs keep recurring. Saying no to the ER this time and establishing a protocol with AL and the PA has me feeling a lot more confident. We can do this! Thank you!

      Liked by 1 person

  7. me-fixing-me says:

    your story made me cry a bit.
    i think you are an awesome daughter – please keep doing what you’re doing.
    x

    Like

  8. Anonymous says:

    You are completely on the right track. Your sister is hoping that the Emergency Room will have a magical effect of being able better to control a bad situation. What many folks don’t realize is the extensive damage it does to take frail old people with dementia to the hospital. Their anxiety and potential guilt about “not doing enough” overshadows their every day quality of life considerations. Good for you for standing fast. And good for you for getting a medical person with a wise attitude to help guide you through. The Home, of course, is going to err on the side of “doing something” as a CYA. I’m glad they went along with you. Happy Birthday, Mom. ❤

    Like

    • This is it, exactly. And each time they send her to the hospital, she’s there by herself. And I’m trying to get around HIPPA to give and get information by phone, 150 miles away. My sister, who lives ten minutes away, often does not accompany her. It’s infuriating. And I do not understand it. With help from the PA, I feel empowered. The AL home is beginning to come around, as well. So I think we’re on the right track now. Thank you, Anon!

      Like

  9. Oh my. Oh my. I’m so with you on this subject. I just returned from a 7-hour-ride down, 7-hour-ride back this weekend to see my mom, in AL, with dementia. 92 years old. When she was in independent living, they called the ambulance every time she fell, or yelled, or said she didn’t feel good. And each ER visit was a horror show. Fortunately in her AL place, they don’t use 911 except for dire emergencies. That’s the way it should be. Let them eat cake and be merry, if at all possible. And with dementia, it’s rarely possible. Thanks for sharing this in your post.

    Like

  10. Judy says:

    I went through so much of this with both my parents as they declined. My heart goes out to you. I remember the phones calls and fighting for understanding regarding my “no hospitalization” orders. I also learned that having my demented mother at the ER was a horror for her and there were other alternatives.
    When my mother fell and broke her hip – I faced enormous pressure for her to have surgery. She was 84 and had almost died from surgery two years before to repair a broken shoulder. I refused it and was told she would die without the “repair.” She was actually able to walk again and lived 3 years after that.
    The doctors and “professionals” put so much pressure on me. Sometimes we have to stay true to our hearts and I’m sorry that your sister is not on the same page as you. I had the opposite – I was alone with the decision making – my brothers were completely uninvolved. I guess each case has it’s own drawbacks and positives.
    Wishing you strength and comfort during such a difficult time.

    Like

    • You must be a strong woman to have stuck by your guns with that kind of pressure. I, too, have decided if my mother breaks a hip from one of these falls, l will decline surgery. I don’t think she’d be a candidate. Her last surgery is what got us on this road: she had deep vein thrombosis and almost didn’t make it. She had many months of recovery, but was never the same and continues on blood thinners today. The dementia has adeed to her decline, and each hospitalization takes a terrible toll cognitively. Wonderful your mother was able to walk and had three more years without the surgery. I hope those who need it can draw strength from our experiences. Thank you for sharing your story, Judy.

      Liked by 1 person

      • Judy says:

        Thank you so much. It sounds like our experience was similar. My mom was on a respirator for 2 months after shoulder repair surgery (which the doctors pressure her to have). After she recovered, which was a miracle, her dementia was notable and you are right about each hospitalization exacting a toll.
        I remember the nursing home called for paramedics on my mom, without realizing she had a no hospitalization order. They called me and I still refused to allow them to take her to a hospital. Those were tough times.
        I feel for you with what you a going through. You mom is blessed to have you and I know you love and appreciate her, too.

        Like

  11. Donna says:

    I think you’re doing the right thing for your mom. If it were me, I wouldn’t want to be hauled off to the hospital for a bunch of tests. Hang in there.

    Liked by 1 person

    • Thank you, Donna! I wouldn’t either. On one occasion, she ignored the paramedics hoping they’d leave her alone. But they took her to the ER because she wouldn’t answer their questions. As it turned out, she was fine.

      Like

  12. You did the right thing! People have such a hard time letting go that it is often to the detriment of the loved one in question. My dad was getting hospice care for my mom when she had Alzheimers/dementia (she passed 5.5 years ago) and was basically treating it like free nursing care and continued to call 911 when she had medical issues and argued with Hospice about it. Eventually they withdrew saying that she was not within 6 mos of dying (my dad took really good care of my mom). That said, he prolonged her (probably not great) life to make himself feel better, as he could not let her go. When her time came (years later) hospice returned and we had the argument again- he wanted to call 911, etc, but this time she (my mom) was in control and decided it was over. I felt like it was her final “up yours, Buddy!” to my dad. hahahah!
    Anyway, my heart goes out to you, having to go though this with both parents. You are doing a good job advocating for your mom, someone has to be in control.

    Liked by 2 people

    • gertmcqueen says:

      I agree! Hospice is not there to ‘prolong’ life (free medical care etc) but to make the remaining life as comfortable as possible. Sometimes a person goes off Hospice if condition improves, as it can. Sometimes, just ‘because’ something can/could be fixed doesn’t mean that is the thing that ought to be done! There does come a time when a person’s desire to be left alone to enjoy their life without the ‘imposed’ opinions of others, however well-meaning, must be looked at and allowed. So by all means, let mom enjoy life.

      Liked by 2 people

    • You make a good point, Betty. My mom took great care of my dad and thought she’d failed when she couldn’t keep him going. She struggled with the feeding tube issue, but ultimately realized my father did not want that. In my experience, it was harder for my mom to set her personal desires aside and do what was best for her husband, than it has been for me as the adult child, and not the spouse. I can see my mom doing an “Up yours, buddy!” It would be a beautiful act of self-determination. Her ignoring the paramedics didn’t accomplish it, so I’ll do it for her.

      Liked by 2 people

      • You know I can totally see how that would be the case, different when it’s your spouse. So I gave my a dad a break on that one. I’ll never forget, right before she died she wouldn’t eat and didn’t want to get out of bed and my dad figured if he got her up it would mean she was better (sound familiar?) so after a few days he was able to get her up, dressed and to the table (where she still refused to eat) and she was like, “grrreat, here I am AGAIN.” I mean, she couldn’t talk but that was vibe I was getting. hahaha!
        Yes, you’ll be her “up yours” advocate! She is lucky to have you:)

        Liked by 1 person

  13. Joy is key.
    While I know anytime a head hits hard, there’s danger. It’s probably what put my dad in a final tailspin and cause all systems “no go”. But I had promised him no extreme methods and what do you call risky surgery with questionable outcomes.
    I do know that ER and hospitals/med staff is overwhelming to the very old even when thinking straight. They need a family member with them or it’s either frightening or chaos – and an ER staff trained to work/used to working with elderly patients. Hang in there

    Liked by 1 person

    • That’s how my dad died: hitting his head. The dementia caused disorientation and he fell out of bed and hit his head on the nightstand. Three weeks later, he had emergency brain surgery for a subdural hematoma. He died one month to the day after the surgery. He was in the later stages of dementia and was fading fast. In hindsight, we never should have put him through the surgery. My sister and I had the discussion about what we’d do if our mother hit her head and needed brain surgery. I think we are in agreement that we wouldn’t do that to her. Hopefully we’ll never have to make that decision. I agree completely that someone needs to be with the elderly in the ER, dementia or no. My sister doesn’t accompany my mom, and I try my best to hold her hand and give the doctors information via the phone. HIPPA makes that difficult. I’ve been in contact with the assisted living near my home that is at the top of my list, and plan to move mom close to me when my sister moves away in September. Hopefully I can infuse her days with extra helpings of joy.

      Liked by 1 person

  14. Kim G says:

    Hola Ella!

    I think you’re doing the right thing, but it’s tough having to both fight your own worries AND your sister, who doesn’t seem to have given this as much thought as you. But an ER is no place for your mother, and even if she went there, her knee would still be black and blue, wouldn’t it?

    None of us is going to live forever. I seem to remember some British doctor’s quip, “Only in America is death considered optional.” But even in America, it’s not. Your mother may not yet be “at the edge,” but it’s time your sister comes to grip with the idea that maybe she’s on the edge of being on the edge.

    Meanwhile, I salute you for your rational and humane approach to the whole thing. Sounds like your mother had a fabulous birthday.

    Saludos,

    Kim G
    CDMX, México
    Where one really gets a different sense of what life’s all about.

    Liked by 1 person

    • Hola, Kim! My sister doesn’t like to think about things. She abides by the family code of burying feelings. Which makes it difficult to have empathy. Instead, her actions are fear-driven. You are exactly right: even if she went to the ER, her knee would still have been black and blue. Which was essentially what I told my sister. Luckily, she had no serious injuries and was back up and walking with her walker shortly after the fall. She did have a wonderful birthday, and has been doing pretty well since. I’m relieved to know I made the right call.

      Saludos!

      Liked by 1 person

  15. I’m so glad your mum got her 80th birthday. Its hard dealing with family who are making decisions from a place in their own anxiety, rather than from what is best for your mum. I know how hard this is

    Liked by 1 person

  16. Your mother’s party sounds like a great success. I went through many crisis with my mother who passed away at the age of 95 three years ago. It is a long and exhausting job to accompany them on a journey that has become much longer due to modern medicine. Bon courage and don’t let it overwhelm you

    Liked by 1 person

    • The party was so special, and my mom still talks about it. She has her pink feather boa hanging from a door knob near her favorite chair. So far, her kitty hasn’t attacked it.

      It is a long journey. My mom’s health has not been great for many years, and even she is surprised she made it this far. Thank you, Isobel.

      Like

  17. David says:

    No sage advice with everyone’s situation being different. Since your mom is in AL, keep her there long as possible. It’s there where she has a measure of independence. And, since you’re making most of the decisions anyway, it’s your call and not your sister’s. You’re the one talking with your mom’s PA and doc. You’re the one the AL place is calling first. When it’s time for hospice, you’ll know it. Lots of best wishes on this.

    Glad Sadie is doing well.

    Liked by 1 person

    • Thank you, David. I hope she can remain in AL for a bit of independence, and also because her kitty can stay with her. Even during her most confused times, she can always find the words to discuss the cat. I have many photos of her petting him, her face lit up with a beatific smile.

      Sadie says thanks. The subcutaneous fluids work wonders.

      Like

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