The Decider

My mother has Alzheimer’s, diabetes, and as of three weeks ago, a broken hip. Shortly after my father died (coming up on three years ago), she made me her legal decision-maker in all things financial and medical. Taking care of mom’s finances turned out to be the easy part. Making medical decisions is decidedly more complicated.

Mom’s decline has sped up over the past six months, with repeat infections (urinary tract and MRSA), as well as a more pronounced diminishing of cognition. She’s fallen several times, which resulted in numerous trips to the emergency room. Sometimes she was admitted for IV antibiotics. Sometimes she was sent to a rehab hospital for physical therapy before returning to her assisted living (AL). With every hospital visit the dementia progressed. She became more confused. She began speaking less. She could no longer answer the phone when I called. Every time she was sent to the hospital with a new emergency, she returned to AL with a new, and lower, “baseline.” She was always worse in the hospital and rehab facilities, and would regain some cognition once she returned to AL and familiar surroundings. And her damn cat. Because of the toll the hospital visits were taking on mom, I began to question whether they were strictly necessary, or whether they were more of a CYA for the AL. On the day before mom’s 80th birthday, I refused to allow her to be taken to the emergency room when she appeared to be fine after a fall. (Had she gone, she likely would have missed her party.) My sister did not agree with that decision. Luckily, it turned out to be the right one, and mom was fine.

I’ve thought a lot about what it means to be a substitute decision-maker. In the beginning, I thought it just meant to make sure the doctors and nurses take good care of mom. And maybe, somewhere down the road, to not allow mom’s life to be lengthened by feeding tubes, CPR, or other “extreme” measures. But over time, I’ve learned that in between those two goals, there are a lot of nuances when it comes to treating a loved one with Alzheimer’s. No feeding tubes. No ventilators. No CPR. That much is clear. But what about pneumonia or flu vaccines? Hospital visits for infection? IV antibiotics? Replacement of a pacemaker battery? Surgery to repair a fractured hip?

I did not have to make the decision about whether my mother should undergo surgery to repair her hip fracture. The fracture was nondisplaced and not causing mom any discernible pain, so the doctor said surgery was not warranted. I’m unsure how much of his decision was related to mom’s diminished mental status, and how much was due to the nondisplacement of the break. Mom is now back at her AL on hospice care. She’s also on bedrest for six weeks to allow the fracture to heal. The orthopedic doctor said he wanted to see her in his office in two weeks for x-rays. I asked the physician’s assistant if we could do mobile x-rays since office visits are difficult for mom. He insisted mom needs to be seen by the doctor. My sister also is pressing for mom to be seen by the doctor. I’m hesitant. Since mom is non-weight-bearing due to the fracture, she’d have to be transported to the doctor’s office by EMS. Since mom is not talking, I don’t anticipate that a physical exam would be of much value. She can’t tell the doctor anything. He may get a barely discernible nod or shake of the head, but how are we to know she’s accurately answering the question being posed to her? And then there’s the stress of the doctor’s visit. She’s hardly communicative at this point; how much would a visit to the doctor set her back?

I talked it over with the hospice nurse. She suggested I look at it in terms of cost to mom, versus payoff. The stress of the transport and visit would be great. The doctor likely would not get much information of value via an examination. The x-rays can be done by a mobile technician at mom’s AL apartment. And then we took it a step further: if the doctor finds the fracture is not healing, would we opt for surgery? I would not. So rather than transporting mom to the doctor, we’ll get mobile x-rays in a few weeks and send them to the doctor. Hopefully the doctor will tell us mom can begin to bear weight on her hip and she can move from the bed to the wheelchair. And once in the wheelchair, we can push her outside to sit in the garden and watch the birds.

My sister isn’t speaking to me. I’m not sure if it’s because I haven’t made arrangements for mom to see the orthopedic doctor, or because I gave her hell for taking away the strawberry shortcake I brought mom last weekend after I had gone. (The caregiver tattled on her.)

“If you take away her favorite pleasures, what’s the point of keeping her alive? Then you’re keeping her alive for you. Not her.”

For now, my sister’s silence is making things easier. I feel more clear-headed. I’m attempting to make decisions based on what my mother would want. Not based on what my sister wants. Or based on my pushing back against my sister in anger. I try to put myself in my mother’s place and imagine what she would want for herself at this point in her life. I think back to when my father died, when my mother said she didn’t want to go on living without him. I think about how she wanted to do less and less for herself, and told me more than once she’s taken care of everyone else her whole life; now, she wanted to be taken care of. I think about my mom’s increasing reluctance to engage in physical therapy. (She’s been labeled “non-cooperative” more than once.) And about the times she’s told me she doesn’t care if she can use her walker; she’s fine being confined to the wheelchair. She’s likes being fed by the caregiver, instead of struggling with the utensils. And she wouldn’t mind if she died of eating too much chocolate cream pie. (Yesterday I brought her coconut cream pie and an empty Greek yogurt container in which to hide the leftovers so my sister wouldn’t take it away from her.)

Yesterday for my visit, the caregiver had dressed mom in real clothes for the first time since she got home from the hospital two weeks ago. The caregiver said mom seemed pleased to be out of the nightclothes. Mom was wearing lipstick, her glasses, and her watch. Her hair was fixed and the caregiver had painted her fingers and toes. Mom talked little. But she said “hi” when I came in. She nodded in response to a few of my questions. When I gave her kisses, she smiled. She petted the cat when I put him next to her on the bed. I brought mom flowers, which I arranged in a vase and set on a bookshelf next to the tv. When I turned my back to the flowers and faced mom, she blurted,

“Watch that cat!”

I turned around, and sure enough, her cat was eying the flowers, his tail swishing back and forth. It was mom’s only full sentence of the day. I love that damn cat.

Being the decider isn’t easy. But I think I know my mom well enough to know she wouldn’t want us to attempt to extend her life by any means, let alone by any means possible. And so I’ll keep the focus on pampering her and keeping her comfortable. And making sure she gets lots of her favorite simple pleasures: pie, the damn cat, and kisses. I may end up completely estranged from my sister in the end. A risk I’m willing to take. Because as the decider, my responsibility isn’t to do what my sister wants for our mother, or even to do what’s best for our mother by some medical standard. It’s to do what our mother would want for herself.

257 comments

  • I like your attitude. Your mother is over 80 and severely suffering from bad health – mentally with the dementia and physically with all those infections coming and going (I have have heard nettle tea is supposed to help with infectoins of the urinary tract, but she might not like that – it’s a herbal tea and not everybody likes the taste) – and with her limited mobility. If she was a cat, you’d probably consider putting her down.
    She is not, so she has to go on through her suffering. Your sister is cruel if she wants to prolongue it endlessly.
    Feed your mom pie! She deserves some pleasure, beside her cat (why do you insist on calling that animal “damned” cat?)

    Liked by 4 people

      • yes you have a lot on your plate, but you are doing just fine! here’s what your last two sentences say…
        Because as the decider, my responsibility isn’t to do what my sister wants for our mother, or even to do what’s best for our mother by some medical standard. It’s to do what our mother would want for herself….
        this is the essence of elder/hospice care
        always remember that it is that very person who needs us that is important to us
        good luck you are doing great

        Liked by 5 people

        • Thank you, Gert! I think you’re right: I am doing fine! I learned a lot going through this with my dad. And I vowed to not repeat the mistakes that were made. I actually feel quite happy and at peace with everything. I know I’m doing my best for her, and I’m fairly certain she’s aware of it.

          Liked by 2 people

  • Lordy, Lordy! You are doing an amazing job, girl. I think you are on point. Know that you mother appreciates all you do. Your sister seems clueless to all the intricacies.

    Liked by 4 people

  • Please, do all your best to secure your mom the most beautiful days for the rest of her life! Don’t bother of the world, your mom has the right to be happy with the things she likes!
    Ciao
    Sid

    Liked by 8 people

  • It’s really difficult. I think older brother ignored what was right in front of his eyes with my dad’s decline because he didn’t want to deal with it. I stepped in and did what dad wanted the best I could. Brother can happily snort and criticize now – but I know he refused to participate back then.
    You might contact the doc and asked what would be gained by hauling her in as opposed to following your instincts.
    Quality of life – and her cat seem to be the best medicine.
    Hang in there – it;s not easy to stand against the wind, but someone must.

    Liked by 4 people

    • It’s odd how they can not see what’s right in front of them. I think my sister does not understand how far things have progressed. She thinks if we throw enough treatment at mom, she’ll get better. Contacting the ortho and explaining to him my mother’s condition (beyond the x-rays) and getting his input is a good idea. He’s a wonderful cat. And he adores his mama. I’m getting pretty good at withstanding the gusts. Thank you, Phil!

      Liked by 3 people

  • You are approaching this in exactly the right way. A dear friend is a social worker in a hospice. She says her role is to find out what a patient wants and needs and to see that those are met. Of course, she comforts the family too, but her first obligation is to the patient. You may be your mother’s daughter, and in this case, you are also her social worker. Keep up the good work. It is a tremendous burden. We’re here to listen and offer support.

    Liked by 7 people

  • Did your mum ever talk when she was more capable about what she wanted, or have any general philosophies on end of life care? That might guide you. When my mum appointed me to take care of her health decisions she was very clear on wanting no treatment at all except pain relief, although I know that the medical profession might have further obligations than that. I know a bit about this area of law in Australia.
    What you’re going through is really rough, especially without a supportive sibling. Take good care of yourself.

    Liked by 4 people

  • “Because as the decider, my responsibility isn’t to do what my sister wants for our mother, or even to do what’s best for our mother by some medical standard. It’s to do what our mother would want for herself.”

    Others have already noted the importance of these last two sentences. No doubt Mom understood this too – that’s why she picked you to make decisions for her when she was no longer able to do it for herself.

    Liked by 7 people

  • yes, yes, yes, yes, yes. You are 100% on track. My heart goes out to your sister, but you are doing the right thing. I have 15 years of experience treating the elderly as a physician, and I have seen so much suffering inflicted by the medical system when we can’t seem to let go. Please pet the damn cat for me.

    Liked by 7 people

    • Thank you, Josie! I You’ve reminded me to save some compassion for my sister, even though she doesn’t make it easy. I’m sure her difficulty lies in letting go. I keep reminding myself that in letting go, I am honoring my mother. I will see the damn cat tomorrow, and will be sure to give him a pet for you.

      Liked by 1 person

    • Do we stop the Oxycontin which will cause unnecessary pain due to the withdrawal of Oxycontin and other meds ?????
      This would fall under the category of suffering inflicted by the caregiver not the medical system ???
      This hits home because my husband has cancer stage 2 of the colon and Alzheimer’s

      Liked by 1 person

  • I totally agree with your decisions. More power to you for sticking with your gut instincts rather than “medical advice”!

    Liked by 4 people

    • Thank you. Your support means a lot. Not blindly deferring to the medical experts, particularly when they do not know the patient, is so important when being an advocate. I’m not sure when, but somewhere along the way I realized the patient and family have a choice.

      Liked by 2 people

  • I feel like you’re my soul sister here. I felt overwhelmed making decisions for both my parents at the same time – my brothers were completely absent. My father counted on me and that job of directing their final years was probably the hardest thing I’ve ever done. I did not have an angry sibling to deal with – just absent ones.
    I am sorry you have such an impossible sister, but your attitude is stellar. You know what you are doing; if she disapproves, it seems to strengthen your resolve. I love that.
    Keep up the great job. I love how you are “treating” your mom. Not with invasive medical nonsense, but with the gift of your love and sweet treats. And of course, her damn cat is “pur”fect.

    Liked by 4 people

    • I know exactly what you mean, Judy. Reading your posts about what you went through have been so helpful to me. I think you’re right: ironically, my sister’s disapproval is providing clarity and strength. This is a tremendously difficult right of passage. I hope that in sharing our stories, we help ease the way for those coming up behind us. I’ll see mom tomorrow, and most certainly will be bringing more pie.

      Liked by 2 people

  • I am just so impressed with how you are handling this. I anticipate something similar with my own mother, who is in declining health, and one of my sisters, mom’s executor. Your posts are educating me a great deal. And giving me some great ammo.
    Thank you so much for sharing this story with us.

    Liked by 4 people

  • E,

    I read this post and the last one together as one piece. You’re doing the right things, the right way. Keeping her in familiar surroundings with familiar faces and her cat are more important. Skilled nursing, not a chance she would receive the level of care you have provided. I don’t envy the decisions you are making, they are hard. Your sister should be glad you have taken this responsibility onto yourself. (Perhaps an f u conversation maybe needed at some point, but save it for now. And, that means treating your sister as the uncooperative witness or client when that conversation is needed.)

    On the personal level, with your mom eating less and less, it will catch up (sad to say). My mom in her two, last good weeks was eating less though she was eating her favorite foods. The only thing she probably missed was a good plate of enchiladas. It is a tough moment for you, and is weighing like the whole world on your shoulders. Hang tough, stay strong the best you can. And, your mom’s cat – absolutely gorgeous. Looks like your #5, LOL. 🙂

    My daughters and I are here in SoCal for their equestrian shows. The Wi-Fi is a little sketchy here at the horsepark, so hopefully this all gets through.

    Be well,
    David

    Liked by 5 people

    • Good morning, David. And Happy Fathers’ Day.

      It seems I can keep the f u discussion in my back pocket for now. My sister has moved on to radio-silence. A reactionary punishment, to be certain. It’s making things easier. I’ve been able to work with the contractor in getting the house ready to list without the necessity of hundreds of text messages with her. I visited mom yesterday and brought her two slices of pie from the bakery (chocolate cream and banana cream). I also brought an empty Greek yogurt container for hiding the leftovers so my sister won’t take them. Mom was having a good day. She ate all of her lunch and a good bit of pie. After the pie, she started talking. In full sentences. She hasn’t done that in quite some time. So once again, we see there is a correlation between cream pie and good days. Yes, that gorgeous hunk of cat is destined to be #5. He’ll be the only male. I’m guessing he and Lucy/#4 will be fast friends. They both desperately want to play, and the Three Black Cats can’t be bothered with something so unbecoming as playing with a youngster. She’ll bop them on the head with a paw, and they respond with a steely stare. Which is an improvement over hissing.

      Thank you for your support, David. I’m hanging in there.

      E

      Liked by 2 people

  • Hola Ella,

    I think you’re doing the best thing for your mom. Her story reminds me of the story of my friend G’s mother. G’s mother died of pneumonia after having reached a state much like that of your mother. But the reason she died when she died is that my friend and her siblings refused to permit the doctor to administer antibiotics. After having called G’s 3 siblings who all said no, the Dr. made a final attempt and called G. G also said “no,” as it was her mother’s wish to not be kept alive longer than necessary. The doctor was very pissed off at G and her siblings, but there was nothing he could do. And G’s mother died the death she wanted, free of medical interference.

    So be strong. I think you’re doing the right thing. If only your sister could see that. But here in cyberspace, we’re all rooting for you and your mother.

    Saludos,

    Kim G
    CDMX, México

    Liked by 4 people

    • Hola, Kim. It takes a lot of courage to stand up to doctors the way your friend G and her siblings did. I think it also takes a lot of courage for my mother to say, “no more.” My sister keeps pushing her. I keep reminding my sister we’re here to support mom and let her choose how she wishes to spend the rest of her days. It’s about time she was allowed to decide. She spent so many years taking care of everyone else, and not making choices that were all her own. It’s her turn.

      Thank you, Kim G in CDMX. (I’d just gotten used to DF.)

      Liked by 1 person

  • Such tough decisions. I don’t know you but I think you’ve got the right approach. Regardless of what anyone else thinks. Dee

    Liked by 4 people

  • The Decider – provokedblog

  • Excellent post…..I can totally relate, as I am in an extremely similar position myself. Thanks for sharing it. I wouldn’t wish Alzheimer’s/dementia on my worst enemy!! The MOST heartbreaking of human ailments, in my humble opinion.

    Liked by 4 people

      • Yes, it sure is. We had to put my dear sweet mom in a nursing home 2 1/2 years ago after my dad took care of her as long as he could . Putting her there, though, has been gradually killing HIM now too though. And now he has just been put on Hospice care with a terminal respiratory disease. I have no doubt that his extreme sadness and depression over her situation and the loss of having her by his side is what has led to his current health crisis. … Not to mention the $6,000.00 a month out of his pocket going to her nursing home. It’s a hideous disease that affects everyone in the family.

        Liked by 1 person

        • Oh, so sad. I hope hospice helps to ease his burdens and bring him (and you) some peace. My mother took care of my dad until he fell and suffered a head injury. In the last months, she had a difficult time of it, but dad refused outside help. I know she misses him and I expect her terrible losses (she lost both my brothers and my dad in eleven months time) surely has sped the progression of her dementia. It is a sad time. But I am grateful to have these moments with her. I expect cream pie is going to be filled with meaning and memories until the day I die.

          Liked by 1 person

  • Oh, I definitely do not envy your position as decision-maker. I am the oldest in my family so it is very likely that I will find myself in a similar position when my parents are that age. My sister and I have been aware of their wishes in broad strokes for quite some time but it is always more difficult when painful things change from nebulous abstract things that will happen someday to concrete things which will happen tomorrow next week next month next year. I hope you can salvage your relationship with your sister but do not let her make you feel bad for following your mom wishes because, in the end, it’s not about you or your sister. I wish you enough patience to deal with your sister when necessary. I wish you enough strength to get through the sad times coming and I hope you have enough happy memories to keep you smiling after the crying is done.
    Rachel

    Liked by 3 people

    • Rachel, you are so right. It is difficult to imagine the precise events with which you’ll be faced and have a specific plan for how to deal with them. When my father died, my mother was able to imagine a bit more clearly, and give more guidance. But still, I never imagined she’d become bedridden and largely unable to communicate. Even so, we are having lots of happy moments and creating those memories. Thank you for your kind words.

      Like

  • I so connected to this and it is also in perfect synchronicity with today’s guidance on the Mayan Calendar about taking root in our own truth. I am so glad your mother chose you. Being the “decider” is such a responsibility, and the only way to have peace I would think is to be grounded in confidence of your own decisions – which is hard to do when others from outside second guess. I am experiencing that same place of making effort to take root in my own ground of Truth. My blessings to you for the awesome responsibility you are carrying born on Love. in lak’ech Debra

    Liked by 3 people

  • I am a nurse, my last day in caring for the developmentally disabled was Friday, I start another job on Tuesday with the elderly in an adult day care. Here is what my opinion is for what it is worth. You are on the right track. It has always been my opinion that at some point quality of life becomes more important than quantity of life. That is sometimes the difficult point to see, especially for family. We are selfish and want someone to be kept alive for us…not for them. That sounds harsh but its true. It sounds like you have confronted that well, your sister has not. As far as the doctor? Its not about your mom, its about being paid for an office visit. And its not entirely his fault; its in part the insurance industry regs and the doc’s ability to meet his financial obligations. In the end many medical decisions come down to the almighty dollar, and that is sad in itself. Your healthcare worker caring for your mom sounds like a gem – she gets it. Make mom feel better by keeping it as “normal” as possible. Fix her hair, do her nails, dress her up pretty and feed her whatever makes her happy. Don’t we say eat dessert first because life is short? None of us knows the day or hour of our last day, but your mom’s is closer for sure. Eat dessert! There is no harm in that. I would rather go out enjoying what I can in life. I want to be holding a glass of wine, surrounded by family, with a juicy steak in front of me and chocolate cake for dessert. Knowing me I will eat the cake first and wash it down with the wine! Hang in there sweetheart – you are doing what’s best for mom. Sister will realize that one day, I know it in my heart.

    Liked by 5 people

    • This is valuable insight, Suzanne. When the doctors say they want office visits and x-rays, I wonder if they have even visited with the patient or looked at the chart. I got the feeling the ortho never saw mom in the hospital; only his PA did. It’s so easy to follow medical advice blindly, without considering all we know about our loved one, which is much more than what the doctors know. And you’re right, they don’t have time to learn due to how they are compensated (or not compensated) for their time.

      I learned when my father was subjected to brain surgery after a fall (he was in mid-to-late stage Alzheimer’s), and the surgeon blurted out that he didn’t know why they did the surgery on my poor father, that treatment is not always the best decision. My mother considered a feeding tube, and realizing it was for her, not my father, she decided against it and we moved him to hospice. It was then I began to learn about a different sort of death. A more compassionate, dignified, and (hopefully) more peaceful death.

      Mom’s caregiver is wonderful. I have grown quite fond of her, and am so grateful for her! It is clear mom adores her by the way she smiles at her. Her own mother died recently, and she says taking care of my mother helps her with her own grief.

      I think sister may be beginning to realize already. Thank you, Suzanne!

      Liked by 1 person

  • This is a beautiful expression of love for your mother. I’m sorry that you’re going through this, and wish your mother peace. My grandfather was the same way. After suffering multiple strokes, heart attacks, living with diabetes, and COPD, he wanted no extreme measures. He expressed countless times how “ready” he was to go. I loved him dearly so it was heartbreaking for me to hear him clearly verbalize his readiness to die, but when he did go, I almost felt a sense of relief for him. I knew he was finally done suffering; living a life he felt bound and trapped in.
    Obviously, I don’t know you or your sister so I’m hesitant to offer advice. If I may say anything, I would say one thing. While thinking of what your mother would want, consider what she would want for the two of you. Would she want her daughter’s not speaking or estranged? As a parent, I can’t imagine that.
    I wish you and your family peace and love.
    Excellent piece.

    Liked by 4 people

    • I try to prepare myself for mom’s death, and I imagine there will be some relief amidst the sadness. Dementia is such a long, painful road. As far as my sister and I, we already were somewhat estranged when our father died. We’ve spoken more and spent more time together since mom got sick than we had in many years. So if we make it through this, it looks like my mother will have brought us closer.

      Thank you, Kaffe!

      Like

  • Absolutely inspiring! I can relate because I have had the experience. It brings back memories. Your sister means well. Stress is trying. I’ll pray your relationship is rekindled. soon.
    Bless your mom! Bless your heart! Continue to give mom life’s simple pleasures! Not to mention that lovely ‘damn cat’.

    Liked by 3 people

    • I’m sorry you’ve had this experience, but I’m happy for the connection. My sister does not do well under stress; that’s for sure. That “damn cat” is a fluffy little lifeline. Thank you, SS!

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  • It comes after an election campaign in which neither of the major parties raised substantial policies in preventative health, although the government claimed the growth in health expenditure was unsustainable.

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    “These are essential for us,” Mr Macey said.

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  • Reading your wonderful post was like telegraphing my upcoming life. I’m the Decider in Chief. My folks are near 90 and failing. Dad won’t go to AL. Mom is so ready and my sister is a jerk. Only thing missing is the damn cat!

    Liked by 3 people

  • The Decider – basheerabdulwahab

  • This is such a powerful and emotional post. As a person in the medical field I truly thank you from the bottom of my heart for putting your mothers wishes before everything. It is her life in the end and if your sister can’t accept that, too bad for her. You are doing what is best for your mother. Be strong. ❤

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  • The Decider — Unconfirmed Bachelorette – Crochet and Love

  • Thank you for sharing your intimate thoughts on the best care for your mother. There are so many interventions today that it is hard to hear the inner self. Keep strong.

    Liked by 5 people

  • Wonderful blog by inspiring lady – meyasroar

  • Can empathise with your situation. It is never easy to be the devider. I agree, life is only worth it if it has the simple pleasures. Pie, kisses and the damn cat!
    💕

    Liked by 5 people

  • el Decididor – apserranoblog

  • Thank you for sharing this post. I won’t say your sister is stupid but I don’t see myself not trying everything to keep my mother alive. I hardly think I am as strong as you are in putting your moms’ wishes before yours.

    As for you and your sister, I hope you both make amends. You are family. Plus there is also the cat to take care of. Bless you.

    Liked by 2 people

    • It might not be as difficult as you think to put mom’s wishes first. I imagine how much my mom has sacrificed for us her whole life, and think it’s time I stopped being such a jerk. Admittedly, it has taken me a long time to get to this point. My sister and I will be okay. Maybe not great, but okay. As for the cat, my mom’s caregiver is spoiling him rotten. And when the time comes, I’ll do the same.

      Liked by 3 people

  • out of three living sisters, one was still speaking to me in the weeks and months after my mom passed – because I did what Mother wanted, and not what they wanted. One passed a few years later without ever forgiving me, one hasn’t spoken to me in years and the other is still my only real sister. It’s not easy, but you do what you have to – for your mom, not for your sister, who sounds a great deal like the sister I called “the evil one.”

    Liked by 3 people

    • I agree, Suzie. It’s really not a difficult decision for me: I do what my mom wants; not my sister. If she stops speaking to me because of it, that’s her choice. Good for you, for doing what your mother wanted.

      Liked by 1 person

  • You aren’t doing anything my mom didn’t/wouldn’t have done when her mother was in the nursing home, slowly declining from Alzheimer’s. For our family, this was a 12-year decline. I do feel bad for you – my mom had Power of Attorney and the full support of family in any decisions she made for my grandma. Grandma’s sister (my great-aunt who is 15 years younger than grandma) agreed with my mom and assured my mom that the decisions being made were the right ones. Grandma was allergic to chocolate, so everyone knew not to bring it when they visited the nursing home.

    The nursing home felt my grandma needed more care, and put her on hospice, which eventually ended when it was found my grandma really didn’t need that care (and she gained weight while receiving this care!). Thankfully, there were no end-of-life decisions that needed to be made in her final days that weren’t already decided upon at the onset of dementia – grandma died in her sleep at 92 years old, peacefully. No illness (she hadn’t had any type of infection in 3 years), no pain. Just went to sleep.

    Please continue to do what you are doing, and in the end, it will only mean your mother was given the quality of life she deserved to have, even as she declined. She is living on her own terms. Trust me, she wouldn’t want any more than this, and she’d thank you if she could!

    Liked by 4 people

    • It sounds like your mother took wonderful care of your grandma. Twelve years. Such a long road for all of you. Your grandma died the way I wish for my mother: peacefully, no pain, no illness, in her sleep. My mother is living on her terms. Now and then she will make herself quite clear when she does or doesn’t want something. I love it when she does that. The rest of the time, I think I’m making accurate guesses. Particularly when it comes to pie. Thank you for your kind support.

      Liked by 1 person

      • You ARE making accurate guesses, and yes, pie is always an accurate guess. I’m glad you only want for your mom what any well-intentioned individual would want. You are most welcome. I’ll be following you on your journey, I want to be able to know how she is doing. 🙂

        Liked by 1 person

  • The Decider is a tough role but usually only given/taken by someone full of love, concern, and thoughtfulness. Thank you so much for sharing this. All caretakers end up with different stories and needed to make the best choices they can so it’s so important to hear the struggles of weighing complicated pros and cons.

    Liked by 4 people

  • This is a hard time but I am glad you are taking a stand. I manage a lot for my family as well and I bet it’s overwhelming.

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  • Hi.finding myself in the same position,the main carer for my ninety two year old mother with a younger sister who has ideas not akin to mine. I can see the dilemma in doing what you know your mum would do if she was back to her fun loving self and what your sister wants. It is a poisoned chalice as when your mother finally does leave you,the sister is still there and is still blood. What then of a relationship.Hard choices.

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    • It is a difficult situation. I am doing what my mother would want, and hoping my sister will not hold that against me, given time. I think she will come around. Despite her gruff exterior, she is fairly sentimental. Seeing as I will be her last remaining sibling, and both our parents will be gone, I expect she’ll soften. But even if she doesn’t, doing what my mother would want remains paramount.

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  • Good decision! It is always hard being the caretaker and decision maker for anyone, but that is the main goal to make the decisions that they would make if they were able to make them for themselves. Even if it ticks off other people…there is a reason you were chosen for the job…you are trusted to do it correctly!

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  • I read every word thinking of my mother who died in September at the age of nearly 97. She was very active and functioning mentally fairly well until the last few months when she too suffered several falls, broken bones, mental decline and lots of pain. We kept her at home with wonderful Hospice support. In rehab Mother asked how long it would take to die if she stopped eating, and she had long expressed a wish to die. I remarked to my sister that I wished we were in Oregon (where I live and which is a “right to die” state). She said that decision should be up to God. Why, then, I wanted to say, do we interfere to prolong life?
    On the bright side, what you are writing here will be a great addition to a memoir, should you choose to write one, or a book about being the Decider. I felt free (and motivated) to finish and publish my memoir after Mother died.

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    • Joan, I am sorry for the loss of your mother. It must have been heartbreaking to see her in such pain at the end of her life. Hospice is a godsend. It is a real shift in thinking from the medicalization of the elderly. My sister has had a more difficult time moving away from the idea of prolonging life versus providing comfort and quality of life. We have the comfort medication there for her when she needs it. And lots of TLC. I have been working on a memoir in earnest, of late. How did you know? I’d love to hear more about yours.

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      • Thank you for your kind words. About my memoir, I had written many essays, poems, and humorous (I hoped) articles over the years, some of which were published. Mother read many of the pieces and expressed dismay over some hurtful experiences she hadn’t known about, so I didn’t feel free to seek publication until she was gone.
        If you go to Amazon.com>books and type my name, Joan Zumwalt, you will see the memoir and a novella I’ve written. Click on “Hardcover” and “Look inside” to get a feel for it. I divided it into four sections: three places I’ve lived and a final one called “Life Stories” for more general pieces. I think ideally memoir might center on a particular time or experience, like “The Decider.” Have you read WILD by Cheryl Strayed? It centers on her hiking the Pacific Coast Trail but flashes back to life experiences. As an aside I got very impatient because except for her mother’s death, Cheryl brought most of the other woes on herself, and boy did she have woes!
        I have started a blog which I hope may help other writers. https://joanzumwalt.com.
        Happy writing!

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  • It is so heart breaking to be in your position dear writer. But more than anything I think you are brave to take the decisions keeping your mom’s wishes in mind. Sometimes it becomes so much harder to take decisions when opinions are pouring from everywhere but you clearly did the right thing by thinking about your mom and not of others opinion.
    I think your mother will be silently thankful to you.
    Ps : That damn cat is good . (:

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      • You are confident woman who can take decisions on her own. Do not let anyone tell you otherwise! 😙

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  • Love this article. You are such a beautiful writer. I could picture everything as I was reading through the article. I don’t know what this is like but I am sure I will soon enough. Good on you for advocating for your mom!!

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  • Your awonderful person. keep doing everything possible to see that ur mom can live one extra day. Life wirhout a mother is very empty and lonly. As for ur sister, shr will regret later when ur mom is nolonger around. And trust me that regret pains alot. May the good God continue to give u more courage to take care of your mom…..

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  • I felt lucky reading this post tonight and I will remember to do this for my mom and dad. Yes, the last sentence was excellent, it pinned to my head.

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  • WOW!!!! My husband has Alzheimer’s and he is 80 as of July 6. He also has COLON cancer. Stage 2 cancer was his diagnosis last year Oct 2015. The tumor was removed and no bag was put on. The surgeon decided it wasn’t necessary at his age and with Alz. So he sits on the toilet day & night. Feels like he has to go and he can’t!! He naps until 11 AM and goes back to bed between 3 and 4PM. Wants to eat all of the time??? He has spinal stenosis in the lower back and bulging discs. The terrible pain is controlled by Oxycontin twice a day along with Tylenol. After his surgery he was in a nursing home and when 3 months was up he was discharged. The incision was healed!!! So, am I supposed to stop his Alz meds, heart, cholesterol, urinary leaks, drooling and several other MEDS???

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    • Oh, Joyce. I am so sorry for your husband’s pain, and yours as his caregiver. When Medicare skilled nursing coverage is up at the end of the three months, it leaves us in a terrible position. I don’t know if Hospice is appropriate for your husband at this time, but you might reach out to them to see. If your husband is accepted for Hospice care, Medicare provides 100% coverage for care related to the Hospice diagnosis, not to mention the support of visiting doctors, nurses, and home health aides. The emotional support they provide the caregiver is a godsend.

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  • People with dementia have brains that are shrinking. Show your sister Sherwand Neuland’s book “How We Die”-the dementia chapter. She is being ignorant. Another woman wrote a book yrs. ago about her mother-in-laws altziemers. Thought mom-in-law was purposely ignoring her. Hated that author ever since. I use to cook in a nursing home and it is lonely/boring for the residents. They may not remember you but you remember them. VISIT! Dont be one of those louts that only visit on holiday. P.S. sugary stuff or caffenated could cause her UTI. Drink more water

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    • Thank you for the book recommendation. My sister also thinks our mother is purposefully ignoring her. On her good days, she just might be! 😉 Nursing homes are lonely places. Especially for those who are not mobile and spend their days in their rooms. We should all visit often!

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      • My aunt visited my grand mother(to keep an eye on conditions).Gram no longer remembered her or spoke much. So Aunt Dee would talk to other patients

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  • Not an easy role whatsoever but I think you are handling it in the best way possible. There will come a point when she may not have much taste for food so isn’t it great to know that she had all of the things she loved to eat while she could!

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    • Thank you, Debbie. The day mom no longer wants sweet things will be a sad one. I think about that each time I bring her a treat. There are few pleasures remaining, and so long as she can enjoy, I’ll be bringing them to her.

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      • I’ve been through illness and the death of both of my parents sadly in the last year and a half and while there were many incredibly stressful times, there were so many good moments too, often the simple things like what you are describing. It’s good that you are capturing these positive memories as you can draw on them and smile when you feel like crying or get angry.

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  • My Grandmother has Alzheimers and my mother is the “decider”. I can see what a terrible toll it takes on her, having to make decisions for a woman who was once very much the matriarch of our family. Your words were exactly what I needed to “hear” today. Sending love and postitive thoughts your way xoxo

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    • It is a difficult time, Riana. But there is so much meaning, and sweet memories we’re creating. It’s hard when the strong women need our care, but I see it as my mother’s turn to rest and be fussed over. Thank you for your kind wishes.

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  • I took my commitment to be my mother’s health care POA very seriously and sat her down to ask a series of morbid questions. She gladly obliged and gave me a deep look into what her true wishes were when she was of sound mind and healthy. One of her wishes was specific to funeral arrangements. She did’t want an open casket and my brothers were very agreeable however my aunt, my mothers sister, asked to have an open casket ceremony. Now knowing that my mother specifically did NOT want anyone to see her after death, but also hearing my aunt request to see her for her own closure was something that I needed to consider. In the end I agreed to have a “family only” open casket ceremony for those who needed closure. It was the best compromise to help support my aunts needs and my mothers wishes. Very hard balance but I sleep at night knowing I did the best that could be done. Cheers and prayers

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    • No matter how many questions we ask, it’s difficult to envision every possible issue that may arise. It sounds like you came up with a compromise that brought you and your family peace. No small feat. I can see why you sleep well at night. 🙂

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  • You are an incredible, compassionate, strong woman who has become the person your parents always wanted you to be. I know it is difficult when family relationships sour over the aging (and passing) of parents. A few years ago, I watched my spouse’s family shatter after the loss of both parents and the heartbreaking ramifications of that splinter. The happy ending to that story is the reconciliation of relationships (after the brother’s heart attack that put priorities in order). I hope your experience won’t be that dramatic, but I encourage you to continue “doing what you know is right” and you will be able to live with yourself no matter the results. And your mother knows that she made a wonderful choice in proclaiming you “the decider”!

    (As for “that damned cat” – I can see the affection you use in those terms!) Hang in there!

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    • Thank you, Alexandra. It’s taken a while, but it turns out I’m a pretty good daughter. 😉 Although my sister and I have had conflicts recently over my mother’s care, her illness has actually brought us closer. We’d had a splintering years ago, and I did not believe we could repair our relationship. I’m still unsure whether it’s possible, but we have called a truce of sorts. The damn cat is a character.

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    • Phil, I am hanging in. Mom is bedridden and will be from here on out. She has good days, and not so good days. Sometimes she’ll blurt out something that makes complete sense: “Your underwear is showing.” It was. Other times she’ll go days without talking, and when she does, it’s a bit of a jumble. But she always smiles. And she never turns down pie. I feel lucky to have this time with her. Thanks for checking on us. 🙂

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  • I’m sorry for you as well as for all of your dear ones. Thank you for sharing about the times in life when no easy answers exist, as eventually they happen to all of us, those of us fortunate enough to love & to not die very young.

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  • My mom suffered from Alzheimers for two years. She passed away last April. I totally salute you for all your brave efforts to stand by her because it isn’t easy taking care of someone who has dementia. My dad did all these during my mom’s worst moments. I tried to help but I went to Dubai for work when she was sick. It was heartbreaking and I had anxieties watching her mind and body collapse. Your story is really inspiring. I will repost my previous blog to my new site. It helps to read other people’s experiences. Makes you feel you weren’t alone on the same journey.

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    • I’m sorry for the loss of your dear mom, Jen. Watching a loved one decline with Alzheimer’s is heartbreaking and causes much anxiety. We do the very best we can under trying circumstances. Thank you so much for your support.

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  • It’s so good to see you care for your mother in times where children don’t do it.
    This is her second childhood where she really needs your support and help now.
    Your love for your mother is platonic.
    Stay blessed and may God give you enough strength to look after your mother and may the almighty bless her speedy recovery.

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  • I can not believe the situation you are in and the great deal of responsibility it comes with! Your mom clearly trusted you when she names you in charge of health and finances. Hopefully your sister will understand.
    All the best

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  • I thoroughly enjoyed reading so vividly the care and concern you have for your mother spilling out onto my tablet face. Such difficult decisions. Suck brave choices. Bravo!
    Please feel free to check out my very first blog at masterhead69.WordPress.com

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  • You’re doing all the right things. Dementia is so terribly hard. My heart goes to you and your mother. I watched my mom struggle thru this with her mother. God bless

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  • Thanks you for your poem. I didn’t read most of the previous comments, but I’m sure they’re probably similar to mine. It also caused me to reflect on my Mom’s experiences with my grandma, who passed away a year ago.

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  • I’m so sorry you are going through this with your mom and your sister. I can’t imagine getting to that point with my parents, but it will happen, and I have a feeling it’s going to be a battle with me and my sister like you are going through with your sister. I do think you are doing the right thing, not putting her under more stress with unnecessary doctor visits, kitty pets, and little treats. I just had this conversation with my mom last night actually. Making people happy in their last years is so much more important and appreciated. Good luck!

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    • It heartens me to hear that people are having these conversations with their loved ones. It makes it much easier to know you are doing what they would have wanted when the time comes. And it makes it easier to stand firm in the face of naysaying siblings. Thank you, lifeessence.

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  • I bet from experience …you sister is actually crumbling inside while she is making memorial day plans …denial is something avoiding pain…I love your side of these situations, if she could write as well as you….if she had 185 comments to justify her feelings….what would her song sound like??

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    • My sister is not one for introspection, so I don’t imagine she’d have a lot to say. I expect you are right about running away and denial. Although it doesn’t make my task any easier, I do understand her pain and fear. I think the hospice social worker has been of help to her.

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  • It is so good to read your heartfelt post. It is a dilemma that many of us will face — either as the “decider,” the “involved witness” (like your sister) or as the one for whom decisions are being made. Reading your post is a reminder of the importance of having conversations with loved ones before it seems necessary. The advances in medical care present us with too many options, knowing that just because something CAN be done, doesn’t mean that it SHOULD be done. Thank you for standing as a firm advocate for your mother’s wishes and best interest.
    I would encourage you to think gently of your sister. Many people mask fear and grief with a determination to do something, anything, to help them feel some control, so they can feel they are taking active steps to prevent their loss. Selfish, perhaps, but sometimes it’s the best they can do, and it doesn’t mean they’re not grieving as well. Go softly with your sister, acknowledge her pain, and remember that family is precious and requires lots of grace.

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    • To be certain, my sister is a doer, which is how she avoids her grief. She stops by my mother’s assisted living once or twice a week for short visits, wherein she rushes around my mother’s room, a flurry of activity. I wish she would stop and rest. Sit with her. Be with her. But she just can’t do it. She just can’t let herself feel her grief. I feel sorry for her. Our father taught her this. He taught me this as well. But I’ve spent years actively unlearning that lesson. Maybe eventually, she will too.

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  • The Decider | Here's to Your Health!

  • I just went through this VERY thing with my mom, minus the hip! In her case, it was a stroke. I was not originally the decider, mainly because I I live in a different state. I did, however, end up taking on that role and completed the home hospice care. It was a lot of work, and a lot of stress as it was hard for family to accept the decisions I made. Which were basically what she wanted. Glad you are standing firm in your decisions, and doing what you feel is best, in spite of the challenges with family. Oftentimes doing the right thing, is the hardest thing to do!

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    • Wow, you are amazing taking care of your mom at home. I often think about moving mom out of assisted living and in with me. But with the Alzheimer’s the move would be hard on her, so she stays put and I do a five-hour round-trip drive to spend time with her every Saturday. Good for you for doing what your mother wanted and navigating family to make it happen!

      Liked by 1 person

      • I did it only for the 20 days it took her to pass on. My stepfather took fabulous care for her for the previous 2-3 years, during which she suffered many strokes and was non weight bearing. The last one took everything from her. Home Hospice was the hardest thing I’ve ever done, and probably the most meaningful in my life. I thought home hospice meant a nurse was there 24 hours , but it didn’t. The hardest part was not being able to feed her, and family having a hard time dealing with that. I wasn’t alone, but I did the hardest parts (giving the morphine and carrying the emotional toll) because family had a hard time letting go. For me, it was the greatest gift I could give her. There was no quality of life left, and I honored her wishes. I was in the room when she finally passed. I’d never seen any one die before. I hope I never have to be that strong again.

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        • Twenty days is a long time. My father was in inpatient hospice for the last week of his life. There was a nurse down the hall 24 hours, and I stayed with my dad, sleeping on the sofa in his room. My mother had a terrible time when dad stopped eating. There was lots of talk of a feeding tube, but in the end, mom realized it would have been for her, and dad would not have wanted that. I agree with you completely that it is the greatest gift, and the most difficult. And the most meaningful. Like you, I was with my father, holding his hand when he took his last breaths. It changes you utterly. I’m certain that is where I found the strength to be my mother’s advocate. I too hope you don’t have to use that strength again. But you have it in you. And that is wonderful.

          Liked by 1 person

  • I just lost my grandmother in May. She was 85 and sassy right up until her last day. The last time I saw her, a few hours before she died, she cussed me because I touched her with cold hands. She never had a feeding tube. She was on oxygen but never on life support. Until the last week she was able to tell us if she liked what she was eating or if she felt uncomfortable. She and my mother had a falling out just before she died. They had several “spats” over the years. Their relationship was strained. My mom is a nurse and was the only one in the family who would fully understand everything the doctors were telling us or where this or that ache or pain might be coming from. We have always depended on her expertise when it comes to medical decisions for everyone in the family. She was ultimately the one to make the decision to pull the plug when my aunt wouldn’t wake up following a cardiac bypass. My mom and I didn’t talk much after the falling out. I continued to see Grandma regularly and spent a LOT of time with my aunt and cousins. My sister NEVER visited the hospital. My mom basically refused to speak to me and never came back to the hospital, except once we knew Grandma was dying for sure. I thought my mom might cut me out of her life when I chose to spend Mothers Day with Grandma at the hospital. But you know what? She got over it, and my sister always needs a babysitter so I knew she would speak to me the next time Mom couldn’t keep my nephew. People get pissy about really ignorant shit because the stress of these things just naturally causes people to behave poorly. They will get over it. You keep doing what you think is best. It’s your job to make these decisions, and the weight of it might never leave you, even after your mother is gone. It is not easy to do this kind of thing and those who are not weighted with that responsibility should be thankful they aren’t carrying your burden. When a person is over 80 and has no hope of improving the end result, perhaps only prolonging the inevitable being their only bet, they don’t care how anything makes others feel. They want to be comforted, surrounded by the familiar, and to enjoy what little time they have left with the people they love. Anyone who doesn’t understand that should not bother being involved because they will undoubtedly ruin it for the person they are supposedly trying to help.

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    • Happy, you get it! How wonderful you stood by your grandmother as she prepared to leave this earth. You have written beautifully about what is important at end of life and keeping the focus on the needs of the dying, which is the most important. The living will still be here, and will have time to get over it. I would feel worse not doing what my mother wants in an attempt to coddle my sister. Mom has spent her life doing for everyone else. Now is her time.

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      • My mom works in a nursing home. She, of all people, should understand how important it is for those preparing to pass to maintain their dignity and comfort as much as possible. She has always spent more time worrying about her patients and her work than she has her own family. I thought she would be as devoted (or more) to her own mother when the time came and she wasn’t. My aunt, cousins, and I did the best we could to make sure Grandma passed peacefully. It wasn’t easy with the rest of the family behaving like selfish jerks. I’ll be thinking about you, Unconfirmed. I hope you and your mother both find the peace you need despite the struggles you face.

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        • There is nothing like death, to bring out the selfish jerk in people. That could have been me, but for some reason, it’s brought out the opposite. Full disclosure: I used to be a selfish jerk. Thank you, Happy.

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  • Nice read, I couldn’t imagine what it’s like being in your situation but you are managing it selflessly and that’s admirable considering its your family.

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  • I love your decision to make your mom comfortable in her final years. I wish I could have done that for mine. God bless you and your sister will understand eventually. Don’t worry about that.

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  • I like everything about your post, it shows true understanding of end of life care. The only comment I have is about the behavior of the nurse, the AL nurse should not have made an assessment siding with you to reinforce the decision to not follow the medical advice, it was beyond her reach. Truth is regarding mobile X rays, they are far more inaccurate than in hospital ones, a medical doctor CAN get information in spite of non communicative patients, the chances of changes in the current management are a lot less likely if a physician can not physically see the patient. A mobile X ray does not replace a doctor’s visit and that is the information the nurse should have provided. I am sure you would have still chosen to do things this way and you are the decider and it is your choice, but a health care professional should be professional and objective when giving advice to patients and caregivers. In AL there is a fine line from friendly advise to professional and well the nurse’s advice was as a friend not as a healthcare professional.

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    • That’s interesting about the mobile x-rays being less accurate. You’re right, though; I would have made the same decision. The AL nurses are trying to minimize liability, first and foremost. Our private caregiver is giving me lots of insight about what goes on at the facility. It’s really not the place for anyone who is not cognizant enough to keep an eye on them and make sure they’re doing their jobs. I wish at this stage it wouldn’t be too hard on mom to move her.

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  • My mum always says nothing bad ever happened that something good came
    out of it ( that’s a translation ) but it does mean that something good will come out of it and certainly you can see from the comments already people are sharing with you and you are spreading some good through your words. Thank you

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    • Thank you. It’s so nice of you to say so. I’ve told my mom about the blog and that I’m writing about her. And how people are relating to our experience. She seemed to understand what I was telling her, and smiled a lot so I know she was pleased. I thanked her for turning me into a real writer.

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  • Yo, Elle, it’s been a while since you’ve posted and just want to say I’m thinking about you and hope all’s as ok as it can be during these rough times. Sending you soothing, peaceful vibes from afar,
    curvylou

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    • Lou! Happy to see you here. We are hanging in. I’ve been traveling to Houston every weekend to visit with mom, and have neglected my blog, among other things. Mom has been fully bedridden since the hip fracture, and her cognition continues to decline. But she seems comfortable and content. Which is enough. In between, I have been squeezing in some writing. I’m for real working on The Memoir! Going to hop over to yours….

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  • Checking in to see how you are doing. Reading a previous comment, you mentioned how your sister is “do-er” and that is how she handles her grief. Unfortunately, there is no guide in regard to grief. Generally, I cut people a lot of slack when it comes to handling their personal grief. You may want to tell her to slow down and not to be busy-busy. The busy-busy is just working your sister into a lather and will be harder for her to handle when the end comes. The lather part, I think, is fueling her upset with the entire situation, “why won’t you do such and such”, etc. And, it’s making it harder for you to rationalize with her.

    It is important for you to stay well also. Though you’re holding the weight of world, do your best to stay well. You have the good, caring mind and that’s why you were chosen to be the decider. And, also find time to smile and maybe laugh. Okay?!

    Purrs to your kitties. 🙂

    David

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    • Thanks for this encouragement, David. Mom died on September 15. I’m beginning to stir and gather my thoughts for an update. The “damn cat” is now Cat #5. Ella’s Home for Wayward Cats is officially full.

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      • So sorry on your mom’s passing. It takes awhile to adjust. When my own mom passed earlier this year, I was much relieved she didn’t have to suffer more from the toll of aging exacts on a person.

        As for your “Home For Wayward Cats”, your cats are saying there’s no better place. But, don’t be surprised if one came around and say, “Ella.”

        Be well, my friend.

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    • Hi, Phil. Mom died on September 15. I am beginning to emerge from the fog of grief. Cat #5 (the “Damn Cat”) is insisting that I get back to writing so he can make his official Cat #5 debut on the blog. He’s a photogenic chap, so we’ll be doing a photo shoot within the next few days. He seems to be doing well despite the loss of his mama, and has become great pals with Lucy (Cat #4).

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  • The Decider – Wag 'n Bietjie

      • I’ve missed knowing what was going on but I can imagine, since my own mother went through a similar journey a year ago. We took care of her at her home with the wonderful support of Hospice during the last few weeks after numerous falls and fractures. Such a relief to know she is in a better, pain-free place.

        Liked by 1 person

  • I enjoy your blog and have missed reading your posts. Just wanted to stop by and say you and your Mom are in my thoughts.

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    • Hi, Donna. Thank you for stopping in. I am beginning to stir and expect to post an update soon. Mom died September 15. It was a long road, but despite the sorrow, there was much joy along the way. And lucky for me, I now have the “Damn Cat” sleeping next to me at night.

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  • Dear Elle, knew somethin’ must be up given the long silence. Have been thinking of you, and wishing you much of everything good and peaceful. What a time you have had, these past few years.

    Liked by 1 person

  • Cat Number Five | Unconfirmed Bachelorette

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