Christmas has been held and had, full to the brim of my favorite humans. I hope, if you celebrate, yours was good. And that if Christmas is not your holiday, you enjoyed the empty streets left as many of us burrowed into houses full of wrapping paper.
My task for the day is getting my mother out of the hospital. It’s an odd ongoing process to care for an elderly person, particularly one with Alzheimers. Surgery sets my mom so far back it’s not worth it, even more routine hospital stays exact a toll on her abilities to think and regulate her emotions.
The American medical system, however, treats the average patient. There’s nothing offered between hospice, i.e. palliative care only, and full-on, i.e. x-rays and IV antibiotics – my mom needs an in-between care system. I try to organize it for her as best I can.
I’m not angry, or grieving, although I have been both before in my mother’s care. Just trying as calmly as possible to encourage everyone to treat Mom as who she is. And get her into her own bed.
I don’t mean to go for the easy tearjerker here. Sentiment abounds. But on her good days Mom still greets us, “Hello darling!” The words that follow might approach gibberish. So we hold on to what we know to be true, both in our thoughts and in our feelings.
Have a good weekend.
63 Responses
Not only does the hospital system treat the “average” patient, rather than the specific patient, but most of the hospital system completely ignores the importance of rest and calm for physical healing, which I think is bizarre – how exactly is someone’s body supposed to do its job and heal up as fast as possible when beeping and lights persist all night long?
There are various home visiting medical services, but it’s a strange, patchy network that varies depending on where you are in the country and what you’re deemed eligible for, and I have no idea how they interact with nursing homes. It’s all very frustrating.
Have you read God’s Hotel, by Victoria Sweet? It might just be more aggravating, as the model of care described in part of the book has been dismantled. But it’s an interesting read.
@KC, Thanks for the recommendation. And the patchy network is so true, and eligibility, and the licensing of residential facilities, and on and on. Thank you also for the support, I appreciate it.
@KC,
Yes! God’s Hotel by Victoria Sweet is an excellent book (one of my faves). Her newest, Slow Medicine, is good too, but more of a memoir.
I am sure you’re right re the inadequacy of your mother’s care and wonder: what would that “in between” level of treatment look like for her?
@Naomi, I wish that the nurses in her residence could do suturing and IV antibiotics, so that the only people who went to the hospital would be those who could actually sustain a surgery and the subsequent recovery. I really don’t understand the difference between “skilled nursing” and what they have at Mom’s place, the licensing seems odd and arbitrary, although I imagine it grew up to address certain needs.
What a remarkably succinct way to express so much. I admire you more than I can say, and I just hope your mother’s journey is painless for her.
@Theodore, Thank you. I appreciate your admiration – but I have to say, I can’t help taking care of my mother, having gone through those emergencies she’s imprinted on me. So I just do what I’m now compelled to do. And I too hope Mom isn’t suffering too much pain, because surely there is some.
I went through something very similar with my step-dad this past year; he passed in July. Being a caregiver, even on a “come and go” basis is arduous and draining. Take care of yourself as well as your mother.
@Cynthia Blaylock, Sorry you needed to do that. And I am now learning to try and take care of myself.
Thank you for sharing your thoughts about your mother. You have a wonderful writing style. Your experiences are very helpful to me and many others going through similar situations. I hope today goes smoothly for all of you.
@Kathy, Thank you very much. I do hope these posts help others – that makes the difficulties less difficult. xoxo.
I totally get it. Just left my father who is in a nursing home for dementia and pray he doesn’t need to go to the hospital. I’m would be difficult for all of us and I’m afraid he would lose what little he has now. I chalk it up to the stage of his life and the stage of mine!
@Anita Krondak, Sending best wishes to you and your father. It is a stage of life for all of us and it’s hard to get prepared.
OH GOD………….I”M with YOU IN SPIRIT.
LOVE THE GREETING!!!!!HAS SHE ALWAYS SAID THAT?
YOU are doing a GREAT JOB.
I wish YOU THE BEST for this NEXT YEAR AHEAD!
XX
@LA CONTESSA, She has always said that. Thank you for the good wishes, I hope your first Christmas without your mother was OK. <3
Thank you for another beautiful and profound post. I wish all the best for you and your family in the coming year.
@Leslie K, Thank you in turn for the kind words. I also wish you and yours the best.
I have a lot to say about the care given to elderly patients, but suffice it to say, some sort of in-between is surely needed. I’m a little surprised there’s no doctor on call for your mom’s residence, who could come and suture or order IV antibiotics. The hospital is always a setback for elderly patients, for so many reasons. Sorry you keep going through this, and your mom too.
@KSL, I have asked them about an on-call doctor. There was one originally, she didn’t take Medicare, we opted out. But we are continuing to try and set this up piece by piece. Thank you.
Thank you for your lovely and tender post. Interesting how caring for the ones we love is heart-filling and heart-rending simultaneously. We really need to talk more about the in-betweens and what maintains meaning and care in life.
@Mardel, Thank you very much. It does fill and break at once, I agree. We do need that discussion – and I sense it will be up to women of our age to sustain it. xoxo.
Lisa, I’m right there with you on the need for certain treatments to be available outside of the hospital setting. I care for my young adult daughter who suffers from a condition that often necessitates IV saline and the only place she can be administered it is the one place she hates to go. Hospital holds so many scary and painful memories for her, both physically and emotionally. She has been bullied by medical staff for “using up their precious time” and yet there is currently no alternative available. Surely developed nations like ours can do better than this! Thankfully our family members have us to advocate on their behalf; I cry for the sick and elderly people who are on their own.
@Sherrie, Oh how hard to see a daughter suffer through this. xoxo. The hospital seems to layer on so many painful memories, the experience there is so heightened. How awful of the hospital staff to say that to your child. Seems so wrong.
Hoping you get your Mom settled back and set up with the care she needs. I agree that there’s often a care gap between “palliative” and “intensive.” So many levels of need that require cobbled-together solutions.
Glad you had a lovely Christmas with your family. May 2018 heap more blessings upon you.
@Susan B, Thank you so much. It is exactly the different levels of need that must be managed. And here’s to a spectacular 2018 for you.
Lisa,
Here’s another good book for these end-of-life challenges. Part memoir, part journalism, all good info.
It’s a tough time, I know. I’m in it too. :)
https://www.amazon.com/Knocking-Heavens-Door-Better-Death/dp/1451641982
@Drew, Yes! I won it from your blog. Thank you, it was an excellent read. Everyone has such different experiences, I sense we lack an ombudsman, what would have been a product manager in my career, a synthesizer. The providers act with good will for the most part, but the system doesn’t serve them or us as well as it might:(.
My husband and I are are responsible for both of our elderly mothers (mine age 94, his age 91). His mother has dementia and my mother has frequent bouts of illness and has quite suddenly developed some cognitive issues. We are feeling quite daunted. I agree that there needs to be care that doesn’t include the hospital. Our medical system only has one track it seems.
Yes, and the one track seems to be to avoid malpractice suits. Very sad and not helpful to the patient or the medical caregivers…as I’m sure you are aware.
@Susan D., It can be very daunting. And often as soon as I start to feel some mastery, something I did not predict or expect happens to make me feel daunted again. One thing I suggest for your mom, have her tested for a UTI. These often affect cognitive function in the elderly. Who knew?
Lisa – the best Christmas present you can offer is to be an advocate for your Mom.
I hope you got her to Rehab where they’ll at least wash her hair and make sure she eats something.
@RoseAG, I brought her home. The doctors in the ER, once I spoke to them, were very supportive of our wishes and our goals for mom’s care. The people are mostly good. The system is unsupportive. And at this point I am caring for myself when I do this for Mom, as much as for her. Her comfort has become mine. You know how that goes when we care for someone vulnerable.
Some time in the past year or two, I was reading something about this where the author said this: We, as a country, do not handle that period between the beginning OT the end and hospice very well. With my In-laws and Dad in various points along this stage, I see that it is so true. Hugs to you!
@Deana, Thank you. Hugs back to you. It’s up to us to sort this out and find the right avenues to communicate to those who can affect change.
Ugh. Auto-correct did it agin. OT = of.
@Deana, Autocorrect is such a dork.
I will always remember ( until I get “there” myself) and feel gratitude for the way Aunt Nancy and Aunt Linda mothered me when I was a student at UCSC. Like “hello, darling!”, the heart remains true.
Thank you for sharing, then and now.
@Laura, You made me tear up. I didn’t really know Mom and Linda had done this for you. Thank you very much for telling me, all these little details are filling me up.
I’m so sorry to hear this-there are so many possibilities “between hospice and full-on”and they are not always connected with a lot of money!
With a better organisation , a lot more would be possible and more convenient for the patient and his/her family.
I was always so sad when my father had to go to the hospital to get iv medication or rehydration
All the best in 2018 and a lot of “Hello darling!” moments
She is so lucky to have you
Dottoressa
@dottoressa, Thank you. I figure Mom most wanted to teach us to do as good a job as we could. So if we’re doing it well, it’s because she taught us how. Seems only fair.
And yes, we don’t need more money for this, just better systems/organization.
So sorry that your Mom was moved out of the familiar to the unfamiliar. It does take such a toll. It should not be necessary to do this.
@Allison, It shouldn’t be. Let us hope we can let those who can effect change know what is required.
I hear the confidence and strength in your written words, and I am so glad that you are hearing the reality of both the “Hello darling”s as well as whatever follows. I’ve been there myself, and I know that achieving one’s own balance and resilience is the greatest gift to the person we love, and I feel that you are doing just that.
@marsha calhoun, Thank you. At least for now, in this instant, yes, I’m finding balance and resilience. Of sorts. I came down with a very bad cold after Mom’s recent ER visit, but, that could have simply been winter and contact with a 4-year old, rather than stress. I feel less panicked, and less furious, and that can’t but be good.
“So we hold on to what we know to be true, both in our thoughts and in our feelings” – perfect! I have my mum at home with me and hope that is how it will be until the end, but I know that things can change in an instant. Thanks for your writing.
@Laura, that her end is as peaceful and in line with her true self as is possible.
Inadequate words, Lisa but I am thinking and praying for mum and you. May the new year bring with it good health and stability for all.
SSG xxx
@Sydney Shop Girl, Not inadequate at all. xoxox. Thank you.
Elders do deteriorate in hospitals. During my father’s last stat I read about hospitals that are developing senior ERs that try to get their patients in and out as quickly as possible just doing the bare necessities so that patients can return to their homes/centers, etc. These seem like a wonderful idea. I second the thought that the best present you can give your mother is advocacy for her.
@Lynn, A senior/chronic illness support ER sounds to me, inexpert though I am, like a great idea. xox.
I am so sorry you are going through this. My late father had no cognitive impairment, but was physically very fragile for the last 6 years of his life. In Scotland we are extremely fortunate to have free personal care for the elderly in their own homes, and so my father was able to be at home supported by 4 care visits a day. A supplement of the state old age pension is also paid to people in these situations to meet the cost of having a home help to do cleaning, and for more expensive ready-made food delivered by commercial companies for the carers to heat up. It sounds perfect, but the demand is so great with an ageing population that there can be a long wait to be allocated carers, and people do languish in hospital while waiting to reach the top of the waiting list. A humane, well-funded healthcare system that can meet the needs of the population is the holy grail.
@Linda, It does sound like an amazing system, and, unsurprisingly, I imagine the costs are high and it’s therefore hard to expand. I am imagining cognitive integrity and mixed with physical frailty and I imagine it’s its own path with unique issues.
Supporting an elderly parent with dementia is challenging on so many levels. In New Zealand we either have purpose built dementia facilities or dementia facilities within our rest homes. They cope with minor medical events but when my mother had a fall I had to accompany her to hospital where I was left to sit with her for hours until she was attended to. She -agitated and confused, desperate to escape, and me anxiously trying to calm her and keep her in bed. I realised then that some staff didn’t understand dementia and were not equipped to give the one on one care frightened dementia patients often need in hospital. We as a family decided after that event that unless Mum was in pain or major discomfort we would avoid hospitals in future. We decided as a family that medical intervention be kept to a minimum and when it became clear a few months later that she was gradually deteriorating physically the Matron at the resthome together with the nursing staff supported our decision that on the basis she was pain free, not to call a doctor or ambulance when her time was near but to let her depart life gradually and peacefully and without medical intervention of any sort. I have absolutely no regrets about that and I know my intelligent, elegant and vibrant Mum would have totally agreed with the decision. It’s a balancing act and not all families would feel comfortable with our decision but that is how our story ended and it was right for our mother and our family.
@Linda, We have a similar situation, in that Mom’s at a place that specializes in dementia care. They do a spectacular job in that – the caregiver ratio to resident is super high, and she is genuinely loved.
But these places are subject to licenses, so they can’t do “skilled” nursing services like IVs or suturing. Here in California, if they don’t call the ambulance if Mom’s health problem appears to be life-threatening, unless she is formally on hospice, as I understand it they can get sued. I can refuse the ambulance, but I have to do it right away, so middle of the night has been rocky. Still working to make sure Mom gets the emergency services that make her life better, and refuses the ones that would make it worse, without putting her at risk. Not exactly easy.
Wishing you an easy transition of mom back to her known home. Personally, I’m so grateful for your honest depiction of your situation, and all the helpful and supportive comments on the thread. My husband and I have four living parents living in facilities near us, ranging from 86 to 96. We are so lucky to have them nearby and in circumstances where we are not their primary caregivers, but still there is so much to be done for them, and so much worried anticipation about what will come next. It’s almost all consuming, and we have to remind ourselves to enjoy everything that is today.
@lisa, Thanks – I feel that honesty is the only way this can get better.. She is home safe. I cannot imagine having four parents to care for.
Lost my elderly mama last month – she’d been spared the Alzheimers that took her mother and two sisters. There desperately needs to be better medical philosophy for something “in-between” for the elderly. She was dead 3 weeks after they put her onto hospice care, and it’s agony knowing that she might have lived longer with actual reasonable interventions thoughtfully applied – but what was the only other option pushed? Chemotherapy, surgeries, the rest of her life spent wretched in hospital rather than a comfortable home setting?
As adult children and sibling groups in this position, it really does feel something like the decisions made in raising our own children – forced to make the best choices we can and then to accept how it plays out for these people so dear to us. If I didn’t have a belief system that offers transcendence I couldn’t do this life.
@E, I am so sorry the system didn’t let you feel that you’d helped your mom find the best possible end. I am sure you did find the best possible, but, the system doesn’t allow us a real best right now. It is like having children, very much so. xox.
My husband and I have cared for both our Mom’s at this stage in life and what I have come away with both times is how thankful we are to have been the ones caring for them. In hind sight it is a great blessing to know you stuck it out, loved them to the end and gave them the care they deserved. Not all our family members can say that and I wonder how they cope with their lack of concern in their Mom’s last days. For many years to come you will be so thankful for the love you are giveing her now. God bless you.
@Sue, Yes, I have found this experience to give me as much as is takes away, now. In the first year that was not true. I feel very lucky to have had the opportunity to get to this place. And grace be with you both for your care of your mothers.
Sadly, the system is not set up to meet the needs of the whole person. Navigating the system as family member/main contact is probably one of the hardest roles. Fortunately, you know the system and have the skill to manage it in the best interest of your Mom. That said, it does not make things any easier. My thoughts are with you.
Thank you very much. I was wholly unprepared in the first year. School of hard knocks. <3
Hi Lisa, I am behind in reading your blogs….I had a very similar experience with both of my folks. You are so right; there needs to be comfort care and a doctor who comes and takes care of infections, etc, so they do not fall ill to disease that can be treated. It would be much cheaper for Medicare to offer this level of care than constantly taking patients to the hospital. I also just want to suggest checking out Hospice care before you need it. It is a daunting task to do in an emergency. Patients can be on hospice for a year, and can actually come off it and it keeps the facility from calling 911 all the time. It gives you time to take a patient to the doctor if needed or bring a doctor in. I totally agree that skilled nursing is very confusing. They really don’t do much medical care at all!!
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