Sorry for the delay, it’s been a travel day

Sorry for the delay in posting, I was flying back to Chicago today to see my family for a week before flying to France to do my annual house-sitting for Chris and his wife while they take their big yearly vacation (the French get a lot of vacation time, but they’re pretty much required to take a big chunk of it in August).

It’s been a strange trip already, after only three hours. My parents are both around 84/85, and dad recently had surgery for oral cancer, and while the surgery went well, a few weeks later some kind of dementia, or delirium (apparently, there are multiple categories) set in. We don’t know if it was the anesthesia, the surgery itself, some medicine post-surgery (he took a Benadryl shortly before it set in), the chemo, or what. But it’s been really bad, and of course with the radiation, he doesn’t want to eat or drink, so has lost a lot of weight. And now has pretty much stopped eating and drinking, so we’re getting a feeding tube installed, and are already giving him water via a daily IV drip.

Sasha, god bless her, is blissfully unaware. (This is her sitting at O'Hare waiting for my to pick us up.)

Sasha, god bless her, is blissfully unaware. (This is her sitting at O’Hare waiting for my to pick us up.)

I’ve done a lot of googling on this, and apparently there are some serious risks when it comes to operating on the elderly – risks of this very thing happening.  You see report after report of them “not being quite right” after surgery.  And they don’t know if it’s the anesthesia, inflammation in the brain caused by the trauma of surgery, “chemo-brain” (a result of the chemo), a bad drug interaction, or what.

Dear God, I’ve never actually witnessed someone like this in person.  The only thing close was a friend who had AIDS and was dying. I was visiting him out west, and he kept telling me the same funny story over and over again.  He’d chuckle every time he got to the punch line.  The more he laughed, the more I felt my stomach tie up into a knot.  All you can do is put on a good face.

It’s pretty horrible, I really can’t find any other words to describe this. You don’t know what to do. They’re clearly unhappy, in pain, can’t speak well at all (after the surgery, without the prostheses you can’t understand 99% of what they say, but after the radiation they can’t use the prostheses until the mouth heals). Because you can’t understand them, you have no idea if they’re talking out of the delirium or whether they’re trying to have a real conversation. And, as I’d read could happen, his sleep and wake cycles have switched, so now he sleeps most of the day, but is awake much of the night, wandering the house, frail, mumbling.

My poor mom is exhausted. And we have no idea, the doctor has no idea, if he’s going to get over this, if this just temporary, or whether this is permanent.  And putting him a hospital or wherever isn’t a great option either – he’s always had a terrible fear of dying in a hospital, and is claustrophobic, and he’s just sane enough to know to say “no” to any move to a hospital.

It’s just horrible to watch.  I don’t know how my mom and sister have been handling this the past month.  They’ve been dealing with this every day for a month, and I’ve only been here 3 hours.

Anyway, that’s why I didn’t post when I got to Chicago. I’ll be posting lightly tomorrow, as is usual for the weekend, and hopefully will be blogging normally during the week.

I’m sure I’ll have more to write about this as it progresses. But as a single man, this scares the hell out of me – I have no spouse or kids to help if this ever happens to me when I get older.  And my dad has killer health insurance – having been a former auto executive, and being a vet.  And even then, the nurses are teaching my mom to give him the IV.  Seriously, my 84 year old mom? I told her we need to inquire about getting some help, even if we pay for it ourselves.  It’s amazing what even “great” insurance – the old kind of insurance people USED to have, that was pretty good (well, for some people at least) – it’s amazing what that kind of “great” insurance still does not cover.

My generation and younger is f’d when we get old.

I’ll be curious to inquire when I get to Europe as to how people, hospitals, insurance, families deal with these issues over there.

Off to bed, hopefully. Gnite.


Follow me on Twitter: @aravosis | @americablog | @americabloggay | Facebook | Google+. John Aravosis is the editor of AMERICAblog, which he founded in 2004. He has a joint law degree (JD) and masters in Foreign Service from Georgetown (1989); and worked in the US Senate, World Bank, Children's Defense Fund, and as a stringer for the Economist. Frequent TV pundit: O'Reilly Factor, Hardball, World News Tonight, Nightline & Reliable Sources. Bio, .

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  • hidflect

    I recently met an old family friend for the first time in 20 years and got a real shock. Dementia had set in and he was a shell of the man I remembered as a child. For just a moment his eyes focused and he turned to me with all seriousness to say, “Listen, getting old is no fun..” and then spaced out again. How long is enough? We’ve all had an enormous life compared to the other 99.9%. I want to go out gracefully.

  • http://adgitadiaries.com/ karmanot

    Isn’t it true, how care giving on this level transforms our lives and gives us a view of compassion that is down to earth and close to the heart. I once had a neighbor, who was by all accounts a rather traditional and good man. When his wife became ill and suffered dementia, he took such loving care of her and he became an enlightened caregiver. Not all men have that understanding, but mothers and wives do.

  • http://adgitadiaries.com/ karmanot

    John, see if the hospital has a ‘medical navigator.’ This is a relatively new field in CA at least, but a primary one for establishing a central communications clearing house for patients.

  • http://adgitadiaries.com/ karmanot

    “How does home health care work in this country? Some little outfit
    employes low class untrained unchecked random people to do the care, and
    being another unit of the free enterprise capitalistic system charges
    two or three times more than they pay their employees”

    That is complete Bullshit and most uninformed. IHSS (In Home services) in California is a world class model paradigm for in home care. It operates on State and Federal grants, involves nearly a million individuals, 500,000 in home patients who are disabled, elderly, critically ill. The system, which is strictly regulated and reviewed, allows the most vulnerable to stay at home rather than being shipped off to for profit storing units. The salaries are just above minimum wage, but the idea that such caregivers are low class, uneducated,untrained and potential thieves is bigoted and outrageous. FYI, I have two master’s degrees, a PhD, hospice and in-home training. Aside from the education, you will find my background is not unusual. The only part of your scree that rings true: “I don’t know.” Shame on you.

  • emjayay

    After reading through these comments, plus my own experience with my parents: There is no health care system in the US. It’s all a lot of free enterprise capitalistic units trying as hard as they can to make as much money as possible. In the sort of situation being discussed here the failures become obvious.
    Here’s John, and intelligent educated caring upper socioeconomic class kind of guy and he’s somewhat clueless as we all are in this kind of situation and having to suddenly search completely on his own for solutions. And here’s the medical establishment full of independent units all trying to clean up. Insurance executives and hospital administrators and even more so CEOs all taking home millions every year, catscan companies charging ten times what they do elsewhere, drug companies charging two or three or four times more than they get to everywhere else, millionaire medical specialists. And little money spent on taking care of people overall in diffucult situations.
    How does home health care work in this country? Some little outfit employes low class untrained random people to do the care, and being another unit of the free enterprise capitalistic system charge two or three times more than they pay their employees, because they can.
    Some advice spoken from experience: before letting anyone in your house unsupervised take away the checkbooks and cash and silverware and jewelry and take pictures of everything if you haven’t already, which is a good idea for insurance purposes anyway.
    A real healthcare system would have people whose job it is to advise and supervise and arrange for needed services. No one in a new and difficult medical situation should be looking around for a social worker or something somewhere. No one should have to depend on caring relatives they may or may not have, particularly in a society where they tend to disperse all over the country.
    Maybe comprehensive systems like Kaiser Permanente do better, I don’t know.

  • Badgerite

    Post-operative nutrition is really important to recovery. You could look into supplementing your dad’s diet with some herbal combinations and vitamins for nutritional support.

  • FunMe

    My Dad was in a nursing home, something we Latinos try to avoid, but due to his dementia, we had no choice. The angel taking care of him was my mother. She didn’t drive a car, but she took a bus to the facility almost every day to take care of him. If it wasn’t for her, my dad would not have received the top notch service at the facility. Plus my sister who lives in the same town made sure we monitored how the nursing was treating him. Without them, and of course my other sister and I out-of-state constantly calling and monitoring his services at the facility, he would have lived his last 2 years of life in a horrible place. I was blessed to be able to come home and have him come home and be with him in his last weeks of life. He went to heaven from my old bedroom with my mom, 2 sisters and I around him as he took his last breath. We were blesed to have witnessed such a beautiful send off to God. But again, the services my Dad received were good because we monitored every where he was.

  • FunMe

    Sending you prayers and positive energy for healing and comfort to our Dad and strength for your family. Big hug.

  • alphonsegaston

    God bless you and your parents.

  • http://AMERICAblog.com/ John Aravosis

    First it all has to be done hygenicaly, second you have To feed the water into the entire tube an work all the air bubbles out. I watched the nurse who was having a difficult time. My mom afterwards was like “forget it.” Then you have somewhat delirious man trying to walk around with an IV stand that’s so huge my mom, who has two nerve-deadened feet from her own chemo years ago, can bury keep dad from falling let alone the absurdly large IV stand getting in the way. I was therefore in charge if the IV stand while mom kept dad upright walking (he refused to sit down), while all 3 of us almost fell. I really want to m is how other countries do this.

  • emjayay

    In England, National Health used to have a visiting nurse going around and checking on people. Well at least on Eastenders.

  • emjayay

    One would have to assume it’s just plugging the tubing into the already installed needle part. Although I didn’t know about untrained 84 year old civilians doing it.

  • Kay Williams

    John, I’m so sorry you have to go through this. I watched my 75 yr. old Father go in for heart-valve replacement and he had that odd-post-surgery dementia, also. It took about two months to him coming as close to normal as I had seen him. A facility that he moved to from hospital was not a long-term care place, but known for helping people after a trama to learn how to live again. Bathroom, walking, talking, etc. rehab. Unfortunately he died after becoming septic.

    My best advice is to find someone knowledgeable that you and your family can consult with; as there seems to be so much medical information that isn’t passed onto the family of an ill-loved-one. Or that information is really confusing. Doctors talk fast, and medical staff sometimes aren’t helpful. Also look into a patient advocate to help sort out bills and to make sure medical staff can address your Father’s and your Family’s concerns. Take each day as it comes, and be good to yourself with spare time to rest. Caregiving is emotionally and physically hard.

    My prayers and thoughts are with you and your family. I hope the dementia clears and you see your Dad come back to himself again.

  • LizH

    John,

    I’m in Chicago. Happy to help you and family with anything. Just drop a note. My heart extends to you and family in your difficult times. I was a caregiver for my husband for 6 years, so I know what it is like to be tasked with medical procedures that are out of your league.

    Prayers are with you and family,

    LizH

  • samizdat

    John, you’re doing all that a good child of aging parents can do, especially when the doctors aren’t even certain of a timeline for recovery. Your parents are fortunate to have you there for them. My own mom died from ALS ( amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) in January of 2007, but in the year preceding, my two brothers and my sister and I (with my sister doing a lot of the yeoman’s work, such as transporting her to friends’ houses and the various medical facilities) were there as often as we could be, in addition to her insurance and her amazingly large savings helping to pay for the in-home nurses and caregivers. We would take turns sleeping overnight at her house (where she eventually succumbed to the disease), aiding middle-of-the-night bathroom visits (she had largely lost significant control of her limbs, in addition to losing the ability to speak), and any other duties we needed to perform. Including feeding her through a tube in the stomach.

    John, you do what you can, and you do what you may, so don’t let that little voice in the back of your head whispering “am I doing enough?” haunt you. You’re only a single person, so thinking that some superhuman effort on your part is the only “right” or possible thing to do is hugely self-defeating.

    If I may, if others downthread haven’t already done so, may I offer some advice?

    1. Don’t be shy about informing family and friends in Chicago about your dad’s illness and complicated recovery. If they remotely resemble human beings in any way, they WILL help, don’t doubt that for a minute. I was surprised by how many of my mom’s friends and fellow parishioners (RC) came to our aid, when we needed it, and even when we didn’t. As well, when I had cancer, I told my wife not to tell my family and friends about it (yeah, I’m just that stupid). Of course, she did anyway, and even though they weren’t often called upon to help, as I wasn’t incapacitated in any way (until after the surgery), they came to our–well, my wife’s–aid whenever it was requested. (And even sometimes when it wasn’t)

    2. Seek out every last piece of information about what is happening to your father as possible. It may not necessarily aid him or you directly, but it could give you a little bit of peace of mind. And it may help you and your mom make the best decisions for your father, if he isn’t capable of doing so himself.

    3. Do enlist a home-health worker and a nurse to come in daily if possible, and as often as possible if not. Caring for a loved-one with major medical issues is no easy task, psychologically and physically, and having as many professionals on call or present will help your mom and you greatly. I don’t know what my sibs and I would have done if the professionals who were there (granted, they were paid to be, but…) weren’t so dedicated to their jobs. (there were one or two “duds”, so to speak, but by and large, these people are a boon to society; I really can’t say enough of the humanity, patience and integrity of palliative and hospice workers. I’m an atheist, but if any group deserved sainthood en masse, it would be these folks)

    4. As for feeding and hydration, we used the feeding tube (in my mom’s stomach) for both nutrition and hydration. I’m not certain of your father’s condition, and his requirements, but this would certainly allow anyone–especially your poor mom–an easier way in which to keep your dad fed properly. We also used the feeding tube to administer her meds by crushing them or what have you, and sending it in that way.

    5. I’m think I may be all out of advice, but one more thing: try to get some rest.

    My sympathies, John, to you and your family. s

  • Mike_in_the_Tundra

    John, the times and services may well be determined by an occupational therapist. The therapist will evaluate your father through a series of “talks” and “activities.”

    You may need to consider adult day care after your father’s medical needs lessen. The adult day care will do activities to improve cognitive function, but it will mostly be for your mom. Caregivers burn out without respite. Many adult day cares have support group for caregivers. If not, the social workers can help find such a group. It will be a safe place for caregivers to share their feelings. When my husband was terribly sick, the group gave me a place to express that despite loving the man, there was a part of me that felt anger, because he had the nerve to get sick. Those feelings were stupid, but I needed to express them. The members can also give other members helpful suggestions.

  • Bomer

    The first time the nurse came twice a day for chemo after the transplant surgery. The second was once a week and all the nurse did was take her vitals.

  • Bill_Perdue

    It doesn’t get much worse than dealing with terrible effects of age on our parents. You have my sympathies.

  • http://adgitadiaries.com/ karmanot

    They certainly are among the best human beings on the planet.

  • http://adgitadiaries.com/ karmanot

    Hospice folks are the angels on this earth.

  • http://AMERICAblog.com/ John Aravosis

    Do you know how many days a week they came by, for how long each visit, and what kind of things they did while there?

  • sdguppy

    John, my thoughts are with you and your family. When my mom got brain cancer 14 years ago my sister pretty much gave up her life to move in with her until the very end, when she wasn’t sleeping more than 10 minutes at a time and we had to put her into a nursing home. I’m a hospice nurse and many people hire personal caregivers if they can afford it and those that can’t often end up with few choices. I hope that he is able to clear and get back to his old self a bit.

  • ezpz

    Hospice may be premature because they do palliative care only. They don’t do any life saving procedures, e.g. feeding tubes, IV, etc.
    They are truly wonderful, though, when indicated. They keep the patient as comfortable as possible, as well as taking care of their personal hygiene and cleanliness. Last, but certainly not least, they are like angels in the ‘transitional’ process.

  • shanob

    The service that is hard to get and should not be is hospice. You have to have a diagnosis of 6 months or less……. it is the most wonderful service and helps the family cope as well.

  • shanob

    Yes, and sometimes it can be something as simple as a prescription for a home injection that will qualify you for home care. Some doctors are better than others at knowing what to do……

  • HelenRainier

    I do have roommates now but even at that we’re all about the same age. I didn’t think much about it really until I had to have a carotid endarterectomy. That hit me like a ton of bricks. Prior to that surgery I was functioning with one completely blocked carotid and one that was 50% blocked. Whenever I experience head pain now I inwardly panic wondering if my head is going to explode. Then I developed macular degeneration in my left eye due to decreased blood/oxygen flow. Now I have also been diagnosed with COPD. Some times I think I’m starting to “fall” apart so I am thankful for each day when I do wake up and can breathe well enough to get around, go out to run errands. I have curtailed my outside physical activities quite a bit though.

  • http://AMERICAblog.com/ John Aravosis

    We just got a lot of great advice from someone who opened our eyes to some of the in home services that dad’s insurance might even pay for (the insurance refuses to even tell us what kind of at-home services they’d pay for).

  • Steve_in_RI

    So sorry to hear about your dad and your family situation. My family had a similar situation with my father and progressive Alzheimer’s over a number of years. My mom and sister did what they could until it was beyond what they could do. Similar ages. My heart goes out to you all.

  • http://adgitadiaries.com/ karmanot

    That so true Jim, and boy ever do see the quality of heart and love, or not.

  • http://adgitadiaries.com/ karmanot

    That’s the story here too. I’ve had in in-home nurse sent by GP from the local clinic. It was covered by medicare.

  • Jim

    Good luck John! My father went through an alcohol poisoning type set back a few years ago, but recovered nicely. But now he’s 89 and the hearing is nearly gone, the mind is starting to go, and he’s getting more feeble. My Mom is usually horizontal on the couch due to chronic back pain; she’s 90. Getting old isn’t for sissies, or their families!

  • http://adgitadiaries.com/ karmanot

    “My wife does not fear death, she fears pain” That’s it exactly. It’s not surprising how many of us discuss this very concept quietly among ourselves for exactly the reasons revealed in that horrific story. Pain management and the services of a Medical Negotiator are essential.

  • http://adgitadiaries.com/ karmanot

    “Your presence communicates” and means so much.

  • http://adgitadiaries.com/ karmanot

    You nailed it CC—-someone has to be there as an advocate these days!

  • http://adgitadiaries.com/ karmanot

    In the early days of HIV in home nurses were rare, so we often had to help with the IV’s, but only learning to flush them. I hope that’s meant, otherwise a hospital that expects a civilian to insert an IV is standing on liable criminal ground.

  • Bomer

    To keep a long story short the two times my grandmother had a home care nurse (once after her liver transplant and once after they found out she had a leaky heart valve) it was covered fully by Medicare (she has both Medicare and Blue Cross/Blue Shield).

  • Mike_in_the_Tundra

    We were able to get home health care for my husband. It was covered in total by Medicare. I wish I could remember more about it. Our GP made the arrangements through the local hospital. A nurse came out once a week, an aide came twice a week, and we also had visits by a social worker and an occupational therapist. I believe it was possible to get the aide more often than twice a week, but my husband felt his privacy was being violated. The social worker was more for me, but she did find other resources for me.

  • http://adgitadiaries.com/ karmanot

    Good support systems are essential. And please take help when it is offered.

  • http://adgitadiaries.com/ karmanot

    Medicare should cover most and the private insurance act as supplemental?

  • http://adgitadiaries.com/ karmanot

    “the key is to take care of yourself (and each of your family member need to do this” Marlin so so right about this.

  • http://adgitadiaries.com/ karmanot

    “I have some very deep-seated fears about aging and wondering what I will do.” Don’t be afraid. That is a natural concern and you would be surprised how we of a certain age find each other in small communities and keep an eye out. Two years ago I was walking the Snoma County Trail at dawn everyday for years. Then I got a bug bite and went down hill fast. These days I am so weak I can hardly troll whack on Americablog lol. It has been amazing to see the neighborhood come forward bringing visits, cheer, and food. When one of them goes out for a time, we do the same. Building survival communities is a good idea, Someone will be there for you. You just never know the goodness in someone until a crises unfolds.

  • http://adgitadiaries.com/ karmanot

    Oh John,our hearts go out to you. Even though nearly twenty years of care giving have gone by, every time something like this unfolds it’s as if for the first time. Every time is unique, every person unique—particularly parents, That you are there is a full blessing. At some point you may want to consider (IHSS) ( In Home services ). If there is any way we can help, just let us know.—many of us are close to your parents age. Peace

  • http://AMERICAblog.com/ John Aravosis

    Now the nurse is trying to teach 84 year old mom how to get the bubbles out of the IV line. It’s not easy. Even nurse is having a hard time. This is truly ridiculous.

  • HelenRainier

    John, I’m so sorry to hear this and will send out positive thoughts for you and your family. It is very difficult to deal with this experience. I lost both my father and mother within 1 year of each other down to the day. Even though it’s now been over 10 years ago I still haven’t recovered emotionally and/or mentally from the void this has left in my life. Like you, I am not married and never had kids and I have some very deep-seated fears about aging and wondering what I will do. It is natural to feel guilty when you live so far away and aren’t really in a position to help out. I don’t often say/do this but I will pray for you and your family. Will Sasha be staying in Chicago while you’re in Paris? She could be a needed blessing for your family while you’re away. Namaste!

  • http://AMERICAblog.com/ John Aravosis

    And insurance paid?

  • http://AMERICAblog.com/ John Aravosis

    I don’t feel guilty, more creeped out than anything. And feel awful for my mom especially.

  • http://www.rebeccamorn.com/mind BeccaM

    My heart goes out to you, John.

    And yes — anesthesia can have effects on the brain that last for weeks, until the body clears it out.

    I’m with Marlin: Don’t feel guilty. You’re there, you’re helping.

  • shanob

    Also check with doctors about prescribing home health care. I was able to get a nurse twice weekly (to help with bathing, etc) because the doctor prescribed a B-12 shot. You have to find someone who knows how to work the system to get some help at home. It is possible.

  • citizen_spot

    Truly sorry to hear about your dad’s condition. Best wishes.

  • http://AMERICAblog.com/ John Aravosis

    Yep, going to check back with the social worker and county folks.

  • http://AMERICAblog.com/ John Aravosis

    Yeah, I’m definitely going to inquire about this.

  • GaiusPublius

    Enormous sympathy for this, John. Terrible news. Do stay strong. And do write about the comparable situation in Europe. Many of us are eager for the information.

    GP

  • Marlin Earl Bynum

    John,

    First, don’t fall into the trap of feeling guilty about your own situation in this. I have seen far too many people get into a guilt trap of “Why am I not doing more?” or “Am I doing enough?” While some sacrifices might be needed, we have to balance reality with emotional obligations to others.

    Second, This is normal, but extemly difficult on you and yor family. In my previous life (As a Christian minister, before I came out as gay), I watched many a family go through this. This is a horrible thing. I even when thorugh it myself as I watched my grandmother (who lived with me and/or under my care for the last two years of her life) enter dementia and Alzheimers.

    Third, the key is to take care of yourself (and each of your family memember need to do this i.e. your mother and siblings). You won’t be able to care for another if you aren’t in good health — mentally, physcially, and emotionally — yourself.

    Fourth, I totally understand your fears. Try being a gay man in his forties, whose whole world was previously tied up in felationships (church members etc.), who came out and watched (knowing it would happen) the loss of all of those supposed friendships. Building relationships in your forties is not the easiest thing in the world. Without a false community (i.e. church) it ain’t easy. I have witnessed a fellow gay man who is elderly going through the same thing. I have tired to do a few things but by experience had taught me to have my limits.

    Fifth, Your Idea of getting help to come in is a great one. It will help wiht many of the above thoughts and ideas. It is very proactive and helps everyone take care of themselves and the person in need. I don’t know what level (i.e. his needs) your father is at but there are several types of care takers that can be brought in at different levels. While he is not probably ready for hospice care, they can sometimes help. Also, call up the local social work office, they will have resources both human and financial that might help.

    Life is a difficult process and while the wonders of modern medicine have extended life for us it sadly has given us no answer as to what to do with this extra life (about 40 years) While the first thirty or so can be okay — the last few can be terrible on the person and those who live him/her.

    I will hope for the best for you. Like all advice please feel free to use/ignor whatever will help. Being human can be the most difficult when we know the most as a species and yet feel the greatest helpslessness in the face of a situation.

    Later,

    Marlin

  • ezpz

    All the best wishes to you.

  • emjayay

    I just snooped around all your photos and videos. Thanks for posting them. Germany is such a civilized country. Rather hard to explain certain little problems in their history.

  • Indigo

    It’s tough. Best wishes as the process continues. My only suggestion at the practical level is to check with the social worker at the hospital. It’s possible that the county has social services that can assist your family. It’s also possible that a cancer support group in the area has assistance available and even recommendations for care-helpers to come in for a few hours every other day or so. Prayer can be helpful, if only as an atttitude placebo, and you should see to it that the priest stops by for a visit. That’s very important!

  • annetteboardman

    I live four hours’ drive from my parents. My mom has never used the computer, so I try to write a letter or a postcard to her every day so she knows I am still there. And I care. That is what is keeping the post office operating these days, I guess.

  • annetteboardman

    John — I know exactly what you are going through. My Mom insisted on having knee replacement surgery (she was already starting to exhibit signs of dementia) and the dementia came on full strength afterwards. After a month or so she was much much better, and then she went home and lived at home for almost five years more, but then she insisted on getting the other one replaced, and after that (her GP recommended against it because of the response she had the last time). It has been worse. She is now 84 and hasn’t lived at home for almost two years. She is cheerful (the knee is fine!) but it is difficult to follow her conversation — she knows she is saying something and it is clear she is, but you can’t follow it. On the other hand, my Dad, at 87, came out of surgery two years ago just fine. He still drives and lives alone — he is lonely without my Mom but he is okay. I fervently hope I have inherited his genes. I was diagnosed with cancer and have had surgery and will have radiation in a few weeks. It is difficult to live alone. As I have passed 50 it has gotten quite real that I am alone. And I live in a rural town without delivery of groceries, etc. Thank heavens for friends who check in on you, and the pets who keep me company. I don’t know when I want to move into a retirement community, but I think that will eventually be my solution. I am hoping that my retirement (which is one of the few still defined-benefit state plans left standing) doesn’t get looted out by my state. And that there is single payer by the time I retire in 20 years.

  • Indigo

    My dog outlived me but I provided for her care in my will. Now I have to get a new will.

  • possibilityexists

    As a nurse in Canada, I totally understand what you are dealing with with your father. Caregiver burnout is real and my heart goes out to you and your family. Oral cancer is a tough one. For single people who are aging, it’s prudent to have a circle of close friends who purposely decide to look out for and care for each other like family, and to have a living will so that your care decisions are known by all who need to know.

  • Indigo

    Both of my parents passed from forms of cancer and in both cases, no matter how carefully, the family monitored the procedures, the basic brutality of American health care was fully evident, including the medical doctors wringing their hands and claiming there’s nothing more to do. Death in America. It’s purposefully fundamentalist, Libertarian, Wild West torture.

  • Hue-Man

    What is truly criminal is the fact that U.S. GOVERNMENTS spend more on health care per capita than almost every other country in the world. Here’s a link from last year which shows these amounts: USA $4,437 per person, Germany $3,339, France $3,130, Canada $3,104, UK $2,919. http://www.guardian.co.uk/news/datablog/2012/jun/30/healthcare-spending-world-country

    Unlike other countries which cover 100% of the population, generally out of general tax revenues and at low/no cost to the patient, the U.S. covers only the elderly, the military, the governing class, and the indigent. Spend more, cover fewer people, poor care, and millions of citizens exposed to personal bankruptcy due to medical bills. What’s the definition of “insanity”?

  • 2patricius2

    John, I know the kinds of things you are going through, having gone through it with parents and my oldest brother and some friends. I wish you well. Make sure you have a good support system.

  • SkippyFlipjack

    My dad had something similar two years ago, around the same age, went in for neck surgery, was OK for a couple days then was like he’d dropped into full dementia. Turned out to be a pain medication issue that was a combination of factors including too much of one thing, not enough of another combined with him taking some valium he brought from home. Doctors experimented with different pain meds and in a few days he was pretty much back to normal. It was really scary, it was like he’d aged fifteen years overnight.

  • Constant Comment

    My father had dementia due to alcoholism (another story) for the last several months of his life. Even though he was in a nice and expensive place that cares for people in his position, it was still necessary that I and my three siblings had to be constant advocates. I have no idea what elderly people do if their children are out of state or if they have no family members. And I worry about myself as a single woman in her 60s who, if I’m lucky, will have a heart attack and go quickly instead of having to rely on nieces, nephews and my younger siblings (even though they all are caring and nurturing). Your mom and sister will most assuredly need help with his care; best wishes to your dad and your entire family.

  • Dave of the Jungle

    Dude, I feel your pain. My Dad had a radical nephrectomy last year at age 85. He was beyond communicating for months. Then, he fell and injured himself frequently. It was 6 months before I was sure that he and I could participate in the same conversation.

    Your presence communicates. I know it doesn’t seem like enough but it’s important. Be there heart to heart. It’s metaphysical therapy.

  • Henry Owen

    As a single parent of 5 furry kids, I know what you mean. My only fear is how they will do when I’m gone.

  • ezpz

    It’s painful enough to just see our parents age, but to watch them go through something like this is truly agonizing. Stay strong, and if possible, optimistic. Your Dad may well come out of this okay. Hoping he makes a full recovery.

  • Mike_in_the_Tundra

    Let me start by saying that you have my sympathy. I visit with several dementia residents in a local care center. Try to avoid hospitalization. Just being in a hospital can bring on dementia symptoms in elderly patients. It stands to reason that hospitalization could make already present symptoms worse. Your dad has been through a lot. it would be a lot for a much younger person. You need to be careful that your sister and mother aren’t totally worn out by all this. That’s much easier said than done.

    You need to see if your father’s doctor will certify that he requires hospice. Hospice will get a lot of in home help. The doctor may say that your father does not meet the criteria for hospice, because hospice is usually reserved for someone who has a life expectancy of less than six months. Your a lawyer, convince the doctor otherwise.

  • cole3244

    my mom had alzheimers for 3 years in my care me & 3 years in a nursing home, she died at 90, the european countries have it right and take care of the elderly, socialism rocks.

    keep your chin up, be safe, and use your support system as much as possible.

  • http://thetimchannel.wordpress.com/ The Tim Channel

    I know way more about the German health care system than I’d ever have cared to know since my wife was diagnosed with terminal lung cancer here late last year. She flew home to the US to get a course of treatment in November and an estimate for services. The estimate came in at $440,000. She took the recommended course of treatment to her doctor here in Germany (she is covered under German healthcare) and was placed in the Hemer Lung Clinic for treatment. She received the exact same treatment regime outlined in her American estimate. The only cost was for me staying in the guest quarters onsite at the hospital (35 euro/day). The treatments failed to kill her cancer though they nearly killed her. The hospital was top notch. Can’t say enough good things about the quality of services or the facility in which she received it. Of course the doctors want to continue the chemo/radiation. My wife is having NONE OF IT. She’s done with it. She is at peace with her condition and has made arrangement in Holland for euthanasia when the pain becomes too much to bear. She is again fortunate to be receiving pain therapy in a country that isn’t at war with their pain doctors (by trying to put them in jail for overprescribing pain meds to terminal patients e.g.). She had a scan done Friday. A couple of her tumors have shrunk, but the tumor embedded between her back muscles and spine has not subsided. It has actually split the fourth vertebra in her back. She had to sign a waiver to get out of the hospital Friday because they wanted to keep her for emergency surgery right then and there!! She wasn’t having any of it. She’s back home now. Popped out of bed yesterday morning and immediately went about her normal routine, which for any good German woman involves a great amount of housecleaning. She won’t stop. Of course I am worried about her/my future, but so long as she’s still jumping out of bed and grabbing a vacuum I know things are “normal”. When she doesn’t feel like keeping everything in the house pristine I’ll know it won’t be long with her anymore. My wife does not fear death, she fears pain and the possibility of a lingering death in a hospital (like your dad). Because of the compassion of the Dutch, she rests much easier in the meantime. Also, her thirty year old son just had his aorta replaced in a Dutch hospital a couple weeks ago!!

    Our visit to the Hemer Lung Clinic:
    http://www.flickr.com/photos/timtimes/sets/72157632741943217/

    Video of Vince’s open heart surgery:

    First stop on my wife’s “bucket list” tour:
    http://thetimchannel.wordpress.com/2013/07/15/midnight-at-the-apollo/

    Even if I had a desire to return to the US, I’d be a fool to do so at age 55, given the medical issues/concerns you point out in your post, not withstanding the amount of money (we’d be bankrupt EVEN with insurance in the US over Rita’s cancer) it will eventually cost me as my health fails as well (so far, so good for me at least..). I’m gonna have to fight like hell to keep the business my wife started (and maintains) over here intact so I can stay here once she’s gone otherwise I’m gonna be at the mercy of the wolves in the US, just like you are.

    We’ll chat when you get over here closer to my time zone. There are no easy answers or simple solutions. Everything happens for a reason but not with a purpose. We are all forced to make the best of a situation in which we are all ultimately ephemeral. I learned as much when my mother passed away a couple weeks after I graduated high school. She was 36. My dad passed at 60 of liver failure from a bad blood transfusion. They (US medicine) tortured him to death, much like I fear they will do to your dad, refusing extra morphine for his pain almost up to the day of his death (from dehydration-starvation several days after pulling his feeding tube). That’s how they let you die in the US. Once your system is too weak to process the pablum they feed you in the tube, they pull the tube and let you slowly dehydrate and starve to death. Took my dad less than the two weeks some linger, but still. What the fuck is up with that???? Worst goddam experience in my life. They might as well have waterboarded him to death. Fucking healthcare fuckers in the US.

    Enjoy.

  • Jim Olson

    Prayers. And, FWIW, I’m in Chicago if you need anything.

  • PeteWa

    I’ve had to deal with similar with a few different loved ones, John, and it is very hard to deal with… horrible is an understatement.

    Best to you and your family in this trying time.

  • Phil

    Having been there with a spouse and a parent, John, it is the most helpless feeling there is. You’re in my thoughts and prayers as you go through this most awful passage of life. Hope your dad improves.

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