Complicated Death, Complicated Grief
October 24, 2013 2:41 AM   Subscribe

In mid-May, my mother, who was the primary caregiver for my father with Alzheimer's, died suddenly. We spent weeks trying to get my father into a suitable situation, which quickly ended up in his death (a long story, so please bear with me). I'm looking for ideas on how to cope with uncertainty amid tragedy.

Shortly after my mother died, my father got out of the house that he and my brother were living in, and ended up in an emergency room. My brother, panicked about keeping Dad safe, immediately placed my father into an assisted living facility (I'd suggested alternate plans of my partner and me taking care of my dad while we researched a suitable place for him or putting Dad in adult day care). The home he picked was nonprofit and well-rated on the Medicare site. Shortly after his admission, ongoing problems were brought to my brother's attention—my father had gotten into an altercation (in fact, had been attacked by one of the other residents) and he was urinating all over. About two weeks in, the home called and said he wasn't a good fit, and they wanted a conference the next day to figure out a better placement for Dad. The very next day, they called my brother and said they were sending him to the “senior behavioral unit” (i.e. the psych ward). He was strapped into a chair (because he had apparently fallen, after the drugs they had given him) and couldn't get up to go the bathroom by himself (something he had been able to do two weeks previously).

The social worker at the original nursing home never called us back; my brother worked with the social worker at the hospital to find a more suitable placement for him. it took 6 days for the original home to examine Dad and say that they were not taking him back, and another 11 days to find a spot that was free for him, and by the time my father arrived at the new place, he wasn't the same; the first night, he was twitching as if he was having a nightmare, and he never responded to me or my brother. Worse, he spit out food that had been lodged in his throat; apparently, he had lost his ability to swallow. The next day, he was more lucid, but when given water, spit it out.

The doctor of the facility was not scheduled to make his rounds for several days, and the care conference for Dad was put off until Thursday (five days later). At that point, I wasn't sure what I would be able to do (we thought that a lot of what we were seeing with Dad was a result of the drugs he was on), so I travelled home (a decision I'll always regret). After the care conference, my brother informed me that Dad was fighting an infection, and they would try an IV on him; if that didn't help, they wanted us to think about whether a feeding tube would be an option.

I did loads of research, and consulted a gerontologist friend, and all indicators were that feeding tubes were a very bad idea for Alzheimer's patients—they would pull them out, and would thus have to be restrained, which is something he definitely wouldn't have wanted--and that careful handfeeding would work as well.

I was hoping against hope that they would be able to do this, but if my father was resistant enough to pull out an IV, he would have resisted a feeding tube. We never agreed to the feeding tube (even the doctor's assistant said he wouldn't do it to a loved one); Dad was certified for hospice on a Thursday, and died on the following Tuesday.

Throughout this ordeal, we tried to make the best decisions for Dad, but in my incessant thinking about this, I keep being tripped up:

*Do I know that the nursing home did everything they could to save him? Did they carefully hand-feed him? (I will always regret not running back to town to do it myself.) I don't think I'll ever really know.

*Should we have tried the feeding tube? The home didn't realize how much of him was left just two weeks previously. Again, I'm not sure I'll ever know whether the swallowing issue was a part of his Alzheimer's, the result of a stroke (something I suspected when I saw him at the final nursing home), or a temporary thing resulting from drugs or his infection.

*Most importantly: In one of my grief counseling sessions here in Illinois, a nurse got indignant and said that what happened with my father was not legal here. How can I find out what is legal in Ohio, and to whom should I appeal? My ultimate goal is to make sure that this doesn't happen to other sons and daughters of patients with dementia and Alzheimer's.

In a situation like this one, how have you learned to deal with such an array of uncertainties, and with the fact that your involvement might have resulted in the death of a beloved, and the uncertainty that accompanies that? Did you try to investigate further, and if so, how? Or did you resolve to make your peace with this, and how so?

Note: I've started grief counseling, I've started reading When Things Fall Apart, I'm contemplating individual counseling, but I feel like I need to martial every possible resource to help me cope with this. I'm agnostic, so ideas that incorporate “your mother and father are together now” won't be of a lot of help to me.

An example of something that was: A hospice nurse telling me that a feeding tube is for the comfort of the family (so they believe that they did everything they could do) and not for the patient, who has to live with invasive, painful surgery which doesn't usually help.
posted by carrienation to Health & Fitness (21 answers total) 14 users marked this as a favorite
I'm sorry for the loss of your parents, so close together, and that it unfolded in such a murky, chaotic way. What a lot you have on your plate right now.

Since you're asking for resources and not a pronouncement on what happened with your dad, my recommendation would be that--in addition to individual work--that you find some sort of group where you can unburden all those complicated feelings you're feeling and find some comfort in being able to share with and listen to the stories of others who have had similar, though never identical, experiences.

I've gotten a lot of benefit from participating in an e-mail list based group that is "always on" when I need to say something, where things that other people comment on lead me to shift my way of thinking. The experience of hearing someone else's tale of survivor's guilt and reacting with an "oh, no, it wasn't your fault" is somehow easier than telling yourself that the things you could have done differently doesn't make it your fault. It's easier to be compassionate to others than it is to be compassionate to ourselves. After a while the comforting things that you say to or think about other people's start to reflect back on your own situation.
posted by drlith at 3:17 AM on October 24, 2013 [2 favorites]

I'm so very sorry for your loss.

I'm not a doctor, nurse, or any kind of expert. But when my grandfather went into decline, it was fast, and he refused food. He even refused booze which was unheard-of for the old boy. It seemed like he was ready to go, and didn't want to hang around any longer than he had to once he'd seen the way out.

There's absolutely no way I'd have wanted a feeding-tube put in, and hand-feeding would have been difficult, potentially still pretty undignified, and possibly futile. So I think I would have acted exactly the same in your situation.

I don't think there was anything more that you or your brother could have done in this situation. It sounds like an incredibly traumatic time for you both. When you've had time to process your grief, if you want to then by all means look into whether the system can be improved for future patients. That would be a brave and valiant thing to do. But give yourself time to heal a little first. You deserve it.
posted by greenish at 3:51 AM on October 24, 2013 [11 favorites]

I can't tell you how you should feel about this, but I can tell you some of how I feel about old age and dying and maybe it will help.

When I'm old and falling to bits and especially if I have dementia, my death won't be a tragedy. It will be the natural end to my story; the only question is how long and unpleasant and difficult the end will be. Because ultimately, I have to die of something; and a long stay in a strange place where everything is uncomfortable, and your life partner has gone, and you're confused and afraid - that's not a good end. I'd rather follow my partner to wherever they have gone.
posted by emilyw at 4:07 AM on October 24, 2013 [18 favorites]

I am so, so sorry for your losses.

I read your story, and get that sense of stunned and overwhelmed regret. I don't know if this will help you or not but I think that swirling uncertainty and second guessing after a loved one's death is incredibly common. In the past few years I've watched several friends and family members have to deal with the pain and chaos of someone's final decline and in almost every case there's that same stunned sense when looking back at the situation as it progressed. When they look back, they can see that things changed so fast, and in hindsight the significance of newly emerged symptoms or problems may become more clear. Often people struggle to make sense of events and causalities and never find any clues that could have warned them of what was to come or guided them to make different decisions.

I guess what I'm trying to say is: I am by no means an expert, but I think that when people's bodies get to the point where they finally fail, the symptoms and responses are so far out of the range of normal experience that I don't think it's easy or oftentimes possible for family members and caretakers to make sense of things. I think it's also often really difficult for health care providers, who are more experienced but also are almost always acting with incomplete knowledge and have to try what appears to be the best option at the time, which may in hindsight be wrong.

It's just hard, really hard. You are not alone, not by a long shot. Finding a grief support group is a really good idea.

Take care.
posted by Sublimity at 4:24 AM on October 24, 2013 [4 favorites]

I'm so sorry for your loss. I am not a health care person in any way shape or form but my MIL had early onset Alzheimer's and one thing I always thought was the minute she was placed in a care facility she declined rapidly. In our experience it was hard to find a facility that was well suited for Alzheimer's even if it's states it is. And especially if they are still mobile. IMO it seems most facilities like them pretty much incapacitated. Nthing "When Things Fall Apart". It's a great book even if you are non-religious.
posted by lasamana at 4:31 AM on October 24, 2013

I am so sorry. When my mother went, after two years of multiple hospitalizations and deep depression, it was technically an "infection" that killed her. But, weeks before she had as much as told me she was tired and wanted to die. I still think there were many mistakes made in her care, and I do blame our fragmented, inadequate healthcare and eldercare for a lot of the misery and misdiagnosis she suffered. At the same time, I think, after watching both her parents slowly decline, she was getting what she wanted, to let go and stop hurting.

Your father didn't get what he needed or deserved either. But Alzheimer's patients can decline very quickly, and things were not going to improve. You can be angry at how he was treated and still know that he was ready to let go. That's where I had to end up with my mom.
posted by emjaybee at 5:03 AM on October 24, 2013 [6 favorites]

Oh, sweetie. I am so sorry. Death is never easy, but a swift, messy death is always especially brutal. Unfortunately, in this country, with this healthcare system, very few people get the "right" kinda death... even with advance planning, even with explicit wishes, even with lots of time to plan, things can and DO often go awry. Insurance companies do evil things, care providers fail to communicate, families defy their loved ones' wishes, medical complications pile up... you get the gist. Which is to say: I get the impression that you may be feeling some guilt/sorrow over how "wrong" things went, and searching for answers as to how things could've gone "better". But I don't know if those questions are answerable. Even if you had made the exact opposite choices - and rest assured, given the circumstances, you did what you believed was best for your dad - things could've still gone in unanticipated directions.
posted by julthumbscrew at 6:29 AM on October 24, 2013 [2 favorites]

I'm sorry for your losses. This must be a very hard time for you.

It sounds like everyone was trying to the best of their abilities and resources to do what was best for your Dad. He was in a bad place because he had lost your mom and his care situation. This is incredibly destabilizing for folks with memory related diseases.

Please believe that he would not have wanted you to drop everything and return home so that you could hand-feed him. He may not have accepted food that way.

In many, many cases, people decide when it's time to go. Your Dad may have done so himself. I'm sorry it was so traumatic for you, but there's no need to blame yourself. You did the best you knew how to do.

For sure look into individiual counseling.

Also, when a loved one has as painful a disease as Altzheimers, it's okay to be relieved that they're gone. I'm pretty sure they're happy to have moved on.
posted by Ruthless Bunny at 7:03 AM on October 24, 2013

This article from the Atlantic about end of life care might be helpful. More specifically, it really does sound like you did everything you could and were careful and caring in your decisions, even when the system did not make that easy. I'm so sorry.
posted by dizziest at 7:04 AM on October 24, 2013 [3 favorites]

My father-in-law has Alzheimer's. My mother-in-law is the primary caregiver. We have been actively struggling to get them closer to us so she can have some support in taking care of him, but unfortunately, due to all the snowflakes, it's been almost impossible. Dad taking a turn for the worst or something else catastrophic will be the only thing that changes the situation as far as we can tell right now.

Dementia/Alzheimer's sucks. There are no really good answers. You did your best. Please know that.

All my support.
posted by Sophie1 at 7:10 AM on October 24, 2013

I lost both my grandfathers this year. I am so sorry for your loss. It sounds like you did the best you could with the knowledge that you had at the time.

*Do I know that the nursing home did everything they could to save him? Did they carefully hand-feed him?
If your body is shutting down and your fluids are not properly being shunted around, do you think it would be comfortable to try to swallow food? To try to digest it? Have you ever eaten too much and then gotten on an airplane and felt that rock feeling in your stomach? If he was not able to swallow then hand feeding would have just led to food particles in his airway and lungs causing a painful infection like pneumonia. It is ok if they did not try this, and I doubt he would have allowed it if he was spitting things out.

*Should we have tried the feeding tube?
No. Emphatically no. The only thing my grandfathers requested once they were in hospice was to be moved a bit up and down on the bed to alleviate pain points and occasionally they would ask for a sip of water.

Your father did not have the option to survive his own death. Easing his transition by making it mercifully short and free of painful interventions is the last, best thing you could have done for him.

One of the hospice workers told my family that she actually prefers that her patients have time to be alone during their care as it allows them to retreat a bit and let go. I don't have any religious faith, so my idea on death is that it most likely feels like going to sleep or being put under anesthesia. I have done the surgery prep thing where you have to fast for a full day before the procedure, and despite my growing fear of needles and the anxiety of being in the hospital the feeling of going under was one of relief. I think it must be the same for those who are dying. The days of dehydration and discomfort all lead up to a final feeling of falling asleep and letting go and it must feel like such a release. I hope this comforts you.
posted by skrozidile at 7:56 AM on October 24, 2013 [2 favorites]

I am so very sorry for your loss. I can't imagine how difficult it has been for you to lose both of your parents so quickly.

My grandmother was diagnosed with dementia five years or so ago. She has been on a fairly rapid decline for the last few months and it has been very painful to watch her as she loses her memory as well as her dignity and mobility, knowing that her end is near.

Seeing her like this has made me come to terms with some things that in my 41 years I've really tried to avoid realizing, the first being that none of us gets out of this journey alive. We all lose the battle in the end, some of us long before we ever should. I've tried to console myself with the knowledge that my grandmother lived a long life, was happily married for many years and was loved by her family.

Conditions like Alzheimer's and dementia can deteriorate very rapidly and there is very likely nothing that could have been done any differently to change the eventual outcome or would have prolonged his life for any considerable amount of time. You and your brother did what you could to help your father and alleviate his suffering and second guessing yourself, though completely natural, won't help you at all. Please realize that you are in no way responsible for your father's death.
posted by BrianJ at 8:05 AM on October 24, 2013 [1 favorite]

I am so sorry to hear this, my deepest condolences.

I have been going through the same kind of thing this year, albeit with my aunt who I was primary guardian of. I can tell you that from the perspective of my father-in-law's end of life, a feeding tube is brutal. Inserting a feeding tube kept my father in law alive in the most basic sense for another year. He rapidly became incommunicative and pretty much shut down, but his body remained alive. It looked like he was in a weird purgatory.

Your concerns that the nursing home may not have understood how viable he was two weeks before? It sounds like he was fighting on so many fronts, so his deterioration was rapid. It's common to second guess though. When my dad was in hospice and had yet another onslaught of pneumonia that doctors were treating with stronger and stronger drugs (he was ostensibly dying of prostate cancer), doctors suggested strongly to my mother that the treatments he had to endure were creating a quality of life that may not be worth sustaining. It looks like your father's situation was in some ways similar. After spending at least one day a week visiting a nursing home for the past three years, I can tell you that dementia is hell. My aunt's dementia was not a problem for her as she's always been used to being cared for. For some people dementia is hell, and finding the right drug therapy that allays their fears and agitation, but also allows some quality of life is difficult at best. I've seen too many terror filled rheumy eyes to wish that on anyone.

Anyway a couple of weeks ago I sat with my aunt after making the decision to stop treatment, until she passed. I have weird guilt, too. And it brought back all the stuff from my dad and father-in-law. I don't think these things are ever easy, it's just not that way.
posted by readery at 8:06 AM on October 24, 2013

I am so terribly sorry for your loss. We lost my father-in-law this summer, pretty quickly after a diagnosis of brain cancer. The what-ifs and we-should-haves still linger. I can't imagine losing both parents in such a short time.

On the questions that you have about whether the care your father received was appropriate or "legal" (as the nurse so indelicately commented), I would suggest you consider contacting the Ohio Long Term Care Ombudsman's Office. They should be able to help you understand the standard of care, and, if there are problems in the facility that cared for your father, you bringing it to their attention may help another family.

Again, I am sorry for your loss. Please continue to be kind to yourself and do what you need to do in order to process all of this.
posted by Lulu's Pink Converse at 10:25 AM on October 24, 2013 [1 favorite]

I hope you count anecdotal evidence as a resource.

I'm a speech therapist in a UK hospital and I work with a lot of people with dementia at the end of their life when they have swallowing problems. Swallowing problems are the cause of many (most?) deaths with dementia. I just wanted to say that your experience with your dad is so typical in terms of his medical progression and however you had acted, no matter how much careful hand feeding he had, you likely wouldn't have changed the eventual outcome. This is how people with dementia die and that's tragic, but it's also inevitable.

It is clear that his care was not handled ideally, and if you think it will help you to investigate that, go ahead.

In the UK, the Royal College of Physicians have issued guidance about the use of artificial feeding at the end of life in lots of different conditions. Their conclusion is that in advanced dementia it does not prolong life and carries significant risks (such as risks of surgery, risks of pulling the tube out, infections and risks of refluxing and inhaling the stomach contents). The less tangible risks include the mental pain of being in a care home around people who are eating and drinking when you are not allowed to, the loss of social contact associated with mealtimes and the loss of pleasure of favourite foods and drinks. This guidance is not without its critics of course.

The 'careful hand feeding' that you refer to is the idea that by going slowly, reminding someone to swallow, monitoring posture and modifying food textures, you can reduce the risks of choking or inhaling food and drink. This only works if the person isn't refusing food and drink. I think this is a pretty good route to do down, but if you can't get the person to eat and drink it doesn't help. It also carries an eventual risk of a fatal pneumonia. Careful hand feeding would be a default at every nursing home I know of if a resident is struggling, though the skill in feeding will vary. In the case of refusal, I try to get the relatives to step back and think about how this problem could possibly be solved? There's no way to reason it out with the person with dementia, so would you force feed them? That's not kind, and it's also illegal.

You were in one of those situations where there isn't a right answer and it's OK to have made the best decisions you could at every point with the information and judgment that is available to you at the time. I cannot think of a single one of my dementia patients who had a permanent feeding tube that I think benefited from it. Temporary feeding tubes? Sure. In conditions other than dementia? Sure.

The suddenness of the problems swallowing is very likely to be to do with the infection they talked about. As we get older, all our body functions become more vulnerable to going wrong. Dementia also affects the swallow. Add an infection - imagine having terrible flu - and that swallow that was previously a bit fragile but working adequately suddenly can't cope. It might have improved if the infection had improved, but it's likely it would not have got back to normal.

Swallow problems can be induced or exacerbated by some medications, e.g., see here. In particular, the neuroleptics are often used with people with dementia who have 'behavioural problems'. But I wouldn't blame your medical team for having used any of these drugs - they are fairly standard and I have to do a lot of explaining if I think a doctor should try another drug because of swallow problems. These side effects are reversible.

The problem with death is that unless you are lucky enough to fade away in your sleep, it's pretty brutal and horrifying. Sometimes awful errors in care happen and they should be investigated and learned from, but sometimes it's just that dying is horrible. I wish you the best in making sense of how you feel.
posted by kadia_a at 10:58 AM on October 24, 2013 [8 favorites]

My father doesn't have dementia (luckily, he's still pretty damn sharp), but he is in assisted living with nursing care right now after a series of medical events. Before he moved there, after learning in the hospital that he had trouble swallowing (dysphagia), he was given the opportunity to have a feeding tube put in. He was luckily lucid enough to decline. A primary reason why he did: His gerontologist said that as far as he was concerned, personally, he enjoyed food too much to ever agree to a feeding tube. My father considered that the best evidence there was against getting one—that the doctor himself wouldn't want it, even if it would potentially keep him alive longer, and even knowing the increased risk of pneumonia from aspiration without one. So consider that a data point.

Anyway, as far as who did what is concerned in your father's case, I would want to investigate further into the situation at the first nursing home—just to know what happened. It sounds like your father really declined there, and I'd want to know exactly how that occurred, even if it made me angry to know. This is not legal advice, IANAL, etc., but it seems to me they should have done a more thorough assessment of whether your father was a good fit for them before they took him on, as well as done everything possible to provide the higher level of care he needed up until he was able to move to another facility. I think they're required to do at least that much! As frustrated as we felt when one assisted-living facility turned down my father due to his high level of assistance needs, we were both also glad to have that answer, because we wouldn't have wanted him to be accepted somewhere, only to find that they couldn't meet his needs after all and have to move him again in a short time—or have him get hurt or sick in the meantime.

Moreover, there are laws re: when it's acceptable to restrain elders—I'd also think there would be some regulations about providing a safe living environment where elders are free from assault! And re: the social worker at the first nursing home not calling you back, that's just unacceptable. I also understand, though, that once the family had decided to move your father, the unresponsive social worker and those other issues probably just seemed like more reasons for him to move somewhere else, not necessarily a good impetus for a fight with the facility. (Been there with other issues...) I will say, unfortunately, delays in getting someone set up at a new facility, including getting assessments done, transport arranged, and then a care-plan meeting arranged at the new facility, are pretty common—but I would also want to know what exactly was occurring while things were still in process. Otherwise, at the second care facility, I would want to know what kind of infection he had, and how he got it (or how they think he got it), especially so soon after his arrival.

There are also some family questions there for you to answer, if you want to dig into that—and you may not. I know that if those things were to happen to my father, my other family members would want to know how hard I had pressed the facilities to do better, to stay vigilant. But there's also only so hard you can really push your family for answers in situations like this, and I think even my family would realize that at some point, what's done is done. More useful, right now, would be reading up on common legal issues in elder care and what your father's rights were in this situation—this National Senior Citizens Law Center publication is extremely helpful on that front.

All of that said, as much as I think the desire to know what happened would burn pretty strongly in me, as it does in you, I'm also coming to the understanding that the end of life in nursing homes tends to have a familiar narrative. There's an initial incident or impetus for arriving there; there's often a decline in those unfamiliar surroundings, even if everything else is going well; and unfortunately, vulnerable, elderly people often end up getting infections and passing away. That's not to dismiss your concerns, and I'm not saying that your father should have died that way—in fact, the very existence of that narrative is something I feel like I've been actively fighting against myself, since my father is a very young assisted-living resident, and I worry that people who work in such care facilities often assume that if you're there, you're in some way not worth fighting for, or that you're "just going to die anyway." But to put this in perspective, nonetheless, the average length of stay in nursing homes (PDF link to study results) is not long at all.

In any case, I'm so sorry for your loss, and I hope you can figure everything out and find peace for yourself and with your family after all of this.
posted by limeonaire at 12:25 PM on October 24, 2013

I, too, am very sorry for your loss and I am sorry you are feeling like this. I am not a doctor of any sort nor any other medical professional. But I am someone who had a mother who was sick for 11 years and a father who was essentially an emotional cripple. He did provide what he could but emotional support was not included.

I want to focus my comments on how you're feeling. It's pretty clear you're feeling guilty. But, in addition, it feels like you're feeling alone. And that is causing you a lot of pain. Yes? How close are you with your brother? He has shared a lot of your life and, if you're close it would be great to talk with him. Do you feel comfortable sharing your feelings with him? Is he someone you can trust? I grew up in a loony bin, essentially. And I am grateful that I have a sister who, while her experiences were different than mine (and she's a very, very different person than I am), lived that time with me in the same house and under the same conditions. Her being there validates my feelings.

In addition, I would agree with you: find a professional you can talk with. But if you've not had much experiences with therapists, remember that not just anyone will do. Find the right person (you'll know it) and don't be afraid to talk to a number of people before you decide.

I'm assuming there are a lot of overlapping issues in your life and your parents' deaths are perhaps triggers for how you're feeling. It's hard to feel this way. One doesn't know what to do and it's like a cloud that follows you where you are. In addition, it's hard to separate the specific issues with your father's death with the more normal grieving process. Losing one parent is hard; losing both so closely together is really, really hard.
posted by Taken Outtacontext at 2:59 PM on October 24, 2013 [1 favorite]

I'm also very sorry for your loss. My father passed away a year ago under very similar circumstances including the moves between places of care, dementia, a few days stay in a psych ward, increasing deterioration of function, difficulties in finding someplace that could care for him adequately. He really did need to be restrained but understandably no place was willing to do it. It was just a nightmare, really. When he did pass, my sister experienced many of the same emotions you expressed. Did we do enough? Did we do the right things? What if we had done this instead?

The reality is you do the best you can on any given day. We exhausted every resource and then some. But if your experience was like ours, and it sounds like it was, we were absolutely totally exhausted mentally, physically, and emotionally by the time he passed. And he would have died anyway, if not that day, then maybe a week or two later, and that extra time wouldn't have been quality time at all, just more pain and struggling. In the end, he stopped eating too, but he had a couple of days of peace and dignity before he went. They told us that was part of the body's way of shutting down. So take a deep breath and let it go. You did all you could've done.

Everybody handles grief differently. I wasn't especially close to my dad but I cried at the drop of a hat for six months after he passed; sometimes I cried for days. It certainly affected many of my relationships. Given that you had a double loss in a short time, it is certainly understandable that you are still working through your emotions. Yesterday was the first anniversary of my dad's passing, and while it wasn't a happy day, it was okay. You'll get through it one day at a time. Ask for help if you need it. Share your experience with others. So many people are walking that same path and it helps to know you're not alone.
posted by tamitang at 5:03 PM on October 24, 2013

Was your father on Medicare? If so, you can call 1-800-Medicare and register a quality of care complaint. Ohio KePro, the state's Quality Improvement Organization will review the medical records (it's peer review, so physicians and nurses will be looking at the records) to determine if the Standards of Care were followed. This is all free, since it's paid for by Medicare. It's too late for your father, but if someone finds themselves in a similar situation, you can call the QIO as things are happening and ask for immediate advocacy. There's a QIO in every state.
posted by Taystee at 5:32 PM on October 24, 2013

Just going through some of this myself, with my dad coming home from the hospital and into an in-home hospice care program (Medicare-funded).

Basically, overall, I would say that you need to stop beating yourself up and second-guessing everything. I think this is a way of -- to be blunt -- denying the reality of death and the fact that it's often out of our hands. In terms of care there can be several different approaches to it but all of them have the same end-point if the patient is already suffering from a terminal illness.

We go back to my grandfather's last illness and the then somewhat-new concept of advance directives. My parents both set up living wills in which they asked for no extraordinary measures that would leave them, in the popular shorthand, hooked up to a machine for life. This was further enforced by stays in the ICU for both my parents during cancer treatment (successful in both cases; we had an extraordinarily good physician who caught things early). Watching my own dad, now, struggle through the dark nightmare of dementia has stiffened my own resolve not to end up in a long-term situation where quality of life is extremely limited.

I think we have achieved a sort of American 'way of death' that is heavily dependent on these extraordinary measures, largely to gain very little in extra time or extra quality of life. Whatever the figure is, it's something like 90% of medical spending in a person's life takes place right and the end.

The number one factor here, and I'm not blaming you as it's extremely common, was a failure to plan for this end-of-life chaos of intervention and decisions made in panic. Obviously your dad didn't fit in at that facility but there may not have been one in which he would be comfortable and simultaneously everyone else would be. Dementia can be that disruptive. Without your mother there to ease the transition and give him regular care, he was probably in a very confused and frightened state in a strange place with routines and geography that were just not familiar to him, yet unable to really learn well enough to deal with it.

I will say this about swallowing. I have been told this is a key indicator of final stage dementia, no matter the type. For some reason the complexity of the maneuver, the number of muscles required, and so forth just overwhelm the remaining brain power and if your father hadn't died from soemthing else, like a fall, the swallowing soon would have been the culprit regardless.
posted by dhartung at 4:05 AM on October 25, 2013

Response by poster: Thanks, all, for your sympathies and thoughtful replies. I hesitate to pick any best answers, because you've all been so kind and helpful, but I especially wanted to call out limeonaire for really understanding where I'm coming from. Having a father with Alzheimer's die gives the whole episode a complicated context; I certainly understand that Alzheimer's is a progressive disease with an end that's fairly predictable (and indeed, in some ways, I'd said goodbye to the father I once knew several years ago). But the actions of the first home really seemed to hasten his end in the cruelest of ways. They dropped the ball when evaluating him, and dropped the ball again in ejecting him in the way that they did. (Worse, when he was in the psych ward we discovered a large bruise on him that looked like a punch mark.)

A week before his admittance to the first home, he'd been able to go out to dinner with us, to joke, to have fun (even after my mother's death). For context, here he is, two months before he died. Being strapped into a wheelchair for 17 days is really when he gave up. And he got put into a psych ward for throwing a shoe.

Did I mention that, in the first home, when I brought him candy, he toddled out to give a piece of candy to the fellow who had attacked him? That's the kind of guy he was, and that's why his ejection makes no sense to me. What complicates things further is that the home was calling my brother every day, and my brother didn't tell me.

Anyhow, thanks again.
posted by carrienation at 7:17 AM on October 25, 2013 [1 favorite]

« Older Japanese (and Korean?) Home Cooking Techniques   |   How can I hack this teaching while disabled... Newer »
This thread is closed to new comments.