Losing the ability to swallow is an expected progression in Alzheimers. Here’s a good page on how to deal with feeding problems:
Who told you hospice is akin to murder? Shame on them.
Shell, my mother gave up on an endless medicare and processing wait and bought a motorized wheelchair for about 1k. Used, through some local org.
No, eso, calling hospice is not murder. The furthest thing from it. Calling hospice means a) you have accepted what’s happening and recognize that it’s no longer kind to torture a loved one with futile medical invasions and b) given the reality of the medical situation, you want the loved one to have the best possible quality of life in the time that’s left.
If you’re not sure, ask if hospice can come in and do an assessment. If she’s not ready yet, they won’t take her on, and rehab/treatment will continue. And, of course, her doctor is probably the first one to ask.
Deciding it was time for hospice for my dad changed my perspective immediately and completely. For some time, I (and my family and the doctors) had been seeing him as a difficult medical problem to be solved. Once we stopped trying to fix him, all of that fell away and he was once again just my loved daddy, and my only goal for him was comfort and peace.
I agree that hospice is a good thing. And it doesn’t mean death is imminent. It allows professionals to help you with day to day things. Definitely see what the doctor thinks.
I’m volunteering at a hospice now and the reactions of families are so strongly positive. There are different types of services, in-patient or home support. It is about that time when active treatment is no longer necessarily the right choice.
Some families talk about how hard the decision was, to move to palliative. They didn’t know what to expect, were afraid. It is a major decision. But they also speak, as LasMa does, of how meaningful it was, for the patient and loved ones. If the docs advise it, don’t be afraid. Feel free to ask questions. And then, at ours, after-care available for bereaved families, emotional support.
Esobay-
My 89 year old father in law, with advanced dementia, had two hospitalizations in the last 10 months developed swallowing problems.infection and fever were treated and eventually swallowing returned, rehab helped.
There has been a big issue with phlegm, which may be treated, too.
The family had decided no feeding tube, if came to that. It didn’t.
Thanks cardinal fang- good info.
Also, teepa snow, suggest putting medicine in teaspoon jam if needed, not applesauce or pudding, because alz patients like the sweetness of jam, and the texture disguises the medicine. You can find her tips on you tube, a psychiatrist - director of memory clinic, and assoc prof at Johns Hopkins, told the audience at south jersey alz conference on Tuesday, to google teepa snow for advice about positive care techniques for dementia patients- FYI. Her you tube videos are amazing, and he raved about her.
eso,
hospice was wonderfully helpful. Please PM teriwtt, as she worked in that field for a long time. She is a gem.
My mother’s one regret is that she waited so long to call hospice. They were truly a blessing when they came. They were only involved for the last 2 weeks of my grandmother’s life, but we have very good memories of the care they offered to my grandmother and also to my mother (the main caretaker).
Hope you all don’t mind me popping in to add my observations and experiences on hospice services as recalled from my 8+ years working in one (have been retired for four years now).
Hospice is not murder. The philosophy is to do nothing that either hinders the dying process, or accelerates the dying process. Patients/families of patients agree that, once they’re enrolled in hospice, they will forego seeking any treatment that is meant to be curative in effect; i.e., cancer patients can no longer be receiving chemotherapy (some radiation is OK, because it can be for management of pain symptoms); heart patients are not going to pursue cardiac surgery, etc.
I could get into the specifics of the challenges patients with dementia will face, but it’s not really necessary because what’s important to remember is, hospice will not certify a patient for their services if they do not have a physician’s written orders to do so; and a physician cannot write those orders unless, in their best educated understanding, they believe the patient will not survive more than six months, given the usual trajectory of a specific illness and where the patient is in that process. Now of course there are exceptions to this, and this is why hospice agencies are required to re-certify patients for benefit periods. The first benefit period (starts on day of admission to hospice) is for 90 days; each subsequent benefit period is for 60 days. When each benefit period expires, the agency must seek recertification from both the patient’s attending physician, and the medical director of the hospice agency. And in order to get these recertifications, the hospice nurse’s medical charting must demonstrate a decline in the patient’s health… that’s all. And it can be as simple as weight loss (which becomes very common in dementia patients as they eat less). When I was working, I remember a handful of patients who were on hospice services for 3-4 years! But at each recertification, the nurse was able to demonstrate (through their charting) a decline in the patient’s health.
On the other hand, it was also not uncommon to discharge someone from hospice care. If, at these recertification periods, the medical staff was not able to demonstrate a decline, the patient would be discharged. Sometimes this happened with patients with dementia and it’s often due in part to the placement of hospice in the patient’s life. When a patient is signed onto hospice, a thorough evaluation will also include a review of all the medications the patient is on. Sometimes some of the symptoms patients with dementia develop are due to too many medications/poor combination of medications, etc. When hospice comes in and reviews all these medications, they can make recommendations to take patients off of some medications that are really unnecessary, or other times, add some medications to help alleviate symptoms, and when this happens, the patient may begin to eat more, or be more active because they feel better when taken off medications, or are perhaps given pain medications. In other words, these changes in medications stabilize them to the point where they can re-engage in life and at that new level, the physicians are not able to certify that this patient will die within a certain time period. I saw this happen a number of times… the hospice nurses get in there, review medications, make changes with the approval of the patient’s attending physician and hospice medical director, and the person’s life suddenly gets much better for a while to the point that eating more and being more active sort of puts a stop in the progression of the disease over the short run. Again, this kind of experience mostly applies to patients with dementia, but can occasionally be seen in people with certain neurological disorders, where they plateau for a while after what had been initially considered a major crisis.
The practice at the hospice I worked at involved weekly interdisciplinary meetings, in which each patient was discussed every other week. At those meetings, everyone on the team contributed to the discussion based on their recent visits with the patient, and included the nurse case manager, CNA, social worker, and chaplain (the hospice medical director and hospice pharmacist were also present at these meetings and contributed as necessary). And a consensus would be obtained on how to best move forward with the patient, although many times, it was really just to continue care as it has been provided. But things like weight loss/gain, pain level, activity level, abilities to participate in ADLs, level of awareness, ability to put a certain number of words together to express a thought, etc. were considered. This might also be where the team would discuss how the patient’s family was coping, whether they were directly involved in the patient’s care or not. Issues of safety might be addressed. From what I remember, if a patient’s family member lived out of town, but was the one mostly involved in decision-making, the nurse case manager would update them after these interdisciplinary meetings via phone.
These days, most larger hospice agencies now offer palliative services as well, so if a patient doesn’t qualify for hospice services (the physician won’t certify them), they may be offered this in place of hospice. Yes, it is a way for hospice agencies to get their foot in the door, hoping that when or if a patient does qualify for hospice services, the patient and/or family will choose to stay with the same agency. But none of these things will happen unless a patient qualifies by meeting pretty clear-cut standards set forth by Medicare (which almost every insurance company also follows) for either palliative care or hospice care.
I hope this clears up any misconceptions about hospice being murder, because as I’ve illustrated, hospice can sometimes be so good for a patient, that they’re discharged due to stabilization!
One of the most frustrating things that hospice workers experience is how long families wait to sign their loved ones up for hospice. We had too many patients who were only on our services for a few days or less, and would have had such a better quality of life at the end had our team been in there earlier. Hospitals and nursing home staff are just not staffed and trained properly enough to deal with end-of-life issues, unless the patients are on a hospice-designated floor of that hospital or nursing home. It’s a different approach to nursing than most hospital and nursing-home are used to dealing with. When my own mom was in hospice the last three days of her life, in a hospital (she was too sick to transport back to her AL), and even with me there asking for things I knew to ask for, it sometimes took me calling the hospice agency and asking for the case manager to either stop by or call the hospital to issue orders (such as putting a stop on checking her blood pressure - it was very uncomfortable for her, and really unnecessary at that point).
I probably lost a few readers some paragraphs back (too long!), but for those who have continued, if you have any more questions, please feel free to PM me.
Hospice was a tremendous gift for my dad, and I just can’t say enough good things about the peace and comfort it brought to him and to all of us. If he didn’t want to eat anything but a spoonful of ice cream, that was fine. All the uncomfortable/painful medical interventions ended. The pain and anxiety control was handled much more effectively. It was a blessing.
Thanks for a more detailed explanation, terwitt. I have sat with hospice for my sister and my Dad’s wife so I knew some of the things, but since I was not the main point of contact for either of them I didn’t know many. I certainly saw how them help people who are just bumbling around (or what it feels like anyway).
I doubt Mom’s Dr. would be willing to certify, but he has recently adjusted her meds, which seems to have helped her appetite. I’ve tried for the last year to get her off the massive (40mg) statins, I just see NO NEED to keep her cholesterol down at this point.
Mom is in ORE, which has good POSLT (end of life specifications, talked about it somewhere up thread). And having that registered is a big help for me. She isn’t in a physical need of painful medical interventions, but is confused and scared of even the swallowing test she had done today. She told me that they must have pulled out her stomach because they told her she can’t have salads anymore! So she was trying hard to put it together.
It was my own Dr. who said that about murder, and I am also concerned about my brother’s feelings as he is much more religious than I and will perhaps not want to take more active steps (taking her off some meds might be considered active). But he is with me on not wanting her to have painful interventions; we both saw what that did when Grandma had surgery when she was so far gone in Alzheimers she couldn’t speak. They were so proud she made it through surgery and I could not understand WHY. Anyway, I do thank everyone for the support.
CF, I’d read a lot of that too, that is one thing we computer people do is internet research!
SouthJersy, thanks for the note on getting therapy helped. That was a question I can’t seem to find out … does it really help help or just get them more attention. But if it can build her up, that would be good. She was doing pretty well really until the bad flu and the not eating after that for a month . Now she is just so weak that nothing much is working.
@ Google thickened liquid challenge and go to the Geri Pal blog to read more about this, in case it is recommended
teriwtt, thank you so much for that post. From the family’s perspective, I wanted to add one other benefit, which is that the hospice worker we saw and the literature she gave us was extremely helpful in knowing what to expect as Dad went through the dying process. It was because of that that I was pretty sure Dad was near the end, even when the SNF nursing director was insisting that he had another 6 months or more.
I also wanted to toss in an unfortunate insurance factor. Medicare covers hospice care. BUT at the time, Dad was in a SNF under a Medicare rehab claim, which would have ended the moment the hospice care began. So he would have become private pay to the tune of $9K/month. We were ready to pull the trigger – had the agency lined up, had his primary’s OK, and were frantically trying to get him out to a Board & Care at the time he died. I was blessed to have a great working relationship with his primary, who agreed that it was time to stop medical treatment for his various problems. Together we tried to create as much of a hospice-like regimen as possible at the SNF. She worked with the SNF doc to take him off a lot of his meds, stop all medical interventions, make sure his diet order said not to push food, etc. So I don’t think he was in a lot of unnecessary distress. But I sure would have loved to actually have hospice for him.
Still, I count my experience with hospice as a good one. They were really really helpful in helping us to understand what was going on. They even called me when they heard he’d passed, to offer condolences and any help they could give us. Beautiful people.
Sharing this very detailed 79 page training Manual of teepa snows positive approach to dementia"
Page 25 deals with eating , swallowing issues of the advanced patient.
Somemom- scary realization that thickened liquids are so bad professionals can’t tolerate for 12 hours, and it causes dehydration. What is the solution then? My father in law has aspirated food twice, causing hospitalization, infection and he is barely eating two meals now?
Eso- given the issues you raise, perhaps a geriatric pharmacological consult, including potential side effects and interactions, would be useful at some point. This can be done in a palliative care or hospice context, or not. Could be an objective way for you and brother to do the cost benefit analysis of particular medications. Some meds may potentially impact cognition while providing little direct benefit, for example. Also, some may prolong life, while not improving quality of life. Others may serve a purpose but take a desired med for another issue off the table. At times, there may be too many interactions or aggressive dosing relative to a patient’s age or condition.
These are very personal, individualized decisions; expertise and a fresh look at the whole picture can help a family make them.
http://anha.org/members/documents/DealingwithDistressHandoutAttachments.pdf
Link to 79 page extremely helpful dementia info- page 25 eating issues
My mother has been on a pureed diet and thickened liquids for 8 years due to swallowing issues, the result of a stroke. Her liquids have gotten increasingly thicker over the years. There are 3 gradations of thickened liquids: nectar, honey, and pudding. She is now on pudding thickened liquids. Yes, there are concerns about hydration, but she gets the same amount of liquids as she would’ve gotten if they weren’t thickened, and the thickeners don’t decrease the moisture content, just the consistency (from what I’ve read). Considering how long she’s been on thickened liquids, they can’t be doing her harm. I do know she either would’ve choked to death or died from repeated aspiration pneumonias had she not been on this diet.
@teriwtt, Thank you for sharing. We used hospice for my dad the last month of his life and I’m so grateful that the program was available to us. My dad had bone cancer for his last two years, but my family was fortunate because we had enough siblings within driving distance of my parents’ home that he was able to have 24 hour care provided by family members until the very end. Hospice made it possible for us to create a situation where he could die at home like he wanted. They were wonderful.
May I ask for any advice re very swollen feet/ankles? My 84-year-old father is basically dying from heart failure at this point, but it is the swollen feet that bring on the most complaints at the moment. I have read about edema and suggested elevation his feet, cutting out salt and doing some walking. But - eating is pretty much his last remaining enjoyable activity and when I suggest he needs to walk a little - all he does is yell that I do not understand how hard it is for him to walk. I picture him keeling over while sitting and eating a corned beef sandwich. Which I guess is not the worst way to go.
Any ideas?
You can buy knee-high socks with mild compression. I have found them at Walmart, Dr. Scholl’s brand. Stronger compression stockings are better but may be hard to put on/take off.
http://www.walmart.com/ip/DR-Scholls-Men-s-Compression-Socks/20700346
But the best advice is to elevate his feet when he is sitting. Does he have a recliner? The higher the better; best if his ankles are higher than his heart. But less is better than feet on the floor. Also if you can elevate the foot of his bed. You can just put some fat books under the box spring. A little goes a long way.