Parents caring for the parent support thread (Part 1)

Parents Forum Parent Cafe
2001

<p>ksm, so sorry.</p>

<p>I posted a long time ago, 90-year-old dad and 92-year-old stepmother with pretty severe dementia in their house with a live-in aide. Meanwhile I have a 58-year-old brother who will probably die within a year (had liver transplant 4 years ago due to Hep C, liver cancer from old liver has grown metasteses in lungs that have been removed until now but not looking good right now). My dad is certainly not as coherent as he was a year ago but he still cooks breakfast and supper every day and can carry on a conversation and worry about his son. Of course I have a 17-year-old high school senior too. My sympathy and empathy to all.</p>

2002

<p>ksm- can you get it reinstated based on the dementia Dx?</p>

2003

<p>ksm-- have you got Power of Attorney? Can you call up and try to get it reinstated?</p>

2004

<p>Thanks, everyone, for your suggestions. Yes, Cardinal Fang, I do have power of attorney, and I have called to ask for reinstatement. They told me that I had to call within 30 days. I did, however, follow up with a letter and am on my way to the post office, for what that is worth. This is going to end up costing thousands…</p>

2005

<p>So, for the rest of us who don’t want to end up in the same situation, what’s the procedure with a parent with dementia who can no longer make good decisions? We get Power of Attorney, but then we need to have the person declared incompetent, so that they can’t do what ksm’s mom did?</p>

2006

<p>Hmm, if you have POA, how is she allowed to cancel? I think that would be my point, and perhaps all sources have to be notified of POAs?</p>

2007

<p>Right, somemom. POA does no good whatsoever if the third party doesn’t know about it. </p>

<p>ksm, you may want to notify all of her third parties – insurance companies, doctors, banks and financial institutions, etc – and let them know that you have her POA and they are not to do business directly with her. In fact, I would talk to an attorney and have him/her draft a letter that you can send to each third party, along with a copy of the POA document. Then if they DO act on your mom’s say-so, they are clearly in the wrong, and you have a good argument that they need to fix it without penalizing your mom.</p>

<p>Note, this is not legal advice and I haven’t done it myself. But I do think consulting an attorney might save you a lot of money and grief going forward.</p>

2008

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<p>I would think this might vary by state some. For my Mom getting my Dad the POA allowed him to do things in her name … however it did NOT prevent her from doing things. To stop her from being able to do things we had to have her declared incompetent.</p>

<p>PS - My Mom’s incompetency hearing was the low point of her care so far … there has to be a better way to handle these situations.</p>

2009

<p>Wow- support to all. </p>

<p>This PoA stuff is a bit tricky and amorphous. Seeking legal advice can be worthwhile. Cognition problems often tend to progress, so being proactive can be a huge advantage. As PoA, it can make sense to request duplicates of all major correspondence, sometimes including bills, notices and statements pertaining to the family member who is becoming less competent. Even if you are picking up their mail at their address, important documents can start to disappear and it isn’t always obvious what is missing. Normalizing this early on can make a difference, another one of those “just in case” things. </p>

<p>Also, see what is required legally to have actions taken by someone with an active PoA declared invalid and not binding. Agree with others that there is likely a legally valid way to be the contact person and manager for various business transactions. What is required may vary by state and company. I found that once I had these set up and provided the PoA, they usually lasted for awhile, with occasional changes in paperwork requirements. </p>

<p>This can be a fine line to walk and when someone makes the “wrong” decision for the first time, you can be caught unawares. In some cases, having the statements, etc. sent directly to you rather than them may be the best course of action. If you don’t have access to credit card statements, debit/credit cards, etc., it is harder to inadvertently create problems. I handle my father’s affairs (and did for a long time before his dementia progressed). With the increase in aggressive sales calls, (what happened to the do not call list?), I am very happy to have all credit cards, checks, id cards, etc, unavailable to him. </p>

<p>Best to all.</p>

2010

<p>We were talking about how to plan and treat seniors with dementia, today I saw this blog post on the blog by Kevin, you will have to Google it as it is against TOS to post links, but I believe it is fine to post what the person said:</p>

<p>"Advanced dementia is a terminal illness needing palliative care. Unfortunately, there is a great divide between this statement of the world as it should be, and the current reality of the world as it is. Rates of pain and shortness of breath are high for patients with advance dementia. Patients with advanced dementia often reside in nursing homes, and few nursing homes offer specialized palliative care services.</p>

<p>And, as we can see from an article in this month’s Journal of the American Geriatrics Society, communication about prognosis and goals of care is still lacking.</p>

<p>In this study, Elizabeth Mann and colleagues asked health care proxies (generally family caregivers) of nursing home residents with advanced dementia a series of open-ended questions about do-not-hospitalize orders. Hospitalizing patients with advanced dementia is often (though not always) more harmful, leading to potentially burdensome and painful interventions (feeding tube insertion, needle sticks, restraints). All decisions to hospitalize must be made in the context of the patient’s goals and the risks and benefits of hospitalization, and alternative, namely, ongoing treatment in the nursing home.</p>

<p>A do-not-hospitalize order is appropriate for a patient whose goals are focused on comfort and maximizing quality of life without returning to the hospital. The health care proxy for every nursing home resident with advanced dementia should have a discussion about the goals of hte patient, the patients prognosis, and treatment options.</p>

<p>Dr. Mann and colleagues interviewed 16 health care proxies. They found:</p>

<p>10 nursing home residents had a do-not-hospitalize order. None were on hospice.
Many did not understand what a do-not-hospitalize order meant. Three thought they had placed a do-not-hospitalize order when they had not.
Many were not aware that their loved ones with advanced dementia would inexorably decline.
“Right now she’s not on physical therapy, which they took her off … She’s not walking … She used to walk. So I would like to get her walking again.”
There was also some justifiable concern that a do-not-hospitalize order would mean do-not-treat. Some people were concerned that the order may be too limiting — that there would be some situations where hospitalization would be appropriate, like for hip-fracture:</p>

<p>I could not imagine my mother falling and breaking her hip and not going to the hospital … Because I think that would be very painful for her. And [it] would be cruel. And someone could say well what’s the difference between having pneumonia and not going to the hospital and breaking an arm and not going to the hospital. And I don’t know that I can answer that except in my mind there is a difference …</p>

<p>We wrote about this exact scenario in a piece for JAMA Internal Medicine recently — an elderly women with dementia falls and breaks her hip, her advance directive states do-not-hospitalize, but her doctor and surrogate feel hospitalization and surgery give her the best chance of recovery of function and quality of life.</p>

<p>There are two issues here. The first is the need for doctors to ascertain and document the degree of flexibility or leeway that patients give proxies for situations like this. For example, “I don’t want to be hospitalized for any reason. Period. If I break my hip, just keep me comfortable in the nursing home.” Or, “Let my husband decide. No one can predict for sure what will happen in the future. Do I want to stay out of the hospital? Yes, of course. But I can’t say never.”</p>

<p>The second major issue is the suboptimal understanding of health care proxies of nursing home residents with advanced dementia about prognosis and risks and benefits of hospitalization. In many cases, this misunderstanding results from a proxy-clinician communication failure.</p>

<p>Plenty of room for improvement."</p>

<p>I think the no hospital status is a compassionate one.</p>

2011

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<p>This lack of understanding is also true about other end-of-life situations. Studies have demonstrated (and I think, repeatedly demonstrated) that when doctors offer some cancer treatments for incurable cancers, treatments that might offer an extension of life (or nothing), many patients believe that the treatments will cure them.</p>

2012

<p>We are relieved. Dad got a hearing aid. His hearing is about 90%. Mom’s hearing is between 36 and 60%, depending on the volume. She can still discern what is being said if the volume is increased and able to carry on a conversation if you face her, there is little or no background noise, and you speak loudly and clearly. With the sample hearing aid, in the noisy Costco environment, she could hear even if you were behind her and she couldn’t see your face. </p>

<p>Dad chose a beige pair. Mom chose silver colored and it will be ready for her return fitting in two weeks. I will be out of town at that time but am thrilled that they will both have the same type of hearing aid, that is different enough in color that it shouldn’t be confused. </p>

<p>The folks at Costco are very nice and patient. It’s the third time I’ve had her go for hearing testing and sample aids. Their insurance pays $759, so a bit more than $1000 is out of pocket for each pair of hearing aids. That seems quite reasonable to me.</p>

2013

<p>kms - same thing happened with my fil… his lawyer helped me get POA and I asked his doctor for a letter stating that fil was not aware of what he was doing. They reinstated, and I then notified all important policies (long-term health care, house insurance). They stated that they would not take any action based on my fil’s request until those actions were confirmed by me. Also, I requested a change of address so that these important bills come directly to me. Fortunately, I live two doors away from fil. His dementia is not so advanced that he can’t live on his own, but his judgment is really poor and he won’t acknowledge that there is anything wrong with him.</p>

2014

<p>Wow ksm. This is why I am as nosy as possible with my parent’s affairs. I go over once a week and check the meds, log into the bank account (I don’t want to do it from my home as they have a large sum in the bank and it will raise red flags prompting a call to my parents, them getting confused and thinking someone is stealing…), look at every check written and cash withdrawn, and look at the bills/statements. But, I am sure I can’t interfere with phone calls. My dad has made some bad financial decisions, but nothing significant yet.</p>

2015

<p>Somemom, I try to be very realistic which is why I have end-of-life discussions with them now and before they had dementia. I think I have a clear idea with both my parents where to draw the line. My mom says she doesn’t want to be kept alive if nursing home care is the best she can hope for and my dad says he doesn’t want to be kept alive when he no longer knows where he is or recognizes loved ones. They both have DNR orders.</p>

<p>But, I would be uncomfortable with a blanket “do not hospitalize” order. Sometimes a hip fracture needs to be repaired for palliative reasons. It is different than pneumonia as the pain and shortness of breath can be treated with medications. A hip can’t be splinted so that it doesn’t hurt when you are moved or rolled over. I would want to be consulted before any hospitalization and I would be sure to have hospice involved.</p>

2016

<p>Agree a hip fracture is an example of an ailment that can be quite painful. The stats somemom mentioned came up on another thread, (maybe when we were first discussing ACA/Obama care. ) Many don’t have a grip on the variety of situations. It helps to read the documents and discuss them with med folks. Not as simple as treatment, no treatment or just pain relief. I know WE know this, but many don’t.</p>

2017

<p>GT- that is precisely what I read about, generic no-hospitalize, but they did take one of those patients in to be treated for a broken hip. There is just no simple all or nothing rule in all this.</p>

2018

<p>Just fwiw: [Advance</a> Health Care Directives and Living Wills: Make your end of life choices now to ensure your wishes are met](<a href=“http://www.helpguide.org/elder/advance_directive_end_of_life_care.htm]Advance”>http://www.helpguide.org/elder/advance_directive_end_of_life_care.htm)</p>

2019

<p>When my mother was terminal and on hospice care, she took a clear turn towards the end of life and I was required by the nursing facility to sign paperwork when she moved in stating that there would be only palliative care, with no active medical intervention (including antibiotics, etc). At that time, the staff did state that if she broke her wrist and was in pain, they would have it set if indicated for comfort. </p>

<p>These situations have shades of gray at times. When my 90 year old father with severe memory loss who has been DNR for a decade had pain and an initial x-ray revealed a possible hip fracture, his primary Doc said that as he was ambulatory, they would want to repair the hip. I was so relieved when we weren’t dealing with orthopedic surgery in a man who wouldn’t be able to remember why he was in pain. He is though, as lucid as one can be without much working memory and is able to express how much he enjoys himself every day. </p>

<p>I remain clear about allowing nature to run its course, as this is what he would have wanted. While his hip was not fractured, one is extremely damaged and somehow with complete bone against bone, his acute pain resolved in hours and was unrelated to what was obviously a long-standing condition. It does give me vital information about possible sink holes for his long term comfort/quality of life though, which confirms a fairly passive approach to medical management. Most people I know with 90 year old parents are in this mode.</p>

2020

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<p>I don’t question travelnut’s decision about her mother’s care. I’d make the same decisions.</p>

<p>I’d just like to clarify the definition of palliative care as I have heard it explained. Palliative care is care that is directed toward making a person comfortable, improving their quality of life rather than curing them. But it might include antibiotics in some cases, and it might include surgery in some cases. </p>

<p>So for example, if a person has a terminal cancer, in palliative care they might have surgery to whack out some of a tumor. It’s not going to cure the cancer, but it’ll stop a big tumor from obstructing some bodily function.</p>

<p>I’m just saying this so that people know that when they choose palliative care, specialists can be aggressive about treating symptoms like pain, shortness of breath and nausea. It’s not just ice chips. The palliative care team does what they can to make the dying person’s remaining life as good as possible.</p>