Parents caring for the parent support thread (Part 1)

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1801

<p>Rocky - I never talked to my parent’s as much as you, but now, that I’m calling and seeing them so often, they quite honestly don’t remember if I called unless it’s within the last hour or so. Even then, it’s questionable. But, I’m at the position where all of the sudden my parent’s need me. Unfortunately, they moved here hoping not to be a burden and, at least my dad, stubbornly resists the idea of needing me. </p>

<p>LasMa - I feel for you and know this is what it will be like with me and my brother. Lets hope they just need more time to process the information. I do think, if they want aggressive treatment, they should come see your dad to make a decision. When was the last time they saw your parents?</p>

1802

<p>Wow- appreciate all the wisdom here. </p>

<p>LasMa- it is very interesting how your brothers want you to process all the information and pass it on to them. I do think though, that thorough discussions about what to expect will be helpful to everyone, especially you as you walk the family through this.</p>

<p>I would want to be able to talk with my brothers about how those treatments would impact an already compromised body and mind, what the days will be like, what the best possible treatment outcome is and how some other health issues will come into play in terms of managing the treatments. In other words, what are we fighting for? If the train is going to the same station, perhaps they would rather their loved one take the scenic route. I would empathize with their sense of poignancy, keep your matter of fact tone, gather information about how comfortable this can be and how quality of family time will likely be increased by not creating further stress on the body. At a certain point, journeys to medical appointments alone, never mind what happens there, are just too much. </p>

<p>I agree that particularly if they haven’t seen recent declines, a visit makes sense and perhaps ultimately a meeting (or conference call) with the Dr. Sorry this is so complicated, though more information is everyone’s friend here. Hopefully, ultimately you will be able to support each other through these tough decisions and honor your parents’ wishes. Sometimes relatives need help to see that the gift is opting out with them, not forcing a fight on the weary.</p>

<p>Best to all of you.</p>

1803

<p>LasMa- sorry you are dealing with potential conflicts about the treatment. Hopefully those of you on site can make the decisions and not have to fight far away family over it!</p>

1804

<p>LasMa, I think I would let your brothers own their own quest for more info. You’ve shared the info you have that lead to your and your Mom’s decision. If they need other info, they should go get it. And that should include a face to face visit as well… One dealing with everything needs to establish boundaries for self-care , sometimes boundaries against the people to whom we look for help.
(Awkward wording to not be judgemental against LasMa or her brother’s, just sayin’ generic advice when I want to say "Tell your brothers to do the work before they do the decisions because YOU HAVE done the work and YOU HAVE the right therefore to make the decision.)
I say this because my bro held me up on a couple of events (like not getting Mom a care taker a long year before the drud hit the fan). Live and learn.</p>

<p>GTAlum, yeah, I talk to Mom every day, but the times I talk twice a day…usually she doesn’t remember that I’d already called. It is hard to keep calling somedays.</p>

<p>Rockymt. I think that is a good thing… your mom able to talk to caregivers is a better blessing for her. I expect you talk to the caregivers when there are problems. I have heard that this is a common experience … that the AL place becomes the “Family” when the dementia erases who the actual family is. Hurts, but it is a known trend.</p>

<p>preironic, well, yes, I do have a laptop, and the magazine example was a bit of an exaggeration … but it came from two years ago when she was trying to get me to cancel some scam she had fallen into (I had POA, but not guardianship and she was still able to be sneaky) She would insist I pretend to be her on the phone instead of just saying “Talk to my D” because she couldn’t answer their questions to identify herself. I got a rash against doing that kind of end around. No one would mind or “catch” me because my brother and I are the only heirs and he would rather I took care of everything and wouldn’t care if by doing so I took advantage. He knows I wouldn’t anyway. (I hope!!!) </p>

<p>montegut, how are you doing these days? Is the numbness begining to wear off and you are doing OK? is estate planning even started? </p>

<p>travelnut … not only the wisdom, but the shared journey is really helping me. I have burnt out my DH on Mom (who he really never liked because he is honest and she delights in lies for no reason) So it is nice to have a place to whine and ask for advice.</p>

1805

<p>Thanks, eso. I met with the attorney and there are apparently two possible options for us, one easy and inexpensive, and the other more expensive and difficult. I think we will need the difficult one, since my brother’s estate will be involved, but the attorney wants to work with my attorney brother, who is a procrastinator. Argh! </p>

<p>But, I’ve been busy with moving son into new dorm and getting him ready for school, and husband and I will drive to Houston to clear out the small storage unit I put Mom’s possessions in from her nursing home. Most will be donated, but there are some items, like the TV I bought her last year, that we will keep. </p>

<p>I emailed my brother that I was coming and would like to see him, but haven’t gotten a response yet. It’s likely I won’t see him, as the boys have started school and sports, etc.</p>

<p>I am welcoming the fact that I will no longer have to travel to see Mom, will not have that financial burden, and husband is happy that I will be homebound and even suggested we keep the two feral kittens I’m fostering right now. </p>

<p>I am in “throw away stuff” mode right now and hope to take full advantage of that motivation, throwing out not only Mom stuff but inlaw and our old stuff.</p>

<p>Now that Mom is gone, I no longer have to hold on to three different sizes of nightgowns and outfits for physical therapy, things I have kept for years just to not have to repurchase every time a physical condition changed. </p>

<p>My generation is now the grandparents and we are all hoping to learn from the experience we’ve had with dealing with Mom. What we want our children to do for us and what we don’t want to put our children through.</p>

<p>I’m happy to keep in touch with y’all to see if there’s any way I can help and to also come to for advice and commiseration.</p>

<p>Take care, y’all, and keeping you all in my prayers.</p>

1806

<p>Montegut- hearing your experiences with your mother has been meaningful to me. I wish you and your family the best as you re-group. I also appreciate the way you can acknowledge that just as your mother is no longer struggling, your life is now free of certain burdens. I share your wish to translate what we learn tending our parents into a better process with for our children. </p>

<p>Esobay- agreed about the value of a shared journey. My mother died over 7 years ago, and the way she handled things was a superlative example. I think she did the last two years of her life with a terminal illness “better” than any time that preceded it. She was direct and deliberate, without her earlier propensity for sweating the small stuff. She appreciated everything and noticed what others were doing to help her, even though she could be a “cup half-empty” person previously. My experience with her has translated into unsought opportunities to connect with others and greater clarity about what I want my family to know. This forum is a great place to brainstorm, hear ideas and vent as needed. My father has severe memory loss at almost 90, but recognizes me and my family. He is happy with his living arrangements, describes himself accurately as easy going and optimistic, and for now, is in good health otherwise. I know that this is a time to be grateful for, as any day, things could change. At that point, I’ll start re-reading this thread for relevant specifics and posting the big questions.</p>

<p>Rockymtnhigh- I know what you mean about calls that feel more distant. Dementia is usually worse as the day wears on (sun-downing) and I have seen that my father’s memory loss has impacted his ability to initiate conversations. He can follow one on one, participate appropriately, but rarely starts on a new topic. I think it is too much executive function for him as the disease has slowly progressed. There is day to day variability with some of this also. You are spot on about the loss of ability to keep track of time or when the last visit or conversation was. I have found that once that happens, discussions about when was the last time I did x, y or z, also are not brought up. Connections with daily caregivers are a big plus, and in part are strengthened by the fact that the here and now is where people with memory loss and dementia live. I don’t think my Dad is capable of ruminating about much at this point, though it can be hard to tell.</p>

1807

<p>LasMa, </p>

<p>It matters how you present information, because people are loss-averse. So I suggest that you present the information to your brothers in a way that highlights what your father will lose if he has the treatment. Not lying or misrepresenting in any way at all, just saying what it will cost him physically if the treatment is done.</p>

<p>"Dad’s doctor says he should not have the surgery.</p>

<p>“We can manage his condition by <pain medication,=”" some="" kind="" of="" palliative="" surgery,="" or="" whatever="" the="" doctor="" recommended="" to="" you="">.</pain></p>

<p>“If Dad has the surgery, he will be suffering significant pain for X weeks. He’ll need <a drain,=”" diapers,="" a="" urine="" bag,="" whatever="">…For the rest of his life, he would <be incontinent,="" or="" whatever="">… It’s very likely that <he’ll get="" an="" infection="" which="" will="" cause="" a="" longer="" recovery,="" whatever="">… There’s an X% chance that he will have a heart attack during or after surgery because of his congestive heart failure… He won’t understand what is going on, and that will cause <worse recovery,="" difficulty="" for="" the="" nurses="" in="" managing="" his="" pain,="" surgeon,="" whatever="">…"</worse></he’ll></be></a></p><a drain,="" diapers,="" a="" urine="" bag,="" whatever="">

<p>Again, people are loss averse, and it makes a huge difference what they think of as the default condition. So present the no-surgery as the default, since that is what his doctor recommended, and highlight what he stands to lose if he does have the surgery. Of course be perfectly honest.</p>

<p>I don’t think it’s right to put doctors in the middle here by having them talk to one family member, then a different family member. One family member ought to be in charge of talking to the doctors and relaying the information, completely and honestly, to the other family members.</p>
</a>

1808

<p>Lasma
It does not seem fair that you have to go and get more info. There is no reason why they can not do it. Tell them that somethings have come up and you will not have the time.
It will take them quite a bit of time to get all the info they want and in the process they may come to appreciate all the time that you put into gathering info in the first place!</p>

<p>Anyway, while they are doing this, it allows for your dad to follow his dr’s advice of do nothing (nothing but pain relief I’m guessing) and what you and your mom want.</p>

<p>I am confused as to why it seems from your post that your brothers have a greater say in what happens to your dad than you and your mother. Why would their wishes overrule what you and your mom want?</p>

1809

<p>LasMa, I wish you luck in convincing your brothers for the treatment you’d like your Dad to (not) have. I like travelnut’s explanation- your Dad needs and deserves the ‘scenic route’ and your brothers shouldn’t be so selfish. So hopefully your brothers will understand. </p>

<p>My brother and sister were all about the “get mom treatment, she should be doing PT/OT”; when she can barely sit up WITH help. When they came out for a visit, their eyes were opened and they FINALLY understand. Mom is OLD. Mom has dementia and being in the ICU and the hospital at the beginning of the year caused things to go away and they will not come back. </p>

<p>My Mom’s Medicaid was finally approved. We applied the first time in February and it was disapproved in April because she had a life insurance policy, if cashed out, worth $2800. So we went through changing the beneficiary and resubmitted in end of May/June. Finally heard it was approved today. Of course I was told that we have a 7 day Medicaid penalty because I used Mom’s SS to pay for my brother and sisters flights to come out and visit her. It cost $1600 for 2 RT tickets. She wanted to see them and none of us kids had the money for tickets. So I used money from Mom’s checking account. </p>

<p>Does anyone know how the penalty stuff works? I’m assuming that I take the $8000 for the nursing home per month charge / 30 days and multiple by 7 to get what we’ll have to pay the nursing home. The one person who can answer this question is on vacation this week, so I expect to hear from her next week sometime. I hope it won’t be too bad. I knew this was going to happen, but at the time, H and I were getting furloughed from work and losing 20% of our pay and I wasn’t sure how we would pay our mortgage, let alone 2 tickets. </p>

<p>My H is upset that we will be paying for my bro/sis tickets (essentially). I know I won’t get any money from my brother as he’s on SSI and only gets $800 per month. My sister and BIL are notorious for never having any money so I don’t think we’ll see anything from them. I don’t care, it was worth it to Mom to see her other kids. I’m pretty sure the nursing home will take payments, so that’s not an issue. Just wondering if there is anything to the math or is it more complicated than that?</p>

<p>Thanks for letting me vent. Here’s hoping all on this board has smooth sailing and happiness. :)</p>

1810

<p>Chuck- just to confirm, you are saying that your Mom paying for her kids to come visit her was disallowed as an improper expense? Would it have been disallowed if she went to see them? Is it the expense or the person on whom the funds were spent?</p>

<p>Thanks for sharing so we all can make more informed decisions</p>

1811

<p>Everyone, thank you so much for your support and your great ideas. It is so helpful to be able to write here and get such thoughtful feedback.</p>

<p>I think it’s probably not so much that my brothers oppose me, but they’re hearing everything second-hand, from only one source, and are forced to trust that I’m giving them all relevant information. For example, they wanted me to ask the urologist exactly what the risks of cystectomy are. That specific information doesn’t matter to me. Two doctors whom I trust have told me that it’s unacceptably dangerous, and that’s enough for me. But then, I had the advantage of having those conversations directly with the doctors; I saw the expressions on the faces, and heard the tones of voice, which gave credibility to the statement. My brothers haven’t had that benefit; all they have is my account of the words that were said.</p>

<p>And to be fair, I know that they have Dad’s best interest at heart. They’re just not sure whether I’m exaggerating on the one hand, or holding back on the other; one may even think that I’m giving them slanted information to get them to agree to the decision I want. I also think they are having a hard time accepting that there’s not a better way out of this, and may even halfway hope that if I quiz the doctors enough, they will unveil the hidden key to the happy ending. </p>

<p>I did have a follow-up conversation with the urologist today, though, and I’m going to email that info to my brothers. Then if that’s not enough for them, I believe I’m going to tell them that I have all the information I need, but if they don’t, I’m going to invite them to come here and meet with the doctors themselves, and get ALL of their questions answered. (Fang, what I’m envisioning is a family meeting with the doctor, so that he only has to say it once, and everyone hears the same thing at the same time. No doctor-in-the-middle. Do you think that’s out of bounds?) I also really think they ought to have a face-to-face with Mom, to assure themselves that she knows what’s going on and understands the choices. </p>

<p>One other not-so-nice aspect to this is that one of my brothers and I have a trust problem, and some of this is CYA on my part. What I really, really don’t want is, a year from now or 5 years, for there to be second-guessing about what I’m telling them, or wondering why I didn’t ask this or that question. Or if, down the road, Mom says that she actually wanted aggressive treatment but I wouldn’t allow it (and it’s possible she would do that), they’ll know that’s not the case. If they hear it directly from her now, there won’t be doubts later. </p>

<p>bookreader and eso, I actually don’t have to be doing any of this. I am Dad’s POA, so I could make a unilateral decision which no one could dispute unless they wanted a court fight which they would lose. What I’m trying to do is preserve the family by working toward consensus; years from now after Mom and Dad are long gone, I want to still have brothers. At the same time, I do feel that I have done more than enough, and I agree 100% that if they need more, they’ll have to take on that responsibility for themselves. Thank you for the validation on that.</p>

<p>Fang, I hadn’t thought about that loss-aversion orientation. I will keep that in mind as we go forward. Thank you.</p>

<p>travelnut – “scenic route.” Thanks for yet another nugget, and a helpful way to think and communicate about this.</p>

1812

<p>(Fang, what I’m envisioning is a family meeting with the doctor, so that he only has to say it once, and everyone hears the same thing at the same time. No doctor-in-the-middle. Do you think that’s out of bounds?)</p>

<p>No I don’t think that’s out of bounds at all, and I’m sure that the doctors would agree to it. What I think would be out of bounds in your situation (and I’m sure you agree) would be one family member talking to the doctor, and then another family member, and then another family member… The doctors owe your family a clear explanation of exactly what the situation is with your father, but they shouldn’t have to keep giving the explanation to different family members.</p>

<p>What is the <em>best</em> case if your dad had the surgery? And if he doesn’t have the surgery, is bladder cancer going to be what he dies of? It sounds like he is medically fragile.</p>

<p>"I also think they are having a hard time accepting that there’s not a better way out of this, and may even halfway hope that if I quiz the doctors enough, they will unveil the hidden key to the happy ending. " This is a brilliant observation. It’s hard (for them, for anyone in the same situation) to come to the decision that there is no option that is the good option that we wish existed. So I think your idea of having your brothers and you meet with the doctors is a good one. The doctors can then deliver to them the somber news that your father is not a good candidate for the surgery.</p>

1813

<p>Thanks, Fang, glad to hear that a family consult wouldn’t be an unreasonable request. It may be the best way to resolve this. I wouldn’t even consider suggesting that each brother call the doctor individually. I’ve always been the information clearinghouse, and that’s how it will stay.</p>

<p>Dad is very fragile, a 7+ on this [Clinical</a> Frailty Scale](<a href=“http://geriatricresearch.medicine.dal.ca/clinical_frailty_scale.htm]Clinical”>http://geriatricresearch.medicine.dal.ca/clinical_frailty_scale.htm). (I had no idea there was such a thing until a CC friend told me about the concept.) If he had the surgery and survived it, he’d be a cancer-free guy with heart disease, kidney disease, dementia, and a broken ankle, among other things. If he doesn’t have the surgery, it’s a little less clear. Bladder cancer apparently can stay inside the bladder for quite some time, so it may not actually be life-threatening for years – or it could kill him in 6 months. No way to know unless he has surgery and biopsy, which I think we’ve ruled out. But even if the cancer stays inside the bladder and doesn’t kill him, it would likely cause problems. So worst case if he doesn’t have the surgery is that he has years of pain and other awful problems, but doesn’t die. Or he could have a heart attack next week. Or he could disobey orders and attempt to walk on his broken ankle and fall and crack his skull open. He’s a complicated case. :rolleyes:</p>

1814

<p>Chiming in a little late, but at a certain point, what I’d be tempted to say is: “here are the decisions we (whichever 'we” is appropriate) have made. If you want to come see firsthand and speak with the docs, I’m fine with that." Inform them and put the ball in their court. Nicely.</p>

<p>My heart with with everyone here. There is only so much one sibling can do that pleases all. </p>

<p>Haven’t spoken to my own mother in 3 or so weeks. I call, leave messages (we have a system, where she updates her voice mail message daily, so we know she’s up and about.) But she won’t call me back. She’s angry at me for something that, evenly and reasonably put, is really her fault, her choice. I just need an occasional opp to pop in here and mention her. If I describe the whole situation, there is little anyone can suggest to change things. (A psychiatrist once emphasized that to me.) </p>

<p>I do have to say, the troubles with her make me resolute not to do this to my girls, not to fall into the same behaviors and defenses. Taking stock. Now, while I can. Making a few changes I should be making. Easy stuff- meeting with the attorney to go over and update plans, decisions, documents. Working on the house so it keeps its value, should we need to sell. Cleaning out the attic of the same useless stuff we all accumulate. Feels proactive.</p>

<p>Best wishes to all.</p>

1815

<p>Somemom- “Chuck- just to confirm, you are saying that your Mom paying for her kids to come visit her was disallowed as an improper expense? Would it have been disallowed if she went to see them? Is it the expense or the person on whom the funds were spent?”</p>

<p>I don’t know. At this point all I have is a verbal from the Social Services person. I’m hoping the paperwork will come today that explains everything. But from what she was telling me- the money spent on plane tickets was not an authorized expenditure. That this expense will count as a “gift penalty” (?). As soon as I see the paperwork, I’ll post again.</p>

1816

<p>Family consults with doctors are not uncommon. Then everyone hears the same thing. How they interpret that is another story. I am very medical; my sibs are not. When my brother started coming to the doctor visits with my dad, it was clear that he also expected the magic cure, when I knew we were falling down the hill. It was hard for me to not be impatient with my brother when he just wasn’t seeing the big picture.</p>

<p>It can be hard for non-medical sibs to do internet research when they really don’t understand all the dynamics of medical procedures on aging, frail people. What works for someone who is middle age may spell major pain, delayed healing, and poor quality of life for someone who is quite elderly. And once your parent has dementia or Alzheimers…another dimension is added into the decision.</p>

1817

<p>Las Ma, if your dad had the surgery and survived it well he’d be a guy who might be cancer-free (and might not; cancer spreads), who had heart disease, kidney disease, dementia, a broken ankle and some kind of external urine pouch, right? Pouch plus dementia sounds difficult, ignoring all the other issues.</p>

<p>But if he didn’t have the surgery, he might or might not have future bladder problems, which could be treated if he had them? And his cancer might spread (if it hasn’t already) but it might not spread in the time frame we’re concerned with?</p>

1818

<p>LasMa–are you and your brothers open to palliative care? Keeping your dad comfortable without invasive procedures? This might be the time for all of you to talk with the doctors, including the urologist and geriatric physician if you have one, and develop an end of life plan.</p>

<p>That may sound cruel and unemotional, but if all of you understand what you will or will not do for your father, you will have some peace. Heroic measures for very old, ill, demented parents does not prolong a life of quality.</p>

1819

<p>I was researching palliative care recently, and I learned that palliative care does not mean just sitting back and reacting. Dentmom4 talks about palliative care and keeping LasMa’s dad comfortable without invasive procedures, but palliative care can be aggressive in eliminating pain and discomfort, and it might involve invasive procedures.</p>

<p>For example, if a person has cancer that is incurable, nevertheless surgery can be an appropriate palliative measure to whack out some of the tumor, just because tumors growing inside a person can impinge on other organs and cause pain. The patient won’t be cured, but they’ll be more comfortable.</p>

<p>When you think of palliative care, think of aggressive palliative care, that goes after the things that would cause pain or discomfort for the patient. It’s not just sitting around with ice chips.</p>

<p>Should LasMa and her family decide on palliative care for her father, that palliative care might eventually include some kind of surgery to remove some of the growths in her dad’s bladder.</p>

1820

<p>That’s interesting, Fang, I did think that palliative care was essentially ice chips. It’s been suggested to me that I talk with a palliative care person (doctor?), which I think it’s becoming obvious is something I need to do. </p>

<p>A couple of posts up, your description/prognosis of the surgery is spot-on. OTOH, if he doesn’t have the surgery, there will almost certainly be bladder problems down the road, maybe a year or so, which may or may not include the cancer spreading, may or may not require intervention, may or may not be really painful. There are so many ways this could go. My mother and I have a dream of no more invasions into his bladder and especially no more surgeries, and I don’t know if that’s going to be possible. I hate to think that he’s doomed to go under the knife on a regular basis for the rest of his life. But if, as you say, it’s palliative surgery, then that might be easier for us to accept. </p>

<p>dentmom, I’m totally open to moving into an end-of-life care mode. One of my brothers is really, REALLY struggling with this whole thing, though. He’s extremely uncomfortable with the idea that we’re deciding whether or not to let our father die; “playing God” is how he puts it. By that, I think he means we should go all-out with the most aggressive treatment. If Dad then dies, well, it’s not because we didn’t try, and we owe him that. At least, I think that’s his unspoken thought process right now. (My feelings are much closer to what’s been expressed here; that at this point, quality of life is all that matters, and what we owe him is the most peaceful life we can give him.) But he’s still at the stage of trying to wrap his brain around it. There’s no huge rush to make a decision. I hope that he’ll soon begin to think about quality of life as well, but it he doesn’t, then I’m going to become very insistent that he meet with the doctors.</p>