Parents caring for the parent support thread (Part 1)

Parents Forum Parent Cafe
1781

<p>GTalum- I am trying to sort out your question and respond with info based on my experience as a daughter, not as a physician or lawyer. Your brother is not convinced that your parents said they would not want nursing home only quality of life if there were an alternative or he is not convinced that opting out of treatment can be a viable possibility? There is so much knowledge, education and cooperation required as every family navigates this stuff. Of course, ultimately you want everyone to be on the same page, but I have seen families where it is not possible and the wishes of the elders plus medical parameters prevail. </p>

<p>Leaving your brother out of the equation for now, have you spoken with your folks recently about any thoughts they have on this issue? It sounds like your father could sort this out, but perhaps it is a dilemma for your mother. Are they DNR? That may cover the biggies, but the antibiotics and “smaller” interventions are where a lot of family members and sometimes medical people get bogged down. It is usually “easy” to administer antibiotics, but then context becomes very important. Some research suggests that a significant portion of Alzheimer’s patients contract pneumonia near the end and that administering antibiotics is actually detrimental to their quality of life, while not extending it significantly. Of course, there is no one right answer or one study only to evaluate, but it’s an example of what gives us caregivers a lot to consider. </p>

<p>I’d ask the Dr in the abstract how he likes to proceed with treatment decisions and what documents should be on file in his office and the hospital your folks are likely to use, ensuring s/he knows who is health care proxy, etc. Docs usually like to consolidate family contact apart from emergencies to one person. I’d feel out my parents if it can be done gracefully before the appointment, to determine if a meaningful conversation can be had. If the attorney mtg. does not pre-date the Dr. meeting, I would ask the Docs how to get any additional paperwork or legal information to them. If the conversation with the Doc can be useful in laying groundwork, that is one thing. If it is going to reflect considerable confusion, which the legal papers or past conversations do not, that may be another. If you are wrapping up the meeting with the Dr. and feel that there is additional info better shared later, ask how to best get in touch to “follow up”. </p>

<p>Legally, you want papers up to date and accurate for the state they are living in now. The attorney can give you full understanding of exactly what role designated PoAs, health care proxies, etc. can play, as well as what it means if those positions are shared or designated to first one person, with additional back ups if #1 is not able to serve. They should be able to tell you ways to increase the likelihood that the medical preference docs will be observed. </p>

<p>This is a process and it will take patience to work through the bureaucracies involved, as well as the relatives. I found it helpful to take a one step at a time approach, trying not to get overwhelmed or overwhelming to those around me. Good luck with these transitions and sorry for the length of this reply. Need another cup of coffee to be more concise!</p>

1782

<p>Thanks all, very sage advice. And no travelnut, your advice was just the right length to discuss this sensitive topic.</p>

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<p>My brother’s view is more of an existential one. He doesn’t believe anyone knows what they want until they are in the situation even if they can’t communicate their wishes at that time. There is not sense that it should be “God’s will” as he, and my parents are atheists. So, even if my parent’s tell him directly that they do not want long-term care in a nursing home, I’m not sure if it would help. Since we may be on different pages, despite their expressed wishes, I was hoping to create allies in the lawyers and doctors. But of course, he may perceive I’m just trying to manipulate the situation. </p>

<p>However, I do feel like he is opting out of decision making. He visited 1 month ago when my parent’s got here, but has not called or communicated with me since. I have continued to send e-mail updates on their situation without response. </p>

<p>I and they are comfortable having this discussion, and we will make sure to do that again. But my brother and I currently, and will in the future have shared POA.</p>

1783

<p>Hi, I was a visitor to this thread about nine months ago when my dad died. Since then, life has been fairly calm, but this weekend, my mom fell and broke her hip. She is 91 and on coumadin, so the subsequent surgery was high risk, but she came through it okay. It looks like a very long road back, however. Have any of you dealt with this? Can a relatively healthy 91 year old really make a full recovery from a broken hip? The change in her in the past 48 hours (from pre-fall to post-surgery) is pretty scary.</p>

1784

<p>In otherwise good health, yes!</p>

<p>An acquaintance broke her hip at age 90 or so, but she was a tough old bird and eventually walked without her walker and lived to be 95.</p>

1785

<p>My ex-MIL fell and broke her hip at age 90. They ended up doing a hip replacement, and she did have an infection afterwards. But by about 6 months later she was getting around with a walker. She was in AL when it happened and was able to go back to her AL arrangement. She is still there at 94, living in a little two room setup with a bedroom & sitting room/mini-kitchen (no actual cooking appliances). She has taken a couple of plane trips since, one up here for D2’s high school graduation a couple of months ago. She was using a walker before it happened and is still using one, but she gets around. So while it does not always go as well as it did for her, in that case it was a bump in the road that she recovered from.</p>

1786

<p>my mom of 87 broke her hip while falling in her house about two years ago, she has advanced Parkinson’s. The hospital highly recommend a hip replacement, but we did not want to take the risk, so they put three pins(screws) in her hip to stabilize her. At the time of the fall, she was semi-immobile anyway and after that she was bed laden and need to use the wheel chair all the time. </p>

<p>She is still alive right now, even though she is in hospice for over 5 months.</p>

1787

<p>artloversplus, I’m so sorry to hear about your mom. It sounds like she’s had a difficult time. My mom had a rod put in. The doctor said a hip replacement wasn’t necessary, so I guess I should be grateful for that.</p>

1788

<p>I haven’t been through it, Mary, but welcome back. </p>

<p>Update on my dad’s cancer situation: I decided that maybe my conversation with my brothers would go better if they at least had a few days to mull over the new information, rather than just hitting them with it in a phone call. So last night, I emailed them a very neutrally worded report on what the doc said, and also Mom’s response. I was extremely careful not to include my own thoughts. At the end, I suggested we have a conference call later this week. </p>

<p>Then today I talked to Dad’s primary doc and she strongly recommended we not treat the cancer. She assured me that palliative care and hospice would be available when the time comes.</p>

<p>Meanwhile, both brothers responded to my email; one said, “Well, we knew this day was coming.” The other – the one I was afraid would want to do all possible treatment no matter what – said, “My only preference is to make sure we have the primary doc’s recommendation, and to discuss if there’s any other counsel that makes sense.” So it sounds like they’re both are open to all options, which is at least one good thing.</p>

1789

<p>LasMa, I’m so glad your neutral email received positive responses. It definitely sounds like everyone is willing to be open-minded and reach the best decision once all doctor recommendations are in.</p>

1790

<p>Mary, Thank you for your good thoughts. Actually, my mom is doing BETTER in the hospice than before. She is taking less medications(other than her Parkinson’s medication), she is alert, with higher spirit, less dementia, communicating much better and is really in great physical and mental condition, although she is immobile, incontinent and has swallowing problems like advanced Parkinson’s patient all do.</p>

1791

<p>Decisions on when to treat or with-hold treatment and medication are very difficult. They evoke so many emotions, memories and can trigger responses from family members based on long established patterns and behavior. The desire to make the “right” decision for our loved ones sometimes comes with a great burden for all of us. The best that we can do is to gather enough information, take a deep breath, and try to present the case with facts and logic. Well done LasMa, I’m glad that your brothers will be supportive.</p>

1792

<p>Social Security PITA … I don’t have a resolution yet, so anyone with information could chime in, anyone wanting the outcome … well, keep reading, I’ll post if I ever get it done.</p>

<p>I am conservator/guardian for my mom. I went to SS and got the agent to work with me to fill out the forms so that I could direct her benefits. I argued with the lady helping me a little bit about their rule that (as SHE explained it to me) … I HAD to have a joint bank account with my mom having signatory authority. I did not want that because she had already been taken to the bank and been cleaned out before. I have a trust account set up for her where I wanted the money. It has her name on it, but she can’t sign. NO NO NO, that won’t work the lady says. Has to be a joint account with just you and her. OK, I had one of those, that I was hoping to close, but I’ll get her SS benefits put there.
Two weeks later, I get the authority letter AND a booklet that says “You must NOT have a joint account with the beneficiary. You must have an account with her name on it with no signatory by the beneficiary”.<br>
GAHH… hold time is 45 minutes…(they will call back). Wait time at the SS office is over 3 hrs without an appointment unless you are there at 7:30 in line ahead of when they open. Appointments can be had … for late October.
Anyone deal with this with some tips for me?</p>

1793

<p>esobay - What I did was help my mother set up an on-line SS account and through that account, directed her payments to go into her banking account (for which my brother and I are joint owners). I did this with my mother present to satisfy the legal questions asked about permissions etc. It was quick and easy and no hard questions asked that I can remember. Am a huge fan of on-line accounts for the elderly and their caretakers. You might be in too deep now to do this, but maybe this might help for others.</p>

1794

<p>eso, I am meeting with the estate attorney on Thursday and hoping to ask what is the best way to handle the bank account, SS, and pension “in case” (which I am in effect doing), I have to step in and take over. If I need to be a joint owner, I have to get my dad to “sign on” now while I think he is still competent to make decision. </p>

<p>In the meantime, I had an emotionally exhausting day yesterday. I accompanied mom to her new PCP who is a Gerontologist at a major medical center and academic institution. The visit accomplished what it needed to. It gave mom her “official” diagnosis of Alzheimers (could only name about 4 words that began with “F” during 60 seconds). Mom took it in stride, but to be honest, there doesn’t seem much cognitive processing at all. She did agree to a DNR. We came back to the apartment and dad was initially upset as we were gone 1 1/2 hours (really couldn’t deal with her gone for that amount of time). He was then upset about mom’s diagnosis ("I am the demented one! What are you doing with dementia!), about the recommendation that she not drive, and much confusion about her change of meds (the gerontologist agreed to stop the 2 cholesterol meds and tried to simplify the BP meds), and “didn’t agree” with the DNR. The visit accomplished what it needed to, but the aftermath was emotionally wrenching for me, I can’t imagine how it was for them.</p>

1795

<p>GTalum
I am so sorry for the day. You did great. You did a lot. And you have twice the effort with two of them.</p>

<p>I, too, love the on-line stuff. I did her banking for quite a while with on line. But SS has a BIG notice on it saying don’t log on if you are not her, and since I don’t live in town, they could prove I logged on when she couldn’t be there. Otherwise I would be sort of tempted.
But only sort of, because I don’t even pretend to be her to cancel her magazine subscriptions; I fax the POA and say you WILL talk to me and you WILL blah blah blah. No need to get tangled up with lies. I am not good enough at it!</p>

<p>By the way, wait time for call back from SS was 27 minutes… 2 hrs ago. guess I’ll try again. gak</p>

1796

<p>Sorry haven’t been on for a while, but glad I saw the last few postings and hope I can help out.</p>

<p>When I became my Mom’s power of attorney, I set up a joint bank account, both her and my name, and I wrote all the checks, paid the bills, etc. This was while she was still living alone, before moving to assisted living, so once she went to assisted living, I just had all the bills sent to my address. Once I had that joint account, my mom never got any checks to sign, so I didn’t have to worry about her buying stuff. </p>

<p>As I prepared to move back to my hometown with my son and leave my Mom in Houston in the assisted living facility, I went over to the Social Security office there with not just my Power of Attorney document in hand, but also a note from the treating physician at the assisted living facility saying Mom was not capable of handling her affairs not just because of being wheelchair bound, but also, her mental status (bipolar).</p>

<p>It took a while, but I got a letter naming me as her representative payee. I took that letter to the bank and we opened an account that read MY NAME for MOM’S NAME.</p>

<p>Because we were private paying her assisted living, and later, nursing home, I would let her checks accumulate until I had enough to pay the monthly bill, usually took four months, and wrote her bill for that month from that account.</p>

<p>At the end of the year, I would have to fill out a Representative Payee Report. At first, it was a paper, but later, they went to online. I would total the checks to the facility, and the balance would be what I had saved.</p>

<p>Every year, I would get a report, noting the previous year’s saving, the income Mom got from that year, and again, I had to account for every penny.</p>

<p>Now, you can use the money for things like toiletries, medicine, groceries, but this is the way I chose to use the money and it made the accounting so much easier.</p>

<p>Upon my mother’s death last month, the bank freezed said account, and even though the money is still in the bank, I do not have access to it. It’s about two months’ worth of benefits. Social Security did send me a letter stating that the money belongs to her estate and we could use it for whatever we deemed fit. However, we have to open succession and open an estate account, and I’m hoping, at that point, the bank will take the letter and transfer the funds into that account. Same thing has happened with my Mom’s Veterans Beneficiary fund account, bank frozen, I have a letter, but waiting for the estate to get started.</p>

<p>Luckily, I still have the original joint bank account that I set up when I became power of attorney, and I use funds in that account to pay expenses that are still coming in after her death.</p>

<p>I’ve already met with the attorney, but he’s consulting my brother, who is also an attorney, as to how we will proceed. As usual, waiting for the brother to get things going.</p>

<p>All this does take a lot of leg work and waiting in Social Security and Veterans Affairs offices, but it’s well worth it, and once you have the account set up, you’re good to go!</p>

<p>Also remember, once your parent passes away, there will be no more Veterans checks, Social Security checks, yet bills will still be coming in, so make sure you have funds in reserve to keep paying daily bills that still come in after they pass away. Depending on when your loved one passes away, you may actually have to pay back Social Security funds back that have already been deposited, which is why I kept money in her benefits accounts, even though we wound up being entitled to keep that money.</p>

1797

<p>LasMa, I’m glad you talked to your dad’s primary care doc. </p>

<p>I also find it interesting that the surgeon initially was recommending the surgery, and only when you asked him what he would choose if it was his father did he admit that your father was a poor candidate for the surgery and post-surgery complications would be likely. Hmm.</p>

1798

<p>Esobay - do you have a laptop? Can you do this when you are visiting? My take on a lot of this is that if you are not doing anything wrong they are not going to worry about you. We are putting her money in her account. I’m changing the magazine addresses so the magazines aren’t thrown away and I can take them to her. As long as you are reasonable and careful, you need to make your life easier on the little things. I don’t pretend to be my M on the phone, but changing her address on-line so that her small bills can be taken care of seems like a favor for everyone. I certainly use that POA as much as I can, but I don’t think the magazine people are interested.</p>

1799

<p>today i realized i have been so busy with work and overtime that i have not talked with my mother on the phone for 2.5 weeks. i think this maybe a lifetime record, unintentionally. i used to call her every weekend my whole adult life until the past year when she developed dementia. she has called me every other day for the last several months, so i no longer call her on the weekends. she has a one hour a day care giver from an agency that visits her daily and they are really good about reporting issues. i was there 2.5 weekends ago to visit (2000 miles away). so, i called tonight driving home, she talked with me - not at all commenting 'why haven’t you called?'etc . actually she was not that interested in talking with me- talked about a few things that she and the caregivers did and talked about, told me about her inlaws but not much else. she did not seem out of sorts. maybe she is getting used to the caregivers finally after 5 months of resisting them and time is no longer in perspective with the dementia. i feel like a mother who’s kid is at college and now does not need me… life is strange. anyone else experience this shift?</p>

1800

<p>I talked with my brothers tonight, and they weren’t so ready to sign onto the “no treatment” option as I had hoped. They seemed to blow right past what the primary doctor said (strongly recommend against treatment), and Mom’s clearly stated desire (let nature take its course). They want me to get much more information from the urologist about exactly what would happen if we don’t treat the cancer, so that’s what I’ll do. And it’s probably going to be bad, so I’m afraid their thought process will be, “If all options are bad, let’s take the bad option that treats the cancer.” Whereas Mom and I and the primary doc are thinking, “If all options are bad, let’s take the bad option that doesn’t involve aggressive medical procedures.”</p>