<p>Read your rant, worknprogress2. So sorry you had to experience such…ignorance? And rigidity. </p>
<p>Both of my husband’s parents wanted to be cremated and their ashes scattered in the same place. We are planning his mom’s memorial & scattering in May. Fortunately we can do whatever we like. :)</p>
<p>Also read your “rant”. I’m saddened by the reaction of the priest to your requests. You have every right to contact the pastor directly. I would have no qualms about seeking the funeral that your dad deserves. The rigidity and behavior of the young priest is another reason why many Catholics are so hurt and disappointed with their Church. My prayers are with you and your family. Bless your daughter, you can be so proud of this young woman. My son has been a blessing to me and to my mom. He recently took my mother to confession and went first to explain to the priest that mom has dementia but she requested to go to confession. The priest, also a young zealot, asked my son if he would like to receive the sacrament and my son declined, stating that he no longer practices Catholicism. The priest started very loudly ranting that he was tempted by the devil and he must repent. Good thing I wasn’t there, I’m sure I would have been excommunicated. This was said to a young man who also has helped to care for his Grandmother for the past several years, as well as his great-aunt.</p>
<p>I do not want to derail this thread - but may I just interject one totally off-thread story? </p>
<p>When I was ten, my friend and I went to the monsignor and made a reasoned appeal to be allowed to be altar girls. He, of course, did not agree and we did a very nice job of re-butting his arguments. Still no luck. </p>
<p>I was a rebel at an early age.</p>
<p>WNP2- You did not derail the thread. Being determined and thinking outside the box has everything to do with caring for our elders. </p>
<p>Sorry for all you are going through now.</p>
<p>Greetings, all – another from the “sandwich gen” who is so glad this thread exists. I’m encouraged by the support and advice here. I’ll try to summarize, and apologize if this gets long.</p>
<p>My 83 y.o. mom had become less and less active over the past year, primarily due to not keeping up with exercising and stretching prescribed by a physical therapist. (She was doing so great a year ago!) In September, she had severe pain in one leg, which came and went over the next several weeks. First diagnosed as sciatica, then arthritis, then two MRIs later, spinal stenosis which reallly does seem to match her symptoms.</p>
<p>No pain meds for the past two weeks, and she says she’s been riding the stationary bike, per doctor’s orders. But – the long-lasting effects of pain meds, mentally! OMG! She was on Prednisone, briefly, which made her totally loopy (and, happily, she also recognized that and stopped taking it) and was then prescribed hydrocodone, which made her only moderately loopy. Could the meds also have put dementia onto a fast track? </p>
<p>My older brother (always been single, just turned 63) refuses to believe there’s anything cognitively different about Mom. (Someone upthread mentioned the sibling who is most self-absorbed, etc., being the one most likely to deny. Oh, yeah. And he’s a Mensa, so he’s always right.) Bro visits her every couple weeks; they share a bottle of white wine and he half-listens to her while watching TV. Mom has a glass, or two, or maybe three most days, when she’s alone. Just what an oldster with balance issues needs, eh? – particularly with her tendency to pile papers “to go through later” here, there, everywhere on her LR and DR floors. </p>
<p>I visit or takl to her every other day. I’m now the friendly nagger/encourager – eating, drinking water, exercising – and she varies between receptive and evasive. It’s getting very weird and very sad. That my brother refuses to see what’s happening is beyond frustrating. (Seriously considering giving him a good punch in the head for Christmas!)</p>
<p>On the bright side, the suggestions in this thread re: helpful tools for older parents have been great. Mom’s getting a 2013 daily journal, so she’s not confined to the little squares on her calendar. </p>
<p>This did get very long – sorry. Thank you for listening!</p>
<p>WorkinProgress, so sorry for your added frustration in planning the funeral. Sometimes people make up their own rules and try to pass them by as God’s rules. Awful.</p>
<p>Welcome OILF- Meds can make a big difference in cognitive functioning. Individual meds can do it, as can combinations. I have seen the fog resolve with careful tweaking, but it can be hard to sort out what is a function of side effects and what is a separate process. It helps to have as few variables in play as possible; changing one thing at time is most informative. Three glasses of wine will not help clarify the situation! Many meds interact with alcohol, contraindicating consumption at any age (particularly pain meds).</p>
<p>Is the household disorganization new or a pattern? That could provide some clues.</p>
<p>Good luck with your Mom. She is lucky to have you making note of all this and following up.</p>
<p>OutinLeft … my long post was just eaten (grrr). But the gist was:</p>
<p>So sorry.</p>
<p>Me, too re the punch in the head for Bro. I did Thanksgiving with Mom with my H and told bro he really needed to step up for Christmas. We moved Mom to assisted living 13 november… which was a year after I’d been pitching fits to get her more help. bro preferred his head in the sand. blah blah blah on my circumstances, but one nugget</p>
<p>Try to get an mini evaluation for your mom. I got mine one six months ago (Dr. “passed” her) but now it is a very clear marker how far she has dropped. Maybe you can’t get much done right now, but these things tend to be irreversible so having measurements in hand (possibly really helpful for Mr Mensa, too) would be a step to take.</p>
<p>Thank you, travelnut and esobay – really appreciate it. </p>
<p>Re: the state of the household – pretty sure this has been developing over the past year or so, and really took off once the pain meds started. (Used to be super tidy.) As meds gradually leave her system/brain, this has been getting somewhat better, but there’s still enough piled around on any given day to trip her. Come to think of it, needing to “get organized” and always needing to devote time to shredding documents had become her main topic of discussion, and a handy excuse to avoid stretching and exercise. </p>
<p>Re: mini-evaluation – great idea. (Perhaps I can get a package deal, and get bro evaluated, too! Kidding – almost.) Not quite sure how to pull this off, though she has an appointment with her internist coming up. Right now, she’s extremely touchy about cognitive issues, ever since one of her doctors mentioned a possible problem (at the same time he was prescribing meds that certainly loopified her, which seemed a bit unfair) and, WOW! did that put her on the warpath. If I can blame the meds, as in, concerned they’re still having an effect, maybe I can pull it off? </p>
<p>Again, thanks. And, my3gr8boys, I am also very sorry about your dad.</p>
<p>I should have sent condolences as well my3gr8… I am sorry.</p>
<p>And I should not have said a generality “these things” tend to be irreversible. Not at all in all cases. My dad’s wife had a nervous break down last Christmas and it took a long long time to get her stable, but she is stable now (but in foster care home). But the med adjustments did help with the anxiety and paranoia and hysteria and some memory issues. </p>
<p>In my mom’s case, it will go down from here, how fast we don’t know. But I should not have projected onto your mom! Pain meds DO do a number as do hospitals. My mom took about 3 or 4 months to bounce back from the hospital before the one that dumped her off the cliff. </p>
<p>All we can do is what we can do and we DO NOT have to do everything as fast as possible. </p>
<p>I am trying to tattoo that mantra to my forehead.
(still thinking about punching out bro… he is younger after all and deserves it just for that, IMHO) jk…</p>
<p>Hi all. So sorry to hear of everyone’s losses and difficulties. Having a brother you want to punch in the head seems to be a common theme here. My dad has been in the hospital for eleven days now from pneumonia and I’m told will be moved tomorrow to a rehab facility to continue to receive antibiotics. Anyone dealt with pneumonia or rehab? My dad isn’t eating much or moving around like they want him to. Part of me can help but wonder if this is the beginning of the end. I am shocked that he is agreeing to go to one of these places as he has always fought the idea in the past. Seems extra hard dealing with all of this during the holidays as well when I’m trying so hard to put on a happy face at work and for my kids but its just not easy.</p>
<p>Sorry for your Dad’s health issue and totally understand how challenging this is, especially this season. The fact that rehab is recommended doesn’t necessarily mean the prognosis is grim, though I understand how hard it is to gauge this and how worrisome it is to wonder if there is capacity to “bounce back”.</p>
<p>Elders frequently go to rehab after more than 3 days of hospitalization and the goal is to get them literally back on their feet. My parents benefitted greatly from their time in rehab and were at excellent facilities. By definition, rehab care implies an expectation that the patient’s health status at hospital discharge is not the best level of functioning they could likely achieve with further health monitoring/treatment, physical therapy and time to recover. The usually sedentary experience in the hospital causes much muscle wasting, which happens quickly at older ages. They need to regain strength post discharge, but no longer require the full hospital services. After 11 days in the hospital, I would be very relieved to see a parent in rehab before going home. I have known people much younger who were “weak” for awhile after pneumonia. </p>
<p>Length of rehab stay varies by needs and at times insurance coverage and available supports at home impact this as well. I hope that he gains some strength and restores his appetite. Rehab will give you specific measures of how the recovery is going, help your father with his needs and work with both of you to consider any aftercare needs. Best to your family.</p>
<p>May I add something to what I have learned these past four years? I wish I had done a survey every six months of my parents mental and physical status. I would use either a chart that defines the stages of dementia (dad was not diagnosed, but he certainly had some kind of brain damage) and a chart that defines independent living. </p>
<p>You THINK you are going to remember what they were doing, but both my brother and I said yesterday that we wished we had written down what mom as doing six months ago. She has changed - but when did those changes occur? Are they happening more quickly now? She has been in assisted living for two months and although she seems to have adjusted, we think she has really declined. </p>
<p>As for dad, I always kept a simple spiral bound pad with me, so I do have a journal of all his trips to the hospital in the last four years (admitted nine times, ER only three) and so I have some documentation. </p>
<p>Anyway - I wish I had a better handle on mom’s level of functioning a year ago to compare to this year’s level. Must be the school psychologist coming out in me. :)</p>
<p>WNP2- Your points about noting status and keeping your own records make so much sense and I wish had noted more as we went along. These changes can be nuanced and hard to keep track of otherwise. </p>
<p>You also got me thinking about all the logistics one faces when helping their parents. It sometimes spooks me that I am the only one who knows all the specifics of my father’s life.</p>
<p>Building on your thoughts, here are things that have helped me over the last 10 years:</p>
<p>-I have a notebook with all banking, insurance, funeral arrangements, Social Security info, passwords, contact person, etc. in it. My husband knows where this is. Now if only it was always completely up to date!
-Another help is to pick up all records from former Dr’s offices if any changes in care or location are anticipated.
-If an illness is just starting to manifest itself, particularly if it is a cognitive problem or a likely terminal diagnosis, pro-actively making sure that your elder gives you permission to talk to their Drs., banks, accountants, lawyers, etc. is important. I found that different agencies require different paperwork for permission to both access information and act on someone’s behalf. This all takes time and can be overwhelming in a crisis. It is worth it to plug away at it, little by little. I feel the worst for people whose parents won’t allow the access when needed. I didn’t need to use the authority they gave me for years, but when I did, it was very convenient that my name was already on their checking account and that I could pay their bills on-line.
-Some rehab and nursing facilities, as well as assisted living places and elder attorneys can help sort out what priorities might be. </p>
<p>Sorry that your mother is losing ground. My observation with my father’s cognitive decline is that he holds his own at one level for quite awhile, but then when the dip comes, it can be quite marked. The time-frame has been very protracted, so that may be fortunate. I think a new setting, even one that is designed to address these deficits, may also reveal the decline that was masked by routine and familiarity in the former location. I wish you the best with your mother going forward.</p>
<p>Great ideas, Travelnut.</p>
<p>I am doing much of what you stated - one thing I tell people over and over again is that just because they have power of attorney, it doesn’t mean a thing until you provide required documentation to banks, former employers, medical suppliers, etc. Travelnut is right - do it before an emergency. </p>
<p>I have a large messenger bag where I keep all files and records for my folks - including a copy of their will and durable health care. I also keep check book in it. That way, if we are going somewhere, I just grab the bag and know I have everything. I know there are some flaws in that system - but it got to the point where it was just easier to have everything in one portable space and go. </p>
<p>ALSO - BIG piece of advice. Take the time to make a copy of all important cards if your loved one is at the misplacing everything stage. It is a lot easier to replace medical cards, etc. if you have all the info on the card. Trust me. :)</p>
<p>anxiousmommy, both of my parents have been in rehab/skilled nursing many times after hospitalization. In fact, if the hospital stay has been more than a day or two, I insist on it.</p>
<p>Two things in particular make it essential that they not go home after an extended hospital stay. First, they lose muscle tone at an unbelievably fast rate while lying in a hospital bed; if nothing else, they need rehab for walking until they’re safe to be at home. Second, things can go south very suddenly on the road to recovery, and I find it reassuring that their condition is being monitored by nurses and doctors who know what to watch for, and who can take immediate action. </p>
<p>I understand your hesitation; skilled nursing isn’t a fun place and you especially don’t want to face this at the holidays. But one thing I’ve learned is that my parents aren’t me-plus-30-years. Their needs and abilities are different. For example, if I were in the hospital, chances are I could go directly home after discharge. I’m able to take medications as prescribed, to follow instructions for aftercare, to restrict my activity as needed, to notice if something isn’t right and call the doctor. I have residual strength to manage daily activities as I regain my strength, perhaps with some family help. I have baseline good health to continue the healing process without direct medical supervision. None of these things is true of my parents. They need help and support and monitoring until they’re completely well, and for us, that’s best provided in a skilled nursing facility.</p>
<p>My mother has been in rehab a couple of times. First time in 2001 after being in intensive care with bronchitis and COPD. The last time in January of this year with celluitis (I am not sure of the spelling of that). Anyway, the first time she just had to get her strength back after being unconsious on a resperator and the second time for getting antibiotics through an IV in her chest and getting her strength back. Rehab is a good thing. It gives the person longer to recuperate and they get exercise.</p>
<p>Good news, my mother has now recognized that she needs help around the house and is thinking of hiring someone.</p>
<p>I have a couple of thoughts, based on my own experience this year. Just for context (and sorry to all who have already heard my story): I had a massive heart attack and went into full arrest in May. Spent two weeks in the hospital (most of the time in ICU) and two weeks at a rehab facility. Had at-home nurse visits, PT and OT, plus had a defibrillator implanted eight weeks after the MI. Just graduated from outpatient cardiac rehab.</p>
<p>1) In reading my hospital notes from the heart attack, I was amazed at the many errors about the medications I was on, family history, etc. Clearly my DH was not in any shape to give a full history and my medications list when we got to the hospital. (I was unconscious, so was not of much help.) Given my condition, there was not much time for the nursing staff to quiz DH, either. </p>
<p>In fairness, I did not have a list of my meds, doctors and history for him to grab and go, and I should have – I have had leukemia for ten years and I need to provide this stuff to docs all the time. I just had it all in my head. This was not helpful when DH had to contact my oncologist, primary doc, etc. to tell them what was happening. Neither of those docs have privileges at our local hospital, either, so not having all the info at hand made it harder for DH to get the other members of my team coordinated.</p>
<p>My inpatient records say nothing about the chemo and antidepressant I was on – and both are cardiotoxic. This would be vital information for the docs to have.</p>
<p>Since then, I have assembled a notebook with all my meds, names and contact info for docs, a history of surgeries/illnesses, a copy of my current bloodwork and the records from my heart attack. It is clearly labeled and sits on the cabinet next to the door. DH has an additional copy of my meds and docs on his crackberry.</p>
<p>2) After two weeks in bed at the hospital, I could barely keep myself in a sitting position. Lost lots of muscle mass, both shoulders went bad (and remain an ongoing problem), and my legs were like jelly. My chest ached for months from the CPR compressions (thanks, S2!), which also made it hard to keep my lungs clear. When I got to the rehab hospital, we started on building my core muscles again. My legs came back pretty quickly, but my trunk and shoulders have taken much longer. </p>
<p>3) I had also gone without oxygen while in full arrest, and while I have no permanent damage, there were some subtle changes for a while. I was dizzy with every postural change – going home to lots of stairs would not have been good. I did get frustrated while at the rehab hospital because I was ready to do more – until my body would suddenly protest. Had I been at home, I would have been pushing to do way too much, way too soon. I really needed to be at rehab – and I was in much better shape and much younger than the vast majority of patients there.</p>
<p>There are some drawbacks to rehab, and we wondered if we should have gone to the facility associated with the big heart center across town vs. one that was closer to home, where friends and DH could visit me more easily. And by that point, I really NEEDED visitors. I had to believe there was some normality at the end of the tunnel. </p>
<p>Certainly in my case, it was important for step-down care so that I could get the rest and therapy I needed to be able to face going home. Given that hospitals are so quick to release seriously ill patients these days, rehab is a logical step. It is also a respite for the caregivers. DH could go back to work knowing that someone was checking on me regularly. It helped him worry less.</p>
<p>After rehab, a home health nurse came by twice a week to check on me, and I had PT and OT three times a week at home. Not sure that I got that much out of it, but it kept me moving vs. sitting in a chair all day. For elders, getting out of that chair is critical.</p>
<p>It is important to be sure that the person is coded as having been ADMITTED to the hospital & has been there the minimum number of days required by Medicare if reimbursement by Medicare is desired. Some folks are finding out to their great dismay that the hospital did not officially ADMIT the patient, so they do NOT qualify for services after leaving the hospital, even if they spent time in the hospital and even had a procedure or other work done while in the hospital. This needs to be clarified BEFORE the patient leaves the hospital and can’t be done retroactively.</p>
<p>Once a patient goes home and it is discovered that the patient CAN’T care for him/her self at home, it is too late to then try to get them into a rehab program. If it is desired/needed, it will NOT be reimbursed by Medicare (at least that is my understanding). Timing is everything, which is why it is best to work closely with the hospital social worker as soon as the patient is admitted to the hospital so all the options can be reviewed and the best choices can be fully explored so the patient can have the fullest and safest recovery.</p>
<p>Thank you all for sharing. Some of the tips haven’t occurred to us. Countingdown your first hand account is very generous and really helps. I am thankful to my inlaws for being meticulous with a med list.</p>
<p>On the point of being surprised at the willingness to go to rehab - that quality of flexibility is so helpful So many times I have heard my inlaws say things like ‘No, I wont accept help with laundry. They won’t do as good a job as I like.’ Repeated, gentle suggestions have worked to bring them more help.</p>