Parents caring for the parent support thread (Part 1)

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<p>When my Mom was in Independent an then Assisted Living/Memory Care, a four-year journey, I just continued my same pattern since marriage of visiting 2x/year for a week, plus phone calls weekly as I’ve always lived 8-10 hours drive away. The calls got distressing until I began to talk things over with my brothers who lived near her. We’d share notes and assess her degree of deterioration (question repeats, mostly but then social isolation and heavy drinking). They gave me tips on how they handled some of her more bizarre new behaviors. I’d skype into the monthly meeting that the facility held for families of residents, where social workers presented a different topic to educate us. My older bro got sick himself, so checked out emotionally of the Mom-care team. </p>

<p>When she moved into my younger brother’s home, because we felt the AL wasn’t worth the money, over those 7 months I went 3x for 2-3 week live-in periods to take his place in his home so he could go away on much needed, much deserved vacations. with his S.O., who is a saint and helps care for my Mom. The other option of sending Mom to me was impossible, because she couldn’t adjust to new routines. Fortunately I was no longer teaching so could DO that. That was like doing 3 nursing shifts, and I realized up close what my bro and his S.O. were doing all this time. Phenomenal amount of work.</p>

<p>When we put her into a fulltime skilled nursing home, I changed the visits to a half-week every 2 months. My brother was gracious to house me,. Those were valuable times because he was very skilled with establishing emotional boundaries and taught me how to do that. By then our older brother was living in a different nursing home with terminal diagnosis, so everyone is on overload now. </p>

<p>When my Mom was in her earlier stages of decline, all 3 of us sibs could work on things together. One thing we did was pledge not to war with each other over her care, or second guess each other. I did feel as though I “saw” things when I came to town that they were missing, perhaps as the only daughter. For example, I was railing about the impact of her alcoholism on her memory loss for years before my brothers would agree it a problem and intervene. As the out-of-towner they thought I couldn’t possibly know more than they who saw her week in, week out. And yet, most of the big changes in her care situation were kick-started by my visits. But I had to work hard to get my brothers to agree, as they saw it all more in a slow-motion sliding scale. I’d come in with months of no-see and the dramatic changes would be very obvious to me. I had to learn to express things by prefacing with words of support for all they were doing, because IN FACT they were doing much more than me. But, I believe I was more observant than they of big shifts. </p>

<p>The greatest gift my in-towner brothers gave me was to make me feel that I was “part of the team” and not a bossy visitor. My gift was to listen to them vent by phone conferences, go and “spell” them to take vacations, call extra on the phone for another tedious/repetitive Mom conversation when they’d simply had enough of her for that week. I had patience to listen by phone in lots of detail with her, something they never do because it makes them crazy. They were all about the 30-second convo to hear her problem which they’d go to fix (girl boy gap there, I suppose) by heading to the grocery, bank, whatever. We did very different things but respected each other for the effort.</p>

<p>Establishing boundaries is essential but it can feel brutal. There are times when my brother has to warn my Mom he’ll hang up on her if she harangues him once more on that call, and then he follows through. Do we sound like the kind who’d hang up on our Mom? And yet, I understand now why he does. When it’s been the sixth call that day about some irrational request, it has to happen or he’d just implode – and he’s doing all the time for her. Brutal on him, but he must. </p>

<p>Siblings are a great help if they can get over themselves and recognize all that the other is doing, whether in or out of town. I’m just lucky not to have a slacker-sibling and feel very sorry for any of us who do. </p>

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<p>I can so empathize with this paying3tuitions…I have one sister who lives within 15 minutes of Mom & Dad, another 3 hours away and I am 7 hours away. Since my dad’s stroke 4 years ago, I have tried to visit at list every 8-10 weeks for 2-4 days at a time. Initially, it was more like one week out of every four. My nearby sister is the youngest and has the youngest children, while all of mine have now graduated from college and are living on their own. My parents still live on their own, with my mother bearing the burden of caring for my dad with some in-home help, but that is their decision. My sisters have a very hard time reconciling their expectations of each other…both think the other should be doing more. I’m happy for them to do what they can, and both leave me alone because in reality I spend more concentrated time with mom and dad than either of them. Mid-distance sister tends to drive in for the day about once a month, which, in reality, gives her about 3-4 hours actually with mom. Over the years my nearby sister, who I initially think pulled back in order to establish boundaries she could live with, has become a bit more flexible, bringing dinner in one or two nights a week and doing the grocery shopping when the weather is bad. I am the go-to daughter…car needs to be serviced, wait for me, specialists appt’s…schedule when I will be in town. I know the pressure of being the one called in an emergency is enormous, thus my nearby sister’s inclination to pull back from the day-to-day needs, but sometimes I wonder. My mom often doesn’t call this sister because she feels like she is made to justify the “emergency” and my sister decides if it’s critical enough to respond as requested. Now I recognize that not all calls are true emergencies, but if mom needs something, to me, if the “privilege” is not abused, just do it. But then again, I am not there and I do so appreciate that me sister is…and I tell her all the time. I think all families have to find their center and that each sibling has to do what they can, in the way that they can. Biggest problem is they ALL call me to vent about the other and the only one I will listen to any more is my mother. I tell the others that they just have to do what they have to do and leave me out of it. All my emotional energy is devoted to my mom & dad and my immediate family. I have always been the peacemaker in our family, so I guess keeping things on an even keel is my place in the family, but I have drawn the line in the sand. I can’t do it anymore. I know the day will come (probably sooner rather than later as I have described before) when we will all have to rethink this reality, but in the meantime we do what we can. I’m headed to their neck of the woods in 3 weeks for 4 days…the accessible van needs to be serviced! </p>

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<p>At some points, I couldn’t afford to fly across the country to see my grandmother more than twice/year. And she really wanted to see my girls (and was on her best behavior then,) which made it more complicated. Still, that was more than my brother (but he did call weekly.) My mother hadn’t seen her in ages. (Both were an easy 90 minute flight.) Fortunately, she was pretty independent til the last 6 months. And had friends, including some younger who were happy to drive her places.</p>

<p>As difficult as my grandmother could be, (usually a risk she’d turn into a tornado, we never knew when,) she was also easily pleased. In addition to calling, the girls and I would rotate sending a letter. She liked that sort of old-fashioned contact, it was easier for her to recall details (or re-read a letter) than a phone conversation. We also sent a photo or two, every so often (Just one or two, so it felt personal. And, after a visit, would leave one or two pix of us with her.) It was part memory jog and she also liked showing her friends, in that way our elders often do, some proof they matter to us.</p>

<p>Even if the elder is closer, this can work. They grew up valuing letters. They and the photos are also visuals. Worth a try. </p>

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<p>Paying3, I can attest to the value of a supportive long-distance sibling. I don’t know how I would have gotten through the last 4 years without my brother and his wife. They always have my back even when they’re not here physically. </p>

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<p>Am happy that after helping get mom over 3 dozen pairs of shoes to try on, she’s settled on two pairs of sandals and two pairs of walking shoes she likes which fit her decently. Was able to get Nordstrom’s to take back the shoes she didn’t want of theirs and Zappos to take back all the ones they sent that didn’t fit or she didn’t like. </p>

<p>It feels good, but she is so unused to feeling the sides of the shoe at all, since she’s used to wearing tennis shoes that are about 3 sizes too large and long and thinking that is how shoes are SUPPOSED to fit. Crazy!</p>

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<p>Glad you can finally move on from the shoe-trying phase. That sounded so frustrating. I’ve mentioned to my mom that she should get some new shoes but so far she is not biting and I’m not pushing. She seems perfectly content to wear slippers all day but I want her out and walking when the weather gets nice.</p>

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<p>Hugs to all you in the midst of many struggles and adjustments. I could relate to many situations - I am the sibling far away, so I would see dramatic changes between visits. Both my parents are now deceased.</p>

<p>With dau’s graduation, it turns out H’s uncle (age 92) is in ICU in another state for congestive heart failure - he might respond to Tx and might not. If he dies, his death may impact grandparents coming here (joint celebration with significant anniversaries - also have papal blessings for anniversaries - parents and ours).</p>

<p>Just continuing to move forward on things that have to get done.</p>

<p>The observations on the med adjustments with weight loss is good - also making sure enough pain medication when called for. Terrible to have to suffer through night or weekend. </p>

<p>It would not hurt to ask about hospice evaluation with father not eating.</p>

<p>Caretaker mother - would she benefit talking to a therapist about her feelings as her situation will change once her husband passes? Does she have a close sister or relative or close friend she can share feelings with besides her children? Sometimes same generation sharing helps.</p>

<p>Prayers and blessings.</p>

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<p>CornPops, I’m so sorry. I’ve never had that particular problem (yet), but it sounds awful. Have you talked to the doctor(s)? </p>

<p>Agent99, oh my goodness, you are really going through it. It sounds like you’re doing your best to establish some boundaries, but wow, is she making it difficult. One thought that occurs is that your DH needs to be on the same page; e.g., when he relents and takes her shopping, that undermines you. Maybe a gentle conversation will show him that you two need to present a united front.</p>

<p>When we were going through a much milder version of this, sometimes it helped when I presented Mom with two concrete choices – Do you want me to take you shopping on Tuesday, or to the stylist on Saturday? I can’t do both, but I’ll do whichever one you want. Of course, she wanted both, but I’d just keep offering her the choice. If she refused to choose, I’d tell her to let me know when she decided. They’re like toddlers; if you give in, they’ll use it against you next time. </p>

<p>On the incessant phone calls, personally, I would not respond to any of them. If she leaves you 8 messages in a day, and you call her back, you’ve rewarded the behavior. What would happen if you just didn’t call her back for, say, 3 or 4 days? If she has an imperative errand, there are other options, and she knows it. Take back your power.</p>

<p>Another thing to keep in mind is that she’s grieving, and maybe this is how she’s expressing it. NOT that you should sacrifice yourself, but just some perspective. My mom’s behavior has changed too since Dad died. I think that generation sometimes has a hard time expressing emotions directly; they come out in changing behaviors and personalities. </p>

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<p>It always helps me to read this thread- a reminder that many of us are going through similar issues with our parents. </p>

<p>My 87 year old Mom was hospitalized earlier this week for pneumonia. Her care was wonderful and I have had no complaints- until last night. I had already been to see her twice yesterday (I work right next door, so ran over before work and at lunch) and was told she would not be released yesterday.I was going out the door to visit her after 7PM last night and saw that I had just missed a call from the hospital. When I arrived, I was told that the Dr. had released my Mom at 2PM, but the nursing staff missed it on her charts. They said they needed to release her immediately or Medicare would not cover the night and we would be billed for it. I explained that since I had been told she would not be released that day, I had no one to care for her, my sister had delayed her trip from OOS by one day so she could make better use of her time here, and I had not even brought clothing for my Mom. I insisted on talking to an administrator but he just told me that I could leave her there for the night but would be charged. We went around and round but in the end if I had left her we could have been stuck with the charges. By the time the Staff disconnected all her tubes and got her ready, she was released at 9:30PM with absolutely no warning! My Mom lives by herself and she can’t go to my house as I have multi-levels and she can’t get around. When we got to her house, I could not get her out of the car as she was too weak. I contemplated letting her fall so I could call 911, have her readmitted and then sue the hospital, but for obvious reasons I did not go with that option ( just so I don’t get called out on that, let me assure you I am kidding and am also not a law-suit type)! Anyway, I finally got her in the house at 10:15 PM- by that time she was so weak she just collapsed in her recliner and went to sleep. I could not leave to get my things and spent the night on her couch. She seems better this morning, but I am so mad!!! I have already penned my complaint letters which will land on every desk possible at this hospital, followed by phone calls! </p>

<p>The funny thing is that I work for a not-for-profit which is affiliated with the hospital and through which we provide a Care Transition program aimed at preventing elderly, chronically ill patients from being readmitted with the same condition over and over. While I am not directly associated with that program, I am involved on the outskirts and know that this situation is in direct conflict with everything we are trying to prevent! Fortunately we are having a team meeting Monday and you can guess what I will be talking about!!</p>

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<p>takeitallin–wow. If the hospital was discharging your mom in that state it sounds like she should have been taken by professionals (AMBULANCE) to a nursing home for rehab & further recovery. Ay-yi-yi.</p>

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<p>Assuming your mom is Medicare, there’s an appeal process which the hospital is required to tell you about. If you think she’s not ready for discharge, they can’t discharge her until the appeal is settled. And they can’t charge you while it’s under review. </p>

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<p>Also, if she’s been hospitalized for 3 nights, she qualifies under Medicare to go to skilled nursing. </p>

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<p>I’ve had simlar things happen to both my mother and FIL, where decisions to discharge were made late in the day when earlier in the day there was no indication of discharge being contemplated. Unlike your situation, my mother was returning to a nursing home, so it was just inconvenient. With my FIL, he was being discharged to rehab, but DH had to stick around to facilitate the transfer and deal with paperwork. We lived almost 3 hours away from where he was hospitalized and DH didn’t get home until quite late. At least, they were both being discharged to someplace where they’d be safe.</p>

<p>I can understand your frustration and anger with how this situation was handled. I’d be writng letters too. </p>

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<p>LasMa is right on target about discharge dispute and skilled nursing regarding medicare patients. I wonder if your mom was admitted as “observation” versus a true hospital admit that would kick in the 3 night clause for skilled nursing. In any regard, you should make an immediate complaint to Medicare as well as make an appointment to visit the CEO. From what you are reporting, it appears that the hospital violated several statutes. It can be so difficult to navigate through the health care system. We went through similar pressure from 1st year resident regarding a call to me, (out of state), that my 97yr. old aunt was discharged. This was after working with discharge planning all week and agreement on placement that would happen in 2 more days due to medication adjustment and further treatment of the diagnosis of C-diff that was acquired in the hospital from antibiotics. I was not very pleasant, (I was a nurse at that hospital for 30yrs and know how the system works). Needless to say, the discharge went according to the prearranged plan. Hope your mom is recovering and you have the services in place that she needs.</p>

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<p>We had something similar threaten to happen, with my grandmother, long distance. It was the floor or specialty social worker who intervened. In that case, she had a different orientation than the nurses and docs.</p>

<p>I;m also wondering what sort of advice anyone has for long-term insurance, how to decide what’s important, how to choose. Thx.</p>

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<p><a href=“http://www.thisamericanlife.org/radio-archives/episode/523/death-and-taxes”>http://www.thisamericanlife.org/radio-archives/episode/523/death-and-taxes&lt;/a&gt;&lt;/p&gt;

<p>Last weekend, 2 weeks after my dad died, I heard this on the radio and it was a comfort. It’s about hospice and the process of dying. As you may remember, I spent three hours with my dad, and he died shortly after I left. He was in hospice care in the hospital after a massive stroke. Although it is very intense, it helped me trust my feelings that I remember about that day, and the ones I didn’t remember. Just in case it is helpful to anyone, here it is.</p>

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<p>Moving into major crisis mode here. Mom has taken a huge downward turn over the past 3 weeks. My sister is there through Monday, we have Tues & Wed covered and I’m going Thursday through Monday. Not sure what will happen after that. She literally and physically cannot move nor can she take care of herself. She has no energy, can hardly breathe and is in tremendous pain. She needs help for every single thing from the moment she wakes up until she goes to bed at night. She needs everything from her coffee made, help to the bathroom, food made and brought to her, anything that would require moving, she needs it done for her. That obviously includes shopping, cleaning, laundry, etc. She literally has the needs of toddler and cannot be left alone now. Even just going out in the car and in a wheelchair has her breaking down crying and needing to go home. She doesn’t even have the energy to go see assisted living places. She has a doctors appointment Friday that I’m going to take her to and I suppose I need to throw myself at the doctors feet to help us determine what to do. She won’t agree to meals on wheels, won’t eat things like jenny craig or nutri system, won’t use a food delivery place like pea pod. I don’t even know what we’re supposed to do - if she can’t or won’t make any decisions for her care and we literally can’t all just give round the clock care, what happens? Does she get admitted to the hospital to force her into a “rehab” place? Do I ask about hospice care in front of her? I think ideally she just wants us all to go to her, allow her to stay in her 3 story home, and wait on her hand and foot, no strangers or outsiders welcome. Right now she’s getting it - we’re playing chicken but none of us can just leave her there alone. She keeps thinking the next specialist will be the one to cure her. I don’t think her doctor has the balls to confront her about this stuff. I’m also going to ask why on earth she isn’t on an anti-depressant.</p>

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<p>@eyemamom, I am so sorry. Can you and your siblings hire a live-in aide to stay with her and manage everything? I found an agency via the social services department at the hospital when my dad was hospitalized and we needed someone to stay with my stepmother. Expensive but reliable–they will not leave your mom alone. Antidepressants helped for my dad and my stepmother (and for me too!). Best of luck to you.</p>

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<p>Eyemamon,
It sounds like your mother is refusing to adapt to change. You are faced with two choices: doing what you mother insists on or doing what works for you. It sounds like having the children care for her round the clock isn’t a viable option for longer than a week or so, but in order for change to happen you may have to put your foot down and say, “No, I can not.”</p>

<p>We had a similar situation with my FIL. There came a time when he needed significant help getting to bed. It was time to bring in outside help but my MIL refused. She wanted the boys to come care for their dad every evening at a certain time. They could do it for a short time (2 weeks) but that was it. They refused to do it long term because it was a huge imposition. By refusing, my MIL was forced to make a decision (move her husband into a facility or hire in-home help). The refusing to help by the children was a good thing because it forced her to act and in the end, hiring help was a good short term solution. </p>

<p>So, it can be a good think to say NO to your mother. It isn’t necessarily a mean thing to do. Reality must be faced. She is a grown up so encourage her to act like a grown up by making her make a decision about how she’ll get the help she needs. It isn’t reasonable to expect her children to care for her 24/7 for the long term. </p>

<p>If the doctor tells her what she needs to do (as you want him to), what would change? Do you think that your mother would really suddenly ‘see the light’ and agree to certain things? Or would she still want her children to do everything? </p>

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<p>eyeamom, it really sounds like your mother is past assisted living now. An assisted living place provides some help, but your mother needs fulltime nursing care. The needs you describe would have to be met by a fulltime caretaker or a nursing home.</p>

<p>If she is in tremendous pain, IMO she ought to be getting treated for that pain now. The pain at least ought to be addressed before Friday, ideally today. With the tremendous pain and the trouble breathing, I’d suggest admitting her to a hospital.</p>