Parents caring for the parent support thread (Part 1)

<p>I am still a dozen pages behind this thread, catching up as we all try to save Dharma from making mistakes we have made or seen made.
My FIL sent a desperate email a few weeks ago, needing all the kids to come for a powwow as he “cannot do this any more.” He has cried wolf in this way for over a decade and is competent such that we cannot mandate he do anything. The “drop everything and help me” calls & emails have gotten very old, though all of us try ot be sympathetic and helpful. He then gets angry at any offered assistance or ideas.</p>

<p>DH & BIL/SIL are all headed there now, FIL told me to cancel the flight, he doesn’t want anyone to come and tell him how to live his life. Fingers crossed for a pleasant visit.</p>

<p>MIL is quite disabled and has been in need of more and more care, about 5 years ago they went to morning and evening care then last year they moved to overnight care. FIl is too old & frail to do the care himself, which no one other than FIl expects of him as he is 90+</p>

<p>Some people do not relate well to people but do to animals - in part because the animal doesn’t demand anything beyond getting fed and petted. Animals can give much joy to owners.</p>

<p>I know some people that have a large number of animals - two couples, both w/o children.</p>

<p>BIL obviously lacks interpersonal skills or worse.</p>

<p>Interested to hear how the process goes…</p>

<p>The rescue mode reminds me of my MIL who would not take oral steroids for arthritis but would take a steroid shot when ‘rescue’ needed…</p>

<p>Many here, myself included, provide solo elder care despite having siblings. I have 2 who live far away, although if they lived next door, would do zero for my surviving parent with dementia. Though I have navigated everything for my parents for at least 14 years, while having one sibling’s child live with our family of 4 for several years (the other sib retired young with full pension/no kids), they remain uninvolved, unconcerned and indifferent to any efforts that may be happening here. Not a thank you, and if the “functional” one visits at holidays, there is no offer to help or willingness to visit parent with dementia independently. Regressed much? During this time, one parent had a terminal disease and the other 3 members of my immediate family all faced potentially devastating or life threatening illnesses (all thankfully on the other side 10 years later). </p>

<p>I share this because here is what has worked for me and perhaps it will help others:
-own what you choose to do and try to see the wisdom and perspective gained by walking the end of life walk. Do what matters most to you and lets you look yourself n the mirror.
-set limits and honor your primary obligations to the family (in whatever form) you created

  • don’t go to dry wells when you need a drink. Use what you know- Maya Angelou said it well, “when someone shows you who they are, believe them.”
    -you can’t always save people from themselves, but you don’t have to go down with their ship, either,
  • take care of yourself, seek support, counsel and physical well-being from genuine sources.</p>

<p>I have learned much here and it is a process. So many remarkable stories and I appreciate them all.</p>

<p>Sorry about your situation somemom, very much.</p>

<p>I appreciate the sympathetic and understanding emails about how to make sense of my sister’s silence. And I do appreciate that she is troubled with Krohn’s disease. But Krohn’s does not prevent her from traveling far distances to competitive dog shows and working two jobs, one in a hospital, and one working weekends as the nurse on duty at a big casino (It is still Reno, after all). My emails were not excessive or over the top. You are bound to tell you sister that your mother is in ER, in hospital, in nursing home, transported by ambulance. You reach out by telephone to a skilled nurse when you’re in a grey unknown area. And where big amounts of money are concerned, you inform her by mail since there is no other way to reach her. So no, given that the circmstances are/were a calamity, I duly kept her informed. But now, no more. The next thing I imagine is sending her a postcard (so she cannot ignore opening it) with mother’s new AL address and phone number.</p>

<p>Yes, I have many siblings, all of whom are showing different degrees of interest and assistance in helping our parents are they age. We all live within a few miles of my folks yet some of us are there MUCH more often than others–some are there only when there is something to be immediately gained while others consider my folks place somewhere they can unload things they are trying to get rid of. When problems or concerns arise, the same few regularly pitch in to resolve things. </p>

<p>It does make sense to believe what people show us they are–they show us again and again.</p>

<p>I am off to take my mother to a doc appt. She called me today, voice creaky, to say I will get a key to her apt now and she is “very worried” (presumably, about her health.) I highly doubt I will have much impact. I just had lunch with a former neighbor/soc worker and a chat with bff last night, who reminded me I have limited control. Sometimes, rather than seek perfect help, we embrace the help we do get. </p>

<p>Well this was a timely article that just showed up in my inbox:
Tips to Manage Caregiver Stress</p>

<p><a href=“America's National Elder Care Directory | ElderCareMatters.com”>America's National Elder Care Directory | ElderCareMatters.com; </p>

<p>Yes, LF, you have a very wise BFF. </p>

<p>The Serenity Prayer for all of us:</p>

<p>“God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.”</p>

<p>The last line is the tricky one. I’ve struggled with it many a time, and lost. But I’ve won enough to know how true it is.</p>

<p>Let us know how it goes at the doctor’s.</p>

<p>A sad essay about the mysteries of dementia:
<a href=“The Mysteries of My Father's Mind - The New York Times”>http://opinionator.blogs.nytimes.com/2014/08/13/the-mysteries-of-my-fathers-mind/&lt;/a&gt;&lt;/p&gt;

<p>Dharma, I understand your sense of sadness and bewilderment regarding your sister. Sometimes I am able to forget my sadness and know that I’m involved with my mother (within my boundaries) because I believe it’s the right thing to do and don’t care what my sibs do, and other times I just can’t help wondering why they don’t want to help ME (not my mother). Therapy helped somewhat, but as her health continues to decline, it’s hard to do it all alone and not to take their lack of involvement personally.
I encourage you to continue to set your mother up in a situation where she is well cared for and you become involved only when you choose. Clearing out my mother’s house and selling it alone brought up a lot of memories but now that it’s done, I have more time to spend with my family. You’ve made some great progress in the past few weeks! Now that she’s amenable to AL, strike while the iron is hot!</p>

<p>Thank you Cashel, what a kind note!</p>

<p>I have a few minutes to write before we leave for Danbury for the Orthopedic shoes. Managed to get DD to MD this am; do grocery shopping; FEED girls, and take DD3 to library for three books. Accomplishments! DD2 just yelled with a thrill that she got 100 on an on-line computer science course she will get AP credit for in HS.</p>

<p>But I have to be careful this afternoon. I am beginning to tell I am getting confused about the difference between left and right; how much distance there is between oncoming cars in traffic (don’t worry I am SO CAREFUL); feeling dizzy.</p>

<p>Typed out two copies, one for me and one for mother with details about the three upcoming AL appts over the course of the next two weeks.</p>

<p>But the stress is from yet another MISTAKE. THREE SO far and I have caught them all and I am a NOVICE at this. Yesterday’s mistake. The payroll woman, called, as promised, at 11 on Wednesday to get the DAYS of employee’s employment to process payroll. I told her 14. No big deal, right? Well, the caregiver told me last night when I told her I would pick them up at 1:45 today that her paycheck (arrived special delivery) was for 7 DAYS. The sweet young woman in payroll with the dear foreign accent made a HUGE mistake. To show me, in our first conversation, what the expenses would be, we used a hypothetical payroll of 7 days to see exactly what is paid / gross/ net / the employee’s taxes / the employer’s taxes.The “7 days” was just for “show and tell.” Somehow she used that column of numbers to process payroll for ONE WEEK instead of the clearly defined 14 days, which I expressly told her on Wednesday when she called for exactly that reason.</p>

<p>So I was anxious and troubled; I know the payroll company is open 24/7. I left a voicemail for her at 8:30 pm. She called me at 8:30 am, understood the problem immediately, told me she will void the first check; tell employee to tear it up; and employee will get a new check for two week’s work by special delivery on Monday. Employee is serene about the whole thing. But another round of stress, phone calls, messages, back and forth. This is the THIRD MAJOR MISTAKE I have uncovered myself, the fault of paid professionals.</p>

<p>Dharma, just think, as soon as your mom is in AL, you’ll never have to fool with payroll or employment issues ever again.</p>

<p>I adopted my daughter when I was almost 50 and she was almost 2, really, in my humble opinion, the last possible moment to take on motherhood. But for years I thought I was doing her a huge disservice by not providing a sibling for her, to endure my decrepitude when I inevitably became a burden to her. I felt that way because of how my brothers and I came together when my mom died after 7 years of severely declining condition when I was 35 and they were 33 and 27. I no longer feel that way, since during my dad’s final 4 years they have been much more hindrance than help. Both have serious health issues which doesn’t help but every time I even dreamed that one will be useful, he let me down and then made everything harder.</p>

<p>I guess it’s true that Dr. Freud never sleeps.</p>

<p>So, old mom, you are the oldest of three siblings. Sorry your brothers are so inept, and it is too bad they are in bad health so young.</p>

<p>Just telling stories. Yesterday I picked DD3 from a playdate with a little girl whose parents are from the Phillipines. (sp?) We always have "mom"talk after the play dates–she is very gregarious and talkative, and very, very warm and friendly and keeps me to talk. So I told her about my sister. This mom is much younger than me and just judging from her house and lifestyle (BAD thing to do, my big flaw, I know it and work on it–my husband–a believing Christian–would call it a “sin”)), I just thought her life was “easier”; everything spotless in the house, landscaping, perfect clothes, in comparison to me, who drives a wreck of a car, plus a brush through her hair once a day, and is always falling apart. So when she asked me, how are things, I mentioned my mother’s ills but minimized them, but said I was sorry I was so mysteriously estranged from my sister, and asked her, what did she think it was all about?. She then proceeded to tell me how, when her FIL with cancer fell to the floor in Queens (NYC), his own son in nearby Staten Island would not go to bring him to the ER; she herself–a DIL–drove 1 1/2 hrs from the country where we live to get him and take him to the ER. (Later, I wondered, why didn’t she just call an ambulance? So strange…I wonder, why?). At the same time she was flying back and forth to the Phillipines to take care of her mother with cancer. I felt so bad to think of how I superficially, wrongly assumed their lives were “all youth and a breeze”; clearly there is so much for so many going on below the surface.</p>

<p>Made it back from the shoe maker this afternoon without having a car accident or hitting a pedestrian. But my mother–the super-brain–pulled one on me. She remembered, like from yrs ago, one yr for Christmas or a birthday we got a birthday cake or Xmas cake from Trader Joe’s in Danbury. The girls and I have a ritual of stopping there on the way home from Chinese school on Saturdays as a “reward” for Chinese School. My mother learned about the wondrous Trader Joes. She LEAPED on this opportunity and asked us each week to pick up for her some delicacy from the bakery in Trader Joes. Such a minor thing, but you know, it just interfered with my intimate afternoons with my girls, burdened me with a responsibility, and worst of all, made it necessary for me to take the goodie to my mother’s every Sat afternoon and stay for a brief visit. Well, she has an iron-trap memory. The shoe-maker was in Danbury today and she said she wanted to stop at Trader Joes for baked goods and bread. Now, if I were a bent-over 87 yr old who need a walker or shopping cart to ambulate,so slowly, I would just send my daughter in to pick out “something sweet and a white bread or rye” or whatever she wanted. But no, she had to go in, the caregiver and I had to move the shopping cart to her car door and take baby steps with her while she made her way into this super-packed store. To my stupefaction, she examined every baked good for expiration date, list of ingredients, cost, will I like it best or not…she even turned the items down to look at the bottoms of the pans…am I wrong, but is this weird? Is it weird to leave two other people standing by doing nothing while you indulge in a time-consuming self-satsfying exercise? Or is what you do for an 87 yr old mother who has so few pleasures in life? She said she wanted a rye bread so I scooted over to the rye bread section and said this is the only one they had. She mused for a minute about whether she wanted seeds or not…I couldn’t believe it. She accepted the rye bread. </p>

<p>The caregiver is a dream. She made goulash with noodles for my mother last night. My mother told me they have conversations about history and art. In the waiting room with her this afternoon, I was reading a bio of Eleanor of Aquitaine, and the caregiver takes about the friction between the principalities that are now modern France, and about the 12th century crusades. She is quick to do everything in her job description, and goes way beyond. It is a shame that the new minimum wage laws/overtime/sick leave/paid vacation laws go into effect on 1/1/15, but the glaring fact is that we cannot continue to afford her. In a few words, she is doing GREAT withmy mother.</p>

<p>With the AL visits we have lined up, I have to talk to each counselor about the undesirable possibility that my mother runs out of cash before she/we sell her house, and how do we keep her in AL and pay for it while the house is is on the market. One woman scheduled to give us a tour said 'the business office will guide you through that." So I should try to…relax…</p>

<p>Dharma-
Just.say.no.</p>

<p>From LasMa, thank you:</p>

<p>Dharma, just think, as soon as your mom is in AL, you’ll never have to fool with payroll or employment issues ever again.</p>

<p>LasMa, this afternoon my mother left for me, unopened, two big envelopes from the Dept. of Labor in Albany. I opened them at home to make sure there wasn’t something vital I had to do immediately, but I have time, but for one of the envelopes, I will have to call the “help line” for guidance. Earliest opportunity is Tuesday…</p>

<p>Must add, my mother is greatly reduced in capacity since say early June. She is an IMMEDIATE candidate for AL with more than a minimal amount of care.</p>

<p>jym626, I read you fully. I can’t help it, it is something from my history, my childhood and adolescent (fraught you do’t want to know), my weak sense of assertiveness (certainly much weaker than my mother’s). A psychiatrist who met/talked with us both (me and my mother) remarked to me (over 20 years ago!) 'you and your mother are very different people." I recalled this to my husband last night but we didn’t come up with any great/new insights. But I would give anything to go back to that psychiatrist 20 years ago and ask him , Why ? How? Please, can you elaborate further? This would help me. I was young and unused to authority figures like MDs. At my age now, I can talk to them. But it will be a life-long mystery about what that MD would have said if I had questioned him. </p>

<p>Are you familiar with mindfulness? Its the ability to objectively stay in the present, rather than wondering about unanswerable questions from the past, or worrying about the future. <a href=“Mindfulness | Psychology Today”>http://www.psychologytoday.com/basics/mindfulness&lt;/a&gt;… Your history may explain where your behaviors come from but you, in the present, here and now, have the choice to change your thoughts and behavior today. Yes, it is a choice. And the choice is yours to make. You CAN help it.</p>

<p>Dharmawheel, I learned to say to my father: Sorry, I can’t stay to do [whatever time-consuming and/or unreasonable and/or I-just-couldn’t-take-it demand today. Next time. And then I brought him home. And before I came back the next time, I would say, "do you want me to take care of ___ that you asked me about last time? The chances are that he would then let me do it myself which was always much faster.</p>

<p>Although she doesn’t want to admit it, she really wants to spend time with you. But I can completely understand your need to escape–she’s certainly poisoned her relationship with you. But it’s amazing what operant conditioning–you be nice and I will stay with you longer–will do. Hope it works for you as well as it worked for me.</p>

<p>Thank you both. A word before I go upstairs and join DH. jym626 you reminded me of something I used to know, but in the whirlwind of months, I haven’t given a thought. And you reminded me and I am grateful. Believe me, there is no one around me to remind me. Before I had my daughters I used to meditate and have lunch at the wonderfulChuan Yen Monastery in Carmel NY. Look it up, really baus.org. It is a big deal place. I had friends and spiritual advisors there (mostly nuns) whom I spent much time with, and I am proud that I was an English-speaking guide for visitors. One afternoon when I was unhappy (infertility and hormone woes), I spoke to a nun from Taiwan and she said, “Let’s have ice-cream!” We had ice-cream together, and it was the simplest consoling moment. When the phenomenal Big Buddha Hall was dedicated in I believe i was 1995 Iwas with a small group of Westerners who had a private audience with the Dalai Lama. He spoke Tibetan and his words were translated into English. Mostly, he talked about how he didn’t hate China and loved above everything else harmony between all peoples. He cried tears, which was remarkable.</p>

<p>Well , at the lunch line, I by myself ( my husband was with our first daughter then about 1 y old) I started to chat with two young women in Tibetan garb, clearly from the part of India where the Dalai Lama has his home base (it is a word like Dahrmrasala in India, I don’t know exactly). The Dalai Lama approached the three of us , clearly wanting to talk to the two young Tibetan girls, but he kindly spoke to me and shook my hand. I knew he wanted to talk to the Tibetan girls, so I made a holy gesture and said goodbye. But I will never forget , I shook hands with the Dalai Lama and should certainly, now, will ands should return to his thoughts. That you for the reminder about “mindfulness”!</p>