<p>kjofkw, interesting. Hospice talks about how as they prepare to die, that detaching process is pretty common. I knew the end was near for my dad when I went to visit him at skilled nursing one Sunday afternoon, and he declined to watch a football game. In all my life, that was a first. A few days later, I took him a chocolate cupcake for his birthday, and he didn’t want it, another first. </p>
<p>Hospice has some nice info about the progression through the last stages- what may occur a few months out, then closer. Somehow, I found it reassuring, to learn the sorts of signs that may appear. </p>
<p>I’m sad for you friends reporting on watching an elderly parent fade away. My dad died of an unknown neurological disease about eight years ago. He was diagnosed at Montefiore in NYC–a top hospital–as having long, persistent, left untreated for years, Lyme Disease. He was on IV antibiotics for months in nursing homes. At Montefiore he told the MD we were in San Francisco and didn’t know vital facts, etc. I was shlepping him and my mother back and a three year old with a car seat and stroller 1 1/2 hrs to Montefiore before they just sent him to a Nursing Home with IV antibiotics as the only solution, but I think the situation was seen as a lost cause.</p>
<p>Except for the “exertion” aspect, it was not that difficult because he remained smiling and cheerful and knew us. Suddenly he went into a “sleep”–something like a coma–and just passed away. My husband had stopped to see him on his way home from work and was with him when he died.</p>
<p>When I had my odd melingioma (a benign brain tumor) two years ago I told the neurologist that my father had died of Lyme Disease and he said No, that was very unlikely. So, we’ll never know.</p>
<p>Congratulations to all you adult children who have moved your parents with their cooperation into Assisted Living. The Japanese have different clothes, rituals, obligations for very eel-defined stages of life. Those parents who enter Assisted Living understand something like this. They know they cannot become an “infant” to their adult children and recognize they are entering the sunset of their lives.</p>
<p>Today is Wed, and I have spent M, Tues, and Wed in front of the computer filling out forms for Workman’s Comp and disability and unemployment insurance, all part of my mother’s responsibilities with an “at home” caregiver. Mind you, I knew this was coming because I had read tons of info on this on the web and left printed copies of it on my mother’s dining table.</p>
<p>What I didn’t know was how complex these forms would be–there are Customer Service Numbers but the typical wait time for a representative is like 20-30 minutes. When I would get someone on the phone, each politely stayed on the phone with me while I went through every page and completed the application. From beginning to end of this whole process I have dealt only with very kind people. A plus. The day after I sent in the Workman’s Comp application electronically the cost figure came in with a contract for my mother to sign and send in. Get ready. I HAD READ on the internet that workman’s comp and disability were “relatively inexpensive.” The cost for workman’s comp for a year is $640. Disability is $60. I was so shocked at the $640 that I called the NY State number, explained the job, and asked why the cost was so high. Yes, I was told, that is the cost.</p>
<p>Early this afternoon, a new woman aloe our “implementation specialist” from the payroll company called to talk about setting up the payroll. I needed so much repeating, echoing her words, and explaining that I think I had her patiently on the phone over an hour. She explained how the caregiver’s paycheck would work. I knew my mother would also pay taxes, but I didn’t know, as the rep explained that my mother had to "match the medicare, social security that the employee pays, and some other taxes that I will need to ask her, again, to clarity for me tomorrow.</p>
<p>I made several calls, first to the elder care lawyer for her to explain to me what she meant by saying we should get a “promissory note.” She said, that is why I told you you have to come back. Evidently she has some voodoo to protect half of the equity of my mother’s house and still qualify her for Medicaid. My mother agreed to go with me on Monday to see the lawyer again/. Luckily I will have the caregiver to enable my mother out of the car etc/</p>
<p>I also called my mother’s case worker at my county’s Office of the Aging and reviewed my mother’s frailties and inabilities and asked her how an assessment is made for an elder to enter a long-term NH. She said there are special nurses who come to the home. She said without question my mother would qualify for NH. I called NH my mother liked to put her on the waiting list, if they have one, and talk about availability and admissions in general, but just left a voice mail and the woman didn’t call me back.</p>
<p>I also called the AL living resort my mother dislikes and squeezed out of the administrator how much my mother’s monthly “nursing additional service” would be and she said probably $444. Add this to the monthly cost of $3,800.</p>
<p>Before I see the elder care lawyer with my mother on Monday I am going to have to laboriously update my caregiver at home cost sheet and try to engage the lawyer in helping my mother to see the (what is now very evident) staggering cost between each. Mother told me “not to mention AL again” but I must bring it up in front of the lawyer.</p>
<p>When I tried to post, I got a line saying my post was too long so I had to break it in two. How I make you friends suffer if you read along. Strangely, the saga seems like the biggest bore in the world, like people who talk about their pets…but to me, of course, it is all consuming, and it is very cathartic to write.</p>
<p>BTW, as some of you probably know, I learned today from the woman at the office of the aging that to qualify for Medicaid you have to have $14,050 in savings.</p>
<p>Of course, compare the costs of AL with the cost of a live in caregiver PLUS paying property taxes, utilities, snowplowing, mowing, cable, phone, and a myriad of of other things. Of course the right choice is obvious but…</p>
<p>I feel something new and oddly distant about my mother. I realize she has not caught on to/had the sensation to tell her that she has “moved on” to a new stage in life, this stage requiring what she can get in AL. She is clinging to me like an infant. She does not have the insight that others have of knowing they have reached a new plateau in life. I know that when the time comes for myself, I will know.</p>
<p>BTW, the caregiver could not be more excellent. She worked for 15 years in a hospital in Poland and over 10 as a caregiver to very sick people in the States (sorry if I repeat myself, I know…). She has totally organized and administers my mother’s significant medications, cooks her sumptuous meals. Food means a great deal to her, but for some reason she has dwindled to about 98 lbs. We had the most bizarre shopping experience this am. Usually I do the grocery shopping solo/ But today she insisted on going with the caregiver and have me take a list with one cart and she take a list with the caregiver and another cart to pick out the “select” items, particularly cuts of meat. Evidently I am too stupid to get the meat she wants. She had to grab another cart to steady herself to the ladies room(chronic diarrhea) and the caregiver and I had to search for each other to coordinate and pay. Caregiver takes my mother’s blood pressure and monitors her heart rate every day. </p>
<p>On a positive note, when I told my mother about meeting with the lawyer on monday (she knows, another $400), she said, "So we may be able to keep some assets BEFORE I HAVE TO GO INTO A NURSING HOME. Yes, so that eventuality has gotten through to her. The woman from the office for aging is also sending me a list of my county’s nursing homes. She understands that many have a waiting list, but said you can always get into one–find an opening–and transfer.</p>
<p>This month, I also have to take her some distance to an orthopedic shoe maker because at the NH a skilled physical therapist showed her that one of her legs, because of scoliosis I think, is shorter than the other, and he put an insert in her shoe/ So, another day in August away from my daughters. </p>
<p>If any kind friends are reading along, you may remember that I called my sister in Reno in some anxiety on Thurs afternoon to please call me back Thurs, Fri, or over the weekend. She never called. Of course, maybe her husband took the message and forgot to tell her…but it doesn’t feel good, I like her and miss her and don’t understand. After the meeting with the lawyer, I will send her a letter by to keep her informed as I have been advised t do.</p>
<p>Yesterday my mother (a good gesture on her part) got a ride with the Commmunity Center to her PCP and I asked the caregiver to go into the examination room and listen to everything. She told me she did but I didn’t get any details (mother in the car). This am I asked the MDs nurse, very firmly and politely, to have the MD call me at the end of the day to recap for me my mother’s condition. Unlike the shrink who kindly called me back at my request, this MD did not. I wanted to ask him if my mother qualified for a NH and of a MDs referral was required. But later in the day, I learned you only need a special nurse.</p>
<p>At the mtg with the lawyer, I could tell Adele that she can have the caregiver for 3, 6, months, and tour AL at the Resort. But given her adamant refusals to consider it/even mention it, I know Monday is my last valiant try. The woman at the county office of the aging also said, as have SWs, nurses, lawyers, “she can’t be forced.” But with the woman at the office of the aging I asked, how does one admit a reluctant elder into a NH? She said she has seen this many times, and it requires persistent, ongoing, unrelenting, effort.</p>
<p>oldmom, fyi, the nursing home articles appear in print in Tuesday’s “Science Times over two weeks.” By the eminent Jane Brody, As an aside, unfortunately, I think she lost her husband while he was still relatively young. But the two articles were very helpful and excellent. Her suggestion about “waiting lists” impelled me to call the NH my mother “likes” to get her on the waiting list (if indeed they have one).</p>
<p>Hugs to you Dharma.<br>
One thought, it sounds as if your mother’s need for orthotics has existed for years. Don’t give up an August day with your daughters to tend to this. It has waited this long, it can wait until school starts. </p>
<p>My parents are still living with no assistance at home but each has confided worry about the other. I have been nudging them for years to get on the list for the IL/AL/NH place where several friends live. Evidently another couple they know moved there last month and confided that it was a 3YEAR wait…that made them at least make an appointment to interview. I’m afraid they will hear the financials and balk but they have plenty of money. This is a place where you buy in and has stepped care as you need it. I just hope they remain healthy enough to move in when their turn comes.</p>
<p>On Saturday we are finally having a memorial for my dad who died in April. I was waiting for my brother, who is very ill and lives far away, to be able to come to NYC and he is here for various treatments. When my dad died, my stepmother’s son brought her to Colorado where he lives. He put her into a memory unit in an assisted-living place.</p>
<p>Yesterday I talked to her sister who was invited to the memorial but, alas, can’t come. She told me that she tries to call her sister every day but she won’t hold onto the phone. Ugh.</p>
<p>first, dragon mom, I gave my mother two dates in the afternoon in August when I am available because I myself have MD appts in the morning. So I told her to make the appt for 3 or 4 pm or to wait till Sept. 17th. So I am being a little sneaky about my availability. I just must spend more time with my daughters, whether it be outings or just staying at home. Thanks for your thoughts. I am not sacrificing a day when we can go to Skidmore or Connecticut College of another LAC my going-into-10-grade is interested in.</p>
<p>Old mom, I’ll be thinking you, truly, on Sat when you have your memorial for your dad.I have no commitments that day and will think or you. I didn’t know at all that your have a brother who is very ill.I am so sorry about that. Am I right, you spoke to your step-mother’s sister? Oh…don’t expect her to come. She must be old and frail and far away…</p>
<p>Today is Wednesday. Best to you and your family on Saturday, I WILL be thinking of you. xxx.</p>
<p>Dharmawheel, my stepmother’s sister, who is 96 (stepmother is 93) is amazingly together for her age. She lives with her daughter in NJ. But the daughter, who would have brought her to Brooklyn for the memorial for sure, is away on a family trip.</p>
<p>This sister used to call my dad and stepmother’s house every single day to talk to her. I know she was very fond of my dad and I feel bad that she can’t come. But so it goes.</p>
<p>Dharmawheel – I’m sorry that the paperwork has been so brutal; sounds like NY is every bit as bad as California. </p>
<p>I’m new posting on this thread, and of course it’s sad, but here goes.</p>
<p>My Dad had a “silent” heart attack of some kind when my mother was dying about 15 years ago. Since then he’s had a pacemaker and defibrillator. He definitely slowed down. About 3 years ago we noticed a slight tremor in his hands and a shuffling gate. He had an appointment with a neurologist but before he could go he fell backwards off of a ladder and ended up in the hospital. It was dramatic but not too bad but it did set back his visit to the neurologist by several months and it turns out he had early onset Parkinson’s.</p>
<p>He is on meds for that and has exercises to do for his body and his voice but it is catching up to him and I know he’s particularly frustrated by his speech difficulties. He remarried a few years after my mother died but his wife has her own physical problems and they don’t live in assisted living or even in a place with shuttle buses to the grocery store. Her 2 daughters live close by with their families and they help out a lot. I am about 4 hours away (without traffic) and my sister is across the ocean. My Dad loves us but tended to forget us a bit after he remarried and it’s almost always my sister or I who calls him, not the reverse.</p>
<p>Still, he called me last week, cell phone to cell phone, while I was in a crowded restaurant and with all those distractions and his bad Parkinson’s speech I had great difficulty understanding him. It sounded serious though and I told him I would be coming to see him which I will do on Friday. I spoke to one of his step daughters who said that they arranged for home health care 6 days a week through his long term care insurance. I’m not sure how long that will last or how much it covers. </p>
<p>Adding to all this, we are selling our house here, moving 1500 miles away, needing to fix up the new house and needing to drive D3 off to her freshman year of college in about 2 weeks! </p>
<p>About the detaching before dying–my SisIL was rather different. She really tried to stay engaged until the last hours of her life. She was interested in food, visiting with all her loved ones, talking about her trips, and even watching “Finding Nemo,” with us. She had decided exactly when and how she wanted to die and was able to do it her way. She timed her death to the second that we touched down in Honolulu after visiting her in SF.</p>
<p>It sure sounds like there are a lot of folks with so much on their plates. My older loved ones are walking slower and slower, but still seem fairly interested in being engaged. They are in pretty good health, and we do count our blessings. Some have put their names on waiting lists for retirement communities (the waiting list varies from 1 year up to 2 or 3, depending on if you want the one, two or three bedroom unit, with varying pricing).</p>
<p>My D2 and a friend of hers just spent 3 days clearing out junk in my mother’s apt. She literally stopped them at the door, taking out the first trash bags, so she could go through them (and that continued.) Eventually, every time my mother was distracted for a moment, one would cram a pile into a bag and dash out with it (thank goodness we’re talking about a trash chute, not trash cans.) And she never did let them work on her master bedroom or even see it. </p>
<p>This isn’t really progress with my mother-- it happened because a visiting nurse of some sort did appear at the door, (part of evaluating for home help,) escorted by a building rep . My mother sent the nurse away, was outraged she came without warning, but they noticed bags and probably other chaos. A few days later, mgt gave her a deadline to resolve the mess. </p>
<p>I could make the whole tale pretty funny- the things she tried to save and why, her protestations, etc, but I’ll skip that. The girls saw the same humor in it. In a few days, I expect a call from my mother, telling me she passed inspection and how the mgt loves her and apologized profusely for coming unannounced, disturbing her and causing grief. </p>
<p>Welcome, greenwitch. I guess one blessing is that it seems siblings and step-siblings are pitching in together.</p>
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<p>Not all of our parents had that insight; my dad certainly didn’t. He stoutly maintained that he was fine living in his house, even though he was constantly falling, constantly screwing up his meds (including an overdose which resulted in a visit to ER), was unsafe to drive (which he also didn’t admit), etc. He did NOT want to go to AL. The first week he was there, he kept referring to “prison” and “incarceration”, and saying he was going to escape and go home (900 miles away). </p>
<p>I do think if Dharma’s father had protracted stays in a NH, it can affect the mother’s feelings- not only the circumstances, but what they represented. That doesn’t change the fact that AL or NH may be better all around. But maybe it changes how AL is approached. I don’t know. Even if her own NH experience was ok, it seems she knew it was temporary-?</p>
<p>I have a quick question. I haven’t been on CC for some time now but remembered that this thread was here. I don’t have time to read all through the posts to see if this info is already posted so please excuse me for jumping in.</p>
<p>I need to know if anyone has a good recommendation for the best product for nighttime incontinence. </p>
<p>My dad is 92 and has dementia. He just recently has started wetting the bed and the depends are not working in the night. The bedding is soaked. It has to be something that is at least somewhat comfortable as he is not real compliant with new things. Please hurry if you have experience here. We are desperate for help and mom doesn’t want to keep spending money on things that aren’t working. </p>
<p>Wildwood, something like this works well <a href=“http://www.amazon.com/Sahara-Extra-Absorbent-Washable-Underpad-White/dp/B000FEGUEQ/ref=pd_sbs_indust_3?ie=UTF8&refRID=0HRJN96MZ1ZHWM8WBDSV”>http://www.amazon.com/Sahara-Extra-Absorbent-Washable-Underpad-White/dp/B000FEGUEQ/ref=pd_sbs_indust_3?ie=UTF8&refRID=0HRJN96MZ1ZHWM8WBDSV</a>. When searching for the product, you want to look for something that is cloth and washable. They are pretty easy to find and somewhat ubiquitous. Much more comfortable than depends and better for the skin. </p>
<p>GTalum, thanks for the link. Because of the dementia he keeps taking the pads off the bed during the night. I am trying to find something that keeps the bed dry in the night. His skin can breathe in the day. He walks to the bathroom in the daytime, though with some leaking at times. He still is using the queen sized bed and mom has resisted a twin offer by me until last night. I am trying to talk them both into assisted living, but mom doesn’t want to go as she wants a place for my siblings to stay when they come in town…funny, they were all in town this summer and stayed at my house as her condo is not big enough. Even a hospital bed would be better. Her spine is crumbling from doing all the bedding every day. She now looks like the letter Z in a major way. I never know what time he will get out of bed to be there to help and she won’t call and tell me when he is up.</p>
<p>We were about to get a hospital bed for my stepmother when my dad died and the household was broken up. Medicare will pay for hospital bed. Much, much safer and goes up and down, mattress sealed under plastic cover. Go for it!</p>
<p>Dharma, your mom may be realizing that she can’t pretend that she can stay home for long. You can facilitate this by 1) never, ever, ever ever saying “I told you so” or implying it in any way, and 2) maybe making her think that it was her idea. Sure it’s not right and gives you no satisfaction with her, but it is what it is.</p>