Dharma humbly returns and asks to continue discussion

Parent Cafe
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<p>Over the past few months, oldmom has posted three links to articles about elders and the caregiving children, sibling issues, and another fascinating topic I can’t pinpoint right now. In the blur of rushed time I did not print them out when I should have (immediately) and now I can only find (and printed out) the article from Slate. I went through almost 50 pages of my thread and could not find oldmom’s links to the two NYTimes articles I am dying to read. She may have posted the link on the Elder care thread which to me would me would be impossible to find. Maybe if I type oldmom in the search forum box…</p>

<p>But reviewing those 50 pages backwards,it made it abundantly clear to me how so many people were reaching out to me and offering generous, experienced and intelligent guidance. As oldmom told me, the story doesn’t end. Attended a “caregivers” meeting today at the skilled nursing home where my mother is now a permanent resident, I was shocked in its lack of professionalism. I basically lead the discussion myself. No one at the table even had the courtesy to introduce herself. The Nursing Supervisor was unaware of one of my mother’s major medical issues. I had to ask her, Are you the Nursing Supervisor? What is this stupidity? They asked me to “get” information about my mother’s pacemaker when it was clear that a phone call from the NH to the Hospital was the best–indeed, the only way–to get accurate and complete information about my mother’s pacemaker. It was absurd that I would have that information. Additionally, the SW asked me to get the most “recent” psychiatric docs on my mother when she went to a private practicioner. The “most recent” docs are meaningless. He knew her so well, he only scribbled notes, I presume, but for sure–I’m sure he was only making minor notes, not deep profiles. I quietly insisted that the NH psychiatrist call Adele’s psychiatrist of 40 years and make a PHONE APPT to talk about Adele’s 40 years of treatment.</p>

<p>My mother’s speech was incoherent, paranoid, and delusional. She is a completely different person than the woman she was in early June.</p>

<p>I met with the septic Engineer and diggers on Wed and the engineer found a new place to put the fields; the trees in the back to my relief do NOT have to come down. The Engineer’s fee alone is $8,000 and the septic installation (I cannot imagine why) could range from $20,000 to much higher. There is little showing of the house, even though the blurb opens by saying, new furnace installed in basement; new septic system being installed, and goes on to mention the many attractive features of the house. We have reduced the price to $210,000.</p>

<p>We can take it slow. But I would like to come here for guidance and feedback, because I need it. I feel perfectly fine, but there is one odd thing: my sleep has changed entirely. Instead of sleeping through the night, I wake up almost hourly and sometimes get up at 5 am, make coffee, and do little projects to organize corners/drawers/ etc of the house (three children and a husband who likes to hold on to yellowed newspapers). I make 6 am trips to the dump while the family sleeps. </p>

<p>Oldmom, I will send you a PM, but would it be a trouble to you to give me those two NYTs links?</p>

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<p>I’m so glad you’re back, Dharma. How did your mother transition to the NH? My own mother has been see sawing between AL, hospital and NH/rehab and the transitions can be really destabilizing. I think the caregiver quality issue varies widely by facility and region but the low pay and tough work often lead to significant turnover and understaffing. I’ve no doubt that by visiting and making yourself known you are ensuring she doesn’t slip through the cracks.</p>

<p>I’m sorry the house continues to be such a drain. It’s a tough time of year to sell a house (and for that matter I assume to get a new septic field installed as I assume the ground freezes in your area). Is your plan B for financing Adele’s care still in place?</p>

<p>And how is the rest of your family holding up? It’d be great if you can transition to focussing more on your husband and girls over the holidays. My hunch is that you would sleep better too :slight_smile:</p>

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<p>Hi Dharmawheel,</p>

<p>On the septic front, I’m glad the trees won’t have to be removed. We were lucky (and it was sheer luck) that despite all MIL’s deferred house maintenance that we didn’t have to do a lot more than painting, carpeting and fixtures and a host of minor repairs. I’m sorry that you’ve got so much more complex a situation with the septic system. Still, we probably spent somewhere around what the septic system will cost; it was just spread among so many different things. </p>

<p>I’m sorry that Adele isn’t mentally more with it, but I’m glad that she’s in the nursing home. I hope that her long-time psychiatrist can provide her current doctor with some useful suggestions. It may be that her current condition is so substantially different than a year ago that the treatment options are a lot different now as well. Dementia can present in many different ways – and I have no idea how that layers with existing psychiatric conditions. Still, she’s in the place where she is safest.</p>

<p>You’ve had a very rough six months (or more) in this acute phase of transition with your mom. Now that her placement is settled, it would be good to focus on care of yourself. Might massage, acupuncture or melatonin be worth trying to see if it improves the quality of your sleep? Getting up at 5 isn’t particularly an issue, and if you’d like some more drawers to unclutter you could certainly come visit – but waking up hourly is not at all restful. </p>

<p>(Minor sleep question: when you look around your bedroom in the dark, how many things glow at you? We were on vacation last week, and the house we rented had a TV, a nightlight, a clock, and an alarm light that all glowed in the dark. I spent a few minutes covering those lights up and slept much, much better. Here’s an article talking about sleep disruption from lights: <a href=“http://www.washingtonpost.com/national/health-science/blue-light-from-electronics-disturbs-sleep-especially-for-teenagers/2014/08/29/3edd2726-27a7-11e4-958c-268a320a60ce_story.html”>http://www.washingtonpost.com/national/health-science/blue-light-from-electronics-disturbs-sleep-especially-for-teenagers/2014/08/29/3edd2726-27a7-11e4-958c-268a320a60ce_story.html&lt;/a&gt;&lt;/p&gt;

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<p>Woke up after a nearly sleepless night and had to get up, take the dog out, make coffee, and face CC to see if there were any responses, afraid of backlash and full of mixed feelings about restarting a thread. I feel like I need an IV tranquilizer. Thank you 3Trees and arabrab for your kind responses. I am seeing a therapist as recommended but I don’t think she will “get it” because I don’t just feel mentally but bodily sick and she doesn’t have an aging/in crisis parent of her own, and I don’t think any “rethinking remedies” will have an impact on me; I recognized during my silence that posting here–said with emphasis–and hearing from people who were further along on the road of living with the situation of a declining parent was actually like the support group I had 20 years ago with parents who had actually lost children themselves. I don’t intend at all to post vigorously, just ask a question here and there, and learn from others who have lived through and beyond similar experiences. And hope to keep a small discussion quiet and gentle. As for questions, for instance:</p>

<p>My mother’s mind is slipping fast. Even since Thursday. She told me she had slept for two full days without waking. I asked the nurse at the discussion about this and she said no, of course not, she has been up and about and we wouldn’t let someone go without meals. Why does this even have an impact on me, make ME feel like I need to check into a psychiatric hospital? Why can’t I think, Gee…old age…wow your mind really wanders…too bad. And let it go? </p>

<p>Second question: I have been there often since she entered the NH (I believe it was Nov 7) and have been very visible talking with the Social Worker, chasing after aides to take my mother to the bathroom, which she needs every 15 minutes it seems, filling her room with photos, nicest clothes, shelves of books…I’ve even gone down quite early a few mornings to drink water while she drops her breakfast in her lap. My presence, as far as staff/aides attention, seems to make no difference. It is “okay.” It is “so so.” This nursing home has the vastly best reputation of any in a wide, wide area, and I was shocked at the meeting that the nurse asked ME to get information about the pacemaker. It is THEIR job to get that information from the HOSPITAL and MD who installed the pacemaker and the nurses that were attending. And it is not MY JOB to be a courier from my mother’s psychiatrist to the NH. THEY HAVE A PSYCHIATRIST. Obviously is is HIS JOB to contact Dr. G. This is insane.</p>

<p>So second question: I don’t think I can live my life like this. She has lost the sense of time and place. Her care is adequate. Can I go once a week, tell myself I’ve done the best I can, and more or less put this behind me?</p>

<p>Good to know: The Assisted Living (8 days of residence) is refunding my mother $17,000.</p>

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<p>Just wanted to point to a resource: I’m not sure if you have to be a paper subscriber to the New York Times or not. I am, so I can log in with a password. In the search box I typed in “adult children aging parents” and the titles of articles relevant to discussions here, and very many acutely related to my journey, is astonishing. The articles are listed by “relevance” and I even saw one going back to 1964. Some people don’t like reading articles (or posts) on a difficult subject; I do; I find them helpful. </p>

<p>I’m going to spend the day photocopying all the copies of the Federal and State Tax returns needed for Medicaid; my lawyer says they want EVERY page and some other related document I have to find out/worry about/how-where to find it.</p>

<p>The house and the Assisted Living apt are completely empty. No one is looking at the house in this season and the price is greatly lowered. I brought a great many of her nicest clothes to the NH. Many many boxes of small things and all her clothes had to go to my garage. She had enough clothes for seven people. I couldn’t stand to have them near me and donated about 12 hefty bages of clothes to the thrift shop. The knick knacks (including bronzed baby shoes) will have to wait till I have more fortitude; I did too much.</p>

<p>The impact seeing my mother had on me yesterday is searing. I have to see what these articles have to say about this kind of reaction and what advice they give. I am so doubled-over that it took me about 10 tries just to type my CC password in right. </p>

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<p>That’s great news about the refund, Dharma.</p>

<p>To answer your most pointed question, yes you can go once a week. Your mother most likely won’t note the difference (or at any rate may not be more likely to abuse you than she is already). As is often noted here on CC, usually in reference to a struggling child, you have to put the oxygen mask on yourself first. It is great that you have sought out a therapist, even better that you have discerned early on in the process that she is not likely the best fit so you can keep looking. Making time to address your own physical and mental health needs has to be a priority now. Driving around while chronically sleep deprived and stressed out is a very real risk to you and to others. Your mother is not in crisis now, but through twisting yourself in knots to care for her, you may be soon. (I say this with respect and concern).</p>

<p>Last observation, from left field. At an earlier time in my life, when I felt almost completely undone by an intractable health/mental health issue in a loved one (and my inability to make situation better, in fact I seemed to be making it worse) I made the decision which seemed illogical at the time to go back to work. And in fact the structure and stimulation and the sense of efficacy of my job were and are hugely helpful. Knowing I was contributing at work and to our ability to retire with some comfort gave me (and my husband and kids) a much more positive outlook. This doesn’t seem like the right time for you to do this, but I offer it for future consideration.</p>

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<p>I too am glad you are back Dharma. I also had an eye opening care plan meeting at my mother’s NH. The lack of preparation was troubling. The bigger issue for us was the number and types of drugs she was prescribed without our consent or knowledge. We asked to see a list of her medications and found that she was on several antidepressants and an antipsychotic. We demanded that she be taken off of those. I suggest to you that you get in writing that no medications can be prescribed without your consent. Are you her healthcare proxy?</p>

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<p>And let me echo Knitkneelionmom in welcoming you back. I think visiting your mother once a week is fine. </p>

<p>At times I have struggled with insomnia. In fact, just last night was such a night for me. Tonight I am planning on taking generic Benadryl, which usually works wonders for me. </p>

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<p>Dharma – once a week is fine, and no need to feel the least bit guilty about that. Great news on the refund from the AL place. </p>

<p>Suggestion: Consider hiring a care coordinator <a href=“http://www.caremanager.org/”>http://www.caremanager.org/&lt;/a&gt; who can work on a consulting (hourly) basis to figure out what your mom needs at the nursing home and negotiate as needed with the nursing home. You’re not likely to become a specialist in this, your mom is painful to deal with, and the stress on you is not worth it. I’d rather see you have short, minimally unpleasant visits to have tea with your mom and not spend your time trying to figure out how to navigate the complexities of nursing home life. </p>

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<p>Dharma, I have followed your story, and have kept you in my prayers. I have had several good friends walk your journey and that is how I came to cope with dealing with my mom and her end of life needs.</p>

<p>One suggestion would be to hire someone to visit your mom when you can’t. Is there anyone you know who might want to earn some extra money visiting her a couple of times a week. Maybe just $10/hr. Suggestions could be someone who is retired, under/unemployed or maybe a nursing student. Just 2 hours a week at their convenience would give you an additional set of eyes and keep NH on their toes. That would also enable you to learn of anything that might change if you went only once a week. </p>

<p>Also, while this is a difficult subject, keep an outfit for you mom after she passes away. My SIL and I pulled a couple of my mom’s outfits that we thought would work for her after she died. It needed to be long sleeves and high neck, if possible. </p>

<p>Be prepared for your mom’s clothes to become shabby and/or disappear from the NH. A dear friend’s aunt was in a nursing home. When visiting her, my friend asked what the aunt had done that day. The aunt said she had been shopping for clothes. My friend asked where, and her aunt took her to someone else’s room and went into the closet. The aunt was a bit out of it, and thought she was shopping instead of just taking clothes from other residents. </p>

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<p>Right on target. My mother must be on Depakote for her bipolar disorder. But I was troubled when the nurse read out the long list of medications she was on in a monotone not-caring voice without explaining to the adult child–ME–patiently, what each drug was for. If I were inher place, I wouldn’t have given a second thought to doing just that. Isn’t it pure common sense? Where is the professionalism that I clung to in my earlier career? But my mind was filled with so many questions/frustrations at the meeting that I didn’t do that (ask her–maybe even with a touch of sternness–what each medication was intended for). . (Yes, I am her health care proxy - my mother did a superlative job of record keeping; every detail is laid out perfectly and makes all the paperwork I now confront as easy as possible.)</p>

<p>Each day besides the stress I am hugely productive - cleaning, helping spouse and children, have almost completed the Medicaid application; for each specific question I had for the Supplement A and the application itself, I sent a clear, easy to follow–and answer–email to the Director of Finance at the NH today; it is her job to help adult children fill out the Medicaid applications. This afternoon I read all the essays I printed out from Slate and the NYT. Very illuminating. I am getting all my mother’s “knick knacks” ready for the thrift shop in time for Christmas.</p>

<p>But I would like to address the many who helped illuminate me/struggled with me over the past few months. I completely realize that this should wind down; this is no longer about my mother’s health issues but about how I need therapeutic health coping with my mother’s decline; I came to a vital place (CC elder care) where issues dealing with an elder’s health issues are concerned, not an adult’s child’s anxiety, which is properly dealt with privately with a therapist, which I am doing and will keep on ongoing . So we can let this thread decline gently; I know how to deal with the support team at the NH and I know that my own emotional issues must be addressed by a therapeutic professional, not here on CC. I will be glad to respond to posts, but don’t feel I warrant and deserve the intense and threshold-breaking advice my prior thread led me to. Thank you to all, if you notice this, who helped me so much, you know who you are. I respect your withholding and your silence. My mother is now in long-term skilled nursing care; I certainly have enough wits about me to deal with the sale of her house; the septic issue; her debts. My simple uncertainty is about how often to visit her because it takes such a toll on me. Several people above said once a week is sufficient. I wonder. This is my stumbling point. The many articles I printed out from the New York Times were very useful. I will struggle it out with a professional. Let’s take it easy. If anyone posts, I will be glad to respond and update. Thank you.</p>

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<p>When my mother was in assisted living I visited her once a week. Once she moved to the NH I felt the need to visit her twice weekly. Frankly, I was uneasy about her placement there especially with them over medicating her. Her health and mental state declined rapidly until her death, only a few months after her admittance. I was better able to monitor things with more frequent visits. Sad that she had to spend her final days there.</p>

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<p>I hope the week is going better for you, Dharmawheel.</p>

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<p>How kind of both of you to write. I feel more comfortable now that my thread is “small.” Good news. In a matter of hours, my realtor called me last night to say that a couple who viewed the house twice made an offer. Our (twice sadly lowered price) was $210,000. They offered $200,000 and we countered at $208,000 and they accepted. Luckily they are working with our same exact realtor so that will prove smooth sailing. The realtor assures me that they are committed and eager and want to close as soon as possible. They have a pre-approved mortgage of $225,000. Can you imagine how much money we had to spend to get the house issues repaired? Almost $50,000. The SAINT who owns the septic co (whom we have already paid $$1,500 for an intense inspection and a digging project to locate a good site for a new septic) has agreed to wait for his payment for the septic installation to within 10 days of closing, and it may be as high as–are you ready?–$35,000. So the new owners are getting a steal. I hope they are nice young people. We are selling my mother’s house at a lose, but it can’t be helped. As soon as she gets her money from the sale, all the money will go to the NH until her assets reach $14,000, and I will have to apply for Medicaid all over again. </p>

<p>I have been reading many articles about rapid onset of dementia and must speak to my mother’s MD or the Nursing Supervisor on Tues (Mon I am taking DD2 to visit a college). My mother’s decline into dementia is NEW and FAST and very obvious to anyone who has known her, I’m sure, since she entered the NH on 11/4. In October, at the AL, she was able to speak in articulate, intelligent sentences and express herself coherently. She was feeble mentally at Thanksgiving (I went with DD1) but today it is unclear whether she recognized us. She answered or repeated everything we said with a completely incoherent response. The rapid decline into dementia is unbelievable. She tells me she sleeps “for days” so it lets me off the hook about visiting because evidently she does not know one day from another, but I must keep in close contact with her MD/Head Nurse. The easiest way for me to visit is to zoom down there to join her for breakfast after I drop my girls off at school at 7:30 am. I can get home and pull myself together for the day after that. The tremendous anxiety, fear, and confusion and just feeling like I was “losing it” that was evident from my past posts in Aug/Sept/Oct is gone now that my mother is settled, and speaks and acts as if she is comfortable. We always bring something from home, a pillow that was special to her today, her wheelchair pad, etc. </p>

<p>The fact is my mother is declining fast, and according to what I have read, her life expectancy is uncertain, but she may not last long. </p>

<p>I have a big job with the Medicaid application, much bigger that i knew at first, but like a professional I will apply myself and get it done.</p>

<p>The story is winding down. Myself, I am feeling fine. My own little family is fine and because my girls are adopted from China I can say without boasting, they are first in their classes. And I am definitely not a helicopter parent. It is their innate intelligence, curiosity, and work determination. DD2 is taking AP Computer Science online–a very difficult and demanding course–and has a 100 average/ Her on-line teacher sent me a personal email to say that if she continues this way, she will get a 5 on the AP exam. You see, my focus has shifted from the burden of my mother to my own small family. If anyone from my past thread who was so helpful–so many people-I owe you so much, I really was unstable, and you guided me clearly and intelligently through episodes and situations where I would have made mistakes. I hope you read this, because I am so grateful to you and will never forget with. I understand if you do not post, but I do hope you read this, because I thank you from the bottom of my heart for being my solid groundpoint during the crisis months. I cannot thank you enough.</p>

<p>FYI: The Medicaid application is staggering. But I will apply myself, work hard, and get it done.</p>

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<p>Welcome back and <<hugs>> to you and your family!</hugs></p>