Parents caring for the parent support thread (Part 1)

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<p>Like HImom, I have experience with peaceful and comfortable cancer deaths. I also know of families that struggled to help their relative achieve tranquility at the end due to a variety of complex variables. Here is where the hospice and palliative care teams can make a huge difference.</p>

<p>I wouldn’t be surprised if a bit of luck also enters into the equation. I think it is hard if the patient has wakeful, alert and interactive periods even as the end draws closer. Understandably, people may be less likely to up the morphine if there are exchanges to be had. My mother died quietly after having no discernible interactions for a couple of days. The staff took her vital signs and read any increased heart rate as indications that she was “working too hard” for this level of activity and also viewed it as a possible indication of pain. Thus, they upped the morphine and the end was tranquil. There were other extremely evident signs that the end was coming soon at that point as well. I valued the education those tending my mother medically gave me during that time. </p>

<p>Best to all facing these situations.</p>

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<p>Heading to Houston tomorrow morning to see my mom for her birthday weekend. I admitted her into this skilled nursing facility after her second hospitalization in 12 months while in assisted living, so it was time for the move. At the time of admit, they were working on getting Medicaid accredited, so I thought we’d be safe. Mom had just started receiving VA surviving spouse benefits, so that, along with her SS, could buy us a little time. I had a crazy year last year with health issues among numerous family members, and just never followed up on the Medicaid situation. As the savings my siblings and I put aside from our portion of Dad’s estate is almost bone dry, I wanted to start the Medicaid ball rolling. Shocked to hear that the facility is still not Medicaid accredited. Now the mad scramble to find her a place that will accept her as a Medicaid patient. I visited one place last year in the same city who is accredited, and they said you need to live there 90 days and pay out of pocket before you can qualify for Medicaid. I’m hoping this is still the case and I can get her in there, but I’m also going to look into facilities in my city, her hometown before Katrina, and see if I can get her in there. I hate to take her away from my brother and his two little boys, but I feel it would be better to move her closer to me now that she’ll be living only on SS at this point, since I think she’ll have to surrender her VA benefits, which I worked very hard to get for her, once she gets on Medicaid.</p>

<p>Another thing I am very concerned about is if she will medically qualify for Medicaid. She still uses a wheelchair, but she’s lost a lot of weight and is able to use a walker to get to the commode on her own. She still needs assistance with showering. She still is on Depakote. But, she’s no longer bedridden, like she was when she was admitted to the skilled facility, and I’m worried that her progress will prevent her from qualifying for Medicaid. She’s not independent enough to live on her own, even in those senior independent apartments, so I don’t know what to do with her at this point. She is 79 years old this weekend, and other than being in a wheelchair due to multiple fractures while she was obese and being bipolar, she’s in good health. She’s never had any heart problems or stroke, so I expect her to live another 10 years at least.</p>

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<p>Montegut- Your mother’s situation sounds complicated. What a year you have had…</p>

<p>This is not my area of expertise, but I am quite sure that Medicaid eligibility requirements and procedures for application vary by state. Gathering of financial records, some going back years are required, as well as some form of health/medical assessment. I can’t tell from your post how far your family has proceeded with this process on behalf of your mother. Government websites may be helpful with initial research. Just some general info in case it is helpful to someone:</p>

<p>Elder attorneys/accountants in the relevant states could be helpful with logistics, and in some states there are fee for service organizations that will coordinate the application and walk it through the system with/for you. When my parent’s status changed to Medicaid, the facility he lived in actually paid the fee for this assistance with the app. I did have to provide a variety of documents to them. The facility also contacted the organization that was contracted by the state to assess eligibility for the care level. I was told to expect that typically, people are approved for a few months initially, with a “permanent” certification to follow. In my parent’s case, the initial approval was a “permanent” one. </p>

<p>The “out of pocket for x number of days” first probably reflects the skilled nursing facility’s rule/preference; don’t think that is a Medicaid rule. As the private pay rate surpasses the Medicaid rate, many places prefer to admit residents who have some savings for private pay first. </p>

<p>If your relative is in the spend-down phase and their funeral arrangements have not been pre-paid, that is worth looking into before they are spent down enough to qualify for Medicaid. It is usually legal to set this up and ensure the funeral arrangements are covered. </p>

<p>As nursing home residents have most aspects of their lives covered with that fee, the small amount monthly of their Social Security or other assets that they are allowed to keep covers most expenses easily. In my father’s case, for example, he no longer has a cable or phone bill, and his expenses are mostly clothing and an occasional outing. </p>

<p>I don’t know if you are best off determining what state will be your mother’s residence before finalizing apps or if one app will cover more than one state. It will probably save a lot of aggravation if this is sorted out as you look at options. It may even be possible that eligibility would vary by state and thus, impact where the best place for her to live is. Potential facilities should be able to tell you a bit about eligibility and procedures as well. </p>

<p>Best with all this. Glad that some things are going better for your mother. She is lucky to have family support.</p>

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<p>I agree, I should talk to facilities in my state to see what their requirements are and whether Mom would be eligible to come back home. One good thing about her progress is that I could probably put her in a car and drive her from Houston at this point, whereas, a year ago, I would have had to hire medical transport. Remember my thread on that one?</p>

<p>I did look into funeral arrangements when Mom was admitted to this new facility and got prices, and I was told that a funeral plan would not be considered an asset by Medicaid, like life insurance sometimes is. Mom does not have a life insurance policy, so when she dies, we will have to pay for her funeral if there is no plan in place. Been there, done that. Most of my siblings and their spouses, including mine, have been faced with having to pay for their parents’ funerals out of their own pocket because the elder did not have a prepaid funeral plan. </p>

<p>This funeral discussion actually got my wheels turning that maybe I should try to get her back home. Even though the other city’s funeral home was the same group as the funeral home back home we use, they do not honor each other’s plans. I do hope to purchase a funeral plan to speed up the Medicaid coverage and at least spare our children from having to pay for their grandmother’s funeral, as she is likely to survive her children.</p>

<p>I will read back through this thread when I have time, and hope I can share any knowledge I gain through this process.</p>

<p>Thanks so much for all your help and wishing you all best of luck as we deal with our roles as the Sandwich Generation.</p>

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<p>Travelnut gave good advice on seeking an expert in elder care regarding Medicaid applications. We were advised to start the application about 6 months before we have completed the “spend down” of mom’s assets. The government does allow you to prepay for funeral arrangements. Make sure that your family members have not “gifted” to someone in the last 5-7 years as that money will be deducted from the start time of medicaid reimbursement to a facility. My mom had wanted to look at an extended care facility in NY, we live in CT. We were told by the facility that NY Medicaid requires a residency of 90 days prior to reimbursement. Perhaps that is what the case is Montegut? These applications are complicated and done when you are emotionally spent. Any expert advice is worth looking into.</p>

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<p>travelnut, thank you for posting about your mom’s tranquil passing. We haven’t yet come to the “go/no go” moment, but it’s coming. I think it’s natural to want to hang on, to squeeze out every last moment of life. But at ages 89 and 87, my parents have had very full lives and they’re already living on borrowed time. At this point, quality of life, and – when it comes – a peaceful end are far more important than a few more days, weeks, or months, especially if that extra time would be spent suffering. I also believe (but haven’t yet had to put it to the test) that in some cases, the person really is ready to go, and we don’t do them any favors by clinging to them and trying to postpone the passage. It’s not always clear-cut – nothing ever is with these people! – but if we come to that moment, I hope I can let go gracefully. I need to be prepared, so thank you for reminding me.</p>

<p>I did have to fight for my dad’s quality of life at one point. He takes several narcotic pain medications for intractable back pain. Once when he was in the hospital, the hospital doc was advocating quite strongly that he be taken off them. He said, correctly, I’m sure, that the medication is causing some of Dad’s problems and may even shorten his life. But without the meds, my father is miserable. On his behalf, I insisted on quality of life over quantity of life, and I do not regret it.</p>

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<p>cortana, thank you for posting about your family’s situation. You’ve seen how difficult this is for both your father and grandfather, and I’m sure the whole family is feeling the stress. You only need to read a page or two of this thread to see that this is hard for everyone who has to go through it.</p>

<p>You didn’t ask, but I’ll just throw something out there for you to think about. Sometimes when my college-age D has seen that I’m about to explode from the stress, she’ll just come up and ask me, “Is there anything I can do?” A few times, I’ve asked her to help me with my stuff – empty the dishwasher, run an errand. A few times, I’ve asked her to do something for her grandparents – pick up their prescriptions, take their dog to the vet. Just little things. But this feels like a very lonely business sometimes. Her seeing that I’m at a low point, and offering her support, makes all the difference.</p>

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<p>So here’s the latest in the saga of my mom:</p>

<p>Turned 97 two weeks ago. We thought she’s never make it. Under Hospice care following a period of time at a hospital. The visiting nurse deemed her “imminent” last week and I arranged Last Rites. Many siblings came to say good-bye. But she rallied and had a great few days. This weekend, she has an absessed tooth. She’ll need an ambulette to take her to the dentist for an x-ray and treatment. She can barely eat due to the pain (not because she has no appetite), and her morphine dose has increased as a result. Whew! I often hear the last few months of a person’s life are often the most expensive, but this added complication is not one I ever expected.</p>

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<p>Wow. So much new, complicated, and sad stuff going on here. I feel for your all so much. I feel truly sandwiched, not only between my senior and trying to work with the financial aid office on an aid appeal (husband lost job Dec 1), but my junior who needs to develop his own list of schools, keep his grades up, and take SAT’s on Jan 26th. We have an appt with an elder care attorney in Feb to decide how to handle Mom’s money. Her dementia makes her not very viable to understand all the money stuff. Her secondary insurance ran out on Jan1, as well as her prescrip coverage and even though my sister is supposed to be the “paperwork and financial” person, she seems to think I have to do the Medicare stuff because I live in NJ and she lives in VA. She is not computer savvy, and does not even know how to set up a pin for my mom’s bank account to keep track of the money without having to rely on just the monthly statement… We JUST learned that instead of just getting her own SS, mom actually will receive Dad’s SS, and it’s hers (the lower amt of the 2) that will go away. That will give her $1100 more a month, so at least that’s some good news… but sometimes I just wish I could do it all (it really would be too much, but I just don’t really trust her $ knowledge) It reminds me totally of what an earlier mom mentioned on here about whether or not to count on the sister. I second everyone’s motion to take the help when you get it, but not count on it. </p>

<p>It is SO hard to decide when enough is enough. I was SO confident in hospice as something my dad would have wanted, to die at home and to not extend his life. But when I thought he had a lung infection at the end, the thought of letting him die of an infection just sounded wrong. Turned out it was really his lungs just shutting down and within 48 hours of noticing a change in respirations, he was experiencing extreme fluid in his lungs that he did not have the strength to cough up. I had heard of the term “death rattle” but was not prepared for it in any way shape or form. I actually felt mad at my mom that when she heard it in the middle of the night, she felt like she couldn’t call anybody because it was the middle of the night… that is the night I REALLY second guess myself about. But how could I have known? So I wish his morphine had started about 12-24 hours earlier than it did… that last time was not peaceful, but his last breaths were… </p>

<p>Cortana,it is so very sad to see their health deteriorating and to see them finally realizing that they can’t do it on their own. Getting old is a part of life and it certainly does suck!</p>

<p>Lima - Can’t believe what your mom is continuing to hold on through! I hope the pain improves with the treatment of the abscess, and that she rallies again!</p>

<p>Yes, hospital visits can be disorienting and cause the dementia to spike.</p>

<p>My dad was most definitely NOT nicer since his stroke. In the end I felt super bad for my mom, as he would yell and swear at her… his dementia and aphasia were horrible and it all got progressively worse. He lasted 2 days short of 2 months after being discharged from rehab. The second he had that stroke, I knew things were going to change… and boy did they… </p>

<p>OH, and lastly, today mom fell at assisted living while she was taking a walk outside… Landed face first on the concrete… all is well, though she looks like she’s been in a bar fight and she is down to one pair of glasses which I’m sure she will promptly misplace by tomorrow… and my job is to just be patient with her… not my strong suit, but at least she feels like I am much more patient and caring than my sister and I am the one she prefers to live near. :)</p>

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<p>Bonnie, you got so much good advice from everyone about hospice. You have taken great care of your mom and I hope you feel confident in choosing what she would have wanted…</p>

<p>Lashain - our moms seem to be in similar situations, except mine is officially in the “assisted” part, not the independent living part. It felt quick to to this so shortly after dad died, but the memories in the house were very hard, and looking around the house made her quite overwhelmed. I’m sure it was similar for your mom? Do you know have to sell the house?</p>

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<p>An alternative that worked for us was to buy an insurance plan that would transport the body of the deceased back “home.” For us, that meant they shipped my FIL’s body back to HI from SF, which was a HUGE savings for us. We had his services and burial here, where most of the friends and relatives live and buried him beside my MIL. That can sometimes be easier than trying to get an older person to move and possibly confusing and upsetting them.</p>

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<p>Montegut: Regarding the prepaid funeral plans, you need to find out what the maximum $ amount is for that plan in whatever state your mother will apply for Medicaid. I’m sure each state sets their own limit for what’s allowable. I went through this before my mother applied for Medicaid. With my mother, she was able to apply for Medicaid in the state where we both live (CT), but get a prepaid funeral plan for the state where she’ll be buried (NY) as long as the dollar amount wasn’t greater than what CT would allow.</p>

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<p>ECMotherx2- Thanks for that info. about 90 days before Medicaid payment likely being related to state residency requirements for the Medicaid program. This could impact options significantly. All of these regs are complicated and some vary significantly state by state. It is worth it to find local expertise and assume nothing. The stakes can be very high when someone is in urgent need of care and assets need to be used wisely. </p>

<p>The issue I was referring to was a different one (not Medicaid regs). Skilled nursing facilities often have a preference for private pay before they receive Medicaid. Not sure of how it really plays out on the ground or what the legalities are, but several elder experts urged me to have several months worth of nursing home care in the bank for each parent as it would help with admission to the more desirable places. Initially choosing an option (such as assisted living) within a multi-tiered facility can be very advantageous as usually, the access to the next level of care prioritizes current residents. Also, having familiarity with the place creates great continuity of care and experience. I have valued this so much- not having to start over with every change in health circumstance.</p>

<p>LB- your mother’s tenacity is amazing and requires the same from her family. Hope that she is comfortable and you are able to take care of yourself also. </p>

<p>Good thoughts to all facing these challenges.</p>

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<p>The senior care advisor we hired to help us just sent this information on taxes and assisted care expenses, thought I would pass it along:</p>

<p>Important Tax Information For Long Term Care The holidays are behind us and Spring is on its way, and for most of us so is tax season! We recognize that the cost for in-home care and care management can be significant. We want everyone to know the potential income tax deduction for our services. The IRS Publication 502 for Medical and Dental Expenses contains the details and definitions for expenses that qualify for tax deductions. </p>

<p>Here’s an excerpt from IRS Publication 502, page 11: </p>

<p>Long-Term CareYou can include in medical expenses amounts paid for qualified long-term care services and premiums paid for qualified long-term care insurance contracts. Qualified Long-Term Care ServicesQualified long-term care services are necessary diagnostic, preventive, therapeutic, curing, treating, mitigating, rehabilitative services, and maintenance and personal care services (defined later) that are:
Required by a chronically ill individual, and
Provided pursuant to a plan of care prescribed by a licensed health care practitioner.
Chronically ill individual. An individual is chronically ill if, within the previous 12 months, a licensed health care practitioner has certified that the individual meets either of the following descriptions.
He or she is unable to perform at least two activities of daily living without substantial assistance from another individual for at least 90 days, due to a loss of functional capacity. Activities of daily living are eating, toileting, transferring, bathing, dressing, and continence.
He or she requires substantial supervision to be protected from threats to health and safety due to severe cognitive impairment.
Maintenance and personal care services. Maintenance or personal care services is care which has as its primary purpose the providing of a chronically ill individual with needed assistance with his or her disabilities (including protection from threats to health and safety due to meals that are not part of inpatient care. severe cognitive impairment).
We encourage you to consult your tax preparer regarding potential tax savings as we are not qualified to give tax advice. Please call our office shouldyou need help from one of our licensed health care practitioners to complete a certification of chronic illness or, if you have additional questions including referrals to tax experts who can help you with these matters, feel free to give us a call. As always, we appreciate your confidence in us and the opportunity to serve you.</p>

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<p>my3gr8boyz, regarding your mom’s fall at Assisted Living – My dad is a faller, and that was one of the main reasons we decided on AL. Before they moved, my mother used to lie awake at night, listening for the crash, and then of course it was panic city every time it happened. Now all they have to do is push their button, and staff comes immediately to check for injury, and then either hoist him back up or call 911. It’s such a big weight off Mom, and us, knowing that there’s someone there to handle it. (Naturally, he STILL feels he doesn’t need a walker. <em>sigh</em>)</p>

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<p>Grandpa seems to be doing better…the hospital stay revealed that the poor kidney and liver results are most likely due to complications from medicine he was taking from medicine after having a root canal, so he will probably be discharged soon. Grandma was poor though; her alzheimers was getting pretty bad and she can’t be left alone anymore, for her own safety.</p>

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<p>So my mom died yesterday. She had an absessed tooth which became infected and that quickly spread into her blood causing sepsis. It was a painful week, but really, didn’t suffer long and even then she was getting morphine. She had a wonderful, healthy life. As her friend said to me when I explained, “She would have died somehow anyway; we all do.” Now we’re busy arranging the funeral and writing the obituary. I knew this day was coming, but I was also in denial. Thought she’d live forever.</p>

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<p>Hugs and prayers limabeans.</p>

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<p>Limabeans- Thinking of you and sending condolences. Take good care.</p>

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<p>Hugs to you, LB. I’m so sorry for your loss.</p>