Parents caring for the parent support thread (Part 1)

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<p>MomofJandL, unfortunately it doesn’t sound like there’s a lot you can do to push some decision-making, if the children won’t. When the crisis comes, and it will, it’s going to be tough with no one knowing what’s going on or what to do, and the parents no doubt insisting they don’t need help with anything. </p>

<p>Good perspective, though. With toddlers, we look forward. With aging parents, we look backward. Some of the best times with my parents these days are looking at photos from days gone by. It takes all of us out of the present difficulties, for a little while.</p>

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<p>Not only will nothing happen until there is an emergency, but I am continuously raising my definition of what is an emergency. MIL can’t walk well enough to get into the house after a doctor’s appointment, and FIL isn’t strong enough to help her? So far they’ve called 3 times in the past week for DH/DS to come by, but FIL doesn’t want a wheelchair ramp because the neighbors would see it. </p>

<p>They have POA for each other, but the kids, all in the area, have no POA for them. They have living wills and medical directives with the doctor, but the kids don’t have copies, and they haven’t had a family discussion about their wishes. </p>

<p>One bright spot is that yesterday, while waiting for MIL’s knee to be looked at at the ER following a fall, FIL fretted to DH that the visiting nurse (who just comes a couple of times a week to check on MIL and take blood samples) said they should consider assisted living, but that they don’t want to live apart, and don’t want to leave their home. DH renewed his offer to help hire someone to help with accessibility improvements to the home, and to interview companies that can provide home health aids. FIL agreed (for the umpteenth time) to get right on that. Soon. Real soon. OK, then.</p>

<p>We should be fine figuring out finances if we ever need to, since it does not appear that they have thrown out one piece of mail in the last couple of years, so the paperwork should all be at the house somewhere. Ok, now I’m just ranting.</p>

<p>My kids have great memories of times spent with grandparents, I’m trying to tap into those instead of building up anger over the current status.</p>

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<p>MofJL</p>

<p>Your problem is almost universal. But. Do not be discouraged. Eventually you will prevail.</p>

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<p>I apologize if I am repeating what has already been posted. I have only skimmed the thread. </p>

<p>I just wanted to pop in to say that anyone who is reading this post because you have parents, in-laws, etc. who need more help or MAY need more help in the next few years, GET TO AN ELDER CARE ATTORNEY. We have learned over the last few months, when things took a turn for the worse for my mom, that there are some things (finances) that you may want to have in place up to 5 YEARS prior to a possible move to nursing care. Other things have been more challenging to take care of simply because now mom can’t go to the various offices for appointments and to sign papers. Similar to the college admissions and financial aid process, it is a whole other world, and you will be much better off if you start to learn about it now, not when you suddenly need it. Find an attorneys that specialize in elder care know the ins and outs of the system.</p>

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<p>It is a psychological thing. The legal part is easy, a lawyer WILL explain the rules how to get medcaid, but to convince an elderly to relinquish all their hard earned assets to a third party, even blood relatives is difficult. Especially if they feel they are capable to manage their lives. To look 5 years ahead of the game is such a drag to their mental health.</p>

<p>In my mom’s case, it just never happened. And one of my cousin just called me about my aunt won’t do that either.</p>

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<p>MomofJandL, it is OK to rant here. We can all relate.</p>

<p>I don’t know if this is good news or bad, but sometimes when seniors are intransigent and kids can’t or won’t intervene, the situation gets resolved by a hospital case manager. If the senior is in the hospital and the case manager gets wind of the fact that the home environment is unsafe, or that there are no capable caregivers, then by law they CAN’T send them to home. If you wanted to push the issue, you could drop a hint in the case manager’s ear next time one of them is hospitalized. At the very least, maybe they could get some home care that is much more extensive.</p>

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<p>I don’t know in other states, but here in ca the Medicare is not covering AL or SN. In a recent round of hospitalization, mom was put into Hospice, the case manager told us since there is no rehab, no money for after hospital care, Skilled Nurse Care costs $200~$2000/day and we cannot stay overnight even we want to.</p>

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<p>The two posts above just gave me a thought, which is the kind of thing that keeps me coming back here. MIL/FIL have probably been getting most of their info about post -hospitalization care from hospital case managers, who might tend to tell them a lot about what Medicare and their medigap policy will cover, but not as much about what they can pay for privately.
They don’t qualify for Medicaid, and Medicare will only pay for rehab care, not just maintenance nursing care.
I tried to get DH and SIL to talk to the case manager the last time, but the timing didn’t work out. FIL shouldn’t be allowed to take MIL home this time - she needs to be transported by ambulance, or someone that can get her safely into the house. Maybe I can get someone at the hospital to insist - unless they’ve sent her home already, in which case our phone will be ringing soon.</p>

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<p>I’ve found that the most useful person to talk to at the hospital is the person in the position of Discharge Nurse/Doctor. I had no idea this position even existed until last month. </p>

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<p>What happens to people in this position who have no family and no one to act as an advocate? Does Adult Protective Services step in?</p>

<p>I wonder this because my family has been available to support our elderly friend, but what if we hadn’t been there? She has no one else.</p>

<p>My MIL continues to refuse most food and drink (age 95). It’s been 2 months and I’m truly amazed she’s still alive. Meanwhile DH’s dear uncle passed away. He and DH’s aunt live in the same continuing care facility as MIL, truly the Gold Standard of care. We’re flying to Philadelphia for services this weekend. One more unexpected chance to see MIL.</p>

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<p>This is really my only hope for ever getting my MIL out of her apartment. She was recently hospitalized with pneumonia after falling yet again. When the hospital sent her home, she was supposed to be getting Medicare-provided aides twice a week through Visiting Nurse Service. Well, a nurse from VNS called me after my MIL went home – to say that the agency was going to refuse to provide care because they felt she was not safe at home with the level of care that Medicare was providing. I said, I agree that she’s not safe, but she insists on being in her home, so what are we going to do? Then the private-pay agency said they’d only provide aides if someone was going to pay for seven hours of care, seven days a week. I was on the phone with these various agencies all day; it was crazy. I was sort of hoping she’d have to be returned to the hospital. But then somehow all these decisions got reversed and she now has aides three times a week for 3-4 hours each time. Two of those are through Medicare and one is private-pay. But the Medicare will come to an end soon enough. </p>

<p>The whole situation is so depressing. MIL never leaves her apartment, she only has these aides for company, she is dirty and smelly, the apartment is dirty and smelly, she claims to be in constant pain. I really don’t know what these aides do other than keep her company. And she absolutely refuses to consider moving to assisted living, even one close to her current location. All the professionals who see her seem to agree that she’s just on this side of being competent to make this decision. So so frustrating.</p>

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<p>vballmom, true, true, true! There really should be some kind of handbook, and this bit of information should be in the Top Ten Things Which Adult Children Need to Know. I can’t remember when I first heard the term “discharge manager” (known as “case manager” in our hospital), but it took me a long time, and several discharge disasters, to realize how critical they are. Since I’ve figured it out, I talk with the discharge planner every single day of the hospitalization, starting with Day 1, letting them know that my parents are not reliable reporters, and that they cannot do ANY aftercare at home. This phrasing seems to get their attention. </p>

<p>MomofJandL, the problem for you is that they probably won’t talk to you, or anyone who doesn’t have a POA or Healthcare Directive. But there’s nothing to prevent you from telling them, “I know you can’t tell me anything, but despite what MIL/FIL may tell you, I want to let you know that the home situation is unsafe.” And then drop your DH’s number. (warn him first :))</p>

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<p>Awk!!! I just received my mom’s message that she’s giving her 30 day notice at the senior residence I moved her into last February. My worst nightmare is coming true. She’s too <em>with it</em> to get conservatorship, but she’s lost her executive skills. I’m out of town for a family funeral, and management at the senior place won’t be available until I’m busy with a viewing and then the funeral, etc. :frowning: Hopefully, they won’t kick her out if she doesn’t have her ducks in place – which I can’t see her accomplishing. I certainly don’t want to facilitate this move because I know it won’t work. She’s already been taken to ER once for stitches after a fall at the residence; who will see to it after a move?</p>

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<p>Where does she think she’s going to go?</p>

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<p>Ccsiteobsessed- how frustrating and worrisome. If you have a relationship at her current residence you can check in and see what is going on from their perspective. She may not have taken any action at all yet. If she has given notice, you can see if she can put together a better alternative for herself. If not, there is no aiding and abetting unless there is a real reason to leave. If there is something of concern to her, perhaps it can be addressed. These places often have meetings about what is bothering a resident and regardless of the issue, the process can be reassuring. Maybe she wanted your attention and left a provocative message.</p>

<p>Sorry for the loss and timing of this. One step at a time. Behavior that is erratic and poorly thought out may be what ultimately allows you to help her the most. Do keep track of it over time. This is so challenging, and yet the worst may not materialize. Best to you.</p>

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<p>I am so sorry about your plight, CCOB. You may want to talk to your mom to see if there are service issues at the AL or Independent Living. Perhaps its time to locate another facility. If you cannot, you may have to find home care and that is tough.</p>

<p>To find home care, it is better if you hire the caregivers yourself, instead of using a service or agency. If your mom is English speaking, you may try local Philipino newspapers, lots of Philipino do this kind of work.</p>

<p>It is cost prohibitive for any home care agency, especially you need 24/7 service. I had priced out one I think the quote was over 400$/day. Currently we are paying about 100$</p>

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<p>Shobomom- As one of the apparently lucky few who has parents that are looking 5 years ahead, I appreciate your advice. I am researching elder care attorneys now and will be our first order of business after my parents get settled in their new place. We have POA papers signed, in my files, and in a safe deposit box at the bank, but suspect new papers need to be drawn up and updated estate planning (such papers also in the same places). </p>

<p>CC, how frustrating. Hopefully her reasons for wanting to leave will be resolved soon.</p>

<p>Makes me wonder, will all of us who are so frustrated and worried for our parents, be the same way down the road? I will have to also set up a POA now! When I think about it, it was around my age when my parent’s set up theirs.</p>

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<p>CCsite, so sorry! Travelnut gave great advice. Contact the facility and your mom to see what her objections are and can they be addressed? I would not aid her in this decision until you meet with the facility. I have been living through a nightmare with my 96 yr. old aunt who also is not quite ready to go for a competency hearing, (very close but no guarantee yet). She signed herself out of an extended care facility on the promise of 24 hour care. She promptly locked out several aides, sent others literally running out of the house and one even had what she thought was a heart attack and ended up in the ER. I was able to discuss her behavior with the neurologist prior to her visit and is on Seroquel and Lexapro. She thinks that all stroke patients receive these meds to help them think more clearly! She does not know about her dx. of vascular dementia. I have POA, pay all bills and have my name jointly on her accounts. Fortunately, she has one aide now that she likes and has been with her since April. It is always a disaster when this aide wants a weekend off, we have not been able to find someone who will agree to stay with her for the weekends. It is a revolving door of aides. If you can keep your mom in AL, do whatever it takes!</p>

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<p>So thankful to have found this thread! Just as DD settled into college & we thought we would have some time to ourselves, FIL was diagnosed with dementia. Come to find out inlaws had no retirement savings, no insurance beyond Medicare, and no intention of moving him into memory care or allowing us to get them Meals on Wheels, yard/housecleaning service, or home health care aid. MIL’s “I can take care of him all by myself” philosophy has suddenly changed to “get me out of here” and we are trying to work out placement in memory care long distance. </p>

<p>We have promised our DD that as soon as FIL is settled we will draft step by step instructions for her as to our financial situation, medical POA, advanced directives, etc so she never finds herself in this sad and stressful state of affairs. I’m just thankful we got her off to school before all this developed, and I’m grateful for the space to rant (don’t feel I can do that to my DH, and my friends are probably tired of hearing it!).</p>

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<p>CCSite and simpkin, good luck to you both and thanks for the warnings of what we may be in for. </p>

<p>My mom took care of her mom through dementia - first moved her to our home, then to an AL center. Maybe because of that experience, she has been very proactive about making sure she makes things as easy as possible on us. </p>

<p>MIL/FIL did not take care of their parents - they had moved away, and the siblings that stayed behind took on most of the load. They have done little to nothing to prepare for the situation they are in, and their kids have no memory of mom and dad taking care of grandma, so they are just not mentally and emotionally prepared to step in. Or maybe it’s some other reason. But it does seem that parents who have been through this with their parents do more to prepare their own way.</p>

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<p>Will you indulge me while I have a short pity party?</p>

<p>My brother and various members of his family come to stay with us about every six weeks, mostly for the purpose of visiting my parents who live in AL nearby (although I like to think it’s also partly to see us). This weekend, Bro and his oldest son – a rising sophomore at Georgetown – are here. </p>

<p>Tonight we had dinner with my parents, and then looked at about 200 pictures which Bro had brought, mostly of his family but also a few of my family including my D. D has been at her obscure LAC for 4 years (one more semester to go). I have always had the feeling that her college choice was a distinct disappointment to my father, in fact a downright failure in his eyes.</p>

<p>During dinner and while sitting around the table after, my dad must have used the word “Georgetown” 10 times, completely unprompted (Bro and Nephew aren’t ones to brag about it, and never brought up the subject themselves). While looking at the pictures, every pic of Nephew at school brought some comment from Dad like, “Right, he goes to Georgetown.”</p>

<p>Dad regularly asks me, “Where is L?” When I tell him she’s at college, he always asks, “Where does she go to college?” Until tonight, I’d assumed that this was because of his failing memory. Now I know that it’s because her school isn’t worth remembering.</p>

<p>But it got worse. When we were looking at the pics, he’d say, “There’s Nephew at Georgetown.” But almost every picture of D prompted the question, “Who’s that?” It seems that SHE is not worth remembering. :(</p>

<p>I have a great relationship with my brother, and I very much like and enjoy my nephew. I wouldn’t dream of saying anything about this to them, and my father’s educational snobbery isn’t their fault after all. But I had to tell someone, because it hurts, and who better than my fellow sandwich-generation sufferers?</p>