Sandwich Generation

Parent Cafe
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<p>My dad died on April 1 after several years of serious problems–prostate cancer, quintuple heart bypass, bone cancer, uncontrolled diabetes, two broken hips, pneumonia, etc. He lived in California, so my sister handled the brunt of his care, which involved a three hour drive each way every time he needed something. He would not move. </p>

<p>I think the bone cancer is what finally killed him but he survived years longer than doctors anticipated. He was 85, refused to go into assisted living or nursing, would always check himself out of hospitals early against doctor’s orders, and routinely fired his home caregivers demanding we find someone who knew how to cook better or whatever. He was blacklisted by two area agencies. On my last visit before he died, I ended up with a torn retina (CSR), which the doctor thought was caused by stress. </p>

<p>He died at home with hospice and my sister by his side. But it was not an easy death. He had fought the hospice decision, which my sister ordered against his will because he was getting ready to walk out of the hospital against orders again and she desperately needed the support. My dad tried to get the hospice order reversed, but his doctor ultimately sided with my sister. He had hospice for less than a week before he died so it was only brought in at the very end to allow him to die at home, which was important to him. We had a lot of family discussions about having him committed, but ultimately we tried to abide by his wishes as best we could. His mind remained sharp, but sadly his tongue was even sharper.</p>

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<p>There are a wonderful series of discussions on the New York Times website dealing with the stresses of aging and aging parents. The witer Jane Gross starts each day since July 1 with a fairly short piece drawn from her experience providing eldger care for the past few years.</p>

<p>[Caring</a> for Elderly Parents ? The New Old Age blog ? NYTimes.com](<a href=“http://newoldage.blogs.nytimes.com/]Caring”>http://newoldage.blogs.nytimes.com/)</p>

<p>Oh my gosh, regardless of the trigger - the car key isse, when to moving into assited care, living with memory loss - there has been a FLOOD of responses from around the country. Young, sanwich and older people write in with extensive stories. The stories are touching and telling. Please tell anyone interested in this or feeling alone in his or her struggle in this area to look at these. Access is free.</p>

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<p>

Way to go, somemom! At least you haven’t lost your sense of humor. :)</p>

<p>Been there, done that with both parents and an in-law. Going through it now again with the other in-law. Some days, the financial, emotional, medical, and legal issues can be overwhelming. Siblings can be a big help; sometimes not.</p>

<p>

Experience has taught me to agree with this viewpoint wholeheartedly. I’d even go a step further. When parents are no longer able to carry out independently their activities of daily living (and I’d add things like driving safely, opening mail regularly, keeping up with all necessary paperwork like insurance renewals and medical claims forms, taking medication as prescribed, etc.), they are no longer capable of living independently. Unfortunately, by the time they reach that point, oftentimes they’re already not making good decisions. If they haven’t thought long and hard about these decisions beforehand and made a viable plan and shared it with their children, it falls on the children to make the decisions. You do the best you can for them, with love, and still there’s guilt. </p>

<p>I was luckier than some. My parents’ affairs were in order and relatively easy to take over. They were very cooperative. I have siblings, and we were all supportive of each other and the parents. Though none of us lived nearby, we all had relatively flexible schedules and could cover what was needed. Eventually we moved both parents closer to two of us and were able to find facilities that gave excellent care. Still it was very hard for all of us. My H’s not so lucky, and it’s been a very difficult transition. Fortunately, our kids are both grown and on their own now, which wasn’t the case with my parents.</p>

<p>I decided to post on this thread only to say this to those of you going through it: Do the best you can, as best you are able without sacrificing your own family, and don’t beat yourself up too much. I know that sounds easy enough to say, but you will get a second chance: You have children of your own. As you plan for retirement, keep your affairs as simple and straightforward as possible; and make sure your kids know where everything is and what you want. Keep your legal documents up-to-date (wills, trust documents, durable powers of attorney, living wills, healthcare surrogacies, etc.), review them every few years, and give your kids copies. Downsize when it’s appropriate (do you really want your kids to have to sell your house and dismantle a lifetime’s worth of possessions when they’re grieving, and possibly still working and supporting their own families?), and pick out a place you like with a higher level of care available for when you need it. Move closer to your kids if that’s an option. </p>

<p>For those of you whose parents are not yet infirm, it might not hurt to try to open a discussion with them about some of these issues if you haven’t already.</p>

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<p>We are in the same boat. We have 2 college age kids , rising freshman and rising senior. My Mom died almost 5 yrs. ago. A widow for 30 years, she was used to living alone and taking care of herself. The last two years of her life her health got much worse, a botched knee replacement, pulmonary hypertension requiring oxygen 24/7, diabetes, multiple falls. I was 5 hrs. away working, kids were younger, H had demanding job so I didnt always feel like I could just drop it all on him and take off to see Mom at a moments notice. My S was 10 hrs away. My bro . was 1 hour away and so was always the one called in emergencies which his wife deeply resented. My aunt who lived on the same block as mom was the sole reason Mom was able to live at home until the last days of her life. I will always be grateful for that but will always feel like I should have done more. </p>

<p>Now FIL is on the downward spiral. The in-laws used to be just 3 hours but decided to retire to a coastal town 7 hrs. away. Two years later FIL had a stroke. Things have progressively gotten worse. Now he has diabetes, macular degeneration, high BP, fluid around his heart and worst of all basically no use of his legs. Oh yeah, he had MRSA this past spring too. Mentally he is fine but is very bitter over the situation and is hard to be around. </p>

<p>He has been in a nursing home for the past 4 months. It is 30 miles from their home and MIL is driving back and forth every day spending lots of time and gas making the trip. She is wearing out fast but constanly talks of bringing him home which H and I cannnot see happening. MIL loves her beach area home (their only asset) and refuses to contemplate selling out and moving closer to one of her 4 children. Two of the four live within 2 hours but they have been pretty useless as far as helping out. They go over now and then, drop in for a visit and then go back home and leave the misery behind. We are the farthest away and yet MIL depends on DH for help in everything because the others will not step up to the plate and be pro-active. It drives me insane that he will drive 800 miles in a weekend to do stuff that two of his siblings could drive one hour and handle if they just would.</p>

<p>Ironically the D who lives closest who was always the favorite, the golden child, the one who got more than the other 3 combined,is now the one who is the least help, the least sympathetic and the least concerned. </p>

<p>I fear this is going to drag on for years and will prob. get much worse. We had been planning to retire, sell our house and build another one in an area much closer to them in a few years but with the spiraling costs of everything plus the real possibility that we may have to start helping them out financially, it may not happen.</p>

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<p>Packmom, I have been through this with my inlaws. If your MIL does not visit him so much, and perhaps wish for his homecoming she will feel widowed even though her DH is still very much alive. My FIL went through this scenario with my MIL for 7 years. He did take her out of a nursing home for a few months after her first long illness. She then had a stroke, and needed to live in a nursing home full time. While he was physically able, he would take her out to have her hair done in a salon every week, take her out to eat, and take her home for a few hours. This meant lifting her in and out of the wheelchair, and learning to inject medication. He got too old for this in his late 70s. He still kept up visits with her in the nursing home. Initially, he went to the home daily, but after years of this he could no longer keep it up. He was still working part time as well. He visited her every other day in his late 70s and he made sure to eat dinner or lunch with her (this also meant that he was provided a nutritious that he did not need to prepare, and there was no extra charge for it). His choice was either this lifestyle, or he felt that he no longer had his wife in his life. He did get cancer, and has since passed away. She is still alive in a nursing home, and it has been 8 years since went into a nursing home.</p>

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<p>Add me to the roll call. Two MILs in their 80’s and both H and I are the primaries for them. With a rising senior and frosh in college this fall. Part of why we had to rethink a lot of the college stuff. Both MILs need major help in terms of time, money, and yet are determined to live independently in hometowns a distance away. Not grateful for the help, they feel they deserve more. We are very fortunate that so far, neither have had life threatening conditions, just a lot of nuisance type health complaints that just come with the wear and tear. But still a stress on us. Sometimes, I think they will outlive us as we are hemmed in on both sides.</p>

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<p>cpt, thanks for that post. Now I know that we are not alone, and I understand a bit of your situation. Been there, done that, for years.</p>

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<p>Been there for awhile. Mom developed dementia-related paranoia due to a series of small strokes 13 years ago; my kids were only 8 and 5 at the time & I’m an only child, so I was certainly “sandwiched”. In fact, I often described myself as a “squished, soggy, peanut butter and jelly sandwich”. Mom also lived 2 1/2 hours away. After hospitalizing her near me, getting her stabilized, and moving her to an assisted living facility a half hour away (they weren’t so numerous 13 years ago), I was eventually able to cope (altho it took awhile before I stopped jumping everytime the phone rang). A year ago, just as we were to start the college search with S2, she had another stroke that affected her ability to swallow. Over the course of 1 month she was hospitalized 3 different times. At that point I made the difficult decision to move her to a nursing home 10 minutes away. Altho she would’ve preferred remaining in assisted living, I needed to consider what would work best for me (she can be very demanding, so I figured she would dislike every aide I hired for her & expecting me to visit more frequently than I could). She’s adjusted to the nursing home & has stayed out of the hospital. The most incredible thing is that the woman who never had anything good to say about me now sings my praises to everyone, including to me.<br>
S1 says he’ll repay us for paying for his schooling by taking care of us when we get old.</p>

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<p>[FSA</a> Services](<a href=“http://www.fsainfo.org/services.php?org_id=37&PHPSESSID=247b1b57ff8987443aa88cab005eb73b]FSA”>http://www.fsainfo.org/services.php?org_id=37&PHPSESSID=247b1b57ff8987443aa88cab005eb73b)</p>

<p>This (Foulkeways) has long been the gold standard in the area that includes Valley Forge.</p>

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<p>Thank you, JHS. These posts are amazing. I can identify with all of them in one degree or another. I can feel the pain. Since my own experiences, I now see all the children pushing their parents in wheel chairs, helping them into cars, sitting at doctor offices. Before, I never paid any attention. I was unaware, busy with babies, small children, birthday parties and the such. It’s humbling…</p>

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<p>I realised that I left many health issues off my list, as I read ya’lls, I don’t even like to think about adding all those mentally!.</p>

<p>I am particularly intrigued by the people who say the oldsters need to be moved nearer the caretaker kids- the action “be moved.” Just how do you do that? FIL is 90; still able to do all the normal activities of daily living; banking; not getting scammed, too much; still drives, too fast; still has full, sharp mental acuity, crosswords, opinions galore, bossy, has always seen himself the patriarch of the clan, the big boss and that ain’t goin’ down quietly. I asked DH if he could imagine a scenario where DH would be able to make decisions for FIL- nope, cannot imagine it being done or being allowed. FIL is an extremely strong personality and has scared off a few caretakers in his time, though has not actually been blacklisted :D</p>

<p>FIL has done some boneheaded things, one caretaker got him to cosign for a car loan, then made late payments, his CC reduced his credit limit to $1000 from five figures, after being with that bank since the 1940s; then he started getting calls from the lienholder and he paid off the loan after they told him he could claim the car, which legally he cannot-liars; he says he would have paid it off anyway to get them to stop calling. One caretaker charged him her couple of hours a day hourly rate x 24 when he needed some overnight care- the going rate is 10x hourly rate, so that was a rip-off. He has paid for expensive dental work for a couple of local charity cases- which is a wonderful thing, yet somewhat different for him. He has always been charitable in a sense, but never quite so giving of his funds, used to be more his time. He has always been pretty intense about money, afraid of being “screwed” and demanding the best deal from every one for everything</p>

<p>I think their story will unfold more like that of TheAnalyst :frowning: FIL has also been primary caregiver for MIL for over 20 years since her stroke- beauty shop visits, clothes shopping, travel, bathing, help in & out of the car and bed and now the wheelchair and has been amazing, most people his age are dead and he has only even had help a few hours a day for a few years since MIL had surgery and needed the transitional help. It went so well in terms of the social aspect that they have kept people on a few hours a week just to give him a break. MIL & FIL bicker and argue a lot, they both like to be right about everything and when there is no buffer it gets cranky.</p>

<p>The worst is when you get there, FIL is not appreciative of what is done, everything needs to be done his way, not appreciative of the sacrifice of time & money to take time off and travel, ARGH. It’s not just old age and set in his ways, he has always had to be the boss, always had to be right, so it is just more so, flavored with the fear of losing control with age. Poor FIL also gets jealous if MIL gets too attached to any caretakers, me, or any one else. </p>

<p>Poor DH feels guilty about being so far away, yet I am sure that leaving the area many years ago is the reason we are still married :wink: It is the proverbial rock and a hard place; DH does not feel his efforts are appreciated, yet does not feel he does enough.</p>

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<p>My Father and Mother were pretty much o.k. until they both went into the hospital at the same time at ages of 94 and 95! That was the moment that I became the parent. That was the moment that my opinion was explored. When I said you have to move, they moved. It was sad for me. My father was the caretaker, tax maker, even almost blind…he had a license, but I must say, he didn’t give up the car but he gave up the keys. He stopped driving. Besides having Macular Degeneration, his BP was like 100/60. He was stocky and fit. I think he just got tired caring for my mom. He died of cancer very quickly, within two weeks. He was ready to go. My mom died a year later and was totally dependent on caregivers at the end. So that is my story of how they were moved. You don’t want the story of how my son brought my Mom half-way around the world to live with me at age 97! That is a different sort of story with doctors’ blessings.</p>

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<p>When the old guys are far away, far enough that you should take more than a weekend, far enough that flights are involved, all day travel, not insignificant expense- how do ya’ll decide how many visits are enough? My DH & I go through this all the time, he feels guilty, he efforts to go, they are ungrateful, he wonders why he bothered.</p>

<p>What is reasonable?</p>

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<p>

Has he married, without telling anyone in the family and without a prenup, someone decades younger whom he knew for 20 days, who immediately took him from the courthouse to his bank? No, I don’t suppose so, as you mentioned a MIL in the picture. Not that I know anybody such as I described. No, not me.</p>

<p>The answer to your question about moving such a person is: with great delicacy and diplomacy, using every wile and kindness at your disposal, and exhibiting immense patience and forebearance. (IOW, it probably won’t happen until they fall and break a hip.) As far as reasonable visitation, I would say as often as you comfortably can without feeling as if it’s taking away from your family. You can always offer the parents the option of helping them move closer to you, even if you know they won’t take it. Try to remember that their situation is a decision they have made. Try also to remember that the “orneriness” is a function of the aging process as well.</p>

<p>You do bring up a very important issue with the elderly. They can be at serious risk financially from con artists, scammers, fiancees, whatever, as they lose their cognitive abilities. Even arranging for outside help who come into the home can be risky.</p>

<p>(p.s. Are your FIL and my FIL long-lost twins? They’re even the same age…)</p>

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<p>It’s such a comfort to know of others who are dealing with aging parents/relatives and are finding ways to cope.</p>

<p>My MIL passed away three years ago. She lived independently until the last 6 months of her life, at which time a debilitating illness left her unable to care for herself. She refused to enter a nursing home or to have hired caregivers, so her three kids took care of her. It was a 5 hour flight for my husband and me, but we flew down at least once a month to help his siblings care for her. </p>

<p>It was a very stressful time, but our family learned a great deal from the experience. First, the elderly don’t always know what’s best for them. Part-time hired caregivers could have eased the huge burden that was placed on our family, but we deferred to my MIL’s wishes and took care of her ourselves. The relationship between my husband and his siblings was strained for months before and after their mother died because of the stress of taking care of her.</p>

<p>When our uncle became ill six months later and was unable to care for himself, he also initially refused to have hired caregivers. Because of what we’d learned caring for my MIL, however, my husband and I overruled him and hired a home health aide. It was a great move. Our uncle really enjoys his health aide’s company, and it has greatly eased our anxiety over his well-being.</p>

<p>Another thing: have your relatives get rid of stuff before they become incapacitated! My MIL was a hoarder. I don’t think she’s ever thrown anything away. She had boxes and boxes of old newspapers, Christmas cards, rubber bands, plastic bread bags, every ribbon from every gift she’s ever received, 40-year-old cleaning supplies, and food from the Stone Age. She was also addicted to QVC, from which she’d purchased everything that’s ever been on the show–and we found most of the boxes unopened. My husband and I have made 6 trips to help his siblings clean out her place, but I don’t think we’ve even made a dent yet. It’s been a huge burden.</p>

<p>Mudder’s_Mudder offers great advice, and I’d like to reiterate the importance of having a durable Power of Attorney in place before it’s needed. When our uncle suddenly became ill a couple of years ago, he was in no shape to make any decisions (medical, financial, etc.) Fortunately, he’d given my husband and me POA a couple of years before, so we were able to make necessary decisions, pay bills, etc., for him from the outset. Things would have been much more difficult without POAs in place.</p>

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<p>^^^I forgot to mention this: We found out our uncle was driving after having been declared legally blind 6 months before! I shudder to think about what might have happened before we took his keys away and donated his car to charity.</p>

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<p>Good point on clearing “stuff” out- every visit for the last few years we clean out cupboards and basements and other of grannies crannies…she wants to keep everything, he wants to dump it all. He has given away several either actually valuable items (silver) or sentimental items, without asking any one as it bothers him to have all this stuff- like every one, he wants to get rid of her stuff as it is junk, but his junk is worth keeping.</p>

<p>We try to remind them to keep the house not empty of knick knacks and work first on the unseen areas. There are some items DH & grandkids would enjoy having for sentiment, but FIL may give it to the pool boy or the gardener or the housecleaner before we get the chance!</p>

<p>Mapesy, was your uncle driving in SoCal? I think he was behind me!</p>

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<p>re: moving them…</p>

<p>unfortunately, it’s sometimes necessary to wait until the next hospitalization, and then you ask the doctor for an evaluation for placement. the social worker and nurses in the hospital that i met were all supportive of our decision to move our mom to assisted living. the social worker explained in a kind way that arranging for home health for our mom over the last few years was good for a time but that now it was time to move forward to assisted living or nursing home care.
as siblings, we had to make a united stand and state over and over again to our mom that she would not be returning to her own apartment. she argued up until literally days before the actual move to assisted living but we continued to stand strong. in our mom’s case, she no longer had the cognitive ability to make a good decision to push her button for help on her necklace if she fell …so for us, it was a good decision to not let her return to her home. she could no longer live safely in her own apartment. </p>

<p>with my father, who died at age 80, it was the doctor who made the decision. doc called me and told me that he would not discharge my father to my mother’s care anymore because she just couldn’t responsibly care for him (they were living over 2 hours away from me). thankfully, the doc also let me know that our father only had months to live and that nursing home care was what he needed at this time. the nursing home was a few blocks from their home and my mother would visit him several times daily. it seemed to work out well as she could spend time with him but not have the responsibility of his care. </p>

<p>i am thankful for the home health arrangements we had in recent years. they did allow her to stay in her apartment. i have been helping for years with shopping, doctors appts., etc.<br>
having been through all this to this point, i do think now it would have been less stressful to have moved her to assisted living 2 or more years ago rather than have home health but at the time we felt like we needed to keep her in her apartment as long as possible (her wishes) and our concern that she would go downhill if she were to move and leave her friends. as it turned, she went downhill anyway even staying in her apartment…so there you go…
you find out that they just don’t eat properly when they live by themselves and they also do not drink enough fluids…leading to dehydration. </p>

<p>there were some memorable experiences…like me getting phone calls from the home health agency that our mom had called and canceled the bath aide visit on short notice or when we found we could not schedule the bath aide and the housekeeper on the same days. the housekeeper wanted to dictate the duties that the bath aide should be doing.</p>

<p>mapsey - our mother was a hoarder to some degree also. we are still emptying the apartment and it will take some time at the end of the month to go through the many items. </p>

<p>one thing i like to think we did right in recent years was to be sure that we had the durable power of attorney signed as well as the living will and the power of attorney (medical decisions).</p>

<p>one more thing to add…now that i’ve been through all this…i think there is tremendous benefit to the elderly receiving their medications from certified medication aids rather than trusting them to take their meds on their own. it’s also extremely helpful to have them in a health care setting where see the doctor on a more frequent basis because they can go downhill so very quickly.</p>

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<p>someone, No, it wasn’t my uncle driving behind you, but I’m happy to report that Boston residents are now safer!</p>

<p>Sorry to hear about your FIL giving away valuable family items. My MIL wrapped EVERYTHING–including junk like old rotten thread spools and broken rubber bands–in tissue paper. Unfortunately, she also wrapped valuable and/or sentimental items in tissue paper and placed them in the same boxes/drawers as the junk. That means we have to go through everything with a fine-tooth comb. I don’t even want to think about it.</p>

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<p>I had been lucky in this regard so far. My in-laws were healthy and have their faculties till the very end. There was no extended long period of deterioration for them. We didn’t even get a chance to say goodbye to MIL as she passed on suddenly. :frowning: My parents are, thankfully still healthy, I swear mom has a blood profile better than mine. </p>

<p>I have a question for people who went through a difficult experience : Would it had been easier if you or your elders make the sacrifice/choice to live closer to each other ? We made sacrifices to be close to my in-laws but currently we live thousands of miles from my parents. My husband was an only son, but I have 3 other siblings who live in the same city as my parents. I am thinking of moving to the same city, but I want to consider my kids -jobs prospects are more limited in that city and I have my own old age to consider, albeit many years down the road.</p>