fireflyscout

One day into my 2-week college road trip with my son, my mother fell and couldn't get up (paramedics were called). No injuries, but then she started having severe dizzy spells which ultimately required hospitalization. Fortunately my brother and my daughter were able to take care of things. It's now become something of a joke - whenever I'm least available to help her, something happens and I'm forced to do some quick juggling.

lunitari

How ironic...I came here to start a discussion on this topic, and here it is. Thank you all for sharing your stories! It's heartening to know there are others here who understand how this feels.

I have two kids nearing college age, a rising senior and junior. I also have a dad with terminal brain cancer. After two surgeries for tumor removal, a third surgery to put in a shunt, radiation and chemo...he's had enough intervention and says, No More. The doctors estimated he'd have about 9 months to live (a couple of months ago), but he is feeling stronger and we are hoping for more time than that. Some days I dare to hope he'll see my eldest graduate from high school; other days I know I'm kidding myself.

I start my day with two web sites: College Confidential and Cancer Compass. That tells the story right there, doesn't it?

The sadness about my dad leaks into every part of my life. He's not an old man; he's only 68 and until this happened he was one of the healthiest people I knew. Now "okay" is as good as his days get, and it's going to be a whole lot worse before it's over. It's heartbreaking.

He's several hours' drive away and I work full-time, but I visit as often as I can, every other weekend for now...probably every weekend when things start really going downhill. I'm saving my vacation days for that inevitable day. A year ago I was saving them for a European vacation with my husband and daughters. Life can change so fast.

Thanks for the place to let this out.

overseas

Yes, this is something that hits a whole lot of us! I do have a friend who is travelling back to the states to look into solutions for her mid-80 parents who live near Valley Forge, Pa. Any suggestions of assisted living, in care options in that area? Thanks.

mapesy

overseas, My husband and I are the primary caregivers for an elderly uncle who lives several hundred miles away. Since we're unfamiliar with his area, we hired a nurse care manager through a geriatric care service that was recommended by his PCP. The geriatric service provided us with a list of future care options--ranging from assisted living through nursing home care--that match up with our uncle's needs and personality. It's relieved us of a huge amount of stress. Perhaps your friend can ask her parents' physician to recommend a similar service in the Valley Forge area.

Here's the service we use in Boston:

Elderly and Geriatric Care Management Services and Caregiver Support- MGH PrimeCare

overseas

Thanks Mapesy. I have passed the information along.....

TheAnalyst

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.

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.

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.

Delicate Arch

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.

Caring for Elderly Parents ? The New Old Age blog ? NYTimes.com

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.

Mudder's_Mudder

Way to go, somemom! At least you haven't lost your sense of humor.

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.

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.

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.

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.

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.

PackMom

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.


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.

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.

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.

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.

northeastmom

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.

cptofthehouse

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.

northeastmom

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.

shellfell

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.
S1 says he'll repay us for paying for his schooling by taking care of us when we get old.

JHS

FSA Services

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

overseas

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...