Taking care of declining older relatives (and small update on me)

I can see the light at the end of my horrific commute tunnel. There are three factors that have combined to set me free: 1) When my younger son turned 5, we switched custody so the kids are at my place 3 nights a week, their dad's three nights a week, and we swing the other night. So far everyone's been loving it. 2) My kids' dad will be off work for the summer at the end of next week, so he'll have the kids during the day in the summer. 3) Next year both kids will be at the same school.

So next year during the school year, I'll have three days of dropping off both kids at one place and then going to work myself (65 minutes down from 100 minutes), and two days of taking myself to work because my kids' dad will be in charge of getting them to school.

But enough about me and my sudden liberation.

Can we talk about straddling dealing with kids and aging parents, or just supporting parents dealing with *their* aging parents?

I'm in the second situation, watching my mom simultaneously trying to help care for her mother from a distance and caring for her mother-in-law in the same city. It's a hundred layers of guilt, between what she feels and what I feel.

I can't imagine how it would feel if it was my mother who was sick or declining and I had to make decisions that were directly affecting her quality of life.

Can we talk about coping methods and ways to make things better for everyone involved?

The only thing I can think of to really help my mom is to be a willing listener when she needs to vent, and to show up physically whenever I can to take some of the pressure off.

I wish there was more I could do, and I know lots of you are in the same situation.

Any ideas to help make this easier on everyone?

Comments

[Claudia]

Ideas? No.
I am looking at the scenario of helping to care for DH's parents not too far in the future.
They're both not very old and very healthy (67 and 71, and active), except the dad (71) seems to have lyphomic cancer. Where, they don't know, nor are trying to find out.

My DH is stressed about it, understandably.
We may move closer to them (right now we're just over an hour away), so we can help out/just be there. There are other reasons to move as well, primarily to get better employment opportunities.

[CrazyMama]

Yeah for Moxie! It must feel so good to finally bet some relief from shuffling kids all over everyday.

As for how to care for mulitple generations at once, we are looking into buying a house with inlaw quarters or land to build a commune. We don't need this type of house now, but in the future I'd like to have all the people I'm managing care for under one roof. Maybe not possible for all or maybe even us, but I can dream of the perfect situation can't I?

[Julie]

Is there stuff you can do to make your mom's life easier? Hire her a housecleaner, pay for respite care, find her a support group, things like that? It doesn't change her situation, but if it can reduce some of the stress and burden, that might help.

[Lynn]

Unfortunately, I know about dealing with young kids and declining parents at the same time. My Mom passed away suddenly from a stroke when my daughter was three and I was half way through a complicated pregnancy with my son. That left me to care for my Dad who was steadily declining from heart disease.

For me, a huge help was a support group for caregivers that was run by the hospital where my Dad was treated. The hospital's social worker was helpful as well and she put me in touch with resources that I never would have found on my own. I also joined a group for daughters who have lost mothers that was run through a local hospice organization. I learned so much from the other women in that group and from the social workers and volunteers. It helped to be around others who understand because my friends were well-intentioned but had no clue about how isolating grief can be- both the grief over the loss of my Mom and the slower process of loosing my Dad.

I also learned to ask for help, which was something I had never, ever done before. It helped that my OB knew about the stress that I was under and basically told my husband that he needed to round up his friends and family to help or she was going to put me on bed rest. My husband's aunts and his mom wanted to help but are just not the hands-on types so they pitched in to help with the cost of a part-time babysitter and cleaning lady.

[JCF]

I live about an hour from my grandmother, who is extremely sound of mine, but less and less so of body as time goes on. My mom lives out of state, but luckily an aunt currently lives with my grandmother. We all sense that the current situation will not last too much longer, but there is no plan in place currently.

I feel like I should be visiting much more regularly to help, especially while my my aunt is working, but being 34 weeks pregnant and with my 17mo and 2.5yo in tow, caring for them in my grandmother's large, non-childproofed house is more than a full time job. I don't know how those of you with young kids and aging parents manage to do it--I'm impressed!

[TodayWendy]

I'm in the same situation you're describing Moxie. My mom & aunts are doing a fabulous job of taking care of both of my grandmothers. I'm trying to be there when I can and be someone to talk to when I can't. The one thing I really want to be doing and am currently failing at is writing weekly letters with photos of the little one. I know that it is the one thing I could easily be doing that would make them happier, and having them happier makes everyone else's lives easier. I keep intending to do it...and then not doing it.

[carmen]

No ideas here either! My parent's issues are health-related in the case of my mother (she's only 50 and in very bad health). There's also a financial issue due to my father's business (construction) tanking in the wake of the recent financial crisis and my mother's health gouging out any financial cushion they might have had (if any). They've never had much money since my dad has always run his own small construction company, but they had been doing much better in recent years. Now they've had to borrow (kind of a lot of)money from us and we just work in education so its not like we're rolling in it or anything. Plus we're trying to save money and enjoy our lives with 2 kids to support.

Feeling very torn and guilty all the time. Knowing we need to help them yet feeling as well that its time for us to take care of and save for our children. I also know my parents feel awful for having to depend on us but things aren't really looking up yet so who knows if they'll need more $$ soon.

Sucks.

[carmen]

Can I also add to my above post that I love my parents so much and I know they hate needing our help. I'm sure the guilt is just eating them up but we're family so we understand. My father has worked hard his whole life and my mother has had health issues her whole life and neither of them have health insurance due to the cost and "pre-existing condition" issues anyway. I rarely had health insurance as a child so it just seems normal now that they don't have it.

Anyway... kind of blathering on now :)

[CaliBoo]

Yay Moxie! I liked hearing your update, because we knew you were in an impossible situation, and you demonstrated that sometimes it just takes time and determination to find a solution. No magic wands in Parentland, right?
I am doing my best to help my dad deal with the decline of his father... the best thing I can do is remind him to take care of himself. I can't solve the problems, can't get my grandfather to stop being a jackass, or stop time. But I can be the voice that tells my dad to take a break from the craziness, recharge himself, get enough sleep. It's no good when the caregivers burn out.

[Stephanie]

My dad's mom has MS and my grandfather, who has always been her caregiver, recently started dealing with some mental/physical issues. They are in their 80s. I think depression and exhaustion are at the root of my grandfather's problems, but they have changed his personality and this has taken a real toll on both my parents since last year. I guess the upside is that it has made my parents take a very hard look at their current living situation (in the mountains) and start to make plans for when they can't live there anymore.

All I've really been able to do is 1) listen to my parents when they talk and 2) I've tried to do stuff for my grandparents that I might normally not (since I live far away).

[Alison]

@CrazyMama: A commune sounds lovely - that way my aging folks can teach my kiddos how to do things I don't know how to do (grow plants, mostly. Such a black thumb...) and my kiddos can cheer my folks up as they age. What a really wonderful idea!

@TodayWendy: I really like your suggestion of a weekly letter. I think I will try to do the same thing! Thanks for the idea :)

@Moxie: Liberation is indeed exhilarating, isn't it? I love the kind that comes unexpectedly. It gives me a deep joy when I have had the day from hell and my husband comes home and says, "Go out, go do something, I'll take care of everything." Our of the blue. Liberation = Love

[Raia]

The best advice I can give is to plan for it financially. If it's too late to really help or encourage your parents to save, then make sure you are saving for yourself so it will be easier on your kids. The other piece of advice is to make sure everything is in order legally. Power of attorney, health care proxy, living will, last will and testament, estate planning, and so on. SO much better to take care of these things and keep them updated before someone is in very poor health or after a sudden death

Our son was born right after my mother was told she only had a few months to live. I hadn't really planned on quitting my job, but that's what I did in order to stay home with my mom and son. The days were very difficult and exhausting, but looking back, it seemed like it flew by. Try your best to get lots of help, of any variety, pare down what has to be done to the bare essentials...in fact, as I think about it, any advice you've been given to get through the first few months of having a newborn probably work pretty well as advice to help a loved one who is ailing. My mom lived to see my son's first birthday (far longer than what the docs had said) and I hope fervently that I did right by her. I tried my best. She adored my son and I'm sure his presence in her life gave her added time.

[Maura]

I rarely have something to offer to the AskMoxie community, since I don't have kids, but this one I can do!

I took care of my elderly dad for a year full-time before he died, so I'm not so good at addressing the "balance" issue. It was never a conscious decision for me to make a commitment for that long -- basically, at 81, he got pneumonia and went into multiple organ failure while I was taking a planned break in between jobs. I had saved to have a few months off, and his prognosis was a couple of months at best, so I figured the least I could do was bring my dad home for home hospice so he wouldn't have to go into a nursing home. This became an 18-month saga of him getting better, then worse, then better, etc...just when I thought I could go back home, he'd take a turn for the worse and I'd stay for "the end", except then he'd take a turn for the better and I'd make plans for support systems to allow me to leave, then he'd worsen again, lather, rinse, repeat. Finally, when my savings was gone, I had to go back to work full time, and my brother stepped in to split the hands-on care with me. It's a longer saga than that, but the upside was that I was able to enjoy many simple moments of affection, care, and joy with my father that would not have been possible had we not spent that time together. It was difficult, but ultimately a blessing and an honor to hold his hand and bring him comfort in this time before his death. Another upside is I have a much better knowledge of navigating the web of social services the bureaucratic nightmare that is the US health care system. Downside is the experience left me broke and deeply depressed, having neglected my own self-care for far too long.

So first and most important piece of advice would be to prioritize self-care. (Same advice for caregivers of elders as for caregivers of children.)

Secondly, investing time in research about available social services resources for aging parents is as valuable as spending time in direct care of those parents. I talked with countless social workers and followed up all sorts of helpful leads for low-cost help for seniors living at home, but even after a year of full-time eldercare, I still found new resources I hadn't known existed.

For instance, my dad's *local* municipality offered FREE weekly housecleaning services to homebound, sick senior citizens. It wasn't advertised anywhere and I only found out about it by talking with another person with aging parents in the waiting room of my dad's dialysis center. It was such a tremendous relief to have someone come over once a week and do the "heavy" housecleaning like scrubbing the toilet, and as happy as I was to have the help, I was frustrated that even after all my Googling and countless inquiries to umpteen social workers and health care providers, it took me a year before I found out that this help was available.

If you're in Moxie's position of being an indirect caregiver (you want to support a parent or spouse or friend who is caring for an elderly person) one really helpful thing you can do even if you are at a distance is help with researching local resources. I've found that many services for the elderly are not advertised on the Web, so you may need to be persistent in following up leads by phone, but a few hours a week/month of this kind of help can make a big difference in finding "hidden gems" like this housecleaning service I discovered.

Other huge helps for me that weren't obvious to me when I started:

- Visiting nurses, visiting occupational therapists, visiting physical therapists, and visiting home health aides can often do a much more comprehensive (and affordable!) job of caring for an elder who can still live at home than living in a nursing home. Having my dad in a nursing home for 3 days was much, much more stressful than keeping him at home and bringing people in to help. And even though he lived solely off Social Security, it was more affordable for him than living in a nursing home. (Of course, this doesn't count the cost of my lost income for a year. I'm taking a huge hit financially even now, but, hey, I saved taxpayers a few hundred thousand dollars.)

- Many states offer special programs to help fund Home Care for Elders (it saves megabucks for the state to keep elders at home rather than have them draw Medicaid funding for nursing home care). These programs not only include funding for comprehensive visiting nurse/therapist/health aide care, but they often have much more broad eligibility standards than Medicare, meaning elders can keep some assets.

- Some states (not mine, unfortunately) also offer monthly stipends for at-home caregivers of elders, even spouses and adult children of elders, for the same money-saving reason. It's a great resource for people like me who end up taking time from work for months at a time to do home hospice or provide longer-term direct care at home for an elder.

- The Red Cross offers far more than blood. My local Red Cross had a network of volunteers who would drive elders to doctors' appointments. When I finally had to go back to work, my amazing local Red Cross helped me by transporting my dad to and from the dialysis center three times a week. This kind of service can help you from having to take time off work for an aging parent's many doctor visits.

- Catholic Charities in my dad's hometown offered a Senior Nutrition Program that was actually cheaper than Meals on Wheels and offered very good meals, delivered once a day. The cost was on a sliding scale basis, so my dad only paid $60/month for one hot meal and one cold meal every weekday. His meals were customized for his dietary needs as a diabetic with congestive heart failure and on dialysis (low sugar, low potassium, low salt, very nutritious).

- I dressed and bathed my dad, held his hand as he walked, changed dressings on wounds that wouldn't heal, administered medicine 4 times a day, etc etc etc, but I spent at least as much time navigating medical bills, insurance paperwork, AARP supplemental policies, Medicare Part D enrollment, and countless applications for this or that type of aid than I did in actual hands-on care. If you or your spouse can't be there to help an elderly relative in person every day, but you can come over once a week to open mail, organize bills, and get on the phone and fight with insurance companies, this will be a HUGE HUGE help.

- On a related note, helping to get an aging relative's paperwork in order will pay huge dividends in the long run. Almost all social services will require at least 3 years' worth of paperwork on taxes, utilities, banking, rent, and other expenses to assess eligibility for services.

- In retrospect, one simple thing that would have saved me hours of unnecessary hassle would have been a printer that could also make copies! Oh, the paperwork I photocopied...if you're at a distance and can donate a cheap copier/printer, it could save a lot of time for a direct caregiver.

- On a related paperwork note - the volume of mail and offers that elderly people get from AARP is confusing as hell, even to me. For years, my dad thought he had a $10,000 life insurance policy from AARP to cover his funeral expenses. He also had a supplemental Medigap policy and a prescription discount through them. He got so much junk mail from AARP (often 2-3 pieces a DAY) that he sometimes neglected to open more important pieces. We found out a year too late that his life insurance policy actually expired when he outlived the term at age 80, but he never realized it because they still were taking a direct deduction from his checking for other programs he was enrolled in, so he thought he was still paying premiums. (They claim to have sent him paperwork offering to convert it to a whole life policy in the months before he turned 80, but he says he never saw it - could have gotten lost in other junk from them.) It broke his heart to have paid into a policy for so long and get nothing from it, leaving his kids to pay for his funeral.

- Should be obvious I guess, but a living will, health care directives, and medical proxy are essential. Less obvious but very helpful was getting written permission to serve as my parent's representative when speaking to all associated insurers, banks, utilities, or anyone else related to bills. Oy.

- Push through and have the hard conversation about a will and funeral plans while you can. Finances, too.

- My dad wasn't computer literate at all, but I could print out cards, pictures, scanned drawings, and all sorts of goodies from relatives at a distance. If you've got kids, a regular injection of caring artwork can really brighten the life of a distant elderly relative!

[Elaine]

Something as simple as making sure you thank your mom for caring for your grandmothers can go a long way. Encourage her to get in touch with the local Office for the Aging (or whatever it might be called where they live). They can often be a big help. And see if you can find a referral to a good elder care manager for the care taking that is long distance. Frequently these are social workers or nurses that set up a private practice and act as the eyes and ears for the family.

Also, see if there is a way to schedule family visits for family members interested in helping to give your mom a break. We found these visits to be a good reality check, both for the visiting family member as well as for the carer. When my older sister came for a week and at the end said, "What are you doing? Mom never wanted you to have to give her this level of care. It's time to find a good nursing home." we listened.

[Alexicographer]

Congratulations on the improved commute; that sounds great.

On the elder care: oy. My dad's in a nursing home (where he needs to be) on medicaid, and the one saving grace, honestly, is that he was uninvolved enough as my father that I don't feel bad not providing him more care/assistance than I do. That said, the following are clearly true: one, being able to afford care in a facility like this (or to qualify, as my dad now does, for public assistance) isn't enough; the staff are overworked, many are not native English speakers, something as simple as my dad losing his glasses (a routine event) remains unsolved until I show up. Two, you've got to pace yourself. My dad's a recalcitrant so-and-so likely to live for years; I can't wear myself out (or skip taking a vacation, or ...) this year if I want to be around and sane, next. Three, cautionary tales about paperwork and wills overstate the risks if there isn't intra-family disagreement and there aren't assets. My dad is intestate and has no health care power of attorney, but his "assets" (non-existent) can be divided up according to state law on his demise, and I've never once had a health care provider do anything (i.e. challenge me) other than ask for my help in making decisions about care that my father's been incapable of making.

A SAHP out there looking for a free-lance job could probably make a nice supplemental income just doing minimal "chores" for elderly folks who have family out of town. I could imagine being willing to pay for something as simple as seeing that my dad has a stash of peanut butter and Hershey bars, his two staples, or a once-a-week visitor willing to drop by, chat for a half hour, and report back to out-of-town family.

I've seen referrals to the LotsaHelpingHands website, but it's more work than it's worth in my case. If you had a passle of helpers, it might be useful (and it's free).

My DH and I live where we hope to reside until we can't live independently anymore, and I'm already thinking of (and have completed some) renovations that will help make our home more accessible. And the new health care reform act contains a provision (the Class Act) that will provide a type of long-term care insurance, though the workings and value remain sketchy. Search the NYT online if you're in the planning stages (as we are) and want more info.

This is tough, tough stuff.

[Melba]

@crazymama - that's what my inlaws are doing; building a new house that has a full suite downstairs (its a walk-out so the downstairs isn't really a basement) for my husband's aging grandparents. They're in their 80's and just can't get around anymore, and live too far away to help properly. So my MIL proposed the idea and they went for it, thank goodness. I think its just a fantastic idea that keeps them out of institutionalized care for as long as possible.

[Elle]

It sounds like what you are doing maybe the best thing for your mother right now. I would only add that it may help to take her out for dinner, a spa trip, shopping, anything that she may enjoy once in a while to treat her to a little peace of mind here and there. I enjoy your blog. http://cleverlychanging.com

[baby carrier]

Old age is another part of your life in which you need to be looked after just like a little baby.

[hydrogeek]

We are dealing with this to some extent already, as we are the only ones who live near my husband's grandmother. Thankfully, she is still able to live independently, but at 82 I'm not sure how much longer that can last. I have 2 grandmothers who are being cared for by my mother and my aunt, so this indirect care thing is what's coming to the forefront more and more often. Thinking ahead to the time when my parents/in-laws can't get around anymore, I am LOVING the idea of a commune. I think it would have to be pretty big though, since both of our parents are divorced!

[hydrogeek]

OH! And I meant to say YAY MOXIE! I'm so glad you've got a little relief on the commute in sight!

[JennG]

Try to get her to hook up with a caregiver support community because they will have the goods on all the specific resources and weird questions (like what to look for in a walker, etc.)

I reviewed (shameless plug) Our Turn to Parent up here (Canada) and it's a great book for Canadians, with a lot of practical stuff that would apply to US caregivers too. They have an online community going:

http://www.more.ca/relationships/family-and-friends/our-turn-to-parent/a/21584

[Wilhelmina]

I am so happy Moxie for the improvement to the gruelling commuting schedule. Great news!

No great experience on the elder care issue having lost both parents early and quite early. I was a de-facto carer for my mother in my teens and what would have helped me most I think is someone to listen to me about the good and ill without judging or advising.

And the other suggestions are great. Treat her to some special attention if you can, help with the logistics of running her own home shopping, cleaning, taking the odd shift as you can.Meals for her freezer perhaps. Bunch of flowers. Small things mean a lot when you're exhausted and all carers are.

Really it's the being there that's priceless. Your mum is a very special lady. With a very special lady daughter.

[corie]

I just watched my parents go through this with my Grandmother, who is suffering from Alzheimer's. All parent-child relationships are different- in our case, my father was extremely protective of his role in caring for his mother and was hesitant to accept help from me, instead saying that it was he and his siblings' responsibility. It took a lot of time and tender offers- and sometimes, just picking up and going there to help without asking first- to get him to accept assistance. What was the assistance? Love. Support. Spending time with my Grandmother so that my parents could go for a walk or out to dinner. Most people run on auto-pilot in crises and dealing with an ailing parent can be a prolonged one. A lot of the fear or hesitance for help is often the worry that one will fall apart if they relax. Might be true, but at least as children we are there to provide comfort.

[Tzipporah]

As bad as it is taking care of the older generation, think of the alternative.

My DH is suddenly an orphan, having lost his mother ten years ago, at age 49, and his father suddenly last month, at age 66.

We get to deal with the other side of things watching my parents move into a retirement community to continue aging, but we're so grateful to still have them.

[Alexicographer]

Back to see the other comments and with a couple things to add having read them

Per Elle and others, I do think a lunch (or whatever) with nothing to do except listen to the caregiver is a good thing. I had a friend supporting someone who was dying and set up a regular weekly lunch date at a greasy spoon at which the entire focus was how was she (the caregiver) doing. I think this was helpful, though sadly I found years later that either our friendship had never been more than, or had come to be defined as, a relationship involving me helping and listening to her but not vice-versa. But, so it goes.

And to what hydrogeek said, I think divorce is going to dramatically alter and complicate the caregiving experience of (probably) our generation and (certainly) our children. Every single one of my son's grandparents has been divorced, so my husband and I have had four different households' worth of the immediately older generation (though one has recently passed on, reducing the number to 3) potentially relying on us, and half of those extended households include adult step- or half-siblings, potentially further complicating the sense of who is "responsible" for providing assistance. Yikes.

[Daisy]

Being proactive about seeking to age in place is a huge, huge gift I think everyone should give to their children. It can't eliminate all future responsibilities (don't like the word "burden") but it goes a long way. My parents have done this. We've had frank discussions about their finances, I know they've planned ahead, and they've already downsized to a quite wonderful condo. My in-laws on the other hand -- total black box. We have no idea how to plan to help them as they age because they are so damn cagey about everything. Makes me want to tear my hair out.

The other thing this post reminded me of was watching my mother cope with her much older sister's cancer. There were four siblings total, and everyone pitched in during the several years of hospital stays. Nurses and doctors remarked how unusual it was to see such a cohesive system of family support. (It wasn't all rainbows and puppies though; not everyone always agreed on what was "best", there were lots of fights, but everybody was THERE with rolled-up sleeves.)

Final thought -- keep a sense of humor. My mom and her sister still laugh about my wonderful sly grandmother telling them to look out the window for the police car she heard while she tried to secretly pull out her catheter for the umpteenth time.

[anonymous]

@Maura, GREAT post, thanks!!!!!! Sent it to my sister who is currently LIVING WITH my elderly, frail, irritable and confused parents. She is the youngest of we eight, has two kids, two dogs a husband that works really hard, then is somewhat checked out, and is expecting twins. OY! The care and well being of my parents, and my sister and her family is a huge area of family support failure. Mistakes were made, but sibling resentment, and my mean father, are big parts of the problem. Wish they had built an addition for separate living quarters. I think we thought the house was big enough for the ten of us to be raised in, so never considered how small it would be when my sister and family moved back in. No, Not big enough. God save me from being a mean old woman.

[TheSwede]

I looked after my mother who was diagnosed with cancer when I was pregnant with my first child. It was very tough. Despite having other siblings who could help, it was only me she wanted to help, and trusted to look after her properly when she felt very vulnerable. This made it very difficult for me to have a few hours respite or to spend time with my husband to enjoy the pregnancy. I stayed with her and was "on call" around the clock right up until the baby was born. But I wouldn't have changed that for anything. She was such a proud woman, and it must have been horrible for her to suddenly have to rely on someone for basic care. It helps a bit to know I made her feel a little better when she was at her worst.
Give your mom a lot of support, encouragement and love. There is so much guilt involved, feeling torn about who needs you most and who deserves to have your time. There probably isn't any right way, just the way that makes it manageable.

[anonymous]

Oh, and I heard/saw this on "House" and put it up in red letters in my kitchen: "BETTER TO REGRET VISITING, THAN REGRET NOT VISITING." I have to force myself to visit my elderly parents in the Northeast (we are 12 hours drive away, but flying is no problem), and make calls to my mother who is very confused on the phone.

At the same time, I feel rivalry (resentment?) about the visits to my in-laws, who are enjoying their life, and are my child's favorite grandparents.

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