Tag Archives: family

caregiving and accountability

The Stress of 24/7 Accountability of Caregiving

This isn’t a rant or a complaint, just information to help people understand one of the many challenges of full time caregiving.

My aunt has lived with us for almost three years. That first summer was physically, emotionally and logistically demanding. I was constantly exhausted and stressed.

The hardest thing at the beginning was not knowing what to expect and learning how to navigate changes that I couldn’t predict.

One change was the increased traffic of well-intentioned visitors. Except for my closest family members (brothers and cousins), visitors added to the chaos those first few months. Once I identified it as a stressor, I was able to set some boundaries. Most people respect them and are very understanding but we’ll still get the occassional surprise visitor. Who does that?

If you’re reading this and know someone caring for a loved one, please don’t drop in unexpectedly, it’s rude, inappropriate and disruptive.

I’m lucky that my aunt doesn’t have demanding medical or physical needs.

The hardest thing about being a caregiver now is the constant accountability and having to make detailed arrangement for anything that takes me away from the house. I can’t run to the grocery store if someone isn’t here with her. Weddings, funerals and every family event are tricky to attend because all my back-ups are usually attending those, too.

People don’t realize that every event and activity requires planning and arranging for someone to be with her, prepare her meals, help her in the bathroom, keep her on her schedule, let alone coordinating my own family members. I can’t tell you how often I thought I told my kids about a funeral or an invitation/event and they never heard about it. Blank stare.

It’s a chore to enjoy normal family things. I tend to opt out of movies, get-togethers with friends and family, dinner out or the occassional sporting event because it’s just easier than scrambling to arrange one or more caregivers.

Any solution is temporary. It’s great when people offer to help but it’s always only temporary. My daughters were just getting comfortable taking responsibility for 24 hour care to allow me to be away overnight but my aunt’s physical and mental abilities have declined so quickly that none of us are comfortable with that.

My mom and I will try to share caregiving as long as possible. My aunt will spend a couple of months at each of our homes to give the other a break. It’s much easier than trying to manage her care in a nursing home, for now.

 

Opting Out of the Awful School Pictures

 

school-pictures

4th grade me with my Dorothy Hammill haircut

I’ve had it. I used to feel guilty that my kids didn’t have school pictures since they were homeschooled.

This year, I’m opting out.

I’ve purchased a “package” for each of the kids for each of the years that they have been in school. I never display them. I rarely share them. They sit in the cellophane window envelope in a drawer somewhere.

To be perfectly honest, none of them are any good. Not one school picture actually looks like the kid in it. Bad smile, pasty face, awkward angle. They are just bad.

The photo packages are too expensive and they’re purposely designed to NOT include the sizes you might want.

I thought Mark would be offended that I didn’t want to buy them this year but then forgot that he’s a boy and doesn’t care about stuff like that. I knew Kate wouldn’t care. The only year she let me buy photos, she wouldn’t let me see them. She wasn’t interested in doubling down on her humiliation by getting the “retake”.

 

 

 

 

 

My Theory About Why So Few People Truly Understand Caregiving

alone

photo credit: Todd Diemer | Unsplash.com

When I took on the responsibility of caring for my elderly aunt, the only thing I knew was that I really had no idea what to expect.

Although my closest family and friends worried for my well-being, they have been so supportive and really make it possible.

I have thought a lot about why the impact of caregiving on families is so underestimated and misunderstood. A 2009 report estimated that family caregivers save the U.S. health care system more than 450 BILLION dollars per year.

It should be a priority to study and support family care situations. At the very least we could try to educate people about how best to prepare to care for a loved one.

Frankly, I don’t have the energy to advocate for policies and services to support caregivers even though family caregivers save taxpayers hundreds of billions of dollars of year. I think the reason it’s not a higher priority is that you can’t relate to it if you haven’t done it.

It’s impossible to paint an accurate picture of caregiving without compromising the dignity or privacy of the person being cared for. There are some private support channels online where people feel safe to open up and discuss the ugly details. I think these are important resources for caregivers but I learned very quickly that I didn’t want to spend what little free time I had swimming in the soup of other caregivers’ situations.

I have contributed to a different kind of caregiver support site that tries to keep the focus on promoting the happiness and health of the caregiver. If you’re a caregiver, check it out. Elizabeth is positive and offers excellent strategies and practical solutions for making your well-being a priority. [Sorry for the digression. Back to my point].

When anyone other than my closest friends or family members ask how my aunt is, I have little choice but to say “fine”. I have no desire to get into the challenges of our days to outsiders and unsupportive people because I feel like I’m betraying my aunt or complaining. To describe the graphic details of her personal care or her declining cognition would compromise her dignity and I’m just not willing to do that. It’s hard and she’s sweet so that’s that.

I wish I could prepare people for the monumental task of caring for an elderly loved one. I may write about some unexpected challenges that have little to do with her personal care so as not to compromise her privacy. Maybe some day, I’ll have the energy to advocate for policy initiatives to support the millions of people who are caring for their elderly family members but not today.

 

 

 

Tennis, Family and Caregiving

 

This post will be boring to anyone but my mother but I feel like writing it so I don’t forget.

I turned 47 on Thursday. Hannah qualified for states for the 2nd year so I got to drive her to Hershey, PA for the tournament on that day. We were all together for the weekend, which was the best birthday gift ever.

Hannah’s a natural goal-setter and despite not training during the off-season (the kid got a little burned out on junior tournaments and clinics) she’s had a great high school tennis career. Let me brag here because she won’t do it herself. She is a 3x section champion and a 4x district qualifier. She qualified for states twice and was the district runner-up this year. I think her regular season record is 33-3 for her career.

Her goal this season was to win one more match at each tournament than the previous season. She did that in the district tournament by playing in the final and she exceeded that goal at the state tournament by finishing 4th!

Hannah Phillips Tennis States

 

My cousin was generous enough to stay with my aunt for two nights so my mom could come, too. Another gift. It meant a lot to Hannah that she was there.

I have incredible support from my closest family. I could never have offered to take care of my aunt in my home without it. It takes some extra planning and preparation to leave her for a couple of days-even in the best hands-but it all worked out.

Congratulations to Hannah. We’re all so proud of you!

 

Teens and Caregiving Part Three

Sandwich generation #teens #caregiving #elderly #strategies

If you’re one of the millions of Americans with parents over 65 and children still at home, chances are you’ll likely be facing a decision about whether to provide care for your parent or another aging relative.

While most children are adaptable and will pitch in wherever they can, many kids are dealing with overwhelming stress from school, friends and other demands in their world.

What can you do if your child doesn’t agree with your desire or need to take on a primary caregiving role?

In spite of the added demands on your own time, your first priority is to your family. If you have a choice and a careful consideration of the situation points to another option (assisted living, nursing home or hiring care and service providers from an agency or the community) sometimes you’ll have to go with that. I’m not suggesting that you cater to a whiny or self-oriented young person but I do think you should carefully consider whether the decision will lead to irreparable harm to your family.

A number of factors could lead to a teen’s inability to cope with another person under the roof. Feelings of grief or loss of the family member who needs care is a possibility. If the person suffers from severe dementia or extreme health conditions. If the person is scared, mean or confused. A recent death in the family or other crisis from which the child must still recover or intense situations at school could be other reasons that your child might be unable to cope. Whatever the reason, it’s not productive to judge it but you should consider any such factors when weighing your decision.

Here are some suggestions to help a child who can’t or won’t cooperate if you’ve already taken on the responsibility.

1. Adhere to familiar routines as much as possible or create new ones

Predictability is extremely comforting to most young children. Some kids continue to rely on familiar schedules and knowing what’s next depending on their personality type.

Even if the routine will change, preparing everyone ahead of time should minimize the stress.

2. Carve out chunks of time to connect with your child

You’ll both appreciate your efforts to do so and you can create memories you might not have had otherwise.

3. Talk talk and talk some more

Communication can be difficult with teens but talking about what seems like an outside topic (your relative) can help form a habit. Don’t wait for your child to complain or break down. Be proactive about bringing up any subject and make it clear that resentments are normal and you won’t be angry with him for expressing frustrations with the situation or the person your caring for.

4. Point out some benefits of the new situation

It may be that having your loved one in your home is easier than trying to manage her care in a nursing home, for example.

In my case, my aunt lived 4 hours away and in the weeks leading up to the decision to bring her to my home, I had to travel there at least five times in as many weeks with my mom to take care of issues that were popping up. Including an extended stay over Easter without the kids. That situation wasn’t sustainable and was extremely disruptive to our family life but my mom wasn’t able to manage the responsibilities and decisions on her own (she’s also in her 70s).

5. Look forward to something fun and positive with your children.

Make a bucket list of things that you might like to do when things return to normal. If you don’t want to wait that long, enlist the help of family and friends to get to it soon. Time spent just dreaming about fun things will be productive.

6. Be vocal about your appreciation when your child shows kindness, compassion and helps in any way

Even if that help isn’t directed to the person your caring for, let your child know that you noticed and that it helped you.

7. Seek counseling if necessary.

Kids process things very differently than adults and other kids. If you observe drastic changes in behavior, you might need the help of a professional to give your child an objective listener and some tools to manage the new situation.

Some of these suggestions seem obvious but they’re easy to forget or put off when you’ve added a full-time job to your already-busy schedule.

I would love to hear some other strategies for helping to minimize the impact of caregiving on children.

This is part 3 in a series about caring for teens and a sick or elderly family member simultaneously. You can read part 1 here and part 2 here.

 

Why I Care for My Elderly Aunt at Home

How to care for elderly relative

The only thing I expected from my (maybe impulsive) decision to invite my 78 year old aunt to live with my family was the unexpected.

The only thing I knew for sure was that I couldn’t proceed without substantial amounts of Grace (as in from God). I also knew that I couldn’t possibly envision what changes it would bring. It might be the scariest thing I ever did willingly. I refused to focus on that, though and trusted that each day would be o.k. That’s how I continue to approach it.

This kind of move happens when you simply don’t want to see a person suffer.

I barely consulted my husband who has been incredibly supportive and trusted that I could make it work.

My mom and I flew by the seat of our pants and put a plan together in a matter of what seemed like minutes but in reality was about two weeks. That term “plan” is used in the loosest sense possible. I should give credit here to my cousin who, in the eye of the crisis, helped my mom formulate the plan to get my aunt admitted to the hospital then hopefully to therapy to give us time to get ready in Pittsburgh.

Truth is, you can’t plan for this.

Rosaries

Familiar Rosaries on a familiar table

You can only manage as you go.

You can only try make the best decisions possible… with the facts at hand… as they relate to the primary person(s) and go from there. The information can change daily or hourly and you adjust (as best you can).

Here are some of the facts:

1. I love my aunt and she needed help.

2. She was unable to care for herself (personally or financially). When she was admitted to the hospital (after a minor fall out of bed which only resulted in a lost big toenail), she was severely dehydrated, had a urinary tract infection, bladder infection, open raw sores on her belly and a heart situation likely related to her compromised health. In short, she was a hot mess and likely wouldn’t have survived more than a few days or a week without intervention. To be honest, we knew she had declined considerably over the winter but having been independent her entire life, navigating the intervention stage was tricky. How do you convince someone who feels fine that she really isn’t? The signs were there but it was a delicate matter broaching the subject and our concerns. That minor fall was what saved her. Proof positive that what seems terrible can be a blessing in disguise.

3. I have the space in my house because we recently rearranged things here to allow my getting-bigger family to spread out a little. This recent rearrangement repurposed a living room into a bedroom on the main floor…perfect for Aunt Linda-NO STEPS!

4. I don’t work outside the home which gives me the flexibility to make things work as best I can. It’s tricky but we’ve managed so far. Sure, my life has changed drastically (and I knew it would, I just wasn’t sure HOW). I’ve tried to make the transition as easy on Mark and the kids as possible. They all have been supportive and in spite of the sacrifices, are glad that she’s here and safe.

5. I love my aunt like a 2nd, (3rd, 4th) mother (I’ve been blessed with many women who have mothered me-including my own “Mummy”).

6. She deserves to be taken care of.

7. She still knows me (It would be hard to take care of her if she were scared of me and didn’t really know me or the family).

8. She’s not mean. (I don’t know that I could bring a mean person into the house, even if the meanness was due to dementia).

9. She still knows and loves my children (in particular, she is smitten with my youngest, who’s only too happy to have the extra audience-God Help Us!-Sorry future wife). In spite of her short-term memory loss, she is very engaged and engaging (much improved since she’s been here) and is very interested in the kids’ comings and goings and enjoys their company.

10. My mom lives three houses away. (A big factor in my thought process), so does my cousin, the nurse.

11. My 4 brothers and 2 other cousins (who also love her like a mother) live in the same town or close by.

12. My mom couldn’t manage her sister’s care from 4 hours away. Believe me, she tried and it was exhausting-we made three or four trips in as many weeks and my mom ended up just staying for the duration of my aunt’s nursing home stay.

13. A nursing home wasn’t a good option when my home was available. My aunt was in one of the better ones and it was short-staffed. In 3 short weeks she became nighttime incontinent. Luckily I was able to convince her to wake me through the night to regain it but it was just one effect of understaffing. You always have the risk that a few employees can be rude or indifferent-even one of my aunt’s friends who volunteers there admitted that there were a few bad eggs. That’s intolerable in any situation but especially with a person as vulnerable as my aunt was.

14. This aunt should be canonized. (I tease her every time I cut her toenails or fingernails that I’m collecting relics- she laughs every time I say it-except when I draw blood then she tells me I’m making relics. Jokes never get old to a person with short- term memory loss).

So, those are the facts which led to the quick turn of events that resulted in moving my aunt into our home.

I didn’t anticipate how much I would worry about her minor health issues. When a kid gets a cold, the coughing might keep you awake at night, not necessarily the worry that it might lead to pneumonia.

I didn’t anticipate the resistance by some to a plan to place a never-married, 78 year old woman with no children of her own in a loving home surrounded by family that she still knows rather than a nursing home 4 hours away from that family.

The one person who I expected the most resistance from, a lifelong friend whose life would change the most drastically by the move and who is dealing with her own crisis was and continues to be so selfless and supportive, I am still humbled by it.

I find myself balancing options and outcomes often. A good life lesson.

I try to remember what I did expect when this plan began to formulate:

I thought there was a good possibility that my aunt would be bed-ridden or wheelchair-bound (thankfully she’s not).

I didn’t know whether removing her from her home would add to her confusion. We tried to minimize that by decorating her room with things from her own home. Even a few furniture pieces fit.

Since my aunt spent her days for the previous two to three years sitting at her table watching TV, reading spiritual books or praying for people, I thought she would be doing that here.

As it turns out, Aunt Linda spends very little time in her room, which I think is great but also adds an element of responsibility to keep her occupied and engaged.

Since my aunt spent no time outside, I didn’t expect that she would enjoy sitting on my back porch so much. Thankfully, the summer has been relatively temperate (even cool) and it’s her favorite place to be. She can see my mom’s place from there and she loves to see her white head bobbing down the walk toward our porch.

One challenge has been her need for companionship. I just didn’t expect it since she’s lived by herself her entire adult life. When someone isn’t visiting, I feel responsible to keep her company most days. The kids are also around and will visit with her. I know it isn’t absolutely necessary and she understands that I have things to do but I think it brings her a measure of security so I accept it and am grateful that I don’t have many obligations that take me away from the house for long periods of time. Also, when I think of the alternative (worrying and trying to visit her in a nursing home here or 4 hours away), I’d much rather have her here.

Overall, I’m happy to report that she is much more alert and lucid than she’s been for a couple of years. A few people have commented that they feel like she’s back to her old self (before any signs of dementia were apparent) and I agree. She’s witty, alert, engaged, thoughtful and I’m getting into the habit again of asking for her advice. When I run something by her, the answers have been thoughtful and spot-on.

The rythym of our days has added enough variety to hers that there’s something worth remembering. The relatively constant stream of visitors has also given her a life of her own that’s worth remembering. Where two or more are gathered…she thinks it’s a party and she enjoys it. It’s even more fun when she can look forward to it (like when we celebrated “Hugh Twyman Day” along with Mark’s and my mom’s birthday last week).

I know her being here is divinely orchestrated and an incredible gift to our family. The hard parts (getting up through the night, the extra laundry, feeling responsible for her engagement and worrying about her health issues) haven’t really been that hard. I’m surprised that I’m not dead tired all day but I’m not. I have an incredible support system and really feel that I can ask for ANYTHING I need. I promised everyone close to me that I would do that.

I’m learning so much about the dynamics and logistics of elder care that I hope to pass on some strategies and tips.

 

Kate

The Best Excuse for Breaking a Promise to Yourself

Kate

Kate on her birthday

Since committing to the 500 word challenge, I have been setting the alarm earlier and only hitting snooze twice (I can’t conquer all the bad habits at once) in order to write before the rest of the house wakes up.

If I’ve had a restless night’s sleep, I’ll skip writing in the morning if I expect a chunk of time later in the day. (I’m a shrew when I’m tired).

Friday was one of those days where I knew I would have at least 3 hours of down time after dinner in order to write my 500 words. Three of the kids had plans and Mark always works late on Fridays. Kate, my 13 year old, likes to watch the “Modern Family” marathon on Friday nights so I knew I would have uninterrupted time to write. (I know I’m going to hell for all the TV this family watches since we upgraded the cable from basic only).

I was all set to take the laptop into our new finished basement room for some quiet when Kate asked if I wanted to watch “Modern Family” too. I really didn’t but I knew it was important to spend that time with her. I could have brought the lap top with me when I plopped myself on the couch next to her, but then I might as well have been alone in the basement typing away.

You might be thinking, “That lady’s just rationalizing, who wouldn’t rather watch ‘Modern Family’ than stick to a commitment?” Well, you may be right on point A, but not point B. I may be rationalizing but I don’t enjoy watching TV that much-even “Modern Family”. Oh, it’s hilarious, but there are a hundred things I’d rather do than sit and watch TV.

Here’s the thing, though, my first priority is always my family, especially while the kids are still here. First on my list of responsibilities is nurturing relationships. As you can imagine, life with almost 4 teenagers (11-16) can sometimes be…..volatile. A 13 year old girl is often in the eye of whatever storm happens to pop up. Kate’s been feeling picked on and misunderstood lately and she needs all the relaxed interaction she can get. Although TV is a passive pursuit, when a person wants company, it becomes an opportunity to connect and relate.

I’ll never regret being intentionally present with any person in my family. To be honest, I probably don’t make time for it often enough. Which is ironic because the kids are home all day for school. If writing suffers for it, I’m totally fine with that.

Kate and I laughed together, talked about other things and when she asked if I snored like Gloria while I was pregnant, I admitted a symptom much more embarrassing that horrified and amused her at the same time. She may use it against me one of these days in the heat of a teen microburst but it’s worth it if it strengthens our connection.

As I wrote before, I made the 500 word challenge a priority. Obviously, I’m hoping to improve my writing skills but I honestly think making time for it will make me a better everything….wife, mother, friend, sister-you get the idea. The practice of writing must light up a part of my brain that helps me be more organized, calm and focused. I credit the act of writing an ebook this summer with helping me to truly enjoy an unusually chaotic 3 months. I typically don’t deal with chaos and extended time away from home very well.

Although writing is a priority, the burden is on me to carve out time for it that doesn’t interfere with my primary vocation as a wife and mom.

So, I’m forgiving myself this time because I was reminded that life, especially with kids, is unpredictable. Clearly, I need to be more disciplined to wake up early if I want to write.

If you want to establish the habit of writing, check out Goinswriter.com. In addition to the chance to join in the challenge, there’s lots of inspiration and practical advice to help you write better.

Happy Spaghetti Wednesday!

spaghetti dinner night before Thansgiviing

KIds Eat First

I posted last year about my family’s Thanksgiving tradition that we call Spaghetti Wednesday. I thought I’d take some time to explain what it is, how it started and why it’s been such a great tradition for all of us that we all love.

When Mark and I bought this house more than 18 years ago, we were both working and not unlike many new couples, spent most of our holidays running around. It wasn’t only his family and my family, it was his family, then my dad, then on to my aunt’s house where my brothers and I always ended up to relax and laugh with our closest cousins. Since my mom would usually be there, that’s where I typically saw her.

The first year in our new house, I thought it might be nice to have my side of the family over the night before Thanksgiving so Mark and I  had less running around to do on the actual holiday. Seeing my family the night before Thanksgiving would eliminate the running on Thanksgiving day. My side of the family wasn’t really adamant about anything, though they wanted to see us and we wanted to spend time with them. If everyone came to my house the night before Thanksgiving, I could see my brothers, mom, dad and stepmom the night before Thanksgiving, have dinner with Mark’s family on Thanksgiving day then head down to my aunt’s after dinner to hang out with the cousins.

My family's night-before-Thanksgiving tradition

Hanging out and visiting

My side of the family was all for it. Since most of my brothers were still single their only plans were meeting friends out for the biggest bar night of the year but dinner didn’t interfere with that.

I debated for weeks about what to serve and decided that spaghetti and meatballs was easy and everyone could easily contribute a component of the meal…salad, bread, appetizer and dessert. The spaghetti and meatballs part is so easy to make ahead.

As we’ve added spouses and children to the mix, we’ve grown beyond the dining room table and serve the dinner buffet style now.

Those cousins that we grew up with have been joining us for dessert for the past 5-10 years because it’s just easier for their families, too.

My mom now lives a few houses away, so she hosts dessert which gives me and Mark a chance to clean up, visit with everyone as guests and go home when we’re tired.

It’s been great for all of the brothers and their spouses who appreciate spending time together and being able to spend Thanksgiving with one family. It just makes the day easier for everyone.

I tell everyone about this tradition and so far, it hasn’t taken hold. One day it will and I hope to get the credit. You can thank me later.

So, Happy Spaghetti Wednesday everyone! Be safe!

the road to being home

Being Back Home!

the road to being home

The best roads always lead back home!

I’ve had sort of a whirlwind June. Luckily I had no plans for an “intentional summer” or big DIY projects like last summer, otherwise, I would be feeling frazzled and defeated right now. The first weekend took my girls away. Kate has since returned. After Mark got a mini-retreat with Hannah at my aunt’s, he came home, too.

Junior tennis

Backhand: weapon of choice

Luke spent the 2 weeks after that training all day, every day for a big tennis tournament in Lancaster. Although he lost a 3 set heart-breaker in the first round, he kept winning in the back draw and ended up playing in the finals of the back end. He got a lot of great matches and played really well overall. The logistics of that tournament were tricky since every day is unpredictable. Mark left with him on Friday, I stayed behind while Mark’s baseball team played their play-offs (and won the championship!) I ended up leaving home on Monday mid-match, willing to turn around if Luke lost but he ended up winning. Mark left him with another tennis friend who also was still alive, I intercepted Luke and we were there for 2 more days.

I’ll pick Hannah up this weekend and we’ll all be under 1 roof for the first time in 3 weeks. Hannah asked to stay with my aunt for another week. Since she has no formal obligations and my aunt is really enjoying and benefitting from her company, I agreed.

As I mentioned in his birthday post, Mark is LOVING baseball and loves being with his team so I fully committed to allowing him to play All-Stars. This is a first for us. Usually, I like to leave July and August open for us to go to our cabin in the mountains on the weekends. In the past, both boys have been ready for the season to be over after play-offs and played a few post-season games. It turns out that Mark’s team will likely play throughout July and I agreed to take him to a tournament overnight 3 hours away. He’s looking forward to staying in a hotel and he really loves being with this group of boys, one of whom is his best buddy in the neighborhood so that makes it nice.

This summer, I’m letting life happen. It’s been a little hectic but enjoyable. The kids being older and more self-sufficient helps. As much as I’d like to finish some projects around here and at the duplex, I’m not stressing about it. We still evaluate each opportunity or obligation as it is presented. I really want to allow the kids to have unique experiences if they’re able. Cost is always a factor so, we’ll try to make it work.

Traveling up and down the Pa Turnpike hasn’t been bad but it makes me realize how much I love Being Home 😉.