Tag Archives: caregiving

Appreciating the Ability To Be Spontaneous

When my 3+ years of caring for my aunt came to an end, the thing I appreciated most was the ability to be spontaneous.

Spontaneity is nearly impossible (even for a quick trip to the grocery store) when you’re caring for someone with dementia.

Two weeks after my aunt passed away, Luke started his freshman year at college. Taking him shopping for dorm stuff and school supplies felt like a luxury. The day he moved in, I had time to help him get his room ready, hang around while he hit with a teammate and then drive him to another teammate’s home club where he was going to hit again then spend the night.

It was so nice to stay for 2-3 hours longer than I had planned without making arrangements.

More than two years later, I still appreciate being able to linger over lunch with friends, attend a sporting event without watching the time and make plans on the fly.

A Definition of Success

My definition of success has evolved as I have navigated life but watching the kids launch has refined it even more.

Me as a kid: “Success = a good job (lots of money)”.

Me with a good but stressful job: “Success = freedom”.

Me home with the kids after quitting my good job: “Success = raising successful kids”.

Me as the kids have become more independent: “Success = freedom + learning new stuff (growth)”.

Me as a caregiver: “Success = not dropping too many balls”.

Me with a part-time legal gig, projects and properties to manage, parents to help, a healthy husband (walking on two legs) who loves what he does and kids who are doing all different things but seem to be moving forward thoughtfully: “Success = freedom + growth + fun”.

 

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.

 

Celebrating Holidays When You’re Wiped Out

easy holiday preparation

Spaghetti Wednesday  is our favorite holiday around here. Mark was finally walking without crutches. It’s the first year since 2014 that I wasn’t also taking care of my aunt so I was happy to host the dinner for the 21st year in a row.

It was a late night and then a low-key, us-only Thanksgiving but I was wiped out. No doubt, the four previous months of intense caregiving contributed to my fatigue but I honestly didn’t expect it.

The question is: how to prepare for Christmas? It’s easy for me during Advent to prepare spiritually. I have no trouble slowing down and putting off the rush and crush, but when everyone around you expects holiday activity, it’s a little overwhelming.

I stopped sending cards a few years ago. It was getting to be a chore that I no longer enjoyed. The kids got ornery about posing for photos. It’s difficult to genuinely send “best wishes, peace and joy” when you’re resentful (never of the people, just the activity). So I don’t. I still think about and pray for people. I give others credit for continuing to send us cards. I still enjoy seeing the photos every year.

I love christmas lights in the house but Mark always takes care of the lights outside. The sweetest neighbor offered to help with that but we declined the offer. Mark was able to do most of his usual light hanging. My brother went up the ladder to hang the big wreath on the side of the house.

To be honest, Mark welcomed the non-strenuous activity, the weather was pretty mild and he finished everything outside in a couple of hours over two days.

Inside, I’ve just been taking my time and getting one project/area out at a time. I have the time and have enjoyed doing it at a leisurely pace. Little Mark is elf-like. I have referred to him as joy boy, which is still true. He’s always up for holly and jolly. I find myself waiting until he’s home for certain tasks just because they’re more fun with his help.

So, my advice for facing the holidays when you’re tired or overwhelmed is to abbreviate and get out one thing at a time. You’ll probably realize that a little bit of glow is enough.

Bilateral Patellar Tendon Recovery~ Pt. 3

Recovering from bilateral patellar tendon rupture

Welcome to part 3 of this series. You can read parts 1 and 2 to get you up to speed.

This is where things (meaning Mark) got going (finally). Things seemed to progress so quickly during this time period (from complete dependence for just about everything to almost complete independence) that it’s hard to remember what happened when but I’ll do my best.

Mark was scheduled to meet with the surgeon for the third time 4 weeks after his staples were removed. The transportation company cancelled at the last minute and we had to reschedule for the following week. Since his appointment was on a Thursday, it took almost another full week to schedule the initial consultation with a physical therapist who was highly recommended for this injury. My point is, your circumstances might put you a little ahead of Mark’s progress when you account for weekends and our delay.

We continued with the bending therapy in the meantime. The surgeon added heel slides. This engaged Mark’s quads. They sound easy but weren’t. Same set-up with locked leg resting on the ottoman. Mark sat on the edge of the chair with his other heel (unbraced leg) resting on a sliding board (sock or other cloth to reduce friction) and used his quad to pull the heel back, bending at the knee. This was another exercise that showed slow but definite progress. He got stronger and more steady by the day. This exercise also showed how much his quads had atrophied and couldn’t possibly support his body in a standing position. Crazy!

It’s important to note that we relied on a transportation company with a wheelchair van for all follow-up and therapy appointments until a couple of weeks into formal physical therapy. Luckily, worker’s comp covered this with no issue.

Weeks 6-12

Mark went to therapy at least 3 times before they had him stand (with crutches still locked in extension).

During these sessions, they moved his knee cap around, stretched him, measured his range of motion, loosened the quad muscles using a thing that resembled a butter knife and did e stim and ice.

Mark was also able to get into the pool with help of a lift. We chose this facility specifically for access to the pool. I have no doubt that this accellerated Mark’s progress. His ability to move freely in the water without braces improved his range of motion and leg strength without the risk of falling or unnecessary stress on his knees. It also helped with Mark’s stability. If you can rehab at a place with a pool, definitely choose that option.

On October 3, which was 2 months to the day after his surgery, Mark was on his feet for the first time. The blood rush to his feet was so uncomfortable and distracting that it was hard for him to focus on his balance.

Mark was so wobbly that first time that it was hard to imagine him walking again. But the therapists explained that his brain just had to remember what this standing was all about. They brought a full length mirror over to help the brain make the connection.

Fear is another factor here. He was on crutches with a therapist on either side but you have no confidence that your legs/knees won’t collapse.

Two days later, they got Mark on his feet for a few isometric and balance exercises. He was a lot more steady and a lot less fearful. He was confident enough to do a round at home. So, by his fourth day of therapy (weekend and days in-between) he was on his feet for exercises only. He was still locked in extension, so picture Frankenstein. Also, we still relied on the wheelchair to get anywhere in the house. It was another week before he was pivot transferring to and from the wheelchair instead of sliding or scooting into the chair.

By the end of the second week of therapy, he was allowed to take his braces off at night for sleeping and when he was just sitting around at home. His legs still didn’t bend easily on their own so he mostly still used the ottoman but would sit with his legs bent and resting on the floor for increasingly longer periods of time.

By his second full week of therapy, his sessions were 3-4 hours long. He worked in the gym standing, stretching, doing isometrics and other manipulations with a therapist nearly constantly at his side. They unlocked his braces to 30 degress and started letting him walk at therapy with crutches. If he buckled or tripped (which he didn’t), his legs wouldn’t bend more than 30 degrees. The crutches were more for stability than weight-bearing. He also did pool work (mini squats, walking, bicycles while floating in an inner tube, step-ups and downs, side steps) for 60-90 minutes then back to the gym for ice and estim for 30 minutes.

I accompanied him to therapy (driving him after he could sit in a car) because he needed help changing after his pool work. Remember, at this point, he wasn’t supposed to stand without the braces which makes it hard to undress and dress-especially when you’re wet.

Mark was able to manage by himself even after the pool sessions (freeing up my days and weeks considerably) at about the 12 week mark. HALLELUJA! It was just about at this time that Mark was cleared to do stairs and was finally able to sleep in our bed upstairs.

Some Final Random Notes:

This time period definitely saw the most notable progress. Mark got more independent by the day. We’re a few days from the 4 month anniversary. He still notices sustained but slow progress.

Mark’s knees are sore after therapy because they work him constantly. Ice and rest helps. He’s been walking without braces and crutches for about 3 weeks. He’s been showering (with a bench in our tub) since right around the 12 week mark. He still walks pretty stiff-legged, gets fatigued easily with too much walking or standing and has experienced swelling in the ankles for the same reason.

We took Luke to a tournament in New Jersey the weekend of November 12 (3 months and 1 week post-op). Mark had been cleared to drive but could only do so for about an hour before he got too stiff and sore. Also, his ankles were swollen when we got back. Probably 6 hours in a car and watching two long matches before that. Other than that, Mark can run errands on his own and drives himself to therapy.

Mark’s left knee is still behind the right in terms of range of motion and pain. Nobody seems to be concerned about it. As my friend (a PT) explained, you would never expect two injuries to respond exactly the same way, even in the same knee or joint. That makes sense but it’s frustrating and a little scary for him.

It’s too early to tell when Mark can return to work. If he had a desk job, it would be sooner. As a tennis pro, he’s typically on his feet 6-10 hours a day. That’s not possible at this point. Plus he needs the extensive therapy to continue to progress.

I don’t intend to write another whole post but will likely add a footnote to this one when he’s finally back to normal just to give you an idea of how long the process was for him beginning to end.

If you have any specific questions about this injury, caregiving, progress you can find my contact information by clicking the “contact” tab at the top of the page.

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!

 

31-days-of-ted-talks

Touch As An Antidote to Loneliness

This particular TED talk has personal implications for me.

As I mentioned in this post about my aunt’s improved health since she came to live with us, loneliness is as serious a health risk as smoking and obesity.

Helena Backlund Wasling, a leading researcher in the science and benefits of touch explains how soft touch activates parts of the brain that control emotion. It’s a key element in reducing stress, forming relationships and connecting with people.

Caring for My Aunt~An Update

health risks for elderly

It’s been over a year since my aunt came to live with my family. It’s taken nearly that long for her body to adjust to the change.

Although I expected her health to improve once it looked like she would survive the whole ordeal, I didn’t expect her to get as healthy as she is. She was extremely weak, confused and recovering from multiple infections, dehydration and years of sleep deprivation, malnutrition and mismanaging her medications.

There are a few factors that I believe have contributed to her overall wellness. In no particular order, I’ll list them below:

1. Adequate Sleep

None of us realized until we slept with a monitor overnight (in case she calls)  just how often my aunt woke up to go to the bathroom during the night (4-5 times). I think she was more worried about having an accident than she was likely to.

When she lived on her own, she was physically incapable of changing her bed linens and I believe she got herself up a few times a night as a precaution.

Her habit was to go to bed at 9:30 pm after she took her pills and wake up in time for Mass on EWTN at 8 am. We continued that when she came for the sake of continuity and routine but a better schedule has evolved.

Last summer, we didn’t think it was unusual that she fell asleep in her chair throughout the day even if people were visiting. She did that before she came all the time. Now I know why.

We figured out together that my aunt prefers to get ready for her day after Mass (9 am) because she can watch it from bed.  Most mornings, she sleeps through it.

Her caregivers come at 7:30 every night to help her get ready for bed rather than 9pm. Sometimes she falls asleep as early as 8:30 and often sleeps through the night (thank you, Jesus!). Like I said, this schedule has evolved through discovery. An outsider might think that she spends too much time in bed, but I know it’s been beneficial to her and to the whole situation.

There’s tons of research about the restorative benefits of sleep and I agree that it’s had a healing effect on my aunt. Unfortunately, her short-term memory hasn’t improved but because she’s rested, she doesn’t fall asleep during waking hours anymore so her interaction and engagement with people who come to visit has improved.

2. Elevating her feet

After a scary bout of swelling, leg ulcers and cellulitis last summer, her doctor recommended elevating her feet for 2 hours a day. Since the only way to do that is for her to get on her bed, she does that every afternoon. Sometimes she falls asleep but usually she just watches EWTN or prays the Rosary.

This practice really has prevented recurrence of any of the conditions that led to it, gives us both a much-needed respite and adds an anchor to her routine.

3. Nutrition

My aunt’s diet for the couple of years before she came here was a piece of cottage cheese toast twice a day with her medicines, a big glass of V-8 mixed with a gross amount of fiber powder twice a day and whatever her best friend could prepare for the two of them in her own compromised state of health and immobility.

Now that she’s here, my aunt eats about a cup of cereal with almond milk every day for breakfast and a cup of coffee. For lunch she enjoys a sandwich and a pickle. I say “enjoys” because she prefers not to deviate. She loves that sandwich. She likes a few peanut butter crackers when she gets up from her rest then has a regular dinner with the family which almost always includes a protein, a vegetable and a full salad.

My aunt has lost nearly 60 pounds on this casual but healthy plan since she came. She moves so much better, no longer suffers from chronic hip pain, does not struggle to walk or stand from a chair and is able to get in and out of bed without gasping for breath and getting winded.

I know first-hand this diet is so much better than the institutional foods she was eating in the nursing home. The food was gross (loaded with carbs, sodium and sauces) and they almost always offer a dessert (who could resist?) and soft drinks at every meal-yes, even breakfast.

4. Fresh air and sunshine nearly every day

My aunt NEVER went outside before she came to live with us. She preferred the comfort of air conditioning and she was terrified to fall.

I didn’t imagine that she would want to go on the porch but it turns out she spends the better part of her days there when the weather cooperates.

It’s a great part of her normal routine and gives all of us a little more room to spread out. Our house is small as it is for a family of 7 (including my aunt). Extra livable square footage is great. The porch is shaded but open so she can watch what’s going on in the neighborhood and in the back yard when the kids have friends over. It connects her to the outside world. That’s been a great thing.

5. Regular human touch and interaction

It’s not uncommon for older adults to become isolated and lonely. Despite efforts from her closest friends, when my aunt quit going to daily mass and became increasingly housebound due to her fear of falling, she was alone most of the time.

She didn’t seem discontent but she was becoming more desperate for visitors. As much for the help as for the company.

She requires care and assistance for all of her personal needs. The normal interaction during that process by people who she knows and physical touch has to contribute to her health.

According to some alarming research, social isolation is as deadly as smoking and about twice as risky to seniors as obesity. Studies show that loneliness impairs immune function and boosts inflammation. SCARY, isn’t it?

6. Prescription Management

Thinking back to the times that I would visit my aunt, I suspect that she was over-medicating by as much as 2X the prescribed dosage.

When she sorted her pills in the morning, she put her evening pills in a little tin. Then evening would come and out came the bag of medicine bottles again and she’d prepare her evening pills and put her morning pills in the little tin.

Wait a minute-didn’t she do that in the morning? Didn’t she already prepare he evening dose? Yes and Yes.

Now that I’m managing her prescriptions, it’s not unusual for her to ask whether she took her pills and she doesn’t believe me sometimes when I tell her she did. Her short-term memory doesn’t work.

The statistics for prescription mismanagement in the elderly are startling. According to the CDC,  there are nearly 700,000 ER visits each year for adverse drug events in patients over 65. An estimated 23% of nursing home admissions are due to the senior’s inability to manage their prescriptions on their own (Pillpack.com anyone?). 

No question my aunt would rather be living the life she remembers….active in the church, instructing adults in the faith, visiting shut-ins, helping the Daughters of Charity with their administrative work and playing the piano every week at a local restaurant near her former home. But since she can’t do those things any longer, we’re trying to keep her safe, secure, happy and healthy here.

How a Mammogram Made my Day…It’s not what you think.

How a mammogram made my day

Source: Abdulsalam Haykal on Flickr

I went to a mammogram appointment this week and had the sweetest experience…(NOT THE MAMMOGRAM). The fact that it was a mammogram is only important as it relates to what I noticed about a couple who came in at about the same time as I did.

An older couple parked at the same time as me and we ended up in the same office. The woman was using a walker but seemed too young to be using it. Also, she seemed pretty steady on her feet. Maybe early seventies. Her husband looked a little older. Both of them were smartly dressed. She moved so well with the walker that I was thinking maybe she was recovering from an accident.

They checked in (he did the talking) and the man directed his wife to a waiting room chair. He told her he would be waiting out in the lobby just outside the suite. She was fine with that. Before he left he quietly conferred with the receptionist and she assured him that she would “remind the technicians”. Within a minute or so, the man came back in and sat next to his wife and told her he decided he’d rather wait with her. “Thank you very much,” she said.

Next the man pulled out the magazine section of the paper and handed it to her because he thought she would enjoy it. “Thank you”, she replied to his thoughtful gesture.

In the next area where you change and wait again, (why it made sense to disclose that we were there for mammograms) the attendant showed the woman to a changing stall then quickly adjusted her strategy and said the technician would help her with the robe.

I could be wrong but my brief observation of this couple indicated that the woman suffered from some form of dementia and the husband was her caregiver, protector and advocate. He was so patient, sweet and thoughtful of her needs. The measures he took to inform the staff discreetly that she required extra assistance seemed so loving and tender as though his primary concern was preserving her dignity.

Not only was it touching, it made me think of Mark (my husband). He’s always as kind and gentle with me as the man was with his wife (though, often I don’t deserve it). Should I require care in our older years, I have no doubt that Mark will be as patient as the man was with his wife.

Thinking of that made me smile out loud.