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.