Category Archives: Caregiving

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.

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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.

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Bilateral Patellar Tendon Rupture~Recovery Pt. 1

bilateral patellar tendon rupture and recovery

Warning: This is a LONG post. If you or someone you know has suffered this rare injury, I hope it helps. That’s pretty much the point of it. The post will bore everyone else. This is the first of 3 parts. Part 2 covers weeks 2-6. In part 3, I talk about Mark’s experience during weeks 6-12.

It’s important to note that your experience might be completely different depending on your ability to rehab at home after the surgery, your age, weight, whether you have someone at home with you 24/7 (our situation) and the type of repair that was done. Mark did not require cadaver tendons which might have affected the healing timeline on the front end.

This post contains affiliate links to products we used (and are using). If you purchase a product I receive a small commission at no additional cost to you. I took the time to include links for your convenience, too. You probably have a lot going on.

Here goes…

It’s been three months since Mark got hurt at work. It seems like we are just coming up for air. Though, he still has a long road of recovery ahead.

Mark wasn’t cleared by the surgeon to try to stand at therapy until 2 months after the surgery. He was completely NON-WEIGHT-BEARING and LEGS LOCKED IN EXTENSION for two full months.

Since blowing both tendons is so rare (even the health professionals kept forgetting the ramifications), there’s very little information on the internet about recovery.

Non-weight-bearing means a completely different thing when you have one good leg. Logistically and therapeutically.

Weeks 1 & 2: Care and Comfort

The first week was all about pain management, getting regular (KWIM), comfort and avoiding blood clots.

Since I was helping Mark with every single maneuver and task in the first few weeks, it was great that friends and family (who really couldn’t do much else for him) brought meals and gift cards to the local grocery store that made feeding Mark and the kids easy on the fly. (It’s not even possible to express how humbled, grateful and relieved I was to receive this type of support so I won’t even try. If you know someone going through this, it’s an excellent way to help).

Mark was pretty much finished with the pain killers within 7-10 days.

The hardest thing was getting comfortable with both legs locked in extension in braces.

Mark also experienced an almost constant tingling, numbness and coldness in his feet, especially from the ball of his foot and toes. The kids or I would squeeze his feet with light pressure to relieve this as often as he asked. It gave him very temporary relief. Now that he’s on his feet more, he doesn’t notice it as much. At least it doesn’t bother him if it is there.

One dose of Senekot at night worked great to get the pipes moving that were jammed up from pain killers. ‘Nuf said.

Otherwise, good food, hot coffee in the morning, a captivating book and “The Sopranos” (loaned by a neighbor) kept things bearable in the beginning. We are so lucky to have the most thoughtful and generous friends and family. People were so supportive and thought of ways to ease the burden and this terrifying turn of events.

Blood Clots

Mark was on Lovanox shots (in the stomach-super fun) for 3 weeks post-op then 325 mg of aspirin 2X per day.

Ten days after he was finished with the Lovanox, he experienced a sudden onset of back pain (kidney/lower lung) in his left side. Accompanied by an occassional catching when he tried to take a deep breath.

No other classic symptoms associated with blood clots (swelling, other shortness of breath, chest pain). His symptoms improved with ibuprofen and lasted about 12 hours. We wrote it off as muscle pain or strain.

Two weeks later, the same pain returned in his back on the right side. This was more severe, lasted longer and again improved with ibuprofen. Since it was the second episode, we went to the ER. (No easy task when you can’t get into a car-grateful for a good friend who jumped in with his wheelchair van.)

Turns out that he had a clot in each femoral artery and pulmonary emboli in his right lung.

Long story not short, the hemotologist put him on 15 mg of Xarelto 2X per day for 3 weeks then 20 mg once a day until at least 3 months after he is completely mobile and unrestricted. He has had no problems on Xarelto.

My advice, don’t mess around with aspirin after the Lovanox. Insurance company will resist because it’s supposedly expensive but beg the surgeon to campaign for it or get a hemotologist to confer before you leave the hospital.

Hopefully you can afford the copay. If not, get to the ER as soon as you get whiff of a symptom, no matter how difficult it is.

Miscellaneous Comfort Tips

We realized a day or two after Mark got home that he got a lot of relief by laying flat and resting his legs on bed pillows long-ways. Sometimes two under each leg. It relieved pressure in his lower back and reduced swelling in his feet, ankles and legs. It also got his heels off the bed.

Mark iced his knees fairly regularly in the first two weeks. I left the hospital with the ice packs and covers plus refill ice packs. These 8 gel packs can also be heated and have come in handy for stretching once therapy started outside the house.

Therapy

Healing. That’s it. One week post op, Mark had an appointment with the surgeon to remove the surgical bandage. The next week he went back to get the staples removed.

Transportation

Mark was unable to get into or ride in a normal car or van. Even if he could have gotten in without levitating, he wasn’t allowed to bend his legs. We were lucky that the worker’s comp covered all transportation costs until he was able to get into a car. They sent a wheelchair van for all doctor visits and therapy.

Equipment

Here is a list of “MUST-HAVES“: Mark was injured at work and the Worker’s Comp carrier has been great about getting him everything he needs to help with his comfort and recovery. We are lucky NOT to have co-pays.

If you have high deductibles and are blessed with family and friends who really want to help, maybe they would be willing to help you afford these things for a few months.

  1. Urinal (get one before you leave hospital)
  2. Wash basin (again, hospital)
  3. Extra wide bedside commode (not the drop-arm model which would be a death trap)
  4. Ramp if you have stairs to the first floor of your home
  5. Sliding board
  6. Reclining Wheelchair (if possible)
  7. Case of wipes
  8. Fully automatic hospital bed (this is an affiliate link but you won’t likely be able to afford this. Insurance probably will. Campaign for the fully automatic. But get whatever you can.)

Since I cared for my aunt in our home for two years prior to Mark’s accident, we were equipped with a ramp into the house, a bedroom on the first floor with a fully automatic hospital bed and an extra wide bedside commode.

Mark’s not a big guy so he likely wouldn’t have been approved for the extra wide commode (insurance approval is based on weight)-but we had one. Knowing what I know now, I would have paid the difference or bought one outright. It makes sponge-bathing himself so much easier and more comfortable. Since we don’t have a shower on the first floor or even a walk-in, this is important. Even if we had an accessible shower on the first floor, getting in there would have been virtually impossible with his restrictions in the first 8 weeks.

Also, Mark avoided a bed pan by learning how to maneuver onto the commode. Sorry for the graphic detail but this would be important to a person facing this injury.

Being locked in extension (legs straight out in braces) and non-weight-bearing, made transfers (even to a wheelchair or commode) tricky.

Luckily the hospital PT showed him how to slide onto the commode and wheelchair while his legs were still supported on the bed. He scooted sideways on the bed then backed into either chair. See photo below to see what I mean: (sorry for the blurry pic but gives you an idea).

how to transfer to wheelchair with bilateral patellar tendon injury

In the wheelchair, he would slowly back out while I supported his braced legs until the wheelchair leg supports could be swung into place (either by him or one of the kids-yes, a 3 man operation at first). Another trick was bridging the leg supports with 2 sliding boards so his legs wouldn’t fall through or have to be strapped to the supports. See photo below:

Reclining wheelchair and bridge for legs

Reclining wheelchair and bridge for legs

We have a chair in the living room with a weirdly large ottoman. Both are low and were easy for Mark to slide onto from the wheelchair. (Photo below) If not for this furniture, Mark would have been stuck in bed or the wheelchair for 8 weeks.

bilateral patellar tendon rupture recovery and support

Let’s talk about the wheelchair for a minute.

The equipment company sent a lightweight wheelchair sized according to Mark’s height and weight. As much as I appreciated the size for maneuverability through the house, the narrow seat was uncomfortable for Mark since his legs were locked straight out in front of him. Imagine sitting upright in any chair with your legs straight out.

After a couple of tries, they found him a reclining chair which was much more comfortable for long periods of time (trips to surgeon, ER and in a wheelchair van).

The seat base is wide and deep and the ability to recline the back even a little makes a big difference.  If you can get your hands on one of these bad-boys, even if you have to buy it yourself and resell it on Amazon when you’re finished, you won’t be sorry.

Hospital Bed

As I mentioned above, we already have a hospital bed because I cared for my aunt before Mark was injured. I’m guessing most insurance companies will authorize a hospital bed because they were asking if we would need one when Mark was still in the hospital. Get one if you can. If you can get a fully automatic one, get it. The bed made sleeping on his back bearable.

Mark didn’t need the trapeze so we sent it back. A bigger person might need one.

This post is getting loooong so I’ll tell you about the next 4 weeks post-op (weeks 2-6) in the next installment. I hope this has been helpful.

 

 

 

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In Sickness & In Health

wedding

So, Mark and I are celebrating our 23rd anniversary today. Just shy of 3 weeks after his physical catastrophe.

I’m not an overly emotional or sentimental person but I clearly remember my voice cracking only once during our vows…”in sickness and in health”. In an instant, I was overwhelmed by the thought of him being sick and vulnerable.

He’s had some minor surgeries (that dual hernia operation just before our 10th anniversary wasn’t too fun) but nothing as challenging as this.

The thing is, as challenging as this is physically, emotionally and probably financially, I know it isn’t even close to the worst that can happen to a couple. Not even close.

So I’m thankful that we work well together because just about everything he does, we do together. I’m thankful that we enjoy each other’s company (as long as he doesn’t try to tell jokes). I’m thankful that we trust each other to get through this. And yes, I’m thankful that we love and trust each other and even on our worst days, there still isn’t anyone I would rather spend time with (no offense to my children, who come second in that category).

I don’t feel all that much different than that day 23 years ago. Marrying Mark felt like the rightest, most natural thing. Helping him do just about everything feels just as right and natural (though, I have to keep reminding him the kids can fetch the this or the that when they’re here).

Happy Anniversary. Oh and Happy Birthday to Luke who was our 5th anniversary gift!

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Crisis Mode

hospital-room

I WISH Mark’s room had a desk like that!

Mark blew out both knees last week. He’s a full-time tennis teaching pro. Yes, that’s his real job.

Truth be told, I can’t believe something like this hasn’t happened before this. He really wasn’t doing anything nutty or risky. He’s pretty conservative because his joints have always ached. He dislocated both shoulders before he graduated from college. Plus, teaching on a hard surface 8-10 hours a day for 30 years might lead to some wear-and-tear.

Here’s how I react to crisis:

My brain goes into hyper-efficiency lock-down. Do the bare minimum. Prune the unimportant, take care of only what’s necessary. The kids are at an age where they’re pretty self-sufficient and can help each other get where they need to go. I also have lots of family and good friends around who can help. (S/O to my brother John who took care of details at home when it happened).

The other thing my brain does which makes me hopeful and positive is to think about how much worse things could have been. In a weird, backwards way, it helps me be grateful even in what seems like a catastrophe.

Here’s what I’m talking about:

  1. Mark had just returned from taking Luke to a tournament in Boston. He easily could have been walking fast or running for a flight and this could have happened. I can’t imagine how traumatized Luke would have been on top of managing this type of crisis long distance.
  2. I’m glad it happened at work because…worker’s comp.
  3. I’m grateful I don’t have the stress of managing a job outside the house on top of this.
  4. I’m grateful I didn’t get the car crash call or the heart-attack-on-the-court call.
  5. My mom can care for my aunt at her house while we get our bearings again. That means Mark has a hospital bed and a bathroom on the first floor because he won’t be able to bear weight on either leg for a while. My brain hasn’t quite caught up to that concept but we’ll deal with it.
  6. Mark ran up to our cabin by himself the weekend before this happened to take care of some things. It’s remote and even if he remembers to take his phone with him, reception is sketchy. The nearest neighbor is not visible through the woods. Shudder.
  7. Most surgeons haven’t seen a bilateral rupture of this type but it is repairable and they’re confident that he will be better than he ever was.

So, that’s how my brain works. You might think it’s pathetic denial but I’m sticking with it. It has given me a better outlook on what’s ahead.

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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.

 

 

 

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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!

 

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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.

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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.

 

 

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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.

 

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