Tag Archives: elder care

The Stress of 24/7 Accountability of Caregiving

My Theory About Why So Few People Truly Understand Caregiving

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.

Caring for My Aunt~An Update

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.

Elderly Aids and Equipment-Furniture Blocks

Taller Furniture Please!

It isn’t uncommon for older people to have difficulty getting into and out of furniture. Height is a concern and arms are essential for leverage for most elderly people to boost themselves out of a chair. None of the chairs or seats in my home accommodated this limitation.

My aunt sat in a wheelchair provided by medicare for the first few weeks in my home. She would walk (with the aid of a walker) from room to room for the exercise and one of us would follow behind with the wheelchair so she would have a place to sit in every room. Not only did that become cumbersome, it didn’t provide her with much independence. I was determined to find sturdy chairs that were tall enough with arms. No easy task.

It turns out that my porch chairs are sturdy and wide enough with arms for leverage when my aunt wants to sit or stand but they aren’t quite tall enough. My mom suggested bed risers. They’re affordable, come in various heights and material and accommodate a variety of leg styles. I chose the 3 1/2″ wooden risers. They don’t compromise the stability of the chair at all. This has been a perfect solution and works very well for any chair that doesn’t need to slide or move (like one that needs to slide closer to a table for eating).

I also purchased an office chair for the table in her room. The wheels make this chair less ideal because my aunt either needs someone to hold it or she has to get the chair against an immovable object or wall in order to get up without it rolling away from her. It works better in her room than a chair on blocks because she sits at a table and can swivel around.

Believe it or not, the easiest chair for my aunt to get out of is her bedside commode. I used the seat height, width and arm height as the template for my chair search.

I would love to hear if you’ve busted through any furniture barriers without a lot of expense or an exhaustive search.

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Why I Care for My Elderly Aunt at Home

2 Replies

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.

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.

Being Home

Encouragement to help you make the most of being home