I think time passes for caregivers drastically differently than it does for most people. I was reminded of that fact today. I got a flyer in the mail to sign my son up for Baseball. Cool! I felt a little guilty that I’d never signed him up for baseball in the past. It’s such a simple (and expected) right of passage. Little-league baseball! Every kid should play a season (at least) of baseball, or softball. Yes, please! So, I decided to take a closer look. I scanned the QR code on the little flyer and it brought up the Little League sign-up site. There you can sign up your child and also order a shirt! I got excited imagining sitting in the bleachers (on a warm summer night) watching him play ball. As I was looking the site over on my iPhone, I realized he is now old enough (twelve years) to only be allowed on the oldest tier of Little League. "That can't be right," I thought. He would be at a disadvantage. The other kids on his team would be way more experienced than him. How did he miss that many years of baseball? Where did the time go I wondered. A wave of shame radiated inside my gut area. I thought: “He should have been playing since Kindergarten. Why have I never signed him up before?” I then realized (as I marinated in a brine of father failure emotions) that I could not sign him up even now. I remember exactly where the time went. I know why I could not now (and never have before) sign him up for baseball. It’s because I'm a caretaker for someone with dementia.
When my son was five years old (not really old enough yet for baseball), my Mother moved in with us. She did so because she was clearly having some "issues." She got confused. She physically couldn't shovel, mow, or get to the grocery store anymore. Her house was looking rough. Even her cats were looking disheveled. These kinds of problems caused me to go to her house every weekend. I'd bring her to the store, mow her lawn in the summer, shovel in the winter, and help her clean. It was getting to be a real drag. She was 83 when we finally just moved her in with us instead. At the time, I chalked it up to her just "getting old." My wife and I decided that when we moved, it would be into a house big enough for Mom to join us. That would solve all these problems caused by me having to drive to her place every weekend. Right? Moving her in was the start of me (and my family) becoming caretakers for someone with Dementia. We just didn't know it yet. And caring for someone with dementia pushes everything else aside I've found. Including baseball.
So, I blame my elderly (and very sick) mother. She's why I cannot commit to bringing my son to evening baseball practices, let alone evening games. Care-taking takes up all your time and energy. It puts you on a deserted island you cannot escape from. She's also the reason I've not been on a vacation in years. She's the reason I have neglected spending time with my piano, my guitar, my wife, and both of our kids. It's exhausting being a caregiver of someone with dementia. It’s all-consuming. I once told my wife (quite correctly) that: “It's like living part of another person's life FOR them." As the years have gone by, the amount of Mom’s life I've had to “live for her” has grown and grown. Any caregiver will tell you it’s surprising just how much assistance some people require. It’s also made me realize that we take a lot of our independence for granted.
My Mom cannot get into (or out of) the bathroom without assistance. She wears diapers, and trust me, adult diapers leak. She cannot dress herself. She cannot bathe herself. She cannot get into (or out of) bed without assistance. Her bedding needs to be washed almost every morning. She has to have her medicine sorted and given to her. At some point, I needed to start hiding her meds inside of blueberries and grapes, or she refused them. Thus, her medicine prep and meal prep are a meticulous daily routine. She must have all her meals prepared and delivered to her on a tray. That tray always needs to be cleared. Sometimes, she clears it herself by tipping it over. Every day, every meal, non-stop. Tick-Tock. Some meals have to be fed to her one bite (or spoonful) at a time. She has a good appetite still and can handle a deli sandwich just fine, but I’m not leaving her alone with a bowl of soup, or a plate of spaghetti! Not anymore. She is past that. She spends her waking hours at a senior day program during the work week. I drive her there (Catholic ElderCare in Minneapolis) in the mornings, go to my actual job, and then pick her up again in the afternoon. Catholic Eldercare Day Program has been great, by the way. On the weekends, she spends all her waking hours (downstairs) in a recliner that can be raised and lowered with a remote. She is adorable in her frail old age of 91 years now. She is absolutely cute but brutally exhausting to care for, as I've already said.
Her home is our basement. It has been her home for almost eight years. She has her own bedroom and bathroom. At the end of the hall is our laundry room and the door leading to our garage. She has a den with a TV for her and a wood-burning fireplace. I’m writing this sitting next to the fireplace. It’s lovely. I’ve made a nice enough music studio in one half of the den. I rarely get to play the piano, guitars, bass, stylophone, ukuleles, accordions, etc., though.
There is a baby gate (with six tennis ball-sized silver Christmas bells tied to it) at the bottom of the stairs. Our kids are not babies. The gate is for Mom. If the bells are a-ringing, then Grandma is trying her luck on the stairs! Hint: she doesn’t do stairs! She falls. She needs to be walked by the arm (always) or eventually, she’ll tumble over like a box blowing in the wind. Despite this, sometimes she gets up to wander around. She finds a place to fall on her butt or to hit her head.
I have what I call “GrannyCam” set up to check on her. If I’m upstairs making dinner (or, God forbid, relaxing), I frequently look in on GrannyCam. It’s synced to my iPhone. Is Mom still in her chair? Check the camera app. Occasionally, the answer is a panicky: “no!" So, I run downstairs to look for her. The “Mom Hunt” is on! Did she make it into the laundry room? Did she wander into the bathroom? Has she managed to hurt herself? Will it require staples or stitches this time!? In the past, I've found her sitting on the floor (because she fell) next to the cat pans in the laundry room. I've also found that she has simply moved herself to another chair.
One time, she unfortunately had also relieved herself in that new chair. Her diapers can only hold so much urine before they spring a leak. Her own powered (lift chair) recliner has a plastic waterproof blanket I drape over it. I also have a larger one on her bed. The other chairs in the den do not have waterproofing. I even bought a rubber chair cover for my car's passenger seat for Mom. They sell them at O'Reilly and Checker Auto part stores. The material seems the same to me as a scuba diver's wet suit. Perfect! Before getting the chair cover for my car, she had an “accident” on the way home from the senior center. The car reeked of urine for three days while I attempted repeatedly to clean the seat (using different methods) and purge the smell. I finally found an industrial-strength cleaner at Menards. I sprinkled as much of that pink, sweet-smelling juice onto the car seat as she did when she had her accident. Odor gone! To never have that problem again, I got the wet suit for her car seat. Problem solved!
The care and problems never end though. I used to think when the day finally comes that she passes away from her dreaded disease (Lewy Body Dementia) then I'll get my "normal" life back again. I'll be able to spend time with the kids again and practice my music, my writing, and read my books again. Sometime last year I realized with a shutter that “normal life" would not be returning. Ever. The reason is that caring for her for years in her old age has aged ME significantly. Now, I wonder instead how much energy I'll even have left to take up my “normal” life again.
Anyone reading this is no doubt thinking: "Why not put your mother into a nursing home? She belongs there." Oh, I've thought about it and even acted on it. Let me explain. It went like this: When it was finally time (the first time) to move her into a home, Coronavirus had just started killing off entire populations of nursing homes. Who else remembers hearing about the cook and the custodian of one nursing home in California who took on caring for the now-dying population of residents at the nursing home they worked for? The regular nursing staff (and all other staff) abandoned the seniors to succumb to the virus. These two heroes stayed on! They did their regular jobs and began caring for: bathing, feeding, and cleaning up the senior residents as well! Heroes! I think a similar situation also happened at a Nursing Home in West Virginia. If all nursing homes were staffed completely with people of that kind of character I'd gladly put my dear mother into their watchful care. Sadly, we have to ask "What about the rest of the staff?" How could they just leave? Well, the answer is fear of death, naturally. They all feared getting the coronavirus. Fear made them flee like rats from a sinking ship. So, my Mom stayed with us then because she "needed to be in a home" BUT those homes were (at that time) a death sentence.
Fast forward a couple of years. The virus was now at bay. Sort of. Senior centers and Nursing Homes were opening again. Now, they were caring for anyone who managed to live through the pandemic. I snooped around again for a possible place for my Mom. I knew the burden of caring for her at home was taking a toll on both me and my wife. Bear in mind my preference was still that she stay at home with me and my family. The lack of quality care at many nursing homes came to light due to the pandemic. Now, I was being told things like: "Yes, we are operational again but we aren't taking any new clients because we are short-staffed due to the pandemic." Before that, I was told they were open but not taking any new clients because it was too risky. New clients could re-introduce COVID-19 to the general population.
So, one year of caring for Mom became three, and then five. At some point, I admitted she wasn’t going to get even close to the kind of care I could provide for her (from strangers), no matter how “qualified” they were. Mom lived with us through the pandemic. She survived, thanks to me. When nursing homes were still unavailable (or unwilling) due to the residual effects of the pandemic, I decided I had brought her through the worst, so why not just continue to care for her at home to the inevitable end?
My family and I now refer to my Mom as "The Immortal One." God bless her. She hangs on. She loves cookies. She loves her stuffed animals and dolls. Her favorite stuffed animal is Leo the Lion. She got him one Christmas from my sister-in-law. Now Leo’s fur is rubbed away around his eye (and on other parts of his head) from her stroking his face lovingly. She laughs if you laugh, and she smiles a lot. She has a twinkle in her eye that will always be in my memory long after she’s gone. My family has been on a few vacations without me now. They went to see my wife's father (Grandpa) in Palm Springs, California, without me. They went up to the North Shore without me. They went to the Windy City (to be tourists) without me. Why? Because someone has to stay home to care for Grandma.
Mom has been on “Hospice Care” at our house (twice) and on what is called "Home Health Care” once. These both involved workers who came out to the house. It was nice to have someone come out who understood. The advice and knowledge were excellent at times. Mom finally had an actual nurse here in the house! Great, if only for one hour just once a week. I'll take the help! These were all appointments though. So it did add to my "to-do" list. A nurse, a social worker, and a physical therapist each had a time slot with Mom. Mom couldn't let these nice people into the house though. I arranged to "work from home" on Wednesdays and had the appointments scheduled then.
Hospice even let me put her in another service called “Respite Care” for up to five days. Respite Care is designed to give caregivers (like me) a break. I tried it two times. I’ve decided never to do it again after these experiences though. What it meant was bringing her to a nursing home (for up to five days and nights) so I could go on a vacation with my family and take a much-needed break from caregiving. On both of the visits, Mom’s health took a drastic and fast nose-dive. It was stunning how bad she looked and acted after just five days. She was overly drugged and unresponsive (at the first place) when I returned to pick her up. I could not even get her to stand so I could move her to a wheelchair. I had to pick her up. Also, her room was uncomfortably reminiscent of every jail cell I've seen in the movies. Honestly, when I got there (and saw the room) I was close to going down to the car and telling my family the vacation was off. Instead, I convinced myself that she would be ok. I convinced myself that she wouldn’t even be in that cell except to sleep. I was wrong. On pickup day it was evident that the staff was glad to be rid of her and that she had been a burden to them. It also appeared to me that she was drugged and left in her bed for the duration. The second respite place was much better. They had more staff and the room was more like a dorm room. She even had a roommate. This lady (the roommate) said: “I love you” to me at least a hundred times when I dropped Mom and her things off. She said it to Mom also. It turned out that she had her own brain ailment and she was stuck (like a record) on the phrase “I love you!” She said it night and day. I can’t imagine what it was like for my Mom being told “I love you” in a sing-song voice over, and over, and over again for five days and nights. Yes, there are worse things this lady could have been stuck saying! I know!
That care facility was very good. The staff there cared about doing good work. They took good care of my Mom. Even so, she just didn’t look good at all when I picked her up. I even wondered if she might pass away at home as a result. She didn’t though. She recovered. She survived respite care! Mom (a.k.a. The Immortal One) also tested out of eligibility for Hospice care. She got well enough that a social worker deemed her too healthy for hospice anymore. The same happened with the in-home health care. At some point, they said she was just too mobile to qualify. I was even told that I have: "Taken too good of care of her" so she has become ineligible for support. You'd think the biggest bummer for me would have been losing out on those sweet five-day respite visits to the nursing homes. You'd be wrong.
When Mom “disqualified” herself from Hospice and In-Home Health care (covered by her insurance), we looked into “paid in-home elder care.” OK, so she was “too healthy” for hospice, but we all agree she should never be left unattended? Seems odd that a person like that doesn’t qualify anymore, but OK, I guess. What are you gonna do? The paid option was first presented (as an alternative) by the Hospice (and In-Home) staff’s suggestions. They knew we were being cut off, so they wanted to help. It was clear that some of them even do this paid work on the side. Keep that on the DL though. Wink, wink. I’d also seen some ads on TV about supposed angelic visitors who will come and look after your aged and ill Mom or Pop. Perhaps you’ve seen these ads also? In one ad, Grandma can’t reach her bra clasp, so a sturdy, angelic lady does it for her. So nice! This did seem like a good alternative, offering my family the opportunity to do “Date Nights.” We could do it once a week! We could have dinner and see a movie! We could go out to wander the mall, see the animals at the zoo, visit old friends, walk in the park, ski, take a pottery class, go to a Little League game, start a REVOLUTION!, and much, much more. That was our thinking. At a minimum, it would get me some time away from worrying about Mom. Someone else would carry the burden so I could go a’ gallivanting. Nice.
The reality was different, if not unexpected. A stranger shows up who you hope won’t pocket your belongings. You pay them (a lot) to sit on their smartphone in a chair (by the hour) while you keep looking at the clock while you’re on your date night. You are checking that clock because if you are so much as a few minutes late getting home, you're going to be “charged for another full hour.” I spied, using the GrannyCam, on the couple of times we did do these “date nights” with paid strangers back at the house. They always were looking at their phones, ignoring my Mom. I’m not even upset by that. I honestly would do exactly that myself! I know I would. I confess it without reservations. I just didn’t feel very intelligent paying someone else to do it “by the hour” - so I could eat a burger and french fries a few miles down the road. So, that was my experience with pay-as-you-go care for Mom. If it sounds like a good option to you (or you want a way to triple (or quadruple) the cost of going to Applebees and a movie), then go for it! We did, I think, three “date nights” total and agreed it wasn’t worth it. It absolutely did NOT feel like a relaxing night out any of the times. I would describe it as feeling too expensive, rushed, and nerve-racking. Also, seriously, who the heck even was this person in our house?
During these adventures in caring for my Mom, my Mother-In-Law also needed to move into a memory care facility. This has given our family yet another first-hand glimpse into the inner workings (and the underbelly) of yet another elder-care facility. Frankly, my Mom-in-law has had lots of problems there. This place is expensive and is supposed to be “one of the best.” I won't go into the details as she is my wife's Mother, not mine. Also, talking about my Mother-in-law's care would add more to this already long post. My point is there is a huge variety of the quality of care available for elderly people out there. Some places are excellent and others terrible.
In my family, having "others" watch our loved ones has been a mixed bag of: “They do such a good job!” to “I can't believe they did that!” or “I can’t believe they didn't do that!” The people working at nursing homes and care facilities mostly mean well. Most have their heart in the right place. We’ve all heard the news stories about downright abuse in some supposed “care facilities,” though. That is what worries me. My own experiences have made me understand how elder abuse probably happens. I see how it could get to that point even as I'm sickened by the thought of it. I see how it could be just too much for some people - especially if this isn't even your family member! Think about this unpleasant scenario: You’re on the clock as a care worker, wiping someone else's bottom while they purposely try to rub poop on you, and all the while, they are also violently YELLING AT YOU as if you've done something wrong. At the end of the day, you can’t pay people enough to care about your parent. It’s just not possible. The workers are human. They are looking at the clock. They want the shift to be over. They have families of their own. Our sick, elderly parents never have a time that they don’t need us. They always need care. They always need love. The things they do can be unpredictable and so frustrating at times. It’s hard enough when it is your own loved one. I can’t fathom the patience a care worker has to have with someone else’s parent being difficult to care for.
My Mom was an excellent writer (and a journalist) before she got sick. Today, I'm doing what Mom always told me to. She told me the old adage: "Always write about what you know." Well, I do know how hard it is to care for someone you love (for so long) that it starts to age you and change you. I also know there is another epidemic in this country that no one talks about much. It's "What do we do with our elderly, sick parent(s)?" Why is it so difficult? What’s the right thing to do? Where is the answer? How do we best care for them? I now know that getting good help with care is a gamble much of the time. I know caring for a parent (or loved one) with dementia will fall mostly onto your own shoulders. Our elderly need so much care and patience. They need love and lots of forbearance. You have to be (or become) the type of person who EXPECTS them to act horribly at times, and be ready to treat them right anyhow. Why? Because it's not even them. It's the disease. The disease takes them and it keeps taking them (little by little) daily. It took my Mom from me. I know a bit more about this subject now so I’m writing about it. Maybe this will help someone else better know (some of) what to expect.
I said earlier that I blamed my Mom. The truth is I blame her Lewy body dementia. That is the villain in Mom’s story - and mine. It’s such a silly-sounding (and stupid) name that at times, I’m tempted to just tell people my Mom has Alzheimer’s. People do ask me what she has from time to time. Alzheimer’s is a common name people have heard of. Saying: “She has Lewy body dementia,” causes people to smile uncomfortably. They seem to think I just attempted to make a joke. “Lewy, what did you say now!?” I think it’s important to educate people about LBD. It (like Alzheimer’s) is named after the person who discovered it. “Friedrich Jacob Heinrich Lewy (1885-1950) discovered Lewy bodies in 1912. Lewy was a German neurologist, psychiatrist, and neuropathologist.” I had never heard of LBD either when Mom got the diagnosis. I’m hoping it does become a more widely understood disease, though. The more people know about it, the more likely a cure can be found someday. That’s my hope anyway.
I googled it when Mom got her diagnosis, and to my surprise, the first link was about Robin Williams the famous actor. Robin Williams was found (post-mortem) to have LBD. It’s what really killed him. It’s what’s killing my Mother slowly. Robin’s widow, Susan Schneider Williams, has raised some awareness about this very common (yet not widely known) disease. She described treating Robin’s symptoms as being like playing “Whack-a-mole.” Her work in promoting LBD awareness culminated with the release (in 2020) of the film called Robin’s Wish. 
Her husband Robin had stomach issues. So did my Mom in her early stages. Robin inexplicably fell into a door at home, injuring his face, and he bled a lot. My Mom fell on our driveway, and the blood flowed from her face to my then very young children’s surprise and horror. My Mom had multiple bad falls in the early stages of her LBD.
Lewy body dementia comes with a whole bag of tragic symptoms. One symptom is vivid hallucinations. Mom had many that, to her, were just matter-of-fact realities. She had no concept that they were not real. She thought “workers” had rearranged her bedroom furniture. She thought my kids had placed a “jar of honeybees” in her closet. She thought she was still working for the Pioneer-Press newspaper and that she needed to “call the mayor to get a quote.” That last one was so ingrained that I actually called her cell phone and told her I was the mayor. I gave her a quote, and she magically became “unstuck” from the spell of her hallucination. She sometimes saw "cute animals" that were not really there. She became paranoid and aggressive at times. The paranoia took the form of my Mom thinking my wife was "stealing" her pots (and dishes) from her. Keep in mind that our kitchen was one we all shared. It made no sense then or now. She went so far as to "hide" one cooking pot inside her shower! I even went out and bought another pot. It seemed to help. She needed to see a Gastroenterologist for stomach issues. I now believe even that was caused by Lewy body dementia. Her most prominent symptom by far is her inability to speak in any way that makes sense anymore.
Mom’s symptoms have morphed a lot over time, and it has indeed been like whack-a-mole. These days, the hallucinations seem to be gone. The paranoia is in the past. She’s just so frail now and speaks only in total gibberish. They call it “word salad” in the eldercare profession. If you talk in an upbeat tone (with a smile) in response to her gibberish, you get a nice smile back. I’m thankful for that. That she can smile still, and she seems to feel happy comforts me some.
I remember when she was still able to really talk to me, though. I miss those days so much. She was my confidant. No problems that I shared with her were insurmountable. She was a fountain of sound advice. She was wise beyond my comprehension at times. At least, that is how I felt. She could help me with any of life's problems. She was a great Mom. She helped me so much, and now that help has been taken away by Lewy body dementia. She loved me so much. So my response is to help her now (as much as I can) and to love her back. I love you Mom! I miss you even though we are stuck on this island together.
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