elder care – Page 2 – Mother of All Things

frustrated and no wine

I am so not in a good mood these days. Sometimes it’s too much. I realize I don’t work in a factory for pennies and we aren’t homeless or destitute or all those other terrible things. I’m trying to practice gratitude. But oh my gosh. I jinxed myself with that blog post about how wonderful my three-year-old is. She has morphed into a full-time whiner the past few days, demanding and whining and crying and being really impossible.

Part of the problem is the weather. I’m frustrated to the point of tears that it’s freezing cold and raining. Once again, after 6 months of being stuck inside, we are stuck inside! It’s enough to make you go insane.

Here’s some more whining for ya (gee, wonder where my daughter gets it):

My raised beds aren’t done yet. The dirt isn’t delivered. Why? Because it’s freezing and pouring rain (so technically not freezing, but at this point I’d take snow over cold mud).
I have an infection. Somewhere I’d rather not speak of pubicly.
My daughter won’t stop begging me for candy. I came home from work late (9:30pm) and she was wide awake, not in pajamas, watching cartoons and eating fruit snacks. My mom is so not even bothering anymore. It’s easier for her to let M run the show than it is to fight with her about the rules.
Also… so sick of kids youtube and the freakin’ surprise egg/kinder egg/opening presents videos. I’m so close to deleting it except it’s the only way to get a rest in in the afternoon.
I’m broke. I’m doing way better on spending but the bottom line is that I’m spending $390-$474 per pay period week, per 2 weeks, on childcare now that my mom is too tired/overwhelmed to watch her a lot. So our dock still isn’t in, our boat isn’t in, I no longer get morning coffee or whatever going to work, and don’t ask me how I’ll afford to get any of the gardening going. My poor neighbors will be dealing with a nasty looking yard and lakefront.
Speaking of broke… no more cleaning people coming. It’s too much money. (They charged $80 per cleaning.) I can’t find anyone to do it for $50 a week. I’m back to cleaning the house, and it’s beyond irritating. My cats poop on the floor, and throw up, all the time. They are old but ugh. Also there was a mouse, a real mouse, because my mom and daughter have crumbs everywhere all the time. I feel like a cleaning lady in my own home and I’m back to wanting to just leave every day, all day.
I’m tired. I’m so tired it’s all I can do to stay awake sometimes. It becomes impossible to be patient with my daughter, or grandma. I’d ask my doctor to see what’s wrong with me but, oh wait, they did that 3x already and the answer is nothing.
Speaking of daughter and grandma, I took them both to look at an assisted living facility today and it was exactly like having two three-year-olds. They ate through the entire container of snacks I brought in 5 minutes and complained they were hungry every ten minutes thereafter, they fought over what we got for lunch and ate my share, too. I guess I’m just a chauffeur, nanny, mortgage-payer, grocery buyer, cleaning lady to everyone. It’s easy to forgive the three year old for that, a little harder with everyone else.

I’m venting and whining here, but sometimes I truly feel unhealthy, mentally. I feel like I do nothing but clean up after, feed, look in on, and nag everyone around me. I feel like a prisoner in my life a lot of the time. A prisoner who would like to stay in bed for 48 hours straight, waking only to stuff my face with cinnamon rolls and red wine.

And if you are going to leave a comment saying “Take care of yourself, do something for you!” I get it, but unless someone is going to babysit, work, or clean my house for me, that isn’t an option.

done. just done.

Getting old sucks. Especially if you are immobile and in pain all the time, and starting to lose your memory. You basically are just sitting around all day, suffering, completely dependent on others. That’s my grandma. I feel for her and hate that that is what her life has become. I moved closer to her, I tried to manage the caregivers, I tried to do everything I can do. But now it’s to the point where I am done. I want to visit my grandma but she seems to hold me responsible for all of her woes. She accuses me of never visiting (I’m there four days a week, the days I don’t work, for hours). She is lonely and thinks no one cares about her.

The caregivers… ugh there’s always some problem. Right now we have big problems and I just can’t do it anymore. I can’t manage a group of employees especially when there is always some trouble. My grandma won’t pay more than $10/hour though, so it’s no surprise to me that at least one of them always seems to be making trouble! It’s totally beyond my capacity to deal with it anymore in any regular way.

I just talked to my uncle. I’m like, listen, either it all goes to hell in a hand basket or she goes to a home. We kept her home 7 years, 5 of those with nearly full-time caregivers. I have nothing left in me, especially when it is such a thankless task. She can no longer pay her bills or keep track of the times and days of the employees. She can’t manage appointments or making grocery lists and budgeting. I can’t do more than I’m doing so all of this summer how needs to be taken care of. The cost of 24/7 care is the same as a nursing home. So that’s the way it is, I guess.

I feel resigned and defeated over this. But she has 3 kids, and I just want to hand this over to them sometimes.

I hope M puts me in a decent home and never goes through this with me! Visit me on weekends, or holidays, and live your life, kid.

coming apart

I thought I was on the upswing, but other than my literary romance with killer whales, I’d have to say my stress levels have gone nowhere but up. Today my grandmother wanted to go to the orthopedic surgeon because, according to her and the caregiver, the primary did an xray and said it was broken. I drive her an hour to get there, they re-xray it, and it was NOT broken. Turns out the original radiologist only said they couldn’t rule out a fracture. It’s arthritis. Just like the original primary (who I picked out) had said, and who my grandma hated because she was trying to treat her palliatively. My grandma doesn’t want palliative care, even though she’s 86 with severe arthritis and degenerative disk disease and there’s nothing we can do. But god forbid anyone do the reasonable thing and try to give her quality of life.

That wasn’t even what I came here to rant about. The caregiver I mentioned was also entrusted to pick up M from school and bring her back, as there was a chance I wouldn’t be there in time. Entrusted is the key word, here. We got out earlier, however, and something told me I should go to the school at the pick-up time. I thought maybe my intuition was telling me that she’d be late. It was worse than that. I got there and she was already there, and said, “I don’t have a carseat with me.” Mind you, I am a text message away. She didn’t feel it necessary to tell me this until she was surprised by my showing up? She was, apparently, going to put M in the car without a car seat and drive her 30 minutes home on a freeway. I am livid. We sat in the parking lot for an hour while she went to my house to get a car seat. Needless to say, she won’t ever be entrusted with my child again, even at home. Her judgment is obviously way, way, way off.

And when I finally do get home (after pulling M out of her swimming lesson because she was behaving terribly and refusing to follow the pool rules), the house is trashed, as usual. When I work 12 hours, no one picks up after themselves or my three-year-old, and there is food and cat puke and poop often all over the floor, dishes with food encrusted on them in the sink or on the counter, and today there was dried play doh on the floor. My child has eaten junk and is not in bed at 9pm when I finally get home. She is wound up, waking all night and up for the day at 4 am, which of course equals very poor behavior the next day (my day off). Basically, this is not working. I’m overwhelmed and anxious and have no way to clean up, be a good parent, get enough sleep, or maintain my sanity. Taking my grandma anywhere is out of the question, although I don’t mind too much because I’m sick of her pursuing non-viable treatments just because she feels that’s the only way to maintain control over her life. I have no solution for her but I’m not putting my kid’s life in jeopardy in order for her to visit every specialist in the state.

Universe, send me an answer.

we see death coming

Wednesday I told my grandpa I loved him, and he struggled to put words together, but managed to say he loved me, too. Those are likely the last words I’ll ever hear him say. Today he is gaunt, twitching, unable to speak, and his breathing is raspy and rattling. His eyes open but he no longer looks at us.

I turned Lawrence Well music on for him (his favorite when I was a teen living with him, much to my disdain at the time), I check his back side for bed sores (all good, thankfully), and I tell him I love him several more times. My daughter is distraught that I won’t let her lie down on the bed with him the way she’s done ever since she could climb up there and chirp “Wake up, wake up Bapa!” He always loved it but now he winces when he’s touched and even when she makes loud noises. I hold her up to kiss his cheek and she kisses his hand and arm, too. “Bapa’s sick,” she says to me later, in bed. “He needs to go to the doctor and get a check-up.” I try to explain that Bapa is going away. She can’t play with him anymore. She can’t snuggle with him anymore. She just runs back to his bed and implores, “Bapa, get up! I have a balloon! Wanna play with me?”

Now I understand why some family members don’t want to stay with the patient. I thought it was denial and immaturity… Maybe even a bit of callousness. Now I find that I, too, don’t want to see someone I love this way. Dying. Fading out, not in a dignified manner at all, but in a slow and wilting way that seems messy and jerky and awkward. I just don’t want the images of my grandpa like this in my mind. It is a slow unfolding nightmare come to life. It is my first time watching death steal someone I love.

preparing for the future

So far, so good at home. My grandpa is comfortable and happy, sleeping most of the time, at home. M loves to help take care of him, and will empty his NG suction cannister for me (it grosses the caregivers out, my girl has the stomach of a nurse!) and can even hook his NG up to suction! I lift her over the rail so she can kiss him, but for hugs she is a little too rough, so she hugs a teddy bear who then hugs grandpa for her. My grandmother visited the ER with chest pain, but she came home the same day. False alarm.

We’ve also had visits from the funeral home to get everything in place. All of this feels like play-acting, to me. My grandpa sleeps in his room, like always, and nothing feels like it’s really going to happen.

I know that it will happen, however, and I’m getting ready for the day I cut the cord with living in the boonies and working at the same place, take my daughter and become a full-time nomad. I’ve been re-doing all of my nursing certifications to get them current (most travel nurses are required to have several certifications), as well as preparing to join the float pool for experience in other types of ICUs. I’m also going to go ahead and get my nursing license by endorsement in my top destinations: Alaska and the Virgin Islands. I want to be able to GO and also make myself very marketable when the opportunity comes. Anchorage or St. Thomas will be our first “new” home, because I always say go big or go home!

M is super excited for her birthday. She talks constantly about her “Arlo cake”. The dye-free sprinkles arrived, along with the Arlo figurine that will go on the cake, the organic dye-free frosting, and Arlo themed paper plates. It’s all about the Arlo cake, for her, and “getting bigger”. I’ve done e-vites for our little party at the YMCA, which includes swimming, and I think it will be really fun!

M (holding the package that contained the sprinkles and stuff): “I’m going to open it with scissors. And a knife! And a fork!”

the beginning of the end

Seems like a dramatic title, but that’s what this week has felt like to me.

*long story ahead*

There is one place during my first 17 years of life that was safe, where nothing terrible ever happened to me. That was at my grandparents’ house. My mother and I would come up every weekend when I was small, and I would often be left there when my mom worked night shifts. At seven, we moved out here to the middle of nowhere to be close to my grandparents. We spent countless days, especially in the summer, at “grandma’s”. We had overnights, we had our holidays there, and we were happiest there. There was no fighting, no swearing, and certainly none of the abuse that occurred in other places. Most importantly, I was the first grandchild (and the only local one) so I was sort of the “princess” there. It was my carefree place, and my grandparents were my protectors.

My grandma payed for and shuttled me to up to five music lessons a week and karate twice a week, and along with my mom, my grandparents attended every concert, recital, game, and other type of event I had. My grandpa bought me a keyboard and spent hours making up little ditties on it with me, or later, listening to me practice. He taught me to wiggle my nose, and wiggle my ears. My grandparents took me on road trips all over the US and Canada, and on my first trip overseas for a month in the UK and Ireland. At 14 I moved in with them (my mother did, too, eventually) and they kept the rest of the world out for us, so that we could heal and recover and move on to better lives. They gave their time, money, home, and energy tirelessly, helping out all of us when we were in trouble, but especially my mom and even more especially me. They paid for my car and my gas and my books in college. They visited me when I moved to another state (very temporarily). They helped fund my first trip to Nepal and didn’t even try to talk me out of it.

Over the last 10 years, since I’ve become an official “adult”, they began to decline. By 2009, I had moved back home so that they would have someone close by. They had a “helper” who came twice a week for four hours, to do the more exhausting types of cleaning, like laundry, food prep, floor cleaning, etc. Soon my grandma was too frail to drive, and the same lady began driving her to appointments. My grandpa’s Alzheimer’s progressed to the point where he began to wander, and he also began having falls (due to a bad heart valve). It became obvious that we needed more care, and we started hiring people to stay during the day. As my grandparents became unable to do any household chores, prepare their own food, or dress or bathe without assistance, we were hiring caregivers for all three shifts to cover their care 24/7. If they called in, my mom filled in. If one had an appointment, one of us filled in to help the other. In this way, we avoided putting them into a nursing home.

***

I have always known that I’d lose my grandparents someday. They are now in their mid-80s and in poor health, completely dependent upon caregivers for everything. I knew this year that we were getting close, but still it seemed unreal. I have never lived a day in this world without the protection and love of both of them. I have never known a place called “home” that didn’t include them.

My grandma was hospitalized twice over the holidays but came home the same each time. She has always been frailer in health than my grandpa. And yet, his mind is far gone, and all he knows now are things from the distant past, especially his wife. He has told her many times that he couldn’t live without her. “Please don’t die before me,” he would plead. I dreaded the day when she was gone and he would ask for her every two minutes.

Now it seems that that day will never come. Last week he began vomiting and his belly swelled up. He has a bowel obstruction that cannot be fixed without surgery. So it was with a heavy heart but with conviction that he would not survive surgery or its complications, that we chose today to bring in home with hospice. He is less with us than ever before, requires an NG tube to keep his distention down (for comfort), but otherwise he is cheerful, easygoing, and as pleasant as can be when he’s awake. He doesn’t ask for food or water, he doesn’t ask for anything. He just makes little jokes or mutters about random things. In his sleep he moves his hands as if he’s driving, or petting a cat, or whatever.

My grandma, on the other hand, is a hot mess. The stress makes her very irritable, demanding, and sometimes mean. She wants to tell the doctors long, rambling stories that have almost nothing to do with anything and starts yelling at all of us to, “listen to me!” Oy. She wasn’t keen on him coming home, as she felt like she wouldn’t get any care herself. And she keeps calling me asking why grandpa can’t have an IV.

It’s sad. She says to me, “So there’s no chance, then.”
“No.” I answer. “He can’t be fixed without surgery, and we know the surgery will do him in.”

So here we are, scrambling to find someone to sit with him in the hospital until he comes home tomorrow, as well as to care for grandma. Oh and we have to move a ton of furniture around to accommodate the equipment coming in the morning. There aren’t enough bodies or hands.

And after long last, we have reached the beginning of the end. I will never be ready, no matter how long it takes. I love my grandpa very much, and I’m happy for him that he won’t have to live in a world without his wife, which is exactly what he wanted. I’m happy that he won’t die with tubes down his throat and everywhere else, miserable and confused and lost. He’ll be at home, with people who love him, comfortable and at peace. We should all be so lucky.

As much as I love my grandpa, I love my grandma more. She drives me batty these days, but her existence is as intertwined with my identity as that of my mother’s. I simply don’t know who I am without her. Life as I know it and my self as I know it is all about to change.

Not on Christmas eve!

Our visit with bio grandpa went well. M loved her present and really warmed up to him. They have a grandson who lives there and M loved playing with him, too. I tried to get a few more stories about her birth mom. Randomly, her step-grandma’s daughter’s boyfriend, who lives upstairs, knew where M’s dad’s family is from in Mexico. He couldn’t spell it but I’m going to scour the map for it as soon as I can. It’s strange to still not know his real name but I’ll take any info I can get.

Sadly, a lot of what I learn about bio mom, especially during her pregnancy and five weeks before M came to me, is hard to hear. M’s relatives live in the same county, and yet we are world’s apart, culturally. The houses, ramshackle and grimy on the inside, the lifestyles riddled with drug use and prison, the children, born to so many different combinations of people, yelled at and swatted constantly. It’s hard to imagine my daughter growing up in it, and it’s easier and easier to understand how much her life has already diverged from its original path.

I don’t mean to say that these aren’t nice people, they are. They are well intentioned, friendly, generous, and love M as one of their own, which she is. I remain grateful that we are bridging the gaps between us for the sake of the little girl we all love.

We were planning to stop by her aunt’s house (who is in a lot of trouble these days) but I got a call that my grandma wants to go to the ER. If she wants to go on Christmas eve, she must really need to go, because she’s never allowed us to take her near a holiday. It’s literally the worst timing ever, being the first Christmas that M is really excited about, but here we are at the hospital.

At least we made Christmas cookies this morning, I got her desk finished, her castle is all in one piece, and the presents are wrapped. We’re going to do Christmas morning one way or another.

details, details, details… the tribulations of being a DPOA

I have a lengthy questionnaire about assets to complete on behalf of my grandmother. I really hate financial stuff. I find it mind-numbing and a most detestable chore, scouring through someone’s bills and records and policies. Once someone gets to be in their mid-eighties, there’s like enough to keep you busy for a year! I usually have to have my mom entertain M or keep her at my house while I go through things with my grandma, as M demands constant surveillance and attention in a house crammed to the gills with “important” papers, knick-knacks, and odds and ends.

Then there’s the caregivers to manage. Someone is sick, someone comes to work but doesn’t do anything due to an injury, someone gives their hours to someone else who didn’t want them… etc. I have to go over the hours for the week and make sure no one was paid too much (they would definitely tell me if they weren’t paid enough!). Today I filed a complaint with APS about the former caregiver who was exploiting my grandma and stealing. The police investigation was ongoing but now APS will at least have something filed. There’s nothing they can actually do, but they are going to check-in with my grandma and me from time to time, and keep pressure on the police to take care of the investigation in a timely manner.

Doesn’t this all sound like fun??? I may be going through this a few decades before most people my age, but from all of my reading, it comes for most of us in the end. Someone has to take over for you if you live long enough to get a bit senile or need services, and unless there’s a document stating otherwise, it’s going to be the kids. (Or grandkids.) Just another check mark in the ‘pro’ list for having at least two kids. You just never know who the responsible one is going to be!

the rigamaroll of caregivers

Hiring and firing caregivers for my grandparents (who live next door) is a full-time and exhausting job. There is never a shortage of drama, and always an abundance of call-ins, bickering between the staff, and general angst. Most of the employees I’ve fired work for a few weeks or a month or so before they’re let go. This last time, it was an employee who has been with us almost two years, and it was a doozy. It is especially difficult to navigate these waters when my grandma is so dependent and attached to her caregivers. She wants to forgive them for anything, because it is hard for her to always have new people helping her with private things. I get that, but certain behaviors can’t be ignored.

I’m starting to understand why the elderly end up in nursing homes. Caring for them is a full time job, and as a mom and full-time nurse myself, I can’t do it. In fact, no one can do a full-time job 24/7, except maybe parenting. I feel like if the money is there, you can hire 24/7 caregivers to keep people home as long as possible, but then there is this problem: caregivers are not paid a huge amount, most of them don’t have much education, and their commitment to the job is “meh”. We have several who are good but one is leaving and one wants to drop hours so we have to hire again. The one who was just fired worked day shift 6 days per week. I hate the hiring process. I feel nothing but trepidation for what we might end up with.

So far the “bad ones” have been like this: coming to work on drugs, stealing, taking large gifts of money claiming to be “borrowing” them, offering to do jobs and not showing up do them, asking for raises and fudging their hours to appear to have worked more, calling in all the time. So much ridiculous-ness!

a little meltdown

The other night I had a bit of a meltdown. There were tears. I had a paper due, tests and quizzes, and lots of stress about finding clinical preceptors for next year. I came home to my cottage to find it a total mess (stinking garbage, sticky spills on the floor, dirty kitty litter, cat puke on floor, rust/iron coating on sinks and tub, gross toilet), and the yard trashed with insulation, broken wood, a crushed garden bed liner, and even pop cans. And to make it even worse… in the spring my yard and drive is just a huge, calf-deep mud pit. A mud pit I have to pick my way through with a 32 pound wiggling toddler in my arms.

My mom is on vacation in Hawaii, our main day shift caregiver for my grandparents is off on medical, and our afternoon caregiver called in. So I had to also get them dinner and ready for bed while keeping my toddler out of the piles of stuff that is everywhere in their house. I started thinking about my lack of money, and how I can’t pick up overtime at work because I’m already feeling like a bad mom because of how much I have to do for school. And by the time all of this school work, cleaning, and being a mom is taken care of, I have even less time and energy for being a good girlfriend.

And so last night I just started bawling because I felt like a shitty mom, girlfriend, granddaughter, etc and you name it. And have I mentioned that I really, really don’t like mud??? It just sets me over the edge, mud everywhere. I went out and bought knee high rubber boots so that I can stop freaking out about stepping in the mud. But I’m still freaked out about it. I know we have to have the mud to get rid of the snow and ice. But still, ew.

So I had a good cry, turned on survivor, and took my tests. The next day, I submitted my paper, cleaned the floors and toilet and part of the bathroom in the cottage, and got supplies to clean the tub and windows. I got all the kitty litter and puke cleaned up and some of the yard, my kid took a good nap and stayed out of the mud, so I was feeling a little better about life.

But I have been having moments recently, lying in bed next to my daughter, where I wonder what the hell I’m doing going to school. I feel like I miss too much time with her already, working three days a week. What on earth will I do when I have to work another two days a week at clinical sites, and still have classes? Why didn’t I wait til she was in kindergarten or whatever to start this? Should I postpone it? But I feel like that’s a bad idea. I’m already going now… might as well finish it. Then I’ll be done by the time she’s in preschool and have a 9-5 M-F schedule when she’s in school, so I can be there after school with her every day. I just don’t know how to get through this next year without losing my sanity.