caregiver

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Until Your Love Runs Out

“With gratitude, optimism is sustainable.”–Michael J. Fox

I heard Fox say that once in a recent interview. It takes effort for his body not to shake or move due to Parkinson’s Disease, yet he’s still grateful for and optimistic about his life. I immediately found a scrap of paper and wrote this quote down because I knew I’d need it at some point. And now here I am, trying my best to embrace those words.

Your comments, messages, emails, texts and phone calls in response to my last post, was the best explosion of love I have felt in quite some time. I am not only grateful for y’all, but finding others that have been or are currently in the same situation, lightened my stress by just a bit. Thank you. So much!

Because of my blog post, my husband and I had some honest conversations, including his daily fears and what the future will bring. We added to our vision board with our own hopes and also YOUR words of encouragement.

When I asked my son what he wanted on the board, he said to win the Calvin Coolidge Scholarship. This is the one he’s been working really hard on–reading Coolidge’s autobiography, writing 3 essays and 3 short answer questions. I helped him with his resume and he got the two letters of recommendation he needed. The deadline is Thursday, so much of his life will be consumed by this for the next few days. He said, “You know, Mom, I really doubt I’ll get it, but I’m really proud of myself for trying.” I’m so damn proud of him, too. He set a goal and he’s kicking ass trying to achieve it. ❤

We’re feeling some hope this weekend. I was able to buy groceries yesterday and filled the house with healthy foods and now I’m cooking up a storm. I paid most of our bills and with a bit of juggling, should be able to pay the others around their due dates. (I know many of you know this juggling I speak of. We’re basically fucking financial experts, aren’t we?) Today my husband looked at bars for the shower and toilets that are higher than what we have. With help from one of my colleagues, I now have a short list of attorneys we may want to talk to soon about the process of applying for disability, but he’s not at that point quite yet. He has to stop working before he’s even able to apply. I really, really hope that isn’t this year.

But if it is, then we’ll deal with it. Because that’s what we do and what you’d do, too.

For today, though, we’re going to move forward and hope we can continue to keep putting one foot in front of the other. We’re going to listen to this positive potato. (My son gave this to me yesterday as my late Christmas present. I LOVE IT!)

So let’s do our thing, friends. I believe in you, just as much as you believe in me. Let’s keep chugging along until the love runs out.

Hugs for all!

Thank you, One Republic, for letting me borrow and edit your lyrics for my blog post title.

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Trying to Look Ahead…and Failing

Hi friends.

I am struggling.

There is no other way to say it.

I am trying to look to the future to give me some positive vibes. I know I have a lot to look forward to this year–a trip to Belize with four of my best girlfriends, touring colleges in Washington, D.C. while also visiting another one of my favorite humans, watching and preparing my son to apply for colleges all around the northeast. This should be an exciting time.

But while I am at home I feel…stuck? Unmotivated? Sad? Living with and loving someone who has a chronic illness and will eventually die from that illness, is incredibly difficult. There is so much anger to go around–from myself, from my son, and sometimes from my husband. Watching my husband shuffle when he walks, take naps every day because he doesn’t have the energy to do much, and come to terms with the fact that there is only so much he can now do to fix his health is heartbreaking–and honestly rage-inducing.

Here’s the thing: I want my husband to try and enjoy whatever life he has left. Hopefully that will still be 8 or 9 years, but at this rate, I doubt that figure. I know that for him, enjoying his life means he’ll watch films he loves, spend time with our little family, listen to a variety of music, and dream about winter camping. Little things bring him contentment. But to enjoy this life, it also means that he’ll eat basically whatever he wants. And in doing so, his diabetes is not under control and his congestive heart failure symptoms have increased.

This is the part that frustrates me to the nth degree.

Living our lives, no matter how we live them, brings consequences to not just ourselves, but those around you.

I am relying on my partner for not only emotional support but for financial support. And with the many days of work missed and a few unpaid hospital bills, it has created a tremendous stressor in our household.

Our son, a junior in high school, has begun applying for scholarships for college. I set him on this path because every school he’s interested in is out of state and all have hefty price tags. But now he’s become obsessed with applying for the big scholarships, the ones with full tuition that are so dang hard to come by. And I know that that is my fault. I honestly do not know how we will help pay for his schooling.

Currently my son’s main goal after college is to make sure he has a job that can pay his bills. He wants to love what he does but right now that does not seem to be his main concern. He has watched us struggle financially his entire life due to bouts of unemployment, short-term disability, or my choice of career that has never paid what I’m worth. And now that he is on the cusp of adulthood, he will do whatever he can to not live that life.

I am frustrated, scared, and just so unsure of what our future is. I tried to start a vision board for this year. I had ideas a few days ago and now I just feel lost. The one thing I wrote on it was about making and feeding my son healthy meals. Do you know why I wrote that? Because he asked me to feed him well so he could concentrate on his studies, work, applying for scholarships, and to start exercising again. 

Recently I was doing laundry and I told him I would do his laundry for him, too. But later that weekend, I fell in some kind of awful dark place. and I didn’t do the laundry. A few days later he called me while I was at work and asked where his work pants were. That’s when I realized they were still in the hamper because I just couldn’t function that weekend. So? I told him the truth. I said I had a depressed episode (I don’t really know what to call it, but that sounded accurate) and I didn’t do the laundry. Do you know what he said? He said, “Ah. Ok, I get it. That’s fair. I will just wear dirty pants to work. Love you, Mom!”

I love this child with every cell of my being.

Just a month ago I would have turned to running to help with all of these feelings. But I just don’t have it in me to do that right now. I did run one day this week and took a walk on a few others, so I’m moving at least. But something has to change.

I am grateful for my work, because that has become my sanctuary. I get to be with people I care about, I get to help others, and I just feel…useful. I feel like I make a difference. I don’t always know what I should do or how to do things correctly, but thankfully I have a team of people who support me and help me find my way.

If you have ever cared for another individual during their sickness and have felt this helpless and sometimes hopeless, I’d love to hear from you. Or if you have some wise words of encouragement, I’ll take those, too.

Thank you, friends.

Hugs to you. ❤

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Hold On Hope

Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.

What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?

What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?

In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”

I’ve discovered that there is indeed a time when I will say these sentences and that time is now.

After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.

Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.

Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.

Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.

I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”

These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.

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Surviving

Today is my 3-year anniversary as the director of a small public library. I’ve worked at the library for over 16 years, but was given the gift of leading the library for the past three years. It’s no secret that I love what I do, and as much as I don’t believe in “things happen for a reason” or “soul mates” or even “destiny,” I think being a rural public librarian is the absolute perfect profession for me. Do I still dream of becoming a writer and actually making a living from it? Of course! But I know my writing isn’t good enough for that to happen, not without a lot more effort and practice and education. Right now, though, my heart is with librarianship.

As I talked to my husband today about everything that’s happened since I became director, I couldn’t help but choke back a sob. How did I make it through it all? Let me give you the timeline:

February 2019: Become director of the library. This was 2 months after my husband had been laid off. He was unemployed when I got this job. It was 18 1/2 months after my brother died. That may not seem relevant, but his life and death impact me in ways most people cannot understand.

March 2019: My funny, sweet, lovely father dies on St. Patrick’s Day.

May 2019: My husband gets a new job. Yes!

June 2019: I break my arm while walking with my son. I break it so badly that a plate and nine screws had to be implanted in my upper arm.

September 2019: My mother becomes ill and I make the choice to place her in hospice care.

October 2019: My loving, supportive, bad-ass mom dies on October 4th. She left this planet five minutes after I left her bedside.

January 2020: After the difficulties of 2019, we decide to plan a fabulous Florida vacation with a cruise.

February 2020: Husband goes into the hospital with pneumonia and the flu, then ends up on a ventilator and in a coma. Both our son and I have the flu, too, and for two weeks we wait. I answer questions from the doctors because they cannot wake him up from the comatose state they put him into. Questions about kidney failure and brain damage are thrown around. Yet on Valentine’s Day, he finally wakes up. ❤

March 2020: While my husband continues to recover at home, I manage pancreatitis at home. I know if I go to the hospital, there won’t be anyone to take care of my husband or son. So I drink fluids, get blood drawn every other day for my doctor to keep tabs on me, and I go to work to keep us all afloat. Then COVID-19 hits the U.S. and I close the library on the evening of March 16th and we cancel our dream vacation.

April 2020: We celebrate our son becoming a teenager with a family party via Zoom. Not quite what we had planned.

May 2020: While working from home, I go for a lunchtime walk and am bitten by the neighbor’s dog. My husband rushes me to the doctor for stitches and to check out all the puncture wounds on my legs. We re-open the library this month for curbside services.

June 2020: We re-open the library doors.

August 2020: I run a half-marathon because I can.

September 2020: I run another half-marathon on Mom’s birthday in memory of her bad-assery.

January/February 2021: I start training for a marathon. Just weeks later I get a stress fracture in my right leg. We watch our beloved cat, Miso, have a seizure and die in front of our eyes as my husband calls the vet and my son and I cry and try to comfort the sweetest cat that ever lived. We all hold him in our arms afterwards and cry until bedtime.

March/April 2021: I start taking walks and short runs again. My sanity is somewhat restored.

June 2021: Our son “graduates” from 8th grade. My husband has a widow maker of a heart attack on June 15th. He only survives because he was near a university medical center.

August 2021: The boy enters high school.

September 2021: Husband goes back to work.

Late October 2021: Husband told by doctor to stop working until he has another heart surgery.

November 2021: Two stents placed in husband’s heart. His energy improves dramatically!

January 2022: I have a procedure on my pancreas to determine if I have cancerous tumors or the possibility of cancer forming on said tumors. Still waiting for the results.

And there you have it. There were MANY activities and emotions not mentioned, and a lot of those were fabulous. I smiled every day, I think. They weren’t all real, but many of them were. I laughed nearly every day. I, like so many of you, juggled lots of other crap we don’t talk about because it’s life—flat tires, sick pets, stress from work and COVID and paying bills and EVERYTHING.

But…I’ve also read over 800 books since I became director. (Many of them middle-school novels.) I’ve written blog posts and poems and reports and letters. I’ve made new friends, some of them being my library patrons. I’ve created new connections at the library, both personally and professionally. I’m trying to lead the library into being the center of the community, and with the amazing support from the Board, the volunteers, and the residents, I think we can do it.

Yes, WE.

If I’ve learned anything from these past three years, it’s that I can’t do my work by myself. I can’t succeed alone. I have an incredible staff, support system and library users that makes the library a wonderful place to be a part of.

But I also know that I would never have survived these three years without my family and friends. Never. I received gift cards and meals when my husband was in the hospital. People sent me cards when my parents died and gave me hugs when I needed them. They were also there to just listen. I have friends all around the country and so many of them reached out in various ways over the past few years. Sometimes just listening is all I needed. And that’s why you reading this blog has also helped me. Tremendously.

So…thank you. I think that’s really all I’m trying to say tonight. Thank you for being in my life. Thank you for supporting me in however you know how. Thanks for being you.

Now go to your local library. They need your support even more these days. And remember, keep reading. It doesn’t matter what it is. I am not a judgy librarian! Read what you want and don’t let anyone tell you otherwise. If they do, tell them your librarian said to screw off. ❤

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Boundaries

The scene at my house this evening, minutes after arriving home from work:

Husband: Hey, hon, do you still have some reusable grocery bags I can leave in my car?

Me: Oh! Yeah, I have some right here. I’ll go put them in your car right now so I don’t forget.

Husband: No, no, you don’t have to do that.

Me: It’s no problem. I have to put these cds in my car anyway. I’ll be right back.

I trot out to our driveway, put things in my car, open his car door to place the bags in his passenger seat. Then I find this on the floor:

I flipped the package over to look at the date. Was this left over from before his heart attack when he was eating loads of junk? “July 9, 2021.” Last Friday.

I slowly walk back into the house with this fried chicken bag pinched between my fingers. My breath is getting heavier with every step. Cue the cartoon steam exhaling from my ears. I walk through the door and put the bag in front of my husband’s face. With a clipped tone I ask, “What the hell. Is. This?”

Husband looks slightly shamefaced but not nearly enough. He’s smiling a little, but that nervous smile he gets when he knows he’s fucked up and got caught. I may have been afraid to yell at him a week ago, worried he’d have another heart attack. I certainly wasn’t scared today. I lit into him. When our son asked what Papa did, I showed him the bag with the fork still in it so he could eat in his car without anyone knowing. The boy just shook his head.

I raged for just a few minutes. Told him that it hadn’t even been 4 weeks since his nearly fatal heart attack. 27 days, in fact. “You couldn’t even go one fucking month without fried, fatty food?!?” I left the room to put my sneakers on so I could take a walk to cool down. But before I left, I stomped back into the living room, pointed my finger at my husband and said, “YOU are not allowed to kill yourself. I am the only one who gets the pleasure of killing you!”

Ok. Not my finest hour, but it felt good. And we both ended up laughing because it was so absurd and sounded exactly like me. Then I still had to leave the house because I was pissed.

But you know what REALLY upsets me about this? The night before he ate that fried chicken, he had a scary episode. He went to bed, but then came back to the living room just a minute later and said he couldn’t lie down. His stomach was bothering him, which was one of the signs he had before his heart attack. So he sat in his recliner, and I asked him if he’d like me to stay with him. He said that he would and took my hand. “Once I start snoring, you can go to bed if you want. I’ll be ok by then.” So I kissed him, turned out the lights, got blankets for us both, and lay on the couch listening to my husband breathe, cough, and sniffle. Eventually he slept deeply and I went to bed. It was a frightening time, yet he trusted and loved me enough to ask me to stay, which I know is a great gift.

And then…he ate the fucking chicken.

As a caregiver, one has to know when to draw the line or when to say, “Ok, big boy, you can make the phone call to your cardiologist to find out when they’re going to look at your other blocked arteries.” (This is something I’ve been asking him to do for a week, and today his nurse told him the exact same thing. Should we take a bet on how long it takes for him to do it now?) Since Wal’s heart attack, my sister and so many of my friends have been telling me to make sure I take care of myself, to take some time for myself. I mostly have. But no one has yet said, “It’s time to stop taking care of him.”

Because we don’t do that, right? We try to squeeze moments out for ourselves which often causes more stress in the long run, but we never say to someone, “Ok, you can give up on that person now.” And why? Because what if that person dies or has a stroke due to their declining health and is bedbound or mute or paralyzed. How would we feel then?

GUILTY.

But…shouldn’t there be a time when we finally say, “I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.” Any person we are taking care of must take some responsibility in their own health if they are able. When I took care of my mother, I understood that she could no longer do this. She could make her own coffee and get dressed, but showering and eating well and taking her medications were no longer in her realm of tasks she could do. And after a few months of working full time and taking care of my son and my mom, I knew that I couldn’t keep caring for her without losing much of myself.

So what do you do when you’re taking care of your spouse or partner? I have a friend who is dealing with this on an even more intense level. I have tried to lend my shoulder and ear to her as much as I can, but I know it’s never enough. She’s given me loads of advice and listens whenever I need her to, but her caregiving tasks are much more serious and frightening. And her spouse is NOT able to care for himself much anymore.

But my husband can. And he needs to. I find his lack of respect for his health infuriating but also incredibly sad and unfair to me. To our son. Does Wal know and understand all of this and everything I’m feeling and what I wish he felt? Yes. He does. And if he doesn’t, he will when I read him this blog post. 😉

The question remains: What do I do now? Do I throw my hands up and say, “Whatever. Do whatever you want”? Or do I say I will help you if you need me to, but I will not make phone calls for you or keep track of your sodium or fluid intake? My therapist and I just had conversations about what kinds of boundaries to set down, and the latter seemed the most appropriate at that time a week ago, but now? Now I’m angry and hurt and not sure what steps to take next.

I’m already tired of being angry. I’m not apathetic because I’m too emotional about this. I think I’m sad, frustrated, and disappointed.

Maybe I just need to find some patience and let him be and hope he finds the path towards good health. He doesn’t need to die trying to look for it because it’s right there in front of him. I’ve been holding out my hand to show him for a long time, but now I guess I just need to go on ahead and hope he catches up. I’ve left breadcrumbs and neon arrows to guide him, so let’s hope he just opens his eyes.

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Caregiving vs. Self-Care

When you’re taking care of someone, it feels much like being their parent. You worry about them more often than not. If they don’t feel well or are having a rough day, you feel like they do. And when they admit their fear about what’s happening to their body and their life, you feel just as frightened.

This weekend has been another rollercoaster ride for my household. Our son had his wisdom teeth out on Friday and yesterday he was just ok, but this morning he was in pain and had been up most of the night. Wal had gained 2 pounds overnight, which is not a good thing when you’re a heart patient. He also didn’t feel very well much of the day. I didn’t feel good when I got up, but I kicked into crisis mode after realizing my son was hurting and my husband wasn’t well. Got the kid on a pain med schedule and my husband already took the medicine he needed to work on the extra fluid in his body. So although I didn’t feel great, I went for a run in the heat and humidity anyway. I needed to physically put one foot in front of the other so I could do it figuratively when back at home.

At one point this afternoon, both my husband and son were napping. It reminded me of the times when my boy was a baby and although they always said to nap when your baby naps, I would always clean. Which is exactly what I did today. I listened to an audiobook and swept and mopped and cleaned bathrooms and did laundry. I get like this. It’s like I’m preparing for the next crisis, so maybe my house will be clean when it arrives and I won’t feel as much stress.

Folks talk about self-care and have really been driving that home to me over the past two weeks. And maybe I should have rested when my family did. But in my own quirky way, cleaning the house was taking care of myself. I love that when I walk on my kitchen floor now, my socks don’t stick to it. 😉

Once my son was awake, he felt a bit better. I gave him some yogurt and he planted himself at his computer desk to play a video game. I checked on my husband, who was still napping, then made myself a margarita at 4 o’clock in the afternoon. Might not be the best choice of things to do, but I curled on the couch with a book and my drink and relaxed for 15 minutes. It was pretty fantastic.

But then I got up and checked on my husband again. He had been sleeping for nearly 2 hours at this point. I watched his chest to make sure he was still breathing—-just like I used to do with my son when he was an infant. Wal started to stir and caught me staring at him. I asked if he was ok and he said yes and wanted to know the time. I told him and he said “ok” and rolled over. I figured he’d get up in a few minutes, so I went to the kitchen and started making a salad. An hour later I went to our bedroom again. I was trying not to freak out. He woke up this time and we both wondered aloud, “Is this ok?” Is taking a long nap alright? Does it mean something besides being tired?

We are stumbling along this path, not fully understanding where to go or what to do. Everything keeps changing. His blood thinner meds have changed every few days because his blood wants to clot and right now that’s not a good thing. We weren’t really sure how much sodium he’s allowed to have until a friend whose husband went through this last year gave me an idea of what the amount should be. And just today I found the answer in his pile of paperwork he came home with. (I thought I had read it all but obviously didn’t take it all in.)

This all still feels…surreal. Exhausting for sure, and unfamiliar yet a bit familiar at the same time, but not enough to actually know what we’re doing.

For now, we’re doing our best to take things one day at a time and one issue at a time. We’re also still trying to enjoy the little things that bring us joy. Whatever they are. I hope you do the same, friends. Live in the moment if you can. ❤

A few nice moments this weekend.

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And then there were four…

My mother always said that when she gets to the point where she needs to be in a home, then that’s what we need to do. She never wanted to live with her children because she never wanted to “burden” us. But now that we’re facing the truth that she needs to be somewhere besides her own home….well, let’s just say that without planning for the future, we can say whatever we want but it doesn’t make it a reality.

I moved Mom in with my family a few weeks ago. She just had a major surgery that would help her circulation and we just couldn’t send her back home. She had stopped taking her medication, even with many reminders. Her diabetes was out of control (will lose several toes next week), she barely ate, and her house was….awful. You have to understand that my mother was always an immaculate housekeeper. Everything was cleaned A LOT. Very little clutter (except the occasional tabletop or closet) and just a really neat house, you know? I realize that when you get older, you can’t do as many things. I get it. But not like this. Food was rotting on the counter. Plants could grow on the carpet. Burnholes in the mattress and clothing. This wasn’t my mom’s house anymore. This wasn’t my mom. And this wasn’t safe.

So, what to do? Assisted living? Nursing home? My house? Honestly, there weren’t many options. At that time, if she didn’t come home with me, she’d go back home. And I couldn’t do that. I felt like that was neglect on my part. Cruel, even. But is it cruel to take her away from her home? Maybe. But the things that have happened at my house since she’s arrived has made me realize how bad her dementia and her physical health really are. Every time I had to go to her house, I was always worried about what I’d find. And don’t get me wrong, there were good days. But so many bad ones.

Is it any better with Mom living with my family? Well…..yes and no. She now takes her meds, she eats, she changes her clothes every day, she washes up and she showers. Most of those things were not happening at her home. Is she happy? I’m not sure. Was she happy before? I don’t know. I really don’t.

And what about my family? Lots of changes. Difficult some days, but we laugh as much as we can. My husband has been an absolute saint through all of this. He’s been so supportive and helpful. My son is doing well, although we have had many discussions about what we don’t like about our current situation and what we do like. He loves his grandmother with everything he has, but it’s still difficult when you lose your bathroom and Grammie acts odd sometimes. Both my husband and I try to carve out one-on-one time to spend with him. We always spent time with him before, but now it’s even more vital.

And me? Well, I finally start counseling next week so maybe that will help? I’m definitely feeling more stressed than ever before, feeling pulled in so many directions. I ended up crying on the phone to the hospital when they changed my mother’s appointments after I had completely rearranged my life so I could get her there. The woman on the phone was unbelievably sweet but I can just imagine what she thought.

I often think about my brother and wonder what he would think of all this. I miss being able to talk with him and vent. My sister has been as good of a help as she can be, but Phil would help us find he humor in all of this. I’m trying to do that.  Like guessing which cupboard my  mother will put the peanut butter in. Yesterday was the refrigerator so I got that one wrong! And at least now there are as many humans in the house as there are cats!

alzheimers-nurse-humor

We are working on a plan for when Mom’s health changes. But that takes time. I’ve already waded through piles of paperwork, nurse and social worker visits, and there’s still more to be done. Do I want my mom to stay with us? Yes. Most days. I love her and I’m really trying to do what’s best for her. But I also know that I need to have boundaries. My family needs those boundaries. When Mom’s mental and/or physical health gets to a certain point, then another move will have to happen. In the end, I know I need to do what’s best for me and my family. I just hope I’ll know what that is when the time comes.

 

 

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That First Step

I’ve always said that blogging has been my own source of therapy. I write about my issues, get everything out of my heart and head and typically I feel better. I often get feedback from my readers, many of them being my friends, and usually I feel like my head is clearer, my body a little lighter and I’m not as alone as I thought I was.

But now….now I think blogging might not be enough.

As I’m writing this post, my brother has been gone for 11 weeks, 5 hours and 11 minutes. I think I hurt more now than I did that day. Everything was fresh and raw and horribly painful that day, but now I feel empty. Hollowed out. Lost.

For the past few weeks, I’ve known that I should seek out counseling. The combined stress of trying to care for my mother and dealing with my grief has been overwhelming.  One morning when my boss encouraged me to give the counseling program a call, I broke down in tears and told her I just couldn’t. My mom’s health has deteriorated very quickly in the past few months and I’m taking her to one doctor or another each week, sometimes twice a week. The thought of adding something new to my schedule broke me.

Then my best friend started nudging me, trying to get me to make that call. I put it off for another week then finally made the first call. This was just to set me up and give me a list of counselors I can call and try to meet with. My stomach hurt the entire time and I willed my voice not to shake. After the call ended, I put my head down on the table and cried. If it’s this difficult just to get a list of names, how the hell will I be at an actual session?

Now that I have my list, I still haven’t been able to call anyone. In fact, two days after getting the list I thought, “Ok. This is good to have, but I’m really fine. I can handle this.” I spent the afternoon cleaning my mother’s home, having lunch with her and taking her to the store. Sometimes when I spend time with Mom, I miss her. I miss the person she used to be. I felt like that this week, but I also tried to make the best of the situation. We chatted about food, my son, our cats and how beautiful the leaves were looking. “I can do this, ” I thought.

And then I spent the evening with my son. We’ve been watching The Flas71289d196e3604c520bb1fdd7bf20310h on Netflix. So, if you haven’t been watching season 3 of The Flash and intend to, skip this part now. *SPOILER ALERT*  In this episode, Cisco, one of my favorite characters because he makes being a geek look so damn cool, has been seeing visions of his dead brother, Dante. Cisco gets his hands on an artifact that messes with his mind and he eventually must seal the artifact away. But in doing so, he will never see his brother again. His rational mind knows that this image isn’t really his brother, but it doesn’t make the task any easier. So he has to choose–see his brother again or lose his brother forever but save his friends’ lives.

As Cisco makes his choice, I cover my face and sob into my hands. My son asks me what’s wrong, but I can’t answer. I’m sobbing so hard that it’s difficult to breathe, much less talk. My sweet boy then slides closer to me on the couch and hugs me. I end up crying on his shoulder, literally. I finally pull myself together after a minute and let my boy go. All he says is, “Uncle?” I nod. I apologize to him, but he said that it was ok. Then he takes off his shirt and says, “Here, Mom. You can just use this as a tissue.”

I love that kid so much.

So…after that little breakdown, all from a damn tv show no less, I think I might be able to make that phone call. Or I know I should.

I know I have to at least try. That’s all I can promise myself right now. But it’s a start.

 

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Lost and Found

If I’ve learned anything this past week, it’s that Alzheimer’s Disease slowly eats away one’s independence, dignity, eventually humanity. It not only destroys the individual, but it injurs and scars the caregiver and the family.

Last week ended with me losing my mother in a hospital (she can seriously boogie with that walker!) and also discovering at least 6 months worth of unopened mail in her home, including financial matters that should have been tended to. And this week began with me visiting the bank and crying at the desk of a bank employee.

Today I told more people about my mother’s condition. I told people that may only be on the periphery of her life, but ones that need to know why she doesn’t seem like her typical reliable self. My mother’s reputation has been in jeopardy for the past year, and maybe that doesn’t matter to some. But I know if my mother was in her right mind, it would matter to her. She’s been a respected citizen of our little town for nearly 50 years. She’s always been responsible. She paid her bills on time, mostly obeyed the speed limit and every single person I talk to says, “She’s such a sweet woman!” I don’t want anyone thinking less of her because I didn’t pay attention to that growing pile of mail in her living room. If I had done my job, I would have helped her open that shit at least two months ago.

mailBut I didn’t. I didn’t want to. I was afraid. In the back of my mind, I knew my own responsibilities for Mom’s care would increase. I knew I would have to have uncomfortable conversations with Mom about finances–her last bit of true freedom. So I didn’t do anything. I didn’t do anything until….well….until I did.  I had to stop putting it off and just ask Mom if we could organize her mail a bit. But something so simple is still not easy for me to do. To this day, I still dread the thought of my mother being angry with me. She put fear in all her children, and although I can’t speak for my siblings, she put the fear of disappointing her, in me.

So now when I need to ask my mother permission to do something, like open her mail, I’m waiting for my mother to bite back, to tell me “no” and that she has everything under control. But she never says that. Not anymore. She knows she no longer has everything under control.  And as much as it pains me to say it, I guess that’s my job now.

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Just Awful

Yesterday morning, as I sobbed and hiccupped on my couch, I told my husband I was a horrible caregiver. “I’m too selfish to do this,” I cried.

Just when I think things are ok, they’re really not.

My mother has Type 2 Diabetes, and before she had dementia, it wasn’t a huge problem. She didn’t eat very well, but she took her medication and it was manageable. Then we realized that she hadn’t been taking any medication for nearly 5 months, things were bad. So my caregiving duties were upped a bit and I started religiously visiting my mother at least once a week to fill her pill container and to chat and just see her. Yet in the past month, the situation started to decline. Mom just hasn’t been taking her medication. Maybe twice a week, but that’s all. I don’t know why, but something changed. The first week it happened, I hoped it was just a bad week. And the next week she did take all of her meds, so I thought indeed it had been a snafu. But then for the next 3 weeks, she only sporadically took everything she needed to. And only once did I say, “Mom, you really need to take your medicine, ok?” But why? Why did I only ask her once? Because although I am 43 years old, I still don’t want my mother mad at me.

I am very rarely the recipient of my mother’s wrath. My sister has been the unfortunate one in that scenario and it can be awful. You can practically eat the silence that invades the room when she’s angry. It’s thick and dark like molasses. Or the look she gives you. Christ, a person could burst into flames if they get that look.

But I mean, really, who wants their mother mad at them? No matter what age? But….I know I need to ask my mother if she’s taken her pills…and I need to ask every day….which, in my opinion, is completely awful.

This all came up at Mom’s doctor’s appointment a few days ago. Her glucose levels were off the charts and Mom’s healthcare provider asked my mother if it was ok if I asked her to take her pills. “I know you care about me. I know why that’s the reason you’re asking, so it’s ok,” Mom said. So that’s what I’ll do.

And then I get a late night phone call from the on-call doctor at Mom’s doctor’s office. He tells me Mom’s glucose levels are in fact over 600 and she should go to the ER and get insulin. So…here I am, 35 minutes from where my mother lives. I know that if I call her and wake her up, she’ll be confused and probably hang up on me. If she’s still awake, more than likely she will refuse to go anywhere because it’s late at night and she’s not going to wake her friend and have him take her. So…I don’t call my mother. I wait until the next morning and explain the situation. She says she’ll go to the ER. She then calls me back 10 minutes later, asking what she’s supposed to do at the hospital, what to say, what will they do. Then calls back one more time to say she’s leaving for the ER, but says, “But I’m not staying!” I reassure her that they’ll probably only give her an IV for fluids and some insulin then she can go back home. Which is what they did. They brought her levels down significantly and she’s ok.

But I burst into tears after that last phone call. The self-doubt and guilt completely overwhelmed me. Should I have called her the night before? I could have driven over there and taken her, right? Why didn’t I at least give her the option the night before? I want to say it’s because I knew she wouldn’t go. But I don’t really know that, do I? I was tired, I was on my way to bed, and I didn’t want to deal with one more thing.

Do other caregivers go through this? Do they do stupid, awful things and continuously wonder what the hell they’re doing? This is so much like being a parent, but not. I feel like I have the same amount of responsibility as with my child, but yet more urgency and less power. I am still my mother’s child. I don’t want to make her angry or upset and yet I don’t want to fail her, either. And if I don’t step up my game, I think I’m going to do just that.