‘I Can’t Do This Anymore’: Being a Caregiver Broke Me, But So Did Memory Care

By L. Glitz | December 21st, 2018

Placing your dementia person in memory care is a tough decision to make. Some caregivers are lucky enough to have had this conversation with their care partner before dementia requires them to consider it. Our family did not.

Placing your dementia person in memory care is a tough decision to make. Some caregivers are lucky enough to have had this conversation with their care partner before dementia requires them to consider it. Our family did not—mostly because it was decided by our parents that Dad would be the full-time caregiver when Mom was diagnosed with vascular dementia, aided by my sister and I, until her death. We never questioned it, but we should have: Dad died of pancreatic cancer suddenly two years ago. We have been punching dementia in the face 24/7 (and taking our own beatings) ever since.

After Dad died suddenly of pancreatic cancer, my sister and I became my mother’s primary caregivers. Image courtesy L. Glitz

As anyone who’s been a dementia care partner for any length of time can tell you, there’s a long list of dementia wounds: forgotten birthdays, forgotten relations, forgotten names, etc. Mom lost our names well before we took over as her primary caregivers; my sister and I had become Girl (whoever was standing in front of her), and The Other Girl (whoever wasn’t present). We decided early on not to sweat these little losses—with dementia there’s always worse coming your way. Personal devastation was a hindrance to developing the caregiving dexterity we needed to support Mom. And as we grew in our new roles, The Other Girl and I found ourselves a caregiving force to be reckoned with.

Girl, The Other Girl, and Mom. Image courtesy L. Glitz

However, this summer dementia’s progression finally wore me down. I was unable to muster increased care partner patience, kindness, or compassion as Mom marched steadily into incontinence territory, as her confusion soared to mountainous heights, as the toxicity of her anxiety barreled past its previous borders, gnashing and smashing my hitherto caregiving prowess to bits. “I can’t do this anymore,” I sputtered to my sister one wine-laden night, through tears bitter with the sting of failure. The Other Girl comforted me and added that she too felt it was time to change the situation. So, we did. We decided to move Mom to memory care. And so, it begins …

Memory Care: Week 1 – Good Vibrations

We do the entire move and room set-up while Mom is at her intergenerational daycare. The delivery to her new home goes off without tears, at least for Mom. When I call and speak to her that night, I’m drunk and choking back tears. She, however, is calm, gentle, and sleepy. Mom spent her first week mingling in the common areas, did not question her surroundings, and did not ask for us. The transition was no transition at all for her! I am both thrilled at her newfound serenity, and a little miffed that it seemed so easy for her while I spend that first week working through gut-wrenching bouts of sorrow, a pathetic mess of, “Well, jeez, if I’m no longer Mom’s caregiver, then who the hell am I?”

Memory Care: Week 2 – Ball of Confusion

In week two it becomes clear that The Other Girl and I are having vastly different experiences when visiting Mom. I’m spending my days with a smiling, giggling, anxiety-minimal Mom, seemingly at peace with the massive shift in her life. My sister, however, is treated to a despondent Mom, resistant to activities, refusing to enter the facility when they would return from outings and exhibiting a pronounced degree of confusion. When we compare notes of our week with Mom, the differences are stark and baffling.

Memory Care: Week 3 – The Kids Are Not Alright

When I walked in on Monday during the third week, residents were already seated, waiting to be served lunch. Mom, however, was hovering behind a seated resident. As I approached with a big smile and a “Hello, beautiful!” I didn’t even register to her. She was bending down over the woman, aggressively trying to get a hold of her shoe. “Mom? Mom?” I queried, but was unable to attract her attention.

I tried again, attempting to take her hand. “No!” she said, at each of my attempts.

The woman whose shoe was being molested looked confused, but not particularly alarmed—perhaps she found nothing odd about someone combatively admiring her shoes. However, one of the normally gentle residents was upset, yelling at Mom while shaking her finger in front of her unseeing face. It was only when I said her name—a sharp “Gloria!”—that I was able to lead Mom out of the fray she’d created, towards her room. She was still resisting all attempts to be touched/reached in any way. Her blank eyes reflected a look that told me reality was not what she was perceiving.

I’m shaken. So, this is what The Other Girl’s been dealing with.

Once in her room, she slowly returned to “normal,” the derangement of a few minutes ago reluctantly releasing its grip. I notice her feet have swollen to twice their normal size. Two caregivers come in and inform me that Mom refused her medication the previous night and this morning. She also smacked one of them earlier that morning when she was helping Mom put on her compression socks. The caregiver and I share a joke about her ability to expertly dodge and weave, but inside I’m freaking out that a) she’s exhibited aggressive behavior for the first time, and b) wait … what? She refused to take her meds? Twice? And nobody thought to call me?

I spoke to her caregivers the week before regarding Mom’s compression socks—somedays she had ’em on, some days she didn’t. The only solution I could think is to put a sign up in her room stressing, again, that she is to wear compression socks EVERY DAY, her newly enormous feet being directly related to the lack of compression socks the previous week.

I also get a crush order for her medications from her doctor; if she refuses to take her pills, they can now crush them and give ’em to her in coffee or pudding.

In the meantime, I’m able to get Mom’s morning Namenda pill in her, and her attitude perks up. The rest of the day, a pretty happy Mom and I dink around; we get a late lunch, go to a movie, eat dinner, and I succeed in giving her all medications and tuck her into bed. On my way out that night, I give the crush order papers to a med tech for distribution to the rest of the staff.

I finish the day feeling like Super Woman! I’ve solved problems and turned the day around for Mom.

On Tuesday morning, Mom’s walking buddies call to let me know they had to give Mom her pills that morning because she refused the staff, but otherwise Mom was in a good mood and enjoyed walking the mall with her friends. I hang up happy that Mom’s happy.

But once I see her, I know all is no longer well. She’s sad, not engaged, no spark. Then a med tech comes in to tell me that Mom struck a caregiver that morning when they attempted to wake her. I can feel my self-congratulatory ego deflating into embarrassment at my arrogance; I thought I had beaten dementia—for a few days, at least.

The med tech informs me that they have to notify Mom’s doctor about the aggression and shows me the fax detailing the incident, closing with “please advise.” I secretly hope Mom’s doctor, a bit of a rascal herself, advises them to stop pissing my Mom off, something I am currently too shocked and timid to say.

I bring up the crush order on Mom’s meds. This shift’s med tech knows nothing about it, I again supply the papers, and am again assured that the entire staff will be informed.

I am beginning to realize that while this staff is kind, caring, and respectful, staff levels are terribly skimpy, resulting in a lack of communication amongst the shifts and woefully inadequate resident basic care and engagement. My frustration grows.

I spend the remainder of the day with Mom. She never finds her smile, mostly plods behind me as I attempt to engage her to no avail. I don’t want to think we’ve made a mistake in putting Mom in memory care, but maybe we have? Or maybe we’ve chosen the wrong memory care? I finish the day defeated.

Wednesday morning I wake up in a soul-crushing frame of mind. I have oral surgery scheduled in the afternoon which now seems way more fun than rehashing this week’s dementia fails. I call memory care to see if Mom’s committed murder since I last saw her or grown snakes for hair and turned all who gaze upon her into stone. Nope? OK, then. I head off to the surgeon, relieved I’m not wrestling with my thoughts instead. Later, as the anesthesia wears off, my physical pain cozies on up to my prior emotional exhaustion, leaving me damn near comatose. Then I remember I’ve got oxycodone.

Wow! Now I’m feeling good. Mom problems are a million miles away, and besides, I’m INVINCIBLE! Next time I see dementia I’m gonna kick it in the nuts, then punch it in the face!

I finish the day a short-term drug addict.

Thursday begins with a sore jaw, a depressed spirit, and a look of longing at the oxycodone bottle. But I abstain, and instead call the memory care people to see how Mom’s doing. I’m relieved that she still hasn’t stabbed anybody in the eyeballs. I decide I’ll make her favorite dinner and take it to her. While this is a capital idea, I also recognize that I’m buying myself time, avoiding going to see her, sneakily justifying time away from her. The thought of cooking gets me off the couch, but I feel emotionally crappier than I did before, knowing avoidance is my prime motivation in this scheme, not my love of Mom or her love of turkey peanut butter stew.

Mom is happy to see me. I set out our familiar dinner table accouterment, and after a brief stint of Mom attempting to eat her napkin (d’oh!), she finally dips into the soup. It’s a hit! Mom slurps the soup, licks the spoon, scrapes the bowl and enjoys herself immensely. After dinner, I get her pills in her, we wash up our dishes, shower, relax with some TV in her room, and finally tuck a sleepy, satisfied Mom into bed. I finish the day hopeful that the aggression was an anomaly of missed medication, glad that at least one foot is substantially less swollen, and relieved The Other Girl will be with her tomorrow.

I spend the next few days unburying myself from all the tasks that have been put off this week while The Other Girl and one of Mom’s ridiculously tall grandsons hang with Mom.

Saturday I wake up relishing a second day with no memory care stress. Then I get this text from my sister in the early afternoon: This place is so hit and miss … I really don’t know what to do. Maybe I can go back to full-time caregiving. I can hardly stand this.

I finish the day with a pit in my stomach because I’m feeling the same way.

On Sunday, we go to a park close to the airport where we can see planes land. (Mom loves watching planes.) We have a good day watching takeoffs and landings, and I breathe a sigh of relief because this week has depleted my problem-solving skills. But as I take my leave of her right before dinner Mom says it to me for the first time since she moved: “I want to go home.” I finish the week in tears.

Memory Care: Week 4 – I Can’t Get No Satisfaction

Every day now brings some new anxiety-induced behavior in Mom that alarms us. Our previously mild-mannered Mom is now angry, refusing medications, showers, not eating. She’s lashing out at caregivers both physically and verbally. She was so hateful to me on the day before my birthday that I was utterly shocked. We’ve met with the administration to discuss issues, improve her care, repeatedly attempted to communicate everything we know about Mom to help them help her. All to no avail. The Other Girl and I can no longer justify buying ourselves some freedom at the expense of her all-encompassing misery.

On Sunday morning we make the decision to move Mom back home. We will try to minimize her new behaviors through familiarity with her surroundings, and potentially attempt a different memory care home down the line.

The Aftermath – I (We) Will Survive

Mom came home from memory care five weeks ago. While our transition back to 24/7 care has not been easy, it has definitely been the best move for Mom, and in some ways, for me too. It turns out the stress of Mom being at home is much less than the stress of Mom being some place that was unable to keep her engaged and content. While I’m still in a mighty struggle to keep my cool, I sleep better at night knowing she is peacefully snoring away in the comfort and familiarity of her own home.

We have decided to keep her home through the holidays, utilize all the respite care available to us, and reassess the situation in the new year. We set this plan in motion by returning to her intergenerational daycare for respite, but instead of two days a week like pre-memory care, we ramped up to five days a week post-memory care. We have also secured in-home care one night a weekend, allowing me to connect with friends (like regular people do!) while The Other Girl works her restaurant job on the weekends.

So, we’re back to normal; the frustrating, comical, stressful, exasperating dementia “normal.” It’s not so great at times, but you know, it’s not so bad either.

 L. Glitz’s blog, Stumped Town Dementia, chronicles the dementia adventures of Girl and The Other Girl, sharing hilarious, heartbreaking, bittersweet, and courageous moments of life with their Mom, who has vascular dementia.

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19 thoughts on “‘I Can’t Do This Anymore’: Being a Caregiver Broke Me, But So Did Memory Care

  1. Thank you for sharing your heartbreaking story. Luckily there is more than one person involved in her care. It’s nice that she can still talk and feed herself and walk, and still seems a little bit like the Mom you know and love. Keep looking for an ALF or other facility that seems better staffed. You will need it as she declines. Remember that it’s not your Mom behaving badly, it’s the disease. Read the book “Creating Moments of Joy” and it might help you deal with the decline. It’s taken me a while, but now I’m happy just to see her have moments of seeming content and comfortable. God bless all of you.

    1. I am in a similar situation. My mom is 96 with dementia and in a memory care facility which she hates. She’s always Ben a big part of my family’s life and can’t figure out why she can’t be home. I work my husband works early hours and I have no other help. We live in a small town with little in home care. She’s about an hour away and I was going 2 times a week till this Ovid thing, now you can only visit 1 hr at a time. I’m so saddened to see her so sad.

  2. Hello my mom is not doing good she 75 years old she said lots of pain and suffering she barely can walk my dad continues to work he thinks everything’s okay my mom thinks everything’s okay but when I go over there things are not okay she just about ready to fall down again end up in a care home or even die and I don’t know what to do it’s upsetting me I’m about ready to have a nervous breakdown

  3. Currently living this hell. I had my mom in my hone and it almost sunk me. Memory Care is a disappointment to say the least. We’ve tried three. I’m planning to bring her back to my house. Your line about buying yourself freedom at her expense (paraphrasing) hit me like a ton of bricks. There are zero good answers.

  4. Girl and Other Girl thank you for sharing your heart felt, yet heart wrenching story. It warmed my heart, it broke my heart, it made me laugh, gave me chills, brought tears to my eyes, ending with a smile on my face that you all were able to find somewhat comfort far now.
    Signed: One of the other girls, my mom too has vascular dementia.

    Stay encouraged!!

  5. Girl and Other Girl thank you very much for sharing your heartfelt, yet heart wrenching story that warmed my heart, gave me chills, made me sad, made me laugh, made me mad all while fighting back tears. Your story is my story! My mom too has vascular dementia.

    Signed: The Other Girl too

  6. I thank you for your story. I’ve been in the process for a year now and it’s been very difficult as I’ve read it has been for everyone. In my situation I’m 33 and not in a position to afford to care for my mom at home as I’d like. Not only is it emotionally draining, heart sinking and unbearable… my mom is in a facility that is not of my choice. They don’t bathe her or brush her teeth. I could go on and on. I’m in the process of moving her closer to me because I drive 4 hours to see her to care for her as much as I can in one day. My brother doesn’t help much and instead has moved into her house to take over for his own benefits. I wish there was more help to ppl who really have nothing which is my case. I work two jobs and only have one day off which I use to drive to my mom and care for her for one day. I’ve lost a lot of friends in this process and find myself pretty isolated because no one really cares till it happens to them. I’m still finding my way and staying strong but days are really hard. I’m starting to lose the memories of what and how my mom used to be and the pain is immense. She would be the one I’d talk to during hard times but that person is gone.

    1. I moved my mom closer to me and she is now in a good residential memory care. It’s sure not perfect- just found out tonight they did not start her new medication last week. I was driving 5 hours 2x/month to see her. You must find some balance and live for yourself too. I wish you well through this difficult and heartbreaking phase of life.

  7. The best thing I’ve learned, and it was very hard, was to let my mom acclimate to memory care. The more I visited and took her out for lunch or shopping, the harder it was on her to adjust. You don’t drop your child off at daycare just to pull them out and drop them back off again the same day. Seriously, that will cause major confusion for your loved one with Alzheimer’s. I tell you this not in judgment, but as a tip that helped me. I had to learn the very hard way.

    1. I agree, it takes time for them to acclimate and may be hard for the family to see …but my Mom is 84 and on the go from 600 am to 800 pm without stopping – a very nervous , impatient and hard to handle Alzheimer patient. If we did not get professional help to care for her I would have wound up in a hospital myself

  8. Hi there , your story really resonates with me as my mom has vascular dementia too and has all the same characteristics as your mom. She too is in a new memory care facility, but one that was not my choice and I am thinking of having her live with me until we transition her to new home. Just wanted to know how your mom is doing now and how it was transitioning her back into your home after you removed her from memory care.

  9. My dad is 70 and has all of this plus more. he needs to be watched 24 hours a day he won’t even go on diapers now he pees in the sink in a corner on the wall anywhere but the toilet. I am only 30 and have no strength or will I don’t even want to go on for myself anymore let a lone for some one else.i have no siblings no friends anymore. I’m hungry I have no strength I can’t even muster the will to do things I like. None of the medicines do anything they don’t calm him down. We’ve been waiting on a decision for medicaid for over a year now I never hear anything we call and get no one. The nurse comes once a week but simply checks his blood pressure and leaves. He turns the stove and oven on the instant I turn my back.he won’t embrace a blanket or stuffed animal he gets worse every day. If I die tonight he will just pace in circles peeing until he starves to death there is no one!! How am I to make a friend meet a companion or even have a conversation ever again? I can’t

    1. I am a full time caregiver for my mother. Every patience is different. Try to see a psychiatrics they can help you with the right medication. Is very hard been a full time caregiver with a person with dementia and Alzheimer’s. Only person they going thru the same experience as you we know how tired it is.

  10. I am so sorry, David. Regarding meds, make sure you have authority w/ his doctor & try to be on them constantly abt issues or needed changes. My mom has had many adjustments to find a decent balance, and hers isn’t perfect. I would try to contact Medicaid as frequently as you can & leave messages, request supervisors, etc. You could also talk to his dr about the medicaid issue, & they might have some guidance or a social services person to help. It’s incredibly hard caring for someone in his condition & I can’t imagine doing it alone. If you’re able to get his medicaid, you might have some relief w/ “in-home support services” through them, if your state has it. You def need a break. It’s a rough & thankless job. My mom has vascular dementia after a severe stroke almost 3 years ago. She’s right-side paralyzed from the stroke, so at least can’t turn on appliances, etc. I am so sorry you are dealing with this & I hope since it’s two months later you’ve gotten some relief.

  11. My life-long friend recently moved to memory care (her daughter’s choice). Everyone at the facility keeps telling me, “She’s making a wonderful adjustment; she’s really doing great here!” Meanwhile my friend says the opposite — “Can you help me get out of here? What can I do, Susan? How did this happen to me? How could I have prevented this? I should have been nicer to my daughter!! It’s crazy here! This is prison!”
    Her specific complaints are: the food is terrible, they make me go to bed too early, they wake me up too early, I’m locked in, the residents follow me around and are always touching my hair, the tv is too loud, I hate the “activities”, I can’t go outside, there is no garden, I miss my cat, etc.
    The contrast to what the staff (and her daughter) say, and what I see and hear makes me think this whole memory care thing is some kind of sick joke. I’m quite heartbroken about it, and I feel, in a way, like someone who is being gaslighted!

    1. This! This is exactly what I’m going through with my mother at this time. I walked into the Memory Care facility tonight and heard how well my mom is doing, and then I walk down the hall and see her. Everything about her has changed (for the worse), and she’s only been there 10 days. She’s miserable, the food they claimed was delicious is disgusting, and I suspect that every moment I’m not there she is neglected, and based on her appearance she is being neglected. I have cared for her for 8 years, and I am mentally and physically broken, but I think I have to bring her back home. I can’t even sleep because all I do is dream about the lack of care they give her.

  12. I am regretting moving my husband (79) to memory care last week, after a very disappointing try at in-home care. At the MCU, staffing is so inconsistent, 50% agency people constantly changing. The second night they tried to get him back to bed and he grabbed the caregiver in protest, filed a report. I went and picked him up. They said the next time he has to go to a psych unit. I now drop him off at 7:30a and pick him up in the evening. Most expensive day care in the world. They keep pressing me to change his PCP to their in-house provider and change his meds to their bulk ordering system. Rather than hoping their staff becomes capable of caring for him, I think I need to learn better approaches and do it at home.

  13. If you can help it, don’t move them out of your home. My brothers convinced me to move mom, and within a week she had broken a hip and a month later she was dead from pneumonia. I have so much guilt that I don’t think will ever go away.

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