The ever-changing meaning of Mother’s Day

With Mother’s Day on the horizon, I can’t help but think about how its meaning has changed for me, multiple times. Of course, before I was a mother myself, it was a day to honor and celebrate my mother and grandmother. Then, 12 years ago when I became a mother, it was nice to be celebrated by my husband, my mom and my son as he got older. Since Mother’s Day 2013, however, the holiday has reverted to being totally about Mom, for me at least. I don’t even think about myself on Mother’s Day, as I just make plans to spend time with her, take her out to lunch, doing things that she will appreciate, because I never know if this will be her last Mother’s Day.

So tomorrow, we are picking Mom up from Assisted Living and taking her to the local diner. No, it’s not fancy, but it’s what she loves, and it’s easy to get her in and out of (i.e., wheelchair-accessible). Mom has been on hospice since February, as a “routine” hospitalization found another aortic weakness near the repaired tear from 2012. She has gained about 30 pounds in the past year, much of it fluid as her heart failure has worsened. Hospice keeps a close eye on her, keeping her comfortable and not “freaking out” about things like the many UTIs she still experiences or a fall here and there. They have encouraged me to take Mom out as much as we can, as often as she likes. That is easier said than done, however, with her now at 200 pounds and having more trouble transferring from wheelchair to car with her increasing fatigue. Luckily, my husband and son will be there to help tomorrow, and to me that’s the best Mother’s Day present they could give me.

Negligence or Just an Accident??

This past week has been very stressful. On Sunday, I received a call from Mom’s assisted living. The aide very casually told me Mom had fallen and hit her head so they were going to send her to the ER via ambulance. She made it sound like no big deal, just a small cut that might need stitched, and was even laughing a bit when she told me. I asked her to keep me posted, as it was Father’s Day and we were in the middle of celebrating with my husband and father-in-law. I thought this was probably no big deal, just another fall, and was glad that it was being taken care of.

About four hours later, another aide called me from the ER to tell me that Mom was being released back to the assisted living, and that she had had stitches and a CT scan and everything was fine. They assured me that she was tired and would be going straight to bed, and advised me to wait till the next day to visit.

With more than a little trepidation, my son and I set out to visit Mom bright and early the next morning. I warned my son to be prepared, that Mom-Mom would probably have some ugly black stitches in her forehead. Little did I know that was the least of her problems. When we arrived at the assisted living facility, an aide warned me to be prepared, saying Mom’s appearance was “shocking”. I glanced around the room and didn’t see her until they pointed her out to us. Her back was to us but even from there we could see black, blue and purple bruises all over her very swollen face. She wasn’t wearing her glasses, as they had broken in the fall, and had a bandage on her forehead. Her left eye was swollen shut, and her top lip was swollen to the point where it would be hard to open her mouth very far.

And this was supposed to be a “small fall?” I thought to myself as I sat there visiting with Mom, taking in her entire appearance. She claimed to feel well, and kept telling us that she was in a fight, and some guy used his fists and a stick to beat on her (her exact words). I left the area where we were visiting three times to talk to staff, to get information from the aides that I should have been given as soon as I walked in the door – the incident report log from the past night, and a copy of all paperwork that the ER sent her home with. One of the aides working there that morning happened to be working last night as well, and told me that they were “all” outside when Mom decided to go up the stairs in her wheelchair. She claimed that Mom fell forward, with her wheelchair coming down on top of her.

The next day, however, I received a completely different story from another aide, who was kind enough to accompany us on a visit to Mom’s doctor. She was not present that night, she said, but I trusted her version of events more as she has been working at the assisted living for the entire almost three years Mom has been there (and she just happens to be the daughter of the owner of the AL facility). This aide told me that Mom had been on the front porch sitting in a wheelchair, with another resident out there as well (no staff), when Mom decided to go DOWN the stairs in her wheelchair. The being strapped in and wheelchair falling on her parts of yesterday’s story were correct. This put a completely different spin on things for me.

Firstly, why was Mom outside on the front porch with no staff present? One of the more “with-it” patients was out there with her, but it is not her responsibility to watch over Mom. You don’t leave an 80 year old woman with Alzheimer’s out on the front porch on a Sunday night, even for a few minutes! Secondly, why was I given a different story, or maybe not the whole truth, from the aide yesterday? My son even said to me, “That’s not what the girl told us yesterday – she said she fell UP the stairs” so I know I didn’t mishear or misunderstand what she said. And finally, I thanked God for watching over Mom, as the doctor told us she had NO broken bones, amazingly. She had ugly contusions and swelling on her face, a laceration on her forehead, and a sore knee that needs an x-ray, but that’s really all that happened. She could have broken ribs, or she could have died!

The owner of the assisted living facility quite surprisingly did not reach out to me, as would be his norm, so after stewing about this for a night, I emailed him. I requested a visit, privately with just him and no other staff, as soon as possible. Unfortunately he is currently dealing with a family situation of his own but told me as soon as he gets home, I will be his top priority. So I wait a few more days.

After this long post, my question is, was this just a terrible accident, or negligence on the part of the facility’s staff? I have no plans to take legal action or to move Mom, as she’s happy and settled, but I just would like to know what others think. I am quite anxious to talk to the owner soon, and hopefully get some answers and to prevent this from ever happening again to ANY resident.

Sometimes You Just Have to Laugh, When You’re Tired of Crying


This week my son and I visited Mom for the first time in a little over a week. Her assisted living had called me and requested no visitors with all of the flu germs and viruses going around. Luckily Mom didn’t get the flu, but she did have a nasty stomach virus (seven of the residents there had it, I was told – I swear, those poor girls that work in the assisted living must be saints). I called this week to see if we could visit and we were given the all clear.

When we sat down at the table with Mom, she looked healthy and bright, not at all sick. I asked her about the sickness and she told me she’d only been sick once (which I highly doubt) and that it didn’t bother her much. Mom was more fixated on telling us that she didn’t get her fruit at lunch and was pissed about it. “I’ve spent so much money here, I feel like I deserve it!” she said. Then she proceeded to tell us how she sat at the dining room table, waiting for her fruit after lunch, and when it didn’t appear, she wheeled herself into the kitchen to get it herself. She told me that “they didn’t like that very much” and “gave her hell for it.” I just laughed and tried to change the subject, like I always do. But for some reason, she kept returning to the damn fruit! “Do you want some fruit? We can go in the kitchen and get it. I wonder where my fruit is? Do you think they’re bringing my fruit?” I wanted to scream, “It sounds like you already had your damn fruit!” but instead I looked over at my son, who was smiling and trying to stifle a laugh. I found myself laughing too.

Sometimes you just have to laugh, when you’re tired of crying. It doesn’t do anyone any good to get upset, angry or sad about the way Mom’s mind works now. Instead of banging my head against the wall, trying to make her understand she already ate her fruit, I just smiled and nodded, listening to her ramble on about how good the pineapples and bananas were. We stayed almost an hour (a feat in itself) and when we left, she was still asking if we wanted fruit and if we were coming back for dinner. That still pulls at my heartstrings, even though I know she will forget whatever I tell her a few minutes after I’ve gone out the door. I just leaned in, kissed her forehead and said “we will see you soon,” like always.

Interesting Study on the Relationship of Depression and Anxiety to Alzheimer’s Disease

I just read an email from the Alzheimer’s Association today that refers to an article posted on U.S. News and World Report. It says that depression, anxiety, and sleeplessness can precede Alzheimer’s disease. This was definitely the case in my mom, although she had depression, anxiety and sleeplessness for MANY years prior to her diagnosis of Alzheimer’s (pretty much for as long as I can remember, since I was a child). This article is fascinating and I encourage you to read it if you are interested in Alzhemier’s disease:

Depression, Anxiety Can Precede Memory Loss in Alzheimer’s, Study Finds

We are still here…

I haven’t posted on this blog in almost a year, and I feel neglectful. No, there haven’t been any real changes, or breakthroughs, or anything that demanded writing about, but I still like to keep a history of what’s going on with Mom, even if it’s strictly for my own benefit.

We are still here, pretty much the same as before. In August, I took Mom to a geriatric specialist, who confirmed my worst fears…that she does have mild Alzheimer’s disease. He said she likely would have developed the disease without the aortic aneurysm and resulting physical problems, but that these exacerbated her situation. She also has another type of dementia along with the Alzheimer’s. It’s just a slap in the face to actually hear this diagnosis come out of a doctor’s mouth, even if I had been suspecting it all along. I mean, it’s my mom, someone I never would have guessed would be facing this awful disease. And it makes me, selfishly, worry about myself too, as now she and her brother both have the same diagnosis.

My son has become gentler with his grandmother, which is a good thing. I’m not sure if he’s maturing, or if he just realizes she won’t be here forever, but he’s better able to spend time with her and seems to enjoy our visits. I don’t force him to go but try to take him as much as possible, and maybe that’s some of the reason his attitude towards her has changed, too.

I am still seeing my therapist sporadically, usually every two weeks if we can make it. I do feel that I have changed a lot since I started seeing her almost two years ago, and she does too. I’m better able to handle situations that come up unexpectedly, and to handle the guilt that I will always have about Mom residing in assisted living. The bad thing is that my therapist is moving in a few months, so we are trying to taper down our visits. That is going to be a big change that I’m not sure how I will handle.

My focus in life over the past few months has been my son, as he was in an alternative private school that didn’t work out for a variety of reasons. I’ve been homeschooling him for the past two months, which, with my freelance work, doesn’t leave much time for anything else. I feel like I haven’t seen Mom as much as I’d like, but I do keep  in touch with staff there, so I know how she’s doing. More guilt to pile on top of guilt, but right now my 10 year old son has to be the top priority. We are taking him to Florida in a few weeks, and are looking forward to a nice break (hopefully I can enjoy it without being notified 10 times that Mom fell or hurt herself!)

Will This Happen to Me Someday?

I just received some startling news this week from my cousin whom I hadn’t talked to in a while. She messaged me that her dad, my mom’s brother, has what they are calling “rapid-onset Alzheimer’s.” This is a successful man who has owned his own business for years, has gradually handed the business down to his son, and has been dealing with a wife with dementia for the past few years now. I don’t know the details, but my cousin told me that he ended up in the hospital on Christmas day and I guess that’s when he was diagnosed. Currently both of her parents are still living at home with someone coming in daily to prepare food and give them meds, but she doesn’t know how long that will last. I told her to call me anytime she feels the need to talk, as I know more than I ever wanted to know about long term care options.

This has me very concerned. Does dementia run on my mom’s side of the family, and if so, will this happen to me someday? My mom’s mom died at age 60 of a stroke, so she never got the chance to become old enough to find out if she would have had dementia. Her father lived to his late 70s and was still driving and living alone at the end, a bit muddled but I don’t think he had what would be referred to as dementia. If it does run in the family, is it inevitable that I will get it, or can I do something to prevent this from happening? It really has me thinking about taking better care of myself. For a while after Mom got sick, I was exercising regularly and feeling good about myself. Then the migraines got worse and I stopped. Now I’m thinking that if exercising and taking care of myself will help prevent this horrible disease from befalling me in 25 years or so, I should definitely get back on the treadmill. I started walking the night I found out about my uncle’s Alzheimer’s, just a short 20 minute walk with the dog, not a fast pace because she’s an elderly dog and can’t go that fast, but at least it was something. I also heard about the study that might be able to predict who will get Alzheimer’s years before it occurs. Would I want to know? Knowing what I do about the disease and watching Mom’s decline with dementia, I just don’t know. I have a feeling that if I knew something like this was likely to occur, I would want to take steps to ensure that I wouldn’t be around long enough for it to happen. I don’t want to put my husband and son through anything like that.

We Must Be Our Loved Ones’ Watchdog and Advocate

Something happened today that made me question, once again, the so- called wisdom of doctors. Last week Mom’s insurance company notified me by email to let me know there  was a serious medication interaction in her file. I logged on to the site and saw that Celebrex, which she was prescribed last fall for arthritis and shoulder pain, was contraindicated for people with a history of aortic aneurysm, bleeding problems and stroke…all of which she had. I called her doctor’s office immediately to check on this, only to find that the office closes at noon on Friday. Not wanting to leave a message, instead I sent a fax to Mom’s doctor telling her of the interaction, and that she also was told not to take NSAIDs of any kind when she lived with me. I told her I hoped to hear from her soon regarding this and what we could do about it.

This morning, a nurse from the doctor’s office called me to tell me they were discontinuing Celebrex immediately and switching Mom to an opiate. We discussed that opiates were her last resort, the only thing left she could take, and I thanked the nurse for calling.

The more I thought about this today, the more angry I became.  What if the insurance co hadn’t picked up on this dangerous contraindication? How much damage has already been done by her being on Celebrex for six months? Why didn’t her doctor know her history better…I mean, not just one condition but THREE made this a dangerous drug for her?! Mom has had vascular issues every two years starting in 2010, so she’s due for another this year, and what if she doesn’t recover this time? Her first vascular problem was thought to have been exacerbated by Plavix, now another medicine is the threat…I am going to keep a close eye on this situation and se what develops…hopefully nothing bad, but I can’t help worrying about it…and being very ANGRY with the medical profession!!

Expressing Sadness

I haven’t posted in a while because things with Mom are pretty much the same. We got to a point over the summer where I could take her out for lunch and actually enjoy visiting with her. I was feeling pretty good about everything until last weekend when I visited her with my son. As soon as she saw me she wanted to leave, thinking we were going out to a restaurant again. Our entire visit was spent with her saying every few minutes, “well, I guess we can go.” I keot telling her no, we aren’t going out today, we are visiting you here. I asked the workers if she seemed worse to them, and they said she’d been that way for the past three weeks or so. The doctor upped her Seroquel, again, and they’d given her the Ativan prn, but she had that wild look in her eyes she used to get when she was in one of her “cycles” when I was growing up. I’m thinking of taking her to a geriatric psychiatrist,  if I can find one, to have her evaluated.

Today at my therapy appoint ment, my therapist noted that, although I’ve gotten pretty good at being able to express my anger, for some reason I still cannot express sadness. It’s like I channel those sad feelings into anger because it’s safer for me. She thinks I’ve been taught, from an early age, not to express sadness, that it’s “bad”. I know I was always taught not to “feel sorry for myself”  and have self-pity, but she said feeling genuine sadness for the way I grew up, the way I was treated as a child, as if my feelings didn’t matter, is not self pity. We are going to try to get to the root of my sadness in therapy, so that I can feel comfortable expressing it.

Thanks for the suggestion…

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“Out of Control”

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A few things have happened lately to make me worry about Mom’s ability to remain in assisted living. I keep hearing reports from the daytime staff that the overnight staff are having problems with her, that she won’t sleep much, gets up and tries to get dressed in the middle of the night, falls, etc. Because I’m not hearing these reports directly from the staff persons involved, I don’t know how much to take at face value. One particular overnight staff person I have in mind that I have met seems coarse and rude, and I could see that she and Mom might not interact too well – Mom has complained about her to me on more than one occasion, saying that she’s “mean” and “not nice.” Then again, how much of what Mom says should I take at face value these days?

Last weekend apparently it got to the breaking point, because I was informed on Monday (not Sunday night when this actually occurred) that Mom had been taken to the ER. The assistant director who called me to tell me about it, the next morning, asked if the night staff had called to inform me (which they had not). She said that the nighttime staff person was having problems controlling mom “due to her altered mental state” and that she wouldn’t follow instructions, so they sent her to the ER. The assistant director had no knowledge of what they’d done at the ER, no idea of any tests were run, etc, because none of their staff accompanied her to the ER, and of course I wasn’t called (why this happened this way remains a mystery, and one I intend to get to the bottom of). So I called the ER and found out what I had to do to get access to the records from that night. I went to the hospital, showed my Power of Attorney and identification and requested the records.

The ER records stated that Mom was only kept at the ER for a few hours, and was returned to assisted living that same evening. The ER doctor said she was pleasant and cooperative, that the only complaint Mom had was that she hurt from falling the night before. They x-rayed her hip and shoulder and only found degeneration indicative of arthritis. They did no mental status tests, said she was oriented to person and place, and that was that.

So I have to wonder, was she really having a problem with one particular staff member and not really “out of control” as this person had said? If Mom had had a stroke or something, I would think she would be bitchy with everyone, not just the staff at the assisted living but also at the hospital, which she clearly was not. I plan to follow up with the director of the assisted living facility when he gets back from vacation. I already spoke with the assistant director there and asked if I should hire someone to come sit with Mom for the overnight shift or what. The assistant director said, “We’ll work with you to keep her here…” making me think that kicking her out had been considered. I told her that I want Mom to stay there because it’s so much better than the nursing home (which it is, except that the overnight staff isn’t up to par in my opinion). Once I get to the bottom of what really happened, I can decide if I need to pay someone from the outside to “babysit” her at night so that she doesn’t bother the other residents…then again, I think, isn’t that part of the job of the assisted living staff they already have there, couldn’t they have an extra person sit with her if they know she’s going to be a problem?

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Living in Her Imagination: My Mom's Dementia Tale

The story of my mother's spiral into madness and its effects on her family and friends

My Demented Mom

More than five million Americans suffer from Dementia. My mom was one of them. A site for young adult caregivers struggling and coping with "the long goodbye." Created in 2007. Ended in 2014. Stay tuned for my new project about life after dementia, called "The Recovering Caregiver."

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