Mom’s Stroke – My Dilemma

Bob

On Christmas Eve, about 0900 I took a call from a nurse at the Alzheimer’s/Dementia facility where my mother now resides. At her current age, 94, I was not surprised by the news: “Your mother’s in her bed, unresponsive; her left side is flacid, and she’s not following commands.”

Before diving into the emotional challenges this presented, I want to reassure you that as of now she’s exhibited a near miraculous recovery, with only a minimal residual left-sided weakness, which has left her a bit more at risk for falls.

So, back to the story… Ok, of course if she’s “unresponsive” she’s not following commands, but as a nurse, I saw no conflict in the report. It’s similar to what I’ve reported to physicians regarding patients in the ICU under my care. It’s the jargon…
My in-the-moment analysis – she’s had a stroke, and a significant one. What’s unknown – is it a clot blocking the blood flow to her brain, or is it a ruptured vessel bleeding into her brain.

My sister and I are both designated as decision-makers for her health care if she’s not able or competent to attend to her own needs. And, importantly, my sister and I are in agreement regarding our understanding of how Mom wants life-threatening events dealt with if she’s not able to answer for herself. She wants no heroics; no last-minute efforts to stave off the inevitable as long as possible; she’s DNR – that is, Do Not resuscitate. Further, no intubation (breathing tube driven by a machine to breathe for her), no artificial nutritional support – that is, no tube feedings.

As I dealt internally with the likely impending demise of my mother, I busied myself in gathering and confirming the documents regarding both her health care, and how she wanted to be buried – well, cremated – and her ultimate resting place next to my father. And, of course, I sent off an email to family regarding the turn of events.

For those of you who may not already know, my mother has suffered a profound loss of both long-term and short-term memory, and while not diagnosed with Alzheimer’s, she exhibits many aspects of that condition. For the last two years she’s not recognized me, nor does she remember her marriage to my father. When I last introduced myself as “Bob, your son.” She commented, “How can I have children? I’m not married.” She has, at times, identified me as her late brother, but there is no recognition beyond that.

So, I’m ok. No last-minute life-saving efforts; let nature take its course… Then comes the real-life turn of events. Late that afternoon I get a report: She’s up and walking with assistance; not following commands; and is exhibiting an expressive aphasia – that is, she speaks, but it’s a jumble of words in a non-sensical order – “word salad.”

Prior to this report I was clear about my options, responsibilities and decisions. However, her condition at this point is something unanticipated and damn challenging. She is conscious but unable to understand incoming information and unable to communicate her needs and desires. My dilemma? She’s unable to express her desires; she can’t feed herself and likely won’t submit to any type of external feeding strategies (Intravenous, or, a tube in her nose, or directly into her stomach).

Now what? If I follow her expressed desires there is no feeding by staff, by tube, or intravenously. But… She’s going to potentially experience both thirst and hunger. Furthermore, she can’t say what she wants – remember the expressive aphasia (word salad), nor can she understand any explanation as to why she’d be denied water and food. And, she can’t understand an explanation – the evidence being her inability to follow simple commands.

Back to the present.  As I noted above, she’s back to her baseline.  She still doesn’t remember who I and my sister are, but she is able to feed herself, make her needs known, and move about without assistance.

I remain unsure about what how I might handle a repeat of her event.  What to do for someone who’s unable to understand incoming information, or express their desires, but with a previously laid-out plan for “no heroics” – no rescucitation; no life-extending measures.  We really never covered the scenario briefly experience over the Christmas holiday.

Stay Well

Stroke Resources:

F.A.S.T.
is an easy way to remember how to
recognize a stroke and what to do. Spot a stroke
FAST.
Face drooping.
Arm weakness.
Speech
Difficulty.
Time to call 9-1-1

Stroke – Stanford Health Care

 

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The Search For Long Term Care – Mom, Dementia, & Me

Previously posted on openplacement’s blog

Mom-3-17-2013The Beginning

Six years ago my mother was the primary caregiver for her elder sister. At the time she was eighty-six, and her sister was eighty-eight. Her sister’s health had been slowly declining, with increasing difficulty in her ability to manage not only her activities of daily living – mobility, hygiene, dressing, but also other tasks such as grocery shopping and meal preparation. Their time together up until then had been both pleasant and successful. However, as my aunt’s short term memory began failing with the onset of dementia showing, their relationship suffered. My mother could not understand why Lil couldn’t remember what they had just agreed upon, and Lil, when challenged about her failing memory, would become angry and verbally abusive.

The situation hit the breaking point when my mother feared for her safety and dialed 911. When my sister and I found out about the state of our mother’s relationship with her sister, we were compelled to step-in. My sister took on the challenge of finding an appropriate longer term care facility for our aunt. Happily, she’d worked for the same employer virtually all her adult life, and had a reasonable retirement income, and perhaps more importantly, excellent long term care insurance. Finding an appropriate long term care facility was not too difficult given her financial situation.

I faced a more challenging situation. My mother had also worked her entire adult life, but had moved from one temporary job to another. Those positions had not included any long term benefits. Furthermore, her one long term employer, a small art college, had offered very little in the way of retirement or long term health care benefits. In short, all my mother had to work with was her social security benefit, and later, state benefits for her health and housing (Medicaid). It was our good fortune that while in training as an RN, I’d had the opportunity to visit a number of assisted living facilities within a short drive from my home, and not too far for my sister to drive when she wanted to visit. After a review of the available long term care facilities within reach of my mother’s budget, we settled on the one that offered the best combination of services and social programs for our mother.

The Move to Long Term Care

The physical move, about 50 miles from her old apartment to the new long term care facility, wasn’t too challenging, except for my mother’s upright piano. Having played all her life, that was the one item that she felt she needed to keep her feeling good about herself. Since neither my brother-in-law nor I were interested in adding piano moving to our resumes, we found a firm to accomplish that move (if I remember correctly, about $200), the rest of her possessions my sister and I moved into her new apartment.

After relocating to long term care, the first challenge for my mother was getting to know her new neighbors. This went fairly smoothly, or so my sister and I thought. One aspect of my mother’s personality is her profound desire to avoid any confrontation. She’d told me in past conversations that her approach potentially confrontational situations was to “smile, nod my head, and then do as I wanted.”

Transition to Long Term Care and Discoveries

I ran across this behavior on numerous occasions as my mother would agree with plans, and then ignore them, or actively, but surreptitiously, subvert plans. Since our contact was mostly by phone it was easy for her to do as she pleased in most situations. I would only find out after the fact that she’d made contrary decisions and had acted on her whims, which were not necessarily in her own best interest. This tendency put her in the hospital twice after falls that were initiated by her failing to use her walker or cane as her gait became increasingly unsteady. I know in my experience as a nurse that this is not an unusual behavior. I’ve had numerous patients over the years who would say, “I hate using that thing. I’m OK without it.” Of course with my Mom, if I wasn’t in the room to remind her, she’d choose to believe she was OK too, until she fell. Her first fall led to a week in the hospital with a hairline fracture of her hip. Painful, but luckily, not requiring more than rest and rehab. She then spent a month in a skilled nursing facility for the follow-up rehab.

It was during this stay in long term care that we got the first strong hints about changes in her mental status and memory that had not been particularly apparent before. I got several panicky phone calls in the middle of the night with all sorts of seemingly wild claims. I realized that my mother was “Sundowning,” a phenomenon commonly seen in hospitals, where patients who are relatively lucid during the day, become increasingly disoriented as the night progresses. There were not only calls to me, but 911 calls as well. When her rehab was completed and she went back to her apartment, I’m not sure who was more relieved, my mother, the facility, or myself…

Progressive Changes – Onset of Dementia

After that initial fall, my mother began a slow decline and showing signs of dementia. On about a weekly basis I would get angry phone calls accusing me, or my sister, of not caring about her, followed by tearful, embarrassed apologies, sometimes within minutes, or perhaps the next day. She repeatedly insisted on moving back to her old apartment and resuming the care for her elder sister. When we talked about the situation that triggered the move, it was met with a range of responses from acknowledgement, to enraged denial. Her mood swings were becoming more labile and profound.

After a visit to her doctor, which included a brief mental status exam (MMSE), her daily regimen included both Donepezil and an anti-depressant. Her behavior improved and mood swings were less extreme, but the phone calls and outbursts still continued, just at a reduced frequency. And, her apparent feelings of guilt about having “abandoned” her sister continued, with an increasing level of denial that there had ever been a problem. However, during this period, she had a second fall while hurrying to dress for breakfast, falling backwards into a filing cabinet and fracturing three ribs. The hospital and nursing home stays were repeated, with similar experiences. I did feel a need to intervene when I discovered that the nursing facility was allowing outside lab personnel to come in at 3 a.m. to perform lab draws. This was extremely disorienting and frightening for my mother, and I had to insist that her labs be drawn after she’d awakened for the day.

While there was a grumbling acceptance by the long term care facility management, I felt it was a necessary step for my mother’s well-being. Furthermore, I’m sure the night staff and the local police where happier as their nights were not interrupted by unnecessary disruptions and phone calls. During this time my mother decided that in addition to being her designated power of attorney for her health care, that I should also be designated her financial power of attorney as well. This was a fortunate choice. For the first 4+ years, my mother had been successfully managing her own funds. While I had joint access to her account, I had no authority over her spending, but not long after my change in status, I found she was writing checks she couldn’t cover, and which she didn’t remember.

Failing Short-term Memory

At this point in time her failing memory was becoming increasingly apparent. With her inability to safely manage her accounts, I stepped-in and removed checkbooks and debit cards from her possession (with her cooperation), and also directed that the bank was not to advance funds to her without my approval. Her having granted me legal authority over her finances was a critical piece in my ability to protect her from herself. Without those documents in place, I could not have limited her access to her accounts. Once again, enraged phone calls, but now accusing me of having taken her account without her consent, and obviously not caring about or loving her. These were terrifically hard calls to receive.

I won’t claim that over the years we haven’t had our “issues,” but there had never been any question about care or love. What was particularly frustrating from my perspective was that my training and experience as a nurse seemed to vaporize in those moments. It didn’t matter that I was in my 60′s and she in her 90′s; once again I was her little boy, and I was deeply challenged to respond and act as an intelligent, trained, health professional. This situation lasted for close to a year. I not only had numerous painful conversations with my mother, I also had encounters with the local police (she called them claiming I’d abandoned her and stolen her money), emergency responders (calls triggered by her anxiety, leading to hyperventilation syndrome and related symptoms), and both calls and visits to the local emergency room.

Current Situation & Long Term Care for Mom

Currently, we have a caregiver who follows checks-in with my mother several times per day, making sure she takes her medications appropriately, attends meals and facility activities, and most importantly, that she’s safely in her room at the end of the day. My mother’s short term memory is non-existent. It’s not uncommon for her to forget in mid-sentence that she initiated a phone call, and instead thank me for contacting her. When she leaves her room for a meal, upon her return to her room she’ll call me to let me know she’s “moved back in” to her old place. Sadly, her long term memory is beginning to show signs of significant deterioration as well. She calls me upwards of a dozen times a day, often asking how to contact her parents, and it’s been clear on more than one occasion that she’s confused me with her late brother, or even my late father, both on the phone and in person.

At this point, the saddest aspect of her deterioration is that she is unable to recognize her grandchildren, and has no recollection that she also has great grandchildren. I’ve supplied our caregiver with an abridged version of her life and family, so that she can reminisce with my mother about experiences she’s had. According to the caregiver, she enjoys hearing these stories, and to either relive, or better, remember.

My wife, sister, and I feel fortunate that my mother is in a safe environment, and one that we could not as safely provide if my mother were to live with us. Our home would be unsafe for her due to bedrooms located up a flight of stairs, access to the stove, and our location in a semi-rural situation where she could easily wander while my wife and I are off to work. In her current living situation her housing and meals are provided, and her caregiver is able to see and assess her situation several times per day, as well as arrange for appointments with her healthcare providers.

NurseBobStay Well

Disclaimer: This information is not intended to diagnose or treat any condition, or to replace the advice of a doctor. NurseBob disclaims any liability for the decisions you make based on this information.

The 3 D’s – Delirium, Dementia and Delusion

NurseBob

NurseBob

 

Delirium is an early warning sign when it comes to caring for an aging family member or loved-one, and despite the title, delirium is really the focus of this post. The other two topics, Dementia and delusion, are mentioned with the intent that you’ll have a working definition of the three, medically different, conditions so you can identify when someone you care about, or are caring for, needs to see a medical professional right away.

Along with delving into delirium in the aging, and briefly defining dementia and delusion near the end of this post, I’ll be sharing a phrase that is a well-recognized descriptive term, which may make it easier for you to be heard more quickly when you want to have your loved-one seen! Continue reading

Mom’s Acting Crazy! – The Elderly and Urinary Tract Infections

NurseBob

Bob

Unexpectedly, your mom, dad, granny, is actingly strangely.  They seemed fine yesterday, but today they’re calling the police to find out why you’re not visiting anymore (you were there yesterday), making plans that make no sense at all (“I think I’ll drive across country to see all the sights I missed as a kid.”), accusing you of stealing from them (of course you’re NOT!), etc.  It’s not commonly known that seemingly minor infections, such as Urinary Tract Infections (UTIs), can cause profound changes in behavior for the elderly.
As our population ages, and as many of us find ourselves caring for our increasingly elderly and frail parents, we are faced with situations which we are neither trained to reconize, nor handle.  So, if you’re in charge of the care for an elderly parent, I have some thoughts on what to look for. Continue reading