Tag Archives: Caregiver

Navigating Long-Term Care

I spend an inordinate amount of time thinking about long-term care and worrying over who will take care of J if (or when) something happens to me. This is a complex and troubling problem exacerbated by: our age difference — I’m 11 years older and approaching retirement age; having an 11-year-old who has 10 years to go before graduating college (hopeful father!); having a limited number of immediate family members many of whom are already dealing with age-related problems; and a strong desire to keep J out of a traditional nursing facility.

The key question is whether J will regain any level of self-sufficiency with respect to activities of daily living (ADLs) and what will that look like. The answer is … nobody knows, but I suspect the most prudent thing to do is plan for the worst case where she is in need of full-time support for all activities. Putting aside the obvious financial challenges of this scenario, I worry about how J will receive that support in a way that maintains a reasonable lifestyle and allows her to continue her parental duties with our daughter. Remember, J is young (51) and could live a long life — her grandmother is thriving at 100 years old. Additionally, she doesn’t have any pressing medical conditions that might shorten her lifespan. She deserves to be able to live a fulfilling, love-filled life once I’m unable to care for her. To complicate matters even more, I haven’t even considered the scenario of what we will do if I become disabled and we both require long term care.

One Strategy of Many

Our current strategy is that my sister who is 7 years younger will take over the caregiving role for both J and our daughter. She lives nearby, is unmarried with no kids of her own, and very familiar with the daily requirements of running this family as she is my regular backup. She does have a full-time job that requires some travel so she would need a daytime aide and occasional full time support to help with J unless she is willing to stop working. While this is a sound plan, it’s a huge imposition. I’ve considered other family members or close friends, but none are easily able to assume J’s care. J’s older sister is already caring for their mom, J’s father is approaching 80, and J’s closest friends are dealing with their own life complexities. While I’m certain people (including friends in town) will step up to help if the need arises, there isn’t an obvious long-term care solution.

It all comes down to money. I have friends who are financially secure and caring for an elderly parent, and able to afford one or more full-time caregivers, housekeepers, chefs, drivers, etc. We don’t fall into that category by a long shot — if we manage our investments carefully, we should be able to put our daughter through college and provide a reasonable financial cushion for us (or just J) as we age, but full-time help is expensive and would drain our resources in a matter of years.

There Needs to Be a Better Way

Over the past decade, I’ve joked with family and friends about the need for building a “compound” where we can all live and care for each other as we age. The truth is that this is a reasonable idea, and something that we as a country should consider encouraging and supporting as more and more baby boomers approach retirement age. For example, J’s grandmother recently moved into a home which is basically someone’s house where a few senior citizens live, receive meals, medical assistance, and companionship.

This a compelling model, far more affordable than traditional long-term care assisted living or nursing facilities, but one not easily found in the US. Oh, and I should mention that most social workers and attorneys I’ve discussed all this with have already suggested that I separate and “spend down” J’s assets to qualify her for Medicaid — alleviating most of the financial burden of placing her in a facility. I’ve resisted this and will continue to until I exhaust all other options. Interestingly back in 2010, Joe Shapiro from NPR wrote about the increasing population of younger people in nursing homes, so at least, I know I’m not alone in trying to figure this all out.

As is the case with most of my posts, this one is not an exhaustive study of this topic and doesn’t even offer any advice. Our journey towards a solution will take time, and all the while the clock is running, and my sense of urgency is growing. What challenges do you face and what solutions have you found?

Women Like To Have Their Faces Washed!

This blog was created to discuss the difficulties of being a male caregiver, especially when the person needing care is your spouse and a female. Clearly, if you look back through my published posts you’ll see that I haven’t written much about that topic, not that I haven’t spent a huge amount of time thinking about it. The problem in part is that this is a difficult topic — duh, of course, and, confidentially, I’m embarrassed to admit how little I know about a woman’s needs despite considering myself a well-versed, modern male who has had plenty of female friends and relationships (and even two marriages) over the years — I even have a female sibling who I will herein refer to as my “sister.”

The other day, the problem came to a head when my sister, who was helping out for the weekend, declared that she had brought over some “Neutrogena naturals purifying facial cleanser” to the house because “women like to have their faces washed!”

No offense Sis, but I’m not sure if you meant that this particular product was especially nice for female face washing, or you were implying that I don’t wash J’s face regularly or correctly. I, of course, assumed the later, and, reluctantly, I admitted that I don’t wash J’s face either regularly or likely correctly. J has beautiful skin, and aside from an occasional wipe down and somewhat regular moisturizing with “Clinique Dramatically Different Moisturizing Lotion“, I try to do no harm. So, accepting that I had been put in my place, I now sit down to write about why being a male taking care of a woman is so hard. Note: This will be a lengthy ongoing discussion so right now I intend to highlight major areas and come back later with more details.

Women ARE from Venus!

If the person you care for is fully able to communicate their needs and desires, then you might want to skip the rest of the article. As a reminder; J’s speech and communication skills were directly impacted by her stroke so, while possible, she is often not able to tell me what she needs physically or emotionally. I have to rely on my knowledge of her behaviors, human nature, and what I learned raising a daughter– sadly, this many times isn’t enough.

Sure, there are obviously well understood physical and emotional differences between women and men, however, the devil is literally in the details, and unless you’ve grown up caring for a female body and psyche, you are not likely to identify or appreciate all the nuances. Let’s start a list of the trouble spots:

  1. Grooming — I apologize for the generalizations (throughout) but women require a level of grooming care that I’m just not comfortable with. Washing and caring for long hair, shaving underarms, legs, and other areas, moisturizing all over, and trimming and polishing nails are just part of the regular activities required to keep J looking and feeling her best. Now I’m not a grooming slouch but when faced with the actual tasks, I realized that this is tough stuff. Some things I ignore such as anything having to do with razors, some things I outsource to her girlfriends or salons like nails and hair, and the rest I just do my best and try not to embarrass her. I’ve gotten pretty good at creating ponytails. Oh, and I certainly need to mention the craziness of trying to brush and floss someone else’s teeth, and don’t forget the ear cleaning!
  2. Hygiene — Aside from normal grooming activities, women have a unique set of hygiene issues that men are poorly prepared to deal with — I call them the “3 P’s — Pee, Poop, and Periods.” This is the area where, excuse the pun, the rubber meets the road. Remember, J is bladder and bowel incontinent. Men are literally built differently and I, for one, have found it challenging even after 2+ years to know exactly how to deal with it all. The problem is a woman’s anatomy packs too many orifices too close together. Now I am very familiar with female anatomy being a normal straight male and having tended to an infant daughter, but adult feminine hygiene issues are a magnitude more complicated than I expected. There is so much to share about my experiences that I’m determined to explore it all in another post, so I’ll just leave you with two important pieces of advice. First, no matter the mess, wipe front to back! Second, urinary tract infections (UTIs) which are far more common in women than in men thanks to the proximity problem mentioned earlier can make a brain injury patient (or senior) appear to be crazy — yes, they can go from coherent to being on another planet in the blink of an eye. The first dose of antibiotic, once you figure it out, will reset it all to normal.
  3. Dressing — J has a lot of clothes. I am overwhelmed by the volume, the complexity, and the layering of her wardrobe. Thankfully she preferred a simple color pallet so there aren’t many combinations that would be awful. Of course, then there is what goes under the clothes. When I was in high school, I spent a summer working in my friend’s dad’s lingerie business warehouse unpacking bras being shipped in from Haiti. This made me incredibly knowledgable about bras and highly popular with girlfriends and their moms since I could purchase the bras for $10 each. However, when faced with actually putting a bra on a woman on a regular basis, I become a clumsy fool with ten thumbs. The only good news is that I’ve become proficient at how women remove their bra without taking off their shirt. Poor J has such a sorrowful look on her face when I’m fumbling around trying to get her bra on and off. ‘Nuff said. As for the rest of the dressing, I tend to stick to a comfortable wardrobe consisting of short and long sleeve tees, sweat and athletic pants, and shorts and sneakers — a far cry from how J dressed for her past corporate role even when working at home. When dressing to go out, I often rely on one of her girlfriends or my sister to help pick an outfit, deal with jewelry — don’t get me started on pierced earrings — and any finishing touches.
  4. Dining/Drinking — J’s stroke affected her swallow so she has some problems with aspirating liquids. Thankfully, she has no problem with solid food and has a good healthy appetite. When my daughter was an infant, I thought that feeding her was a nightmare. I would inevitably end up covered in baby food, as would she, and uncertain whether enough of it had made it into her mouth. It was a mess. Feeding J makes that look like child’s play. J’s ataxia and motor control issues make it difficult for her to use utensils and she tires quickly after trying to feed herself, so I take over. The first piece of advice is that soup, rice, and spaghetti are not your friends! I’ve tried forks and sporks and spoons and foons(?) but nothing works perfectly and there are many variants to choose from. Luckily, our 85 lb hound dog happily sits with her head in J’s lap waiting patiently for whatever falls. Oh wait, I’ve gotten off track from the theme of what’s makes women different … in the case of dining and drinking it all has to do with mixture and volume. I know a lot about J but I never really kept track of how she likes to eat her food or how much she eats and since I eat a lot and tend to mix all my food together on the fork, I regularly feel like I overfeeding J and mixing stuff together that she would never mix — thankfully, she will correct me at times.
  5. Intimacy — This is the section that has caused me to avoid writing this post for so long, not because I’m embarrassed or modest, but because I honestly don’t know what to say. We haven’t figured out post-stroke intimacy yet — sure, there’s hugging and kissing and hand-holding but venturing beyond that is difficult. I know there’s a desire on both sides but it’s hard for J to communicate what she wants and when — this can be hard even in normal relationships. And then there’s my sense that caregiving and intimacy don’t mix well. I’ve seen a side of J’s daily existence that is hard to push aside. Don’t get the wrong impression, I love and desire J and think she is an amazingly attractive woman. It’s simply that our daily activities are exhausting mentally and physically and it’s not easy to get into the mood. It’s kind of like when you have the best sex on vacation when you’re away from the day to day crap. I’m determined to explore this subject more with J and in future posts.
  6. The Art of Caring – I was brought up in an era when a common belief was that women are natural caregivers and men lack empathetic and tenderness skills. I don’t accept that as I luckily had a father who absolutely tenderly cared for my mother who was plagued with a variety of ills. Make no mistake, there are good caregivers, maybe even natural ones, and there are certainly poor caregivers but the distinction is not determined by gender. People regularly say to me, “this must be so hard for you”, with a tone that makes me feel as if they are actually saying, “you’re a guy, how can you know how to do this?” I sometimes feel the need to defend myself explaining that before all this, I was a self-sufficient person — yes I even iron my own shirts. My advice to both men and women is to not let stereotypes color your view of caregivers. Each has their own strengths and weaknesses.

Well, I think that’s enough for now. I’m sure I forgot some things and I certainly didn’t get into the weeds on some of these subjects, but I’d love to hear your thoughts on these challenges.

What is a Caregiver?

Or how to dedicate yourself to someone else’s support

It makes sense in this blog’s infancy to discuss the definition of a caregiver, especially from my point of view as a male caring for a spouse.

Merriam-Webster defines Caregiver as “a person who provides direct care (as for children, elderly people, or the chronically ill).” Clearly, this is a generic, albeit reasonable,  definition which covers a broad swath of situations. I have had a caregiver role for my elderly parents, my daughter, and now my wife. All three situations are similar in that caring involves tending to the person’s daily needs be they medical, emotional, or spiritual. Caring for your spouse can be more complicated are it puts your relationship, one of choice and not of blood, in a compromised position;

In my wife’s case, she needs assistance with all of the activities of daily living (ADL), Her capabilities change from day to day, even hour to hour due to the nature of her stroke. What she was able to do on her own yesterday such as eating, she may not be able to do today. Each day brings new challenges, progress, and setbacks. Aside from ADLs, she also needs help with speech, reading, swallowing and everything else you can think of. These are not a big burden for me — we will talk about speech more at length in another post — but it all puts a continuous strain on our relationship — mostly due to exhaustion for us both.

Importantly, while J has a network of other care providers such as therapists, who concerns themselves with her physical, behavioral and mental health, I provide the point of coordination and constancy for all of these activities as providers come and go. I am throughout the day J’s psychologist, motivator, therapist, nurse, cook, and sitter, but mostly I am her husband, and that raises issues of intimacy, trust, security, and financial wellbeing. I’m learning that these issues are ongoing challenges, and honestly, at this time I don’t have comfortable solutions for some of them. I intend to write about each at length.

One topic I intend to explore is how to do what everybody tells me to do; that is “take care of myself.” How is really possible to care for yourself when you are so consumed emotionally and physically caring for someone else? Despite the ubiquity of caregivers, our society doesn’t place much value on caring for the caregiver. Sure, there are conferences, websites, even blogs, but rarely does a facility, for example, have a comfortable place (and a cup of coffee) for the caregiver while waiting, or does the home care nurse ask how the caregiver is doing. I’m not whining or complaining — I’m just saying that society has to play a role in helping the caregiver avoid burnout or exhaustion or whatever.

As a caregiver, all I truly want is to be reassured that my actions are having a positive impact on the situation and helping my partner improve, maybe even make her happy. That’s what motivates me every day, and finding that motivator is critical, regardless of your situation as it alone will help you survive being a caregiver.

The Timeline Part I – The Stroke

While this blog is not specific to caregivers of stroke survivors, I think it’s important for you to understand what happened to my wife, what transpired during the first few minutes, hours and months, and where she is now in her recovery. This timeline will help me explain what I’ve gone through over the past 18 months.  One of the major difficulties of dealing with a stroke survivor is that every stroke is different. This is not like treating most other debilitating disorders as every person will be impacted differently, and that means as a caregiver, you not only have to be flexible at the beginning but you must stay flexible as time marches on.

Note: I’m trying to put as much as I can in simple terms but this subject can quickly get very complicated. I’ve provided links that will offer explanations and examples.

Here is a very simplified timeline:

  • Feb 11, 2017, Early afternoon — J’s stroke occurred while she was waiting for our daughter’s karate class to end. She was sitting on a bench, likely reading email on her phone when she collapsed and had a seizure.  Thankfully, the staff reacted quickly and called an ambulance. She was taken unconscious to a nearby hospital, examined, and given a CT scan. The scan showed a severe stroke had occurred in the thalamic region of her brain slightly to the left of center. This type of stoke was determined to be hemorrhagic, not caused by an aneurysm or clot — in other words, a blood vessel just started leaking. These types of strokes only account for 20% of all strokes but they have a very high fatality rate. There is a lot to be learned about this type of stroke and strokes in general, but I’ll save that for another post or two.
  • Same day, mid-afternoon — The neurologist on call quickly determined what had happened which is vitally important in this type of situation. Quick treatment is critical to reducing the initial impact of the event. For example, if J had been home when the stroke occurred and not immediately transferred to a hospital because no one knew this had happened, she likely would not have survived. The neurologist quickly arranged for transport to a regional medical facility that has a world renown neurology department. I first saw J right before she was transferred roughly two hours after the event.
  • Same day, late-afternoon — Once moved to the new facility, J was immediately admitted into the NICU – Neuro Intensive Care Unit. This team examined her, administered some medications to stop the seizures, performed additional CT scans to determine if there was still bleeding activity and how wide an area was affected and developed a preliminary plan for treatment. Importantly, with J’s stroke, the bleeding itself once stopped was no longer a concern. The issue becomes the hydrocephaly that ensues because, in her case, the blood interfered with the normal flow of intracerebral spinal fluid.  The neurosurgery team implanted the first of two external ventricular drains (EVD) that would relieve the pressure inside her skull. J was on a respirator to protect her airway, heavily sedated but showing some awareness.
  • Feb 18 — The first MRI was performed — the results would come later. I started to experience the firehose of information about what was going on coupled with a deluge of questions about J’s medical history and her wishes. First important lesson learned — caregiving starts immediately and preparation is critical. Needless to say, we were not as prepared as we should be — more to come on that in another post. Meanwhile, J was stable and seemingly past the most critical moments, though her future was far from certain.
  • Feb 19 — A cerebral angiogram was normal. This indicated that there didn’t appear to be any vascular malformations — an important thing to determine as it could indicate the prospects of a second stroke. Using different methods (angiography, MRI, CT scans) is important since each reveals a varied view and, in J’s case, a lot of the structures were obscured by the residual blood still filling the cavities in her brain and skull. J continued to show some awareness but was very restless so she needed to be sedated.
  • Feb 20 — An attempt to place a second EVD was unsatisfactory so arrangements were made to do it again in an operating room using neuronavigation which would allow for precise placement. The procedure was completed successfully, and talk began about attempting to take J off the ventilator.

The immediate crisis was over, and J’s chances of survival were getting better every day, however, we had little understanding at this point of the impact of this on her ability to function. The hardest part of the initial timeline was yet to come.

Introduction – The Long & Winding Road

Generic CT Scan
Just a generic CT Scan

Today marks 18 months since my wife’s hemorrhagic stroke in February 2017. She was 49 years old at the time and in perfect health. No warning signs, no symptoms, no family history of stroke, no risk factors.

We had been married only 11 years (both on our second marriage) and had a then 9-year-old daughter. My wife, known throughout this blog as “J” was with our daughter when the stroke occurred.

I’ll provide background on the stroke specifics in a later post but suffice it to say this was a severe event, and and the survival rate for this type of stroke is less than 50%. Nonetheless, J survived and now here we are a year and a half later.

So why start a blog now? Well, first of all, I finally feel like I have some time to spend writing. I want this to be a valuable resource to caregivers, especially male caregivers, I take these blog posts seriously, and that takes time.

Second, I have gained a lot of knowledge since the stroke and now I’m ready to share it. I’ve learned about the medical condition, insurance, dealing with medical providers, therapy, products, technology, and more. I don’t profess to be an expert but I hope to let you benefit from my journey — I intend to provide the resource I wish I had.

Finally, you should know that I’m writing this blog using a pseudonym and intend to keep confidential the names of my wife and daughter to protect our privacy. I will post real reviews, analysis, and links for the products, services, and organizations that I have found useful during this journey. And, while I am targetting this blog towards male caregivers given my unique perspective as a male, I hope that all who find themselves in this role will benefit from the blog.

I welcome your interactions so don’t hesitate to write to me. At some point, I may include a community forum within the site.

–ML