Category Archives: Wellbeing

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 hereon 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.

Loneliness Affects Both Survivor & Caregiver

On this Memorial Day weekend when we remember and celebrate the contributions of the countless women and men who have died in service to this country, it’s also an important time to remember those who have survived, and the people who care for them.

A common refrain is that war changes people, and history has shown that when these people try to assimilate back into society after their service, they face isolation, disappointment, and depression, especially when dealing with a disability. A strong multidisciplinary network of medical professionals, social workers, community organizations, family and friends is required to help people through this journey. A network that sadly often breaks down and fails these individuals as evidenced by the increasing and alarming number of suicides among military service-people and veterans.

I don’t have much direct experience caring for current or ex-military, though I did help my dad, a Korean War veteran who passed away in June 2018, manage his later years and his interactions with the Veterans Administration. Dad was an amazingly outgoing and social person through most of his life until my mom died over a decade ago, his health started to fail and his financial situation became dire. He had much in common with others of his generation in his unwillingness to talk about his military experience or his childhood during the Depression and World War II. As he aged, he settled into a disturbingly isolated existence despite the efforts of myself and my sister to keep him active, but he appeared comfortable with this as if he had decided he had done enough during his life and felt it time to simply watch sports, sleep, and eat.

In one of my caregiver support groups, I often hear caregivers lamenting that their spouses or parents who are well into their 80’s or 90’s are doing the same — just lounging through the later (and last) years of their life, and I have mixed feelings about this. I, as I suspect many do, have this vision of being active and vibrant right up to the end — maybe this is what keeps me going, but this needn’t be the only reality. As long a person’s emotional and physical needs are met, who’s to say how they should live their life especially after giving so much for so many years.

But I digress … I see a similarity between what military survivors (and their caregivers) face, and what the survivors of any extraordinary medical event such as stroke and their caregivers face, and that is loneliness.

A traumatic brain injury or cancer or any life threatening event that has lasting implications creates barriers between the survivor and the rest of the world. These barriers might affect communication, physical activity, financial security or more, and may be actual or perceived. The isolation that results takes a person who might have been active, social and self-sufficient, and makes s/he dependent, depressed and lonely. It can literally take a village to break through this and keep the survivor vibrant and engaged. We often see stories on the news of survivors who overcame great odds and rose to great heights — these stories are inspiring and offer hope, but they are also rare, and out of the reach of many.

One of my favorite books, “A Wrinkle in Time” by Madeleine L’Engle tells the story of a family’s battle (along with the help of some cosmic friends) against IT, the Dark Thing that is overtaking the cosmos. IT sucks the joy and happiness out of everything it touches but can be, and is ultimately defeated.

“Suddenly there was a great burst of light through the Darkness. The light spread out and where it touched the Darkness the Darkness disappeared. The light spread until the patch of Dark Thing had vanished, and there was only a gentle shining, and through the shining came the stars, clear and pure.”

I propose that IT is in part, loneliness and isolation — the loss of the feeling of community and belonging with the people around you. This survivor’s black hole pulls others into in like a gravitational force — the first to succumb may be the caregiver(s) who find life increasingly disrupted. I knew when J first had her stroke there would be an amazing outpouring of compassion, concern, assistance, and love from our friends, family and community, and there was just that. I also knew that over time this would wane as people got caught up in their own lives and time marched on, and I tried to proactively discourage too much help early on as I expected it would more beneficial one or two years later when the battle was still going on. I was trying to avoid the fatigue that inevitably sets in after disasters be they national, communal or individual. Certainly there are those friends and family who have provided ongoing support and encourage through J’s saga, though this circle has shrunk significantly over the past two years as our new reality has settled in — to no one’s fault, as I’ve said repeatedly J’s battle is a marathon, and not everyone is equipped for the long haul.

So what can the average person do to help? I believe the answer is simple whether we’re talking about a veteran or some other type of survivor, and it doesn’t require money or much time or even a casserole. The answer is best expressed (surprisingly) by this 1980’s AT&T commercial refrain and song most memorably sung by Diana Ross:

Reach out and touch
Somebody’s hand
Make this world a better place
If you can

Take a little time out of your busy day
To give encouragement
To someone who’s lost the way
(Just try)
Or would I be talking to a stone
If I asked you
To share a problem that’s not your own
We can change things if we start giving
Why don’t you

Reach out and touch
Somebody’s hand
Make this world a better place
If you can
Reach out and touch
Somebody’s hand
Make this world a better place
If you can

If you see an old friend on the street
And he’s down
Remember his shoes could fit your feet
(Just try)
Try a little kindness you’ll see
It’s something that comes very naturally
We can change things if we start giving
Why don’t you

Reach out and touch
Why don’t you (Why don’t you)
Reach out and touch somebody’s hand
Reach out and touch
Somebody’s hand
Make this world a better place
If you can

Songwriters: Nickolas Ashford / Valerie Simpson
Reach Out and Touch (Somebody’s Hand) lyrics
© Sony/ATV Music Publishing LLC

Have a great Memorial Day weekend and take a moment to reach out to someone struggling against the Dark Thing!

“Why Can’t I Die?”

Amazingly, the short break I intended to take back in October to recharge for the new year turned into a five-month hiatus. Now I’m back, not so recharged, but determined to blog on, and anxious about embarking on this restart with the difficult topic of death, or, to be specific. the question of what do you do when your spouse, or the person you are caring for, express the desire to die.

First, let me remind you that I am neither a doctor. lawyer or psychologist, and that the opinions and suggestions expressed here are singularly my own. For this particular circumstance, I urge you to seek professional help — even call a suicide prevention hotline if you must, as expressions like this should always be taken seriously. That said, given my wife’s physical limitations, there’s little chance of her being able to act on her desire on her own, thus giving me time to ponder the topic.

J is not a person prone to depression. She used to wake up early every day with a smile on her face, energy in her step, and optimism about the day. That’s not to say she didn’t have bouts of depression, as we all do, but she was generally a positive person. Since the stroke, her demeanor has been mostly flat with only an occasional shortlived smile, laugh or outburst of anger. She hasn’t been able to describe how she normally feels beyond just saying, “I don’t know.”

The depression became evident around the first anniversary of her stroke when she appeared to “suddenly” recognize the severity of her disability. It became more severe a day or so after she enjoyed the company of family or friends or a special event. Her 50th birthday party bash, 13 months after the stroke, prompted the first time I heard, “Why can’t I die?”, a few days after the party. I was caught by surprise, and I know my response was inadequate and unpolished — simply, I explained to her that she was deeply loved by me, our daughter, her family, and friends, etc., and that she had made tremendous progress since the stroke, and the future was bright as long as she stayed motivated and worked hard at therapy, and blah, blah, blah. All of this was true and heartfelt, and may have reassured her a bit, but, by no means, did it put the subject to rest — excuse the pun.

Over the course of the following year, the topic came up several times again, often after her being reminded of her current limited state. As her progress slowed, which was expected, and she had a particularly bad month set off by a urinary tract infection, her despair became deeper, her energy waned, she lost weight, and she was losing hope. (Urinary tract infections are a nightmare, so much so that I will devote a post to them at a later date.) With the help of her psychologist, neurologist and physiatrist, we attacked the problem with a slight modification in her medications — not the anti-depressant she had been on since leaving the hospital — hoping to increase her energy level. That change coupled with a lot of talking got her through this dark period, but again, we all knew this would be a continuing problem for her, and for me.

J and I didn’t have any living wills or medical directives but we had talked about how we would want conditions to be treated if needed. When I learned of J’s stroke and spoke to the Emergency Room neurosurgeon, steps had already been taken to improve her chances of survival, before I had an opportunity to assess the situation. In hindsight, knowing what she has endured since the stroke, I tend to think that if I had understood the severity of the injury right after the event, I would have just let her go, but I’m not certain I could have followed through with it. There were a few instances, such as weaning her off the respirator, or when the shunt was implanted, that I might have been faced with that decision again, and in those instances, I think I would have found the strength to let her go if the alternative meant ongoing life support or other situations we had discussed previously, but she passed those trials, and no one knew for sure what the future would hold as far as the extent of her recovery. While the medical team and I were initially hopeful, I was reminded by them repeatedly that it would take 18 to 24 months to fully understand the extent of the damage and the potential for repair.

So here we sit 25 months later, and J asks me, “Why can’t I die?”. I suppose the factual answer is “because society doesn’t allow it” … despite all of her impediments, I think she knows that, so the question she may actually be asking is, “What do I have to live for?”, and that question is much easier to answer, in my opinion. As limited and frustrated as she is, she can still enjoy life, find new meaning and satisfaction, and participate in the rearing of our daughter, if she has the will to do it. I keep feeling that if she can only regain some of her independence, be it walking or eating or speaking, then she is truly on the path to recovery, and I’m determined to help her get there with continued therapy and encouragement, seeking out new technologies that she might benefit from, and helping her brain to relearn what it has lost.

Ironically, I’m the one who has battled severe depression throughout my life, and it follows me like a shadow now through all of this, but I fight it back minute by minute in order to keep J and our daughter safe and happy. The worst time for me is after everyone has gone to sleep and I sit down for some “me” time — I think the pressure of the day just overwhelms me and drives unhealthy behaviors like binge eating and not getting enough sleep. I’m cognizant of this and working to control with the help of therapists, family, and friends. Interestingly, when I start to lose hope, I think back to the 1980’s Sandra Boynton poster, “Don’t let the turkeys get you down!” I’m not sure if she originated this phrase that is supposedly based on Illegitimi non carborundum, mock-Latin aphorism possibly read as “Don’t let the bastards grind you down”. I simply picture the image and it makes me laugh, and laughter is truly the best medicine. I hope you laugh too!

DontLetTheTurkeys

 

 

 

7 Tips For Male Caregivers (or Not)

Caregiver.com published a post titled “7 Emotional and Physical Well-Being Tips for Male Caregivers” in June 2017. I wouldn’t usually comment on something over a year old unless it was timeless, and I’m certainly not criticizing the author, but I was struck by the extended negative comment this post received written by “Paul”.

Here are the 7 tips quoted from the post:

  1. Participate in a support group.
  2. Vary the caregiving responsibilities among family members or friends.
  3. Exercise on the average of three times per week and maintain a healthy diet.
  4. Establish time for meditation.
  5. Practice time management.
  6. Prepare all necessary documents, i.e.: insurance policies, deeds, loans and funeral arrangements.
  7. Stay involved in hobbies.

I am regularly advised, as I am sure you are,  by friends, family, and medical practitioners to be sure to take care of myself. This “advice”, sometimes very generic, and sometimes very specific (meditate, take these supplements, become vegan, run marathons, and so on) has become my “Sword of Damocles” hanging over my head, always reminding me that my life is at risk, and so are the lives of those I care for.

What has become an admonition is growing tiresome. I know all of the perils I face — I know them all too well. What I need are not “tips” … what I need are solutions! And for this reason, I felt Paul’s pain and frustration.

I’d also like to note, and this is a bit of a critique of the post, that the seven tips are in no way specific to men regardless of the post’s title. This tips, which are all valuable, apply equally as well to female caregivers, and that may be part of Paul’s and my reaction.

Now, if you are expecting me to offer the answer to it all right now, you will be disappointed. Afterall, that I why I started this blog so that we can discover the answers together. If I knew how, or maybe more accurately, if I were able to take care of myself, then I wouldn’t feel so stressed, exhausted, anxious, frustrated, sad, overwhelmed, and achy. I would wake up everyday with a positive attitude, well rested, full of energy and enthusiasm, and looking forward to the next problem so I can develop the next solution — well, at least that’s how I think it would go.

All of the 7 tips are on my ToDo list, and I’ll get right on them after I deal with all the other things I was expecting my part-time aide to do this morning, who unexpectedly didn’t show up. Every day is a new adventure. What’s on your ToDo list for maintaining your physical and emotional well-being?