Category Archives: Background

Posts that focus on my personal situation, how it came to be and how it is evolving.

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?

“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

Reducing the Stress of Hiring an Aide

I just hired a new aide to help J. She’s coming twice a week for 4 hours in the morning. She’s (K) is independent (not through an agency), a CNA (Certified Nursing Assistant), drives, and comes very well recommended through a local personal contact. I’m hopeful this turns out to be a good experience for J and for me — this time.

Home Care Aides

I’ve been through multiple attempts at hiring an aide in the year since J came home. My opinion is that mostly they have been more troublesome than helpful — not because the individuals were a problem, but due to the complexities of caring for J and that every aide has a different approach to care. When J first came home, she was on home care which meant that her therapists came to the house, and insurance paid for an aide to come twice a week for an hour. I’m actually not certain what insurance would have paid for since I could never get agreement among the home care agency, the aide and the insurance company. So, we settled on an hour twice a week — in reality, she would only stay 30 minutes during which time she attempted to get J out of bed (with assistance from me) and showered (with more assistance from me) and then she was gone.

I didn’t know any better, and having her here did let me focus a bit on my daughter but, in reality, she just created more stress for me, and J wasn’t that happy either. We went on like this for several months and then I tried to hire an aide to provide longer periods of assistance outside of insurance.

Moonlighting Aids

First, I tried hiring one of the aides from the short-term rehabilitation facility that J had been in before coming home.  I want to be clear that we were not happy with anything about this facility, aside from the speech therapist, and I only considered hiring one of the aides because she seemed competent, J appeared to like her, and her rate was reasonable. We agreed to try one session, and it was mostly a disaster. While she was competent in the rehab setting, she was totally uncomfortable in a home setting. Nothing worked for her — the bathroom was too small,  we didn’t have the right supplies, she wanted to come earlier in the morning than we could deal with and on and on. So, that was the end of that.

Agency Private Placement Aides

Next, I tried using the home care agency’s private placement. This was the most expensive and least flexible of the arrangements costing 10 to 25% more than an independent contractor and requiring a minimum of 4 hours. Initially, I liked the idea of using the agency so when the person was unavailable, in theory, they would be able to send someone else. I also expected better management and training of the individual to deal with the home environment. Neither of these assumptions turned out to be true.

The first person the agency sent was hesitant to enter the house because we have a large dog  who is intimidating due to her loud bark and enthusiasm, but totally harmless. The agency knew of the dog. The aide finally entered and seemed to be comfortable with the dog, but right before the next visit I got a call from the agency that she wouldn’t be back. The next person who came appealed to me, but she and J did not get along. Then, I think we got a reputation for being “difficult” and the agency was unable to find someone who could meet our requirements.

Independent Agency Aides

My next attempt was to use a independent agency that came well recommended by our social worker. The agency, in actuality just a single woman who had a stable of aides she was able to schedule, found someone who could work our preferred schedule, and J and I both loved her. Even the dog was happy! Things were going great for a few weeks and then a miscommunication occurred == I had been looking for another aide to cover a one time need, and had contacted both the private placement agency and the independent agency. I found someone through the private placement agency and let the other person know that we were all set. She misunderstood thinking I meant we no longer needed anyone and reassigned our aide in a blink of an eye — lesson learned; be careful when communicating by text message.

Care.com

So, we were back to square one. The supply of aides through the agencies dried up so I decided to try Care.com, a website service that provides access to caregivers, both independent and through agencies. Care.com lets you enter in information about your requirements and then receive proposals from the caregivers on the site — essentially you are posting a job. You can enter your requirements and review blurbs of the responses for free but, in order to access and respond to the proposals, look at background checks and check references, you have to subscribe. I signed up for the one month subscription expecting that would be all I needed.  I was wrong.

Care.com Pricing
Care.com Premium Subscription Pricing

I’m not going to provide a complete review of Care.com at this time but I will say that I was totally unprepared for what happened next. The number of responses was far more that I expected, and I immediately felt overwhelmed and uncertain about what to do. I did correspond with some of the caregivers and attempted to schedule some interviews, but I wasn’t able to manage this process and deal with my regular daily activities. By this point, I had come to realize that the best person suited to care for J was me, and trying to bring someone else in was causing more stress than necessary. I put the whole aide plan on hold and just focused on providing care myself — oh, and I completely forgot to cancel the Care.com subscription and ended up paying for three months or more at the monthly rate.

Finally, a Solution — Facebook?

After the Care.com mess,  we went nearly a year without any paid help. I relied on occasional help from my sister who lives an hour away, J’s dad who visits from the West Coast, and a couple of capable local friends. It worked because I’m devoted full-time to J’s care having given up nearly all of my part-time paid and volunteer work, and I was getting a lot of support from my daughter’s friend’s parents who were shuttling her to various activities. This past summer, those support networks broke down due to vacations and travel and other commitments. With school having recently started, I felt I needed some regular part-time help again, so I posted a message in a community Facebook group asking for recommendations for an aide.

I got a bunch of responses from people who had aides they would recommend, and after talking to some of these people and evaluating how similar their situation was to mine, I called one woman, highly recommended, who seemed to be a good match — and that brings us back to the beginning of  this post and hiring K. We’re only three visits in and things are going well but time will tell.

In Conclusion

Hiring an aide is complicated! Finding suitable personalities, skills, schedules, and fees can be impossible. The process will vary depending on the age and location of the person who needs care — remember, J is young so I wanted someone with experience beyond elder care. If you’re going to look for an aide, I suggest starting with friends, Facebook or some community forum first, where you can ask for personal recommendations of aides they use. Personal recommendations are not a guarantee of success but they are a better starting place than simply trying to evaluate proposals or resumes. I have much more to say about using aides (as if I haven’t said enough already) but it will have to wait for a later post.

Tell me about you successes and failures using aides.

 

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