intention

Other than One-Liner Wednesday and Stream of Consciousness Saturday, I don’t usually follow the Just Jot It January prompts, but today’s prompt is “intention”, which sparked my interest. If the prior sentence makes no sense to you, you definitely need to visit Linda Hill’s blog, Life in Progress, and check it out!

It was my intention to try to re-organize my life after so many changes in 2019.

Or maybe I should say “organize,” given that I can’t actually remember the last time I felt that my life was organized.

This is definitely not the first time I have felt that I should (re)organize. In truth, I have had multiple junctures in my adult life – when my daughters started school, or moved away from home for higher education or work, or when Grandma moved nearby and we weren’t trooping back to Vermont so frequently, etc. etc. – when I thought I would re-organize and have a schedule and maybe make progress on long-term goals.

Somehow, it never quite worked out.

I know that this sounds like either an excuse or a complaint, but it is not meant to be either.

It is a recognition of the vicissitudes of life and how priorities need to be reshuffled to meet a new challenge. I chose to prioritize caregiving over other possible activities – and caregiving is seldom a follow-the-schedule sort of thing. Unfortunately, my extended family has suffered an unusually large number and variety of diagnoses, some of which took years to pin down and some that are difficult to treat. I’ve spent time supporting friends who have had cancer and died at a much younger age than we had hoped. I’ve spent major amounts of time volunteering to address emerging community needs.

These choices were all intentional, but they meant postponing or jettisoning personal goals. There were times earlier in my life when I thought I would have my musical compositions published and might return to paid work as a church musician. Circumstances, including orthopedic problems and a crisis that tore my church community apart, intervened and those dreams disintegrated.

Serendipitously, my music losses made room in my life for more writing, albeit in a somewhat haphazard way. My blog and my poetry have shoehorned themselves around major caregiving challenges in the twenty-teens. My dreams of submitting poems for publication on a regular basis and of having a book in print by sixty turned out to be unattainable. I suppose the book part is still a possibility, but it is unlikely because now, at 59, neither of my poetry manuscripts is currently in shape to submit.

Which circles me back to my intention to organize my life…

It is true that my caregiving activities are lessened now, but they are still there and somewhat unpredictable. Something that I have said often over the last few years is also still true; sometimes, the problem is not so much lack of time as lack of brainpower. I definitely can carve out more time for writing now, but I don’t necessarily have the brainpower to do it effectively.

I’m tired.

I guess that, sometimes, when you have run on adrenaline and/or cortisol for a long time and then you stop, your mind and body don’t just jump back to normal function. (I’m not sure that this is medically true, but it is my current way of understanding how I am feeling.)

A week ago, while writing for Stream of Consciousness Saturday, an idea floated to the surface that has kept coming back to me. Perhaps what would be most useful right now is not a schedule, but a sabbatical.

I had intended, early this year, to do revisions on a few individual poems and to assemble my chapbook manuscript for critique by my local poet-friends, so that I could submit to contests and publishers in the spring.

Now, I am feeling that I should not put that pressure on myself.

Maybe I will rest for a while and then feel rejuvenated and creative and I will be able to work on it.

Maybe I won’t.

I just feel too tired to force the issue.
*****
Join us for Linda’s Just Jot It January! You can follow the prompts or not as you wish. Find out more here: https://lindaghill.com/2020/01/05/daily-prompt-jusjojan-the-5th-2020/

Hospice month

November is National Hospice and Palliative Care Month in the United States. Some people don’t realize that palliative care exists outside of the context of hospice. Palliative care addresses pain that affects someone from any cause. People who are dealing with chronic or severe pain can consult with a palliative care specialist, who will put together a pain management plan for them. Hospice care involves palliative care for those in their final weeks/months of life.

While the alleviation of pain is an important part of hospice care, hospice is meant to serve other needs for the person who is dying and their loved ones. There are social workers and chaplains for help with personal, social, and spiritual needs. Aides help with physical care and companionship. Volunteers come to keep the patient company or offer special skills, such as massage, to relieve pain and stress. Nurses are the driving force that coordinates care. They visit as often as needed as circumstances change.

Hospice as a philosophy is meant to unfold over the final weeks and months, but sometimes is only called in for the very last days. For decades, hospice care providers have been advocating for referrals to be made enough in advance that there is time to develop a relationship with the patient and their loved ones, so that they can provide services while the patient is still able to interact. There are, of course, instances in which that is not possible, when an accident or final illness occurs without notice, but it is still unfortunately common for primary care physicians and specialists to delay hospice referrals.

We experienced such a delay with a family member, so that hospice was only called in for the final day. Even though time was brief, the experienced nurses were able to give us the tools we needed to relieve pain and recognize the progression of symptoms when our loved one was near death.

Our experience with Nana was on the other end of the spectrum. She was under hospice care for fifteen months, was decertified and off hospice for four and a half months, and back on for her final ten weeks. Some people commented to us that we had called hospice in too early, but that wasn’t really the case. Without hospice care, Nana would have died much sooner. At least twice, they were able to treat symptoms that would have caused fatal repercussions, had the hospice nurses not been able to get them under control.

It is true, however, that there are a lot of rules, especially with insurance, about hospice care. Those rules are set up for people who have a fairly accurate life expectancy estimate, such as someone with late stage cancer or kidney failure. With something more unpredictable, like certain types of congestive heart failure or pulmonary disorder, the hospice rules requiring a certain amount of decline over a given time don’t fit very well. I hope that, over time, the rules will be changed to make hospice care more accessible.

As National Hospice and Palliative Care month comes to a close, I salute all the compassionate nurses, aides, volunteers, social workers, chaplains, and administrators of hospice. You help people at one of their most vulnerable times. I wish you the strength and peace needed to continue in such important work.

IC Awareness Month

September is IC Awareness Month, so, as someone living with IC, I am doing my part to spread awareness.

IC stands for interstitial cystitis, which is also known as bladder pain syndrome or hypersensitive bladder syndrome. Symptoms, for most, include pelvic pain or pressure and increased urinary frequency/urgency. It affects millions of people in the US and millions more around the world, although estimates of prevalence differ. Part of the reason that statistics are hard to come by is that many people see multiple doctors for years before they are correctly diagnosed. This delay is further exacerbated by the fact that IC is more common among women. As with other ailments among women, some patients have been told their symptoms are “all in the their heads.”  Others have been misdiagnosed with reproductive system problems. Among men with IC, the misdiagnosis is usually chronic prostatitis.

Another problem with getting a correct diagnosis is that there is no definitive test for IC. One subtype of IC, accounting for about 10% of cases, causes lesions in the bladder, which can be seen during cystoscopy, but the other types do not have that straightforward a presentation. Diagnosis is also complicated by the fact that no one knows what causes IC. It behaves somewhat like an autoimmune disorder and also seems to be related to the nervous system. Research is ongoing. Many patients with IC also have periods where the symptoms flare up and other times when they are lessened or absent. This can also be a factor if you have a long wait to see a specialist; your symptoms may have disappeared by the time of your appointment.

I have one of the subtypes of IC in which its symptoms occur in conjunction with other pain syndromes, such as irritable bowel syndrome, endometriosis, and vulvodynia. This can complicate treatment because there are so many different factors involved. Some people with IC, like me, have success with medications. Once symptoms have calmed down, the medication regimen may be ended and other methods, such as dietary changes and stress reduction, may be able to avert flares or, at least, keep them manageable.

One of the things that I need to avoid is acidic foods. I do have a dietary supplement that helps with eating acidic foods, including fruits, although I still avoid citrus. When I make tomato sauce, I put in a bit of baking soda to counteract the acidity. Bonus: it’s fun to watch the sauce foam and bubble! It can be difficult to find things to drink beyond water and milk. I never was a coffee and tea drinker, so I didn’t have to worry about giving those up. I can’t have anything carbonated, so no sodas or sparkling water. (Some people with IC can drink certain varieties of coffee, tea, and soda; sometimes, trial and error is needed to figure out what works for an individual.) My new splurge drink is Hint, fruit-flavored water without added sweeteners or calories. It’s fun to have another option.

The most difficult thing for me to avoid is chocolate. I can have white chocolate, although I need to shop carefully as some of it is just bad. It is the cocoa component that is the culprit with IC, causing a histamine reaction in the bladder. I admit that I miss milk and dark chocolate, and, especially, hot cocoa, which I used to make with cinnamon and ginger. Every once in a while, I will eat a bit of chocolate. I’ve found if I eat just a little, I can manage the flare that will follow, but usually I am good and avoid it completely.

If you think you may have IC, bring it up with your doctor. My doctor recommended that I see a urogynecologist, who was able to diagnose and treat me properly. There are treatment options out there, which differ depending on the subtype of IC you have. Some types are able to be cured with the right therapy, while most others can learn to treat and manage their symptoms.

Don’t let anyone tell you that your symptoms are all in your head! Don’t try to self-treat because of embarrassment or other factors. You can find more info about IC from the Interstitial Cystitis Network, which is one of the sponsors of IC Awareness Month, or from reputable medical websites.  The stress of feeling alone with your illness can make it even worse, so reach out.

One final thought:  Please keep in mind that IC and many other illnesses are invisible. This does not mean that they aren’t causing pain or other symptoms. Just because someone “looks fine,” doesn’t mean they are fine. If someone you know has or may have an invisible illness, treat them with kindness and understanding. Help them find the medical help they need. Support them as they deal with their illness. It will make a difference in their lives.

 

JC’s Confessions #4

On The Late Show, Stephen Colbert does a recurring skit, now a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.
~ JC

In the months that my mom was in the skilled nursing unit, she had a couple of neighbors who used to shout out “Help me!”over and over to anyone passing by their rooms. There were also a handful of residents who would occasionally wander into her room and mistake my dad for their husband or me for a daughter or a staff member.

It was hard for me not to get annoyed sometimes, even though I knew that these other residents were ailing and exhibiting dementia symptoms.

As I reflected more about this, I realized that my reactions were tied to feeling helpless. I couldn’t help what was happening to these other residents and I couldn’t help what was happening to my mom.

As a caretaker, one is always trying to make things better. It hurts when that isn’t possible.

Nana

I have often written posts about my parents, known here as Nana and Paco. I’m sad to tell you that Nana passed away last week. After months of declining health due to congestive heart failure, she had a few days of rapid decline and died peacefully with my older sister with her and the rest of the family able to gather quickly for some final time together with her.

Over these last few days, my sisters have been staying at Paco’s apartment and taking care of him, while my spouse B and I have been tending to preparations for the funeral, which will take place mid-week.

We are very fortunate that this week is a week off for my son-in-law L, who was able to fly here from London to be with daughter E, granddaughter ABC, and all of us.

I admit that my mind has been richoting from one subject to another. Now that the funeral plans are all in place, I’m hoping I can calm my mind a bit, but it remains to be seen.

With so much happening, I’m not online very much, so I may not be able to keep up with responding to comments. Please know that I appreciate all the thoughts and prayers that you send on behalf of Nana and our family.

In peace,
Joanne

hospice again

After posting every day in January, I haven’t been posting very much since. Unfortunately, my mom, known here as Nana, over the last few weeks has had increasing symptoms from her congestive heart failure. We have been able to ameliorate some of them, but she is sleeping more and eating less, having more trouble walking and getting short of breath more frequently.

Last week, Nana was approved to go back into hospice care. They will become part of her care team at the skilled nursing unit, so she won’t need to move again and so my dad can hop on his scooter and visit her whenever he likes. [Backstory is that Nana was under hospice care for fifteen months and then de-certified in October. She moved into skilled nursing at their continuing care community, as she could not stay at Mercy House, which is only for those in hospice care.]

We are hoping for as much pain-free and alert time as we can get in these coming weeks. Thank you for all the positive thoughts and prayers you have sent. They help us to stay grounded in this difficult time.

SoCS: the reason for yawns this week

I have been yawning more than usual this past week.

Last Saturday night, daughter E was lying beside granddaughter ABC, reading her a bedtime story. ABC was having a drink of water from her covered tumbler and, in her excitement, hit her mom in the eye with the bottom of the tumbler.

E called for me and I rang into the room. Her eye was already swelling, so I got her an ice pack and calmed ABC down and got her to sleep.

E had been hit hard enough to see stars and lose her vision in that eye for a moment, so we weren’t surprised when she had a headache the next day. And the next. But then, she started to feel dizzy a lot and get nauseous. I was afraid she had a concussion, so we went into the doctors’ office. It turns out that the symptoms of concussion are very similar to the symptoms of bleeding in the orbital socket, which has a lot of nerves that are very sensitive.

The treatment is also similar to concussion: rest, quiet, avoiding activity and eye strain and loud noises, taking pain relievers, not lifting heavy things.

None of which is inherently easy with a toddler in the house.

It turned into everyone else in the house taking over as much of ABC’s care as possible.

Which brings us to yawning. I have been taking over the nighttime care, sleeping on the couch on the first floor rather than in my room on the second floor. ABC is a pretty restless sleeper, so I would go into her several times a night to cover her or sing her a song or read her a book to get her back to sleep. When my husband B would come down between 5:00 and 6:00, I would sneak back upstairs for another couple hours of sleep, but I admit that I have been tired and, thus, yawning a fair amount during the day.

Last night, ABC didn’t wake up at all, so I got to sleep for a long stretch myself, which was nice and resulted in much less yawning today.

Let’s hope it is the beginning of a trend.

(By the way, E is improving, so there is some hope that she will be able to be more active soon.)
*****
Linda’s prompt for Stream of Consciousness Saturday this week was to write about the first thing we thought of after reading the word “yawn.” Join us! Find out how here:  https://lindaghill.com/2019/02/15/the-friday-reminder-and-prompt-for-socs-feb-16-19/