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.

 

1000 followers!

Today, I reached 1000 followers!

And, yes, usual caveats of how followers does not equal readers, and some people are counted twice if they follow by email or on WordPress and also like or follow my Facebook page, etc.

This does give me an opportunity to thank all the visitors to Top of JC’s Mind, whether you visit once or often, follower or not, commenter or not.

For the record, 1,023 posts since the first on September 13, 2013. I know many bloggers would find almost five years to reach 1000 followers unconscionably slow/lazy/unacceptable, but I am more shocked to have made it this far. I am not one to check stats very often. Or someone who has been able to blog the “right way.” While I have had periods of diligently reading, commenting, and following other blogs both for edification and to garner more readers myself, as life has gotten more complicated, I have had to concentrate on posting myself and haven’t even been able to do that as consistently as I would like.

All this makes me that much more appreciative of my readers, especially the handful that have reached out and told me that it is all okay, that they believe I am worth waiting for. So, I will keep blogging, however imperfectly, with your encouragement.

With thanks,
Joanne

a move for Nana

On May 4th, my mom, known here at TJCM as Nana, moved to Mercy House, a residence for people under the care of our local hospice. She had been under the care of hospice since last summer, staying with Paco in their independent living apartment with the help of family and aides, first for overnight and later during the day as well. As her symptoms from congestive heart failure worsened and she became weaker, the care needed to keep her safe and comfortable was outstripping what home aides are legally allowed to provide, so, when space became available at Mercy House, we chose to make the move.

Of course, there has been an adjustment period with new caregivers and routines and food, but things are settling in now. The staff all share a calling and commitment to this work, as do the many, many volunteers who make Mercy House such a peaceful, loving place.

My younger sister was here for the first week, helping Nana to settle in and staying overnight with Paco at the apartment. As it happened, on the one week mark at Mercy House, granddaughter S finished her semester at college and came to visit. She used her dorm room decorating skills to hang pictures for Nana and my sister, her husband, and S had an early Mother’s Day/Nana’s birthday lunch brought in from a favorite restaurant.

from Nana's room in Mercy House
part of Nana’s wall decorations

This second week, someone from my house has been staying overnight and we are developing a rhythm to our days. Nana and Paco each do their early morning routine in their places of residence and then, mid-morning, we bring Paco to Mercy House for the day. Like hospice, Mercy House’s mission reaches beyond care of the individual to care of the family, so the volunteers and staff help Paco, too. There is always food available in the common room and Nana and Paco eat supper together at the dining room table, which is special after so many months of eating on a tray table in the apartment living room.

At the moment, Nana is the only resident who is able to be that mobile, so Nana and Paco usually have the dining table to themselves, but it also means that we were able to have two dinners this week that my spouse B, daughter T, and I shared, too. On Monday, we brought Swedish meatballs, made with the recipe that Nana used which had come to her from her Swedish landlady 55 years ago, for a belated Mother’s Day dinner. Last night, we brought in Italian food and an apple-blackberry pie that B had baked to celebrate Nana’s 86th birthday. The volunteers had decorated the table with a centerpiece, special napkins, and a birthday hat for Nana!
Nana with birthday hat

Next week, my older sister will arrive for a week. We are all grateful to have so much love and support surrounding us.

Thank you also, dear readers, for the thoughts and prayers that you have been sending and for your patience with my increasingly haphazard postings. I truly appreciate your visits and comments here.

on being a violet

Since writing this post, I have been receiving lots of support, advice, and encouragement. This trend is continuing with today’s daily meditation from Richard Rohr.  A quote:

Thérèse of Lisieux (1873-1897), an unschooled French girl who died at age 24, intuited the path of descent and called it her “Little Way.” She said (and I summarize), “I looked at the flowers in God’s garden and I saw great big lilies and beautiful roses, and I knew I could never be one of those. But I looked over in the corner and there was a little violet that nobody would notice. That’s me. That’s what God wants me to be.” [1] Thérèse knew that all we can give to God is simply who we really are; or even better, “To do very little things with great love,” which was her motto. [2] That’s all God wants from any of us. It’s not the perfection of the gift that matters to God; it’s the desire to give the gift that pleases God.

I love violets…

finding hope in impossible times

I had hoped that my next post would be about ABC’s baptism and the family visits around that, but I haven’t been able to get organized to write it.

There has been a lot going on and a lot swirling in my head, so maybe this post will help…

My parents raised me to always do my best. I was fortunate that my best generally also stood me in good stead in school and in life experiences, as I juggled my various roles and tried to do good in the world.

When my children were young, there was a book about being a “good enough” parent. I remember bristling at the concept, because I was geared to be a “best I could be” parent – and daughter, spouse, sister, friend, citizen, Catholic, volunteer, committee member, musician, person.

The current roster of roles now includes grandparent, blogger, and poet.

And it doesn’t feel as though my best, even when I am able to muster it, is good enough.

Not even close.

With my mom in hospice care and granddaughter ABC in residence, there has been massive re-prioritizing, which is necessary and good and understandable. Some things in which I was accustomed to being very active, such as public policy and social justice advocacy, have been sharply curtailed, unfortunately at a time when my country is coming apart at the seams. I am keeping some of my poetry and blogging activities going, but in a scattershot way as I have time/brainpower available.

(It is not especially helpful to have Facebook reminding me how many days it has been since I posted to the Top of JC’s Mind Facebook page.)

I think, though, that the root of the problem is that nothing I do, whether it is my best or not, can change the fact of the mounting losses. Illness and decline and death and people moving away and rejection and running out of time and all manner of losses, anticipated or unforeseen, will keep happening, no matter what I or any of us do, think, or philosophize over.

And, yes, I know circle of life and faith and recommendations to take care of myself notwithstanding, some days are just difficult to get through without tears.

Sometimes, those days with tears string together.

I am blessed, though, with people who bring me as much support and comfort as they can when I am struggling. B to talk with and give me hugs. The warmth of ABC snuggling in my arms. E and L to step in and make dinner when I can’t wrap my head around the concept of eating, much less shopping and cooking. My sisters with calls, notes, and visits. Friends who are sending thoughts and prayers and who understand my sporadic contact.

Earlier this week, I was looking for a bell for Nana to use to call her nighttime aide. Unsure where to look, I went to a dollar store near the pharmacy where I was picking up one of Nana’s prescriptions. I don’t often go to dollar stores, so it was a bit difficult to figure out where to look. I had started to check out some possible aisles when I heard the unmistakable sound of a bell. I followed it to find a girl carrying a little bell toward the checkout where her grandmother was waiting for her.  I waited until they had finished their transactions and asked where they had found it. (The grandmother told me that the bell said “Ring for Beer” on it and that they were getting it for a beer-loving dad.) The girl cheerfully led me through the store to the shelf in the gifts aisle that held the bells. I thanked her. I chose a bell that said “Ring for Service” on it, paid $1.08, and brought it up to my mom’s, who was surprised that I had been able to find a bell so quickly.

(Feel free to insert your favorite It’s a Wonderful Life, serendipity, answer to prayer, etc. thoughts here.)

For me in that moment, it was a reminder that hope and help can appear unexpectedly in the midst of sadness and confusion and uncertainty.

I just have to listen and allow myself to be led.

 

 

One-Liner Wednesday: Thanks

Sending thanks to all those who have been keeping my mother Elinor in their thoughts and prayers; she is due home from NYC tomorrow with her new heart valve and a bonus pacemaker.
*****
This sequel to last week’s One-Liner Wednesday is brought to you by Joanne, with additional thanks to Linda. Join us for One-Liner Wednesday! Find out how here:  https://lindaghill.com/2016/10/19/one-liner-wednesday-presidential-poop/

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