Category Archives: hospice

Six Blankets

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Six Blankets

I’m fighting a quiet battle within myself. Some might call it depression, I hesitate to use a label. A sad awareness is wrapping itself around me like a blanket which I keep shrugging off. It’s the state of the world and the sad stories that swirl around me like a thin fog that clings low toward the ground. I’m able to go about my day and do what needs to be done with the added presence of my unwelcome shadow.

Yesterday I went to a luncheon for hospice volunteers. I’ve been a hospice volunteer for a decade. I provide respite for caregivers of terminally ill people. I know that sounds depressing in itself….honestly, it’s rewarding work. After the lunch volunteers are asked to take blankets to patients on hospice. The blankets are crocheted by generous, kind souls that enjoy their craft. I volunteered to deliver six blankets to patients that share my zip code.

Each blanket is paired with an index card with pertinent information about the intended recipient. Name, address, phone number and helpful hints like the neighborhood name or the patients age. It’s recommended that you call the families first to see if they want to accept the blanket.

I made 6 calls and I got mixed results. Mindful with each call that this family is suffering on some level. It is impossibly hard to watch someone you love die before your eyes. It’s also an incredible gift to have some notice about the situation. Words can be spoken that otherwise might be left unsaid. I try to approach each communication with a blend of compassion and lightheartedness. I don’t want to add to the melancholy nor do I want to be overly cheerful, it’s a balancing act.

First Blanket – I left a message explaining that I had a crocheted blanket as a gift from hospice and left my phone number. I haven’t heard back which isn’t unexpected, they have a lot going on.

Second Blanket – I spoke with someone on the phone and they said sure drop it off.  I headed over after I picked my kids up from school. After ringing the doorbell, I  was told to come in. This is common. People are so busy caring for a terminal person they often leave the door unlocked for scheduled deliveries, home health aids or visitors. I handed the blanket to the caregiver and smiled and waved to the patient as I let myself out.

Third Blanket – My kids are still in the car, these are local deliveries. This was a house I was familiar with having just sat with the patient last week. They had a screened in porch so I left the blanket nestled on a chair and let myself out. I spoke with the caregiver later that evening and he thanked me for the blanket.

Fourth Blanket – Someone answered the phone when I called and gave a reluctant OK to the blanket. I don’t know if I spoke to the patient or a family member. The property was stunning with an Old World European curb appeal. This was a house with multiple doors which happens quite often. I chose a door which had a wreath on it, it was not answered. I channeled my inner MacGyver and fastened the blanket to the wreath with little more than stubborn determination. I took the kids home after this, our third, delivery.

Fifth Blanket – I spoke with the patient’s daughter on the phone. She sounded tense on the phone and promised to call me later. She left me a long voicemail this morning. She apologized for being curt on the phone (she wasn’t) and went on to say how hard it was to speak at work and what it’s like having a father on hospice. She was unsure if the blanket would be a welcome addition and I felt bad for adding to her burdens. She was a jumble of emotions and I’m still thinking of the best way to follow up.

Sixth Blanket – This was actually the first call I made and it gutted me. A composed gentleman answered the call and very graciously declined the blanket. He stated that the patient (perhaps his wife?) got one at chemo and there is just so much stuff around the house. I can vouch for the stuff – every hospice patient has a table full of items to keep them as comfortable as possible. Pain medications, body lotion, mouth wash, adult diapers, towels, wipes and an assortment of personal items. Things that would normally be kept in a bathroom or bedroom migrate to the kitchen or dinning room table. Most patients reside in a hospital bed in the living room of their home for convenience and to avoid isolation.

Prior to making the call, I put the address in my GPS. Then it dawned on me that this patient is half a mile from my home. The proximity was unsettling, more disturbing was the age, 58. That is young. I can count the difference in our age on my fingers. My mind takes this information and then I wonder if we have crossed paths. Does she have children? Do we shop at the same stores? Have I encountered this person at some point in our day-to-day lives? This patient, the one whom I will likely never meet…..she’ll stay with me. I’ll think of her when I drive past her house and I will say a silent prayer for her and her loved ones.

This is the shroud I wear from time to time. The memories of visits that I’ve had with patients that have passed. Thoughts of neighbors that I don’t know personally and yet I have some intimate knowledge of their situation. It’s profound and sad and somehow complete. This is the circle of life, a common path we are all on despite our attempts to deny it.

Death is the one universal truth. We will all die, each one of us. It doesn’t matter how much money you have, who you voted for, what country you’re from or what you believe in. Death doesn’t discriminate it comes for everyone. Everyone. So don’t be petty, hateful, hold grudges or act out of spite. It’s just a short ride on this spinning globe and then, who knows what’s next. I plan to use my time wisely with compassion, humor and then more compassion because that’s what we need. And somehow, by sharing these thoughts, my foggy companion has faded away.

 

 

 

 

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Last Call

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Last Call

I encountered a situation yesterday that was a first in my ten years as a hospice volunteer. A couple of days ago the Volunteer Coordinator sent out an email asking for a volunteer. She gave a summary of the case including the town, first name of the patient and a description of the requested visit. The patient was in my town so I responded immediately that I would like to help this family. The next day a secure email was sent to me with the patient name, address and contact information.

Last night I called the patient’s wife to schedule the visit. A woman answered the phone and I asked if it was Helen, my contact. “No”, the shaky voice replied. I explained the reason for my call and a slight sense of dread was building. “No need to visit, he died about an hour ago. He’s still on the floor waiting for the funeral director to get him.” I could hear the tears in the voice on the other end of the phone and then it clicked, I know this person.

“Jan, is that you?” I asked, sure that I knew the person on the other end of the line. “Yes” she replied. I gave my full name, said how sorry I was and asked if there was anything I could do in that moment. There wasn’t anything to do, except to express my deepest condolences which is what I did. She thanked me for the call and we said good-bye.

I could picture my acquaintance on the phone. Tears, that keep coming when you think you’re all cried out. I could feel her concern for her newly widowed mother. I wondered if she ate dinner or if she would sleep over her parents home to ease the adjustment of that awful first night. I imagined a fitful night with not much sleep, except for an hour or so when the emotional exhaustion just overwhelms your body and forces you to rest despite your mind’s best efforts to keep you up. I could sense the headache, the nasal congestion and the scratchy throat, remnants of many tears shed. I felt her grief and I took a little piece with me. I still have it.

Breathing Room

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Breathing Room

I watched his breathing. At times it was barely perceptible other times it was labored, loud and had some shakiness to it. I hoped and prayed that he wouldn’t die during the three hours while I sat with him. It was my first time visiting, it got scheduled the way they usually do.

Initially the hospice coordinator sends out an email to see if any of the volunteers are available for a given case. She provides basic information; the day/time preferred, the town and a general synopsis of the situation. She’ll tell us if anyone else will be in the home or if there are pets and give an brief sentence about the condition of the patient. It’s almost always some form of cancer, the second runner up is COPD.

Usually the caregiver just needs to get out a few hours for work, doctor appointments or some other urgent matter. There have been several occasions where I relieved the caregiver so they could make funeral arrangements. That is such a sad and necessary outing. Once at a support meeting for hospice volunteers, a peer complained that the caregiver she relieved went out to play poker with friends. I don’t judge what the caregiver does with their time away. Providing care to someone who is terminally ill is difficult, if you want to take time off to play poker or have a beer, I am totally cool with that.

After the first email goes out, volunteers will alert the coordinator if they can take on the case. Once that is done a secure, private message is sent to the volunteer best suited for the task. This confidential message provides more in-depth information about the patient including the name and number of the main contact. Then the volunteer calls that person to schedule the visit.

My initial call for today’s visit happened two days ago. The wife needed about 3 hours to run some errands and I told her my available hours. Ginny sounded tense on the phone, I could hear the strain in her voice. You might think that’s the norm but oddly enough, it isn’t. Most of the families I have dealt with have a poise and calm that I can only attribute to denial, exhaustion or some zen like state that I have not yet obtained. Ginny was how I think I would sound if our roles were reversed. We agreed to the schedule and I told her that I would confirm the morning of my visit just to make sure we were still on. This is a sad and necessary precaution as you do not want to ring someone’s doorbell and find out that their beloved passed away the day before. It happens.

I called again this morning to make sure we were still on. Ginny sounded the same as the first call and I gently repeated the agreed upon times. When I got to the house, I greeted their neighbor in the driveway. She informed me that she would relieve me if Ginny ran late. Then I let myself in through the back kitchen door. I announced my arrival and Ginny welcomed me from a distant room. This is not uncommon as the tasks of terminal care can make it hard to leave the bedside. I made my way to the correct room and introduced myself.

The next 20 minutes was a series of harried movements and Ginny’s out loud mental check lists and a final dose of pain medication before she could leave. In these moments I witnessed a love that was so sweet it broke my heart. Ginny crawled into bed with Bill and explained where she was going, who I was, and that she would be back soon. It pained her to leave his side though I could tell she needed to leave for her own sake. Just a couple of hours to not be surrounded by the inevitable death of a man she has given the past 47 years to, the love of her life.

In a private moment in the kitchen, Ginny told me that she didn’t understand why he was holding on. I asked if he was waiting for a visitor to say good bye, a final conversation? She said she asked him but he didn’t confide in any such need. Sometimes the body lasts longer than you can possibly imagine, other times it expires in such a rapid decline even the most experienced hospice nurse doesn’t see it coming. Death is fickle and unpredictable even to the stewards who’ve witnessed it hundreds of times.

Ginny was finally able to pry herself away and I sat in the room with her love. Saying silent prayers, reading a book and keeping one eye on my bedridden friend. He was quiet until he needed to go to the bathroom. This was indicated with hand gestures and a reach for the portable urinal. A bit of panic always goes through me in these instances. My first concern is safety followed closely by privacy.

I’m not a nurse, nor do I play one on TV. I’ve been in the trenches and I can handle a mess. What I don’t want to do is accidentally cause someone with brittle bones to get a fracture by moving them the wrong way.  My Aunt had bone cancer and she broke both her legs trying to bathe herself, it was horrible. I think of her when I’m in these situations so I air on the cautious side.

We got through it without breaking anything and he fell back into a restless sleep. His agitation level at times made me wonder if he had just hours or days left. In the nearly 10 years I have been doing this I’ve seen many patients get into a state of agitation; flailing limbs, mumbling and a burst of energy followed by calm. This has happened in the last few days of life for many of the people I have visited as a hospice volunteer.

I’m not sure if Ginny will call me again to sit with her husband. If she does, I will make room for her and Bill. I will take the experience with me and think of them when I drive by their house. It’s something I do often when I drive past the houses where I have visited my hospice friends. Sometimes it’s a single encounter, other times I spend months visiting on a set schedule. Every experience is sacred and is something that becomes a part of me. The sad truth is, we are all going to die. The hospice patient just has a little advance notice.

 

 

What’s Your Superpower?

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What’s Your Superpower?

What’s your superpower? Wait, you don’t have one…..I bet you do. I bet there is something that you can do that eludes most of us. I’m not going to suggest that you have a superpower that is yours alone. I’m sure there is some overlap of powers out there. So I just want you to take a minute and pat yourself on the back for whatever that thing is that you do better than most.

I think we spend so much time comparing ourselves to the flawless pictures on social media. It’s easy to get sucked into that black hole of beauty and expectation that surrounds us all in our daily lives. Far too easy to feel bad for not measuring up. We do it to ourselves and our children soak it in like little sponges. As a parent I try to tame my crazy critical self around my kids so they don’t take on my personal quirks and anxieties. Yes I purposely censor my inner critic and try to keep my own brand of crazy tucked in. It doesn’t always work. They’re on to me and I suspect they know I would like to lose twenty pounds though I have never said it aloud in front of them. I try to put the focus on the fact that I work out consistently, 3 to 4 times a week. I place emphasis on the fact that I am strong and healthy. I won’t even get into my inner turmoil over aging naturally or fighting it with modern science…..I debate this one on a regular basis and I’m still undecided.

But back to the superpower…..my superpower is my willingness to go outside of my comfort zone. I will offer help in situations that I have no idea how to handle. I am secure enough to admit when something is too far beyond my comfort zone and I will ask for help or admit my short coming. I do this as a volunteer and as a business owner. I know it’s a little shocking for someone to admit when they are in over their head but I’m here to tell you it is OK.

I have a small business (super tiny – one woman show small). I basically provide help to people (and their pets). It’s a simple business which genuinely strives to help people. I started it a couple of years ago when I found it daunting to try and get back into the working world. I had been a SAHM for over a decade and I really needed to work again. It’s just a tad hard to get a job after 10 years out of a career during a dismal job market. So I took some time and thought about what I wanted to do. I decided that I wanted to work part time and model humility and a work ethic to my children and I have done that.

Right now my primary client is an 88 year old woman with dementia and mobility issues. I check in on her every day for a couple of hours and make sure she is safe and comfortable. She lives with her daughter who works full time. There have been times when I have walked into a literal shit storm. One day this week my sweet client was trying to wash out her poop filled Depends in the bathroom sink. She was extremely distraught when I got there and my first priority was to get her away from the poop to avoid further contamination and get her clean and comfortable. She was so upset that she was crying and apologizing to me. I remained calm, kept eye contact with her and told her that is was OK and that is wasn’t her fault. I got her settled and cleaned the mess. The one advantage of dementia is that you forget stuff. Within an hour my sweet lady forgot about this horrid incident and we went on with our day.

Another challenge I had this week involved a hospice visit. I have been a hospice volunteer since 2008 and this new patient will be one of my toughest. The patient is 47 (my age) and has several adult children and an 11 year old son (same age as one of my kids). I dreaded our visit this week. I have lost friends this age to cancer, this one was hitting me close to home.  I shed tears before I even met her. To top it off she wanted me to paint her toe nails which is something I generally suck at. But I showed up and offered to do it anyway and her toes looked pretty when I left. I soaked her feet and filed her nails. I rubbed lotion on her feet and we chatted like old friends. I left our visit uplifted which is the weird thing about hospice. It is incredibly rewarding in it’s own mystical way. I don’t question it. I just bring my willingness to go outside my comfort zone, my superpower. Tell me what is your superpower?

 

Their Stories…Tales of a Hospice Volunteer

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Their Stories…Tales of a Hospice Volunteer

I have heard so many stories from the people that I have met as a hospice volunteer. I meet others through a small business that I run where I fill in the gaps for people when they need help. I have met some interesting people along the way. People always have a personal reason for becoming a hospice volunteer. It isn’t the PTA, you don’t do it for your kids.

I became interested in hospice in my late 20s. My aunt was dying of metastatic breast cancer and she appointed me as executrix of her estate. It was an incredible experience because my aunt was a highly spiritual and deeply religious woman. She was young, not even 60 and she met death face on with a grace and dignity that eludes me on a daily basis. We had many open discussions during her final year and it made me wonder what it was like to know you were dying within days, weeks or months? I started to worry that the dying person may not have anyone they felt they could talk to….sometimes the people closest to us are the hardest ones to talk to when life is near the end.

Some people are so close to the dying person that it is too emotionally charged for them to have a coherent conversation. Then again, some can’t communicate when things are great. Toss in a terminal illness and some just go mute or into complete denial. The surviving family and friends generally have people to talk to but the dying person….who do they have? I decided that I wanted to be that person.

So finally 10 years after the seed was planted I decided to become a hospice volunteer through a local hospital. My kids were still young but the preschool hours and some kind friends provided enough kid free time for me to attend the Medicare required training. I had been a stay at home mom for 5 years at this point and it was great to check off a personal goal that was independent of my family.

The hospital I volunteer for has a training coordinator we will call her Kay. When a hospice volunteer is requested, Kay sends out an email to a group of hospice volunteers telling us a little bit about the situation and what day/time a volunteer is needed. Then a volunteer will ‘reply all’ that they can do it and Kay sends a secure email to that individual. The volunteer then has the information to contact the family and the visit is scheduled. Sadly we always have to check in the day of the visit to make sure the patient hasn’t passed, it happens.

A couple of years ago I received such a call from the wife of a man that I was supposed to stay with the next day. Sadly her husband had passed a few hours before she called me. I find it remarkable that she would have the presence of mind to even think of me but she did. We chatted for a few minutes and she mentioned that she lied to her daughter and told her that a friend was staying with her that night because she did not want to inconvenience her. I never met that woman in person but I think of her often.

That’s how it is with hospice work. You meet people at this most intense time in their life. Sometimes it is scary and awkward and uncomfortable and other times it is filled with grace, dignity and love. You never know what you are walking into when you arrive at someone’s home. Sometimes the family is close and open and other times you can feel tension in the air from countless family fights and relatives being forced in a room with someone they haven’t spoken to in decades. I go in knowing that these people have an entire lifetime of memories, emotions and conflicts and I am not there to try to sort that out. I am there for two reasons: to be there for the patient in whatever capacity they need and to give the caregiver a break.

They, the patients, always leave me behind at some point. Sometimes they hang on well past the point that anyone would have thought they could. Other times they go suddenly….even though they were on hospice, you are shocked….they were a fighter and you thought you had more time. Most of the time though I know when our last visit has occurred. More times than not, I will get an extra squeeze of their hand, a knowing look and an extra and most sincere thank you. And I leave knowing I will not see them again.

Though they are gone, they are not forgotten. Many tell me their stories some are funny, others are heart breaking and I hold onto those stories and take them with me. That is our gift to each other.