There was a great article in the Minneapolis Star Tribune last Sunday about hospice care.
http://www.startribune.com/lifestyle/givingback/200632111.html
I agreed with a lot of it, but took issue with a few things:
The volunteer said that he isn't really supposed to be friends with his patients, and he said that he normally doesn't go to the funerals of his clients.
I find that some of my dearest friends were once clients, and going to their funerals is a matter of respect for me. It tells the family that they were meaningful to me, and therefore, worthy of my time by paying honor to them at their memorial. The celebration can also be a time to find out amazing things about clients that I never knew. I love seeing all of the photos of days of health and happiness. It is an irreplaceable way to say my final good bye and I would feel cheated without it!
I have the most delightful patient right now. "June" served as a missionary and has the most interesting life story, including raising 7 children! I often strum on the Reverie Harp when I
visit with patients. It is wonderful if they are sleeping, unconscious, or unable to communicate. My current patient, June, is usually sleeping when I stop in to see her, so I sit quietly and play the harp in her room. Several weeks ago, she was awake when I arrived. She was all excited to ask me if I had been there the week before and if I had played the harp for her. I told her that I had been there and did play the harp. She told me that even though she was asleep and dreaming, the music wove into her dreams and she found it so comforting and beautiful. I was so happy. I have played so many time for people who are non verbal or who pass away without regaining consciousness. With what June told me, I now think that they can hear me playing and are comforted. What a wonderful confirmation.
I can't imagine that I haven't posted since February. So much has been going on, including amazing weather and a beautiful and early Spring!
I was visiting a patient that I have been seeing every week since last summer. She loves the male deacon/hospice chaplain that I travel with, and lights up whenever he comes into the room. It's a thing of beauty to watch. Several weeks ago, we saw a major change in her. She began sleeping more and more, and was often very sleepy or confused during our visits. About two weeks ago, when we arrived, we sat quietly in her room. She woke after a bit and asked us to leave. She said that she didn't want visitors.
I tell you this because this may be part of the process for someone you love. It can be shocking or hurtful to hear. When my partner and I reflected on the experience, we thought of a few things. Once we removed our ego from the interaction, the request wasn't at all shocking. She was tired and not feeling well. We started to think about how pleased we were that she felt comfortable to speak her mind with us. Being on the outside of the goings-on in some patient rooms, we often see someone in the last days of their life feeling like they have to entertain a litany of guests, when they are exhausted or uncomfortable.
Our patient was being honest with us, and we could support her by leaving. Knowing that she loved to pray, we realized that we could offer support in many additional ways, like prayer, letting the nurses know that she may not want visitors, and letting the family know that the patient was changing. Honoring her wishes was giving her the support that she asked for.
It can be difficult to forgo asserting your agenda into such a situation. We were there to visit. We were going to brighten her day. She loves the chaplain. Maybe she didn't understand that he was her visitor. Like I said, ego can make a mess of things. The best thing we can sometimes do for a patient is to give them what they long for. It may be difficult to turn visitors away, but it may be the right thing to do.
Luckily for us, we have been to see the patient again, and although she is often living in the past, it is delightful to visit and learn about her life. Both the chaplain and I feel so blessed to have each visit. If a time comes again when she doesn't want to see us, we will have to accept that as part of her individual journey.
Lately, I have been thinking about what I really love - hospice work. I love so many aspects of it. For a long time I have held the belief that people don't come into this world alone, and they should not leave this world alone. When I was 14, I lost a brother in a car accident and have always wondered if he felt alone or if he died without that knowledge or feeling. In my hospice work, we don't often care for people who have no one, but it does happen. Sometimes, family lives far away, and they are doing their best to get to their loved one, but travel can be unpredictable.
I decided that I would like to actually do Vigil work. As a doctor, midwife, or doula aids in bringing a child into the world, vigil work or death midwifery, respectfully ushers people out of this world. Now, keep in mind, I am not referring to physically doing anything that would speed up the process like some "death doctors" who have been in the news. I would just like to be a peaceful loving presence that stays with a person in whatever way brings them the greatest comfort. Sometimes, I find that putting these things "out there"
via blog posting or conversation is like telling the universe, "I am ready to do this work, so help to prepare me." I really think that I was born to do this work, and I am looking forward to the journey of preparation and participation.
I had the honor last Thursday of visiting 6 different hospice patients. I spent quite a long time with one patient, "June". She is suffering from dementia. She was very unsettled and something was obviously troubling her. She told me that she was afraid to go "home".
For many hospice patients "home" has several meanings. Some who have been removed from their physical homes wish that they could recover enough to return. For others, I believe that "home" means heaven or wherever their beliefs will take them in the afterlife. June kept telling me that she needed to go home but that she was afraid because her mom and especially her dad were mad at her. I had attempted to calm her by saying that I was pretty sure that they would forgive her when they saw her. Having no idea of her family history, I didn't want to say too much. I usually try to turn worries or thoughts into questions. I asked her if she didn't think that she would be forgiven and reminded her that her parents loved her. We sat and held hands without speaking for about 30 minutes. She seemed to relax. She asked me if I had any idea how much she loved me. It took me by surprise. I don't know who she thought I was. I decided that it didn't matter, the important thing was that she was sharing something very real to her with someone she thought she loved. I replied with a thank you and told her that I loved her too. It seemed very important for her to tell me. I have done so much research about dementia. Many people have the feeling that they need to correct the patient or loved one. "Your parents have been dead for years. Your son can't be older than you. You have lived here for years. You are home."
My experience is that the only thing that the so-called correcting does, is to frustrate and confuse the patient or loved one. I have designed a good rule of thumb. If what the patient says is incorrect, but won't harm anyone, let it go. If they say something like "I'm all alone" it is helpful to talk to them in a soothing way and point out the physical surroundings and nurse or family to "remind" them that they are not really alone or in danger. If they begin talking about someone who isn't present, or call you by another name, you can say something like: "Oh, Clare . I haven't thought about her in years. Tell me about Clare." Often their memories are crystal clear and are a wonderful source of connection. Their stories can lead to other things that they remember.
Just remember to be patient and ask yourself what the kind and gentle response would be. It's amazing what can come out of those interactions.
I will always remember my time with June last week as a gift!
Here is a great resource for dealing with people with dementia www.dementiacarefoundation.org
I have another dear friend who has become special to me for many reasons. She is delightful, loves to smile and laugh, and shares a name with my beautiful grandmother. "Mabel" loves the outdoors, birds, fresh air, and all that nature has to offer. Presently she is cooped up in a double room not side by side as we would all hope, but split down the middle by a privacy curtain that is constantly drawn. She cannot see outside unless she goes into the dining room, and she cannot manage that herself. As I visit nursing homes, I am often scratching my head wondering who in the world designed them!
Mabel and I have delightful visits. She loves to laugh and tell me about growing up as part of a large farm family. She told me the other day that she and I are going to "do some big things together". She would love to take a few road trips, but for now, I would love to find her some bird recordings and a way to play them in her room. It would be so much more pleasant than the sound of blaring daytime tv that is her constant white noise.
There are people in our lives that make us want to be great people and do great things. Mabel is one of those people for me. If I can't help her, she has fanned a flame in me that will not be extinguished until I can successfully help others like her. To Mabel and me, being able to see what beauty mother nature creates every day should be seen and treasured.
To be able to crack a window in any weather and fill your lungs with fresh outside air, should be a basic right. To watch birds at a feeder, or squirrels scrounge for food, would provide hours of enjoyment that tv never can.
Once again, I remember touring Judy Berry's Lakeview Ranch .... I recently got a phone call from my nephew who had visited Lakeview, and he told me that he and his companion were moved to tears more than once. Judy is working magic, and freely and lovingly shares all that she knows to whomever will listen. She wants her concept of treating the elderly with dignity and love to expand and multiply exponentially! I do too. Last week I dedicated one of my morning walks to my friend Mabel and had a running dialog in my head about the beauty that was all around me and how alive I felt, so that I could remember to tell her everything.
I dedicate the photo of the rose-breasted grosbeak, Mabel's favorite bird, to her as well.
I just visited with one of my amazing patients yesterday. I was struck by her honesty and candor. When I was there I asked if she was in any pain. She was not. In hospice, the goal is for the patients to be as pain free as possible.
I had just spent 90 minutes at an in-service dealing with physical vs. spiritual pain. The premise was that if a patient has unresolved spiritual pain, it can manifest in physical symptoms, or it can be misunderstood by the patient and/or caregivers as physical pain. Often the result is medication.
What my dear friend and I got to is that she is frightened. She knows that she is in hospice, and that her time is limited. What she was wondering about was if her new declined state would be the new status quo or if she was in a downward spiral. I spent some very treasured time just listening to her concerns and letting her cry while we held hands. Then we talked about what it might mean if this was the "new her" or if things were going to decline.
It was an important moment for me. I realized that upon initially asking her if she was in pain, both of us were thinking of the physical pain that she is asked about countless times each day. What she needed to come to grips with and let out was the spiritual pain of the uncertainty that she was feeling. That took some time and talking to uncover. So often, the care-givers are rushed due to their mountainous work load, and they don't have the time to just sit and talk.
My wish for everyone, patient and care-giver, is that there is someone in their lives who can just come and sit. Sometimes, the patient is in need of a good listener and hand-holder, and sometimes that is the need of the care-giver.
A dear, dear friend of mine just lost her father to cancer. She ran herself ragged between her family in one town, and her parent's home in a town 4 hours away. She didn't know how long any of them had. She shared with me, the hours that she laid in bed with her father. They just talked, or looked at photos, or even watched bad daytime tv together. She told me that the memories from that time are among her most precious. I don't know if she remembers how many loads of laundry she did, or how many bedpans she emptied, but she has crystal clarity of the times when the two of them were just quietly together. It gave them time to talk about her father's hopes, fears, and the mark that he left on this earth and in the heart of everyone who knew him. What an amazing gift!
Pay attention to the spiritual care of the family. Find the help that makes it possible to "just be" sometimes, and see what comes up for exploration or release. It is the ultimate gift!
As a highlight of my week last week, one of my long term hospice patients with dementia was alert and lucid. When I introduced him to someone new, he shook their hand and greeted them. Then he and I shook hands and he didn't let go of mine. I sat right down on his bed, and we talked a bit about his past as a scientist for 3M. I asked him if he was the kind of scientist who worked on paper, or if he did cool things in a lab and got to do experiments. He was glowing when he told me that he remembered that he wore a lab coat every day. He was full of smiles and little bits of information, and after almost an hour I gently extracted my hand and left to give him time to rest.
I went to a different home to see another patient and ended up feeding him "lunch". Pureed lasagna and beans didn't look good to me and didn't seem to taste good to him, but we cooperated enough to get some down. After lunch, the sun was shining brightly, so I wheeled him out onto the patio and into the fabulous sunshine. It was a bit cool, but he and I stayed outside and sat holding hands. He closed his eyes and fell asleep in the sunshine, with the fresh air filling his old lungs. He was so peaceful, and I swore that if he could speak he'd have said "Aaah, this feels so fantastic!" I wondered when he had last been wheeled outside.
There are days when I feel so ineffective as a volunteer and days when we are all in sync. This hospice day was one of the best that I have ever had. I felt so very blessed!
Yesterday during my rounds, I was visiting with a man that suffers from advanced dementia. I like to draw people into the moment with questions that may be easy to answer. I found a photo of "Bob" and his wife. Bob was in an army uniform, so we talked a bit about that. He was a Staff Sargent in WWII. I asked about his wife. He was able to tell me her name which was nice. I had a hunch and asked him if she like to sing. I watched a light turn on for him. He told me that she did indeed like to sing. I asked if she sang around the house. He got a little cloudy then and said that he didn't remember her singing around the house. I asked if she sang in a choir. Bob got a sparkle in his eye, became excited as he found the memory, and told me that she belonged to the church choir and loved to sing. It was a wonderful moment for both of us.
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This is one of the many reasons that I love working in hospice. It puts me in touch with what really matters over and over again. I left wondering... if my friends and family only had a limited memory, what might they remember about me? Life is full of little things that leave lasting impressions. I made a new vow to LIVE, LOVE, and LAUGH more often. That's what memories are made of.
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This is my wonderful friend Guy. I pick him up every Thursday morning and we usually head into Wisconsin. We stop at a nursing home there to visit with patients, and sometimes we visit people in their homes as well. After our time in Wisconsin we return to the Stillwater area for lunch and more visits. In a typical day we go to one or two other nursing homes or private homes, and then finish our day at the Gathering. http://www.lakeview.org/gathering.aspx The Gathering is a state of the art hospice facility located in Boutwell's Landing. I bring the Reverie Harp on our visits, and as a Catholic Deacon and hospice chaplain, Guy brings communion for some and a twinkle in his eye and a wonderful deep singing voice for all! He's quick with a hug and soothing words, and is loved by all who are fortunate enough to know him. It is quite literally like spending the day with a famous celebrity. Everyone knows Guy and wants to talk to him.
Many may have the preconceived notion that all hospice patients are very near the end. In reality, we have quite a few who are up, alert, and conversant. In every single case, Guy and I are blessed beyond belief by these amazing people sharing their lives with us.
