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Another client has passed over 
Started by JennJilks
12 Sep 2013, 2:19 PM
As a volunteer, I find the loss of a client difficult. The professionals maintain a certain amount of professional boundaries. We volunteers often attend the funeral. I sang at one of them! We are closer to family members as our work may be of shorter duration, and we provide the most intimate of care, becoming emotionally involved as this is how we treat clients with dignity and respect.

I have learned much from my clients.
My penultimate client had mild infarctions, resulting in dementia and cognitive episodes. He locked me out of his house, while his adult son was away, during a thunder and lightning storm. A wicked sense of humour, he swore like a trooper, his son former military!
My last client chose to die in her home, but was prepared to go to hospital if your husband could not manage her care emotionally, physically, or otherwise.
When I last visited her, she was agitated, and clearly uncomfortable.
The Charge Nurse gave her the palliative performance scale (PPS) which the pros keep secret, but it is a good tool to determine the palliative trajectory. She was at 30% PPS, I believed. Navigating the journey towards end-of-life is the big question. "How long does s/he have?"
All we can do, as caregivers, is watch this gradual progression.
This lovely woman had her stone picked out, her DNR in place, she'd tried a treatment plan for her breast cancer, its invasion into her lungs and now brain tumour.
Unlike the pros, a volunteer comes in and sits, quietly if the client sleeps. I knew she was agitated, and exhibiting pain symptoms. The doctors seldom see this. The nurses are the ones who call the doctors and suggest the patient is in pain. It irks me no end, as I keep arguing with staff.
The husband was not giving her the medication for agitation and pain, as he thought the bubble pack form the pharmacy had all this in it. He expected his wife to ask for it.
This did not happen. Many patients cannot articulate their pain. My late father was a perfect example, as his brain tumour precluded higher level thinking skills.
I spoke with him, after the nurse left, and suggested that good pain management means keeping on top of the pain, and that his wife's agitation should be medicated.
She passed over the day before. I know she was not in pain, as he realized he was to give her the morphine on a regular basis. I know I made a difference, however late or small.
My supervisor will send me a bereavement card, as she always does. It is comforting to have my grief acknowledged.
I regret that I did not mention the Room 217 Music Therapy for palliative patients to the family. A non-profit music therapist has written and recorded these tapes. They are wonderful.  
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Reply by marstin
14 Sep 2013, 7:02 AM
Hi JennJilks,

Thank you for sharing your part in being a volunteer. How heartwrenching it sounds. I have considered volunteering but felt that I needed time to heal from my losses before I looked into it. Listening to your story has certainly made me realize that I will have to do some real soul searching to see if I have what it takes to be able to handle the pain of watching people and their families suffer.

This brought back so many memories for me. I remember my husband fighting with a cold and clinical doctor who didn't have the compassion of a gnat nor any thought as to the damage she was doing by pointing out to him that he was dying. Kicking her out of our home brought some satisfaction to me but she took away every last bit of hope that he had and he crawled into his bed and passed away within a few days. All of this because she was trying to strong arm us into signing a DNR.

When my mom was in her final days I went in to spend time with her. The nurse came in soon after I got there and asked me if she was in pain. I mentioned that she was arching her back and clenching her fists so possibly. She gave her a shot then off she went. Within minutes my mom stopped breathing and I panicked and ran out to find the nurse who was nowhere to be found. When I got back my mom had started to breathe again. My brother showed up right after that and we sat beside her as she stopped breathing again, started up, then finally stopped breathing altogether. Again I jumped up and ran out looking for this nurse who was nowhere to be found. I finally called over to another nurse and she came and checked her with a stethescope and confirmed that she was gone. She said our nurse was on a break but to let our nurse know when she came back. Then she went on a break also. My brother left for an appointment saying he would be back soon and there I was alone with my deceased mom. I finally ended up running outside to break down and a stranger who worked at the hospital spotted me and offered me a hug. When my brother returned, we put together my mom's things and still couldn't find that damn nurse. After I got home, she called me and angrily asked if anyone was coming up to see my mom before she was taken away. I was shocked. What I wanted to say was 'who would give a person in comfort care a shot of pain medication, knowing that she was very close to the end then forget to come back and check up on them'.

I'm afraid I don't have much faith in the health care system anymore. Although I know that there are still nurses who care, they are burnt out. The doctors have become robotic and insensitive. Volunteers like you are there for the right reason. Human kindness. Please keep doing what you are doing as I'm sure that you are making a huge difference in every life you touch whether you know it or not.

Hugs,
Tracie
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Reply by JennJilks
14 Sep 2013, 12:48 PM
Gosh, Tracie, that is heartbreaking.

I don't like seeing families suffer and my goal is to prevent suffering. Have you had good experiences with healthcare professionals?
You are right, many are burned out. many more, however, are doing a great job.
Partly, I have come to terms with the fact that death is a normal, and expected part of life. Those who deal with death every day must have a certain amount of distance, as you cannot be grieving all day, every day. You can only try to keep people comfortable.

It will happen when it is time.
My dad passed over in the wee hours, after I had finally fallen asleep on a cot in his LTC room.
 Thank you for your words of support.
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Reply by marstin
15 Sep 2013, 5:09 AM
Hi JennJilks,

Rereading what I had written to you makes me sound quite bitter and I guess in some ways I am. Losing both of them within weeks of each other I'm sure made me much more sensitive to what was going on around me. Unfortunately the hospital we deal with is disliked even by the paramedics.

As for good experiences along the way, I must admit that there have been some that just shine. Len's social worker was a darling. After he passed, we had to put my mom in the hospital the next day. A few days later she was sitting with my brother talking about my mom and when she saw me her jaw dropped. She looked from my brother to me then jumped up and hugged my daughters and I and was so upset that we was having to go through this again so soon, She was amazing. The day my mom passed away we just happened to be walking toward each other and she took one look at the faces of my daughters and I and with tears in her eyes grabbed us and held on. Unfortunately, she went off on maternity leave soon after that and we were unable to get her to work with my daughters to help them with grief councelling which unfortunately they never did get.

My husband's home nurse was like my best friend. He would come in and chat with us and was so well received in the household. He went away on holidays for a week and that was when the altercation with the doctor happened (there were two incidents with her) and when he came back from holidays he was so shocked at the decline in my husband who had previously been yakky and sitting in his office watching tv and was now flat out in bed without much in the way of communication. It was after this that  I remember him and I sitting and talking one day about so many different things that we had in common and it was like we had known each other for years. When I told him that I could never do what he does, he smiled and said 'Oh yes you could. You are one of the rare ones that truly could do this'. He was one of those people that makes me think that there are angels walking among us. He had even offered to come and dress my husband for our wedding day (something Len had decided he wanted to do after 23 years of common law) and was devastated when he called and I said that he had passed away a few hours before. This sweet caring man will always be in my heart.

So, as you sit quietly beside those who are preparing to pass over, remember how important of a role you play in their lives and their families. Although you may never again hear from the family, know that you have given them such a precious gift that will forever be etched in their hearts. That you are able to keep their loved comfortable and do it in such a loving way means so much.

Hugs,
Tracie

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