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Schwerkrank und trotzdem zu Hause (English translation of the article below)

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Artikelautorin: Bea Blaser, Einsatzleitung kispex Kinder-Spitex Kt. Zürich für INTERCURA Nr. 98, Sommer 2007.

Auch Kinder leiden an schweren, chronischen, zum Tode führenden Krankheiten. Die kispex, Kinder-Spitex Kt. Zürich pflegt und betreut seit 1995 kranke Kinder von 0-18 Jahren zu Hause, in ihrem gewohnten Umfeld. Leiden Kinder an einer unheilbaren Krankheit, haben sie und ihre Eltern oft den Wunsch, möglichst viel Zeit zu Hause zu verbringen. Die Kinder sehnen sich, nach ihrem gewohnten Tagesrythmus, den bekannten Gerüchen, dem Zusammensein als vollständige Familie. Mit Unterstützung  der Pflegefachfrauen der kispex, könnenKinder welche auf Sauerstoffverabreichung , Sondenernährung, Schmerztherapien, Infusionstherapien uzw. angewiesen sind, zu Hause gepflegt werden.

Fallbeschreibung

2006_11_23Ingrid ist gerade drei Monate alt, als sie bei ihr die Diagnosis einer schweren, unheilbaren, zum Tode führenden Krankheit gestellt wird. Für die Eltern bricht eine Welt zusammen. Sie können sich nicht vorstellen, ihre kleine, fröhliche Tochter zu verlieren. Nach dem ersten Schock beschliessen sie, die verbleibende Zeit mit Ingrid intensiv zu geniessen.

2007_01_06Während einer Hospitalisation wegen einer Infektion der Atemwege, haben die Eltern den Wünsch, Ingrid sobald als möglich nach Hause zu gehen. Da sie auf Unterstützung durch Pflegefachfrauen angewiesen sind, werden Einsätze durch dir kispex organisiert. Kispex klärt den Bedarf ab, und es werden vorerst Einsätze tagsüber geplant. Die Pfelegefachfrauen übernehmen einen Teil der medizinischen Massnahmen wie: inhalieren, orales Absaugen, sondieren, sonde neu stecken, Lagerungen, Besonderes Gewicht wird auf eine erfolgreiche Schmerztherapie und die Bekämpfung von Symptomen wie Übelkeit, Obstipation, Juckreiz uzw. gelegt. Auch die Anleitung und Beratung der Eltern gehört zum Tätigkeitsbereich der Pflegefachfrauen.

Der Zustand von Ingrid verschlechtert sich kontinuierlich. Sie kann ihre Händchen nur noch wenig bewegen, hat viel Sekret im Mund, welches sie nicht mehr schlucken kann. Die Nahrung muss ihr über eine Magensonde verabreicht werden, immer öfters braucht sie Sauerstoff und die Schmerzmittel müssen immer wieder neu angepasst werden. Die kispex passt die Planung der Einsätze oft täglich den Bedürfnissen von Ingrid und ihren Eltern an. Tagsüber übernehmen die Eltern einen grossen Teil der Pflege. Nachts pflegen und überwachen Pflegefachfrauen der kispex Ingrid. Zwischendurch hat Ingrid gute Phasen in denen sie herzhaft lacht, plaudert und das Zusammensein mit Mama und Papa richtig geniesst.

2007_03_10_3Viele Freunde und Bekannte kommen zu Besuch. Ingrid freut sich darüber. Sie ist abgelenkt und es ist immer etwas zu sehen, zu hören. Es gibt aber auch Situationen, in denen Ingird Atemnot und/oder Schmerzen hat, etwas trinken möchte, aber nicht mehr schlucken kann. In solchen Momenten sind die Eltern froh, dass sie die Pikettnummer der kispex wählen können. Somit werden sie bei Bedarf Tag und Nacht kompetent beraten und falls nötig, organisiert kispex zusätzliche Einsätze. Die interdisziplinäre Zusammenarbeit funktioniert gut. Zusammen mit der Neurologin bespricht kispex den Zustand von Ingrid  immer wieder und Verordnungen werden den Bedürfnissen des Kindes angepasst. Die guten Phasen halten immer kürzer an, Probleme nehmen zu. Die Atmung von Ingrid ist immer stärker beeinträchtigt. Ihr Sauerstoffbedarf stiegt. Das viele Sekret bereits ihr grosse Probleme. Dazu kommen noch Übelkeit und Obstipation. Der Pflegebedarf wird intensiver. Ingrid hat nun auch Oedeme. Die Medikamente müssen immer wieder überprüft und ihrem aktuellen Zustand angepasst werden. Die Eltern pflegen Ingrid mit grosser Liebe und Hingabe. Trotz schwerer Momente, hat ein herzhaftes Lachen der Eltern und ein zuletzt nur noch zartes Lächeln von Ingrid immer Platz.

2007_05_13_9Ingrid ist erst 8 Monate alt und trotzdem lassen die Eltern sie mitbestimmen. Ingrids starke Persönlichkeit ist immer wieder spürbar – sie will leben, sie kämpft, sie weiss sehr genau, was ihr gut tut und was nicht und kann dies gut ausdrücken. Und dann kommt der Tag, an welchem die Kraft zu leben nicht mehr ausreicht. Bereits in der Nacht hat sich der Zustand von Ingrid weiter verschlechtert und alle wissen, dass nun der Zeitpunkt des Abschiednehmens gekommen ist. Ingrid liegt entspannt und ohne Schmerzen, ruhig und geborgen in den Armen ihrer Eltern.

 

English translating done by Karin Andersson Hagelin

Children also suffer from severe, chronic diseases leading to death. The kispex – child home care team in Kanton Zurich supervises since 1995 chronically ill children from 0-18 years at home, in familiar surroundings . Children suffering from a terminal illness and their parents often have the desire to spend as much time at home as possible. The children and their families want to be able to keep their usual daily rhythm, the familiar surroundings and being able to spend time together as a complete family. With the support of the nursing staff of the kispex children who needs oxygen administration, tube feeding, pain therapies, infusion therapies etc.  can also be cared for at home.

Case Description
Ingrid is just three months old when she is given the diagnosis of a serious, incurable, and terminal illness. The world collapses for her parents. They can not imagine losing their little cheerful daughter. After the initial shock they decide to enjoy the remaining time that they have with Ingrid.

During a hospital visit treating a respiratory infection, the parents requests to take Ingrid home as soon as possible. Since they are dependent on support from nursing staff, the medical organisation that is needed to care for her at home is taken over by kispex. Kispex plans the care and medical equipment that is needed and organises the schedule. The nurses take over a part of the medical measures such as: inhalation, oral suctioning, enteral nutrition and pain management. Special emphasis will be on a successful pain management and the control of symptoms such as nausea, constipation, itching etc. Also, the guidance and counseling of the parents is part of the activities of the nursing staff.

The state of Ingrid continuously deteriorate. She can only move her hands a little, she has a lot of secretions in her mouth which she can no longer swallow. The food must be administered by enteral nutrition, and more often Ingrid needs oxygen. The pain medicines have to be adjusted again and again. The kispex changes the schedule daily to support the care and needs of Ingrid and her parents . During the day, the parents take over a large part of the care. At night kispex nurses take over the care and supervision of Ingrid.

Ingrid has good phases in which she laughs heartily, chats and enjoys being with mom and dad. A lot of friends and family come to visit. Ingrid love it! She is distracted and there is always something to see  and to hear. But there are also situations in which Ingrid’s shortness of breath and / or pain takes over. When she want something to drink, but can no longer swallow. In such moments, the parents are happy that they can choose the kispex emergency number. They always have access to expert advice day and night if necessary. And kispex can always organise additional care for Ingrid at home.

The interdisciplinary collaboration works well. Together with the neurologist kispex discusses  the state of Ingrid repeatedly and regulations are adapted to the needs of the child. The good phases keep getting scarce, problems with Ingrid’s deteriorating health are increasing. Her breathing is increasingly impaired. Ingrid’s oxygen demand is increasing. In addition there are nausea and constipation. The care needs are now intense, and Ingrid has now developed oedema. The medication must be reviewed and adjusted again and again. The parents care for Ingrid with great love and devotion. Despite serious moments, the hearty laugh of the parents and Ingrid’s smile always fills their home.

Ingrid is only 8 months old and yet her parents makes sure that she is let in on all the decisions and their family life. Ingrid’s strong personality is always noticeable – she wants to live, she fights, she knows very well what she needs  and she expresses it very clearly. And then comes the day, when the strength to live is no longer sufficient. In the night, the state of Ingrid has continued to deteriorate and everybody knows that the time to say goodbye has come. Ingrid is relaxed and without pain, quiet and secure in the arms of their parents.

It took me nine years to face my grief

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scared as hellIt took me NINE years to reach that point of exhaustion where I just said to myself “I really, really, really need to get help to finally let go of the all the pain and drama in my life”. By that time I had lost my dad, moved abroad and lost my first born daughter (in that exact order).

What would happen if I finally took charge of my emotional system? What would need to change? Who or what would I have to let go of in my life? What patterns, behaviours and thoughts would I have to change? What would I have to start doing or who would I have to start being if I got well, finally felt unstuck, started to live my purpose, quit that awful, life draining job? Who would I have to become if I let go of all the drama that defines me?

That’s a lot of scary stuff… I know, that’s why I waited for so long. But I refused to define myself as the bereaved mother, stuck in pain, guilt and sadness forever and ever. There had to be another way!

Only you will know when you have reached that crucial point when changing how you define yourself and your pain and drama is the only sustainable thing you can do in order to move forward. Why don’t you grab the opportunity and start getting clear for the new year NOW by redefining how you want to show up in the world? How you want to feel? What you want to contribute to?

There are a million-and-one techniques out there, I’m teaching ONE of them, but I encourage you to go out and investigate which one rings true to you. Only you know whats best for you.

Can broken dreams cause grief?

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Broken dreamsA lot of people react when I tell them what I work with, and most of them say “Luckily nothing terrible has happened to me yet.” or “I haven’t lost anyone close to me, but when I do I know who to call.” That’s all fine, of course, it’s not that I wish for anyone to have a traumatic experience so I can have something to do!

But what about the time you had a really bad break up with someone? Maybe that shattered not only your heart, but also the dream of you two being together, starting a family and growing old together?  Or what about the loss of a job, and hence loss of financial security and a dream of a career within that company or field? Or moving abroad (as we expats have done), not only being a big adventure, but also bringing with it the loss of familiarity, language, friends, and (often) the ability to be present at big life events such as weddings, christenings, funerals, or birthdays.

So in what way does the Grief Recovery Method® help you get rid of the pain and frustration that broken dreams brings with it? You might have been trying a number of different things to feel better again, but are tired of trying and “failing” yet another “self help” method. What could possibly be different with this Program?

For me, it’s been the simple fact that I got to take a good look at all my disappointments, losses and broken dreams in my life so far. I’ve looked at the myths I’ve been taught how to deal with loss, all the intellectual comments I’ve heard when in grief, and all the (often unconscious) behaviours I’ve been using in order to avoid facing my feelings triggered by a traumatic event (food, anger, frustration, TV…).

It’s like taking out the weeds by the roots instead of either ignoring them completely (yet knowing perfectly well that they are still there), or swearing about their presence but refusing to do anything about it!  For me, it was a clear and logical step-by-step action plan that finally quietened a majority of my extremely limiting “Why’s?”, “What if’s” and “If only’s”. I say majority, because the job never gets completely done. I would be lying if I said that you would be living happily ever after just by working through this Program.

But your you will have a brand new set of extremely helpful tools to help you handle major life events. You will have taken back the responsibility how you let those events affect you, and therefore you get to decide how to feel and what kind of support you need. I was so good at giving away the power over my own emotions to others, but now I ask myself this question when faced with a situation that triggers all these scary emotions: “To who or what do I give the power to control how I feel in this very moment, and why?”, and that is something I did not do before!

So if you want to know more about me, what the Grief Recovery Method® is, and if it is for you at all(!), please feel free to book a Discovery Session with me either in person or via Skype/Zoom!

Karin Andersson Hagelin

 

 

Much Love, Karin

 

WHY I do what I do

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There are so many ways to pitch your business… But what would happen if I started telling people WHY I’m really in the business I’m in, from the heart? 

That question struck me as I was thinking of sending yet another “sales pitch” mail to all the networks I’m in. Do I want to sound like the current “Newsletter trend” or do I want it to come from the heart? When is it actually OK to speak from the heart without following all the sales pitch rules and formats? Are people going to find me weird if I do?

There is only one way to find out I guess, and that’s putting it to the test!

So WHY I’m in this business of Grief Recovery?

When we lost our firstborn daughter it dawned on me how little help there was for us as parents. We had received excellent medical care for our child, but when she had left us and all the medical equipment had been collected we were standing there with an empty crib, diapers, baby clothes, toys and all the rest of it that comes along with a baby. We now had to arrange all the practical details like organising the funeral, tombstone, documents for flying back to Sweden with an urn, insurance, medical bills having to be clarified etc etc etc.

Having to deal with all of that while in a state of chock and grief was mind boggling. There was no real list of support options presented to us, and I had to muster the energy to look for help myself.

I immediately signed myself up as support parent at the Children’s hospital and the palliative home care team here in Zürich to at least give other parents with the same diagnosis a chance to contact a fellow parent. But what about all the other people being stuck in loss and grief? How could I be there for fellow expats experiencing loss, living far away form their natural support system of family, friends, language and familiarity?

That’s when I decided to do the certification to become a Grief Recovery Specialist. I now work with my passion to help others getting unstuck, feel less alone in their grief and have someone listening to their story. I wake up every day feeling so blessed to be able to do this kind of work, and that our daughter taught me so much about life, death and all the things in between. Like my coach Edson Williams said yesterday, “Karin flipped the script from a bereaved parent to using the loss as an inspiration to help others.” That really warmed my heart.

So that’s WHY I’m doing what I’m doing! I just can’t stand the fact that so many are stuck and limited by their unresolved grief, and if I can just help a handfull of these people it’s worth it! And I just have to trust that the people needing my help will find me, in one way or another. Have a great weekend and start of February!

change

“I have a big sister and her name is Ingrid”

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We have managed to shock quite a few people during our holiday in Sweden this year. The reason being that Elin is now big enough to share her world with people she meets (and that are not immediate family or friends), and she proudly tells everone that she has got a big sister who is called Ingrid.

Many then look at me as if asking “Is she making this up?” and I then find myself smiling a bit apologeticly for having to “shock” them with the news that it’s true and that Ingrid is in heaven. Then there is a short pause and maybe an “oh” or “I understand”and that’s it. I’m not saying that it’s wrong, hurtful or even irritating, it just is what it is.

I have to get used to my children speaking freely about the fact that they do have a big sister in heaven. And I have to make sure that I can support them with words and stories in order to help them tell others about their reality. Ingrid is so present in our lives and that is how we wanted it to be, no secrets and no hiding the fact because her younger sister and brother are too small to hear the truth.

So if anyone out there knows of a good book for children who has a sibling in heaven, and that is POSITIVE and FUN, please share, also so I can share it on to other families in similar situations!!! Thanks and have a fantastic day!

                                    Elin and Victor planting flowers for Ingrid <3

The weird wonders of vision boards!

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I lerarnt about vision boards when I first med Edson Williams (leadbyexample.com) as I attended his workshop “Access to Success” in November 2010. So I decided to give it a go last year, with this result:

There was a lot about changing carreer and work on reaching my dreams, but also a picutre of Lilou Macé (liloumace.com), a web TV host who travels around the world interviewing just about any person she finds interesting! What a cool thing to do! And there are a lot of famous names on her interview list so go check her out on YouTube (liloumace).

Next week, on the 5th of July, I’m going to have lunch with Lilou in Stockholm!!!! I mean, how cool is that?! She is one of my role models right now regarding living the dream and her interviews has brought me to where I am today in a way. A lot of people she’s beein interviewing has helped me personally, and also helped me help others. I’ve bought tons of books, I’ve forwarded and posted hundreds of her interview links and I keep on following her progress.

This year’s vision board hosts a lot of head lines from a Magazine given out by Carolina Gårdheim at Kreativ Insikt in Stockholm (kreativinsikt.se), like “Find your own Life Artist”, “Creative Insight” and their Vision as it was so nicely written. I’ve now brought Lilou and Carolina togheter, Lilou will interview Carolina after our lunch together and I’m there as the glue! I just can’t believe that all of this is happening!

I’ll report back to you when that meeting has taken place 🙂  Until then I really urge you all to sit down and map your dreams, visions and goals by getting a stack of amgazines, a glue stick and a fairly big piece of paper in front of you and get creative!

Or if you feel that you don’t have space to put it somewhere, use a photo album that you can a) do smaller, themed vision boards in abd b) put away after you have looked at it for the day 🙂

Signing off and flying to Sweden on Monday!

 

How we dealt with the terminal diagnosis of our baby daughter

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This post is mostly for you that might be in the same situation that we were in 5 years ago. I just want to say, although you honestly don’t think you are going to survive – I mean, how can you when your child dies – you do survive! Somehow you do.

We decided on creating this “fairy tale” about Ingrid being a very old soul that only needed a huge boost of unconditional love to rise to the next level, and that we had to respect Ingrid’s life journey. She had chosen us as her parents because she counted on the support and unconditional love she needed to survive as long as she could. The diagnosis was what it was and we couldn’t change that, so we might as well do the very very best we could, and I’m SURE that every parent would. For us it was pointless to start asking “Why us?”, “Why her?” etc. You are never ever going to get a satisfying answer.

The hardest part was that we felt so alone, abroad without our relatives and close friends close by for support (however, a lot of new, beautiful people stepped up and helped us!!). That we just got sent home after getting the diagnosis, without a follow up plan or support system in place made me feel so lost and helpless.

We found ourselves standing outside on the pavement outside the hospital in a dark, wintery Zürich, not knowing if what just had happened was was real or not. It all felt so surreal. I just wish that there had been someone there to offer us a big hug or hold our hand for comfort, but there was no such person. So after Ingrid had passed away, I swore that no one should have to feel that lost and lonely so I volunteered as support family both with Kinderspital Zürich and Kinderspitex (home care unit for palliative care at home) in case anyone else would get the same diagnosis and asking for support. I received a phone call from Kinderspitex last week again, and although it brings back very raw memories, there is no way I’m going to step away from that responsibility.

So here is my offer: if you have just gotten the same, shitty diagnosis SMA type 1, and you are “Googling” (as we did) after what on earth just smashed your life in to tiny tiny pieces, PLEASE contact me! I’m here, I can listen, I can take it!

Lots of love, Karin