My wife speaking at als meeting in Iceland Message List
"Birger Bergmann Jeppesen"
At the 2nd anual meeting of the Nordic als/mnd Alliance this week, my wife gave
this talk:
TO BE A WIFE TO A PERSON WITH ALS
Thank you very much for the invitation to this meeting in Iceland, and for the
invitation to speak about my experiences with ALS. I have been looking very much
forward to this Nordic meeting and to visit your beautiful country.
All wifes and husbands, to persons with ALS, will have a lot of feelings and
experiences in common. But we also have our own experiences and our own way of
overcoming the difficulties. I hope, that my experiences can be useful to
others. And you are very welcome to ask me questions after my speech.
Overhead
I am married to Birger, and many of you have met him last year in Denmark. He
would have given his one arm for the possibility to be here in Iceland on this
meeting, but he is unfortunetly not able to manage the journey up here. It is
the same problem for Birgit and Ingrids husbands. They would also very much have
been here today. But Jens, Walther and Birger send you all their best regards.
Birger and I have now been living with ALS for 10 years. Birger lost his voice
in 1998, and speaks with his eyes. In 2000 he got a ventilator and today he is
living a good and active life. He still has lots of plans and still enjoys life.
Because Birger is happy for the life his is living, I am also happy. I am also
very thankful. I am thankful that Birger is still alive, without the ventilator
he would have died some years ago. I am also very thankful Birger is living his
life with ALS in such a positive way, and because his work and activities gives
his life so much meaning. I am very proud of him. He gives my life meaning.
To get the diagnosis ALS is, as you very well know, a nightmare. That I don't
need to describe to you. I just want to tell you about something I said to
Birger a couple of days after we got the diagnosis. " Oh, Why didn't you get
cancer instead of ALS, then you at least would have had a chance". Imagine, that
I wished Birger had cancer! But it only shows how heart-breaking and desperate I
felt.
Fortunately Birger and I have been able to face the facts, looking ALS straigt
into its eyes so to speak. We faced the sorrows, the losses and death. I tried
to imagine Birgers death and funeral, and how it would be to live without
Birger. I really tried to think as far as I could. I know, it is not possible to
prepare yourself completely on death, but maybe it does help you somehow, that
you have tried to realize the feelings you get, by that kind of thougths.
We got on with our life and today we can say that we have learned to live with
ALS. We both have a good and meaningful life. In our everyday life, we don't
think about ALS all the time. It is there naturally, but we do not use a lot of
mentally and emotionally energi on it any longer. We now have a reserve of
power, and therefore we have the possibility and pleasure to offer others our
help and support.
You, me and ALS
Overhead
This heart illustrates Our marrige and love for each other. But we have a third
part in our marriage - ALS. Around the heart we have the rest of the world. I
have only mentioned a few things of all the things we are under the influence of
and also can put our influence on.
When ALS comes into ones life, there suddenly is a third partner in the marrige.
ALS becomes a part of your relationship, it can not be pushed away. It is why it
is important to recognize ALS as a part of the marrige and try to get as good a
relationship to it as possible. It is a very difficult and hard proces, that
takes a long time. There is a lot of feelings to work with. All the losses of
the normal functions, that enter your life the one after the other, and often
with a speed, that is difficult to follow emotionelly. Then all the things you
will miss. A big hug, to be able to travel you two alone, walking hand in hand,
hearing the sound of your partners voice etc, etc. And then there is the sorrow
you have, kvowing that you are going to loose your partner in maybe a few years.
The person with ALS have the sorrow, that he has to leave his partner and family
and that they will be left behind with the grief.
But there is no other way, than facing the facts, in order to get the most out
of life. It is, as it is for all people, important to focus on the positive
sides of life and on the possibillities instead of the problems. We get periods
in our life with ALS, where it is nearly impossible to see anything positive.
The problems can be so massive, that we don't have energy for other things. It
can be very hard to have all the practical work, also the assistance and help to
the partner with ALS, and at the same time have to cope with sorrow and worries.
In a relationship, there is 3 to be nursed and taken care of - there is you,
there is me and there is us. I have to have some time for myself, you have to
have some time for yourself and we must also have some time together. When ALS
enter our lifes, it will disturb that balance and it will change the normal
roles we have in our lifes. The person with ALS will not any longer be able to
take care of all his normal jobs/tasks, but needs more and more help. And the
partner gets new and also many time-consuming jobs. Her time for herself gets
less and less. Also too little sleep and rest are often a big problem. In the
long run it is destructive physically and psychologically. For the person with
ALS it is very hard to witness that the partner has these hard conditions.
A partner to a person with ALS, have the right to have time for herself, the
right to sleep and the right to peace and quiet, just like everybody else.
Otherwise it is not possible to carry on coping with the demands ALS gives. It
will not be possible to keep up the spirit and the good mood. With that you can
not be the support you want to be for your partner with ALS. The feeling of not
doing a sufficient job, gives a low selfconfidence, and it only gives problems.
Therefore, and it can not be said too often, it is important that the society
offers the help that is nessesary. And it also has to be the right kind of help.
Both must have the possibillity to be able to keep their activities and have
time for themselves. In that way they also can be better partners to eachother.
Help and helpers
Birger and I are not in any doubt that the system with personal helpers is the
best help you can get. It gives us both the possibillity to have our own
activities, and also to do things together. We would not be able to travel alone
to our sommerhouse and stay there for 14 days without the helpers. We would not
have been able to travel to a konference in Düsseldorf in Germany, and we would
not have been able to participate in the Nordic Meeting last year on Musholm
without the personal helpers. I could not have keept my job as a nurce 30 hours
a week, and also feeling safe by leaving Birger in the care of others, if not we
had our personal helpers. And I certainly would not have been here in Iceland on
this meeting.
Birger makes his own decisions. The helpers are his legs, arms and voice, so
that Birgers decisions can be carried out. It is important that every human
being is the boss in its own life. The feeling of not having the control over
your own life can not be healthy.
Of course we both have to get use to nearly always having helpers around. It is
also a proces to learn how to manage that, and also how to be an employer. It is
important that the relationship between Birger and the helpers is good, but also
that the relatonship between me and the helpers is good. The helpers are persons
that get very close to us, and our life, so it is important that we agree in who
we are emploing.
The advantages with the personal helpers are however so many, that it is
absolute possible to learn to live with the disadvantages.
Get together with others in the same situation - it is, as I am sure you already
know, the best you can do to help yourselves. No one can understand how it is to
get ALS into ones life, better than people in the same situation.
Overhead
I am a member of a group of wifes, and we have now existed for 8 years. The
group is also for husbands, but for the moment, we are 8 women. We meet once a
month for 3 hours. The group is a place where we can "unload" whatever we are
filled up with. We can exchange our experinces, share our sorrows and our
pleasures. We have made a few rules for the group, and one of the most important
is the promise of secrecy. We all have to feel sure that we safely can talk
about everything we need to talk about. The promise of secrecy is also a rule
that applies to our husbands. Not because we want to have secrets for them, but
some of our husbands know eachother, and every-one in the group must feel
absolutely sure that the things they tell the others not are for other peoples
ears. There can be subjects which are difficult or impossible to talk with your
husband about, and there can be subjects that you don't want to share with him
in order not to put a strain on him.
In order to help your husband, it is necessary that you help yourself!
All partners to a person with ALS needs other partners to talk to, and I can
only recommend to start the kind of group I have been talking about.
It can though, be difficult to start a group, if the geographic distance is to
big. It also can be a problem to leave the partner with ALS alone at home. And
it is important that not all in the group are in the first phase of shock,
because the diagnosis ALS is new to them. Then they cannot give eachother the
necessary support. It gives a better group, if some of the members have
experiences with the life with ALS. In our group we are some, who have a long
experince, 2 who are widows and 2 who are quite new. It gives the right
conditions to help eachother.
From the start of our life with ALS, I knew that, I wanted to stay on the job
market. It was and still is important to me to work and keep my profession
updated. I need the impulses it gives. It would not be healthy for us, if we had
to be together all the time. Because we have the helpers, as I mentioned
earlier, and because I have a flexible and understanding place of work, it has
been possible for me to both manage my job and to manage all the things at home.
It is up to the individual person and family to find out what the best solution
is, how are we going to organize our life? And then go for it. But of course it
is nessesary that the society makes the right possibillities available.
Even if a Partner chooses to leave the job-market and stay at home with her or
his partner with ALS, it is important that the couple still gets enough help.
The partner cannot manage it all alone 24 hours every day. She or he still have
the right to own activities, the right to enough sleep and the right to peace
and quiet.
The ventilator
Overhead
Birger and I divide our life into a life before the ventilator and a life after
the ventilator. We fully realize a difference between before and after. Before
the ventilator life was full of worries and anxiety. How long will Birger live?,
will he get a pneumonia he cannot survive? How will his death become? Will he
psychological be able to continue managing his disease? Will I be able to
continue managing everything? Etc. Etc. We also, particularly the last year
before Birger got the ventilator, didn't get enough sleep. We were awake several
times every night, and sometimes nearly the whole night. So we were tired and
without energy most of the time. It was hard work physical and psychological.
Life was full of situations where we couldn't always see how to manage it all.
After Birger got the ventilator the energy, spark of life and vitality have
returned.
Birger hasn't had any lung-problems during the six years on the ventilator, he
sleeps like a baby, and is living an active life. The horizon of time in regard
to death has changed. Death has become less present in our life or in our
thoughts. We also don't have to worry any longer about all the losses. Exept for
the ability to use his eyes and to smile, there is no more to loose. So we now
have a life with a peace and a feeling of security, that we did'n have before.
To say "YES" to the ventilator is not the right choice for every person with
ALS. It can be the right decision to say "NO THANKYOU". It is a difficult
decision to make, and we will have to remember, that it is at least as difficult
to say "NO" as it is to say "YES". But the offer of a ventilator must be a
reality, as I see it. It is then the Person with ALS, who has the choice if she
or he wants to live on with the conditions ALS gives.
When Birger suddenly one day in 2000 felt that he wanted to live on on a
ventilator, he wrote to me on the computer: "Dear Jutta, If you still think you
can hould out/endure life together with me for yet a little time, I will ask you
to phone the hospital (respirationscenter Vest), and tell them, that I want to
have a ventilator as soon as possible."
Birger very well knew, that I would go with him all the way, no matter which
decision he took. But even if he mostly wrote this, in order to tell me his
decision, it was also a need just to be confirmed, that I realy wanted to go
with him all the way.
It is of course only the person with ALS, who can make the decision, but it is
nessesary, that also the partner is positive to that decision. Otherwise the
chance to get a happy life together can be doubtful.
A big responsibility is put on the shoulders of the partner, and that
responsibility the partner must be ready to take. The helpers can make a lot of
the practical work, and they are of course responsible for the work they do and
for the safety for the person with ALS. But when there is a partner she will
naturally be the one who gets the biggest responsibility. She will automaticaly
be in charge, and be the one who makes sure that everything is up to standard,
for exampel the hygiene. She will also often be the one who educates the
helpers, a time- and enegy-demanding job.
To live with a ventilator, demands that both in the marrige are positive to a
life full of helpers. Helpers, who are present in the home 7 days a week. It is
possible to get use to that, and when you find, that the advantages are many
then the disadvantages is easier to accept.
Communication
Overhead:
I often say that the loss of my voice is the worst of the many losses ALS gives
Recently somone asked why
Here is my answer:
With a voice you can say words of love
With a voice you can cry and laugh
With a voice you can argue
If you cannot walk, you can compensate with a wheelchair
But you can never compensate the tone of a voice
These are Birgers words, and as you can understand, he find that losing the
voice is the worst loss of all the losses. If, Birger could chose between the
ability to speak or to breath, he would chose the ability to speak. For me the
loss of Birgers voice also is the biggest loss, and for the same reasons.
Some of a persons identity is in the voice, so it is a big loss. Today we don't
think about it, because we for many years now, have lived without Birgers voice.
But when I hear Birgers voice on a tape-recorded conversation, a lot of feelings
is filling me up, and I for sure feel the loss. Birger does not always get the
chance to say all the things he wants. In the company with many people, it can
be difficult to participate in the conversation. And Birger and I cannot have a
argue on fair conditions - I will always be in possesion of the
"remote-control", and I can get the last word, if I want to. So I have to be
aware of that problem and try to be fair. Not always easy, if it is the feelings
that controles you and not the common sense. Birger has to be a patient and
forgiving man. And he is, thank God!
Our communication is based on some other demanding conditions, than normal. It
takes patience, time and concentration. But again we have to look on the
positive sides. Birger is able to communicate, and it is the most important
thing. Without that possibility, Birger would not find life worth living. Birger
is able to speak with his eyes and he luckily also can smile. I am very greatful
for that. The eyes can tell a lot without words, and sometimes I feel Birger is
able to give me a big hug with his eyes.
Ad tala med augunum! Speaking with the eyes!
is a film, many of you are familiar with. The film shows how to communicate with
the eyes. I have brought the film with me, it is in english, and you can by it
if you would like to have it. I know Gudjon also have it in icelandic.
Quality of life
Overhead
When we talk about quality of life and of dignity, there is two important
factors. The conditions we are offered and which attitude we have to life. These
two factors are decisive for what kind of quality of life we have.
To get a good life, you need help, remedies, a car etc. Etc. Conditions among
many others. The attitude to life is, on the other hand, something individual
and something that can change. But so very important for your quality of life. A
possitive attitude or a attitude of bitterness makes all the difference.
To keep the balance my conviction has been a great help to me. A conviction,
that
Birger shares. We believe there is a meaning with everything, also with ALS. We
have a confidence to life and the meaning of life, and because of that we feel
secure. Somehow it makes it easier to live, when the whole matter not just are
meaningless, even I don't know the full meaning why Birger got ALS.
Besides that, I use a quatation from Karen Blixen, a famous danish author, who
wrote "My africa". A story, that was made into a film, with Meryl Streep and
Robert Redford in the main characters.
Overhead
You must love your destiny, say yes to what you have got, and not wish for
something completely different.
It does not mean, that we should not try to change the things, that needs to be
changed. We must not just close our eyes and accept everything. But we must look
at the life we have got and try to get the best out of it. It does not help that
we are dreaming of another life - that we try to escape from reality. Life is
too precious for that. It has to be lived here and now.
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