When we started writing about Lars' illness - perhaps to open more up about the difficult journey of dementia and Parkinson's - we could't have imagine where this journey would take us. There have been ups and downs. Unfortunately, this is a difficult part of the journey.
In the past month I have felt like giving up several times! I have prayed and prayed for strength and insight to understand the meaning behind what is happening around us.
If I didn't experience it myself, I would think it was either exaggerated or free imagination.
Shortly after my last post, it all went wrong. In short, Lars has been hospitalized 3 times in one month. The first 2 times he had liver coma. The last time, with gastroparesis. Which put the liver out of action and thus a 3rd "ugly" liver coma.
Eventually, his Parkinson's began to take over. He began to have difficulty walking. He had difficulty eating and I had to feed him. This I did gladly, but cried within, as I ached so much for his sake. I don't understand why he has toenduregh so much.
When I first bought this plate, Lars refused to eat from it. "He didn't need something like that!"
Lars has now asked me to find it. He has realized that he can't eat from an ordinary plate. This plate has curved edges, which cause the food to "fall" back onto the cutlery when it is pulled up to the edge.
The 2nd time he was hospitalized, I learned that these bouts of lliver cirrhosis will manifest more and more frequently, in the time ahead.
He has now started on 2 types of medicine - as an experiment. There is no subsidy for them. But the hospital will apply for funding via the Danish Medicines Agency.
Here the last time, I myself was hospitalized! It was so surrealistic to lie in one place and know that my beloved husband was lying and fighting somewhere else. Our daughter went back and forth between us. At one point she took a picture of Lars, which made me so uneasy that I asked to be discharged. They didn't agree to that, but the doctors said that I could visit Lars and reassure him - if only I came back quickly.
We are now both finally discharged. Lars' numbers are stable, but not "normal".
As he is now to well to stay at the hospital, and not ready to come home, he has come on nursing home. He will be there for 7-14 days. It will be difficult for me, I would rather have him home. However, I am not trained to take care of him. The thought of overlooking symptoms that I should be responding to, scares me.
We know that the diagnoses (Dementia, Parkinson's, diabetes and liver cirrhosis), he has are all life-shortening. But it's hard to see the one you love having such a hard time.
Finally, thanks to everyone who has listened and helped us recently. Thank you very much.~
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Da vi begyndte at skrive om Lars' sygdom - for måske at åbne mere op om demens og Parkinsons svære rejse - var vi ikke klar over hvorhen rejsen ville føre os hen. Der har været op - og nedture.
Desværre er dette en svært del af rejsen.
I den forgange måned har jeg flere gange haft lyst til at give op! Jeg har bedt og bedt om styrke og indsigt til at forstå meningen men hvad der sker omkring os.
Hvis jeg ikke selv oplevede det som sker, ville jeg tro det var enten overdreven eller fri fantasi.
Kort efter mit sidste indlæg, gik det helt galt. Kort sagt, Lars har været indlagt 3 gange på en måned. De 2 gange var med leverkoma. Her den sidste gang, med gastroparese. Hvilket satte leveren ud af funktion og dermed en 3. "grim" leverkoma.
Til sidst begyndte det at gå ud over hans Parkinson. Han begyndte at have svært ved at gå. Han havde svært ved at spise, og jeg måtte made ham. Dette gjorde jeg med glæde, men græd indeni, da jeg smertede på hans vegne. Jeg forstår ikke hvorfor han skal så meget igennem.
Da jeg første gang købte denne tallerken, nægtede Lars at spise af den. "Sådan en havde han ikke brug for!" Lars har nu bedt mig finde den. Han har indrømmet, at han ikke kan spise af en alm. tallerken. Denne har buede kanter, som får maden til at "falder" tilbage på bestikket, når det køres op ad kanten.
Den 2. gang han var indlagt, fik jeg af vide, at disse anfald af leverkoma vil blive manifisteret oftere og oftere i tiden der ligger foran os.
Han er nu begyndt på 2 typer medicin - som et forsøg. Der er ikke tilskud til dem. Men sygehuset vil søge om tilskud via Legemiddelstyrelsen.
Her den sidste gang Lars var indlagt, blev jeg selv indlagt samtidig! Det var surrealistisk at ligge et sted, og vide at min elskede ægtemand lå og kæmpede et andet sted. Vores datter gik frem og tilbage imellem os. På et tidspunkt tog hun et billede af Lars, som gjorde mig så urolig, at jeg bad om at blive udskrevet. Det ville man ikke gå med til, men lægerne gik med til, at jeg kunne besøge Lars og berolige ham - hvis jeg blot kom hurtig tilbage hurtigt.
Vi er nu begge endelig udskrevet. Lars' tal er stabile, dog ikke "normale".
Da sygehuset ikke kan gøre mere for ham, og han ikke er fuldstændig i stand til at komme hjem, er han kommet på aflastning. Der skal han være i 7-14 dage. Det bliver svært for mig, jeg ville hellere have ham hjem. Jeg er dog ikke uddannet til at tage mig af ham. Tanken om at overse symptomer, som jeg burde reagere på, skræmmer mig.
Vi ved godt at de diagnoser han har, (Demens, Parkinsons, diabetes og levercirrhose, alle er livsforkortende. Men det svært at se den man elsker have det så svært.
Til slut, tak til alle som har lyttet og hjulpet os den sidste tid. Tusind tak.
Oh Conny, my heart just breaks for you. These illnesses have been so cruel on both of you. It is understandable that you would be feeling very low, just watching the struggles that Lars faces and thinking of what he has lost. It is easy to say that you must take care of yourself too, but how do you do that when all this is going on. I really hope you are able to find strength in your faith and in the love of your family and friends. I also hope you continue to find a little bit of joy in your crafting, which takes your mind somewhere else, if only for a little while.
SvarSletPlease know that I am thinking of you and sending my love.
Beccy xxx
Thank you Beccy. You have been so kind to me, even though we have never met. I love playing with your stamps. Your stamps ooze warmth. I always get into a good "place" when I begin to stamp - using your stamps. Have a blessed day.
SvarSlet