A LONG update

Again a digi stamp from Beccys Place, it's called:
You're A Hoot 
You know how much I love Beccys digi stamp.
I can't begin a new blog post, without showing a digi stamp from her shop.

Hi Everyone

It's been a long time since I last wrote - and a lot has happend the last 3 months. Very few have been informed about the extent of what has happened.

My intension has not been to stop writing about our journey in this challenging universe of dementia/Parkinson's, dysphagia, diabetes and cirrhosis. It's been more about us - probably more me - finding my role as a wife and caregiver. Many things have simply been put on "stand by": I love making cards. I find it incredibly challenging to participate in Beccy's November challenge. Participating in the Christmas market where Kami lives. Making Christmas gifts for the Carecenters outdoor group, as a thank you for their work - all things I haven't had the energy to do.

As I wrote in the previous post, we were in Skejby to have Lars evaluated. They told us, that Lars have about 2 years to live and then his liver will problebly give up. However, that was on the condition that he did not get sick from other things...

Only a few weeks later Lars was hospitalized again. Again with liver problems. It was hard, since we had just been in Skejby. The meeting was still very clear in my memory.

The autumn went by quickly, every day with the same routine:

1. The home care comes at 8 o'clock, Lars gets up, gets washed and gets dressed.
2. Lars has breakfast. It takes a lot of energy, and therefore he often falls asleep.
3. Lars goes back to bed. 
4. At 12-1 pm he gets up and gets something to eat. If he is too tired to eat, he gets a protein drink instead, and he sleeps again. 
5. Some days he gets up for a couple of hours in the afternoon. These are days we are happy about.
6. After dinner, when he often falls asleep again, the helpers come and puts him to bed.

Routine is something Lars appreciates. We are blessed with few helpers coming. Lars reacts when there are new faces. It makes him restless. When they have left, he often asks me: Why? He is right, why? We have an agreement that we will be called if the outgoing group has to send someone Lars does not know. It just doesn't happen. We have a good collaboration with Care centers outgoing group, for sure, but in this area it just doesn't work.

On New Year's Eve, Lars was hospitalized. He was babbling, and at times very confused. A nurse gave him fluids: There are many who are dehydrated, so it's probably the same here!!! The next day he was discharged!!!

A week later he fell in our bedroom. I called the Care centers outgoing group.  When you fall, a "fall report" must be made. When you are also taking blood thinners and are over 65 years old, the Care centers outgoing group must contact a doctor. You are often scanned to rule out that something else is going on. That was also what happened to Lars.

Fortunately, the scan did not show anything, so we were allowed to go home again. But ... the scan showed that there recently had been a blood clot!!! I asked the doctor, if that could have been what had happened on New Year's Eve? She said, yes, most linkely. I felt guilty for not having caught on to it. About 6 years ago he had many small, temporary blood clots. 

Right now we think a lot about how to prevent Lars from falling again. Just this last week he has fallfrom the fact that last week Lars fell twice: Wednesday and Thursday.

He is becoming more and more unsteady on his feet, and is therefore sitting in his wheelchair more.

On Wednesday, he wanted to take something from the bottom shelf of a bookcase - his legs locked and he swayed back and forth. I just managed to grab him and support his head so it didn't hit the floor.

Thursday morning at 6 o'clock, he fell out of bed. He hit the bedside table before he hit the floor. I woke up with the sound of the 2 bumps! I must admit, I screamed, I was scared. Kami was home and woke up when I shouted for her to come and help me.

We called the Care centers outgoing group, and they took over. I sat shaking in the living room. It was a violent incident - and at the same time Lars was calm! He couldn't remember what had happened!

I am grateful that Kami and the home care were here. This time I couldn't handle it. Kami is a rock in these situations. Afterwards she reacts. 

Our daughter-in-law, Mia, came with Lars and I, to an interview at the hospital, with Chief Physician Asser. In the future, she will come along. If she can't, Lars' sister Inger has promised to go with us.

Why? There have been a few people who have directly said to me: Aren't you overdramatizing? Is it really that bad? No doctor sets a time limit on how long time you haveleft! I needed someone else to hear these things. To be my witness! I am grateful that Chief Physician Asser took the time to tell us, that what I had said was true and properly understood.

He also went through what we can expect will be the next challenges Lars will face. He said, that Lars would start coughing when he eats. This would weaken Lars more than he needs.

Mia looked at me. I told her, that if she has something she wants to say, she should do it (or something along those lines). Mia then says: He already does!!! I must admit, that I am failing once again. I had not considered that it could be a problem that he was coughing. Thanks to Mia. She is fantastic. She says things as they are. I am grateful that she is my daughter-in-law.

The day after this conversation, I contacted the Care centers outgoing group, to inform them about the conversation with Chief Physician Asser.

The person I spoke to turned out to be the person responsible for the dysphagia area. What a blessing! She came over to us the very next day - and things happend very quickly from there. She contacted those who prepare food for the sick in Randers. Within a week, we had a meeting, Anette from Home Care Outgoing Group, Helle from Food Service, Lars, Mia and I. The result was that Lars shall have food from Food Service. He shall have enriched, creamy food. It is something I cannot make. It doesn't look very inspiring, but Lars says it tastes good. 
It is an expensive food - one that we cannot afford, at all. At the same time, he also gets protein drinks. In total, it comes to almost 3000 DKK pr. month. I am grateful that our church will help pay for it.

There has also been something positive, and that should not be forgotten.

Christmas was fantastic. The family was gathered with us. Mia's father, Flemming, and brother, Peter, traveled all the way from Sjælland to be with us. Like Mia, they are wonderful people. Honest and straightforward. These are qualities I appreciate.

Our son-in-law, Aske, listens when I am frustrated and worried. We have talked a lot about going to the Temple in Copenhagen. It is a long way, and I can't drive that far. What does he do then? He drives Kami and I back and forth - on the same day. How grateful I am for him. He has a spiritual insight that I admire.

What I have learned from the last 3 months:

1. To live while we have the opportunity.
2. To appreciate simple things.
3. That love never dies.
4. That we are given new opportunities - if we want to accept them. 
5. That life does not stop because we are challenged.
6. That just because others do not understand our challenges, it does not make them any less real and important.
7. That we can choose to grow and become strong when the wind against us feels like a hurricane.

~~~~~~~~~~~~~~~~~~~~~~~~~~

Hej Alle

Det er længe siden jeg sidst skrev - og rigtig meget er sket de sidste 3 måneder.
Kun få har været informeret om omfanget, af hvad der er hændt.

Det har ikke for at stoppe med at skrive på bloggen, om vores rejse i dette udfordrende univers som demens/Parkinson, dysfagi, sukkersyge og skrumpelever er. Det har mere været, at vi - nok mere jeg - skulle finde min rolle som hustru og plejer.
Mange ting har simpelthen været sat på "stand by".
Jeg elsker at lave kort. Jeg synes det er fantastisk udfordrende at deltage i Beccys November udfordring. At deltage i julemarkedet hos Kami er så givende. At lave julegaver til hjemmelejens udegruppe som tak for deres arbejde - alt noget jeg ikke har haft overskud til.

Som jeg skrev i det forrige indlæg, var vi i Skejby for at få Lars vurderet. Her mente man at Lars med held, ville have ca. 2 år at leve og så ville hans lever ikke kunne klare mere. Det var dog under den forudsætning, at han ikke blev syg af andre ting...

Kun et par uger senere blev Lars indlagt igen. Igen med lever problemer. 
Det var hårdt, eftersom  vi lige havde været i Skejby. Mødet der, sad så tydelig i min erindring.

Efteråret gik hurtigt, hver dag med den samme rutine:

1. Hjemmeplejen kommer ved 8 tiden, Lars kommer op, bliver vasket og kommer i tøjet.
2. Lars får morgenmad. Det tager mange kræfter, og han falder derfor ofte i søvn.
3. Lars kommer i seng igen. 
4. Ved 12-13 tiden kommer han op og får noget at spise. Er han for træt til at spise, får han en  proteindrik i stedet, og han sover igen. 
5. Nogle dage kommer han op et par timer om eftermiddagen. Det er dage vi er glade for.
6. Efter aftensmaden, hvor han ofte igen falder i søvn, kommer hjemmeplejen og lægger ham i seng.

Rutine er en ting Lars sætter pris på. Vi er velsignet med at det er få hjælpere der kommer.
Lars reagerer når det er nye ansigter. Det gør ham utryg. Han går mere ind i sig selv, og når de er gået, spørger han mig: Hvorfor? Det har han ret i, hvorfor? Vi har en aftale om at der skal ringes til os, hvis der kommer afløsere som Lars ikke kender. Det sker bare ikke. Vi har et godt samarbejde med Hjemmeplejen, helt sikkert, men lige på dette område fungerer det bare ikke.

Nytårsaften blev Lars indlagt. Han vrøvlede, og var i perioder meget uklar.
En sygeplejerske gav ham væske: Der er mange som er dehydreret, så er nok det samme her!!! Dagen efter blev han udskrevet.

En uge senere faldt han i soveværelset. Jeg ringede til Hjemmeplejen.
Når man falder, skal der laves en "fald-rapport". Når man samtidig får blodfortyndende og er over 65 år, skal hjemmeplejen kontakte en læge. Ofte bliver man scannet for at udelukke at der er sket noget. Det var også det som skete med Lars.
Scanningen vise heldigvis ikke noget, så vi måtte gerne tage hjem igen. Og dog... scanningen viste at der for nyligt havde været en blodprop!!! Jeg spurgte lægen, om det kunne have været det, som var hændt nytårsaften? Han havde jo vrøvlet og været uklar. Det mente hun!
Hvor fik jeg dårlig samvittighed, over ikke at have fanget det. For ca. 6 år siden havde han nemlig mange små forbigående blodpropper. 

Lige nu er vi så ved at komme os over, at  i sidste uge faldt Lars 2 gange: Onsdag og torsdag.
Han bliver mere og mere usikker på benene, og sidder derfor mere i kørestolen.
Onsdag, ville han tage noget fra den nederste hyld i reolen - hans ben låste sig fast, og han svajede frem og tilbage. Jeg nåede lige at få fat i ham, og støtte hans hoved, så det ikke hamrede i gulvet.

Torsdag morgen ved 6 tiden, faldt han ud af sengen. Han ramte  sengebordet, før han ramte gulvet. Jeg vågnede var de 2 bump, det gav da han ramte gulvet. Jeg må indrømme, jeg skreg.
Kami var hjemme og vågnede, da jeg råbte på hende. Hvor blev jeg bange.
Hjemmeplejen blev tilkaldt, og de tog over. Jeg sad og rystede i stuen. Det var en voldsom hændelse - og samtidig var Lars rolig! Han kunne ikke huske, hvad der var sket!
Jeg er taknemmelig for at Kami og Hjemmeplejen. var her. Denne gang kunne jeg ikke håndtere det.

Vores svigerdatter, Mia, har været med til en samtale på sygehuset, ved Overlæge Asser. Fremover tager hun med. Kan hun ikke, har Lars' søster Inger, lovet at gøre det. 
Der har været et par stykker, som direkte har sagt til mig: Overdramatiserer du nu ikke? Er det virkelig så slemt? Ingen læge sætter tid på, hvor langt man har igen!

Jeg havde brug for, at en anden hører disse ting. At være mit vidne! Jeg er taknemmelig for at Overlæge Asser, tog sig tid til at fortælle, at det, jeg havde sagt var rigtigt, og rigtig forstået.
Han gennemgik også det, som vi nu kan forvente, vil blive de næste udfordringer, Lars vil få.
Han mente, at Lars ville begynde at hoste, når han spiser. Det vil blot afkræfte Lars mere end han har brug for.
Mia kikker på mig. Jeg siger, at har hun noget, hun gerne vil sige, så skulle hun gøre det (eller noget i den retning). Mia siger så: Det gør han allerede!!!
Jeg må flovt erkende, at jeg endnu en gang svigter. Jeg havde ikke overvejet, at det kunne være et problem, at han hostede, Jeg havde ikke lagt mærke til det. 
Tak til Mia. Hun er fantastisk. Hun siger tingene som de er. Jeg er taknemmelig for at hun er min svigerdatter.
Dagen efter denne samtale, kontaktede jeg hjemmeplejen for at informere om samtalen.
Hende jeg talte med, viste sig at være den ansvarlige på dysfagi-området. Hvilken velsignelse!
Hun kom over til os allerede dagen efter - og så  gik det hurtigt. Hun kontaktede dem som laver mad til syge i Randers. Inden for en uge, havde vi et møde, Anette fra Hjemmeplejen  Helle fra Madservice, Lars, Mia og jeg. Resultatet blev, at Lars skal have mad fra Madservice. Han skal have beriget, cremet kost. Det er noget jeg ikke kan lave. Det ser nu ikke særlig inspirerende ud, men Lars siger det smager godt.
Det er en dyr kost - en som vi slet ikke har råd til. Samtidig får han også proteindrikke. Sammenlagt bliver det næsten 3000 kr om måneden. Jeg er taknemmelig for at vores kirke vil hjælpe med at betale for det.

 Noget positivt har der også været, og det skal ikke glemmes. 

Julen var fantastisk. Familien var samlet hos os. Mias far, Flemming og bror, Peter tog den lange vej fra Sjælland for at være sammen med os. De er ligesom Mia nogle dejlig mennesker. Oprigtige og ligefremme. Det er egenskaber jeg sætter pris på.

Vores svigersøn, Aske, lægger øre til når jeg er frustreret og bekymret. Vi har talt meget om at tage til Templet i København. Det er en lang vej, og jeg kan ikke køre så langt. Hvad gør han så? Han kører Kami og jeg frem og tilbage - på samme dag. Hvor jeg er taknemmelig for ham. Han har en åndelig indsigt, jeg beundrer.

Hvad har jeg lært af de sidste 3 måneder:

1. At leve medens, vi har muligheden for det.
2. At påskønne enkle ting.
3. At kærligheden aldrig dør.
4. At vi bliver givet nye muligheder - hvis vi vil tage imod dem. 
5. At livet ikke går i stå, fordi vi udfordres.
6. At fordi andre ikke forstår, vores udfordringer, gør det dem ikke mindre rigtige og vigtige.
7. At vi kan vælge, at vokse og blive stærke, når vinden imod os, føles som en orkan.

Stilhed!

Beccys place November challance is on... To days letter is "H".

H= Horizon. I think it looks cold! The ice bergs look like Greenland. Where Danes believe Santa comes from.

Nice to be able to report that it has been "almost" quiet here at home.

Lars visited Skejby University Hospital where he spoke to a specialist in neurology. The hospital in Randers, where we live, and where Lars is hospitalized when he gets sick, had asked the doctors in Skejby to assess whether or nat, there was anything they could help.

As expected, the answer was that there was not anything we coul do! We spoke openly with the specialist about our attitude to the end of life: that there should be no unnecessary treatment, for example in the case of cardiac arrest, pneumonia, etc. that is, if the future is only to lay like a "vegetable".

We told him, that we have found the place where Lars would like to be buried, and that we are know that the  diagnoses he has, are all life-shortening. The doctor then told us, that it will be the liver that will end Lars' sufflerings.  

After the we drove to Lars' sister Inger. Lars didn't know that. It was nice to be able to surprise him. It was so good to see Inger again.

The week after Lars and I had been to Skejby University Hospital, I sat there myself, together with my daughter-in-law.  I went here to find out,  if I should have another operation for the new 3 herniated discs that I have. They have chosen not to operate. An operation with stiffening my bag, will not have much chance of success, and the pain will probably only get worse. I was really happy that my daughter-in-law Mia was with me. It gave the opportunity to talk about it afterwards.

Right before we went out the door, after the consultation, the specialist gave me some advice. looked me in the eye as he said: 

Do the things Lars wants, NOW. Later it is too late.

This is good advice for all of us. Enjoy the time together - do what makes you happy, what builds you up, what strengthens you. Create memories. Make a difference - before it's too late.

Hej
Dejligt at kunne berette at der næsten har været stille herhjemme.
Lars har været på besøg på Skejby Universitets Hospital hvor han snakkede med en speciallæge i Nerologi. Sygehuset i Randers, hvor vi bor, og hvor Lars er indlagt når han bliver syg, havde bedt lægerne i Skejby om at vurdere om der var noget som de kunne hjælpe.

Som forventet blev svaret at det var der ikke. Vi talte åbent med lægen om vores holdning til livets afslutning: at der ikke skal være unødig behandling, f.eks ved hjertestop, lungebetændelse ect. hvis fremtiden kun er at ligge som en "grøntsag".
Vi fortalte at vi har fundet det sted hvor Lars gerne vil begraves, og at vi er afklaret med, at de mange diagnoser han har, alle er livsforkortende. Overlægen sagde derpå, at det vil være leveren som tager livet af Lars til sidst. 
Som en overraskelse kørte vi efter samtalen ud til Lars' søster Inger. Lars vidste det ikke. Det var dejlig endelig at kunne overraske ham. Ligeledes var det dejlig at se Inger igen.

Ugen efter Lars og jeg havde været på  Skejby Universitets Hospital, sad jeg der selv, sammen med min svigerdatter.  Jeg skulle have af vide om jeg skulle opereres igen for de nye diskusprolaps som jeg har fået. Det har man valgt ikke at gøre. En operation med stivgørelse vil ikke have stor chance for at lykkes, og smerterne vil med sandsynlighed blot blive værre. Jeg var rigtig glad for at min svigerdatter Mia, var med mig. Det gav mulighed for at snakke om det bagefter.

Lige til sidst:
På vej ud af døren efter konsultationen om Lars, gav Overlægen mig et råd. Han så mig i øjnene, medens han sagde: 

Gør de ting Lars gerne vil, NU. Senere er det for sent.

Det er et godt råd for os alle. Nyd tiden sammen - gør hvad gør dig/jer glad, hvad der opbygger dig/jer, hvad der styrker dig/jer. Skab minder. Gør en forskel - før det er for sent.   

 

I feel so tired!

 

https://beccysplace.com/candy-canes-digital-stamps/ # 30

https://kraftychickschallenge.blogspot.com/ #28

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.

https://seniorshop.dk/tallerken-steelite-stor260550g.html

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.~

~~~~~~~~~~~~~~~~~~~~

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.

https://seniorshop.dk/tallerken-steelite-stor260550g.html

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.