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.