NinaP's Mother

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NinaP

Distinguished member
Joined
May 24, 2018
Messages
151
Reason
Lost a loved one
Diagnosis
04/2018
Country
GR
State
KO
City
Ptolemaida
Mum can only move her right hand now and that is very stiff right now, she hardly lifts her right leg which used to be so strong. She lost amost everything in 4-5 months. Happened so quickly. We were diagnosed in Larisa in a great University hospital, my younger sister lives there. After visiting so many doctors and neurologists. A woman neuro from another city told us that it could be autoimmune and we should go to a good hospital, Till then doctors were telling us it could be phsycological or something since all her tests were great,

They gave us a diagnosis in 3 days, even before the emg, from the clinical image. The EMG just confirmed it, till then i was hoping it was myasthenia gravis. Her head being high and her back makes her breath better? Nobody told us.
I had a doc visit her on Friday to check her breathing he said it was pretty good. This week i would get a nose mouth doc to check her eating and swalloing, she cheked her again about 25 days ago and said it was great and should just eat carefully and slowly. We pay for all that, her insurance only pays for the medicine, we pay all the rest. The doctors get 30 t0 50 euros per visit. We spend about 2500euros per month, and not counting all the tests and doctors before the diagnosis. I also stopped working and that is a leave without pay. Going to check on hospital beds this week and from what i asked its 80euros per month the good ones.

Where i live we have the biggest cancer percentage in Greece, heart and strokes. We are Greeces industrial center with 4 power factories and so much pollution, you can check on line. So we lose 2-3 people per day from that and rather young ones, so people are used to that and dont care to demand better things. Closed ones and close friends were telling me at first that i should be happy mum reached 70 since so many die much earlier here.

Imagine that we had to wait almost over am onth to start therapy waiting for the medicine because its so rare. And now that the first bulk is almost over the second one is not here year and i have to go check tomorrow and mum most likely is going to be without her medicine for a couple of days. Its like telling you leeave her bedridden and hope for a peacefull death. I myself have started begging for a peacefull death and hope she wont live all those terryfing things.

This morning was my first outing in 3 days. Went for a coffee, and mum called to ask when i was coming back even though my younger sister was with her.
These past 5 months iam so sick of doctors and hospitals. We lost our dad aafter 6 years of being sick and seeing mum like that. You guys telling me to go check myself but iam so scared you know. Scared. Phew. I dont want to go to another doctor. We just eated our first ice cream for the season and it was great. But mum is so down right now mentally. We carry her from bed to couch with a wheelchair and then back to bed. I dont know what to do to help her more. She wakes up almost every two hours per night.

Thank you all for the messages. Again sorry if i sound so unaware.
 
Re: Question for Cals.

Thank you, Nina, for giving us more information. Even writing here is an extra task for you and I hope you will find it time well spent.

I'm glad your mother's breathing and swallowing is still good. You can talk to her and that is a very very good thing, even when she can be so demanding on your first little getaway. But it shows you how important you are to her. You gave up your income and your freedom for her. Talk to her and maybe tell her that you will take care of her no matter what but that she is your mom and she'll have to take care of you, too. She can be your biggest help when she accepts and sometimes endures other caregivers. She can say thank you that way. If she grasps the importance of keeping you sane and sound it will be easier to be without you for a little while. And when you go out and relax a little you hopefully return in a better mood and have new stories to tell her.

The financial strain sounds horrible. You probably have to prioritize. In my opinion quality of life goes before therapy with a somewhat hopeless disease like this. Anything that will make her feel better. Range of motion exercises, passively keeping her mobile is important. It helps with pain and digestion. A good physiotherapist is often more use than a good doctor.

What kind of medicine does she get? Riluzol? No drug to this date promises to stop or even reverse ALS. It's just slowing it down. With a slow progression that could mean years, with a fast progression it's maybe just weeks of benefit.

The hospital bed is a good investment. It's important to watch your back as a CALS. You said that your mother wakes up every two hours and I assume that you need to turn or move her because she's uncomfortable. We had only two week like that, no sleep for more than 1-4 hours at a time. I was overtired and prone to mistakes all day. Luckily we got a soft foam mattress to prevent dekubitus and lots of special pillows together with some basic knowledge in positioning. It made a huge difference. Good sleep is important for everyone involved. Even more so than ice cream. Ice cream is a good second, I'd say. ;)

That reminds me that I have to stop here and go to bed myself. 2:30 is not completely out of the ordinary for me. Sleeping is not always easy with all those thoughts. But tomorrow is a new day and we'll just have to see how that goes.
 
Mod note: Moved posts to caregiver section.
 
Two very tiring days. We went to check the bed, mum wont sleep much, i was up almost all night and then nonstop all day. Also went for the months shopping with my sister same yesterday too and also suddenly we got so much heat. I feel so tired. My hands feel heavy. Im nervous and spastic dropoing things. My shoulders like they are tight and i feel im bending more while walking. I think my neck issues must be allergy since so many are suffering in my city. Short breath and tight neck and nose. I know all of these must be from being tired but still im so scared. So scared. My sister is so tired too. I dont know for how long we can continue like this. You guys are heroes.
 
Nina, I'm sure it has been a shock to have your Mum diagnosed and need 24/7 care. No wonder you're stressed! I think I read that you are from a big family? Could you have a family meeting to talk about getting some help for you and your sister? I read an article about a monk in Greece that had ALS. He recommended that people contact an organization called ALS Worldwide.

alsworldwide.org

My prayers are with you and your family.
 
The present moment apparently there is no resource help for care in Greece i searched that site. Its so disheartening. My younger sister is coming for the summer to help but she has small kids and im not sure if its good for them to see mum like this since they remember her as strong and vivid. Already they ask why she wont visit them anymore. My older brother helps financially since he cant come apart for an hour due to his work commitments. My other brother lives elsewhere and he is unemployed and is very close to my mum she has helped him a lot and he is in a bad shape since we got the news, he lost so much weight and cries when he sees mum. He hugs her and breaks down.
 
The present moment apparently there is no resource help for care in Greece i searched that site. Its so disheartening.

I was disappointed too when I looked for a location in Greece and didn't find one. But the monk who wrote the article about having ALS in Greece said to contact them. They will talk to you, Skype with you, etc. If anyone knows how to help find support, they can probably do it.

I don't think that it will harm your nieces and nephews to see their grandmother ill. As much as we all try to deny it, it's a fact of life that no one gets out of here alive.
 
Good to hear that your sister is coming to help. Might be the kids will have less issues with their granny's altered state than grown-ups think. Depends on their age. We had friends over with real little kids. The older a bit curious about the wheelchair, the baby straight up beaming at my boyfriend. Had to take a snapshot right away because I haven't seen him this alive in a long time.
If your mother is able to smile (chances go up with kids around) they will get along fine. Plus adults are braver around kids, it will probably be uplifting for all of you.

Living elsewhere, unable to help and then seeing your mum with huge stretches of progression between the visits is probably harder for your brother than staying with you for a while and helping out. I clearly don't know the situation there, if you could get away.
It's just a very personal observation how important it is to close friends and family to not miss their PALS. Missing as in "maybe never having the chance to see him again".
 
Presentmonster i read Robs posts and the rest about their relatives last moments and i dread that time. I wonder where i would take my mum? In those moments? There are no hospices here in Greece. I dint want to think about it. Still hoping for a miracle.
 
You don't have to take your mom anywhere if you have help at home. (Just so you're not on duty 24/7) If there is a doctor who unterstands about palliative care who will write you scripts for morphine and stuff like that she won't have to leave her home.
We visited a hospice right in our neighborhood, just to get an expression and to have a plan B in case I crack under the pressure. By now I wouldn't want to expose my PALS to this surprisingly decent environment with new people and at the same time I feel confident that we will be home together until the end.
Don't think about this too much now. Focus on living and what needs to be done today. Or at least this hour.
 
Presentmonster

Monster? Who have you been talking to? :lol:

i read Robs posts and the rest about their relatives last moments and i dread that time. I wonder where i would take my mum? In those moments? There are no hospices here in Greece. I dint want to think about it. Still hoping for a miracle.

My actual name on the forum is This Present Moment, to remind myself I can't live in the past or the future - I only have right now.

That doesn't mean that I'm not planning for the future - but I'm open to a miracle too! (I have seen one before!)

I don't know if this would be any help for palliative (hospice) care in Greece:

http://www.monadaanakoufisis.gr/
 
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As we have discussed, ALS Worldwide has some warts.

The largest center for ALS in Greece seems to be:

Department of Neurology, National and Kapodistrian University of Athens, Aeghinition Hospital, Athens, Greece

I would contact them and ask about regional expertise closer to you, and if there is none, ask what they could offer if your mom was under their care.
 
The new bed was delivered today, last electric model. Mum didnt like it, she was crying when we put her to take her midday nap. My older sister who is a bit more hard than me told her is better for her breath and she needs to get used to it. My darling presentmoment and lgelb these facilities are 500kms away from us in Athens. Not sure i want to take her so far away from her home. Already she blames me that she got worse when i took her to hospital for a diagnosis the last time.
 
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I hope your mom will adjust to the new bed and come to like it. It will make it easier on you and your sisters backs to get her in and out and to make her comfortable. Maybe that will help her to adjust, that she's doing it for her girls.
 
Nina,

I would make the bed nearly flat to start with. It is an adjustment. Also, if it is too hard for your mom, I would consider a foam overlay.

I realize Athens is far from you; I was suggesting you contact them and ask about resources in your area.

Best,
Laurie
 
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