Some input for someone who just got into this

JohnGroban

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Oct 28, 2020
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Grandma had a terrible fit last night, similar to the one it happened last year when it all started. They calmed her down and now she is sleeping. We are waiting for her to wake up to see how she is.

My question is, in dementia, is it possible that bad weather or changing the hour (we are going into the winter hour in two weeks) can affect someone? We had non stop rain for 4 days in row. It feels very similar to when it started, like a pattern.
It looks like last night it was sundowning again, something she didn't have for close to 9 months. Sure, might be that it is progressing, but I am curious because it feels very similar.

Thanks.
 
Last edited:

Jaded'n'faded

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Jan 23, 2019
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High Peak
I'm not sure it's very scientific but a lot of people have said their PWD doesn't do so well with the darker nights, bad weather and even the hour changing. (Though many have lost their sense of night and day so I find that hard to comprehend.)

I'm no better! I struggle at this time of year - what my mother used to call 'the back end of the year'. Historically, most of the major changes in my life have happened October/November. Probably coincidence but I'm definitely unsettled right now. Fortunately for me it's just Oct/Nov and not the whole winter - some people suffer from Seasonal Affective Disorder (SAD) and use special lamps they say make them feel better...

With your grandma though, it's likely to be progression of her dementia. The fact she's had another seizure might indicate things are moving on.
 

JohnGroban

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Oct 28, 2020
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Thank you @Jaded'n'faded

She is better now. She said she had a "trauma" last night. Interesting you mentioned about changes, she is born in November, but no idea if it's connected in any way.
Hope tonight will be better.
 

lemonbalm

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May 21, 2018
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I do think the light and weather affects mood @JohnGroban although I am not sure it would cause such a drastic and sudden change in your grandma. I hope she has settled. There can be so many reasons for agitation (and, of course, it is always worth checking for the dreaded urine infection if a sudden change in behaviour occurs)
 

JohnGroban

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Oct 28, 2020
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I do think the light and weather affects mood @JohnGroban although I am not sure it would cause such a drastic and sudden change in your grandma. I hope she has settled. There can be so many reasons for agitation (and, of course, it is always worth checking for the dreaded urine infection if a sudden change in behaviour occurs)

Yesterday she was ok all day long, has no memory of what happened.
Today we had a mini heart attack. At 9 mums phone is ringing from the center, we were certain something had happened, but instead it was the head nurse with grandma, grandma wanted to talk to mum.
She said to mum to bring her a pie on tuesday and said she wasn't feeling that good the past few days, but she is ok now.

Moments like this make you accept that as hard as it is, she is faaaar better in a decent home care like this is than at home.
 

JohnGroban

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Oct 28, 2020
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Hi all, was a bit caught up lately and did not update this:

Grandma:
- Incredible, but on the 26th we had the 1-year” anniversary” of this. Grandma is ok, back to her usual self since that incident in early Oct. She still wants to go home, the usual things, but is quite settled and content. Next week it will be her 96 birthday so I will bring something there: cake, some pastry, juices, etc, to celebrate her. Nothing much, just a few things. She is physically well, very active, walks alone, spends time with people. I expect some bad days, but she is fine which gives me a little happiness.

Dad:
- Hard to say how this is going. It is quite a constant nightmare as when we think he is going to be fine, something happens. The last updates are that he has, in fact, 41 kg (best case scenario). He never had 54, had an argument with them about this and they said they calculated with the bed also, but every time I asked they said they did. Got upset, but tried to move past this.
His feeding is just PEG, nothing else. We bring him shakes, smoothies and soup-cremes three times per week.
He was breathing alone most of the time, they took him for a walk in the wheelchair almost daily in the last two weeks. He was ventilated only once because of low saturation.
Last night they ventilated him again and it looks like they have a pattern: he can stay like this for about 3-4 days, but then he needs ventilation.
The outcome is that they've told us they have a discussion with another hospital to take him there where there are multiple pneumology experts.

My gut is telling me they think they did all that they can and need that place free for someone else.
I had a chat with the doctor that helped us all the way, the one with connections, and he told me:
"Fella, your dad is like a ship lost on sea. He doesn't want to go down, but doesn't want to come to shore".

My hope is close to zero, seeing your dad with 41 kg is hard to take, really hard to swallow.
I just want this to be over. I am tired of having hopes.
 

lemonbalm

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May 21, 2018
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Hi John

I’m sorry to hear that your Dad is still not doing so well. Perhaps he will fare better at the other hospital. I do hope so.

Good to see at least that your grandma seems quite settled.

Keeping fingers crossed for your Dad.
 

JohnGroban

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Oct 28, 2020
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Hi John

I’m sorry to hear that your Dad is still not doing so well. Perhaps he will fare better at the other hospital. I do hope so.

Good to see at least that your grandma seems quite settled.

Keeping fingers crossed for your Dad.
I am at a crossroads sadly.
That new hospital is the one where my boss's mum was and it was terrible. Just terrible. Different section, but terrible.
But on the other side, the doctor with the connections recommends it, so I reckon he will get the attention needed.

I am inclined to accept, don't know what else we can do in this situation, to be honest.

Went and did some math in my search to take him to the private sector. 30K euros, for 150 days, without treatment and medicine, but we have no connections there, no one and usually the doctors are not as a good.
 

canary

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Feb 25, 2014
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South coast
Thats a tough choice.
Will you be able to visit regularly to check on things, so that you would be able to pick up on problems?
 

JohnGroban

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Oct 28, 2020
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Thats a tough choice.
Will you be able to visit regularly to check on things, so that you would be able to pick up on problems?

Don't know, it is closer. Two tram stops from mum, however, because of Covid restrictions, I have no idea how our communication offline and online will be.
My boss's mum went there and they sent her home missing important things, but she had no one there, no "connection", while in my case the ICU here and the doctor would speak directly there with those doctors and transfer him, also they think there are experts there that can help him. I trust the doctor because he is one of the best in the country, I don't trust the place.
 

lemonbalm

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May 21, 2018
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How does your mum feel about it? Will it be up to you to decide or do the doctors have the final say? It does sound sensible to have your Dad in a hospital with specialists in that field but I can understand your dilemma when you have such a bad impression of the hospital.
 

JohnGroban

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Oct 28, 2020
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@lemonbalm

Sadly, mum is overwhelmed by the situation. We have different coping styles, but it is normal I think. I cannot even imagine what it feels like to be close to losing your partner.
To tell you the truth, I have no idea who will have the final say in this.
Sure, we can buy the ventilating machine, take him home and hire a nurse, but what do we do then if something happens?
At this point, I would risk and take him there.

The good thing is, with all this mess, his morale is still excellent.
 

JohnGroban

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Oct 28, 2020
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So, got ahead of myself with ”his morale is still excellent”.
This weekend he had a fit, he refused to do anything, was very upset, and was ventilated again. He calmed down and is without ventilation but here comes the big problem: they couldn't find a place for him at that hospital, actually, at no other hospital, they are still searching, but on the non-verbal signs, they want to get rid.
I somewhat understand, he's been in ICU for 3 months now, they proposed for us to talk with a place, but after a Google search, I found out that proposal was horrible. Bad reviews, accused of causing people to die, etc.

So, I am in a pickle, of course. I've wrote the hospital a mail with a huge line of questions regarding my dad, questions about his treatment and what is needed for him. Based on their responses, I have two options:
1) There is a private place outside the city. Like a recovery clinic, expensive, 100 pounds per day. We can manage to take him there for about 6 months, but no more (but I need to be 100% convinced this is the best chance). They have great reviews, but can they make him gain weight?
2) Take him where grandma is, but their second location. However, here I need to rent or buy the ventilation machine. It would be cheaper, the staff needs to learn how to use it and other services.

Of course, take him home with mum is another option, but it is out of the question.

With grandma, well, tomorrow it's her b-day. 96.
I am going later tonight to drop of juices, candy and the cake and we will join her tomorrow.
I hope she will be happy.
 

lemonbalm

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May 21, 2018
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Hi John

That’s a difficult choice to make on your own. What does the doctor, the one you trust, think is the best option? I would think the recovery clinic you mention may be the safest bet from what you have said. Are you able to talk to the people there about it?

I hope your grandma has a happy day tomorrow. At least you know she is in the right place.

Everything still firmly crossed for your Dad.
 

JohnGroban

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Oct 28, 2020
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Hi John

That’s a difficult choice to make on your own. What does the doctor, the one you trust, think is the best option? I would think the recovery clinic you mention may be the safest bet from what you have said. Are you able to talk to the people there about it?

I hope your grandma has a happy day tomorrow. At least you know she is in the right place.

Everything still firmly crossed for your Dad.
Well, the doctor said he will ask around, but couldn't give me his opinion about the place I've found because he doesn't know it.
To be honest, he sounded very dismissive, but can't blame him, again. He is old school, I think you all know the type, not friendly at all, but good as his job.

I talked with the place and they can take care of him, yes, but I need responses from the ICU to have 100% everything that is needed for that. From a cannula to his tracheostomy to help him talk to the required ventilatory regime. I don't want to miss a thing because is his life at stake.

Thank you for grandma and loving thoughts for dad.
 

JohnGroban

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Oct 28, 2020
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Hi all,

Got a few updates on this.

Grandma:
She is fine, we had a lovely celebration for her birthday there. Cake. juices, singing. It was a bit funny, to be honest because her main concern was that everyone had a plate with cake. Looked like the good old days with her.
We hugged, kissed, overall it was lovely. I really missed this.
She wants to go home, of course, but in general, she is settled since moving back with her old roommate. They have a really odd relationship. Grandma dislikes her, but cares a lot.
Had yesterday a long chat with the nurse that like her a lot and she told me grandma got upset on her because she did not take two bags of candy grandma (asked me to buy) and prepared for her kid. We laughed a bit.

Dad:
Phew, well, today he was moved. The ICU had a connection in a hospital specialized in pulmonology. Searched his doctor online and he really looks like a real deal. Talked yesterday a bit and said their strategy is to find why he can't breath alone, what is stopping him, and tackle dad.
But there are two bad parts here: The hospital is a covid related. Dad is in the green ICU section, but still.
The second is that dad reached 38 kg, so no idea how long he can fight back.

The good news is that in ICU he has a TV, he will watch something for the first time in 3 months. Another good option is that I have a plan (if he makes it). If they get to settle him, I found a recovery clinic, outside the city. Is expensive, we will have to go into our savings. That clinic is willing to take him under some conditions, they were super fair and ruthless in our discussion and he will need an intensive recovery. Sports, training, etc carefully watched by doctors.
After that, if needed, he will be moved to the second location owned by the care home where grandma is, for another recovery. They are more than willing to help us, with a better price of course, based on the relationship we built the past year.

This scenario is still faaaar away.
I found somewhat peace, the pain is still there, but I am trying to cover it. I accepted the idea there are big chances he will not make it, but I will do everything I can to fight for him and somewhat, in a strange way, it helps.

Hugs for everyone.
 

Shedrech

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Dec 15, 2012
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hi @JohnGroban
good to read you had such a good day with your Grandma

I hope this move does benefit your dad so he can then go to the second location. At least he does now have access to some entertainment and distraction.

You are doing so well by both of them ... take care of yourself too
 

JohnGroban

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Oct 28, 2020
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hi @JohnGroban
good to read you had such a good day with your Grandma

I hope this move does benefit your dad so he can then go to the second location. At least he does now have access to some entertainment and distraction.

You are doing so well by both of them ... take care of yourself too
Thank you.

I just can't believe it grandma is 96. Nazi, legionnaires, communism, she saw them all and she is still standing, still having the upper hand in her fight with dementia.
Just incredible.
 

lemonbalm

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May 21, 2018
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Hi John

Good to read your update. That all sounds encouraging. You should be proud of yourself for taking such great care of your family. You have put such a lot into it and I hope that all goes well for your Dad. Grandma sounds to be doing just fine.

?
 

JohnGroban

Registered User
Oct 28, 2020
248
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Hi John

Good to read your update. That all sounds encouraging. You should be proud of yourself for taking such great care of your family. You have put such a lot into it and I hope that all goes well for your Dad. Grandma sounds to be doing just fine.

?

Thanks lemonbalm and If I get caught up with things and don't post in the next weeks or so, have a lovely holiday season. You and your loved one and thank you for your amazing inputs throughout the year. They helped soo much.