• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Another day.......

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
I will have another break tomorrow night. I am invited to attend the Lucerne Festival and will hear Martha Argerich play Beethoven. We will be required to wear masks , but I am really looking forward to it. Music is an important part of what I consider quality of life, and live music is an experience which moves me in a deep way.
I think I will give up my classical choir as it is just to risky for me to sing with a big group of people. I will not give up singing completely, perhaps I will take some private lessons and I will continue to make music in small groups (and play my guitar). But a ensemble of 20 voices is probably not on at the moment with the Covid.
As the "Selfish Pig" in this relationship, I have managed too live with Nick at home because I have been fortunate enough to manage, employ and organize outside help.
@vannesser I am so sorry your situation is so difficult. I hope that "this too shall pass." for you and your daughter, and of course your ho. 8 cares a day 4 times a day---not sure exactly what this means.....he must be turned and changed. How perfectly horrible for all of you. It is always amazing to me how the human body keeps functioning so long, surviving. Nick made decisions long ago about intervention and long term medical intervention. He will have none. But he has an excellent constitution and a very fit body, so his body may outlive mine.
So, for me in the meantime, I must have pleasure and live in world and find some joy as often as I can arrange for Nick's care and well-being. So, I will drag out something lovely to wear and set my hair and put on my makeup and go out for a lovely experience.
We have no clear idea when Nicky will enter the care home , he has now been on the waiting list since July 22. His children have been told and his family in the UK everyone is expressing their support of my decision. In the meantime, it is one day at a time, and trying to help him live his life as best I can, and still enjoy my own life.
 

None the Wiser

Registered User
Feb 3, 2020
121
Hello @PalSal, it’s so lovely to hear that you are making the most of life even though it’s somewhat different to what you would want. I envy you being able to go to concerts. What a privilege to hear Martha Argerich play Beethoven in Lucerne. Enjoy!
I was reading somewhere that having a child with ‘special needs’ is like preparing for a holiday in ‘Italy’ for instance, learning the language, getting on the plane and discovering you’ve ended up in Holland. The terrain is completely different to what was expected, you have to learn a different language and have to adjust your expectations. In addition people still come over from ‘Italy’ and tell you how wonderful it is there! I think this is rather a good way of thinking about living with someone with dementia. I prepared for, and dreamed about a retirement that is turning out to be a long way from what I had expected. It seems to me @PalSal that you are making the most of the situation you have found yourself in. Having access to resources, particularly financial,, helps enormously of course, but I am going to hold you as a good role model mind as I travel further along this journey.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
@None the Wiser That is a very interesting analogy.....

I have not taken long trip and holidays, (even before Coivd). As the costs involved are just too expensive, 24 hour Nick for Nick makes a holiday out of the question) I prefer to spend my money on a private service that comes at 7pm nightly to bathe and prepare Nick for bed ....as this is when I am the most tired and out of energy. We have to make choices....for year and a half before Covid the daycare worked, but now this is more what I need.

But in 2017, Nick's siblings helped me , by coming and caring for him, and my son helped too. I went for 3 weeks to see my family in the USA. That was the last time I traveled. But I can enjoy life in other smaller ways. And you are right it costs.....and access to resources. One must also create human resources in the form of reliable and available carers to help. (I have four on contract but find that only two seem to accept any work from me so I rely heavily on those two) I could find no one to help me tonight....so my daughter is coming with her baby and she will look after her dad (Her husband will look after their two other little ones). My ticket is free, as a young woman acquitance from the company sponsoring the Lucerne Festival invited me to be her guest.

On Monday my hiking girlfriend and I will take Nick on a Nick capable hike....then we are going to go to a village which is having a local outside art fair throughout the village. I am really looking forward to that. Its free, Nick can join us and it will be a lovely way to spend the day.

Today I will work in the house and garden and set my hair for this evening. I am leaving for Lucerne at 4 pm. And it is a beautiful bright blue sky day. I am grateful to have a plan for the next couple of days and things to look forward too.Nick is healthy again which makes life much easer, when our loved ones are physically ill it really can make life hard for everyone, as at least with Nick, he cannot communicate what is wrong and how I can help him. But with my own health conditions, I must not overdue activities, as now in my life I get so very tired. So, I just try to do manage my energy too.
 

Starbright

Registered User
Apr 8, 2018
535
Yes I had a 36 hour break thanks to my youngest son and one of the carers. I went overnight to the mountains and took two circular hikes of about 4 hours each. It was wonderful to not feel any responsibility or be wondering where NIck is in the house etc etc etc. Overseeing the the endless trips to the toilet.
I felt so good. But within two or three hours of being home I was back to my old bad ways. Impatient and irritable. It is clearly time to end this caring role when even a break does not fill the vessel enough to sustain the job at hand. I need a week....not a day.
But anyway that is how it is. Mornings are good, afternoons ok, evenings are fairly intolerable.
@PalSal .....Your post rings so true for me also and I could have written it. I’m no help as I have no answers to this vile illness just couldn’t read and run I wish you strength and a virtual ((((((((hug)))))))
A.x
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Projecting into the future this morning.
My daughter spent the night on Saturday here with her youngest, so that she could watch her dad for me while I went to the Lucerne Festival. Monday night she developed a sore throat and cough. She has gone to a testing center this morning to see if she has the virus. Luckily, she does not feel unwell, but being a doctor she knows the importance of testing. We have been trying to be careful.....but I am not consistent with my grandchildren. I rely on their cuddles and kisses to live! I may need to rethink this.

Anyway we must wait 24 hours for the test results. I do not know what this will mean for us and quarantining. I am projecting into the future....that the carers will not come to the house, the walker will not come. 10 days again of me as sole carer. I did it from March to June. I can do it again.

I am thinking about all the possibilites if her test is positive. What it means for her and her little young family? What does it mean for Nick and I? What if I get sick? What if Nick gets sick? What good does that do? I will just have to deal with it as it comes. In the meantime. Trying not to worry about something that may not be an issue.
 

None the Wiser

Registered User
Feb 3, 2020
121
Why is it that our brains won’t keep still! I, like you @PalSal can’t stop projecting the ‘what if’s’. Life would be so much easier if we could just sit with things and not try to solve everything before we have to!
I understand your anxiety! Hope all is well.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
NEGATIVE on the COVID test...for now.
I do not think I project all the time. I do project and I try to acknowledge what I am doing, accept the situation and move on. Writing here helps me to do that.
I try not to stay in the fears.
Nick is in a constant state of fear. And as I have said before he cannot seem to see me physically at times. Not to mention know who I am. From morning to bed. And the "I want to go home now....or how am I going to get home now" . It is so sad but it is also so exhausting as it all falls to me to comfort these fears.
I am off to the hospital for my three month leukemia blood work and check up. I feel very healthy, although very tired at the month. But I think the new medication is working well. I have been in steady remission now since 2018. One day at a time.
But I am ready for the care home to get a space for him. I am ready to only be responsible for myself, with out managing endless carers to come in and out of the house and scheduling all my time. I am ready for spontaneity and freedom (whatever that can mean in today's world) But I must accept that I will have to wait.
I ordered name tags from the UK and will begin the process of labeling all his clothes and personal stuff. He will have a private room and I can move in some furniture and some of his own things. Just waiting now.
 

Woo2

Registered User
Apr 30, 2019
2,805
South East
Glad your daughters test was negative . I hope too that the wait isn’t a long one. Hope your hospital visit goes ok too 🤞
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Hello TP friends,
My daughters test was negative, and we knew the answer at 7:45 am the next morning. It was a relief. I went to the hospital on Friday for my three month leukemia blood work and various tests they do, as the meds can cause heart issues so they always have to do EKG stress tests. But I got to see my lovely Dr. who has cared for me for the last 5 years while we manage my leukemia. By Monday, my Dr. had all the results and I am looking very healthy at the moment. Even my cholesterol which gets high because of the medication is low and normal. So, the slowing down of life has been good for my health. Fitness with all the hiking and perhaps eating a little better U( it doesn't seem like I am eating differently but perhaps I am)

Nick has been pretty easy .....I hate to write this as then things will change. He too is physically healthy at the moment, and content as there has been nothing to rock his boat. We have now been on the waiting list for the care home for a month. Who knows how long it will take and in the end I must just keep doing the carer role, one day at a time.

I get so resentful that the insurance company which charges me an arm and a leg for all these years does not pick up more care for Nick while he is at home. We have paid high premiums for many years with few claims for Nick's condition. Once he goes into a home care environment, the insurance company will be forced to pick up the nursing portion 24/7 but not when he is at home with me. I would think that it would save them money to provide more ways for the patient to be cared for at home. But it is not the way it works, very short sited of the insurers.

But the support services I have implemented this year do help. ie lunch provided by a meals on wheels service for 18 CHF a day, and the evening private Spitex service who come for one hour and bath him and get him in his pjs have helped me a lot. But I am still very short tempered by the evening. I just want the day to be over at 8 pm. We took a hike from 3 to 5 pm yesterday which is most unusual for us but the weather is so much cooler this week it is possible. I miss the day care but it is not possible with my immune issues.

There are so many things I tell myself , like I cannot hike in the afternoon, that it must always be in the mornings. Yesterday proves that is not true. I get into a rut with the routines and then find it very difficult to change anything. But yesterday worked out fine.

Oh, the name tags arrived from the UK in a week. So I can not spend my evening sewing in name tags in preparation for the move to the home. It is a small project and I have time to achieve it. No rush , just making decision on what to label and what he will take with him. So, strange.

Well it is time for us to get dressed and for Nick to have his breakfast. Another day..........
 

canary

Registered User
Feb 25, 2014
13,691
South coast
Some very positive things there - your daughters test result, your blood work, that he is keeping well (I know just what you mean about not wanting to jinx it!) and content.

Its still b***** hard work, though, isnt it? And I expect that you are feeling restless and in limbo, waiting for the placement. Here's to another day of survival!
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Another day.....
Got up and baked a cake, in preparation for a visit from three friends tomorrow. We will sit outside under my pergola, probably in masks and social distance.

I needed to prepare the cake today because I am going out tonight to the opening of the renovated Symphony Hall in Basel (Stadtcasino) for the opening performance of the Sinfonieorchester Basel. I am thrilled and excited.

We will have to wear masks, of course, and the seating is separated.

Can we have glamour in a mask??? Not sure, but I will do my very best. I went to the KKL for the Lucerne Festival two weeks ago and it was a wonderful concert. I am sure tonight will be just as wonderful.....sadly no socializing and no party( which was planned.) But I am happy to go anyway. Hear outstanding music and be grateful to live in such culturally rich community, glad to be in Europe.

Not sure what I will wear, but it is great to have a reason to get dressed and put on my makeup.
ALSO, SO THANKFUL THAT MY SON WILL COME AND TAKE CARE OF HIS FATHER SO THAT I CAN GO TO THIS EVENT: THE CITY, THE ORCHESTRA AND THE AUDIENCE HAVE WAITED 4 YEARS FOR THIS TRANSFORMED AND RESTORED VENUE: SO EXCITING.

It is a beautiful cool day and I will take Nick on his hike after lunch. Not the usual two hours but one hour.


Cheers, Pal Sal
 

Whisperer

Registered User
Mar 27, 2017
221
Dear @PalSal

Please forgive my liberty but reading through this thread I saw you had recently attended Martha Argerich playing Beethoven. I could not agree more with your comment about the joy of attending a live music event, particularly with such a gifted artist. Please can I ask what did she play? The opening bars of the third movement in the Emperor Concerto get me every time knowing what is to come. Funny in caring we dread what may yet be to come but in music we can listen in anticipation of the delight that will unfold. If ever I am down on goes Brahms piano concerto number two with the head phones and I get a lift.

Sorry to intrude on perhaps a minor point but in the small things there is usually joy to be found.
 

jennifer1967

Registered User
Mar 15, 2020
968
Southampton
i have realised that i have never been to a music concert in my life. pop classical or otherwise. the way that it is talked about on the site has made me wonder if ive missed out. ive seen ballets and musicals but no concerts and we have a lovely theatre in southampton, the mayflower and tend to get the westend shows coming on tour. excuse my ignorance but is there a good starting point my son is a music teacher and plays clarinet but never really heard much as he had his head phones on. never was a typical teenager.
 

Banjomansmate

Registered User
Jan 13, 2019
2,215
Dorset
The Bournemouth Symphony Orchestra usually play concerts in Southampton but it looks as though they are starting off with just concerts in Poole this autumn due to Covid-19 restrictions.
Maybe you could listen to Classic FM to find pieces you enjoy then watch out for concerts with that in them. BSO are doing live streaming of their concerts.
 

Thethirdmrsc

Registered User
Apr 4, 2018
225
We have the most amazing theatre in Pitlochry, and I have seen some great musicals, plays and wonderful talks by authors. I took my OH last December to see Colin McCreadie in Scrooge, a 20th century musical adaptation, it was brilliant and my OH behaved himself, win win!
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,059
69
Dundee
We have the most amazing theatre in Pitlochry, and I have seen some great musicals, plays and wonderful talks by authors. I took my OH last December to see Colin McCreadie in Scrooge, a 20th century musical adaptation, it was brilliant and my OH behaved himself, win win!
Pitlochry is one of my favourite theatres! I’ve been going there since the days I was at school and the theatre was a theatre in a tent! Every year Bill and I took my mum to Pitlochry for a week during summer and saw three plays. I think we’ve stayed in every hotel in Pitlochry! For the last 5 or so years of my mum’s we used to take self catering accommodation as hotels were becoming difficult. I got to know that wee hospital down towards the theatre very well!! I had mum there for falls and UTIs!!!

The week my mum died we were supposed to be taking her to Pitlochry for the annual excursion. The theatre was very good and allowed me to have credits to use through the rest of the season. I still remember one of these visits. Bill (whose dementia was fairly advanced by then) said in a loud voice before the play began ‘every body here’s really old’! That from himself who was 81 by then!! When I was getting him out he looked round and asked where my mum was and was she ok. 💜

The last twice I took Bill we went to the same house we always went to but I took a carer with me. One year we went to see Miracle in 34th St and one year was White Christmas. The last time ended rather suddenly when Bill developed a really bad urine infection and he and the carer returned to Dundee in an ambulance while I drove behind!

Sorry - that was quite a diversion but the mention of Pitlochry Festival theatre sparked so many memories!!
 

Forum statistics

Threads
116,561
Messages
1,704,484
Members
67,335
Latest member
Shar1961