Yes, I had another bad night, just end up getting up very early in the morning as I can no longer sleep. Today I was up at 6:15 and it makes for a long day.
A stream of consciousness
- Thread starter PalSal
- Start date
AMAZING. I am not sure but I think my funds for assistance just doubled. I made the paperwork requesting more assistance....a social worker just called on the telephone this time, no 2.5 hour observation visit like last time. OH's doctor wrote a letter re OH's current condition. It looks like they have doubled the allowance. I must go over to my daughters and make sure I am reading the response correctly.
This means more walks in the mountains for hubby. and more free time for me. There are conditions on the use of the money. Cannot use firms or companies must hire individuals legally and pay into their tax, retirement and vacation time. It is a good program...
I am living in the right country......this is really quite unbelieveable.
It is so difficult for so many people here on Talking Point. And it took me getting cancer and getting really sick to get the attention I needed to find a way into the helping system (the specific arm of social services). But it seems I am there now. I seem to be really blessed at the moment. I am so very very grateful for the help.
This means more walks in the mountains for hubby. and more free time for me. There are conditions on the use of the money. Cannot use firms or companies must hire individuals legally and pay into their tax, retirement and vacation time. It is a good program...
I am living in the right country......this is really quite unbelieveable.
It is so difficult for so many people here on Talking Point. And it took me getting cancer and getting really sick to get the attention I needed to find a way into the helping system (the specific arm of social services). But it seems I am there now. I seem to be really blessed at the moment. I am so very very grateful for the help.
You really live in the right country!
I'm glad for you . More free time is the fresh air we need .
Have a nice day!
Oh this is lovely news! It is so good for you both. More walks and company for your husband, more time for you...and then your time together will be happier. I am so pleased for you.
Well ladies, I was wrong...it is not double but it is 26.6 hours per month more that what I have now. so that is just over six hours per week so it is another day or two of walking each week as he usually goes for 3.5 hours each time he goes walking with the carer. So all good. But not double, but still wonderful..
I hope you are not too disappointed...it is still more than you were expecting...which is always a bonus!
As usual you have the best attitude to what happens to you and find the way to be grateful
Have a good day @PalSal
My friend Lotti in London.....she is amazing. It is all I can do to be kind to my OH for the entire day let alone get out there and help other people. My world is pretty small. Hope you enjoy reading about Lotti she is mighty mighty!!
http://www.mirror.co.uk/news/real-life-stories/ive-never-forgotten-hunger-wwii-11499460
http://www.mirror.co.uk/news/real-life-stories/ive-never-forgotten-hunger-wwii-11499460
Oh my goodness. What a wonderful lady. ‘Too blessed to be stressed’. I want to really take those words to heart. I am so caught up in my ‘terrible’ situation, that I have forgotten to count my blessings, even though you, PalSal, often remind us to. When I was a little girl at Sunday School we used to sing ‘Count your blessings, name them one by one....’. Thank you so much for sharing this. I have kept the link to the charity she founded, and I will have a good look later.
I kept a big secret from my kids. I have shared on this site that three of siblings have had Huntingtons Disease (sometimes called Huntingtons Chorea) It has been a tragic and sad discovery for my family after much destruction, needless blame and misunderstanding for 20 years ...it is horrible. I went to genetic counseling with my kids and they did not want me to be tested. So, for the last year I have worried and worried about this. I did not believe I had the illness but I was worried that perhaps I had been an unknowing carrier. So, in secret three weeks ago, I did the genetic testing. Happily, my results are conclusive I do not have the disease in any form and was not a carrier. So, my children and their children most probably would not get it...to are at the same risk as most of the world's population. We all had dinner together on Friday night and I told them all. My daughter felt sad as she thought she had let me down for not supporting me thru the testing wait..... but no worries. It is all bittersweet, I am inconsolibly sad for my siblings and their children. In the case of my elder sister, who married young and has four grandchildren at the age of reproduciton.....there are many who are affected or at risk!each must make their own choice about taking the test.
The sun is out, no rain at the moment. It is crisp and cold. I will walk to the villagewith OH and mail forms....spend the afternoon with my daughter and grandbabies and try to enjoy the day.Moments of JOY!!!
Oh my goodness...what a decision you had to make! And a bittersweet result indeed...knowing your siblings are all carriers. My brother just found out recently he has a hereditary bone condition. I said to him, if we thought about all this at the age of 18 we should make decisions not to have children, but we fall in love, get married, have babies, never thinking that we should consider genetics.
Enjoy your day x x
Enjoy your day x x
thanks for your thoughts AM. My siblings have the disease ....not just carriers. It is horrific.
Another day. I will be going into town while a dear friend takes OH out for a walk and lunch. I am so lucky to have so much support.
My contract with the orchester has not been renewed. I was expecting it. But I am struggling that I will really not be working anymore and no business card. They have given me season tickets for life, as a reward and thank you. But I feel I am not needed anymore and that is difficult for me as I have always worked. (not to mentioned income is nice) This was no surprise as I will turn 64 in March. My personal value and self esteem is is strongly connected to my work life and career. Rationally, I know that is not what is important, but I loved being connected and part of this wonderful organization.
My life gets smaller and smaller and I must accept. Humility is not one of my virtues.
I pray to find a new way of looking at things.....with less to do I will have less stress. I can perhaps nurture calm, peace, patience, understanding and serenity-Too blessed to be stressed.
First things first ....I must work harder on my German so that I can become a citizen.
Perhaps this extra time will allow for me develop a new skill.....it is said everyone has one book in them. I find writing very difficult....perhaps I could find a theme.....
Take care all........
Hello! I am sorry I missed you this morning. I am very tired after the long day yesterday, and this stupid illness I have had. I was up late, and then we just went shopping...and are now resting before lunch. It was Martin’s brither’s funeral yesterday, it was a long day. What disappointing news about the orchestra. So much of our identity is bound up in what we do, rather than who we are.
As far as your German goes, have you tried the Duolingo app? It may be too basic for you, I don’t know what your standard of .german is. I used to study Italian for an hour most days, and I reached a standard that satisfied me....but I am easily pleased!
And as for your writing...yours was one of the first threads that I read on this forum, and I always look forward to reading what you write. So, the skill to convey your thoughts in the written word is there...as you say, it is finding a theme. Would autobiography interest you? I was thinking of your friend, who has taught us that we are ‘too blessed to be stressed’. Or maybe something music based?
I am sorry, I am too tired today to write much, I am so sleepy.
As far as your German goes, have you tried the Duolingo app? It may be too basic for you, I don’t know what your standard of .german is. I used to study Italian for an hour most days, and I reached a standard that satisfied me....but I am easily pleased!
And as for your writing...yours was one of the first threads that I read on this forum, and I always look forward to reading what you write. So, the skill to convey your thoughts in the written word is there...as you say, it is finding a theme. Would autobiography interest you? I was thinking of your friend, who has taught us that we are ‘too blessed to be stressed’. Or maybe something music based?
I am sorry, I am too tired today to write much, I am so sleepy.
Hope OK to butt in, I do read your thread.
My daughter sings the praises of duolingo, she is currently using it to learn Spanish from scratch but she does use it for German, where she is around UK A level standard. She speaks French quite well (above UK A level standard) so I'll ask her how it works for her at this level.
I think it is mainly vocab, rather than grammar, for French she has listened to french radio (her brexit protest she listened for a week to the serious French debates about the Brexit vote - she is 16 now).
The degree courses we have been looking at (to start in Oct 19) include options for a year overseas, and she was liking the look of Switzerland as an option but I thought areas of Switzerland vary as to which language they use? some is German, some if French and some Italian? Or is it mainly German?
My daughter sings the praises of duolingo, she is currently using it to learn Spanish from scratch but she does use it for German, where she is around UK A level standard. She speaks French quite well (above UK A level standard) so I'll ask her how it works for her at this level.
I think it is mainly vocab, rather than grammar, for French she has listened to french radio (her brexit protest she listened for a week to the serious French debates about the Brexit vote - she is 16 now).
The degree courses we have been looking at (to start in Oct 19) include options for a year overseas, and she was liking the look of Switzerland as an option but I thought areas of Switzerland vary as to which language they use? some is German, some if French and some Italian? Or is it mainly German?
I quite literally welled up reading your post and can relate to almost all of it, the nice shiny parts and not so nice darkness that shrouds our lives sometimes. It may sound weird to people who have no concept of what we caregivers go through, but reading of others problems, outlooks and solutions is such a help to coping in such a lonely role, thank you.
Hi @PalSal,
Hope the book which is in you can come out .
Why don't you start writing a tale for your grand-children ?
Or a short story.
You have so much to say, finding a theme can't be difficult. More likely, the theme will find you..I mean, one day you will realize that there is something that demands to be written by you
Thanks TP Friends for comments and support. I will look into duolingo. AM; Sorry you were exhausted after the funeral not surprising.
We had a very full weekend. Saturday night we celebrated American Thanksgiving with over 20 good friends and some of our children (my 2 here in Switzerland and my two little granddaughters). On Friday, I steamed and pureed the pumpkin for pies. (half days work) On Saturday from 8:30 to 14:00 I baked two pumpkin and two pecan pies and a cinnamon coffee cake.
On Saturday evening I went to a remembrance service for a friend originally from New York who died suddenly at 69. I am feeling so old as my address book is full of people who have passed away. Gone in an instant. It got very stressful as I had to get OH together to go, direct him to wash properly....send him back to the showers because he did not wash properly. Dress him (he still looks very good when clean up for a celebration....as he is a handsome man) Then I had to get dressed myself , get all the baked goods into the car which I borrowed for this busy day, deliver the baked goods, get my hubby to my daughter so she could get him to the Thanksgiving celebrations....park the car, catch the tram into the city for the funeral. I made it within 5 minutes of the start.....but it was exhausting.
I have a lot to greive. No longer any communication with three of my siblings as their Huntingtons progresses--- it makes me so sad when I think of our childhood together and early adulthood. They have passed beyond my ability to interact with them. My OH has no contacts without me to create, enable and initiate them....his mother, his siblings, our children and friends. While my OH lingers in the state of semi life....unable to do the many things which gave him pleasure and usefulness and made him the unique person he was. As I write here all the time, thank God he still gets pleasure from nature and walking, so I get a glimpse of that man he was and the pleasures he has always taken from nature.
So, much of his life is anxiety and searching for something which he cannot find and usually does not know what he is looking for....but he cannot find it. His 'things' which he hoards away in his nightstand, bit of string....the protected coffee pellets , rubber bands, nails and skrews, lids of missing jars, odd shoelaces, lots of eyeglass cases-- all these items messily stashed ....the apotheosis of his cluttered and confused mind.
After the funeral, I went on to the Thanksgiving celebrations, which were lovely. I had a very good time. A few hours of joy and others engaging and looking after my OH.Serving him, waiting on him.
On Sunday, our little granddaughter was baptised. I allowed a great deal of time for dressing and travel. So we arrived early. Before the service, my husband and I had a coffee and crescent across from the church. He went to the bathroom, on his own as it was a small place and easy to identify. When he came out of the bathroom, he would not see me. He was looking around and the place although small was full of people. This seems to be a big problem now, he cannot distinguish me from others in a room. I have written here about it before. It is so strange....but I am sure that it happens to others here on TP. It is another level of loss in the process.
The baptism service and party with my son in law's large and loving family was delightful and so moving. Wonderful to observe how his family are with each other and how important they are too each other. Very demonstrative. There was a small English contingency, my girlfriend, her hubby (he is a great friend on my OH and they walk and lunch together on Fridays (English), their son, my youngest son, and another American friend of my daughter. But we were dominated, of course, by my son in laws family which is vast. But it was a lovely time. The baby was perfect, beautiful & innocent and all the other little people were wonderful . The community of the church was very pleased and happy to be part of the celebrations and see this wonderful big family add another generation.
I hope to find the energy to tackle some more paperwork today...and the patience to endure automated telephone answering services!! Have a good day TP friends.
On Saturday evening I went to a remembrance service for a friend originally from New York who died suddenly at 69. I am feeling so old as my address book is full of people who have passed away. Gone in an instant. It got very stressful as I had to get OH together to go, direct him to wash properly....send him back to the showers because he did not wash properly. Dress him (he still looks very good when clean up for a celebration....as he is a handsome man) Then I had to get dressed myself , get all the baked goods into the car which I borrowed for this busy day, deliver the baked goods, get my hubby to my daughter so she could get him to the Thanksgiving celebrations....park the car, catch the tram into the city for the funeral. I made it within 5 minutes of the start.....but it was exhausting.
I have a lot to greive. No longer any communication with three of my siblings as their Huntingtons progresses--- it makes me so sad when I think of our childhood together and early adulthood. They have passed beyond my ability to interact with them. My OH has no contacts without me to create, enable and initiate them....his mother, his siblings, our children and friends. While my OH lingers in the state of semi life....unable to do the many things which gave him pleasure and usefulness and made him the unique person he was. As I write here all the time, thank God he still gets pleasure from nature and walking, so I get a glimpse of that man he was and the pleasures he has always taken from nature.
So, much of his life is anxiety and searching for something which he cannot find and usually does not know what he is looking for....but he cannot find it. His 'things' which he hoards away in his nightstand, bit of string....the protected coffee pellets , rubber bands, nails and skrews, lids of missing jars, odd shoelaces, lots of eyeglass cases-- all these items messily stashed ....the apotheosis of his cluttered and confused mind.
After the funeral, I went on to the Thanksgiving celebrations, which were lovely. I had a very good time. A few hours of joy and others engaging and looking after my OH.Serving him, waiting on him.
On Sunday, our little granddaughter was baptised. I allowed a great deal of time for dressing and travel. So we arrived early. Before the service, my husband and I had a coffee and crescent across from the church. He went to the bathroom, on his own as it was a small place and easy to identify. When he came out of the bathroom, he would not see me. He was looking around and the place although small was full of people. This seems to be a big problem now, he cannot distinguish me from others in a room. I have written here about it before. It is so strange....but I am sure that it happens to others here on TP. It is another level of loss in the process.
The baptism service and party with my son in law's large and loving family was delightful and so moving. Wonderful to observe how his family are with each other and how important they are too each other. Very demonstrative. There was a small English contingency, my girlfriend, her hubby (he is a great friend on my OH and they walk and lunch together on Fridays (English), their son, my youngest son, and another American friend of my daughter. But we were dominated, of course, by my son in laws family which is vast. But it was a lovely time. The baby was perfect, beautiful & innocent and all the other little people were wonderful . The community of the church was very pleased and happy to be part of the celebrations and see this wonderful big family add another generation.
I hope to find the energy to tackle some more paperwork today...and the patience to endure automated telephone answering services!! Have a good day TP friends.
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