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Amazed

PalSal

Registered User
Dec 4, 2011
804
Pratteln Switzerland
Dear Talking Point Friends.
Nick and I have been in isolation for 22 days now. (Due to my CML we will have the minimum 12 weeks of isolation) But we are incredibly well and adjusting. No walkers, no daycare.
I have tried so hard to lead a full and rich life. I continued to work in the early years, brought up the children, and tried to have a "life" of my own; singing in my choir, singing in my rock band, going out on my own, keeping up my appearance, keeping up Nick's appearance.

Regarding life today, the Corona situation has freed me from trying to live a full and normal life, it has freed me to just give up and relax. I feel like all the things I have done to keep engaged and part of life have made me stressed, crabby and impatience. Now no one is having a “life” so it does not matter that I am not having a life. Before I was comparing my life to the lives of others, my friends and acquaintances they were traveling and going out. I was jealous of the spontaneity in their lives. I felt I must at least be very involved and active in my life here in Basel, go to choir, make music with friends, have people to dinner, go to the exhibitions to be alive.
I am not sure I was really enjoying anything. I was just pushing to sustain my previous life, just trying to have a normal life….or that I needed to say I was living a full life. My ego.
Now, I have been given permission by the universe to just hang…no pressure to get anywhere or do anything. No organizing Nick. Just caring for him and myself. I realize now how stressful it was to try and remain “normal” in our situation which was not normal really.

It is early days, but I hope and pray I can continue to sustain this mental attitude for the duration of the crisis. Nick is no better, he continues to progress. He generally unaware of the crisis (and life in general) and is content as long as I am content, and that all his needs are met. I have not been grateful to have his company for many years. But in isolation, I am grateful that he is here with me still. We are also very grateful to be out in the country....walks for hours at a time are easy here. Without seeing other people . And walking is all NIck has ever wanted to do.....so we continue to do that as we have for many many years.
Take care and stay healthy all.
 

Diane33

New member
Mar 26, 2020
3
I can fully understand what you are saying and I too feel a sense off peace .i am no longer juggling my life trying to please everyone. I care for my mum and a young man you lives with us . My mum doesn’t understand the current situation but I am spending quality time with her ensuring she is cared for the best I can. 👍🏻
 

jenniferjean

Registered User
Apr 2, 2016
704
Basingstoke, Hampshire
Well as you say it's early days yet, but I too see things a little different. I looked forward to my 3 hours a week break when a carer came and sat with my husband allowing me to go out on my own. This is only the second week that I've not had that pleasure but it does seem less important now. I do miss conversation but if I try I can find that simply by giving a friend a quick telephone call. I think this isolating is probably easier for us carers than others as we are used to adapting our lifestyles.
 

reedysue

Registered User
Nov 4, 2014
4,760
Scotland
I am also more relaxed, I am not thinking about the holidays that OH can't have or that I may have to move mum to residential care soon as none of it s going to happen so I don't have to worry or feel guilty.
 

PalSal

Registered User
Dec 4, 2011
804
Pratteln Switzerland
Well as you say it's early days yet, but I too see things a little different. I looked forward to my 3 hours a week break when a carer came and sat with my husband allowing me to go out on my own. This is only the second week that I've not had that pleasure but it does seem less important now. I do miss conversation but if I try I can find that simply by giving a friend a quick telephone call. I think this isolating is probably easier for us carers than others as we are used to adapting our lifestyles.
Thanks Jennifer, Yes, I have been adapting my life for so many years around Alzheimers and CML. Now there is no normalcy. So I can just go with this flow. LOng may it last. xoxox
 

PalSal

Registered User
Dec 4, 2011
804
Pratteln Switzerland
I am also more relaxed, I am not thinking about the holidays that OH can't have or that I may have to move mum to residential care soon as none of it s going to happen so I don't have to worry or feel guilty.
Yes, reedysue. In Jan I had completely given up and started visiting carehomes. Now he would definately not be taken by one so it is off the option. And it seems to be ok. I am ok. He is ok. I am amazed. Thanks for sharing with me.
 

PalSal

Registered User
Dec 4, 2011
804
Pratteln Switzerland
I can fully understand what you are saying and I too feel a sense off peace .i am no longer juggling my life trying to please everyone. I care for my mum and a young man you lives with us . My mum doesn’t understand the current situation but I am spending quality time with her ensuring she is cared for the best I can. 👍🏻
I am not sure I am spending quality time with Nick....I guess walks with him are quality time for us both. The rest of the time he just sits and watches me . No conversation, no connection really. But he is here. Not sure whether or not it is quality....but its better than stress.
 

Lawson58

Registered User
Aug 1, 2014
2,077
Victoria, Australia
Dear Talking Point Friends.
Nick and I have been in isolation for 22 days now. (Due to my CML we will have the minimum 12 weeks of isolation) But we are incredibly well and adjusting. No walkers, no daycare.
I have tried so hard to lead a full and rich life. I continued to work in the early years, brought up the children, and tried to have a "life" of my own; singing in my choir, singing in my rock band, going out on my own, keeping up my appearance, keeping up Nick's appearance.

Regarding life today, the Corona situation has freed me from trying to live a full and normal life, it has freed me to just give up and relax. I feel like all the things I have done to keep engaged and part of life have made me stressed, crabby and impatience. Now no one is having a “life” so it does not matter that I am not having a life. Before I was comparing my life to the lives of others, my friends and acquaintances they were traveling and going out. I was jealous of the spontaneity in their lives. I felt I must at least be very involved and active in my life here in Basel, go to choir, make music with friends, have people to dinner, go to the exhibitions to be alive.
I am not sure I was really enjoying anything. I was just pushing to sustain my previous life, just trying to have a normal life….or that I needed to say I was living a full life. My ego.
Now, I have been given permission by the universe to just hang…no pressure to get anywhere or do anything. No organizing Nick. Just caring for him and myself. I realize now how stressful it was to try and remain “normal” in our situation which was not normal really.

It is early days, but I hope and pray I can continue to sustain this mental attitude for the duration of the crisis. Nick is no better, he continues to progress. He generally unaware of the crisis (and life in general) and is content as long as I am content, and that all his needs are met. I have not been grateful to have his company for many years. But in isolation, I am grateful that he is here with me still. We are also very grateful to be out in the country....walks for hours at a time are easy here. Without seeing other people . And walking is all NIck has ever wanted to do.....so we continue to do that as we have for many many years.
Take care and stay healthy all.
I am not surprised that you are enjoying your time out. You have been doing this for so many years and I am sure you are taking this enforced break to have the chance to recharge your batteries and in a way you are recuperating from years of having to be responsible for another's welfare.

Obviously when you started on your experience with Nick's illness, you were much younger and perhaps needed to maintain your outside life to help keep yourself together, your way of dealing with what lay ahead of you which at the time was a great unknown.

Now that you are older, your needs have changed and with Nick being in his routine and happy to be with you, you can let the world go by for a while. Now again we have no idea of what lies ahead of us or for how long this situation will last, nor do know what the world will be like when this has passed. We might all need our courage when is all done.

Read a good book, enjoy a glass of a wine and indulge in your peace, God knows, you've earned it.
 

RosettaT

Registered User
Sep 9, 2018
436
Mid Lincs
I am exactly the same, I said to my sister the other day, for some reason I am more laid back because we can't go anywhere now. I am at peace because I don't feel the pressure to go out and maintain the normal, as such as it was, or feel guilty that we haven't done anything. To me it's a bit of a blessing in disguise.
I am fortunate that my OH is still good company, he's been suffering this last 10 days with an infection and this morning was very tearful because he recognises his restricted abilities, it's sad to see him upset, but the up side of that is it means he's recovering and is again understanding of what is going on around him.
 

Debbie J

New member
Mar 23, 2020
5
Scotland
These responses are so heart warming to read. Honest and frank in a time where we have no control over anything at all - some have been living with this for a lot longer and the fact that 'going out and maintaining the normal' is not allowed is giving a sense of peace and lessening the pressure must be a positive. Take care and stay healthy x
 

PalSal

Registered User
Dec 4, 2011
804
Pratteln Switzerland
I am not surprised that you are enjoying your time out. You have been doing this for so many years and I am sure you are taking this enforced break to have the chance to recharge your batteries and in a way you are recuperating from years of having to be responsible for another's welfare.

Obviously when you started on your experience with Nick's illness, you were much younger and perhaps needed to maintain your outside life to help keep yourself together, your way of dealing with what lay ahead of you which at the time was a great unknown.

Now that you are older, your needs have changed and with Nick being in his routine and happy to be with you, you can let the world go by for a while. Now again we have no idea of what lies ahead of us or for how long this situation will last, nor do know what the world will be like when this has passed. We might all need our courage when is all done.

Read a good book, enjoy a glass of a wine and indulge in your peace, God knows, you've earned it.
Laswson58...thank you for your kind share. I hope you too are staying healthy and handling this situation.
 

White Rose

Registered User
Nov 4, 2018
419
Hi @PalSal nice to read your post and that you are able to have some relaxing time with Nick. I agree, the pressure is off a bit for some reason, maybe it's like you say, everyone is in the same boat. In a way we carers may have the advantage because we are more used to restrictions on our lives and our time. I'm having trouble keeping up with TP though because my partner does demand attention all the time, if I'm not doing something with him he'll sit with his head hung looking feeling sorry for himself. Or he'll get his gloves and jacket on (amazingly I've been putting his jacket on for him for a couple of years and somehow when he wants to he can put it on for himself!) and try to go out (maybe because the weather has improved). Trying to persuade him that he can't go out without me is difficult! I am grateful for his company though at this time, it gives a structure to the day, you need to get up, get dressed and get meals, etc. It's perhaps harder to find motivation when you live on your own. And for once my 'to do list' can be ignored, definitely a positive! Glad you can still take long walks with Nick.
 

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