Amazed

[PalSal]

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]

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]

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.

 

[Batsue]

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]

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]

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]

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]

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]

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]

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]

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]

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.

 

[jenniferjean]

In a way we carers may have the advantage because we are more used to restrictions on our lives and our time.

You are right. I think for once we are coping better than others because of this. I do feel sorry for anyone who doesn't have the internet and the ability to contact others by it.

 

[PalSal]

My daughter sent a video this morning of our new little grandson, born March 1. We have not seen him much and only from a distance.....no holding or kissing. It makes me really sad.

Nick is happy, things are going as well as can be expected at the moment. Long walks and surrendering to a quiet life which is required of all of us at the moment. I am grateful that he is so fit and most of the time relatively easy.
I was able to order one meal a day for him 6 days a week. I can justify it to myself , in that he is no longer going to daycare 3 times a week and the carers are no longer coming so I can go out for an evening. I am 100% carer again. When I called about getting the meals delivered, they indicated they could not add any new clients to the program. I then contacted the woman who assists me in the local gov't here. Over the years she has been extremely helpful and supportive. She called the program people up and the very next day there delivered of a hot lunch for 18 CHF per day. It is perfect. Nick has a big lunch after our long walk...and morning szuni & coffee picnic. Then I make our dinner, if I feel like it.

Life is different from what it was before and Nick's illness has progressed. I must admit in many ways those early years of the disease were the most difficult,, the insistence from Nick that there was nothing wrong, the clashes of wills, the strange behaviors, the hoarding of household items, the refusal to take medications., and the occasionallly horrible arguments and constant misunderstandings. Now there are no arguments, just minor irritations. His evenings are still difficult, but I do not often have to medicate him. But when necessary he takes the meds easily these days. Luckily, he has not been having too many toilet accidents so that makes life much easier.

I am truly amazed that I have gone back to being the fulltime carer. But it is a lonely place. At leas,t I have kept him fit all these many many years so we can walk together. And the hiking keeps me from having to medicate him so much....and of course the hiking keeps me fit too. Here are photos of yesterday morning....one day runs into the next. I have not been energized to do projects, the house is dirty, haven't planted any of the seeds, still have not cleaned any closets. Just doing next to nothing other than hiking. But nothing seems to matter that much .......we are peaceful that is the most important thing.

 

[Izzy]

I’m glad life is peaceful @PalSal, even though life is so different. It must be hard not to be able to have physical contact with your new grandson.

The photos are lovely.

 

[jenniferjean]

When I called about getting the meals delivered, they indicated they could not add any new clients to the program. I then contacted the woman who assists me in the local gov't here. Over the years she has been extremely helpful and supportive. She called the program people up and the very next day there delivered of a hot lunch for 18 CHF per day.

A similar experience to me. Last year I approached our chemist to ask if we could be added to their prescription delivery service and was told that they were no longer taking on new clients.
I mentioned this to someone at my local Dementia advice group and she managed to get us put on the list.

 

[Agzy]

My daughter sent a video this morning of our new little grandson, born March 1. We have not seen him much and only from a distance.....no holding or kissing. It makes me really sad.

Nick is happy, things are going as well as can be expected at the moment. Long walks and surrendering to a quiet life which is required of all of us at the moment. I am grateful that he is so fit and most of the time relatively easy.
I was able to order one meal a day for him 6 days a week. I can justify it to myself , in that he is no longer going to daycare 3 times a week and the carers are no longer coming so I can go out for an evening. I am 100% carer again. When I called about getting the meals delivered, they indicated they could not add any new clients to the program. I then contacted the woman who assists me in the local gov't here. Over the years she has been extremely helpful and supportive. She called the program people up and the very next day there delivered of a hot lunch for 18 CHF per day. It is perfect. Nick has a big lunch after our long walk...and morning szuni & coffee picnic. Then I make our dinner, if I feel like it.

Life is different from what it was before and Nick's illness has progressed. I must admit in many ways those early years of the disease were the most difficult,, the insistence from Nick that there was nothing wrong, the clashes of wills, the strange behaviors, the hoarding of household items, the refusal to take medications., and the occasionallly horrible arguments and constant misunderstandings. Now there are no arguments, just minor irritations. His evenings are still difficult, but I do not often have to medicate him. But when necessary he takes the meds easily these days. Luckily, he has not been having too many toilet accidents so that makes life much easier.

I am truly amazed that I have gone back to being the fulltime carer. But it is a lonely place. At leas,t I have kept him fit all these many many years so we can walk together. And the hiking keeps me from having to medicate him so much....and of course the hiking keeps me fit too. Here are photos of yesterday morning....one day runs into the next. I have not been energized to do projects, the house is dirty, haven't planted any of the seeds, still have not cleaned any closets. Just doing next to nothing other than hiking. But nothing seems to matter that much .......we are peaceful that is the most important thing.

My kind of walking country for sure and miss it so being confined to walking the local streets and one river walk ha gets too crowded now. As for your journey I empathise with so much it but suppose most of us do depending how far the disease has travelled

 

[White Rose]

My daughter sent a video this morning of our new little grandson, born March 1. We have not seen him much and only from a distance.....no holding or kissing. It makes me really sad.

Nick is happy, things are going as well as can be expected at the moment. Long walks and surrendering to a quiet life which is required of all of us at the moment. I am grateful that he is so fit and most of the time relatively easy.
I was able to order one meal a day for him 6 days a week. I can justify it to myself , in that he is no longer going to daycare 3 times a week and the carers are no longer coming so I can go out for an evening. I am 100% carer again. When I called about getting the meals delivered, they indicated they could not add any new clients to the program. I then contacted the woman who assists me in the local gov't here. Over the years she has been extremely helpful and supportive. She called the program people up and the very next day there delivered of a hot lunch for 18 CHF per day. It is perfect. Nick has a big lunch after our long walk...and morning szuni & coffee picnic. Then I make our dinner, if I feel like it.

Life is different from what it was before and Nick's illness has progressed. I must admit in many ways those early years of the disease were the most difficult,, the insistence from Nick that there was nothing wrong, the clashes of wills, the strange behaviors, the hoarding of household items, the refusal to take medications., and the occasionallly horrible arguments and constant misunderstandings. Now there are no arguments, just minor irritations. His evenings are still difficult, but I do not often have to medicate him. But when necessary he takes the meds easily these days. Luckily, he has not been having too many toilet accidents so that makes life much easier.

I am truly amazed that I have gone back to being the fulltime carer. But it is a lonely place. At leas,t I have kept him fit all these many many years so we can walk together. And the hiking keeps me from having to medicate him so much....and of course the hiking keeps me fit too. Here are photos of yesterday morning....one day runs into the next. I have not been energized to do projects, the house is dirty, haven't planted any of the seeds, still have not cleaned any closets. Just doing next to nothing other than hiking. But nothing seems to matter that much .......we are peaceful that is the most important thing.

It's such a long, hard road for those who care full time for a PWD isn't it? The years go by and we adapt as the person deteriorates but it's incredibly wearying. Today I so wish for someone to come and take my partner out just so I can have a day to myself and not have him following me everywhere asking 'what can I do' all the time or sitting complaining to himself - he does that more and more now, it drives me insane! In my head I see a vision of a patient, happy caring person who sits with him and entertains him, but I'm not that person. I've helped him shower and dress, made breakfast, snacks and lunch, taken him for a walk around the park but it's never enough, he wants me to find things for him to do all the time. I would like to meet the person who could do this day after day with a smile on their face and joy in their heart!

 

[None the Wiser]

Thank you for this thread. It’s been really helpful to read about how everyone is feeling at this very strange time. I can relate to several of the posts.
It does seem easier in some ways now that everyone is subject to many of the restraints that we as carers have to endure. Not having to turn down invitations from lovely well meaning friends, or turn myself inside out to try to find a way to go out to be a part of ‘normal’ life has been a relief, though I agree that this life solely within the Alzheimer’s bubble is extremely wearying. I do find having someone totally dependent on me for care and ‘entertainment’ overwhelming and totally exhausting, especially if there has been a series of very disturbed nights. I do wonder how I will be able to sustain it as long as many of you have, though of course we have little choice. It seems easier to sit with it at the moment as the rest of the world is ‘holding its breath’. Once life starts again out there the reality of the situation will, I feel, hit hard again. Sometimes the responsibility is too much.

 

[PalSal]

It's such a long, hard road for those who care full time for a PWD isn't it? The years go by and we adapt as the person deteriorates but it's incredibly wearying. Today I so wish for someone to come and take my partner out just so I can have a day to myself and not have him following me everywhere asking 'what can I do' all the time or sitting complaining to himself - he does that more and more now, it drives me insane! In my head I see a vision of a patient, happy caring person who sits with him and entertains him, but I'm not that person. I've helped him shower and dress, made breakfast, snacks and lunch, taken him for a walk around the park but it's never enough, he wants me to find things for him to do all the time. I would like to meet the person who could do this day after day with a smile on their face and joy in their heart!

@White Rose Yes to find his inability to entertain himself or just relax so disturbing and irritating. I always found playing as adult difficult (not that he has ever wanted to play anything) but now I really wish I had someone to play games with or something. He wants to be entertained which in his book means a walk in nature. That I provide on a daily basis but only once a day.