In Spain we are already in lockdown. I managed to get provisions in for several weeks. Everyone is self isolating. Schools are shut and only food shops, pharmacies, banks and necessary shops are open...for butane gas bottles etc.
At times like this I'm glad we live on a mountain!
I have to say life hasn't changed much for us, apart from no church on Sundays!
I'm so sorry to hear the heartache of this separation, Kevin. My thought and prayers are with you and with others who are being similarly challenged at this time.
I hope we can draw strength and support from each other at this very surreal and unpredictable time.
Living on a mountain - probably one of the safest places you could be to stay well. I'm glad you have your provisions in.
I see that you have something similar to a Sara Stedy (it looks the same as the Sara in the picture).
And glad you haven't noticed too much change other than missing church. Enjoy your time with Ian. I know it's such a difficult time. Sometimes I wish I was back there, taking care of my husband.
I’m in the US. My mother is quarantined in her nursing facility since March 11. I was going there every day at lunch to help her with her meal. She was legally blind long before her PSP. We talk daily and I asked her how she’s doing with her meals. She said they are helping her fine. I guess we must trust what’s going on the best we can. It’s heartbreaking for all of us not to visit especially my 97 year old dad. The facility is closed to visitors until April 5 hopefully
Oh dear sweet Kevin. I’m so sorry and understand your plight. But know my thoughts and prayers are with you both.
I know you will figure out things to do for Liz wherever you are. Please take care it yourself. It’s a surreal time for this world. Play some music you both loved and send your love to her. She will hear you believe me.
I sequestered myself this past Tuesday after my last visit with mom for her 82nd birthday. (I had already skipped a wedding shower the Sunday prior due to concerns of bringing something to mom other than cake and balloons.) By Friday, the facility mom stays at called with a lock down status (I can't go visit), for anything other than end of life.
My state has now moved to shutting down many daily living activities (schools, sporting events, graduations, public gatherings over 250, etc.) and my husband made the last store run yesterday (much to my dismay - I felt we had plenty to get us through for at least a month! - but he has always been a bit of a fire chaser and I think he just wanted to see the empty toilet paper racks!). I must admit, that I'm a little concerned that the latex gloves I've purchased and stockpiled in mom's room (we are required to provide briefs, wipes and latex gloves for the aides at her facility), may now be pilfered as they are selling for a premium online! But too, I'm glad I had just recently acquired a 3 month supply for her room!
Many people around here are talking about this self-imposed isolation and the need to recognize mental health - and though I don't disagree with this, I just had to think that I'm already well practiced on this front inasmuch as contending with this disease has already been socially isolating.
I too think mom may be in the final stages. Her birthday was absolutely awful, and we had to cancel a 2PM event in which they were going to celebrate her birthday with donuts because she was absolutely fixated on having her shoes put on her feet, and causing such a scene. (Her feet were swollen 4x the size of her shoes and it was impossible to honor this request.)
By the time I arrived at her room the staff had warned me that she was very upset and had been carrying on for 4 hours in an endless loop. For the next 2 hours of my visit I was called every name in the book and she repeated the request to try and have her shoes put on (in a myriad of fairly creative and inventive ways, I might add). Primarily though, it was just sad; she was stuck in a maniacal, obsessive loop and could not appreciate or enjoy her day, my visit, or any expressions of care or love. These episodes have become increasingly more prevalent, and her ability to connect with us in any way other than an obsessive loop, has greatly diminished. Her breathing is labored, her state of mind is constantly in a tortured state of unrealistic self-survival ruminations, and she is hardly able to have any normal human interactions, no hugs, no quiet sitting companionship -- talk about isolation.
I'm glad to hear you can still visit Kevin, and as much as I'm concerned that I can no longer visit mom; I must admit that after the last visit -- I'm not sure it much matters to mom (she isn't able to express any interest or desire for visits from me at this point). So I sit here, and ponder this strange, strange new convergence of events -- like many others, I'm sure.
Gosh, your poor Mum is suffering so. It must be very distressing for you too.
You describe my fear for Liz so well, no hugs, no company etc. The home she is in is striking a balance between encouraging people not to visit any more than they have to and being mindful of people like Liz and the way the illness has already isolated her. It must be hard for you not being able to visit. My heart goes out to you.
Yes, this illness does lead to isolation, as does old age in a similar way. Peoples awareness might well be better when this has blown over.
I hear you! My husband’s home is on lockdown and since I was recently abroad I haven’t seen him for two weeks. Today we finally did a FaceTime meeting so it felt a bit better. They may let me see him outdoors once Ive cleared 2 weeks back.
But now, my grandkids’ daycare is closed and my son is asking me to get on a plane to help them out. As much as I would love that I’m afraid we won’t be able to fly domestically soon and I will be stranded, many miles away from my husband who’s situation could spiral at any time.
Staying close to your man - Good for you. From here it looks like such the right way to go.
Glad you got some face time... That is so precious.
One of my last 'outings' was to nip down to the local watermill (we are so lucky to have one close by) and pick up a sack of wheat. I normally buy my wheat by the sack, to mill at home as needed, but this time it felt like a scene from some weird apocalypse movie. My trips to the mill are a deep pleasure, the throbbing sounds of the water wheel and the gears, the dusty air and the smell of freshly milled wheat. It's little things like that which bring beauty into my day. And, bringing a little beauty into ones day is so important, especially in these times.
Wishing you and yours all of the best.
Warmly
Kevin
The worst part is not knowing when it is going to happen. You have had such a long time dealing with this disease. Liz is quite the fighter. She will fight to the end.
I am thinking of you at this time and wishing you the best.
How smart of you to be so diligent! My hubby caught a cold, I suspect he was exposed during a physical therapy session. For now, it’s just the sniffles and I am not sick. He doesn’t have a fever nor does he have a dry cough so I’m sure it’s just a sinus thing. I keep thinking about running out to the store for a few things but after reading your post I’ve changed my mind. Thank you! We don’t really need anything and if we run out if something I’ll order online and have things delivered. What a crazy time for all of us!
We have a minor cold thing circulating here too. Sniffles, but as you say, no cough and no fever.
My cat has taken to checking me out in the night (0500) - She gently head butts me in the face until I wake up and then looks at me, miaows and climbs on top and then goes to sleep. Even she can sense that we are in odd times.
Feel for you, Kevin and Liz! Yes, it is the right thing to do.
Hope you also have a good supply of flour and yeast!
Have just spent a lovely week away in the Chatham Islands with 24 other lovely OAPs and a lively 50 yr old leader ( house mother). We have thumbed our noses at corona virus and coughed and sneezed around each other, and cracked jokes every time - all of us feeling quite safe in our isolation there!
Has been enlightening to return to the Real World.
We are relatively insulated here and only have 8 cases so far. Now we wait to see if it does escalate like parts of the rest of the world.
Jacinda is doing a great job, tightening the noose on travel and hopefully it will keep things in check.
Meanwhile I wonder if I will have a jazz festival to go to at Easter to a hotel that will not refund my money and tickets I have yet to buy, just in case!
Then I have a local cruise to Stewart Island booked for mid-May.
And have booked my flights to UK early Sept-mid-Oct!!!!
I live in hope - and dont move about too much. Still have a freezer to eat out of and most of what I need.
Neighbourhood seems to be developing an elbow bump instead of a hug! That made me laugh!
Off to the gym tomorrow, where I hope to get a taste of normal behaviour and reset my 'radar antenna'!
You can't keep a good man down, Kevin! Isolation is not new to you. Just your fear that your desire to visit Liz will be interrupted! You have had that before, too. So hang in there!
We all hope that SANITY will resume as soon as possible!
Kevin, you are a gem! We know you have self isolated for the sake of love and we send you tons of hugs and sincere good wishes..... to keep you going strong as ever!
My solidarity to caregivers who have to manage the necessary help from people who come and go from home without whose professionalism and support it would be very difficult to continue.
Well done Kevin. It is very difficult at the best of times but this latest crisis seems to magnify everything. My thoughts and prayers are with you and Liz in the hope you both come through this situation unscathed (relatively). 🙏🙏❤️❤️
My thoughts and prayers are with you and Liz. What a dilemma we all face! Especially for those who are still caring for their loved ones with PSP.
I'm dreading the potential isolation as I was just starting to put my life back together after looking after Chris during his journey.
Thank God he has been spared this as the thought of his carers in and out during the day, potentially carriers of this virus would add to what was already a very stressful situation.
So keep safe dear man, and if needs be love Liz from afar.
With love and blessings to you both and all here on this forum.
I'm right with you in your journey. I too was feeling like I was entering a new phase. After Sandy left there was the planning of his memorial service, then I went away for three weeks but was so glad to get home. Now I am in the Coronavirus stage of grieving. I hadn't read about that stage in the grief books. What does this do for us? Do we replace one of the grief stages with Coronavirus stage? Do we pick up where we left off when this blows over?
I have been thankful, too, that Sandy has already gone on ahead. It would add another layer of stress having the healthcare workers in and out. I am glad he's safe from this. It's good to look for the silver lining although I miss my hubby. The hardest part for me is when I realize that he's not coming back. I needed a break but the thought of "never" is overwhelming. One day at a time is best.
I think everyone is doing their best to isolate from this damned virus. It's frightening to watch the news and see the alarming rate at which it is progressing.
I am already isolated apart from my cat. I would still love Les to be here but that's selfish.
No, not selfish, you and Les are close. I still have Liz here, yet there is a deep empty space where she was.
Yes, aren't cats great. Mine get's me up at 0730, she has just come through for her mid morning groom. She even miaows at me to go and make tea at about five... and won't let up until I go into the kitchen. I'm sure she thinks I cook her dinner which she expects at about six. I'm not sure who is the pet and who the owner!
What concerns me the most is being unable to be with Liz. It is so harsh that there are many people being kept apart from their loved ones. How do we explain that this is not our doing. This virus is causing more pain. I know Les would have reacted badly to any enforced separation.
You mentioned your cat having expectations of you. Mine is exactly the same. I give him treats about 4.00 pm each day and he shouts at my feet if I forget.
I was looking through some paperwork on Monday and had tears rolling down my face. Echo, the cat, came over to me, climbed up me and licked the tears away. I think Les told him to give me a hug. I have never known that to happen with cats. Dogs would do this.
Kevin, we too in Florida are facing your dilemma. We have friends who are supposed to visit soon and I would rather they not, but hubby so wants them too. We are supposed to attend a local birthday party today and again I want to cancel but he insists we go.
I think we should self isolate because if anything happens to me there is no one to care for Mike
Mike's dementia is getting worse along with vision and balance. I think he just wants to grab on to what he can before he can no longer
Hi Kevin. I think of you and Liz often. She is a real fighter isn't she ?
Now I also picture you milling your flour !
It's a crazy world since Chris died. My older son called in with his baby yesterday. As he lives 2 hours drive away we can't be sure when we will manage it again. He is a free lance musician and his next 6 months of work - cruises and festivals - has all been cancelled. No compensation or sick pay. I fear for the future for so many across the world. Isolation seems quite welcome at the moment I fear. Love to you both from Jean xxxx
Kevin,you summed it up perfectly when you said “Frozen in time” and “Waiting for the pause to end”. That so well describes my memories of the last few years of Don’s life.
You seem to do such a good job of staying on top of what needs to be done for your beloved Liz. I can only hope that I did half as well!
I always look forward to your posts because they are helpful to us all.
Hope you will still be able to visit Liz. My Mum's Care Home has just closed its door to all vistors. Dread to think of the mental anguish that this is going to cause. She has Alzheimer's, just hope she will still remember me, when this is all over.
My heart goes out to everyone caring for their loved ones. It must be an absolute nightmare for you all. Just remember to log in here regularly, we are not in lock down, no hand sanitizer needed and cyber hugs are risk free.
My post was poorly written. I am still visiting Liz and self isolating other than that. The home she is in is following the DoH guidelines which may change in the future. However given the severity of Liz's condition they have said that they will make an exception for me. Unless...
Chuckles... Yes, no hand sanitiser needed here... Will do.
I am so sorry about the new added worry about this darn coronavirus. And praying that you can continue to visit Liz. My heart goes out to you. You are wise to self isolate and even wiser to stock up on tea and gin.
Will they allow letters to be sent? For me, receiving a note in the mail is so touching. In our electronic world, we don't do much of this anymore. She can read it over and over or have someone read it to her. If the time comes when visiting is limited, she would have a love letter from you as often as you could send it. It's just a thought. I don't mean to add more to your plate. I know I didn't appreciate it when people suggested more things I could do when I was overwhelmed with caregiving. Take this suggestion or leave it.
So very glad you shared! And so happy to read all the support we have on this site. It takes me out of isolation. My husband is also a fighter and at home, so some different struggles but we remain, all of us, in this together. May you continue to be graced with empathy and compassion. All we have is today so we must find out how we can thrive in the moments we have left. I wish I could share as beautifully as you do. Clear, precise, yet poetic. Love to you and yours
I think of you & Liz often too & many others from when I joined in 2016. BargiePat is another I fondly think of & wonder how he is.
You are wise to keep yourself in best health you can so you can be there for Liz & yourself.
We truly are in the grips of something that is going to change our world, worldwide in 2020 & beyond.
Having been carers or the diagnosed in this group we have experienced isolation & fear.
I'm in the midst of a 2nd complaint currently against social services after they applied for an investigation into me last October with OPG which came back as I was to remain both POAs & no action to be taken against me. They still continue to ignore me or tell me how Mum is.
Coronavirus is going to handily play to their advantage now as no one allowed into the home so I'm expecting a pathetic reply to this complaint again.
Yes that is what they hid behind that she had capacity.
The person who carried out the OPG investigation informed me she does not have capacity for financials but they did not carry out assessment for health & social.
Social services had not informed me of this loss of capacity, hence complaint and also asked what state of capacity is for health and social, access to visit and how they are going to communicate with me as next of kin & POA.
I may leapfrog ombudsman & go straight to court of protection but will cost me money to do so.
How is Liz, you wrote you feel her days may be entering short quantity?
I have not self isolated but the place where my husband is has told us only medical personnel are allowed in the facility.
It is difficult when you want to spend as much time as possible while you can with our loved ones, because with disease you never know. BUT now we can’t even do that.
Hey Kevin, I totally understand. I moved David permanently into a Care Center today and I could not go in to see him settled. I totally broke down when I got home. I am waiting for a call to let me know how he settled in. This lockdown really stinks.
That’s awful. I’m sorry that happened. I will be glad when this over. Hang in there. Hopefully this will end soon.
Yesterday the nurse that sees my husband FaceTimed me so we could see each other and talk a little bit. Maybe someone at the Care Center would do that for you.
This whole situation is very scary Kevin, I am pleased that you will continue to be given special dispensation to visit Liz if there is shutdown. I totally get you're anxiety about keeping well and being concerned that this crisis could prevent you from being with Liz as she gets weaker. Self isolation is a very sensible step to take to ensure you stay well for her. I'm just back from Leicester, my home town, where I was checking out properties and facilities as I am thinking of moving back to be near my sisters, this virus will certainly put that on hold as I'm guessing the housing market will grind to a holt during days of uncertainty. It seems it is affecting every person in some way or other.
You will not get ill as they have balanced the books and found that you have too much on your plate already. So do not fear for yourself - just concentrate on Liz and keeping yourself in one piece.
Sending love and thanks to you who are further down the road.
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