• 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<.

Dilemma

None the Wiser

Registered User
Feb 3, 2020
248
0
I’m turning to all you lovely people here that really know what life is like with someone close that has dementia.
My husband went into care 6 months ago. I’m still not able to visit him in his room, and can only visit twice a week. Full PPE etc. I’ve been very concerned and diligent to make sure that I don‘t go to any events indoors with more than about 10 people, and wear my mask indoors in shops, public transport etc. so that I can continue to visit him. The threat from the home is that if they have two people who test positive (staff or residents) they will close for two weeks.
My granddaughter tested positive for COVID on Monday, and now half her class are off school with it. I decided not to visit my husband at the beginning of the week in case I was a carrier ( as I saw my granddaughter at the weekend). I had a PCR test on Tuesday which was negative, and also a lateral flow test today, which was also negative. I’m due to see my husband tomorrow, and really want to go, but would be mortified if I took it into the home.
In addition, as the weather becomes colder there will be more events indoors. I have been invited to a 40th birthday party on Saturday where there will be about 30 people indoors in a smallish house. I’d really like to go to this, as it’s with ex colleagues that I haven’t seen for quite awhile. Now that I’m living alone I feel that if I keep turning down invitations people will stop asking me. It’s such a dilemma.
My one wish is to be able to see my husband whenever I want. People who think they’re being kind say to me ‘as he doesn’t know you anymore he won’t miss you’, if I have to miss an appointment. I wish it was as straightforward as that. Even though he is barely recognisable as my husband anymore I find that I really need to see him.

Am I being over cautious? Should I go to some indoor events and just shrug my shoulders and hope for the best? What are you all doing? Do you continue to shield?
 

DennyD

Registered User
Dec 6, 2016
262
0
Porthcawl, South Wales
The unit my husband is in closed for visiting from 10 Sept, they are now allowing a one 20 minute session with him indoors and the relative outside. Tomorrow will be the first time me visiting. In a way I dread the potential hurt as I know it will be a futile exercise from his point of view. Those who say he doesn't know me, do not grasp the hurt this brings. Whether this is true or not, I don't know, but I've always regarded us as an item, we are part of each other. It is important for us both to see each other, even if he does not recognise me. Like you say 'there is a need to see him'. I continue to be careful, and yes I need to continue with my life, but he's part of my life. So sometimes I do avoid places where there is a higher risk. It remains a gamble, but don't let that stop you seeing him. Also, even in the awful event the home does have to close, there is no way of knowing who brought it in. But if you find comfort by visiting him, do. I know it helps me.
 

Andy54

Registered User
Sep 24, 2020
110
0
The home my wife is in still has visiting by appointment only (realistically no more than twice a week due to demand on slots) and I too have not yet seen her room after six months . Fortunately PPE have been reduced so it is now just mask required in the public areas or when moving around the home. Rapid flow tests are required before a visit. It is difficult when visiting is so regimented and we can but hope that eventually spontaneous visits may return. There has been one occasion when visiting was suspended due to a resident testing positive.
As to being overcautious I think you have to remember that you too have a life and I wouldn't deny yourself the opportunity to do something for yourself. I don't have a social life myself at present and like you I take sensible precautions when shopping, using public transport etc, but when an old friend got in touch recently and suggesting meeting in a pub I jumped at the chance. I think that you have to accept that there is always some risk and trust in regular rapid flow tests.
 

None the Wiser

Registered User
Feb 3, 2020
248
0
The unit my husband is in closed for visiting from 10 Sept, they are now allowing a one 20 minute session with him indoors and the relative outside. Tomorrow will be the first time me visiting. In a way I dread the potential hurt as I know it will be a futile exercise from his point of view. Those who say he doesn't know me, do not grasp the hurt this brings. Whether this is true or not, I don't know, but I've always regarded us as an item, we are part of each other. It is important for us both to see each other, even if he does not recognise me. Like you say 'there is a need to see him'. I continue to be careful, and yes I need to continue with my life, but he's part of my life. So sometimes I do avoid places where there is a higher risk. It remains a gamble, but don't let that stop you seeing him. Also, even in the awful event the home does have to close, there is no way of knowing who brought it in. But if you find comfort by visiting him, do. I know it helps me.
Thank you for your reply @DennyD. I’m so sorry to hear that you haven’t seen your husband since 10th Sept. it really does seem so very harsh. Im trying to treasure the moments that I do get with mine even if it’s not really how I would want it to be.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,391
0
High Peak
30 people inside a small house isn't great! I can understand your caution. But you have a life and a future to consider too, so don't cut yourself off. Perhaps you could explain to your ex-colleagues and suggest a smaller meet-up at another time?
 

None the Wiser

Registered User
Feb 3, 2020
248
0
The home my wife is in still has visiting by appointment only (realistically no more than twice a week due to demand on slots) and I too have not yet seen her room after six months . Fortunately PPE have been reduced so it is now just mask required in the public areas or when moving around the home. Rapid flow tests are required before a visit. It is difficult when visiting is so regimented and we can but hope that eventually spontaneous visits may return. There has been one occasion when visiting was suspended due to a resident testing positive.
As to being overcautious I think you have to remember that you too have a life and I wouldn't deny yourself the opportunity to do something for yourself. I don't have a social life myself at present and like you I take sensible precautions when shopping, using public transport etc, but when an old friend got in touch recently and suggesting meeting in a pub I jumped at the chance. I think that you have to accept that there is always some risk and trust in regular rapid flow tests.
Thank you @Andy54. For some warped reason it’s good to know that others are in the same position, though I wouldn’t wish it on anyone. You sound as if you’ve come to accept it. I seem to find myself very upset on some days, accepting on others, and really angry on others. I really am all over the place with this whole thing!
 

None the Wiser

Registered User
Feb 3, 2020
248
0
30 people inside a small house isn't great! I can understand your caution. But you have a life and a future to consider too, so don't cut yourself off. Perhaps you could explain to your ex-colleagues and suggest a smaller meet-up at another time?
Thanks @Jaded'n'faded (love that monicker) I think it might be too many. I have been out for a meal with a small group, and to an exhibition at ‘The Tate’ in London, but neither involved me feeling uncomfortable with space and numbers. This party does. In addition, people will hug! I love a hug, and do need several at the moment, but not under the present circumstances!
 

None the Wiser

Registered User
Feb 3, 2020
248
0
I haven’t been on here for awhile as I’ve been feeling quite down, not really knowing how to cope with the changes in my life. I’ve forgotten how helpful it is to share with people who really understand. Thank you for being there.
 

MartinWL

Registered User
Jun 12, 2020
1,437
0
We know from PHE surveillance data that private homes are the commonest setting for transmission of the virus by a large margin, this has been the case all along. So a house party with 30 people present is far more risky than a bus ride or an art gallery. The virus is airborne which is why, belatedly, ventilation is now acknowledged to be critically important as a way to reduce transmission. The $64,000 question is whether your hosts are willing to host the party with all the windows open. With the weather getting colder that may be a big ask. Of course vaccination is also relevant and if you and husband are both vaccinated yourvrisk calculation will acknowledge the reduced but not eliminated risk that you might catch it and pass it on.

It really is a personal choice as to the level of risk you want to accept, where zero is not an option for anyone except a hermit. There are difficult considerations, including the quality of life of the person without visitors compared to with visitors. I have some of the same issues myself. Don't forget also that covid isn't the only virus in town.
 

None the Wiser

Registered User
Feb 3, 2020
248
0
Thank you @MartinWL. I have been cautious up until now so probably need to remain cautious. I think an indoor party is a step too far. And you’re right, there’s a nasty sickness bug doing the rounds. I just want to try to have some kind of life whilst also doing my bit to protect the care home and my husband.
 

jennifer1967

Registered User
Mar 15, 2020
7,744
0
Southampton
if you havent been mixing with that many people then the chances are your immunity might be lower and could pick up any viruses not just covid. i didnt go out for a year, my husband was shielding until april, ive been going out on the bus for a couple of months and caught like a fluey virus doing the rounds as i hadnt mixing with people. i think sooner or later, you are going to catch one of the viruses going around. have you had a flu jab because this might stop at least the flu?
 

Violet Jane

Registered User
Aug 23, 2021
565
0
Being able to visit your husband whenever you want is not compatible with having a social life with no risk of catching COVID. As Martin says, short of being a hermit you cannot eliminate all risk. I think that it’s a question of weighing up the importance of the social event and the risk attached to such an event. If the party was to celebrate the wedding or important milestone of a close family member or friend then I might be inclined to go and put off a visit to your husband for a couple of weeks afterwards. Personally, I probably wouldn’t attend the party you mentioned unless the birthday boy or girl was a really close friend.

I understand your anxiety about turning down invitations and suggest that the best way of dealing with this is to explain why you can’t attend and make an alternative social arrangement straight away, which will demonstrate your interest in maintaining the friendship.
 

None the Wiser

Registered User
Feb 3, 2020
248
0
Thanks @jennifer1967, I have had my flu jab (just), but haven’t had an infection for a very long time and must be susceptible particularly as I’m feeling vulnerable! Good point.
I think maybe I’m over complicating this decision @Violet Jane. You’re right, if it were a close family member it would be different. Thank you for this clarity. I will suggest a very small tea party to celebrate.
Decision made, it’s not worth jepardizing the few visits that I am allowed.
 

jennifer1967

Registered User
Mar 15, 2020
7,744
0
Southampton
Thanks @jennifer1967, I have had my flu jab (just), but haven’t had an infection for a very long time and must be susceptible particularly as I’m feeling vulnerable! Good point.
I think maybe I’m over complicating this decision @Violet Jane. You’re right, if it were a close family member it would be different. Thank you for this clarity. I will suggest a very small tea party to celebrate.
Decision made, it’s not worth jepardizing the few visits that I am allowed.
the flu jab takes 2 weeks to work as well
 

Wildflowerlady

Registered User
Sep 30, 2019
650
0
Hello @None the Wiser I think its sensible for you to just mix with a small group and feel much more comfortable about your visits to your husband. In January I was visiting my dad in the hospital and then the CH was being very careful. I did not even mix with anyone at Christmas, my daughter stayed in Edinburgh so I didn't see her and her husband, my partners son also did not visit at our request. I did the shopping by click and collect from Tesco car park as I didn't want to risk picking the virus up and taking into the CH give to my partner or indeed catch myself. My dad caught covid the CH did say 3 staff members had a positive test and someone else from the hospital was admitted that had covid but dad passed with advanced dementia as was EOL. The positive test only came back to the CH the day before my dad passed and until then I was totally unaware dad had covid. I took lateral flow tests every visit all negative. I caught covid from visiting dad I had a positive test just over a week later but despite being really unwell and admitted to hospital I can be absolutely sure I didn't take it in to the CH so no guilt there. I am glad I saw my dad briefly the day he died as was allowed a 10 minute visit with the addition of a visor over the mask. My contact with the staff was very limited went into the lift to his floor alone so my conclusion is I likely caught it from the atmosphere in his room. I did wear full PPE during my earlier visits and sanitized my hands when touching lift etc showered when I got home. I still wear masks in shops and continue to be as careful as I can despite being double vaccinated as my partner is 78 I am 62 but I try not to become paranoid and daughter and partners son now visit. Partner is having his booster next week he didn't catch the virus unless he had no symptoms as we were careful even within our home and due to the fact I was visiting dad. I agree you must still have a life and I'm sure your friends will understand if you prefer to meet in smaller groups. I think is still wise to be a bit cautious as its an awful virus which very nearly cost me my life and I was healthy with no underlying conditions. I actually feel very lucky to still be here as it has taken a long time to recover and I was only discharged from the hospital respiratory clinic last week. Take care enjoy your friends and see your husband which is important too.
 

None the Wiser

Registered User
Feb 3, 2020
248
0
Thankyou @Wildflowerlady, what a time you’ve had. I’m sorry to hear that you lost your dad to COVID. Please accept my condolences. It seems even when we are being ultra cautious it can invade. Yours certainly is a cautionary tale. How dreadful for you then to get it yourself and be so ill. I think, with the opening up of everything, it is easy to forget how deadly the virus can be for some people.
From everyone’s response on here I am now of the opinion that I must remain cautious, and ignore those people that keep saying “you can’t live like this forever”. I will continue to act sensibly, and with caution.
I hope you continue to make a full recovery, and that the rest of your family stay virus free. Thanks for sharing your journey. Much appreciated.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,970
0
Kent
Infection with Covid could be relatively mild or it could land you or those you mix with on a ventilator. The problem is no one knows.

My rule of thumb is better safe than sorry even if life is a bit isolating at times.
 

Chaplin

Registered User
May 24, 2015
156
0
Bristol
I’m turning to all you lovely people here that really know what life is like with someone close that has dementia.
My husband went into care 6 months ago. I’m still not able to visit him in his room, and can only visit twice a week. Full PPE etc. I’ve been very concerned and diligent to make sure that I don‘t go to any events indoors with more than about 10 people, and wear my mask indoors in shops, public transport etc. so that I can continue to visit him. The threat from the home is that if they have two people who test positive (staff or residents) they will close for two weeks.
My granddaughter tested positive for COVID on Monday, and now half her class are off school with it. I decided not to visit my husband at the beginning of the week in case I was a carrier ( as I saw my granddaughter at the weekend). I had a PCR test on Tuesday which was negative, and also a lateral flow test today, which was also negative. I’m due to see my husband tomorrow, and really want to go, but would be mortified if I took it into the home.
In addition, as the weather becomes colder there will be more events indoors. I have been invited to a 40th birthday party on Saturday where there will be about 30 people indoors in a smallish house. I’d really like to go to this, as it’s with ex colleagues that I haven’t seen for quite awhile. Now that I’m living alone I feel that if I keep turning down invitations people will stop asking me. It’s such a dilemma.
My one wish is to be able to see my husband whenever I want. People who think they’re being kind say to me ‘as he doesn’t know you anymore he won’t miss you’, if I have to miss an appointment. I wish it was as straightforward as that. Even though he is barely recognisable as my husband anymore I find that I really need to see him.

Am I being over cautious? Should I go to some indoor events and just shrug my shoulders and hope for the best? What are you all doing? Do you continue to shield?
I just wanted to chip in, Government Guidance now permits an Essential Care Giver for each care home resident. And ECG is allowed into the home even during an outbreak of Covid as long as the visitor is not Covid positive. You need to speak with your husbands care home and tell them you want to be his ECG. They cannot refuse and if they do speak to the Relatives and Residents Association.
It is important to remind the home that an ECG is permitted for mental well being as well as helping feed or encourage your husband to eat if that was an issue.

You’ve had plenty of feedback on your other questions so will let you ponder those but please get yourself confirmed in writing as an ECG.
 

Wildflowerlady

Registered User
Sep 30, 2019
650
0
Thankyou @Wildflowerlady, what a time you’ve had. I’m sorry to hear that you lost your dad to COVID. Please accept my condolences. It seems even when we are being ultra cautious it can invade. Yours certainly is a cautionary tale. How dreadful for you then to get it yourself and be so ill. I think, with the opening up of everything, it is easy to forget how deadly the virus can be for some people.
From everyone’s response on here I am now of the opinion that I must remain cautious, and ignore those people that keep saying “you can’t live like this forever”. I will continue to act sensibly, and with caution.
I hope you continue to make a full recovery, and that the rest of your family stay virus free. Thanks for sharing your journey. Much appreciated.
Hi @None the Wiser dads death certificate did not actually mention Covid at all which I was surprised at given his positive test result. I can only assume that as the hospital had returned dad to the CH as being EOL the doctor that confirmed his passing decided to put Advanced Dementia and Cerebral Event ( hospital had said a CT scan done whilst he was there showed a mild stroke had taken place ). Dad had only gone into the CH in November 2020 as carers could no longer cope with him in his home. My sister and I were also involved in some caring for dad as we lived close. When making arrangements with the funeral people to collect dad from the CH I did make sure to tell them of dads positive test so they would be aware I'm sure the CH would have mentioned it too. My dad was not allowed to have his own clothes for his burial which my sister had already selected and I would have been taking them to the funeral home as I did for my mum. Visits to see dad in the chapel of rest were banned too but its likely that no one would have gone to see him other than me if it had been allowed and my required isolation period completed. My sister wouldn't go back to the CH once she knew dad had a positive covid result but she had looked through the doorway of his room briefly the day the test result came back but this was only because she had already arrived at the home for her visit to him. Sister hadn't seen dad over the weekend so she wasn't as exposed as I obviously was. I had visited dad the day his test result came through and before sisters visit I only received a call after I got home. I actually missed dads funeral by one day as the hospital wouldn't discharge me in time to go and I was discharged the following evening. I briefly managed to visit mum and dads joint grave the day after I came home as was absolutely gutted to have missed his funeral. I am recovering well now thank you I have just a slight cough which I assume will go in time. I recently received an email an invitation from the vicar that conducted my dads outdoor service last February asking if I would like to go to a Remembrance Service on the 31st October so partner and I will now be able to attend that. To be honest I am still amazed as to how many people don't take the virus seriously it hasn't gone away in my area it has actually shot up again. People will say its like flu but its not if you get affected badly as I did pneumonia and a blood clot in my lung and I only just came off blood thinners last week. Over the months since dads passing I have had to have a follow up X Ray, another CT scan 2 walk tests four months apart and a Spirometry test plus an Echocardiogram. I will continue to act with caution for as long as is necessary. and really hope I never catch it again. If I could turn back time would I still have gone to see my dad yes I would but obviously I wouldn't have wished to catch covid. My partner also agreed with my visits at the time and he was fully supportive of them however my catching covid did cause him a fair amount of stress as he was worried about my recovery.
 

Frank24

Registered User
Feb 13, 2018
238
0
I am fairly young to have an elderly mum in a care home and Im not really doing any of the normal things I would do when I have a visit planned. I list as often as I can as I am a essential carer status but worry greatly about taking Covid into the care home with me. Its so hard the reduced contacts and visits.