Hello all carers. My husband has Lewy Body Dementia. I choose not to have any professional support but normally our family give us support by visiting or us visiting them or taking my husband out to give me some 'me' time. Of course since the lockdown all this support is suspended. I am struggling with it. My husband is more confused as we are on our own all the time, he misses the social interaction with family and misses the places we normally go. He does not understand the situation. He tells people on the phone that he goes out to work every morning and insists there are other people living with us, so I cant discuss the news with him sensibly. It is very lonely and isolating. He is sleeping quite badly, so we both have bad nights. Just wanted to connect with fellow carers out there who are no doubt feeling the same. Take care everyone.
Loss of support network during Coronavirus
- Thread starter Larker
- Start date
Welcome to the forums, @Larker. You will certainly find others on here struggling with lack of day centres and other contact, but hopefully as you read and post you will feel a bit less isolated. Discussion of the crisis with my partner who has vascular dementia is equally hard, so I understand something of how you feel there.
Hello @Larker . The lock down is certainly causing a lot of problems for carers and for people with loved ones in care homes. Are your family able to contact you using video calls, so that you and your husband can see them? If not, hopefully you are getting plenty of telephone contact and perhaps they could send you letters and photographs which you and your husband look at together. Are you able to get outside at all? Writing letters and posting them is a nice way to spend this quiet time if it's possible.
Thank you. Yes we do go for a short walk and family keep in touch by phone and video calls. This week he has suffered badly with hallucinations and delusions. He claims there is someone in the house constantly, even during the night. My husband is very frightened of him and gets very distressed. I almost rang for professional help at the weekend but frightened they would admit him somewhere when he would be totally alone and I could not visit. So I persevere and hope this instance will pass. All the best to you.
Thank you for your replies. Talking Point is the only support network I have apart from family. Professional support is always lacking and worse with the Coronavirus. The GP knows nothing about the diagnosis. The mental health services are stretched and refer us back to the GP. Admiral nurses are not available in our area. Dementia is a very lonely place. When I am faced with a new situation, someone on the end of the phone just to confirm that this is an expected symptom would really help.
Is it actually an hallucination, or is he perhaps seeing his own reflection in mirrors and windows and thinking its another person? Not recognising your own reflection is very common in dementia. Try removing or covering mirrors and shutting curtains early to prevent him seeing his reflection and see if that helps.
Yes this lockdown has been a tipping point for many. My SIL has been kept afloat in her Sheltered Housing with good staff and lots of activities going on. Since these all stopped and staff "working from home" she is displaying obvious dementia and the authorities are now on full alert and she is heading for a residential care home.
I had the same problem when OH was still at home. He kept "seeing" his father (long dead) in our house, then loosing sight of him, harassing me to find his Dad and make him cups of tea. I posted about it on Talking Point and was given the advice to remove/cover mirrors, which worked a treat. Obviously OH was seeing his own reflection and processing it in his malfunctioning brain, came to the conclusion that this old man who looked quite like himself, must be his Dad because he still thought he was still quite young. Similarly he often thought that I was my mother, because as I have aged I look like my Mum in her later years.
Thank you Canary. Thankfully things are much calmer this week. The 'person' appears to have left and my OH is no longer frightened. Still very confused but I'm used to that. Thinking about your comments, when I asked my OH what this person looks like, he said he looks similar to himself. Also one night he shouted at the mirror. Thanks for the info.
Hi wifenotcarer. How are you today
i came across one of your posts while I was looking back at my history on TP. Last year it was and you were commenting on paying the fees for the home. You spoke of not worrying about how much it was as the council would eventually take over anyway.
i wish I could have your attitude towards this and be a bit more rational. Care homes are struggling and I wonder how long it will be till Bridget's home is in financial difficulties. I worry about this and I’m miserable anyway not having Bridget here.
I know we all handle the situation differently and I admire your resilience and composure. I, on the other hand, am fighting depression over this and cannot come to terms with any of it.
i also know there’s no magic bullet and the whole situation is confused by Coronavirus. I just wish I could have some mental respite from the whole business, one day without the misery of it all.
peter
Ah Peter. I had a wee laugh at you praising my 'resilience and composure'. I must be doing a good job of going into 'hostess mode' when I post on here, as I do during Skype Calls with OH and my family. If you had access to the dark recesses of my mind you would find a very different scenario. I think the reason I appear to cope so well is that I have suffered from chronic depression for most of my life, which has forced me to become adept at putting a brave, cheerful face on in public - I can fool most of the people, most of the time.
When I am at a low ebb, I force myself to do something productive. I reckon that I can't feel any worse, so I do the jobs - changing the bed, washing the floor, car or windows, digging and weeding, sawing logs, knitting and making jam, which I really hate. Then at least when the dark cloud lifts, I have something to show for it. When I feel better, I can enjoy the things I like to do- sowing, planting and harvesting, collecting firewood, cooking, playing computer games, Sudoku, crosswords. (Unfortunately no chance of swimming, or a wee run to the seaside at the moment.)
I follow your posts on TP and often you put into words exactly how I am feeling, especially at the moment re the torment that is Skype Calls or through the window waving with our beloved spouses. You are new to this depression business, based on my experience I cannot promise that you will be 'cured' but I know that, in time you will develop ways of coping.
As to the worries about the Care Home, I believe that this dreadful pandemic will lead to a long overdue, complete rethink of funding Care for the Elderly. The tax payers and the Government will have to step up to the mark re proper funding. There have been demands from all sides for Care Homes to be taken under the wing of Social Services or the NHS, not left to the vagaries of profit making concerns. We live in hope.
