How's everyone coping?

[White Rose]

I haven't posted for a while, no time really, my partner is becoming ever more dependent and I still work 3 days a week (for my sanity), although that may change soon, so there's little time for reading and writing emails, etc. I've just sat my partner upstairs where it's nice and sunny, with a DVD on, which looks like a lot of fun but he'll just fall asleep in front of!
So I wondered how everyone is doing? Have things become even more difficult in the current crisis? Do you have people to shop for you? Are you managing to get hold of the supplies you need?

My daughter's just gone to the supermarket after a 50 minute wait to take stuff into the local tip - they are restricting the number of cars going in. I usually just pop to a local shop now because it's too much hassle in the bigger shops with the queues and I can't take OH with me, too risky for him.

Well at least it's sunny so some gardening later.

Happy Mother's Day to all mother's x

 

[Shedrech]

hi @White Rose
local shops are gling to be a real help ... as long as folk don't abuse them!
I hope you and OH enjoy today's sunshine each in your own way ... time I had some fresh air too

 

[RosettaT]

A lovely suny day always makes things seem better. The birds are
Chasing each other round the garden.
I had a lift yesterday, my lovely sister had to close her coffee shop so dropped me off some milk, eggs, bacon and mushrooms.

 

[Lin47]

It was alright until I was furloughed now I am home all the time I was expecting trouble due to the change of routine. It took two weeks but mum was very confused last night apparently we live in a three bed semi detached caravan. She was convinced of it. She was up and down all night. Here's hoping she settles down .

 

[jelba]

Not to good mum in a care home and looking after my dad who had a acute stroke last year and has trouble understanding what is going on and getting angry with himself. On furlough so got no escape im trying to be strong but each day is getting harder for us both

 

[Lin47]

Not to good mum in a care home and looking after my dad who had a acute stroke last year and has trouble understanding what is going on and getting angry with himself. On furlough so got no escape im trying to be strong but each day is getting harder for us both

I am so sorry to hear that. This is going to be a problem in lock down as a lot of people will be stuck with people and are feeling trapped. I have also been furloughed so I am at home with my mum. This is why I joined the forum, at least here there are people who understand. Hang in there this will end and we can all look forward to better times when the world is free.

 

[Galanthus]

Hi Buckeroo,

I‘ve no practical advice to offer, I am only at the beginning stages of this journey, and our doctor’s assessment has now been postponed, obviously.

But It struck a cord with me when you mentioned no hobbies: my mum (newly diagnosed) has never had any hobbies or interests of any kind. Her quality of life too is as you say, nil. I struggle to know what to do for her, she has become more and more reclusive, and I imagine now some of the lack of interest in things is down to depression, as she doesn’t see anyone but us, and doesn’t want to go anywhere. I recently took in a jigsaw to do together, but I couldn’t engage her with it.

I’ve realised though that there is only so much I can do. I am an only child, until recently I was working full time (and hope to go back at some point), but my husband is great at helping out with her. She lives in an annexe with us, but she resists our efforts so much, that lately I have decided to take each day as it comes, and to try not to worry.

It takes its toll on my family life too. She and I never got on, I have her here from a sense of duty (and compassion I guess) . We learned quite quickly that when I used to take her to the supermarket (those were the days!) that hour in her company was enough on my return to bring about an unprovoked aerial attack from me on my husband and daughter.

You will I’m sure get brilliant ideas and support from the sages on here, this is an amazing community. Sorry I can’t be of any practical assistance, but suffice to say you’re not alone, I understand the feeling of wanting to help and improve things and yet being at a complete loss as to the way forward. I hope you manage to find a few positive tweaks.

 

[lemonbalm]

Hello @Buckeroo. Oh lord, this is exactly how my parents were. "Feisty" and "complicated" were words I used to describe my mum too. I don't think there is much you can do for now apart from keep in touch and make understanding noises when you speak to them. It is heartbreaking, frustrating and wears you down but, as you say, they aren't in danger or in need of medical assistance at this point. Is there anything they enjoy at all, either together (sounds unlikely but there may be something!) or separately, that they can do indoors or in the garden?

At some stage, something will probably happen to enable intervention but, for now, I think you are doing the best you can do. Keep posting for support and have a good old rant if it helps! I think couples often get into the habit of resenting and almost hating each other but there's often a kind of love there under the surface ?.

 

[maryjoan]

I am not coping - simple as!

 

[Philbo]

I am not coping - simple as!

I thought I was coping pretty well but I reckon the cracks are starting to appear? My dementia journey ended after my lovely wife passed away in January. I have been helped along my own "journey" since then by my family and friends.

Of course I've managed to keep in touch via messaging, Facebook etc but I am finding that there's no substitute for physical socialising (no surprise there, I know but I didn't realise how much I took it for granted).

So although I have been going for regular walks and the odd food shopping excursion, I have started to feel very isolated. I am glad, in a way, that Lyn is no longer around, as the thought of not being able to visit the nursing home would be unthinkable but the fact that she has gone only seems to amplify the loneliness of this current craziness.

Let's hope that we can all see some light at the end of the tunnel soon?

Phil

 

[Grahamstown]

I agree with you Phil, I feel that I am in a sort of limbo, coping but beginning to realise that this is going to go on for a long time for my age group (80+). Where is my husband? He is in another world where I cannot go and I am struggling to grieve because I have to keep going day by day. I am pretty contented, although I am alone most of the time, I don’t mind my own company. I am beginning to wonder if life will be much different when we can enter more normal life, and that is depressing. The other thing I have noticed is that there was a huge amount of audio visual contact during the first week or two of the lockdown, but as the weeks go on everyone is in the same boat, starting to feel it and contact has really dropped off. I contact people myself and they seem pleased to hear from me, but I get the impression that they need the comfort. Those who had a strong active social life are really feeling it and since I haven’t had that for ages, I am used to it.
Sue

 

[White Rose]

There's just no answer is there - just to remind ourselves that IT WILL END! I've discovered Zoom and Houseparty - I particularly like Zoom as you can use it on the laptop. Easy to download and free. It's nice to actually be able to see people when you talk to them.
As @Grahamstown says, we are at least used to this kind of life more than non carers who might have a busier social life.
My answer for feeling down is my favourite music on, preferably quite loud. Luckily my PWD also likes music.
A friend of mine, on her own, dresses up as favourite characters from movies and films herself miming to songs in character - some kind of app available probably.
Also essential to get out for a walk each day if you are able.

 

[Fitzalan]

I share your pain. I live with and look after my mother who is 94 and has dementia. During the week it isn't too bad as I'm working from home, and can concentrate on that (most of the time). But I really don't get any space to myself the rest of the time, except when I go to bed ( and sometimes not even then). If I go anywhere in the house, within 15 minutes she's followed me wanting to know what I'm doing, and getting out of the house is a struggle, even for 30 minutes exercise each day or the weekly supermarket shop. Tbh, I'm struggling to find ways to occupy her - she also has macular degeneration so reading or watching tv isn't really an option, and she tends to talk through talking books. She has been knitting, but I have to be on hand to pick up the dropped stitches. And the continuous questions about why she can't go out, what is a virus, how do you catch it, will it kill you etc etc is wearing. So I am struggling too, and the thought that she (and therefore I) may have to stay in lockdown for another year or more is thoroughly depressing.

 

[Cat27]

Welcome to DTP @Fitzalan
It’s incredibly hard to be stuck indoors without an end in sight. Please keep posting as you’ll get lots of support here.

 

[Fitzalan]

Thanks Cat27. Just being able to talk about it with people who understand helps!

 

[Grahamstown]

Hello everyone! I too love my music almost as much as anything else @White Rose. I am also watching a live game drive from Kruger National Park which shows twice a day and is good background with exciting sights every now and again. I have felt very crotchety today talking to an old friend on landline who has always looked down upon us who use the internet. Her options are so limited, no extras on her TV & only a landline, so she watches far too much news 24 which I personally don’t think is a good idea. I just feel despair when everything is on the internet, even government information and instructions. She won’t even call the doctor to increase her pain relief. I don’t think she has dementia but she does have some cognitive impairment in conversation. The only thing I could do was to encourage her to call the doctor and she promised to call tomorrow. It really depresses me but in the current situation there is little I can do. I am coping very well and feel so sorry for her self inflicted handicaps. It makes me wonder.

 

[AliceA]

I have a relative, who starts with, how are you coping, how are you feeling?
She then continues with email pages of negative news, medical histories of family, friends and people she not not know but has heard about. She has 'threatened' to phone, she lives in a different time zone too. Her timing is really out!
I am sure she means well but I I do not want to be fodder for her doom and gloom.
Like your friend. Sue, I find her dialogue is an irritant, she is her own worse enemy. With few interests apart from her garden she laps up any bad news.
I am just wondering when she will hear that people are actually phoning .
I am pleased you are doing as well as you are, Sue, I too am coping well as well as I can and better than expected.
I do talk to my love a lot, should this relative tag that, a van with men in white coats may turn up! Xxx

 

[jennifer1967]

im lucky although i was struggling and my mental health took quite a big dip as my support system had gone but my husband although got vasc. dementia gives good cuddles and encouragement. i had all these negative thoughts that i wasnt looking after him properly or protecting him enough while shielding.ive learnt to accept especially from the support of the forum that im not wonder woman but a lady doing her best in an awful situation

 

[White Rose]

I am also watching a live game drive from Kruger National Park which shows twice a day

I've been watching some of that as well @Grahamstown, been trying to get my partner interested as he loved the couple of safaris we did, but sadly nothing interests him for more than a minute. Re. your friend, there are simply some people that can't be helped and really, given what you've been through, you don't need that kind of stress. However, it must be very difficult for people who've not been used to using the internet, so much requires us to be computer savvy these days.

 

[Grahamstown]

I have felt very out of sorts today triggered by the phone call, but the day improved because I drove a short distance to do a distancing handover of my husband’s iPad to our granddaughter. The whole family was there so we had a little chat and my son asked me if I was going for a walk, it was a rural area and hardly any people around. They went home because they had already had their walk. At first I said no but it was a lovely day so I did and walked 5kms, heard a lot of birdsong, saw a grey wagtail in the stream and a grey heron flying up and down to different spots. It really made me feel a lot better. Now that we can drive to a walk as long as the walk takes longer than the drive I might do that occasionally. We used to go on holiday safari holidays too @White Rose and he just loved them but it got so that he couldn’t take the videos in, so upsetting. I too used to get ‘and how are you feeling’ all the time Alice, and the journalists ask people who have lost someone to Covid-19, ‘how do you feel?’ both such stupid questions. When the immediate anguish had passed I started to recover from the stress of caring for him, and now I do feel the loss acutely at times. I found my husband’s shoes lurking under the table yesterday and that was awful, I bought them for him for ease of putting on with Velcro straps and the whole picture of our lives hit me. I hugged them before I put them away. So it’s ups and downs but to be honest the virus is not worrying me too much because I am as careful as possible and people where I live are complying very well so it’s not too hard when you have your exercise. We just have to make the best of it.