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Feeling drained and guilty........

kennedy1948

Registered User
Oct 7, 2013
58
Huntingdon
My husband Tony was diagnosed with vascular dementia just over a year ago although his symptoms have gone on for much longer. I look in on the forum frequently and am thankful for all the knowledge I have gained from you all. In the past 3 months the disease has progressed and we have had the most awful 10 days and I'm not coping very well. I was out for 30 minutes last week and came back to find he had drunk concentrate fabric conditioner........thinking it was lemon drink! Our G.P called the poisons unit who confirmed that it was a corrosive toxin and advised taking him to A & E. We were there for 6 hours while they monitored him ........thankfully no harm done and I've locked the cleaning stuff away. Yesterday I was spending the afternoon with my friend and I arranged for family to be with him for most of the time I was out. My daughter had to pop out for 20 minutes and in that time my neighbour found him crying in the garden having been searching for me and saying that he couldn't find me and that someone had taken me away. I had left big notes all over the house saying where I was, who I was with and what time I would be home. He was in such a state and had had an anxiety attack, which is something new. He follows me around a lot now and is fine when I am with him. I am so sad and feel guilty that I wasn't home. I don't know what to do for the best.
 

Beate

Registered User
May 21, 2014
11,893
London
You need to get help! This can't all be on your shoulders. Get assessments from Social Services. Look into day centres and sitting service. If he gets himself into danger when left alone then he is a vulnerable adult at risk and they can't turn you away. They are the ones with duty of care, not you. Phone them tomorrow.
 

kennedy1948

Registered User
Oct 7, 2013
58
Huntingdon
You need to get help! This can't all be on your shoulders. Get assessments from Social Services. Look into day centres and sitting service. If he gets himself into danger when left alone then he is a vulnerable adult at risk and they can't turn you away. They are the ones with duty of care, not you. Phone them tomorrow.
Thank you Beate .........I will
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Feeling drained.

My husband Tony was diagnosed with vascular dementia just over a year ago although his symptoms have gone on for much longer. I look in on the forum frequently and am thankful for all the knowledge I have gained from you all. In the past 3 months the disease has progressed and we have had the most awful 10 days and I'm not coping very well. I was out for 30 minutes last week and came back to find he had drunk concentrate fabric conditioner........thinking it was lemon drink! Our G.P called the poisons unit who confirmed that it was a corrosive toxin and advised taking him to A & E. We were there for 6 hours while they monitored him ........thankfully no harm done and I've locked the cleaning stuff away. Yesterday I was spending the afternoon with my friend and I arranged for family to be with him for most of the time I was out. My daughter had to pop out for 20 minutes and in that time my neighbour found him crying in the garden having been searching for me and saying that he couldn't find me and that someone had taken me away. I had left big notes all over the house saying where I was, who I was with and what time I would be home. He was in such a state and had had an anxiety attack, which is something new. He follows me around a lot now and is fine when I am with him. I am so sad and feel guilty that I wasn't home. I don't know what to do for the best.
Please try to arrange for him to go to day care even if only a few hours a week. I left it too late and my husband will not let me leave him anywhere. I have managed to get a fews hours with Crossroads which is where someone comes to your home and stays to keep your OH safe. I feel like I have no life because even going out with him is a constant worry. He distracts me when I,m driving. He has to be watched in shops as he puts things in his pockets. He does peculiar things at the table when eating so eating out is spoilt. Talks to complete strangers like he has known them for years. The only way I can have a little bit of time to myself is when Crossroads man sits in but that time has to be spent doing the food shop and other boring things. Once your OH gets used to daycare you may get a chance at a few short breaks. Please try. If not ask about Crossroads and if you can register with them you can go out knowing he is being looked after. Good luck.
 

kennedy1948

Registered User
Oct 7, 2013
58
Huntingdon
Thank you for your advice . I spoke to Social Services today and they are coming to see me in 2 weeks. I will also look into Crossroads. Completely understand about OH talking to complete strangers as Tony does that and swears that they must be friends and insists that I know them. I feel like a prisioner in my own marriage ........that makes me sound so selfish but it's how I feel.
 

tigerqueen

Registered User
Mar 11, 2014
75
Essex
I agree with all the advice given, and please don't beat yourself up. I'm sure everyone here understands what you are going through, I certainly do. xx
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Feeling drained.

Thank you for your advice . I spoke to Social Services today and they are coming to see me in 2 weeks. I will also look into Crossroads. Completely understand about OH talking to complete strangers as Tony does that and swears that they must be friends and insists that I know them. I feel like a prisioner in my own marriage ........that makes me sound so selfish but it's how I feel.
I absolutely understand. And I don't think you are selfish. Our life as we knew it ended slowly over the last 7 years.Now whatever we do usually ends up with me feeling very embarrassed and wound up. Shopping has become so difficult that since last week I am now going to go shopping whilst crossroads sit in with him. I cannot remember when I last had the pleasure of looking round the shops in peace. Also he doesn't like to have to wait about to long so appointments like the dentist on Saturday I have to keep getting him to sit down again when he wants to walk out and I try to keep him interested in pictures in magazines. I would love to have a short break but until I find somewhere that will be happy to look after him that is not going to happen. Please try really hard to get him in day care even if only once a week. Just for the simple reason of getting him used to being without you for a few hours. I wish I had tried him much earlier when his could have perhaps have been interested in what happened in Daycare. Good luck with crossroads.x
 

Mrsbusy

Registered User
Aug 15, 2015
355
Sorry if I offend anyone here by stating the obvious, but rather than spending your really precious me time on doing the weekly shop, give on line shopping a try. You can add to your list all week, review it, and get it delivered too. The supermarkets are always offering money off for your first delivery etc and if you rotate the supermarkets and ignore the ones you have done , they email you with another discount to get you back.

Just an idea but thought it may help you to free your time to enjoy yourself once in a while.
 

patsy56

Registered User
Jan 14, 2015
839
Fife Scotland
Sorry if I offend anyone here by stating the obvious, but rather than spending your really precious me time on doing the weekly shop, give on line shopping a try. You can add to your list all week, review it, and get it delivered too. The supermarkets are always offering money off for your first delivery etc and if you rotate the supermarkets and ignore the ones you have done , they email you with another discount to get you back.

Just an idea but thought it may help you to free your time to enjoy yourself once in a while.
I would love to try that but have heard of awful stories of them sending stuff they think suitable because what you have asked for is out of stock.

But I like my "me time" to wander round the aisles browsing.......lets me think
 

Spamar

Registered User
Oct 5, 2013
7,059
Suffolk
If they do, send it back! If it's really bad, don't use that supermarket again. But with most of them you can specify exactly what you want.
Im sure you can think of somewhere nicer to chill out!
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
I would love to try that but have heard of awful stories of them sending stuff they think suitable because what you have asked for is out of stock.

But I like my "me time" to wander round the aisles browsing.......lets me think
I know what you mean....but I think the delivery services are on the whole very good.

I get all my basics delivered, especially heavy things, then if I feel like it, I can wander about choosing fresh food like fruit or fish or the like. Or even having the odd coffee :D xx
 

patsy56

Registered User
Jan 14, 2015
839
Fife Scotland
If they do, send it back! If it's really bad, don't use that supermarket again. But with most of them you can specify exactly what you want.
Im sure you can think of somewhere nicer to chill out!
Yes I suppose the park or the beach, but I like to write so like to people watch
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Mrsbusy

Sorry if I offend anyone here by stating the obvious, but rather than spending your really precious me time on doing the weekly shop, give on line shopping a try. You can add to your list all week, review it, and get it delivered too. The supermarkets are always offering money off for your first delivery etc and if you rotate the supermarkets and ignore the ones you have done , they email you with another discount to get you back.

Just an idea but thought it may help you to free your time to enjoy yourself once in a while.
Thankyou and I have done online shopping but I much prefer to go and look around. I live in a village with no shops,pubs or anything so I need to go shopping just to feel normal. Online when I have to but not every week. Thankyou anyway.x
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,948
68
Dundee
I would love to try that but have heard of awful stories of them sending stuff they think suitable because what you have asked for is out of stock.

But I like my "me time" to wander round the aisles browsing.......lets me think
They tell you when it's delivered if they have put in an alternative. You're given the option to not accept that alternative. I find the one I use very reliable.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
They tell you when it's delivered if they have put in an alternative. You're given the option to not accept that alternative. I find the one I use very reliable.
I was an online grocery virgin until about 5 years ago. I tried them all, until I decided which one to use. I've been delighted with the service I've received. If anything isn't up to scratch, they immediately refund you.
 

Grace L

Registered User
Jun 14, 2014
647
NW UK
I recommend online shopping too. I get most of my heavy shopping delivered too.
Then I can shop for extra fresh meat and veggies at my leisure.
I've had a few odd items substituted, but not many, and you can always refuse them.

I've only done it a couple of times, but when the quality of something was not as good /bad,
I send an email, saying I was not happy with X, and they have refunded me.
I didn't send a bolshy letter, just a few lines of Customer Feedback.

Please give it a go...

I had trouble shopping with my husband too. Over a couple of years we gradually stopped .
Tried a smaller 'express' supermarket , after a few months, even this was too much.
Too much stimulation, light, noise, negotiating people, aisles....

In the end, the only shopping trips we did were to have a snack, meal, coffee.
we would only go out a quieter times, not busy lunch/evening.

I used to use my Crossroads time ( 1 x month ) for doing something other than shopping.


If I had to pop out, just for 20-30 minutes, one of the ways that worked for my husband (for a little while)
was to find a programme on TV he liked, and give him a picnic lunch to eat in front of the TV
(as long as your husband is not at risk of choking/ swallowing, he should be OK)

I gave him extra food, knowing that it would take him ages to eat, and told him I would be back by the end of the programme (fingers crossed).

I left large instructions notes too, with my mobile number on and 'last number dialled' if he needed to call me.
Notes in the bathroom, kitchen, front door, next to him on the couch, in front of the TV....


I know what you mean about feeling guilty, please try and make sure you do something for you.
 

kennedy1948

Registered User
Oct 7, 2013
58
Huntingdon
Sometimes I just have to laugh

My husband Tony is having "good day" so came outside to help me this morning. I took some paving slabs round to my neighbours, unloaded them and went inside to have a cuppa with her. When I looked out of the window Tony had put the slabs back in the wheelbarrow and took them back to our garden .....:)
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Grey Lad, I don't even have to send emails if anything isn't up to scratch. The home page asks "everything OK with your last order?", and if it isn't, you click on "no", and your shopping list appears, and you tick the box(es) next to anything that wasn't suitable.

The money is refunded immediately. Their name begins and ends with "O" ;)