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What do I Do Now

Pityaker

Registered User
Jan 22, 2017
6
Durham
It is 3 years since I posted anything during that time my wife has gradually got worse I think she is now classed as middle to late stages?. Since this lockdown I have become what can be only described as suicidal, when I call the doctors or her specialist team all I get is tea (virtual) and sympathy and passed from pillar to post like a bit of unwanted rubbish. Last night it got worse my wife woke in the middle of the night did not recognise me ( its happened before) and refused to get in bed with a stranger (not happened before) which led to hysteria I called the crisis team which rang and rang with not even an answer machine. I just do not know who to turn to for help I know this pandemic is serious but surly the world does not stop is there any help any where (even rang Samaritans and that just rang out). Just do not know what to do.
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,006
69
Dundee
I’m so sorry to read of how bad things are for your just now.

Please give Samaritans another ring today. I’d imagine they must be extremely busy due to the Covid-19 situation but I do think you need to speak to someone there. Also phone the Crisis team again and contact your wife’s GP to explain how bad the situation is.

Here’s the Samaritans contact details again -



Please keep posting here too,
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,839
Nottinghamshire
I hope you manage to get through to someone today @Pityaker .

Perhaps it would help to talk to someone from Dementia Connect who may be able to help you find a way forward.

 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,929
Kent
It happened to me @Pityaker. My husband would not get into bed with me. He told me he was a married man.

It only happened once so please don`t give up hope yet.

This doesn`t mean you don`t need more help and support than you are getting now.

If you continue to be unable to get through to the Samaritans, please email them ;

jo@samaritans.org

you are promised a reply within 24 hours.
 

canary

Registered User
Feb 25, 2014
13,607
South coast
TBH, Ive not found the Samaritians very helpful (even when I could get through to them), but perhaps I was unlucky.

I had a breakdown at the back end of last year . I found my GP most helpful - she started me on antidepressants, recommended OH went into emergency respite and referred OH to Social Services and me to Carers Support, although I dont know if Carers Support are available in your area.

Please, please contact your GP and be very honest and open about your problems. You definitely need more help.
 

LizzieM

Registered User
May 6, 2019
54
Contact the Admiral Nurses - they are there for you as the Carer. So thankful for support I have had trying to come to terms with PWD changes, challenges of caring, feelings of despair, burn out and so on. They can help navigate The System and apply pressure to get stuff done too. You can tell them anything - I do...
Google for your local contact first - if there is no immediate support in your area then there is a national number that will come up.
Sending you strength.
 

lemonbalm

Registered User
May 21, 2018
669
I hope you can get some support today and that things are feeling better this morning. Let us know how you get on.
 

White Rose

Registered User
Nov 4, 2018
679
Hi @Pityaker, particularly difficult at this time but there are care agencies still working, can you get someone to come in and give you a break, even a couple of hours a week is such a help, it is essential that we have a break sometimes. It's no wonder you are feeling suicidal being a carer 24/7/365 is too much for anyone. Try to remind yourself that this is not going to be forever, the lockdown will end and your wife's situation will eventually change, one way or another, maybe you'll eventually place her in a care home.

My partner is stage 6 of the 7 stages of dementia, it's become extremely difficult but I've found after repeatedly trying that I have finally found an understanding and helpful GP who is going to put us on the list for when the memory nurse is back to normal working pattern (although it seems like you may be on their radar if your wife has a specialist team). Also I've found support for carers via the council, social services. Support seems to be hit and miss depending on where you live but, try googling something like 'carers assessment' and your county and see what comes up.
It helps enormously just to have someone listen to you and to be able to talk about the problems you are facing.

Re the hysteria, is it possible to distract her, soothing music, food maybe. My partner has angry outbursts and swearing, I just have to try and remain calm and offer him ice cream (his favourite) or put his music on. Sleep is so important in our ability to deal with this. I try to give him a walk every day, keeping him active and not letting him sleep too much in the daytime so he sleeps better at night. I started reading a book called 'Contented Dementia', I don't think the Alzheimer's Society is keen on it but it has a few useful ideas.
But all our PWDs are different so it's just trying to find something that works for them to keep them calm.

I hope your day has been better.
 

Palerider

Registered User
Aug 9, 2015
1,995
North West
Hi @Pityaker I'm so sorry for how your are feeling at the moment, its a dark place to be and hard getting help, just to add Mind has a helpline that can direct you to getting help, heres the link to their helpline, you can also email or text message:

 

Pityaker

Registered User
Jan 22, 2017
6
Durham
It is 3 years since I posted anything during that time my wife has gradually got worse I think she is now classed as middle to late stages?. Since this lockdown I have become what can be only described as suicidal, when I call the doctors or her specialist team all I get is tea (virtual) and sympathy and passed from pillar to post like a bit of unwanted rubbish. Last night it got worse my wife woke in the middle of the night did not recognise me ( its happened before) and refused to get in bed with a stranger (not happened before) which led to hysteria I called the crisis team which rang and rang with not even an answer machine. I just do not know who to turn to for help I know this pandemic is serious but surly the world does not stop is there any help any where (even rang Samaritans and that just rang out). Just do not know what to do.
.
Thank you for all your reply's I did find them helpful. I did eventually get in touch with our doctor who has prescribed Haloperidol (has anyone had experience using this drug) The emergency social services are arranging respite care in a nursing home will update when I have further information
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,006
69
Dundee
Thank you for all your reply's I did find them helpful. I did eventually get in touch with our doctor who has prescribed Haloperidol (has anyone had experience using this drug) The emergency social services are arranging respite care in a nursing home will update when I have further information
I’m afraid I have no experience of that drug but I’m so very glad that you are going to get some help and support @Pityaker. Yes, please keep us updated - everyone is here to support you.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,867
leicester
@Pityaker I’m glad you are being listened too finally.
my husband was on Haloperidol it really helped him, I hope it will help your wife as well.
please keep posting for support from your peers here on DTP
 

Pityaker

Registered User
Jan 22, 2017
6
Durham
Thank you for all your reply's I did find them helpful. I did eventually get in touch with our doctor who has prescribed Haloperidol (has anyone had experience using this drug) The emergency social services are arranging respite care in a nursing home will update when I have further information
 

Pityaker

Registered User
Jan 22, 2017
6
Durham
Hi Every body just to keep you updated my wife was admitted to a nursing home on Friday 22nd cannot pretend that it was heart-breaking to leave her and every minute since I keep thinking was it the right thing to do, I feel guilty and that I have let her down. Rang the home on the Saturday and spoke to my wife but it made it worse as she said she was frightened and wanted to come home. Have rang the home a few times since and spoke to the staff who said that she was agitated but was settling in but kept asking where I was. This is tearing me apart its supposed to be respite but I feel worse now than before is this normal? and should I speak to my wife rather than the staff? is my feelings normal?
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,839
Nottinghamshire
Hi @Pityaker I can imagine how distressing this is for you and your wife - probably more for you. Take advice from the care staff about speaking to your wife on the phone. If she’s calm it might be nice but if she’s agitated it might upset you both. Hopefully she will settle soon and come home to you calmer after the respite.

Your feelings are normal and you haven’t let your wife down. You have been pro-active and got the help you both need. Many people here have used occasional respite which has enabled them to keep their loved ones home longer as they’ve been able to re-charge their batteries to carry on. Try to make the most of your break from caring. Your wife will be well looked after.
 

lemonbalm

Registered User
May 21, 2018
669
Hello @Pityaker. If it distresses you and your wife to speak on the 'phone, send her some flowers or a card so that she knows you are thinking of her. You have done the right thing, even if it doesn't feel like it right now. Part of coping is knowing when to accept help. Be kind to yourself.