Loved ones in a Care Home.

Kevinl

Registered User
Aug 24, 2013
6,064
0
Salford
Ok me again saying something that may be unpopular and not for the first time.
You guys all have too much respect for the white/blue/whatever colour uniforms, if it feels wrong then it is wrong no matter how qualified the person telling you may be.
I followed the ambulance when my wife was taken from hospital to a secure unit so I could be there when she arrived, about 2 in the morning after she'd been sectioned and all the paperwork was done and stayed for a couple of hours.
Next day 2pm (start of visiting time) I arrived and they did look a bit "concerned" let's say, she was sat on the floor in isolation (but supervised) eating pizza and chips with her hands and snarling like an animal, 10 minutes later I had her sat in a chair and being fed, half an hour we ventured into the day room.
After 6 months on the secure unit she was moved to EMI nursing, they (prearranged) called me when she left the secure unit so I could be at the care home when she arrived there and settle her in to her new home.
I can't believe this "don't visit" stuff, I think it shows a total lack of respect for the person who should be the most involved, it's the exact opposite of my experience.
The nine days Rosebay mentions, by that time I'd been interviewed (in an informal way) by half a dozen people; senior ward staff, OT, psychologist and all the rest and had the "newbie" chats with most of the carers.
Sorry you guys but you respect the system too much and in this case it seems like a pretty poor system.
Advise is specific not generic and the not visiting isn't working for Rosebay or her husband in this case.
I'd go with my heart telling me what was right not my head telling me anyone in a uniform knows what's better for my wife than me, after over 40 years.
K
 

Rosebay

Registered User
Jul 27, 2014
165
0
Oxfordshire
Thanks Kevinl you are so right the not visiting is not working for me. In fact if he had been in our local hospital and not two bus rides and two train rides away I would have just gone. I am afraid I am not strong in standing up for myself as i have always had my husband making the decisions. I regret to say I am a follower not a leader in personality so I find I get intimidated by Authorities. I need to toughen up. His family are coming up from the south this weekend and they have too rang the hospital and been told the same as me no visitors at present. They have not found the right medication to calm him yet. They are at present doing lots of blood tests and urine tests to see if the can find an underlying cause for the suddenness of his decline. What happens after the twenty eight days if there is no improvement. Today I am going to find the hospital social worker who had been assigned to him to see if she can help me to get him moved here. I need to see him even if I don't approach him or touch him. Apparently my local social services have now closed their file. It's all part of Cheshire so I don't understand why


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Bugsbunny4

Registered User
Nov 6, 2015
80
0
Yorkshire
Thank you for hugs. My husband is not settling at all and he has now become incontinent he was not when he was home with me. How can so much change in just nine days. He is not responding to medication yet but the staff sister did say there was a slight improvement today. They have said it may be a week or so before he is settled and well enough to see me BUT I can ring any time. He is not communicating he has not said anything that makes sense so far except for Stop leave me alone when they were trying to wash him.
It feels to me that he is giving up fighting this horrible disease because I am not there with him helping him. I am trying to track down the hospital social worker who has been assigned to him to make sure she is chasing a bed for him in the secure unit near to our house. When he is moved I feel like hammering on the door until they let me in but I wont of course. I guess I better try to sleep now but I have had months of so many disturbed nights I just can't can't switch off and sleep oh well let's see what tomorrow brings. Thank you all for helping me x


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Hello Rosebay,
I have been reading the posts about the difficulties you are going through at the moment. Your story is almost a mirror image of mine, respite intended for a week, big behaviour change there so sectioned. In hospital for nearly three months so moved on to section 3. Placed in a care home November, very unsettled at first but then settled. About 5 weeks ago his wandering at night became a problem and there has been three safeguarding incidents involving other residents. At the minute he is under 1/2 hourly surveillance and all his behaviours are being logged. He has been put on a different medication over the last 10 days and although quieter and less agitated he still has moments which are completely unpredictable. I think the CH want him back in hospital but the CPN and doctor don't think this is the best way forward for my husband.
There have been reviews, meetings, discussions etc and I am in a whirl of stress.
So I can understand how much worse it is at the minute for you as you are not able to see your husband. At least I can visit, although I dread hearing what else he's done. Reading his behaviour log is very worrying. I don't know how it will all end but I have to trust in those trying their best to help a very poorly man. In one of your posts you said you wish you hadn't put your husband into respite and this is a thought that haunts me. Try to enjoy the things you do for yourself, take time out to meet friends. You need to stay well for your husbands sake.
I am so sorry you are having to go through all this but it will be sorted out I am sure.
"Have faith in what will be"
Lots of love
 

Rosebay

Registered User
Jul 27, 2014
165
0
Oxfordshire
I am so pleased for all the replies Thank you. I have no one that understands like you all do Its only when you are living this nightmare that you can truly appreciate how hard it is. I wish I was stronger I am trying to be. I am going to hold my ground when I actually find the right person to talk to about getting him moved back near me.


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pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Well done Rosebay, you are sounding more positive, hope you soon get your husband moved back near to you.
 

Rosebay

Registered User
Jul 27, 2014
165
0
Oxfordshire
I managed to actually talk to a really helpful and lovely lady yesterday who has been assigned to my husband from the mental health team. Whilst my husband is at risk to himself and others it is normal practice that the ward request no visitors for safety and distress to relatives reasons. Also whilst he is at this stage even if a bed did become available locally he would not be well enough to move.
My husband was put on a drip yesterday but he is not eating but he was calmer for awhile and asked to be taken to his home in Hatfield where he use to live with his mum and dad. This is the first sign I have had of my normal husband coming back to me as he was always asking to go home.
She advised me that my husband would need 24/7 care in the future and when the time comes I should be considering care homes that have a trained mental health nurse there that can administer medication as and when required. My husband would not be suitable for a dementia care home. I didn't know there were two types
I have decided I can't live here in this house without being with him Just too many memories. I am without any family support here and I do need help to get through this so as soon as power of attorney is through I am moving south as soon as possible. This move is giving be something good to focus on. Thanks again to everyone who listened and replied.
X



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Rosebay

Registered User
Jul 27, 2014
165
0
Oxfordshire
Just looked on line and would you believe it there are two dementia nursing homes within walking distance where I would like to move to. Do you think this is fate !!!! In my heart though I do really wish there was just some way we could be together again in our own home it's just not fair x


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Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
It's so awful that we cant turn the clock back when Dementia takes over. Rosebay, my heart bleeds for you. And for all of us who are left behind struggling with a life that's changing, and we're having to find a way forward.

Planning to find your husband a place where he can be well looked after and where you can visit him will be something positive to concentrate on, while the medical team where he is try hard to find the right medicine to help him....

I understand how you feel about your home, mine's full of happy memories and I miss him so, but in my case it makes me want to hold on. I think perhaps you are stronger than you think. Sending a hug....
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
I thought l would share this special moment with you all. Yesterday after l had washed and changed my husband, he put his arms around me and kissed me, he can hardly pur two words together, he said to me
I am sorry l was nasty to you, bought tears to my eye's, l cannot believe that he said that. ☺
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
I thought l would share this special moment with you all. Yesterday after l had washed and changed my husband, he put his arms around me and kissed me, he can hardly pur two words together, he said to me
I am sorry l was nasty to you, bought tears to my eye's, l cannot believe that he said that. ☺

That is just beautiful, pamann.
These 'windows' are so special, and we wonder why they happen so rarely?
They are proof that beneath the mists and fogs of dementia, the true person is still there.
 

tigerlady

Registered User
Nov 29, 2015
427
0
I thought l would share this special moment with you all. Yesterday after l had washed and changed my husband, he put his arms around me and kissed me, he can hardly pur two words together, he said to me
I am sorry l was nasty to you, bought tears to my eye's, l cannot believe that he said that. ☺

How lovely Pam. Those moments are so special. I had a similar moment with my husband the other day. I was holding a chocolate bar for him to bite so he didnt get chocolate over his hands and he took hold of my wrist and kissed it so tenderly! We must cherish those special moments that remind us that our loved one is still there
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
Pamann, that's so lovely. We can never assume the dear person we knew has gone; as sleepless said, they are still there, in the mists.

Maybe yesterday was an extra special day....After weeks of seeming not to like me and blaming me for not rescuing him from his predicament, yesterday Rob said nothing would make him happier than if we could spend the rest of our lives together, please. He supposed that might be about thirty years...I said we'd be about a hundred and seven, and we laughed about it together. We'd been sitting in the garden, and I'd been chattering about which plants and bushes would make it even nicer....he said he was pleased that we owned this place now.
 

Florence.

Registered User
Nov 7, 2012
116
0
I thought l would share this special moment with you all. Yesterday after l had washed and changed my husband, he put his arms around me and kissed me, he can hardly pur two words together, he said to me
I am sorry l was nasty to you, bought tears to my eye's, l cannot believe that he said that. ☺

That made me feel all warm reading that pamann. How lovely. You're in his heart, always will be.x
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Hello Florence, J, Anne, We all have very difficult times, how lovely when we get these special moments, makes all our caring worthwhile, we have to make the most of what we have now, we are never going to get back what we have lost.
How lucky we are to have each other to talk too.
 

Rosebay

Registered User
Jul 27, 2014
165
0
Oxfordshire
Had a bit of better news yesterday my husband is being moved out of the one to one nursing section of the secure unit to a room further down the corridor into the men's section. His condition is becoming more manageable apparently but I have been told he still has a long way to go. He is drinking so no longer needs a drip and has started to eat a little. He is not communicating and the staff are getting to know him by his facial expressions and body language he is up out of bed now which is good news but he is wandering .

I am trying to keep positive. X


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Tcake2

Registered User
May 29, 2016
22
0
Hi Rosebay, I'm glad there is better news about your husband and that his condition has improved. Sending you as many positive vibes as I can muster.
Today has been rough. No easy answers. Nothing we can do to make things right but we just keep doing the best we can. Hopefully you will soon have him nearer home (wherever that home is). Take care. Thinking of you x
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Hello Rosebay,
Pleased to hear there is some improvement, it takes a while to get the medication right, l do hope you will get to see him soon.