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Rapid deterioration

crazyone

Registered User
Dec 14, 2017
45
I haven't posted for quite some time, but I'm sitting here in tears, and don't know who else to turn to. After caring for my Dad for 8 years, he had to go in to a care home last November. He had Alzheimers, was doubly incontinent, was in a wheelchair, had poor eyesight, and hearing, and had fallen a few times. He never did settle there, but we visited every day, and spent an hour or two with him. Lock down has taken a dramatic toll on him. The home did garden visits for a while, and although he had gone downhill and was more confused, he wasn't too bad, but then the visits stopped. I Skyped once a week, which was all we were allowed, and it was difficult, as he couldn't see or hear, and it was pot luck on who was helping him, as to how good they were. We then had two weeks where we were allowed to take him out. The first went well, but on the second he was sent out in an indoor wheelchair (not his own), he looked unwashed, he had a summer jacket on, no teeth (which upset him), his hearing aid battery compartment was open, and the batteries were flat, and he was shouting and confused. I have just had another Skype with him, and he spent the entire time calling our names, saying I don't know where to look for you and shouting help me. It's breaking my heart. I want him out of there and with me, but I have no idea how I could cope. I'm on my own, and my sister has terminal cancer, so I am doing what I can for her. I feel so torn and helpless
 
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lemonbalm

Registered User
May 21, 2018
881
Oh I'm sorry to read your post. First of all, have you asked staff to check for urine infection or other signs of other illness? It's best to check that there are no physical causes for the agitated behaviour. I would also ask for an urgent review of your Dad's medication. It's very distressing to see our parent in this state but hopefully things can be improved with a medication tweak.

Do you think your Dad's appearance on the day your saw him could be a one off? How was your Dad's appearance today? Apart from the behaviour, which I know is terrible to deal with, did he look well cared for?
 

crazyone

Registered User
Dec 14, 2017
45
Thanks for your reply lemonbalm. The residents are checked regularly for urine infections, and I know he has been calling for help for a few weeks. I'm sure it's the fact that we haven't been able to visit. He is aware that he hasn't seen us, but can't understand why, and he has no idea where he is. He has lost a lot of weight in the past few months. They put him on soft food the day he went in, as he choked on his first meal. He has now lost the ability to feed himself, so is being fed. The home has a very good reputation, but they are always short staffed. We lodged a complaint and the person who sent him out like that was put on a supervisory. I feel like just ramraiding my way in, and saying **** the Covid regulations, I'm spending time with my Dad.
 

lemonbalm

Registered User
May 21, 2018
881
I'm sorry things are so hard. I would definitely ask about an urgent med's review. My mum has had bad patches where she will literally scream. It's appalling. Changes in medication have really helped along the way but sometimes I've had to push for one. It's definitely worth a try to see if it would help your Dad be calm. I'm not talking about heaps of massive sedatives, just something to help with the anxiety. A low dose Mirtazapine can be very effective. Sometimes even regular Paracetamol can make a difference.

I understand how awful this feels. It's not your fault!!!!!
 

crazyone

Registered User
Dec 14, 2017
45
I'm sorry things are so hard. I would definitely ask about an urgent med's review. My mum has had bad patches where she will literally scream. It's appalling. Changes in medication have really helped along the way but sometimes I've had to push for one. It's definitely worth a try to see if it would help your Dad be calm. I'm not talking about heaps of massive sedatives, just something to help with the anxiety. A low dose Mirtazapine can be very effective. Sometimes even regular Paracetamol can make a difference.

I understand how awful this feels. It's not your fault!!!!!
Thanks again - I just can't stop crying. Dad and I were always close, and he is such a quiet, gentle man. I wish I could think of a way to have him here, but he needs two people to do most things for him now, as he can't weight bear at all, and he needs 24 hour care. He has been on donepezil for about 6 years now, and it did seem to keep the progress to a minimum. Really the only mental problem was his memory, but now he seems so agitated. I will ask the care home to put him on Wednesdays doctors list. I feel at breaking point between him, my sister, Dad's house sale taking forever, and being on my own. So sorry to spout like this - I can't burden my sister, and my daughter suffers from depression.
 

lemonbalm

Registered User
May 21, 2018
881
You carry on spouting all you like on here! That's what it's all about. You couldn't possibly look after your Dad at home now. I don't know if it will be of any comfort but my mum was agitated and looking for me even when I was visiting her every afternoon.

I will keep my fingers crossed that a medication tweak can really help your Dad - and you! Try to be kind to yourself @crazyone . Keep posting and let us know how things are going, for support and advice or just a listening and understanding ear or two.
 

canary

Registered User
Feb 25, 2014
13,946
South coast
My mum was on donepezil which gave her two years of good quality of life, but it doent stop the dementia progressing and she suddenly had rapid deterioration. I was told that this can often happen. It does sound as though your dads dementia is now advanced.
 

crazyone

Registered User
Dec 14, 2017
45
Thank you both for your replies. I've emailed the deputy manager (the manager there left suddenly), and asked for an urgent medication review. He needs us there with him to hold his hand, and calm him. How can life be so cruel?
 

Just me

Registered User
Nov 17, 2013
494
I’m so sorry to hear what’s happening @crazyone , I know how hard it is to address issues when you just have phone contract. At least the care home take action when you complain but worrying if they are short staffed.
I had a phone call with mum the other day and it was heartbreaking hearing her saying she was scared and shouting for help.
I hope he is included in the doctors list and he can be given something for his anxiety or his meds tweaked.
 

Sam51

Registered User
Oct 23, 2020
22
So sad to hear about your dad and sister it must be so hard ,sending a big hug to you and your family x
 

crazyone

Registered User
Dec 14, 2017
45
To be honest I've lost a lot of faith in the care home. It is part of a big group, and the management seem to put profit before care. There has been a massive turn over of staff lately, we have not been told why the manager left - just an email on the day he went. They have dementia patients on one and a half floors, and elderly residents who choose to be there on 2 and a half. Things seem to be geared up to the elderly residents with entertainment and parties, but not the one to one that the dementia residents need. We looked round quite a few homes, and whittled it down to two. We chose this one because the room has a big window, and is bright and spacious, and we knew Dad would spend most of his time there, as he is not a socialiser. They also have a mini bus, so he was going out once a fortnight or so before lockdown.
 

Lone Wolf

Registered User
Sep 20, 2020
57
To be honest I've lost a lot of faith in the care home. It is part of a big group, and the management seem to put profit before care. There has been a massive turn over of staff lately, we have not been told why the manager left - just an email on the day he went. They have dementia patients on one and a half floors, and elderly residents who choose to be there on 2 and a half. Things seem to be geared up to the elderly residents with entertainment and parties, but not the one to one that the dementia residents need. We looked round quite a few homes, and whittled it down to two. We chose this one because the room has a big window, and is bright and spacious, and we knew Dad would spend most of his time there, as he is not a socialiser. They also have a mini bus, so he was going out once a fortnight or so before lockdown.
Maybe you could make a special request to the deputy manager to visit Dad. The latest version of the guidelines include the following pronouncements.

In light of their obligations to residents’ rights and wellbeing, it may be appropriate or necessary for providers to apply different rules for different residents

The factors relevant to decisions about particular individuals or groups of residents include the following, in addition to those factors above relating to a care home’s general visiting policy:


the benefits to a person’s wellbeing by having a particular visitor or visitors



the extent of the harm that will be experienced by the resident from a lack of visitation



In making these decisions, the care provider should actively involve the resident, their relatives or friends




The guidelines are certainly flexible enough to allow visitors on an individualised basis. I suggest that you emphasise to the deputy manager just how worried you are about Dad's wellbeing and his care, including staff shortages and the resignation of the manager. At a very minmum, their must be some area of the home where they could allow you some sort of visit.


I would also phone every day to speak to the duty nurse or senior carer responsible for Dad for that day for feedback and possibly a few words with Dad. And keep doing this until you form some sort of idea of the standard of care.


Do you have LPA Health & Welfare? If so, you are legally empowered to ask for a copy of Dad's care plan and daily care records. Even if you don't have the LPA, I would ask anyway, on the grounds that you know Dad better than anyone and are deeply concerned about his wellbeing. At the very least, ask for his monthly weigh-ins to get an indicator of what is happening.


It is important to get a feel for whether Dad's care is acceptable or if the concerns are related to his health conditions, before considering other options.


I really feel for you because the visitor lockdown has handicapped relatives enormously when the one thing that still motivates us above all else is to do the absolute very best we can for that loved one who we had to succomb to a care home against all instincts, wishes and promises.


This evening I had reason to phone an Admiral Nurse, who I found to be very understanding, reassuring and helpful. Here are the details.


Looking for information or advice about dementia or Alzheimer’s? Call our Dementia Helpline for free on 0800 888 6678 for support from our dementia specialist Admiral Nurses. The Helpline is open from 9am to 9pm Monday to Friday and 9am to 5pm on Saturday to Sunday.
 

Lyn13

Registered User
Jan 20, 2019
13
Just thought I would come at this from a different direction while you sort everything else out. How about sending into Dad something that will give him comfort. Is there a cushion or a soft toy or something that could bring about a sense of connection to you that he could hold? Likewise is there something that you have that brings you a feeling of connection to your Dad. I thinks it is important to have it both ways as looking after yourself at this moment is so important.
 

Buckles

Registered User
Oct 4, 2020
13
This breaks my heart. I have to ask have you considered live in care, perhaps with the proceeds of your dads house sale? Most companies suggest you have a room for the carer, single bed and TV. So you would need 2 spare rooms, one for your dad and one for the carer. The costs are massive, but then so are care homes and yes, you might run out of money sooner this way, but the care home will take it until its gone anyway.... so if it improves both of your qualities of life, then maybe it doesnt matter?

It will be hard living with a stranger, and youre dad will prefer to have you do the cares but it means having someone in the house to support(?) and youre in the bubble!