• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Loved ones in a Care Home.

metzie

Registered User
Aug 19, 2016
3
Thank you G

Hi Metzie, so sorry about your Mum. I can't offer help on the funding, but having taken both Mum and Dad to a care home this week (self funding), I do feel for you. It's awful isn't it, having to deal with the emotion of dropping them off at a care home whilst having to deal with all the other stressful stuff. There are lots of people in TP who I'm sure will be able to offer support and more specific advice, so keep posting. Best wishes, Gx
Thank you , My goodness , two loved ones in a home. At least they are together. Seeing mum in such circumstances breaks my heart . Only three months ago we were out looking around garden centers and eating lunch together. The cruelty of the way things happen. I thought I would be prepared . But it seems so different when it happens and the guilt of the decisions having been made. SHe was poorly in hospital but hoped she would recover . Over the last two months I have watched her deteriorate no longer the will to live , nothing to do or think about she is now lost to the institution . She loved crafts and coloring , with an instance she now does nothing but sit in a chair and stare. She is suffering delusions and visions , to frightened to return to her room , tells me there are animals in her bed. Just to heartbreaking for words alone . I am a very strong person and at most have been able to wave a magic wand to make things better. I seem to have lost that now , I to broken with the system taking over. I am now lost in paperwork , trying to save what she and my late father have worked and saved for. But this week with phone calls from social and assessments that seem fruitless and non compassionate and no chance it seems for CHC , god knows how poorly you have to be before that entitlement rears its head . I would think by research and personal activity that you need to be dying before any of this can be applied. I will look at TP , just reading articles by others has helped , I already feel less alone …..Thanks again G x
 

Georgina63

Registered User
Aug 11, 2014
955
Thank you , My goodness , two loved ones in a home. At least they are together. Seeing mum in such circumstances breaks my heart . Only three months ago we were out looking around garden centers and eating lunch together. The cruelty of the way things happen. I thought I would be prepared . But it seems so different when it happens and the guilt of the decisions having been made. SHe was poorly in hospital but hoped she would recover . Over the last two months I have watched her deteriorate no longer the will to live , nothing to do or think about she is now lost to the institution . She loved crafts and coloring , with an instance she now does nothing but sit in a chair and stare. She is suffering delusions and visions , to frightened to return to her room , tells me there are animals in her bed. Just to heartbreaking for words alone . I am a very strong person and at most have been able to wave a magic wand to make things better. I seem to have lost that now , I to broken with the system taking over. I am now lost in paperwork , trying to save what she and my late father have worked and saved for. But this week with phone calls from social and assessments that seem fruitless and non compassionate and no chance it seems for CHC , god knows how poorly you have to be before that entitlement rears its head . I would think by research and personal activity that you need to be dying before any of this can be applied. I will look at TP , just reading articles by others has helped , I already feel less alone …..Thanks again G x
Oh Metzie. So sad. Can you take a little time out to rest? You may be able to step back and see things a little more clearly? We had a couple of weeks holiday recently where M&D were in respite and although it was probably the catalyst for their permenant move, I was able to see the situation a little better on my return, and felt stronger. Hope you have plenty of support. Might you be able to get advice from age concern or Alzheimer's society? I have found both excellent. Take care. Gx
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Today l had a phone call from the Memory clinic Dr. She visited my husband in the CH, she said Ed's Alzheimers is now too far advanced to take Donpenzil, l was told by his previous Dr if he stopped taking it, he would go down hill very quickly.
Does anyone have a loved one that has stopped taking this drug, if so what were the consequences.
 

CeliaThePoet

Registered User
Dec 7, 2013
615
Buffalo, NY, USA
There are many opinions on discontinuing Donepezil. The US FDA is specific that it is intended to slow progression in early and moderate stages; no proof of effect is claimed for later stages, and longer studies have shown that the slowing effect ends after about 18 months in most (not all) people.

My mother came off it at the end of stage 5, but she doesn't have a type of dementia for which it was supposed to be effective, anyway. (MCI). I noticed no difference after it was removed. Just my experience. I believe there are several threads on TP on this question, though; try searching "discontinue donepezil".
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Thank you Celia, Ed has been on Donpenzil for 4yrs, he is late stages so maybe its pointless to continue now.
 

Primula2494

Registered User
Aug 24, 2016
1
My husband has gone into a CH

I am new to Talking Point but I feel so alone and so racked with guilt I need to talk to anyone who understands.

8weeks ago my husband went into a CH originally for respite care as I really needed a break. He was diagnosed in 2009 and I have been his primary carer whilst also trying to keep working. By the second week of respite he didn't know who I was. He talked about me to me but couldn't make the link. And now he doesn't know me from one visit to another and no longer talks about 'me.' It was the hardest thing to do leaving him in the home. I knew in my heart of hearts I would not be able to care for him again at home. So I have lost him. And I am grieving the loss of this man I love deeply. Each time I visit him it seems to get harder for me when I leave. The guilt takes over. And at night when I go to bed it hits me then. There are others on the dementia unit much worse than my husband and I feel guilty that I 'put him there.' I am sick with worry that others will judge me harshly for 'putting him there.' Like I discarded him somehow. Because this is how I feel. I feel I have abandoned him and discarded him. My husband himself seems content and settled in his own world. And I am grateful for this but I am struggling to reconcile myself to the decision I made.
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Primula,
Welcome to TP, so pleased you have found us, on this thread we have all been through what you are going through. We are all grieving for our loved ones, we are all different and deal with this situation differently. I looked after my husband for too long on my own, it was a great relief when he went into a CH, my husband used to talk about me to me, that is so hard. You have nothing to feel guilty about, you have a life and must go on as best you can, your husband will be well looked after, as you are still working it will fill some of your time. Its good that your husband has settled, do you have family support? I visit my husband 5 days a week, spending 5hrs with him, he does now know who l am. I do feel for you so much it is not easy to accept that our husbands are living apart from us. I do hope that in time you will come to terms with the way life is now. Take care, keep busy if you want to chat there will always be someone here to talk to.
 

Marylil52

Registered User
Mar 26, 2015
39
Dear Primula
You are not alone. I took my husband to a CH for respite, with the probability that it would be permanent (I began a thread here called "I can't bear to leave my husband in a care home" which had a big and wonderful response from TP friends). The pain has been appalling. It has been so bad that I've decided to bring him home next week and have a live-in carer, which is going to be terribly difficult and expensive, but I've decided to blow the money and do it for as long as we can. That may well not be long...he still knows me but that's changing fast and he puzzles over his children. The delusions are more sustained now, but he is very gentle - at the moment.

The night time, as you've found, has been the worst, but the sheer sense of shock and loss hits at all times of the day and night. It's as though D had died, but his grave, not a burial place, is the CH. My fear is that part of D has indeed died in the two weeks he has been gone, and that a stranger in his body will come home. But this is the risk - and we are so lucky that we have enough savings to do this, if only for a while.

My heart goes out to you and I don't know what words of comfort to give to you, except to say that your husband sounds safe and contented (my D had a very frightening and aggressive man next to him, whom the CH failed to prevent peeing on D's slippers, taking his things, and pounding on his door when I locked it. This was the final straw). The TP friends say the misery - our misery - will get better, and I know I myself am only putting off the inevitable separation. The thing I'm quite certain of is that you must not feel guilty. Every single one of us has a point at which we can't go on. This is nothing to do with willingness but to do with the limitations of the human body and mind, though not the spirit. You have sought professional care for your husband because professionals - carers, nurses, doctors, physiotherapists etc - can do things that neither you nor other loving carers can do. You haven't discarded him! You have found good care for him. There's all the difference in the world.

Look after yourself. With many good wishes and thoughts and fellow-feeling.
 

Georgina63

Registered User
Aug 11, 2014
955
Hi Primula
Welcome to TP and I am so very sorry to hear about your situation. Please do not give yourself a hard time. You have done what's right for your husband so that he can be well cared for, but I can only imagine how heartbreaking that must be for you. A week ago I took my mum and dad into a care home (both have AD) - one of the hardest things imaginable. Apart from a sense of relief, thoughts run through my head about whether this is the right thing for them, but the reality is they could no longer safely live at home. My mum doesn't recognise who I am, and my dad, whilst bemused by the situation would not fair well without my mum. Having to make decisions for others is an impossible task, but when thinking through the alternatives, it makes a bit more sense. You must be grieving terribly. I hope TP will help provide comfort to you, there are many with similar, seemingly unbearable challenges. From what you have described, you have made a difficult, but the right choice and should not worry about what others (who cannot possibly understand) think. Sending you hugs and wishes. Georgina xxx
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
A new lady came to stay in the care home my wife's in recently, her husband made the trip from the hospital with her and you could see the pain literally etched in his face,
he'd been there most of the day the staff told me.
I started chatting to him over dinner while I was feeding my wife and he said to me "I know I have to go home sometime, but I can't", what can you say to that?
The senior sister on duty is a very kind and understanding so I told her what he'd said on my way out and she said she'd speak to him, apparently it happens quite often she said.
After 8 months I've still not come to terms with living in an empty house, cooking for one and knowing that she's in there.
Don't get me wrong it's a nice place and the staff are lovely, my wife's always happy to see me but not bothered when I leave. Seeing all the things they do for her; changing her 3 or 4 times a day, feeding her, calming her down when she get's a bit ranty, feeding her tea and biscuits on demand to name just a few.
The home wasn't my choice, I only agreed with her going there after she'd spent 6 months in a secure assessment unit and they said taking her home with me would be "against their best advise" and potentially dangerous for her (fall risk) and because of some previous incidents of "violence" (I thought that was a bit strong a term) they said it was a bad idea so in the end I agreed.
It's not easy and I hate the situation and no matter how hard I tell me it's in her best interests I still can't convince myself that's true.
I'm one of the "7 day a week visitors club" now and I know all the others have a partner in there not a parent (no criticism intended to anyone) I think it's much harder to have a partner in a home that a parent or relative in care.
I think that's enough from me.
K
 

Wigan

Registered User
May 5, 2013
73
I personally don't think its any easier having a parent in care than a partner. It might be for some but not others. My dear mum has been in a care home for 2 years now, originally for respite which turned into permanent care as the rest of the family thought she was happier and healthier. I visit 6 days out of 7 and sometimes 7 days a week plus, I work full time. I hate her being there even though it is a very nice place and I feel we, as her children have let her down when we should be looking after her. Mum once said to my sister "don't ever put me in one of those places", how do you live with that.

I am still the one to notice when mum has something going on like a UTI, not the staff which you would think would be the case. The manager has said to me on more than one occasion that they can meet mum's expectations but not mine, this is very true.

I feel much more at ease when mum seems happy and content but am stressed to high heaven when she is unwell or unsettled and have felt like bringing her home many times. My husband is very understanding but probably gets sick of me moaning about things if I see something I'm unhappy with.
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
I am new to Talking Point but I feel so alone and so racked with guilt I need to talk to anyone who understands.

8weeks ago my husband went into a CH originally for respite care as I really needed a break. He was diagnosed in 2009 and I have been his primary carer whilst also trying to keep working. By the second week of respite he didn't know who I was. He talked about me to me but couldn't make the link. And now he doesn't know me from one visit to another and no longer talks about 'me.' It was the hardest thing to do leaving him in the home. I knew in my heart of hearts I would not be able to care for him again at home. So I have lost him. And I am grieving the loss of this man I love deeply. Each time I visit him it seems to get harder for me when I leave. The guilt takes over. And at night when I go to bed it hits me then. There are others on the dementia unit much worse than my husband and I feel guilty that I 'put him there.' I am sick with worry that others will judge me harshly for 'putting him there.' Like I discarded him somehow. Because this is how I feel. I feel I have abandoned him and discarded him. My husband himself seems content and settled in his own world. And I am grateful for this but I am struggling to reconcile myself to the decision I made.
Dear Primula,

Yes I understand. My husband is now in a Nursing Home. In general people don't seem to understand this illness. There are other illnesses that need specialised care and family are not asked why person needs to be in hospital!! It is almost impossible to deal with the heartbreak but we will find our way through this darkness. My husband thinks he never got married!! This idea could change. Everyday is different.

You have NOT abandoned him. He is content and settled in his world, like my husband. You made the most amazing loving decision for him. I know that I have too.

Nobody has any right to judge you.

I can totally identify with all your feelings. The loneliness and heartache. I managed to get rid of guilt over the past weeks as my husband is happy and content. Try to kick that guilt out of your like. Not at all easy but please keep trying.

I hope you have sensible people around you who can give you support and who can listen to you. Active listening seems to be an unused skill but you will find people who use it.

I wish you every blessing. I have sent a friendship request to you. You may not want to accept it at present and that is perfectly ok.

I will watch out for your posts and will reply to them.

Sincerely,

Aisling ( Ireland)
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
I totally agree with you Kevin, my husbands mother had Alzheimers, l loved her as much as my own mother, my father-in-law could no longer look after her, so she went into a CH, now my husband is in a CH with the same awful disease, l could no longer look after him, as l had carer's breakdown, there is no doubt in my mind that having my husband in a CH is so much more harder to deal with than my M.I.L the love you have for a husband and wife or partner is a different kind of love.
 

Geof

Registered User
Jun 1, 2016
51
Lancashire
Confused

I must admit to being confused at the moment.

It's been three weeks since Anne's consultant and the CH staff advised me to limit my visits to just twice a week because she seemed to be having trouble settling in and I found the visits very emotional. Her meds were increased at the same time. It seems to have helped Anne because she is much more settled now, no longer talks of coming home and has made some friends with other residents and become more involved in the activities.
The problem is that during my last two visits, Anne has started to hear her 'voices' again and today I had to cut the visit short because she started to become agitated and was convinced that there were people outside waiting to do me harm. The staff say that she is quite settled when I am not there and doesn't talk about her voices to anybody but me. She never mentions them if any of the staff are present. Surely they can't think that I am making it up? It really upsets me to think that I might be the trigger for her distress.
 

CeliaThePoet

Registered User
Dec 7, 2013
615
Buffalo, NY, USA
Geof, how very upsetting. I wish I knew how to help. I did find this overview of facts related to hearing voices. I am not sure if it will reassure you, but I tend to go for factual information when I am worried. it does state, "Voices often reflect important aspects of the hearer’s emotional state – emotions that are often unexpressed by the hearer." Perhaps this could help inform your approach, and maybe someone with more mental health background could suggest ways to address these emotions in a constructive way.

It may be that your presence reminds her of a time she felt out of control (before care), and that that association will diminish with time.
 

Wigan

Registered User
May 5, 2013
73
Geof, it could be because she doesn't know who to tell when you're not there. My mum often tells me she has headache/backache/sore throat etc. but yet the staff say she never mentions any aches and pains to them.

The staff don't spend a lot of time sitting with our loved ones like we do, so they are not going to learn as much of what is going on as we can.

I'm just so glad mum tells me as I have insisted on the GP on many occasions to get mum checked out based on what she tells me plus, I think we know our loved ones better than anyone else.

I wouldn't feel guilty that your visits are the cause of Anne hearing voices again and if she is telling you that, then the staff need to investigate and find out what is causing it again.

Good luck and do what you feel is best for you as well as Anne.
 

Geof

Registered User
Jun 1, 2016
51
Lancashire
Geof, how very upsetting. I wish I knew how to help. I did find this overview of facts related to hearing voices. I am not sure if it will reassure you, but I tend to go for factual information when I am worried. it does state, "Voices often reflect important aspects of the hearer’s emotional state – emotions that are often unexpressed by the hearer." Perhaps this could help inform your approach, and maybe someone with more mental health background could suggest ways to address these emotions in a constructive way.

It may be that your presence reminds her of a time she felt out of control (before care), and that that association will diminish with time.
Celia, I'm sure it wasn't your intention to offend but you certainly managed to do so!
Did you actually read through those so called facts in their entirety? Essential fact 10 implies that a large majority of people hearing voices suffered abuse during marriage from their partner. It's a great pity that there are so many quack websites out there but a greater pity that so many people take everything they read on the net as fact!
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Geof, l have been worried about you as you haven't posted how Anne is, its sounds like she has settled well, l am sure she is fine, have you taken Skye in to see her, l don't think you are causing Anne to hear the voices, she probably still hears them when you are not there. Maybe as time goes on she will not hear them, my husband is always hearing voices, and thinks people are in his room stealing his belongings, its just part of the illness. Try not to worry, and visit whenever you want to. I miss my husband when l am not with him, that is only normal when you have had a long and happy marriage.
Take care of yourself Geof.
 

Geof

Registered User
Jun 1, 2016
51
Lancashire
Geof, it could be because she doesn't know who to tell when you're not there. My mum often tells me she has headache/backache/sore throat etc. but yet the staff say she never mentions any aches and pains to them.

The staff don't spend a lot of time sitting with our loved ones like we do, so they are not going to learn as much of what is going on as we can.

I'm just so glad mum tells me as I have insisted on the GP on many occasions to get mum checked out based on what she tells me plus, I think we know our loved ones better than anyone else.

I wouldn't feel guilty that your visits are the cause of Anne hearing voices again and if she is telling you that, then the staff need to investigate and find out what is causing it again.

Good luck and do what you feel is best for you as well as Anne.
Thanks for your helpful reply, Wigan.
Anne has never been one to confide in strangers and it could well be that she only feels able to express her true feelings to me. I have told the CH staff and it's possible that her meds need adjusting again. She will be having a review in another week.
 

Geof

Registered User
Jun 1, 2016
51
Lancashire
Hello Geof, l have been worried about you as you haven't posted how Anne is, its sounds like she has settled well, l am sure she is fine, have you taken Skye in to see her, l don't think you are causing Anne to hear the voices, she probably still hears them when you are not there. Maybe as time goes on she will not hear them, my husband is always hearing voices, and thinks people are in his room stealing his belongings, its just part of the illness. Try not to worry, and visit whenever you want to. I miss my husband when l am not with him, that is only normal when you have had a long and happy marriage.
Take care of yourself Geof.
Hi pam, thanks for your concern. I must admit that I've been down a bit lately and haven't posted. It's great that Anne has settled more and, as I said to Wigan, I hope that a review of her meds will get the voices back under control again. I've had to stop taking Skye to visit because Anne became too upset after he left. She still asks after him but seeing him in the flesh seems to reawaken all her fears for his safety (as seeing me also awakens her fears for mine).
On a different note, I've finally plucked up courage to take a short break away with Skye early next month. I've actually booked four nights away and we are going to walk part of Hadrian's Wall together. I must say I'm rather terrified of going away after all this time but it's now or never :eek:

I hope things are going ok for you and Ed now pam.
 

Staff online

Forum statistics

Threads
114,321
Messages
1,672,459
Members
65,405
Latest member
Alan Squires