My husband has early onset AD and was diagnosed at 61. He is now in care and does not know us but physically he is reasonably fit. I look at the others in the home who can hardly move and wonder how much longer we will all have to suffer with him. We have a new grandchild and he has no idea who this baby is. It is heart breaking.
Torn in two with guilt
- Thread starter snoggy1one
- Start date
Hi,
Firstly, you poor thing. I have such empathy for you and would like to say it sounds as though you are amazing and doing a wonderful job holding it all together.
From reading about the hard time you are having and the replies from others doing their best to cope with their parents, is to know that, sadly, the situation, you, and I and others are in is so common. It can feel better to know that your situation with your mother is not unusual and there are lots of us in very similar situations.
My mother (identical behavioural patterns to your mother), is still living in the old family home. A massive house, where she is incredibly, lonely, isolated and frequently frightened. I have investigated several care homes that may be suitable for her but much of the time, she does not seem 'bad enough' (just yet) to need residential care. She just wants me. All the time.
She alternates between loving, fun, sweet and gentle company and then can behave in an aggressive, demanding, unreasonable and very upsetting manner, especially if I am not able to drop things and visit her when she demands. In a similar situation to yours, she resents the time that I am with me children and at my home caring for my own family and has made several 'hints' that the best thing for her would be to live in a little house next to me ... I realize this would not solve her problems as the illness will continue to get worse and I would end up with her demands increasing and taking over my life. Therefore, I think I have a choice. It is either to live my life with my husband, two young children and care for her as much as I can with visits, phone calls, arranging carers to visit her, take her to my dad (who has PD and is in a nursing home) - or, give up on my life and become her carer.
I have not come to this decision lightly. It may even appear harsh to you reading it. But ultimately it is about my sanity and my duty to my children and husband. I cannot be everything to all people and I believe I am entitled to my life - infact, my mother prior to her illness, was a fiercely independent woman who would have insisted on my having my own life.
I still have terrible anxiety and guilt about not being able to 'fix' her problems and make her happy, but I have spoken to medical staff and mental health nurses and even our appointed social worker for the past two years in order to get to this point. Speaking to professionals can be helpful as they have no emotion or connection and are able to be very objective and are also not in denial about the mental health condition (for example, I constantly refuse to accept how bad my mum is and am delusional in thinking she may even get better!).
Every day is a torment between doing what she would want me to do and doing what my head tells me is the sensible and right thing to do. I care for her greatly and we are incredibly close and have had a very loving and caring relationship for all my adult life. I am trying to ignore the rants and demands and unreasonable behaviour and have become an expert at distraction tecnniques. Even to the point of telling her my other phone is ringing, there is someone at the door, the washing is on the line and it has started raining! anything to get her off the phone when she is being difficult and then most of the time when I call her back she has forgotten the complaint and we start again with a new conversation. In person, this is harder, but I still try to point out something, come up with something amazing that I have 'just remembered' that I must tell her, or discuss someone walking past or in the room - anything to not get involved in confronting the issues of her unbalanced demands and opinions. I have started to learn that I cannot change her mind, point out the error of her judgement or expect her to be able to understand when she is being difficult.
Please, don't also take two years to reach the conclusion that your mother will sadly, as a result of her illness, not be able to stop putting pressure on you to do what she thinks she wants. You must not beat yourself up about trying to make things right. They can't ever be right, and there will be good days and bad days. I try to relish the good times with her and put the bad ones to the back of my mind.
My friends are a great comfort to me, telling me I am a caring daughter, doing my absolute best and must also think of my children, husband and indeed myself. I would say the same to you!
Hoping this get better for you very soon.
Firstly, you poor thing. I have such empathy for you and would like to say it sounds as though you are amazing and doing a wonderful job holding it all together.
From reading about the hard time you are having and the replies from others doing their best to cope with their parents, is to know that, sadly, the situation, you, and I and others are in is so common. It can feel better to know that your situation with your mother is not unusual and there are lots of us in very similar situations.
My mother (identical behavioural patterns to your mother), is still living in the old family home. A massive house, where she is incredibly, lonely, isolated and frequently frightened. I have investigated several care homes that may be suitable for her but much of the time, she does not seem 'bad enough' (just yet) to need residential care. She just wants me. All the time.
She alternates between loving, fun, sweet and gentle company and then can behave in an aggressive, demanding, unreasonable and very upsetting manner, especially if I am not able to drop things and visit her when she demands. In a similar situation to yours, she resents the time that I am with me children and at my home caring for my own family and has made several 'hints' that the best thing for her would be to live in a little house next to me ... I realize this would not solve her problems as the illness will continue to get worse and I would end up with her demands increasing and taking over my life. Therefore, I think I have a choice. It is either to live my life with my husband, two young children and care for her as much as I can with visits, phone calls, arranging carers to visit her, take her to my dad (who has PD and is in a nursing home) - or, give up on my life and become her carer.
I have not come to this decision lightly. It may even appear harsh to you reading it. But ultimately it is about my sanity and my duty to my children and husband. I cannot be everything to all people and I believe I am entitled to my life - infact, my mother prior to her illness, was a fiercely independent woman who would have insisted on my having my own life.
I still have terrible anxiety and guilt about not being able to 'fix' her problems and make her happy, but I have spoken to medical staff and mental health nurses and even our appointed social worker for the past two years in order to get to this point. Speaking to professionals can be helpful as they have no emotion or connection and are able to be very objective and are also not in denial about the mental health condition (for example, I constantly refuse to accept how bad my mum is and am delusional in thinking she may even get better!).
Every day is a torment between doing what she would want me to do and doing what my head tells me is the sensible and right thing to do. I care for her greatly and we are incredibly close and have had a very loving and caring relationship for all my adult life. I am trying to ignore the rants and demands and unreasonable behaviour and have become an expert at distraction tecnniques. Even to the point of telling her my other phone is ringing, there is someone at the door, the washing is on the line and it has started raining! anything to get her off the phone when she is being difficult and then most of the time when I call her back she has forgotten the complaint and we start again with a new conversation. In person, this is harder, but I still try to point out something, come up with something amazing that I have 'just remembered' that I must tell her, or discuss someone walking past or in the room - anything to not get involved in confronting the issues of her unbalanced demands and opinions. I have started to learn that I cannot change her mind, point out the error of her judgement or expect her to be able to understand when she is being difficult.
Please, don't also take two years to reach the conclusion that your mother will sadly, as a result of her illness, not be able to stop putting pressure on you to do what she thinks she wants. You must not beat yourself up about trying to make things right. They can't ever be right, and there will be good days and bad days. I try to relish the good times with her and put the bad ones to the back of my mind.
My friends are a great comfort to me, telling me I am a caring daughter, doing my absolute best and must also think of my children, husband and indeed myself. I would say the same to you!
Hoping this get better for you very soon.
Eowen, I just wanted to say how brave you are for articulating this. My mum has been going downhill for a few years, but has got worse since my dad died late last year. She's in a wonderful residential home and although she recognises me as someone she knows it is as her cousin rather than her son. She has no memories of me as a child, and on the odd occasion I mention it she thinks I'm mad.
The woman who was my mother died a long time ago - the person there now is a stranger, an old lady who happens to look like my mum once did. The only good part is that she seems happy in the moment of where she is. I don't have the guilt of her asking me to take her away, though I suspect she doesn't do so because she doesn't think we are closely related enough to ask. Where the guilt hits me is I feel I should visit more and longer because she's my mum, but in all the ways that count she just isn't any more.
Poor Snoggy,
I agree with what everyone else has written, YOU MUST NOT FEEL GUILTY !!!!! Having said that, we all know that you will of course, just as we all do and will forever. My Mother has been gone 18 months now, but I still remember her tears and pleading when I took her to the nursing home. If I live to be 100 those memories and the guilt will still be as fresh in my mind, it will never diminish. On the other hand, I know I did the only thing I could, my Father died 3 weeks after Mum, from the stress of caring for her long after he should have. In a nightmare situation you are doing what you have to, you say you and your Mum were previously close so cling onto that thought and think how mortified she would be at how sad and worried you are now.
I found my friends, colleagues and family saved my sanity, lean on them, confide in them, use them to get through this.
Everyone on this site will tell you the same, you are doing the best you can in a terrible situation, your Mum is safe and cared for, please, please take care of yourself. Big hugs from all of us. X
feeling lost and frightened
hi i am new to this forum and i find i hard to put my feelings into words or write them down. I work in care and deal with people with dementia Alzheimers on a daily basis, being on the other side of the illness is hard, i am now having the professional people giving me their kind words and because i also deal with these people on a professional basis they speak to me on a basis of i know what is to come and what the inevitable outcome is. My husband is 54yrs old and has been diagnosed with rapid Alzheimers, i noticed last June little things and took him to the Doctors where they did a mini mental health test and sent him for a brain scan, we were then informed of the diagnoses.
He is at stage 4 and i can see a difference in him in the 2 months thathe has been diagnosed, i have 2 weeks off work and go back on monday he does have carers each morning coming into the into the home just to see that he is ok at this time he only needs prompting to wash and dress, he is ok with them he knows what is happening and keeps asking me how long he as got left. this upsets me and our children are in denial saying that he has been misdiaganosed i feel as though i have got no-one to talk to as when i try to speak to carers doctors etc they see me as a person who works in the industry not as some ones wife and needing questions answered. i feel scared of the prospect and frightened of the outcome of this horrible disease.
When my husband is frustrated by not remembering things he gets angry with me i try and be patient but at times i feel as though everything is getting on top of me. Then i feel guilty, i have to work to keep the house running as my husband as not worked for 10yrs due to ill health and does not recieve any benefits, my job is demanding and stressful when i come home i can not relax as i am then trying to make up for not being around during the day for my husband. As i have said i am on the other side of this disease now and i am finding it difficult, i don't know what the future holds care wise for my husband as he does not want to go into a home and i don't want him to go into one. i have to put my professional head on when i feel low. I praise all those carers out there who are in a similar situation as myself and tell myself that there are others worse off then myself as at the moment and i know that i will cope i can not afford to give up work but i know that in the future i may have to so that i can look after my husband full time. Is there anyone out there that can give me some advise on what facilities are out there so that i can look after my husband and still stay in work. as i am too torn in two with guilt.
hi i am new to this forum and i find i hard to put my feelings into words or write them down. I work in care and deal with people with dementia Alzheimers on a daily basis, being on the other side of the illness is hard, i am now having the professional people giving me their kind words and because i also deal with these people on a professional basis they speak to me on a basis of i know what is to come and what the inevitable outcome is. My husband is 54yrs old and has been diagnosed with rapid Alzheimers, i noticed last June little things and took him to the Doctors where they did a mini mental health test and sent him for a brain scan, we were then informed of the diagnoses.
He is at stage 4 and i can see a difference in him in the 2 months thathe has been diagnosed, i have 2 weeks off work and go back on monday he does have carers each morning coming into the into the home just to see that he is ok at this time he only needs prompting to wash and dress, he is ok with them he knows what is happening and keeps asking me how long he as got left. this upsets me and our children are in denial saying that he has been misdiaganosed i feel as though i have got no-one to talk to as when i try to speak to carers doctors etc they see me as a person who works in the industry not as some ones wife and needing questions answered. i feel scared of the prospect and frightened of the outcome of this horrible disease.
When my husband is frustrated by not remembering things he gets angry with me i try and be patient but at times i feel as though everything is getting on top of me. Then i feel guilty, i have to work to keep the house running as my husband as not worked for 10yrs due to ill health and does not recieve any benefits, my job is demanding and stressful when i come home i can not relax as i am then trying to make up for not being around during the day for my husband. As i have said i am on the other side of this disease now and i am finding it difficult, i don't know what the future holds care wise for my husband as he does not want to go into a home and i don't want him to go into one. i have to put my professional head on when i feel low. I praise all those carers out there who are in a similar situation as myself and tell myself that there are others worse off then myself as at the moment and i know that i will cope i can not afford to give up work but i know that in the future i may have to so that i can look after my husband full time. Is there anyone out there that can give me some advise on what facilities are out there so that i can look after my husband and still stay in work. as i am too torn in two with guilt.
KathleenKestral,
So sorry that you are having such a hard time at the moment. Having to deal with the consequences of Dementia on a personal basis is so much harder than on a 'structured' basis at work. Your colleagues obviously think that you are taking it all in your stride. Have you considered contacting the Alzheimers Society? they have outreach workers in most areas who can advise you on the help available and talk through your worries. It might be easier for you to talk to someone new rather than anyone that you work with.They also run support groups giving possible coping stratagies, and day care groups.
The reason you feel guilty is because you care so much and want to fix it for your husband, unfortunately it can't be fixed in that way, you are doing all you can, you can't do the impossible,you have nothing to feel guilty about. You need to keep your identity outside the home as well as providing financially for the two of you. Try not to be too upset when your husband asks how much time left, he is trying to make sense of it all with 'faulty wiring' He too wants to return to a time when he felt safe and in control, desperate for reassurance.
I am sure everyone visiting this site feels empathy for you, you are not alone!
So sorry that you are having such a hard time at the moment. Having to deal with the consequences of Dementia on a personal basis is so much harder than on a 'structured' basis at work. Your colleagues obviously think that you are taking it all in your stride. Have you considered contacting the Alzheimers Society? they have outreach workers in most areas who can advise you on the help available and talk through your worries. It might be easier for you to talk to someone new rather than anyone that you work with.They also run support groups giving possible coping stratagies, and day care groups.
The reason you feel guilty is because you care so much and want to fix it for your husband, unfortunately it can't be fixed in that way, you are doing all you can, you can't do the impossible,you have nothing to feel guilty about. You need to keep your identity outside the home as well as providing financially for the two of you. Try not to be too upset when your husband asks how much time left, he is trying to make sense of it all with 'faulty wiring' He too wants to return to a time when he felt safe and in control, desperate for reassurance.
I am sure everyone visiting this site feels empathy for you, you are not alone!
I really feel for you. We are not at this stage with Mum, although she too is in complete denial which is extremely wearing in itself, she still lives at home with Dad, although if anything happened to him we would need to consider a care home as Mum cannot be left alone and my husband and I both need to work.
The only thing I could say to you is that if, as with all Alzheimers sufferers, your Mum has short term memory problems, the fact that you do not visit everyday (or as often as you are doing now) will not register with her. It will register with YOU but your Mum won't be aware. It will still be stressful when you do visit but your Mum will not be aware of the last time you went to see her. I'm sure if you went 3 times a day she would not appreciate that you had been at all, so, easy as it is to say, you need to cut the guilt and cut back on the visits. It would be immensely unfair for your home life to fall apart for someone that is not even aware that you have been to see them. This sounds terribly hard when I read it back but I still believe that your own family should come first and your Mum (who is probably nothing like the Mum you grew up with and loved dearly) needs to take 2nd place.
Torn In Two with Guilt.............It's a horrible disease
Omg you have made me think..... as I am trying to get my mum into a care home as she has told me she is in a living hell and is very lonely. I live in England she is in Wales. I got her social worker to go and see her as she is losing weight (6stone) and is
leaving the gas on not lit, saying next door has her furniture, her linen, hiding food. The social worker said to her "Would you like to live nearer to your daughter?" She said she didn't want to live with me/move near me nothing but does she even understand the question? The care home is like a hotel she would have four members of her family living closer if she moved. We could all take turns to take her out etc. However I wondered if she had a lucid period and demanded to go home what would I do? All the visit did was they reduced her carers time by 15mins cause all they were doing was she made them a cup of tea and had a chat!!!!!!!! My mum wouldn't even know what she would want or what she would be allowed to ask.
This morning my mother rang me and told me that she is going to Glasgow at the
weekend. I asked her how she was going to do it and she said she had worked out a plan and out the phone down on me. All the social worker is worried about is that she has to know for definite that she has gone because if she fell at home and no-one knew
she was there because she couldn't go her job would be on the line. Yes folks read that line again. I feel I'm hitting my head against a brick wall and trying to walk in a tub of
concrete.Having read your post I realise I'm not the only one who feels like poo. I think
you are doing what is right for your mum and your family and thats all you can do. Chin up your not alone x
Omg you have made me think..... as I am trying to get my mum into a care home as she has told me she is in a living hell and is very lonely. I live in England she is in Wales. I got her social worker to go and see her as she is losing weight (6stone) and is
leaving the gas on not lit, saying next door has her furniture, her linen, hiding food. The social worker said to her "Would you like to live nearer to your daughter?" She said she didn't want to live with me/move near me nothing but does she even understand the question? The care home is like a hotel she would have four members of her family living closer if she moved. We could all take turns to take her out etc. However I wondered if she had a lucid period and demanded to go home what would I do? All the visit did was they reduced her carers time by 15mins cause all they were doing was she made them a cup of tea and had a chat!!!!!!!! My mum wouldn't even know what she would want or what she would be allowed to ask.
This morning my mother rang me and told me that she is going to Glasgow at the
weekend. I asked her how she was going to do it and she said she had worked out a plan and out the phone down on me. All the social worker is worried about is that she has to know for definite that she has gone because if she fell at home and no-one knew
she was there because she couldn't go her job would be on the line. Yes folks read that line again. I feel I'm hitting my head against a brick wall and trying to walk in a tub of
concrete.Having read your post I realise I'm not the only one who feels like poo. I think
you are doing what is right for your mum and your family and thats all you can do. Chin up your not alone x
Guilt is an interesting emotion, if you look up the definition you will see:
Guilt is the state of being responsible for the commission of an offense.It is also a cognitive or an emotional experience that occurs when a person realizes or believes—accurately or not—that he or she has violated a moral standard, and bears significant responsibility for that violation. It is closely related to the concept of remorse.
While I understand how highly emotional it can be to want to do more yet realise that it is not the best thing for you and your own family to do this, I would point you back to the definition and ask that you remember that you have not committed any offense nor violated any moral standard.
I would aslo ask that you understand the physical disease that your Mum has, has most probably caused damage to the part of her brain that allows her to apply logic and reason to any situation, therefore you attemps to reason with her are sadly futile as she just doesn't have the ability to understand this concept.
The only thing you can do is be kinder to yourself and respond to what your Mum is feeling rather than saying, acknowledge that she is unhappy and sad and offer her comfort by validating her feelings but be firm in what you can and can not do, this is NOT your fault!
Your Mum raised you to be a kind and caring adult, this is clear from what you are feeling, she didn't raise you to be miserable and unhappy? You can only do your best and by the sounds of it, you are striving to do much more than that and therefore setting yourself up to fail each visit!
Please understand that the nature of your Mums disease means that she can not change her ways, but you can...........be kinder to yourself and accept that the decisions you have made are right, your Mum is well cared for and safe.
In times of stress, ask yourself what advice your Mum might give you if she didn't have dementia?
Guilt is the state of being responsible for the commission of an offense.It is also a cognitive or an emotional experience that occurs when a person realizes or believes—accurately or not—that he or she has violated a moral standard, and bears significant responsibility for that violation. It is closely related to the concept of remorse.
While I understand how highly emotional it can be to want to do more yet realise that it is not the best thing for you and your own family to do this, I would point you back to the definition and ask that you remember that you have not committed any offense nor violated any moral standard.
I would aslo ask that you understand the physical disease that your Mum has, has most probably caused damage to the part of her brain that allows her to apply logic and reason to any situation, therefore you attemps to reason with her are sadly futile as she just doesn't have the ability to understand this concept.
The only thing you can do is be kinder to yourself and respond to what your Mum is feeling rather than saying, acknowledge that she is unhappy and sad and offer her comfort by validating her feelings but be firm in what you can and can not do, this is NOT your fault!
Your Mum raised you to be a kind and caring adult, this is clear from what you are feeling, she didn't raise you to be miserable and unhappy? You can only do your best and by the sounds of it, you are striving to do much more than that and therefore setting yourself up to fail each visit!
Please understand that the nature of your Mums disease means that she can not change her ways, but you can...........be kinder to yourself and accept that the decisions you have made are right, your Mum is well cared for and safe.
In times of stress, ask yourself what advice your Mum might give you if she didn't have dementia?
I understand only too well of the guilt you are going through. I live with my mother in her house and like you does not accept there is anything wrong with her and it is me who is the problem. she has been referred or is about to be referred to mental health for her dementia and I am finding it very hard to deal with all this and making mistakes at work due to worry.
None of us should feel any guilt as we have done what we can and the cared for person is not able to rationalise their thoughts and needs and wants. It isn't our fault and unfortunately the agencies don't help much due to budget constraints and inability to understand what the carers are going through. All I can offer is heartfelt sympathy for you as there is no easy answer. if you brought her home she would not cope and if you tried she would want to go back again. Older people are also adept at putting the guilt on their relative. Tell her how you are feeling and a little bit may rub off.
None of us should feel any guilt as we have done what we can and the cared for person is not able to rationalise their thoughts and needs and wants. It isn't our fault and unfortunately the agencies don't help much due to budget constraints and inability to understand what the carers are going through. All I can offer is heartfelt sympathy for you as there is no easy answer. if you brought her home she would not cope and if you tried she would want to go back again. Older people are also adept at putting the guilt on their relative. Tell her how you are feeling and a little bit may rub off.
I know how you feel
I am so sorry you are having to deal with this terrible dilemma. My mother is in a care home for 2 weeks whilst I try to work out carers for when she returns. Not hopeful. I have considered that maybe she is best there but that I have to assess tomorrow. Do the carers at the home offer any advice to you? Have you asked them how she is when you are not there.. whether she's distressed, angry, agitated and constantly asking for you? It might be that seeing you does trigger her desire to be with you but the real question is, how is she when you are not there. I would try to get that information first. I have spoken to the head of the dementia unit but also spoken to on the spot carers at the home, the people who are on the front line and dealing with the day to day. Try and talk to them. Let us know how you get on. Good luck.
I am so sorry you are having to deal with this terrible dilemma. My mother is in a care home for 2 weeks whilst I try to work out carers for when she returns. Not hopeful. I have considered that maybe she is best there but that I have to assess tomorrow. Do the carers at the home offer any advice to you? Have you asked them how she is when you are not there.. whether she's distressed, angry, agitated and constantly asking for you? It might be that seeing you does trigger her desire to be with you but the real question is, how is she when you are not there. I would try to get that information first. I have spoken to the head of the dementia unit but also spoken to on the spot carers at the home, the people who are on the front line and dealing with the day to day. Try and talk to them. Let us know how you get on. Good luck.
"I want to go home..." Guilt and how I cope.
I've just read this debate - it's a common problem, clearly. My hubby with mixed dementia has been in his EMI "home" just over 4 weeks, after 2 months in a older men's ward in hospital. While there he kept asking me when he was going home - I fudged it. Once he moved to the nursing home, he was quiet for 2 days, then began saying "What am I going to do?" He also got up or tried to walk, and fell over - he has a problem with bearing his own weight, and actually broke his hip while in hospital.
I was by then fully aware that I could no longer look after him at home [I am 69, he is 71] - we already had his Health LPA. I also have my 36 year old son living with me, who has a mental disorder. The stress of how my husband was becoming triggered some angry "episodes" from my son. Social workers decided there were safeguarding issues for all of us, plus the paid carers who had been coming to our house twice a week. For the last 5 days he was here, I'd been getting up to him several times a night, as he was in physical pain [difficult to medicate], unsettled, not finding the loo, stumbling about, frequently trying to wee or poo & not being able to, etc. He became incontinent at that time - was admitted to hospital & needed a catheter which he could not understand - so had to have day long nursing care.
I had already come to terms with the fact that he was not the man he used to be - he does not understand why he is in the home, but he does appreciate their kindness to him. He does not understand why I leave after visiting him for an hour or so. I usually go 5 times a week, but may well cut this down a little. I did have a bad bout of sadness and guilt after he had been in there 2 weeks, as he seemed very unsettled.
When I go in I take in some sewing [for name tapes on his clothes!] and also a labelled CD or two to play on the small CD player I left for him. He can't operate that himself, but the staff may have time... Otherwise his visitors can do it (my son & sister sometimes go). He enjoys music - pop from his youth, or jazz / classical - and looks happier while it plays. Recently he had his 71st birthday in there - we took him chocolates, biscuits, and a flowering plant. I usually share a chocolate or one of the fancy biscuits with him in the afternoon. Small shared pleasures are all we can have together. Otherwise he is pretty passive. I have also taken in a "memory book" that I made for him last year, and put up some of his own art work, photos & some knick-knacks in the room - I am not sure if he responds to them but it makes it look more cheerful.
We are still in the process of adapting to this pattern, and I am also juggling money while waiting for our finance LPA. However, the die is cast - I had to assure friends that "He is not coming home." I don't say this to him, but just: "I will see you tomorrow [or - in 2 days]", kiss him, say goodbye and then go off quickly. Lengthy farewells don't work. Once I'm gone, I think he switches off & the staff take over.
There are a few stimuli - a day out in a week's time, a family day, a visiting "pat" dog and TV on in the common room or lounge, though he tends to spend most time in his room. Of course it's not ideal - we can't work miracles. Just accept you're doing the best you can for your relative - they will never understand why they are there. I had a few days away last week for the first time for 14 months - it did me so much good. I hope you find a solution... Good luck
I've just read this debate - it's a common problem, clearly. My hubby with mixed dementia has been in his EMI "home" just over 4 weeks, after 2 months in a older men's ward in hospital. While there he kept asking me when he was going home - I fudged it. Once he moved to the nursing home, he was quiet for 2 days, then began saying "What am I going to do?" He also got up or tried to walk, and fell over - he has a problem with bearing his own weight, and actually broke his hip while in hospital.
I was by then fully aware that I could no longer look after him at home [I am 69, he is 71] - we already had his Health LPA. I also have my 36 year old son living with me, who has a mental disorder. The stress of how my husband was becoming triggered some angry "episodes" from my son. Social workers decided there were safeguarding issues for all of us, plus the paid carers who had been coming to our house twice a week. For the last 5 days he was here, I'd been getting up to him several times a night, as he was in physical pain [difficult to medicate], unsettled, not finding the loo, stumbling about, frequently trying to wee or poo & not being able to, etc. He became incontinent at that time - was admitted to hospital & needed a catheter which he could not understand - so had to have day long nursing care.
I had already come to terms with the fact that he was not the man he used to be - he does not understand why he is in the home, but he does appreciate their kindness to him. He does not understand why I leave after visiting him for an hour or so. I usually go 5 times a week, but may well cut this down a little. I did have a bad bout of sadness and guilt after he had been in there 2 weeks, as he seemed very unsettled.
When I go in I take in some sewing [for name tapes on his clothes!] and also a labelled CD or two to play on the small CD player I left for him. He can't operate that himself, but the staff may have time... Otherwise his visitors can do it (my son & sister sometimes go). He enjoys music - pop from his youth, or jazz / classical - and looks happier while it plays. Recently he had his 71st birthday in there - we took him chocolates, biscuits, and a flowering plant. I usually share a chocolate or one of the fancy biscuits with him in the afternoon. Small shared pleasures are all we can have together. Otherwise he is pretty passive. I have also taken in a "memory book" that I made for him last year, and put up some of his own art work, photos & some knick-knacks in the room - I am not sure if he responds to them but it makes it look more cheerful.
We are still in the process of adapting to this pattern, and I am also juggling money while waiting for our finance LPA. However, the die is cast - I had to assure friends that "He is not coming home." I don't say this to him, but just: "I will see you tomorrow [or - in 2 days]", kiss him, say goodbye and then go off quickly. Lengthy farewells don't work. Once I'm gone, I think he switches off & the staff take over.
There are a few stimuli - a day out in a week's time, a family day, a visiting "pat" dog and TV on in the common room or lounge, though he tends to spend most time in his room. Of course it's not ideal - we can't work miracles. Just accept you're doing the best you can for your relative - they will never understand why they are there. I had a few days away last week for the first time for 14 months - it did me so much good.
I hope you find a solution... Good luck
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I really applaud your pragmatic attitude to the situation you've found yourself in; dementia has claimed one life - well done you for not allowing it to claim yours too. I hope you can now spend quality time with your son.
Maybe - trying to take in the bigger picture - we know that guilt is often associated with harmful events and circumstances.
Perhaps Guilt can be corrective or restrictive?
So maybe a working solution is to ask something along lines of: does this feeling or intensity of the feeling be it guilt or something else make for better pragmatic progression of all parties (self, the person with dementia, other siblings, family, friends and professionals) to some understood and gainful good?
If the answer is Yes: then stick with it.
If the answer is No: why let the feelings and thoughts be disruptive?
Perhaps Guilt can be corrective or restrictive?
So maybe a working solution is to ask something along lines of: does this feeling or intensity of the feeling be it guilt or something else make for better pragmatic progression of all parties (self, the person with dementia, other siblings, family, friends and professionals) to some understood and gainful good?
If the answer is Yes: then stick with it.
If the answer is No: why let the feelings and thoughts be disruptive?
I dont think you can ever not feel guilty, but its out of your control, so you just have to deal with it unfortunately. My Mum lived with us for 5 yrs, until she started getting all the signs, and with her being diabetic aswell, it was just too much. I work full time, hubby disabled, we have 2 children. She has been in her nursing home now for 6 mths, and still moans about it, she has good days and bad days, some days she wont even speak to any of us when we visit, and that does hurt.
I have started going twice a week now instead of daily, and am going to drop down to once a wk when I can bear to( guilt again you see).
We are all here for you, just rant away!
I have started going twice a week now instead of daily, and am going to drop down to once a wk when I can bear to( guilt again you see).
We are all here for you, just rant away!
Guilt is a terrrible thing!
Please be strong.There are many many people feeling the same way as you and we all empathise with you.
My dearest Mum has been in a nursing home for 6 years with Alzheimers and every time I see her I get upset.
In the beginning she was unable to reason and became angry and sometimes violent if we didn't see her way. This is part of this terrible disease and it is not your fault. I am sure if your Mum knew what she was doing she would feel awful.
I have no family,but I think you should make yours your first priority and no feel so guilty. They have to see you upset and it must have an effect on them and their relationship with Gran.
Gradually your Mum will receed into her own world and I am told most sufferers are happy.
My Mum is going into the final stages after her long struggle and I can't say I haven't had times when I wish she could pass peacefully away. Even though it's bad at the moment, savour the time you have and laugh about the mishaps and arguements. Hard,but you must for your own sake.
I hope you find the strength to get yourself away for one week with the family and spend the time for you. Your Mum will be none the wiser if you don't mention it. My Mum used to think I have just gone out of the room and had no comprehension of time.
My thoughts are with you. Seedling
Please be strong.There are many many people feeling the same way as you and we all empathise with you.
My dearest Mum has been in a nursing home for 6 years with Alzheimers and every time I see her I get upset.
In the beginning she was unable to reason and became angry and sometimes violent if we didn't see her way. This is part of this terrible disease and it is not your fault. I am sure if your Mum knew what she was doing she would feel awful.
I have no family,but I think you should make yours your first priority and no feel so guilty. They have to see you upset and it must have an effect on them and their relationship with Gran.
Gradually your Mum will receed into her own world and I am told most sufferers are happy.
My Mum is going into the final stages after her long struggle and I can't say I haven't had times when I wish she could pass peacefully away. Even though it's bad at the moment, savour the time you have and laugh about the mishaps and arguements. Hard,but you must for your own sake.
I hope you find the strength to get yourself away for one week with the family and spend the time for you. Your Mum will be none the wiser if you don't mention it. My Mum used to think I have just gone out of the room and had no comprehension of time.
My thoughts are with you. Seedling
Don't feel guilty.I know exactly how you are feeling, my Mum was the same until recently.She's been in the home 3 years now and is further on the journey so no longer remembers enough of anything to hanker after it. I stopped taking mine out on trips during the past year as it made things worse and she is not interested in leaving the home for anything now.Last Christmas Day was the last time she went anywhere and she got so confused and it was so awful we won't try it again this coming Christmas.
It is awful to have to deal with visits and guilt and all else that goes with this dratted disease that robs us of our relative, but as long as we hold on to the fact that what we do is best for the sufferer then that's the main thing.
It is awful to have to deal with visits and guilt and all else that goes with this dratted disease that robs us of our relative, but as long as we hold on to the fact that what we do is best for the sufferer then that's the main thing.
cyril
Hi, I am new to all this, reading all your replies to these sad plights has really opened my eyes. it seems there is an awful lot around the corner for me. I am 78 years of age and my wife is 75. I have just got her to go to the doctors with her condition, she has had a blood test and heart trace and all is okay. The doctor has referred her to the memory clinic. I love my wife dearly and I am going to look after her as best I can. We have been married for 56 years and when we were quite young we made a promise to each other that we would not let each other go into a home. After reading all your sad stories, I have to admit I am getting a little worried.
All the best to you all.
Kind regards. Cyril.
Hi, I am new to all this, reading all your replies to these sad plights has really opened my eyes. it seems there is an awful lot around the corner for me. I am 78 years of age and my wife is 75. I have just got her to go to the doctors with her condition, she has had a blood test and heart trace and all is okay. The doctor has referred her to the memory clinic. I love my wife dearly and I am going to look after her as best I can. We have been married for 56 years and when we were quite young we made a promise to each other that we would not let each other go into a home. After reading all your sad stories, I have to admit I am getting a little worried.
All the best to you all.
Kind regards. Cyril.
