• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

I need someone to talk to

Philbo

Registered User
Feb 28, 2017
834
Kent
Thanks @teresa pearson & @Philbo xx
That'll be why I couldn't find a fee list :rolleyes: :)
Its good to hear recommendations from people who have used a service. Shame about the waiting but understandable I suppose x
Obviously I don't know which part of the country you are in, so I can only go by the organisation based in my county, but I found them to be highly supportive and knowledgeable. When I initially contacted them, they took preliminary details over the phone, followed by a face to face visit. The chap who came spent a lot of time both getting to know our situation, as well as covering many aspects of dealing with dementia.

After about 9 months, we were offered a regular visit on Tuesday afternoons, 13:30 to 16:30 (they usually ask if you would prefer a male or female visitor), and the lady who came was really nice. The office would always call me if the lady could not make it for any reason.

Kind regards
Phil
 

annielou

Registered User
Sep 27, 2019
1,649
Yorkshire
Obviously I don't know which part of the country you are in, so I can only go by the organisation based in my county, but I found them to be highly supportive and knowledgeable. When I initially contacted them, they took preliminary details over the phone, followed by a face to face visit. The chap who came spent a lot of time both getting to know our situation, as well as covering many aspects of dealing with dementia.

After about 9 months, we were offered a regular visit on Tuesday afternoons, 13:30 to 16:30 (they usually ask if you would prefer a male or female visitor), and the lady who came was really nice. The office would always call me if the lady could not make it for any reason.

Kind regards
Phil
Thanks Phil x
I'm in South Yorkshire, they must be in this area as carer support gave me their leaflet. I'll try them, though getting mum to accept any help is not going well so far but maybe by time we get up the list she might have got used to idea.
Thanks x
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
My husband was diagnosed with AD in 2017 although he had the symptoms for some time before. I have no family close by and am his sole carer. He struggles to communicate and I mostly fail to understand what he is saying. I am 20 years younger than my husband. I have managed up to now, but in the last few months the social worker has been trying to find options to give me some respite. My problem is that my husband flatly refuses to have anyone else to sit with him or take him out. We have tried a PA, a Day Centre, and he will not cooperate. This week I have had a volunteer from the RAFA offering to come to spend some time with him, and again he refuses to have him come. I am at the end of my tether, as I can’t have any time to my self, nor even someone to chat to other than phone calls. I don’t know how much longer I can face this. Does anyone have any experience of a similar situation please?
Hi Vitesse:

I found with my husband what he says & what he does are two totally different things. He needed PSW'S (Personal Support Workers), he said NO, NO, NO, I am fine I don't need them, I got them anyway to help him with shower, etc. They come in daily and are now a part of his routine, he enjoys having company and someone to talk to, he rambles on & on to them and they listen patiently, which is more than I wold do. He seems to make more sense with the PSW's than he does with me, sometimes I wonder if he does it on purpose just to make me upset. I tried bringing people into the house and I got lucky. My husband was always a social person anyway, he enjoyed going out & meeting new people, he also had a big ego and still does so I play with that aspect of his personality a lot. Everybody says take care of yourself , but it is difficult when they don't want to let you go anywhere We are all here for you on Talking Point, anytime, any day. Someone is always listening (reading),. There are many people on here that have gone through or are going through the same things (in one way or another) you are experiencing. Reading some of these posts is one way to do something for yourself, Whether they make you laugh or cry, they always make you think, of solutions, of alternatives and different methods of dealing with problems.

Take Care, All the Best & Many Cyber Hugs To You.:):)
 

White Rose

Registered User
Nov 4, 2018
679
You're not alone. My husband just sits and gazes at me like a puppy. He follows me round the house and no longer reads or uses his computer (for the news etc), he just sits and wants to be in the same room as me. I still manage to work part-time, because it gets me away from him for a few hours 2-3 days a week. I don't know how much longer this will be possible - though I tell him where I'm going and leave a written note, he almost always calls me to ask where I am and frequently goes round my daughter's house asking where I am. He's reluctant to go out socially, though sometimes I make that happen, and when anyone comes round he doesn't say a word, it's as if he isn't there. I've tried to get him to accept a helper for when I'm out, to make sure he has breakfast/lunch, but he won't accept that. He only wants to do things with me, he even asks if he can come to work with me. I should be patient and caring like so many people on this forum seem to be, but I'm angry and frustrated and when it's time to go home I often go for a coffee to put off that walk through the door. I'm 67 and I still have lots of energy and things I want to do with my life but I can't because of this ball and chain - OK I've said it. We've been together since I was 17, and I loved my husband through thick and thin, but now he's no longer my husband and that love is wearing very thin. I don't know how other people manage to be so self-sacrificing. I'm having therapy for depression which is helping a bit, but I can't shake the depression off because the cause of it is sitting at home waiting to suck all the joy and vitality out of me the minute I walk through the door. Is there anyone else out there who feels like this? Everyone else seems to be so patient and kind.
Stayingalive, I absolutely feel the same as you about everything you've said, my heart used to sink when I'd been at work and it was time to go home. I had a carer in a couple of times a day for my partner while I was at work but I'm no longer working for various reasons and it was getting to the stage of him needing more care. Now I'm struggling with depression so I'm going to look at going back to work and taking him to day care but he's deteriorating so quickly, he understands nothing I tell him but often wants to 'talk' and it's all about him and I can't understand a thing he's trying to tell me. They are so needy, so self-centred We all go through that grief thing of missing the one we love (who's really not there anymore) and the loneliness because our companion is now no more than a toddler who needs constant attention. Like you (and probably like most people on this forum) I absolutely hate this life of having no freedom, no life of my own, the negativity, the mood swings (his and mine!). I want to be caring and patient and kind but it's becoming more and more difficult, they suck the life out of you - though they can't help it of course and would never choose to have this cruel disease or to put us through the hell that they do!
 

Vitesse

Registered User
Oct 26, 2016
216
Hi Vitesse:

I found with my husband what he says & what he does are two totally different things. He needed PSW'S (Personal Support Workers), he said NO, NO, NO, I am fine I don't need them, I got them anyway to help him with shower, etc. They come in daily and are now a part of his routine, he enjoys having company and someone to talk to, he rambles on & on to them and they listen patiently, which is more than I wold do. He seems to make more sense with the PSW's than he does with me, sometimes I wonder if he does it on purpose just to make me upset. I tried bringing people into the house and I got lucky. My husband was always a social person anyway, he enjoyed going out & meeting new people, he also had a big ego and still does so I play with that aspect of his personality a lot. Everybody says take care of yourself , but it is difficult when they don't want to let you go anywhere We are all here for you on Talking Point, anytime, any day. Someone is always listening (reading),. There are many people on here that have gone through or are going through the same things (in one way or another) you are experiencing. Reading some of these posts is one way to do something for yourself, Whether they make you laugh or cry, they always make you think, of solutions, of alternatives and different methods of dealing with problems.

Take Care, All the Best & Many Cyber Hugs To You.:):)
Thank you for your kind words and Cyber hugs!! I am going to try to get a befriender in without telling him, and see how it goes. Currently he even gets cross if I’m talking on the phone! Some days, I can take it, but other days it’s all too much. The SW and Community Nurse are all saying they will close the books because they can’t do anything for him if he won’t cooperate, and I just see this black time ahead when there’s just me to see through this on my own. I am even finding writing this on Talking Point difficult, the more I talk about it, the worse it gets. If I don’t talk about it, I can pretend it’s not happening!!
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Thank you for your kind words and Cyber hugs!! I am going to try to get a befriender in without telling him, and see how it goes. Currently he even gets cross if I’m talking on the phone! Some days, I can take it, but other days it’s all too much. The SW and Community Nurse are all saying they will close the books because they can’t do anything for him if he won’t cooperate, and I just see this black time ahead when there’s just me to see through this on my own. I am even finding writing this on Talking Point difficult, the more I talk about it, the worse it gets. If I don’t talk about it, I can pretend it’s not happening!!
Hi Vitesse:

We are all in this together, don't feel bad talking about it, we are just here to listen. We've all been through it and unfortunately it is happening and if you pretend it isn't you are not being fair to yourself. I remember when my kids were young everybody told me it takes a village to raise a child (parents, grandparents, uncles, aunts, cousins, doctors, dentists and the list goes on & on), it takes an even BIGGER village to take care of someone with dementia. We need as much help as we can get. Set yourself up with as much help as you can early on. Take care.:):) :Much love with many cyber hugs to you.:):):)
 

Vitesse

Registered User
Oct 26, 2016
216
Hi Vitesse:

We are all in this together, don't feel bad talking about it, we are just here to listen. We've all been through it and unfortunately it is happening and if you pretend it isn't you are not being fair to yourself. I remember when my kids were young everybody told me it takes a village to raise a child (parents, grandparents, uncles, aunts, cousins, doctors, dentists and the list goes on & on), it takes an even BIGGER village to take care of someone with dementia. We need as much help as we can get. Set yourself up with as much help as you can early on. Take care.:):) :Much love with many cyber hugs to you.:):):)
Thank you for your supportive words. I know it’s best to face up to the problem, and I have always been a strong person. However, this is something else!! Today we saw the mental health doctor and she is making every effort to help me as well as my husband, which has left me feeling a lot better. Coincidentally, my husband is less agitated today so we’re having a better day all round.
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Thank you for your supportive words. I know it’s best to face up to the problem, and I have always been a strong person. However, this is something else!! Today we saw the mental health doctor and she is making every effort to help me as well as my husband, which has left me feeling a lot better. Coincidentally, my husband is less agitated today so we’re having a better day all round.
Hi Vitesse:

Good to hear.:)
 

Vitesse

Registered User
Oct 26, 2016
216
Hi Vitesse:

Good to hear.:)
Hi Vitesse:

Good to hear.:)
Yesterday was reasonable except that a young man lost control of his motorbike, came off and his bike slid into the side of my car which I had just parked in town. As if I don’t have enough trouble. Now I have to sort out the claim on insurance. Actually, yesterday, sorting that out took my mind off my domestic situation to some extent. I thought things were going better at home, then today he refused to talk to his son on Skype, just walked away when he saw him. Then later I was talking on the phone to the car repair people, when he came over screaming for me to get off the phone. When I’d finished the call, I gave him a piece of my mind, onl6 to be told that I was spending time with this man, and if I was on the phone again, I should get out etc.etc. For two pins, I would have gone!! I know it’s the dementia, but it is no less upsetting for that. The mental health nurse is visiting tomorrow, but nobody other than me ever tells him he’s out of order. I rarely have a chance to chat to anyone in person, and I would certainly go mad if I couldn’t speak on the phone either.
 

kindred

Registered User
Apr 8, 2018
2,493
Yesterday was reasonable except that a young man lost control of his motorbike, came off and his bike slid into the side of my car which I had just parked in town. As if I don’t have enough trouble. Now I have to sort out the claim on insurance. Actually, yesterday, sorting that out took my mind off my domestic situation to some extent. I thought things were going better at home, then today he refused to talk to his son on Skype, just walked away when he saw him. Then later I was talking on the phone to the car repair people, when he came over screaming for me to get off the phone. When I’d finished the call, I gave him a piece of my mind, onl6 to be told that I was spending time with this man, and if I was on the phone again, I should get out etc.etc. For two pins, I would have gone!! I know it’s the dementia, but it is no less upsetting for that. The mental health nurse is visiting tomorrow, but nobody other than me ever tells him he’s out of order. I rarely have a chance to chat to anyone in person, and I would certainly go mad if I couldn’t speak on the phone either.
I so understand, my OH used to talk or shout through all my phone calls. I remember once when the gas boiler had given up and I was trying desperately to get help (midwinter and freezing), he was shouting all the time down the phone and help was impossible. My goodness me the ordeals this puts us through. I am sorry about the accident. I hope the visit by the mental health nurse went well.
all fellow feeling, Kindred.
 

Vitesse

Registered User
Oct 26, 2016
216
I so understand, my OH used to talk or shout through all my phone calls. I remember once when the gas boiler had given up and I was trying desperately to get help (midwinter and freezing), he was shouting all the time down the phone and help was impossible. My goodness me the ordeals this puts us through. I am sorry about the accident. I hope the visit by the mental health nurse went well.
all fellow feeling, Kindred.
Thanks so much for taking the time to write. I always feel it’s only happening to me (of course I know it isn’t!). Why on earth do they do that?
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Yesterday was reasonable except that a young man lost control of his motorbike, came off and his bike slid into the side of my car which I had just parked in town. As if I don’t have enough trouble. Now I have to sort out the claim on insurance. Actually, yesterday, sorting that out took my mind off my domestic situation to some extent. I thought things were going better at home, then today he refused to talk to his son on Skype, just walked away when he saw him. Then later I was talking on the phone to the car repair people, when he came over screaming for me to get off the phone. When I’d finished the call, I gave him a piece of my mind, onl6 to be told that I was spending time with this man, and if I was on the phone again, I should get out etc.etc. For two pins, I would have gone!! I know it’s the dementia, but it is no less upsetting for that. The mental health nurse is visiting tomorrow, but nobody other than me ever tells him he’s out of order. I rarely have a chance to chat to anyone in person, and I would certainly go mad if I couldn’t speak on the phone either.
Hi Vitesse:

Everybody always speaks to them so politely & quietly thinking they don't really understand when they really do, then when they leave we are left to try to make them understand Yesterday a lady came to see how he was and agreed with everything he said, how he was right. Well he remembered that alright. Today all I have heard all day is how the lady agreed with him. They do understand, it might take them longer to process it but when they do ,we end up always being the bad guys that have to disagree with them. It's just not FAIR.
 

Vitesse

Registered User
Oct 26, 2016
216
Hi Vitesse:

Everybody always speaks to them so politely & quietly thinking they don't really understand when they really do, then when they leave we are left to try to make them understand Yesterday a lady came to see how he was and agreed with everything he said, how he was right. Well he remembered that alright. Today all I have heard all day is how the lady agreed with him. They do understand, it might take them longer to process it but when they do ,we end up always being the bad guys that have to disagree with them. It's just not FAIR.
Anyone who comes from social services or mental health team see this quiet polite man who never argues. As you say, when they’re gone, reality kicks in and I’m back picking up the pieces. Today we had a visit from a volunteer from the RAF association, he chatted about his service days, and my husband was quite amenable. I don’t know how much he understood. I hadn’t told him the man was coming, and I haven’t asked anything about it. The volunteer will come again in two weeks and I’ll see how it goes a second time. At least I had someone new to talk to!! This afternoon he reverted to his more usual self, but it didn’t last too long, and it was a better day overall.
I do appreciate your comments.
 

annielou

Registered User
Sep 27, 2019
1,649
Yorkshire
Glad your visit went ok, hope it continues to go well without your husband getting annoyed or upset about them coming x its nice to hear your day was a better one too x
 

Roseleigh

Registered User
Dec 26, 2016
325
It’s terrible isn’t it, my OH went through a phase like this soon after he was diagnosed, but then it passed and he became very childlike although he still didn’t want me to go out. I don’t know what’s happened now but the aggression is back. It sounds like there’s no easy answer, but it’s very hard to live with! x
Mine is on Risperidone now, which is helping a lot, not perfect but a big improvement. He's had to have the dose raised to work though.
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Anyone who comes from social services or mental health team see this quiet polite man who never argues. As you say, when they’re gone, reality kicks in and I’m back picking up the pieces. Today we had a visit from a volunteer from the RAF association, he chatted about his service days, and my husband was quite amenable. I don’t know how much he understood. I hadn’t told him the man was coming, and I haven’t asked anything about it. The volunteer will come again in two weeks and I’ll see how it goes a second time. At least I had someone new to talk to!! This afternoon he reverted to his more usual self, but it didn’t last too long, and it was a better day overall.
I do appreciate your comments.
Hi Vitesse:

Glad to help.:):) He's so sweet & kind to all the PSW's & others who visit him but I'm just a piece of garbage. It makes me so angry. He's so agreeable with everyone, today the incontinence nurse came & told him he had to wear his DEPENDS (incontinence pads). YES, YES, YES, I understand. 10 minutes after she left he tore them off. She told him he had to sit down to pee, OKAY, will do, has he done it since. NO I don't think so, but he has peed on the floor. Are they all playing games? Sometimes I think I'm the one being played, not the player.:):)
 

Vitesse

Registered User
Oct 26, 2016
216
Hi Vitesse:

Glad to help.:):) He's so sweet & kind to all the PSW's & others who visit him but I'm just a piece of garbage. It makes me so angry. He's so agreeable with everyone, today the incontinence nurse came & told him he had to wear his DEPENDS (incontinence pads). YES, YES, YES, I understand. 10 minutes after she left he tore them off. She told him he had to sit down to pee, OKAY, will do, has he done it since. NO I don't think so, but he has peed on the floor. Are they all playing games? Sometimes I think I'm the one being played, not the player.:):)
Perhaps my life isn’t so bad after all!! Fortunately incontinence hasn’t arrived at our house yet, but whatever I suggest or tell him needs to happen, is just ignored. It’s as though I’m not saying anything and he knows better.
 

Stayingalive

Registered User
Nov 24, 2019
24
Stayingalive, I absolutely feel the same as you about everything you've said, my heart used to sink when I'd been at work and it was time to go home. I had a carer in a couple of times a day for my partner while I was at work but I'm no longer working for various reasons and it was getting to the stage of him needing more care. Now I'm struggling with depression so I'm going to look at going back to work and taking him to day care but he's deteriorating so quickly, he understands nothing I tell him but often wants to 'talk' and it's all about him and I can't understand a thing he's trying to tell me. They are so needy, so self-centred We all go through that grief thing of missing the one we love (who's really not there anymore) and the loneliness because our companion is now no more than a toddler who needs constant attention. Like you (and probably like most people on this forum) I absolutely hate this life of having no freedom, no life of my own, the negativity, the mood swings (his and mine!). I want to be caring and patient and kind but it's becoming more and more difficult, they suck the life out of you - though they can't help it of course and would never choose to have this cruel disease or to put us through the hell that they do!
 

Stayingalive

Registered User
Nov 24, 2019
24
Thank you, your comments and others have really helped me. My therapist suggested I reach out when I told her how guilty I felt about hating my husband some of the time, she said there would be other people out there who felt the same, and she was right. I can't bear to go to dementia cafes because they're full of white-haired ladies who are talking about all the things they do to stimulate their husbands and I'm not a white haired old lady and I can't be the sort of carer they're being.