I feel so alone

Philpsie

Registered User
Jan 6, 2016
35
0
my husband has dementia, he’s no longer able to hold a conversation with me. I’m only 57, I work and up to now have coped on my own.
M (my husband) gets nasty around the grandchildren, we had a party and he got angry and started grabbing the children. The next day he got nasty with my eldest grandson that I was looking after whilst his mum was out, he ended up shoving me so we had to walk the streets until out daughter came home.
I phoned the dementia team and they’ve said we shouldn’t see the children as it a trigger until they find out from the consultant how his meds can be changed. I was told this on Monday, it’s now Thursday night and I’ve still not heard anything! My grandchildren are my life and without my children visiting I’m completely isolated. I’m feeling very depressed and tearful. I don’t know how much longer I can cope with this. I’m finding it hard to put one foot in front of the other, apart from my very close family which I can’t see I feel no one cares. I have friends that don’t bother with me now, I’m so unhappy!
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Oh @Philpsie, I feel for you, I really do. I would feel similarly in your situation.
I hope the dementia team is in touch soon. In any case, though, it cannot be right that you should have to give up seeing your grandchildren. Has your husband had an assessment of his needs? It sounds as though you need some help and sharpish!!
Sending you hugs and will look again in the morning to see how you are :)
Lindy xx
 

Philpsie

Registered User
Jan 6, 2016
35
0
Oh @Philpsie, I feel for you, I really do. I would feel similarly in your situation.
I hope the dementia team is in touch soon. In any case, though, it cannot be right that you should have to give up seeing your grandchildren. Has your husband had an assessment of his needs? It sounds as though you need some help and sharpish!!
Sending you hugs and will look again in the morning to see how you are :)
Lindy xx
We’ve just had the assessment yesterday, they are going to do a couple of trial days week after next as M is resistant, hopefully this will go well. I’m really hoping he can go to a day care now and then to give me a break. Just really hit me tonight that I’m really struggling and missing my family. I really want to be a good Nan, and how can I if my husbands going to do this every time we see them. Actually the children are not safe around him!
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
We’ve just had the assessment yesterday, they are going to do a couple of trial days week after next as M is resistant, hopefully this will go well. I’m really hoping he can go to a day care now and then to give me a break. Just really hit me tonight that I’m really struggling and missing my family. I really want to be a good Nan, and how can I if my husbands going to do this every time we see them. Actually the children are not safe around him!

Don't really know what to say but don't allow yourself to become isolated from family or friends especially your children and grandchildren. It is so easy to let this happen but you must not let it happen. You are only 57 and your husband could live a good many years yet so you have to keep your own life. Hope it all goes well and you get to spend time with your family. Sending you good wishes and hugs.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
We’ve just had the assessment yesterday, they are going to do a couple of trial days week after next as M is resistant, hopefully this will go well. I’m really hoping he can go to a day care now and then to give me a break. Just really hit me tonight that I’m really struggling and missing my family. I really want to be a good Nan, and how can I if my husbands going to do this every time we see them. Actually the children are not safe around him!
Glad somethings in the pipeline - although it sounds as though you’ll need more help as time goes on. I too would be concerned about the children’s safety - looking at it from their point of view, they have as much right to see you, as you do them :)
Keep pushing for more help. You all need it....you, M, your children and grandchildren.
Hugs
Lindy xx
 

Philpsie

Registered User
Jan 6, 2016
35
0
Oh Philpsie!
I'm so sorry you're having to deal with this. You say your grandchildren aren't safe. Are you safe? You shouldn't have to continue in such a situation. Social services should do an assessment for your husband - and they should also do an assessment for you as carer. Social services will let you continue caring when they should be stepping in. You'll have to insist on getting help.
Very best wishes.
He’s mostly ok when it’s just him and me, the children are the trigger. Social services asked him if he’d mind people helping, when he said yes he minded they said they can only do a trial as he doesn’t want it. He might not but I do. What if he cuts up rough with them or refuses, is that it?
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Glad somethings in the pipeline - although it sounds as though you’ll need more help as time goes on. I too would be concerned about the children’s safety - looking at it from their point of view, they have as much right to see you, as you do them :)
Keep pushing for more help. You all need it....you, M, your children and grandchildren.
Hugs
Lindy xx
Im so sorry you are going through this. You ARE already a good nan otherwise you wouldn't be so concerned about your grandchildren. You clearly love them and Im sure they love you too. You need to keep them in your life and although your husband is ill, this must not result in alienating them It sounds like you need more help and agree with @Norm
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Sorry pressed send by mistake! ..... I agree with @Normaleila, you need a Carer's Assessment and access as much help as you can. You're not alone - you have friends here who do care. Please, please keep us updated. Sending love and Hugs x
 

highland girl

Registered User
Jul 30, 2017
143
0
Yorkshire
my husband has dementia, he’s no longer able to hold a conversation with me. I’m only 57, I work and up to now have coped on my own.
M (my husband) gets nasty around the grandchildren, we had a party and he got angry and started grabbing the children. The next day he got nasty with my eldest grandson that I was looking after whilst his mum was out, he ended up shoving me so we had to walk the streets until out daughter came home.
I phoned the dementia team and they’ve said we shouldn’t see the children as it a trigger until they find out from the consultant how his meds can be changed. I was told this on Monday, it’s now Thursday night and I’ve still not heard anything! My grandchildren are my life and without my children visiting I’m completely isolated. I’m feeling very depressed and tearful. I don’t know how much longer I can cope with this. I’m finding it hard to put one foot in front of the other, apart from my very close family which I can’t see I feel no one cares. I have friends that don’t bother with me now, I’m so unhappy!
my husband has dementia, he’s no longer able to hold a conversation with me. I’m only 57, I work and up to now have coped on my own.
M (my husband) gets nasty around the grandchildren, we had a party and he got angry and started grabbing the children. The next day he got nasty with my eldest grandson that I was looking after whilst his mum was out, he ended up shoving me so we had to walk the streets until out daughter came home.
I phoned the dementia team and they’ve said we shouldn’t see the children as it a trigger until they find out from the consultant how his meds can be changed. I was told this on Monday, it’s now Thursday night and I’ve still not heard anything! My grandchildren are my life and without my children visiting I’m completely isolated. I’m feeling very depressed and tearful. I don’t know how much longer I can cope with this. I’m finding it hard to put one foot in front of the other, apart from my very close family which I can’t see I feel no one cares. I have friends that don’t bother with me now, I’m so unhappy!


Hi, it’s difficult isn’t it, I was 57 when my husband was diagnosed 4 years ago and you do feel as if your life has come to an end, try not to feel this way, I know it’s hard. It’s difficult with the situation with your grandchildren as you want them to be safe, my oh gets nasty with ours, me and my sons have decided they will still bring them but we keep a close eye on things and have learnt the trigger points. Unfortunately I can never have them on my own now which had been a big disappointment, but it’s the way it is. My oh was put on memantine as well as his Rivastigmine patches and his aggressiveness has steadied but not completely gone. So hopefully when your Ohs medication is sorted it may be fine. Remember with this Illness things are continually changing so what may be a problem now may not be in a few weeks/months. Try to just see them when their parents are there and keep a close watch, see if there are any triggers, the first time with my oh there were tigers on the tv and he was actually trying to get this kids out of the room to safety!!! If their parents are there with them they can remove them instantly you suspect he is turning nasty. My oh has a look on his face and I know I’m in for fun and games if you know what I mean. Keep posting . Xxxxx
 

Philpsie

Registered User
Jan 6, 2016
35
0
Hi, it’s difficult isn’t it, I was 57 when my husband was diagnosed 4 years ago and you do feel as if your life has come to an end, try not to feel this way, I know it’s hard. It’s difficult with the situation with your grandchildren as you want them to be safe, my oh gets nasty with ours, me and my sons have decided they will still bring them but we keep a close eye on things and have learnt the trigger points. Unfortunately I can never have them on my own now which had been a big disappointment, but it’s the way it is. My oh was put on memantine as well as his Rivastigmine patches and his aggressiveness has steadied but not completely gone. So hopefully when your Ohs medication is sorted it may be fine. Remember with this Illness things are continually changing so what may be a problem now may not be in a few weeks/months. Try to just see them when their parents are there and keep a close watch, see if there are any triggers, the first time with my oh there were tigers on the tv and he was actually trying to get this kids out of the room to safety!!! If their parents are there with them they can remove them instantly you suspect he is turning nasty. My oh has a look on his face and I know I’m in for fun and games if you know what I mean. Keep posting . Xxxxx
They’ve said today they are putting him in emergency respite care so his meds can be looked at. I know the guilt will finish me off. I love him and he loves me and what if the shoe was on the other foot, I’m not sure he’d let me go into respite. X
 

highland girl

Registered User
Jul 30, 2017
143
0
Yorkshire
They’ve said today they are putting him in emergency respite care so his meds can be looked at. I know the guilt will finish me off. I love him and he loves me and what if the shoe was on the other foot, I’m not sure he’d let me go into respite. X

Oh I feel for you, I’m going through making a decision on respite at the moment, we’ve just had another assessment as I need help and everyone telling me I need to put him in respite for while, but I’m dreading it, I’m feeling so guilty considering it. Like your oh we have hardly any communication he doesn’t understand what I say to him and can hardly verbalise at all, but I know he’ll know I’m not there. I think we have to try and accept it’s for the best, but how do we except it, I know exactly how you feel. It’s a lonely and sad life, I hit meltdown point last sat night and cried for hours, I felt so alone, we never want to burden others do we? Hang in there. S xxx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
They’ve said today they are putting him in emergency respite care so his meds can be looked at. I know the guilt will finish me off. I love him and he loves me and what if the shoe was on the other foot, I’m not sure he’d let me go into respite. X
Philpsie. I know how very tough this is but - although it wont feel like it now - this is the best thing. I hate cliches but this really is "tough love". He will be looked after and you will all be safe while his meds are sorted. He will also hopefully be assessed or re-assessed. We've all felt that guilt you speak of and know how painful it is but your poor husband is ill and he desperately needs help, as do you. If he had a heart attack, would you hesitate to call an ambulance for him? Of course not. The heart gets damaged so it needs help. The brain gets damaged by Dementia so needs help. He is still at a stage where medication can help and that's good. Please, please don't beat yourself up. You have nothing whatsoever to feel guilty about. Loving someone can mean making difficult decisions but it's precisely because you love him that you need to try and see this can only help your husband and you and your family too. Will you be alone? I'de feel happier if you had a family member or a good friend to stay with you. Wishing you strength at this really, really tough time. It honestly is the right thing to happen. Please keep us posted. With Love x
 

Philpsie

Registered User
Jan 6, 2016
35
0
Oh I feel for you, I’m going through making a decision on respite at the moment, we’ve just had another assessment as I need help and everyone telling me I need to put him in respite for while, but I’m dreading it, I’m feeling so guilty considering it. Like your oh we have hardly any communication he doesn’t understand what I say to him and can hardly verbalise at all, but I know he’ll know I’m not there. I think we have to try and accept it’s for the best, but how do we except it, I know exactly how you feel. It’s a lonely and sad life, I hit meltdown point last sat night and cried for hours, I felt so alone, we never want to burden others do we? Hang in there. S xxx
I know, it’s truly awful, my meltdown was last night too. I said to one of my daughters I feel guilty cos I promised to look after him and she said something very true, she said you are looking after him, you don’t have to be physically there, you just have to do whats best for him. I think that’s very true and I hope that’s how I feel when he goes in but I very much doubt it. I think he’ll be scared on his own . But they will tweak his meds so that will be good. It’s so awful! X
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Oh I feel for you, I’m going through making a decision on respite at the moment, we’ve just had another assessment as I need help and everyone telling me I need to put him in respite for while, but I’m dreading it, I’m feeling so guilty considering it. Like your oh we have hardly any communication he doesn’t understand what I say to him and can hardly verbalise at all, but I know he’ll know I’m not there. I think we have to try and accept it’s for the best, but how do we except it, I know exactly how you feel. It’s a lonely and sad life, I hit meltdown point last sat night and cried for hours, I felt so alone, we never want to burden others do we? Hang in there. S xxx
I'm so sorry; it is a dreadfully sad time for you but had you posted before @Philpsie I'de have responded in much the same way. There will always be someone here who knows what you are going through. Sending love and wishing strength also. Take care and please keep using TP x
 

highland girl

Registered User
Jul 30, 2017
143
0
Yorkshire
I know, it’s truly awful, my meltdown was last night too. I said to one of my daughters I feel guilty cos I promised to look after him and she said something very true, she said you are looking after him, you don’t have to be physically there, you just have to do whats best for him. I think that’s very true and I hope that’s how I feel when he goes in but I very much doubt it. I think he’ll be scared on his own . But they will tweak his meds so that will be good. It’s so awful! X

Your daughter is right, my son says that too, we have to adjust though, as we have throughout this illness, it’s another step and we need to meet it head on. They need the chance to adapt his meds and that’s a good thing, sometimes we just have to try to let go a little bit I suppose. None of us know how we or our pwd is going to cope until we face it. When I broke down the other night it made me realise if I don’t have help soon I won’t be able to keep him at home and that is my intention to have him here as long as possible and to the end if possible, I suppose if that means I have breaks from him then I’ll have to. Please keep in touch and let me know how things go. S xx
 

highland girl

Registered User
Jul 30, 2017
143
0
Yorkshire
I'm so sorry; it is a dreadfully sad time for you but had you posted before @Philpsie I'de have responded in much the same way. There will always be someone here who knows what you are going through. Sending love and wishing strength also. Take care and please keep using TP x

Hi Jezzer, thank you, I’ve seen many of your posts, you are so kind. Sometimes it’s just so hard to except you need help. S xxx
 

Philpsie

Registered User
Jan 6, 2016
35
0
Your daughter is right, my son says that too, we have to adjust though, as we have throughout this illness, it’s another step and we need to meet it head on. They need the chance to adapt his meds and that’s a good thing, sometimes we just have to try to let go a little bit I suppose. None of us know how we or our pwd is going to cope until we face it. When I broke down the other night it made me realise if I don’t have help soon I won’t be able to keep him at home and that is my intention to have him here as long as possible and to the end if possible, I suppose if that means I have breaks from him then I’ll have to. Please keep in touch and let me know how things go. S xx
Thank you, I will do. X
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi Jezzer, thank you, I’ve seen many of your posts, you are so kind. Sometimes it’s just so hard to except you need help. S xxx
It certainly is hard, I agree. I also think asking for help is a strength, not a weakness as we can feel sometimes. We are acknowledging the magnitude of this awful disease and that we cannot do everything ourselves. I think you and @Philpsie are both loving, courageous ladies wanting the best for your husbands, and it's so good you are supporting each other xx
 

Philpsie

Registered User
Jan 6, 2016
35
0
It certainly is hard, I agree. I also think asking for help is a strength, not a weakness as we can feel sometimes. We are acknowledging the magnitude of this awful disease and that we cannot do everything ourselves. I think you and @Philpsie are both loving, courageous ladies wanting the best for your husbands, and it's so good you are supporting each other xx
I find asking for help so difficult, I think I push friends away. I feel I’m in pain and need help but my friend doesn’t even ask how I am so I don’t contact her cos I’m hurt but this just makes me more isolated. X
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
I find asking for help so difficult, I think I push friends away. I feel I’m in pain and need help but my friend doesn’t even ask how I am so I don’t contact her cos I’m hurt but this just makes me more isolated. X
Oh yes, I too have pushed friends away. Then I think they are a bit afraid of contacting me. Could that be the case with your friend? It's so hard to rea ch out when we feel so distressed. How about sending her a brief message? Apologies if I'm "poking my nose in" where it's not wanted! xx