This is a wonderful site. I have found so much sympathy & reassurance from people who I will never meet. Just to be able to talk to others in a similar situation makes you feel that you are not alone. Vascular dementia took my dear SIL after 5 years of suffering & she passed away 2 weeks ago very peacefully with us. I really don't know what I would have done without all the support from friends out there. Keep posting & you will find strength to carry on even on the darkest day. love & hugs. Liz
Feeling alone
- Thread starter Trisha4
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This is a wonderful site. I have found so much sympathy & reassurance from people who I will never meet. Just to be able to talk to others in a similar situation makes you feel that you are not alone. Vascular dementia took my dear SIL after 5 years of suffering & she passed away 2 weeks ago very peacefully with us. I really don't know what I would have done without all the support from friends out there. Keep posting & you will find strength to carry on even on the darkest day. love & hugs. Liz
Hi Trisha,
I know exactly how you feel.
I am in the same situation as you, except it is my Wife with Alzheimer's.
Sometimes you feel as if you could rip your hair out.
It would help for you and Hubby to go to an Alzheimer's café.
I know it is no consultation but I will be thinking of you.
Kind Regards
Pete.
Not alone
Hi Trish, I have just logged on and read your post. I do not log on very much but I do read a lot of the comments and my thoughts are with you. I noticed you live in Yorkshire, I do too, and my husband was diagnosed over 3 years ago with Alzheimers. Not sure where about in Yorkshire you live, or if under data protection we can find out? I think the forum is excellent and sometimes it is good to actually meet and talk face to face. I have just been on the phone 1.5 hours with a family member, who is very supportive, but doesn't really understand. Really hope you are feeling stronger today?
Hi Trish, I have just logged on and read your post. I do not log on very much but I do read a lot of the comments and my thoughts are with you. I noticed you live in Yorkshire, I do too, and my husband was diagnosed over 3 years ago with Alzheimers. Not sure where about in Yorkshire you live, or if under data protection we can find out? I think the forum is excellent and sometimes it is good to actually meet and talk face to face. I have just been on the phone 1.5 hours with a family member, who is very supportive, but doesn't really understand. Really hope you are feeling stronger today?
Feeling isolated
Dear Trisha so know how you feel. Do take advantage of every bit of help out there. I go to an Alzheimer's carers group and another carer group and being with people in similar situations helps me cope. It's a day at a time basis for us. Thinking of you.
Dear Trisha so know how you feel. Do take advantage of every bit of help out there. I go to an Alzheimer's carers group and another carer group and being with people in similar situations helps me cope. It's a day at a time basis for us. Thinking of you.
I know how you feel
Hello Trisha
My husband is fine in the daylight hours but he was waking me up every few hours at night. So now I give him 2 paracetamol and a St John's wort just before bedtime,which give me sometimes 7 or eight hours sleep a night.
He does not take any prescribed medication,but takes Citrate magnesium, B12 1000ug, Vitamin D3 and a multivitamin.
I have learned to accept that my husband will not improve, but he has not had a stroke and he is not in pain so I am grateful for that. Warm regards
Hello Trisha
My husband is fine in the daylight hours but he was waking me up every few hours at night. So now I give him 2 paracetamol and a St John's wort just before bedtime,which give me sometimes 7 or eight hours sleep a night.
He does not take any prescribed medication,but takes Citrate magnesium, B12 1000ug, Vitamin D3 and a multivitamin.
I have learned to accept that my husband will not improve, but he has not had a stroke and he is not in pain so I am grateful for that. Warm regards
Hi and welcome, you are never alone! There are some wonderful people on here that are very supportive and can relate to everything you're going through. I know for me it always helps to commiserate with somebody who can understand how I feel. It's hard sometimes for me to read the caregivers comments, as I am the patient and my wonderful husband has such a hard time sometimes.
Please know that you're never alone... Lots of love and hugs coming your way!
Grateful and blessed-Donna
Hello Trisha, my thoughts are with you!
This is the first time ever that I have posted a reply, your words expressing simply that you feel so alone struck a chord with me because this is an emotion I feel so frequently.
My husband has Alzheimer's , he was diagnosed two years ago but I have been aware of his illness for the past eight years. I have always shared everything with him, love, thoughts, feelings and even a sort of confident independence where we trusted each other to have the freedom to do our own thing on occasions. That intimacy of sharing has gone now and this is what makes me feel alone; it is hard for others who have not experienced this loss to understand that this is such an all encompassing feeling, a deep and lonely place to be! However, I know that I can lift and be lifted out of the isolation by quite simple things because life is for living and it can bring such joy.
I get a great source of help in an emotional form from family,friends and the various organisations that run cafes and forums like this. Chatting and sharing, seeing how other people cope or struggle brings a mutuality of warmth and comfort. I know this is no substitute for what seems to be lost but frank and open chat certainly helps me feel better and I get comfort in knowing someone else knows how I feel!
I hope you are feeling just that bit brighter after using this forum.
I am definitely a "glass half full" person and have a very positive and determined nature but there are times when i need, like you, some reassurance,and people's warmth and openness is what picks me up. The mutual exchange of thoughts and practical ideas is a powerful source of support.
Thank you Trisha for prompting me to contribute to the forum, up till now I have been a reader only!
This is the first time ever that I have posted a reply, your words expressing simply that you feel so alone struck a chord with me because this is an emotion I feel so frequently.
My husband has Alzheimer's , he was diagnosed two years ago but I have been aware of his illness for the past eight years. I have always shared everything with him, love, thoughts, feelings and even a sort of confident independence where we trusted each other to have the freedom to do our own thing on occasions. That intimacy of sharing has gone now and this is what makes me feel alone; it is hard for others who have not experienced this loss to understand that this is such an all encompassing feeling, a deep and lonely place to be! However, I know that I can lift and be lifted out of the isolation by quite simple things because life is for living and it can bring such joy.
I get a great source of help in an emotional form from family,friends and the various organisations that run cafes and forums like this. Chatting and sharing, seeing how other people cope or struggle brings a mutuality of warmth and comfort. I know this is no substitute for what seems to be lost but frank and open chat certainly helps me feel better and I get comfort in knowing someone else knows how I feel!
I hope you are feeling just that bit brighter after using this forum.
I am definitely a "glass half full" person and have a very positive and determined nature but there are times when i need, like you, some reassurance,and people's warmth and openness is what picks me up. The mutual exchange of thoughts and practical ideas is a powerful source of support.
Thank you Trisha for prompting me to contribute to the forum, up till now I have been a reader only!
My doctor described living with a person with dementia as "a long bereavement" and he is right. They are still alive so you can't grieve properly but gradually they are slipping away and the person you knew is going. Support from groups such as this and the local ones near you can be a lifeline. I am now involved on the committee for our local one and I do find it helpful. To meet and chat to people who know what it is like is essential. Friends and extended family care but just don't appreciate how stressful it is. My husband smiles and laughs with his carers and I see a glimpse of the former man but he no longer knows me or our children. Physically he looks much the same and he is still able to walk around but the bright, intelligent mind is gone. Over the past few years our children have raised nearly £40,000 for Alzheimer's research and that is their way of coping. Being positive in the hopes we can defeat this disease eventually.
It's a hard slog, and likely one you will have to endure mostly solo.
I have viewed my own mother cope with my father's illness these past 6 or so years, and for a few years, I lived-in to assist.
What you will find is like-minded people here (mostly women) and a vast amount of support and information. This is useful in that it give you solace that you are not alone.
It doesn't mean you will not have to put "real" things in place though to give you a life outside of just "caring".
How you combat this is entirely based on your own likes, experiences, skills, interests and such-like. Hobbies, interests, they may have faded or you may have to re-engage with some to help along the way. TV / DVD's is not a solution as this rots the brain, pardon the pun - I find TV like bread, it's a short term solution but ultimately a poor excuse for a proper meal, if you follow my drift!
I think maintaining a routine, adding interest as oft' as possible, and i'm talking about everyday, going on weekly visits places, coffee mornings, anything to get you two out and about. This becomes far more important over the years. Do not take the easy route, get out, even if it's just to have a coffee at Tesco's in the late morning.
If you don't look after you, your needs, you will not be a good carer; ergo you need to ensure things happen every day both for you and your husband. This becomes increasing difficult and complex the longer the disease takes. You might find your life seems to close in on you, some so-called friends drop away, so be-it. Keep all social engagements, seek out new ones, new groups to join, new activities to do, meals out and the like.
By putting these things in place early on will both condition other people at these places to your situation (this will make you more comfortable around them also) and your husband will be more comfortable returning back week-on-week (or similar) to these places and people. This will become ever more important as the years take their toll on you both, sorry, but best you prepare for the likely scenario ahead.
I hope this is of some practical help, I'm a bloke, so don't major on the whole "sympathy" stuff, for me it's the practical things I am more concerned with.
I have viewed my own mother cope with my father's illness these past 6 or so years, and for a few years, I lived-in to assist.
What you will find is like-minded people here (mostly women) and a vast amount of support and information. This is useful in that it give you solace that you are not alone.
It doesn't mean you will not have to put "real" things in place though to give you a life outside of just "caring".
How you combat this is entirely based on your own likes, experiences, skills, interests and such-like. Hobbies, interests, they may have faded or you may have to re-engage with some to help along the way. TV / DVD's is not a solution as this rots the brain, pardon the pun - I find TV like bread, it's a short term solution but ultimately a poor excuse for a proper meal, if you follow my drift!
I think maintaining a routine, adding interest as oft' as possible, and i'm talking about everyday, going on weekly visits places, coffee mornings, anything to get you two out and about. This becomes far more important over the years. Do not take the easy route, get out, even if it's just to have a coffee at Tesco's in the late morning.
If you don't look after you, your needs, you will not be a good carer; ergo you need to ensure things happen every day both for you and your husband. This becomes increasing difficult and complex the longer the disease takes. You might find your life seems to close in on you, some so-called friends drop away, so be-it. Keep all social engagements, seek out new ones, new groups to join, new activities to do, meals out and the like.
By putting these things in place early on will both condition other people at these places to your situation (this will make you more comfortable around them also) and your husband will be more comfortable returning back week-on-week (or similar) to these places and people. This will become ever more important as the years take their toll on you both, sorry, but best you prepare for the likely scenario ahead.
I hope this is of some practical help, I'm a bloke, so don't major on the whole "sympathy" stuff, for me it's the practical things I am more concerned with.
I'm here to help
Warm regards. John
Hi Trisha. You are not totaly alone , though I do fully understand what you are going through right now after 18 years of this experience with my sweet wife.
Warm regards. John
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Oh Trisha dear - Welcome!
Here, you will find masses of friendly support and advice from others who are travelling along the same stony path as yourself.
There are so many carers here who will nod wisely to themselves, while recognising your feelings of loss, and dare I say it, bereavement.
Your husband is still in there you know - even if only in flashes. If you treasure those moments of clarity, (and they will keep coming) they'll help to anchor you to the man he once was.
I, too, look after my dear, Alzheimer's devastated husband - so I have a pretty good idea of how it feels to realize that the man you have loved for possibly a lifetime is fading away from you.
I have found it helps me to kiss him when he is asleep - it gives me comfort, because he looks and feels exactly as I remember him , and I hope it brings him some comfort too.
If you can cry, do! I know not everyone can, but if you can, why not find somewhere well away from him, and have a really dramatic howl. Please don't feel ashamed; I bet most of us here have done it on a regular basis! I find a good cry lowers the level of stress a little, leaving me able to go back to him with a smile .
It's Hell I know - but you aren't alone. You'll find advice and friendship here from all those who have been there, done that, and given the T shirt to Oxfam.
You are not really helpless; very few women are - but you might need to learn a little more about how to be strong. Talking point helped me to come to terms with what was happening to us; and I hope it will be of help to you too.
Hugs,
Hi Trisha, I'm new too and made my first post a few nights ago when I was at the end of my tether and consumed with guilt. Unfortunately I posted it in the wrong place. Like you I'm losing my husband - in many ways I've already lost him. I feel so alone living here in our rural idyll with no neighbours and a hundred miles from our nearest family, and no husband to share or chat things over with.
I've read the replies you've had here and people have been so empathetic and understanding that it's encouraged me to have another go. So thank you for posting. xx
h
Hi trisha
I am also new at this and know exactly how you feel. I feel heartbroken at the change in him and also helpless.so I am now trying to make the most of every day and trying to live one day at a time.it is difficult but you are not alone.i really hope you can hang on to that thought .
I will be thinking of you
Jawuk... Welcome and I'm glad that you found somebody else that was new to relate to. I was always told in another program to not to compare but to relate. I am the patient, so the gear caregivers remarks are always heartbreaking to me. That I may be doing some of these things to my wonderful husband.. But I get up every day and try to be the best person that I can be that day. Today started wonderfully and turned out it wasn't one of those days. Frustrated, aggravated, and also feeling alone! Wonderful husband had to come home from work, I was in hysteria.
I'm better now and going out with my daughter for a massage tonight. Somebody told me once that I could start my day over anytime I wanted. The good news is I forgotten most of what I was hysterical about, LOL ... Sometimes just got a laugh at yourself.
I send love and big (((hugs)))
Blessed and grateful, Donna
Please don't feel alone Trisha.
It is horrible but don't feel alone. I know what you mean about feeling helpless though.
It is horrible but don't feel alone. I know what you mean about feeling helpless though.
What wise words - I am losing it though and can't stop crying. A friend is calling for coffee later and we are going out and are in the early stages of vascular dementia. Our daughter in law will be skyping later. I know we are blessed and have lovely friends but it is not having a person to talk to that is awful.
Livewire...Come on to TP when you need someone to talk to and you will never feel alone again. It is lovely that you and your friend get out together. Join Dementia groups, Memory Café's, Singing for the Brain groups and get out as much as you can. You will find the information for these groups on the Alzheimer's Society website.
You can apply for a CEA http://www.ceacard.co.uk/ this gets a carer ( other adult ) in with you for free. I cost me £4.63 for my husband and I to get into the cinema on a Monday. Afternoons are best because the cinema is quiet and he can concentrate on the film.
My husband is 63 and has had Alzheimer's for 2yrs and it was me that cried bucket loads of tears. Now we are out nearly every day and meeting people with Dementia in their lives and it has helps us both to get on with living.
Take care, Carol
You can apply for a CEA http://www.ceacard.co.uk/ this gets a carer ( other adult ) in with you for free. I cost me £4.63 for my husband and I to get into the cinema on a Monday. Afternoons are best because the cinema is quiet and he can concentrate on the film.
My husband is 63 and has had Alzheimer's for 2yrs and it was me that cried bucket loads of tears. Now we are out nearly every day and meeting people with Dementia in their lives and it has helps us both to get on with living.
Take care, Carol
