i dont think i have ever felt so lonely or alone! i have friends and family around for support and yet i feel such utter loneliness in my head.The lack of any real conversation or connection with my oh and the feeling of no idea about the future and what it will bring. I look ahead and see years of the same in store for me hope this is a just a bad state i am going through and i can find a more posative attitude to it all not like me at all to allow things to drag me down this much
such loneliness
- Thread starter tuffydawn
- Start date
I hope you will have some episodes with your OH which may give you some hope there may be bright spots on the horizon.
The loneliness and feeling of isolation are should destroying. I found my relief here on Talking Point and at relative`s support groups.
The loneliness and feeling of isolation are should destroying. I found my relief here on Talking Point and at relative`s support groups.
Sorry things are so painful and hard right now tuffydawn, try not to look too far ahead. Can you arrange any respite so that you can get a little time with family or friends and have some time for you to do something you enjoy? Don't be alone whilst TP is here.
Love
Sue
Tuffy, is this a new situation you are in? I have found that roughly a year at a time things change, move on, worsen or improve. What they don't do is stay the same. Are you able to go to some Alz Soc groups with him? Meeting other people you can talk to, have a laugh with or phone when you are low makes such a difference. I also found this helped when the time came to move on to day centres and if and when it is a move to a care home then I expect that too to be easier.
Having said all that I don't underestimate the misery of being lonely within a couple. It is frustrating and entrapping but it will change.
Having said all that I don't underestimate the misery of being lonely within a couple. It is frustrating and entrapping but it will change.
I know what your going through Tuffydawn, as I am the same at this present time. Its Good Friday and I could be with my Daughter and grandchildren at seaside but Mum as been up since 4.30 crying and has had her coat on to go home. She is tired and so am I.
Have you thought of respite, I am thinking down those lines now there is only saw much we can take then we have to recharge our batteries otherwise we are no good for anyone. Life will get better keep strong.xx
Have you thought of respite, I am thinking down those lines now there is only saw much we can take then we have to recharge our batteries otherwise we are no good for anyone. Life will get better keep strong.xx
It's a horrible feeling, and one that you wouldn't wish on your worst enemies. The future may be short or long - none of us have any idea. I know some people have said that the final years with their loved ones, were easier than the early or middle stages, but this wasn't the case for me and John. But we had a "plateau" period, mid-way through, where things stayed the same for a couple of years, and we were able to make some memories.
But there is no easy solution, when your soul-mate of half a century changes, and the person who could read your mind, and you theirs, disappears. I can't offer a solution, just my sympathy and understanding. It was vital for me to find a Day Centre for John, because I was so tired, and he would have me up nearly every night, and then he'd drop off to sleep, but I couldn't.
So I slept for a few hours, whilst he was at the Day Centre, and that gave me the strength to get through the rest of the day and night.
Hi tuffydawn. I find the loneliness one of the hardest things to cope with, exactly as you describe it. I am never physically alone as Mick doesn't like me out of his sight (which drives me crazy at times) but I don't have a partner and I'm not a wife any more, I'm a carer. Conversation isn't possible.
I think we will have our dips over the years but I hope you feel more positive at times too. We can always 'chat' on here. It makes me feel less alone. Positive thoughts and hugs coming your way from me x
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I agree loneliness is the hardest thing to cope with. I have my Mum living with me now, she would have loved to live here, but the nasty dementia as stripped us both of that pleasure. I don't have a conversation with her anymore as she dose not understand unless I go into her world. At least we can rant and rave on TP knowing we are not a lone and there are people in the same situation.xx
Hi. I know it's easier said than done but I find it helps to live in the present which is not something I used to do. Considering the possible futures is too enormous for me and too unpredictable. Although we know where Alzheimer's leads, the rate of progression and actual stages seem to vary enormously.
I also find changes are slow and therefore become more acceptable as they happen.
I try to think of the 'can do' things that Mick can still do or we can do together; then the 'could do' things that he or we could do if certain things were in place or with additional support. This highlights the kind of support you need.
Mick is Middle stage now and we are currently in Panama visiting family.
I have found the greatest support from the Alzheimer's society - memory cafes, befriending, side by side pilot and Alzheimer's support person.
Keep posting, keep asking, keep as positive and healthy as you can. You're never alone on here.
Hugs and positive thoughts from me x
Sent from my iPad using Talking Point
One of the things I found useful was to get OH into daycare one day a week soon after diagnosis. It was such a break. I could meet up with friends and NOT talk dementia. There was also an Alzheimers Society meeting where, as soon as we appeared he was whisked off to activities and I could talk to the others. I could not have managed otherwise.
Day care days increased as he got worse, but he was used to going, so it wasn't such a problem.
Day care days increased as he got worse, but he was used to going, so it wasn't such a problem.
Hmm....I know dad gets very lonely about losing mum who has alzheimer's. Obviously I do what I can but I know I can never replace mum. I take him out with my friends sometimes and with family but I know I can never give him what he really wants which is mum back. It is so sad and I don't think there is an answer. Talking on here is useful though.
Mum and dad do have a dog. Of course the dog can never replace mum either (!) although due to mum's declining condition the dog is better behaved hee hee! Sorry but if you don't laugh you cry. It was nice to walk in the lounge earlier today though and take the micky out of dad because he had this big soppy dog on his lap! Even he had to laugh!
Look after yourself okay, and try to keep doing social things with your family and friends as, at the very least this will take your mind off of things for a while and stop you dwelling on the way things were, although you are allowed to do this too sometimes of course, it is only natural.
Sent with love, M x
Mum and dad do have a dog. Of course the dog can never replace mum either (!) although due to mum's declining condition the dog is better behaved hee hee! Sorry but if you don't laugh you cry. It was nice to walk in the lounge earlier today though and take the micky out of dad because he had this big soppy dog on his lap! Even he had to laugh!
Look after yourself okay, and try to keep doing social things with your family and friends as, at the very least this will take your mind off of things for a while and stop you dwelling on the way things were, although you are allowed to do this too sometimes of course, it is only natural.
Sent with love, M x
I miss being able to chat about things that worry me its all down to me and i make all the decisions. We do go out everyday though and talk to different people and luckily he can still play bingo but often misses numbers. Somedays we go round the shops and have some lunch do this twice a week. I never stay in and this seems to keep in stimulated he can read a book and play games on a Nexus 7 tablet. His favourite hobby is his X360 games console loves the shooting games.
I have two sons one lives quite near to me i see them from time to time but dont bother them a lot they have there own lives to lead.
We are all going to Malta in June so thats still good getting away for a break.
I still enjoy his company and up to now i havent joined any groups we did try an Alzheimers cafe but found it a bit flat. I try to keep things normal for now he was diognosed 18 months ago and is still early stages. He takes Aricept at night these have helped a lot.
I have two sons one lives quite near to me i see them from time to time but dont bother them a lot they have there own lives to lead.
We are all going to Malta in June so thats still good getting away for a break.
I still enjoy his company and up to now i havent joined any groups we did try an Alzheimers cafe but found it a bit flat. I try to keep things normal for now he was diognosed 18 months ago and is still early stages. He takes Aricept at night these have helped a lot.
We are now in our tenth year from formal diagnosis, probably twelve to fifteen, from when OH knew she was heading for dementia. In the first years we kept up hiking, theatre, symphony concerts, and going to functions. We still do even though it is clear all understanding has gone but it's also clear that there is an understanding that we are part of what is going on. I encourage conversation and ask that people behave as if she is participating that way she looks interested and keeps awake. I keep fit by hiking with a group and going to the gym by hiring respite that we are familiar with. I found that joining the Alzheimer's research volunteer network gives me a personal distraction, contact with both researchers and people affected by dementia. That way I believe I am keeping fit and sane and my aim is to continue to care at home to the end.
I was thinking the exact same thing today. I'm very lonely and sometimes think I will become like this myself as I see long days and evenings stretching ahead with someone who cannot concentrate properly and has little or no conversation . And this is only the start for me. Will I be able to cope as things progress? I hope I shall be able to be as strong as so many of you on here....
I feel like you too, tuffydawn, and just can't seem to do the wise thing of taking it all a day at a time. My OH was diagnosed a couple of years ago and Aricept seems to be keeping things at bay. Sometimes he's quite normal and just like he was, and sometimes he can't hear, can't seem to find things - even when directly in front of him, can't seem to fit words together to make sentences. BUT we haven't discussed what's wrong with him since we left the consultant's room. He obviously doesn't want to talk about it, so I don't feel that it's my place to bring it up. Our doctor seems to play the 'patient confidentialty' thing so won't discuss it all with me, and I'm left marooned with an unwell man, pretending there's not a vast elephant in the room. We have two adult daughters but they are so busy with work and children that they haven't much time to listen to their Mum moaning, though they are generally sympathetic. But I feel completely alone here with our horrible 'secret' and the thought that it can all only get worse. It's not really possible for me to go to support groups without lying about where I'm going, which I don't want to do. Talking on here is the only thing I do, and I do find it helps - so thank you kind people.
Dear Morgan
First of all, I love your user name. Could have chosen it for myself…
Secondly, the thing about lying. I found it very hard at the beginning, but soon learnt the hard truth (helped by TP) - you have to do it, and you really are lying to the disease, and not the person. You have to do it, because you have to stay as sane as possible and as healthy as possible in order to do all you want to do for your OH, and to do all the other things you have to do. And you need support, and people to talk to, and just to get away from time to time. And you don't want to upset your OH, more than anything else, so you tell lies. At least that's what I do!
Thirdly, keep on coming on here. There's loads of help and support and love...
From my own experiences, it's vital to ensure your GP will discuss things with you. After all, if hubby isn't competent enough to talk for himself, you're the one who has his best interests at heart.
John had AD for 12 years, and, once he was prescribed Aricept, his illness was on a plateau for a few years. But when I needed him to discuss things, either with him, or anyone else, he was adamant there was nothing wrong with him, and would have the most terrible rows with me after, so, when I had to talk to a "professional", I prepared a statement "To Whom It May Concern".
On this, I listed how things had changed, which I updated regularly, and on a separate sheet I listed all his medication. Then, when we visited the GP, or a doctor at the hospital (he had several other illnesses), or a Social Worker visited, I made sure they had a copy of the Statement, so that I didn't have to explain anything.
When we visited the Memory Clinic, I would go to reception, and ask if Dr XYZ could see this, prior to us being called in, and this meant they didn't need to ask me questions, where my replies would distress John.
I would stick to the maxim "go with the flow" as far as talking to John about things, because he truly believed there was nothing wrong with putting his car keys in the freezer, and accusing me of taking them, the same way as he truly believed I was having affairs with all and sundry.
It's an unenviable task, being a carer of someone with AD, and personally, I don't think people in the Real World, who haven't experienced this first hand, have a clue what our lives are like. Thank goodness for TP
Thank you so much Alicenutter - love your name too btw ! You're quite right, a small lie to prevent further distress must be better than hurting him. I think I just needed someone to say it, so thank you
From my own experiences, it's vital to ensure your GP will discuss things with you. After all, if hubby isn't competent enough to talk for himself, you're the one who has his best interests at heart.
John had AD for 12 years, and, once he was prescribed Aricept, his illness was on a plateau for a few years. But when I needed him to discuss things, either with him, or anyone else, he was adamant there was nothing wrong with him, and would have the most terrible rows with me after, so, when I had to talk to a "professional", I prepared a statement "To Whom It May Concern".
On this, I listed how things had changed, which I updated regularly, and on a separate sheet I listed all his medication. Then, when we visited the GP, or a doctor at the hospital (he had several other illnesses), or a Social Worker visited, I made sure they had a copy of the Statement, so that I didn't have to explain anything.
When we visited the Memory Clinic, I would go to reception, and ask if Dr XYZ could see this, prior to us being called in, and this meant they didn't need to ask me questions, where my replies would distress John.
I would stick to the maxim "go with the flow" as far as talking to John about things, because he truly believed there was nothing wrong with putting his car keys in the freezer, and accusing me of taking them, the same way as he truly believed I was having affairs with all and sundry.
It's an unenviable task, being a carer of someone with AD, and personally, I don't think people in the Real World, who haven't experienced this first hand, have a clue what our lives are like. Thank goodness for TP
Thank you Scarlett 123. I have an appointment with the doctor this week and will try to get her to outline how she sees the relationship between her, my OH, his illness and me going in the future. And I think that your idea of creating a document is brilliant, and I will be doing that - thank you so much for the idea. My OH went into hospital last year for couple of days to have half knee replacement. neither of us mentioned the Alzheimers, but since they were aware that he takes Aricept (which of course isn't prescribed for anything else) I assumed that they would know. In the morning when I went to see him the nurse looked troubled, said he'd tried to pull out all his drains and drips in the night and did he, by any chance, have some sort of a problem. I refrained from shouting some very rude words - how could trained nurses have missed that ? But your idea of a short, clear 'To Whom it may concern' document is brilliant and will hopefully save us embarassment and difficulties in the future
