I know should be grateful as some of you seem to have such a hard time but I feel so isolated now my partner does not communicate he goes out in the garden or sits polishing his shoes over and over uses his colouring book and stays completely silent if I have work people in he walks out and goes into the garden some may think silence is golden but it making me feel totally alone and just there to do cooking cleaning washing etc any suggestions I'm getting to the point where even a cold caller on the telephone would be welcome how sad is that!
So isolated
- Thread starter GailE2010
- Start date
I now that feeling, Gail. With OH it's more a tendency to sleep all day and when we do have a conversation it usually goes in circles. Of course, making lunch and then being asked where her sandwich is half an hour later does make it all feel a little futile.
Not sure what I can advise though, TP is a useful place for talking to people with similar problems and there is usually some kind of light conversation going on in the Tea Room. I head out for a walk to clear my head and often drop into the pub for a quick one. No more than one as you need to be sober in this job. Sorry, that's the best I can do, hope someone can give better advice.
Not sure what I can advise though, TP is a useful place for talking to people with similar problems and there is usually some kind of light conversation going on in the Tea Room. I head out for a walk to clear my head and often drop into the pub for a quick one. No more than one as you need to be sober in this job. Sorry, that's the best I can do, hope someone can give better advice.
Hello Gail, does your partner have Alzheimers? Sounds like you both need some help, welcome to Talking Point, there is always someone here day or night to talk to, you really need to have a break from caring, do you have friends and family that support you? You sound very lonely, you must get out do something which you enjoy or you will both get very depressed. I used to take my husband out everyday to stop him getting bored, even if it was only for a walk, would he go to a day care centre, l did try with my husband but he didn't like it. If you can not leave your partner on his own, contact Crossroads they are a charity they helped me, there may not be one in your area, but its worth a try, hope you get some help soon.
Yes he has Alzheimer's but in his world there is nothing wrong he doesn't need help or support because there is absolutely nothing wrong and he doesn't need anyone coming g round he has refused social services won't attend groups and Insists he is fine family members do not help and friends do call sometimes but he ignores them or goes outside
Hi, Gail--
I do wish I could give you some great advice on defeating the isolation, but sadly, I think this is part of the bargain when your Loved One develops Alzheimers or Parkinsons or Lewy Body Disease.
It just goes with the territory. I hope I'm giving credit where it's due, but I THINK it was Scarlett here who coined the term "Midow"--we're caught in an extra dimension, so to speak, where we are married but not to the same husbands we wed. We are in the half-way world of being married but almost widowed, but not quite fully in either world.
Others have shared some ideas. I think what's helping me cope best is sharing here at TP, reading through older threads to learn more about these strange/odd new behaviors in our lives (so I'm not feeling quite so frightened as before).
I find, myself, that friends and family don't really understand or even see what's going on with my husband. Like your experience, he simply avoids the contact. Unless the family member/friend is exceptionally perceptive (few are), this is not recognized even as avoidance, let alone dementia.
Even the doctors can be "spoofed" by the miraculous elevation of intellect that oddly occurs during doctor's visits. Others have mentioned this one, but it does rather leave you feeling strangely alone, doesn't it?
Let me tell you what helps me & maybe some of it will help you.
1. Get a dog or cat. Great comfort here.
2. Read more. Think of books you've always wanted to read, but never had the time to. Get a library card and a Kindle.
3. Write in a journal. Everything. Every day. Take your own life out and examine it fully. See where you need to grow as a person, not just how you can be a "better carer." Look at yourself with fresh eyes. It will actually help you understand not only your situation, but your husband better. I find it helps take away a lot of confusion in my overall life and alleviates the feelings of lonliness/isolation. It's strange, but having your own self for a best friend is strangely comforting. Or maybe I'm just deluding myself : ) Truly, it works for me, maybe it will help you some.
4. Think about ways to help you structure your day, to take some of the isolation away. Strangely, my trips to the grocery store are a welcome outlet, getting to get out a bit (though I get about 5 phone calls from my OH during my 30 minute outing). I only go about once a week, but it's a pleasant break, when looked at that way (rather than a chore to be done).
5. Make friends with some neighbors. I have some elderly neighbors (relative to my own age) & I'll occasionally call them to check up on them & visit a bit by phone. It helps us both feel less "alone."
6. Sometimes, just getting away from your own loneliness is simply a matter of helping someone else. This sounds really, really silly, I'm sure, but I enjoy writing reviews at various sites on the internet, just to help others like I've been helped (things like nutritional supplements, etc.). I occasionally get "feedback" on these & enjoy "visiting" with others this way.
7. When you feel really, really, REALLY filled with loneliness and self-pity, go read the collected thread from the Widowed Carers. Truly, it will give you a perspective you've never considered. I've found that quite helpful and illuminating, myself.
8. Remember your OH is still here with you; I've found that sometimes, by "talking up" to my husband (being encouraging, telling him he looks especially handsome today, etc.) he actually responds by elevating his actions, even if only for the briefest of times. But it makes me feel better and encourages me in this challenging journey.
Wishing you the best and a bit of hope for you, that you can find a path that will help you help yourself.
No denying this is a very hard journey, but you are where you are, whether you want to be there or not. Same for Hubby. Never forget that he would never choose this for you or himself.
Hugs and hope for your happiness and comfort,
Willow Tree
P.S. One more point: never feel guilty or feel "less" for resenting this disease and the position it has put you both in. It's very tough, but you're tougher : )
I do wish I could give you some great advice on defeating the isolation, but sadly, I think this is part of the bargain when your Loved One develops Alzheimers or Parkinsons or Lewy Body Disease.
It just goes with the territory. I hope I'm giving credit where it's due, but I THINK it was Scarlett here who coined the term "Midow"--we're caught in an extra dimension, so to speak, where we are married but not to the same husbands we wed. We are in the half-way world of being married but almost widowed, but not quite fully in either world.
Others have shared some ideas. I think what's helping me cope best is sharing here at TP, reading through older threads to learn more about these strange/odd new behaviors in our lives (so I'm not feeling quite so frightened as before).
I find, myself, that friends and family don't really understand or even see what's going on with my husband. Like your experience, he simply avoids the contact. Unless the family member/friend is exceptionally perceptive (few are), this is not recognized even as avoidance, let alone dementia.
Even the doctors can be "spoofed" by the miraculous elevation of intellect that oddly occurs during doctor's visits. Others have mentioned this one, but it does rather leave you feeling strangely alone, doesn't it?
Let me tell you what helps me & maybe some of it will help you.
1. Get a dog or cat. Great comfort here.
2. Read more. Think of books you've always wanted to read, but never had the time to. Get a library card and a Kindle.
3. Write in a journal. Everything. Every day. Take your own life out and examine it fully. See where you need to grow as a person, not just how you can be a "better carer." Look at yourself with fresh eyes. It will actually help you understand not only your situation, but your husband better. I find it helps take away a lot of confusion in my overall life and alleviates the feelings of lonliness/isolation. It's strange, but having your own self for a best friend is strangely comforting. Or maybe I'm just deluding myself : ) Truly, it works for me, maybe it will help you some.
4. Think about ways to help you structure your day, to take some of the isolation away. Strangely, my trips to the grocery store are a welcome outlet, getting to get out a bit (though I get about 5 phone calls from my OH during my 30 minute outing). I only go about once a week, but it's a pleasant break, when looked at that way (rather than a chore to be done).
5. Make friends with some neighbors. I have some elderly neighbors (relative to my own age) & I'll occasionally call them to check up on them & visit a bit by phone. It helps us both feel less "alone."
6. Sometimes, just getting away from your own loneliness is simply a matter of helping someone else. This sounds really, really silly, I'm sure, but I enjoy writing reviews at various sites on the internet, just to help others like I've been helped (things like nutritional supplements, etc.). I occasionally get "feedback" on these & enjoy "visiting" with others this way.
7. When you feel really, really, REALLY filled with loneliness and self-pity, go read the collected thread from the Widowed Carers. Truly, it will give you a perspective you've never considered. I've found that quite helpful and illuminating, myself.
8. Remember your OH is still here with you; I've found that sometimes, by "talking up" to my husband (being encouraging, telling him he looks especially handsome today, etc.) he actually responds by elevating his actions, even if only for the briefest of times. But it makes me feel better and encourages me in this challenging journey.
Wishing you the best and a bit of hope for you, that you can find a path that will help you help yourself.
No denying this is a very hard journey, but you are where you are, whether you want to be there or not. Same for Hubby. Never forget that he would never choose this for you or himself.
Hugs and hope for your happiness and comfort,
Willow Tree
P.S. One more point: never feel guilty or feel "less" for resenting this disease and the position it has put you both in. It's very tough, but you're tougher : )
Just wanted to say how much I liked your post, Willow Tree. Useful, practical ideas to bring comfort in a very dark situation. Thanks.
Hi Gail
We live in a prison without bars ! My problem, yes my O/H sleeps a lot but cannot put a sentence together ,and calls things by different names and then gets frustrated when I get it wrong. She will ask for a spoon but when I get the spoon it is not what she wants-this time she meant the marmalade ! but it is not consistent.
it drives me spare having to try and guess what she really wants.
Of course I cannot leave her for any length of time so pay a charity who send lovely ladies to come and sit with her.
But why complain -reading other postings I am at stage one- the worst is yet to come
My ardent wish is that she dies first; is it wrong to think like that ?
We live in a prison without bars ! My problem, yes my O/H sleeps a lot but cannot put a sentence together ,and calls things by different names and then gets frustrated when I get it wrong. She will ask for a spoon but when I get the spoon it is not what she wants-this time she meant the marmalade ! but it is not consistent.
it drives me spare having to try and guess what she really wants.
Of course I cannot leave her for any length of time so pay a charity who send lovely ladies to come and sit with her.
But why complain -reading other postings I am at stage one- the worst is yet to come
My ardent wish is that she dies first; is it wrong to think like that ?
I don't think it's wrong. And I suspect it's surprisingly common, though rarely admitted, especially to friends and family.
Long before I found TP, I had a heart to heart with a local Alzheimer's Society representative about my mum and confessed, in floods of tears, that I wished it could just be 'all over'.
I'll never forget the relief I felt when she told me that she'd heard that so many times, and it didn't mean I was a bad person, just an honest one.
Hello Frederick, no you are not wrong, it would be a happy release for my beloved husband to die, after 56yrs together having a wonderful caring husband, now he doesn't know where he is, doesn't always know who l am or family and friends. It would be such a relieve for him, and me l hate this awful Alzheimers, it has robbed me of my loved one.
Guilty as charged. 
Yes a Midow, or Midower is still married, not widowed, but living in limbo. And not only were my prayers granted, and John died before me, but I see nothing wrong in that. In fact, it is completely unselfish to hope that the person you've adored for decades is spared from losing you, and facing even more bewilderment and uncertainty in their already confused lives.
We were together nearly half a century, I looked after him for 12 years with AD, who was the unwanted intruder in our lives, and his last 6 months or so was in a Care Home, when I just couldn't cope any longer. And I was glad that when he died, my lovely man was oblivious to the man he'd become, and was now free from pain and turmoil.
I've read of other Carers, who have said that their loved ones lived happy lives for years in Care Homes, but that wasn't the case for us. John died 2 days before his 76th birthday, which was on Christmas Day, and was the youngest in the Home, with several other residents in their late 80s and 90s.
He couldn't walk, talk, eat or had any idea who I was, and would look at me with terror in his eyes. Would I have wanted him to live even longer with this hateful disease? No. There's no Alzheimer's in Heaven.
Yes a Midow, or Midower is still married, not widowed, but living in limbo. And not only were my prayers granted, and John died before me, but I see nothing wrong in that. In fact, it is completely unselfish to hope that the person you've adored for decades is spared from losing you, and facing even more bewilderment and uncertainty in their already confused lives.We were together nearly half a century, I looked after him for 12 years with AD, who was the unwanted intruder in our lives, and his last 6 months or so was in a Care Home, when I just couldn't cope any longer. And I was glad that when he died, my lovely man was oblivious to the man he'd become, and was now free from pain and turmoil.
I've read of other Carers, who have said that their loved ones lived happy lives for years in Care Homes, but that wasn't the case for us. John died 2 days before his 76th birthday, which was on Christmas Day, and was the youngest in the Home, with several other residents in their late 80s and 90s.
He couldn't walk, talk, eat or had any idea who I was, and would look at me with terror in his eyes. Would I have wanted him to live even longer with this hateful disease? No. There's no Alzheimer's in Heaven.
It is not wrong to hope and pray that your OH dies before you do, Frederic! Scarlett is right! I also have hoped for the past 9 years that I would not die before my husband. If I did he would have been placed in a care home with no one to monitor his care, be there for him in those rare moments of clarity, or just love and accept him the way he was. I even set things up, legally and financially, so that he would receive the best care possible should I die first. But even "the best care possible" needs to be monitored carefully. You know your OH better than anyone else. Yes, she drives you crazy, that's par for the course, but you are her advocate, her voice, her protector. If you died first she would not have that.
My husband confessed to our GP once that he had thought of suicide. He was just enough "with it" at that time to realize what was happening to him. Now he is near death from a global decline of his vascular dementia. I will miss him terribly but will be so very relieved, for his sake, that he is no longer suffering.
My husband confessed to our GP once that he had thought of suicide. He was just enough "with it" at that time to realize what was happening to him. Now he is near death from a global decline of his vascular dementia. I will miss him terribly but will be so very relieved, for his sake, that he is no longer suffering.
No it's not wrong
Hi Fredrick no it's not wrong how I hate this disease and all it stands for today been so so bad tantrums mixed up his tablets then yelled at Me locked and unlocked the door a hundred times slight exaggeration there i ended up crying yet again i so out of my depth and yes like you this is only the beginning thank god for cigarettes and if my dr tells me to stop once more i will make him have a day with my oh
Hi Fredrick no it's not wrong how I hate this disease and all it stands for today been so so bad tantrums mixed up his tablets then yelled at Me locked and unlocked the door a hundred times slight exaggeration there i ended up crying yet again i so out of my depth and yes like you this is only the beginning thank god for cigarettes and if my dr tells me to stop once more i will make him have a day with my oh
I can thoroughly understand your frustrations. I am at the point are giving up. My OH went to bed at 8.30 last night and didn't get up till gone 2.00pm. He has since just mimed to me that he wanted some food and that is the total of my communication with anyone today. The frustration of my life just ebbing away sitting here waiting for nothing is driving me to distraction.
Sent from my iPad using Talking Point
Sent from my iPad using Talking Point
I always advocate making as many happy memories together, whilst you can, however small they may seem, because it's then something to look back on, with pleasure. I remember when our "happy memories" consisted of going to one of numerous garden centres for a coffee, and when I asked John if he'd like a toasted tea cake, he was able to answer yes, or no, because he knew what they were, and whether he wanted one.
We could also discuss the various plants, and he knew their colours, and remembered a lot of the names. A few months later, the names and colours of the plants, and the concept of whether he was hungry enough to want a toasted teacake, and even what it was, were a distant memory.
I can well remember that awful feeling of utter isolation, when conversation was zilch, friends were thin on the ground, and I welcomed a cold caller, just to hear someone elses voice.
We could also discuss the various plants, and he knew their colours, and remembered a lot of the names. A few months later, the names and colours of the plants, and the concept of whether he was hungry enough to want a toasted teacake, and even what it was, were a distant memory.
I can well remember that awful feeling of utter isolation, when conversation was zilch, friends were thin on the ground, and I welcomed a cold caller, just to hear someone elses voice.
I totally agree about holding to happy memories, Scarlett. Listening to a beautiful wee song the other night, I remembered back to when I met my better half and how she was quite a tonic at a hard time in my life. Worth remembering on the days when she is hard work or distant.
and how she was quite a tonic at a hard time in my life. Worth remembering on the days when she is hard work or distant.
