margherita
Registered User
You guessed right. Thanks for your understanding . Hope your holiday will go well. We need a break in our frustrating routine.
Two years to get this bad. What now?
- Thread starter AL60
- Start date
Hi. I could say that over the last couple of days I'm on something of a roll. Yesterday, a great day out, today a trip to the cinema with son in law and his dad. . My daughter stayed home with mum. It's proved to me that it doesn't have to be much to make a big difference. If only it could be like this more often. Perhaps now it will be
I'll be even less frazzled . Best not get too carried away. I'll just live for the day. Al
I'll be even less frazzled . Best not get too carried away. I'll just live for the day. Al
Amethyst59
Registered User
Sounds good to me too, Al. I think the brighter weather cheers us all up, and just seeing a way to get a bit more help, and time out lifts the spirits. Did you watch a good ‘blokey’ film?!
Thank you, I do know and understand how hard it is to keep the mind elsewhere. I really do. In the nearly five years my husband was at home and I was sole carer and desperate for normal conversation, I wrote a novel. Just several sentences a day and then I told myself my mind had been elsewhere. Dementia will obsess us otherwise. I have been a psychotherapist for many years and one of my main learnings is that life is a struggle to find somewhere worthwhile to put the mind. Dementia is one of the biggest challenges to that struggle. Thank you so much for posting, it helps my loneliness too.
Dear @kindred, what a wonderful post. “Somewhere worthwhile to put the mind”. YES. You’ve pinned down the dementia carer’s central problem so precisely and so clearly. Your words have made it into my secret iPhone diary that I keep under Notes!!! I’ve been struggling with trying to define this issue let alone express it. My GP said the other day that, once a problem can be defined, there can be realistic hope of a solution. Without its being defined, there can be no hope of that.
Thank you so very very much. It is so good to read this. There is something about dementia that compels the mind to keep thinking about it. I think it's the combination of the outrageous, the unbelievable and the unpredictable. Thinking about it, even when we don't have to can become almost an addiction. It is such a struggle to put the mind elsewhere. No one can do this for us, though. Today, on the way to Oh nursing home, I diverted and looked at beautiful horse chestnut trees and the wild violets around, and the general beauty of spring. Now I know I have put my mind elsewhere even for a short time! So very good to hear from you. Thank you so much.
Grahamstown
Registered User
You are all so right. We visited friends this morning because they understand that mornings are best so we go for coffee and brownies. The two men are very old friends of his and they have played golf for years but now he has given it up. The level of short term memory loss is changing for the worse all the time now and I am constantly being taken aback, but with the TP information behind me I can cope without reaction and just answer the question over and over again. As someone else said, what would be bizarre, you accept without question. We have had a glorious morning with our friend’s spring garden looking at its best and then a lunch out. The sadness is that lurking behind this is the shadow of dementia which our friends can see now and it upsets them very much. I realise how condioned I have become when others are more upset than I am.
Yes, I do agree. Thank you. I think superhuman resilience and skill is demanded of us, it is outrageous really, that this situation exists and there is so pathetically little help for us. I keep wondering what to do about that, but then have so little energy left at the end of the day to do anything. It's so hard to be dealing with all this and be a campaigner at the same time. One day, perhaps, I could put my psychotherapy skills to supporting others in some way. When I was heading towards what they charmingly call a carer breakdown, one of the SW said would I see a counsellor, and I explained I am a senior psychotherapist and want help not talk. I am rabbiting on - but it is so good to talk to you. Thank you for posting.
Grahamstown
Registered User
@kindred your posts are so uplifting that I think you are recovering some of your equilibrium because if I remember rightly you have had a long arduous time caring for your husband and have moved on to a different way of caring and loving him. You are so supportive on the forums that I think you must have some of your old mojo back. Now we all try to help each other sometimes only by showing what we are coping with, which varies so much from person to person. I know that I would not have been able to survive without a crisis during the early period of this year when the odd behaviour was driving me mad. Now I know how to deal with it, most of the time, because sometimes I still get very exasperated and cross. I said a while ago that it is me who has to change because my husband cannot, he is on a path that I cannot follow and I have to keep him safe for as long as I can. Thank you too.
Oh thank YOU and those lovely words of yours ... keep him safe for as long as I can. Thank you, absolutely yes. My OH kept me safe for our married life, and our son. I know he thought the male role was to keep the family safe and I so so profoundly respect that. So yes, it is our job now to keep them safe. And thank you so much for what you said about getting my mojo back, it is coming. AND I think it is largely since joining these forums because until then I was leading a double life. Smiling and pretending all was well and of course I could cope because well, what is the alternative - and then back home to a life of imprisonment and despair, communicated to no one. Now, I am beginning to feel one person again and I believe so much that what you see is what you get is the healthiest position mentally. This is so much what TP offers. We can be completely who we are and what we are dealing with. Thank you with all my heart, thank you.
margherita
Registered User
I won't forget those words of yours.
Thanks for writing them
Littlebear
Registered User
I don't get on TP very often as there's so little time. I was looking here tonight as I'm feeling particularly down. We are currently on holiday, a place we visit often & where we know many people but I just feel so lonely. In the past there's always been so much to talk about but now I have nothing to add to the conversation; my life is so narrow, so boring, I have nothing to say, no new experiences to share. My day consists of mundane things; my only conversation consists of my OH asking the same questions endlessly, if I do try to start even a simple conversation with him he immediately asks one of his questions (he has a repertoire of 5 or 6). I've lost my old self, I seem only defined by my carer role. All my old hobbies have fallen by the wayside; many friends have drifted away - I just feel I've been consumed by the need to care & I hate it. I don't want this life for me or my husband; there's no fun, no laughter just the endless drudgery of it all whilst my poor husband becomes increasingly anxious and struggles with all aspects of his life. It breaks my heart & the saddest thing is there is nothing anyone can do. Alzheimers has stolen our lives.
Oh I am so sorry to read this. The loneliness is dreadful, and the void where adult interaction used to be yawns so devastatingly. Where I live it is four am and I am awake waiting for my son’s plane to land. He is coming for five days. My OH puts on a great show. My son will leave again with no real idea of what my daily life has become.
Please know you are not alone. Soon others will wake, elsewhere in the world, with words of comfort that will help more than I can do. But I’m sending you hugs and loving thoughts from afar. C. xxx
I know, I really do and thank you so much for posting. It is so very lonely, I know. I used to whisper conversations to myself, still do sometimes. It actually helps. With other people, I used to try to talk about the news, not that that's wonderful, but it took the focus away from dementia. With you all the way, please keep posting, talk to us here. I know it helps my loneliness.
I find that when I do get the chance to chat with others, I tend to overdo it? It's as if there's a tide of conversation to get out, while I get the chance. I do say to people that I am sorry if I'm talking too much and most seem understanding (those that know our situation, at least).
Prior to my wife getting dementia, she had for many years suffered from varying levels of depression and anxiety. This all seemed to follow a very bad period of post-natal depression after the birth of our second son. So she had never been that keen on socialising and thus we only had a relatively small circle of friends (most of whom "vanished" when she developed dementia).
As I've posted on other threads, I cultivated a new social life for us when I saw where we were headed, adopting a local pub for the first time ever and was fortunate to welcomed by a group of folk who understand and are very supportive to us both. This has not only helped to keep her involved (although I think at times, she wonders who all these strange people are?) but has become my weekend sanctuary.
I hope you enjoy the rest of your holiday as best as you can and I wish you well.
Phil
I do say to people that I am sorry if I'm talking too much and most seem understanding (those that know our situation, at least).Prior to my wife getting dementia, she had for many years suffered from varying levels of depression and anxiety. This all seemed to follow a very bad period of post-natal depression after the birth of our second son. So she had never been that keen on socialising and thus we only had a relatively small circle of friends (most of whom "vanished" when she developed dementia
).As I've posted on other threads, I cultivated a new social life for us when I saw where we were headed, adopting a local pub for the first time ever and was fortunate to welcomed by a group of folk who understand and are very supportive to us both. This has not only helped to keep her involved (although I think at times, she wonders who all these strange people are?) but has become my weekend sanctuary.
I hope you enjoy the rest of your holiday as best as you can and I wish you well.
Phil
Another day, another post. Nothing changes, not for the better anyway. I'm not going to say I've had enough, because I haven't. Well, i have, but you know what I mean . I know there's a way to go and im in for the duration. Yes she has her violent outbursts , though they're usually short lived and she does still know all her family. Though I have found a photo recently with all of us on it with a name childishly written above each one. But she's a completely different person to the one I knew from even a couple of years ago. So I'll carry on doing the best I can. Al.
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