My darling, I know, I really know. I am so sorry. I am so sorry about your dad. It is beyond heartbreaking what we go through, it is monstrous. You know we understand. Keep talking to us. warmest, Kindred.
Things not to say to me - rant warning!
- Thread starter Life
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Oh darling, I know, I know. Journey SUCKS as does the term dementia navigator .. We sometimes seem surrounded by such ... incompetent responses. Gxxxx
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Hello I’ve just read your post, and can so feel for you. I’ve recently had the ‘you need to be strong’ response from a friend, and it left me feeling frustrated and failing. We do the very best that we can, and even someone else’s experience of a similar disease, cannot replicate ours. Without sounding trite, I have a lovely cat, who sits with me - no judgement, just there. He seems to understand better than most humans. And you’re so right about a hug - they speak volumes. You are in my thoughts.
A friend said the other day 'Why don't you get your son to help out more so that you can take time off'' as if it was something that he should be doing.
I answered absolutely truthfully that 'I don't want my 25 year old son to have to look after an 88 year old man with dementia, I won't allow it'
He does do stuff like mow the lawn for dad and other little household jobs but I really did not like the presumption that I should pass some of the care onto my son just for a day off. He has his own life and I do not want him caring for dad. My decision, no else's.
I answered absolutely truthfully that 'I don't want my 25 year old son to have to look after an 88 year old man with dementia, I won't allow it'
He does do stuff like mow the lawn for dad and other little household jobs but I really did not like the presumption that I should pass some of the care onto my son just for a day off. He has his own life and I do not want him caring for dad. My decision, no else's.
I totally agree with you. My son is much older, nearly 42, and his career is probably close to its height as long as he keeps going flat out. It sticks in my throat to accept his offers of taking time away from work to help me out by looking after his father.
People aren't sure what to say but some feel that they have to say something to give a little support I suppose,I look after my mother and have neighbors asking often for 18 months they have seen 2 carers arrive at the house 4 times a day and they must think my mother is gravely ill,so I have to explain it's because she can't weight bare so needs 2 carers to roll her while pad changing.
They said what a shame it is,but I don't have the time to look at life like that we are at the place that we find ourselves and I deal with things on a day to day basis,it would make me sad if I stopped for too long feeling sad for my mum.
On another note I met an old neighbor that had moved a few streets away and her husband had dementia for years quite early,she said that he had a died a few years ago which I was unaware of,I feel bad that I had avoided them when I used to see them together as I felt I didn't know what to say to John,that makes me feel bad.
They said what a shame it is,but I don't have the time to look at life like that we are at the place that we find ourselves and I deal with things on a day to day basis,it would make me sad if I stopped for too long feeling sad for my mum.
On another note I met an old neighbor that had moved a few streets away and her husband had dementia for years quite early,she said that he had a died a few years ago which I was unaware of,I feel bad that I had avoided them when I used to see them together as I felt I didn't know what to say to John,that makes me feel bad.
I know how you feel. When someone says I’m managing so well they don’t know about the tears of exhaustion. When they say he seems better today, they don’t about the bed being changed yet again and the pile of stinking laundry I’ve just done. I’m not coping, I don’t even think I’m living anymore,I’m just about surviving in a world I no longer understand or want to be part of.
Sweetheart, I so understand, all sympathy to you, all fellow feeling. I only got through by writing 100 lines each night: I must endure.
The world is very difficult and unsafe at the moment, or so it feels. Also everyone expresses their opinion on everything and us with loved ones with dementia seem to be fair game for intrusive and tactless comment. Is there anyone who can help? In our case, I only got help after a bad accident, an admission to a and e and a best interest statement that my husband could no longer be cared for at home. But did I have to get to the state of mental and physical breakdown? Please don't let this happen to you: I am still recovering. Keep talking. with love, Kindred.xxxx
Don't know how to stop it happening to you? Go to your GP. Tell him how down you are, the thoughts you are having, that you are not coping, your mental welfare is at risk. Tell the social workers the same thing. Tell everyone that if you do not get help you will not carry on, you cannot. It is beyond you. Do not downplay it at all, tell it like it is. Please do this. You do not want to get as ill as I did, I am still like a prisoner, cannot go more than a mile from home without getting dizzy and sometimes passing out - and my husband has been in a nursing home for seven months now.
I know it seems a big step to take, I know that but we, on TP, can help you. You cannot struggle like this. Geraldinexx
Thankyou for your time. I can’t go to the doctors or talk to him on the phone, my hus band is always there. We’ve been referred to social services but apparently this can take weeks.i know I’m weak, I know others manage, but I dread getting up each day. I can’t put him in a home, I promised him that I never would do that. I know I’m probably making myself I’ll again, I had a breakdown several years back, but I can’t bear the thought of deserting him. I no longer sleep, I listen for his every move. He fell and strained his chest muscles and is in such pain.my family occasionally drop in and think he’s looking well, or not too bad. They don’t know of the hours of loneliness and the longing to talk to someone. I don’t feel like a wife any more, and sometimes he doesn’t even know that I am..xx
Darling, you are not weak. I understand, I really do. I promised my husband I would never put him in a home and yet it has remade our relationship, (see my thread, please don't throw me away in my partner has dementia).
You do not have to desert him but you may not be able to sustain being together like this. Write a letter to your doctor.
Even if you do nothing now, I just want you to have heard these options. I know you are so weary and down and honour you for carrying on. The truth is that it will go on like this unless you can act in some way.
Just think about it sweetheart, you really do not have to suffer like this.
with love, Kindredxxx
He has been asleep for the last two hours, I should have welcomed the time to myself. But no, I washed 5he bathroom floor, again, did some washing, third lot today, threw away the meal I had done I’m for lunch because he didn’t fancy it now, washed up, sorted out the online shopping delivery, got his tea ready and made a cup of tea. Now he’s awake and wants to know how I am getting home. Is it all worth it? Xx
No of course not, but at the moment you are trapped in it and not able to see outside it sweetheart. The situation is like this because there is not enough money to help us and a terrifying increase in people with dementia. This means we are trapped into inhuman situations that feel like torment, as yours does. Please try to get word to your GP somehow, sweetheart.
with love, Kindred.xx
Mammajan, there comes a time when a pwds wants must be supplanted by their needs, I think you have probably reached that stage. You certainly don’t want a carers breakdown ( been there, done that). What would happen if you became ill, had to go to hospital, say?
Caring does not stop if they go into a care home. It just changes, and that can take a bit of adapting too. But then there are people there 24/7. There is a laundry who will not notice that this is the third load for that person today! They won’t blink an eye if food is not eaten, and none of this will be your responsibility.
Please start looking around at care homes, look on it as a benefit for you
Caring does not stop if they go into a care home. It just changes, and that can take a bit of adapting too. But then there are people there 24/7. There is a laundry who will not notice that this is the third load for that person today! They won’t blink an eye if food is not eaten, and none of this will be your responsibility.
Please start looking around at care homes, look on it as a benefit for you
But what do I tell him, and the family. He’ll think I don’t live him, the family will think I selfish and uncaring. And they will probably all be right.
Hello @Mammajan , so many of us will be able to empathise with your feelings right now. I quit work recently as I hit a brick wall mentally and could not cope any longer. I am now on antidepressants, poor and doing things I don't want to do. Thankfully, talking to the doctor did help - I cried buckets, it all came out - and the antidepressants have definitly lifted me out of the mire.
Wishing you well xxx
Wishing you well xxx
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