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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
Hope you had a wonderful time. Xxx
I did thanks a lot, @AliceA - we even met a film star at Bristol Airport and my little granddaughter had her photo taken with her.
Saoirse Ronan - who is filming with Kate Winslet in Lyme Regis at the moment. Saoirse was seeing her boyfriend in Edinburgh!
New grandson is lovely, spent loads of time with him, and the family - just great. Shame to come home if you understand....
Quite understandable, you will have lovely memories to hold on too. I saw a baby on TV and felt quite besotted. It took me back to our own ones. Xxx
I'm so glad you've managed to get up to visit your grandson.
thank you @jugglingmum - it was super, and I hope it will not be too long before I see them again......not sure how I will manage it, but I will be working on that!
I’m fighting the reverse of your experience. My wife gets up early and dresses completely, hat , coat, gloves, shoes, all ready to go out. When I ask where would you like to go she says she doesn’t know. So I say nor do I so we sit and have this daily frustration of not know where to go. When I do suggest somewhere she hasn’t a clue where it is even if we’ve been there the day before. So this tests my already rapidly disappearing patience and I lose it once again. Today we needed to go to the doctors at 09.30. She’s ready at 07.30. She need to provide a urine sample. Without going into too much detail this turned out to be an impossible task. I shout and get angry which is not helpful but my reserves of patience are at an all time low.
I been divorced before so escaped bad times. In my life I’ve always seen better times ahead but now there’s no escape from dementia. No matter if you have people to help, respite time or other resources we are always left with OH to look after at the end of the day. The way I see it is that none of this stops until one of us passes on.
My Dr said to me a couple of years ago that there are two ways out of this for me...... for me to pack my bags or for one of us to die - that really makes the future seem bright doesn't it?
Yes, I understand, I was in that position a year ago. I thought that it would have to be me passing on if only I could do it in such a way that my OH was instantly taken over, as it were and looked after ...I was at that point.
I'm telling you this because sometimes when we feel at our most despairing and trapped, the situation becomes literally impossible. In my case, my OH had a bad fall, hit his head, had to go into hospital for three weeks. The ambulance men said to me, get him into residential, you can't do this ... the doctor said, he's not coming home ... the ward nurse said, wherever he's going he's not coming back with you again and the social worker helped me find what has turned out to be a loving caring home. Yes, I am self funding and will be stripped of hard won savings in joint names. Others had a chance to see that what I was trying to do had become impossible at home. It took three or four nurse, carers to help him stand etc and I had been doing it alone.
Obviously I am not recommending this way out but sometimes, if a thing is impossible, we need to say so. Goodness knows what kept me from speaking up.
I know how you felt Kindred. I have tipped a few times this week. My health has hit a low, my concern is that I am here to care at best or advocate if I cannot care. I am no saint but I do feel so fiercely protective.
The one morning Day Club a week is a real hit though. This helps tremendously.
The trouble is it is hard to say what is the answer. More support given as a right would help.
Places we could stay for a short break at a reasonable cost.
Good to see you back posting, Geraldine I hope that you are recovering.
Last week one of our drivers, sounds as if we have a large staff, told me the story that his Irish mother told him.
She said if you all put your troubles on the table when you leave you would choose to pick up your own.
I think there is some truth in that.
Just spent an age cleaning the bath room - he goes in and pees in the newly polished sink........ I give up, but at least it was not worse!
Oh give me strength from somewhere. My wife just doesn’t see the importance of changing her underwear from one day to the next. I’ve tried to be reasonable and explained my feelings and told her how it upsets me and, to be honest but privately, quite disgusts me to a point. I’m then expected to cuddle up, be satisfied when she dribbles a bit of water on her head and then says well go get another woman. I’ve never wanted another women. I just want someone who is cleaner. She is now sulking and I’m fed up with it all.
Sorry , but I think you are fighting a losing battle! before my husband went into his care home he refused to change his clothes or have a wash and also didn't understand that he should wee in the toilet not on the carpet! now he's in the care home he wears pull ups but is still weeing anywhere even though they take him to the toilet every 2 hours. Take care Dutchman and count to 10. Lx
@Dutchman my dad takes himself off to the bathroom every night for a wash, he goes in, comes out a minute later saying 'well I have had a wash' No he hasn't, not at all, the sink is dry, the soap is dry, he has not even turned the tap on but he truly believes he has had a wash.
I bet you are fed up with it all - it just goes on and on doesn't it? It has taken me over 2 years to even begin to get my head around things here. The only comfort I can give you, is that she doesn't know that her standards have slipped, she doesn't know (probably) that there are standards.
Every day there is something that makes me realise I live in a strange, surreal world - and we have to venture out of that world. I wish there was some affection with my OH but there is absolutely nothing, and I feel really quite abandoned.
But on the plus side, I went today to the local airfield, with my daughter and her 3 year old. We sat outside in the sun, watching small private planes coming and going, and to the 3 year olds delight we saw 3 helicopters as well. It was a cheap and lovely time, and we did indulge in some cheesy chips and shared a piece of cake !!
@Duggies-girl when i tell my husband I am going to wash his hair he looks at me with a grimace. Does not believe that people wash hair every week .
Yet will shave up to 10 times a day
Guilt is such a heavy burden we carry. Do we all feel like our soul is being sucked out of our body and feel guilty for feeling that way? I'm new here and finding life difficult since my MIL moved in last September. It is extremely difficult, she is uneducated and childlike so conversation is limited to tv shows. She not a grateful person and is quite bitter and unpleasant (unless you entertain her constantly, which is exhausting). She criticises everyone on tv or out in public in a derogatory way. My hubs, her son has to work away - he has to earn - so I am alone 5 days of the week. I work part time from home, which means she will be in a mood or possibly crying when I have been away working for 30 min. It's hard living with so much negativity. We are unsung heroes, remember that!
Very very hard caring for someone with whom you have little in common - stay on here and vent your feelings on here - TP has been a lifeline for me.
My OH has so much in common with me when we met 8 years ago - but it has all slipped away with this awful disease....
It’s strange that you mention the criticism. My wife only has to see someone and notice something and they are awful or nasty and she doesn’t like them and these comments are said out loud. I’ve told her off on many occasions but, as we know, reasoning is impossible and a waste of time.
Guilt is also a waste of time because it achieves nothing but making us feel rubbish. And why should we feel guilty anyway because dementia turns everything upside down and none of us are experts in any of this. If there’s one thing I’ve learnt in the last 4 years is that we need to be extremely kind to ourselves and hate the condition not the person.
Dutchman, you are right about guilt, it takes energy that could be used on more positive activities. To care for anyone we need to care for ourselves too, you are right to remind us to be kind to ourselves. We are all doing our best.
Hi Rosebush and all.
Positive...washed her hair this morning and clean underwear. Small battles and all that.
I went to see some friends yesterday on my own for an hour so I took a chance but fortunately she stayed on the sofa at home fast asleep. I was surprised when they said’ why should you feel totally responsible for your wife, it shouldn’t be just down to you, your family equally have a responsibility to lend a hand’. Now whilst I see why they think like that I don’t things are equal. I’m her husband and we said we’d take care of each other when we married. I know these promises are difficult when pushed to our limits with dementia but I can’t abandon her now even when I wish I was on my own at times.
It highlights the difference between being in dementia and looking at it from the outside with a different perspective. I sometimes wonder how others would handle all this. I hope they never have to.