Hi. I have been meaning to post several times since Monday but for some reason I haven't somehow had the will or the energy to do it. It's been a long week with lots of washing to get through. She's really been getting into some awful states. A couple of days ago she went into the downstairs toilet and called out to ask who had made such a mess on the floor. Then came out absolutely covered, i had to get her undressed and into the shower and all she could do was complain about the mess our daughter had made. Always someone else. I don't think we're talking of incontinence, it's more of a coordination thing. Whatever it is it isn't easy. I don't feel as though I've anything positive to post tonight. I just keep thinking it can only get worseI sometimes think what a strange and alien world she must feel she's living in.
Two years to get this bad. What now?
- Thread starter AL60
- Start date
Hi. Once again,thanks for the replies. It can be a lonely journey so it's good to post, it's often the nearest I get to normal conversation. Anyway. I've got some interesting news about the Christmas jumper. I have an awful feeling she might have another favourite. Mickey mouse pyjamas from asda. I bought them on line a couple of nights ago. We went to collect them this afternoon, within minutes of arriving home she was wearing them. At bedtime i went upstairs to see if she wanted anything, the Mickey mouse pyjamas from asda were put away in her wardrobe and she was wearing old pyjamas. I think she now thinks they are going out pj'sthe are nice though. She's been a rather difficult person to get on with these last couple of days,, that's a polite way of putting it. In fact she's been horrible, mainly to me. But she did improve when she got those new pj's. I'll have to go and get some more.
It's gone quiet on the respite front, but I've a feeling something will be happening very soon. I'm hopingto have an evening out next Tuesday, a good family friend has volunteered to OH sit for a couple of hoursroll on Tuesday!
The kitchen saga is still ongoing, though today work started early and finished late afternoon. Just one days work has made such a difference, it's still going to go well into a fifth week, who knows, tiling and flooring could well take it into a sixth week! If I can get thirty years out of this new kitchen ill be happy. Ill also be posting as Al90. So, if you see someone pushing a shopping trolley around asda, wearing Disney pj's and leopard print slippers, just smile and give a thought for meAl. Goodnight.
. At bedtime i went upstairs to see if she wanted anything, the Mickey mouse pyjamas from asda were put away in her wardrobe and she was wearing old pyjamas. I think she now thinks they are going out pj'sthe are nice though. She's been a rather difficult person to get on with these last couple of days,, that's a polite way of putting it. In fact she's been horrible, mainly to me. But she did improve when she got those new pj's. I'll have to go and get some more.It's gone quiet on the respite front, but I've a feeling something will be happening very soon. I'm hopingto have an evening out next Tuesday, a good family friend has volunteered to OH sit for a couple of hours
roll on Tuesday! The kitchen saga is still ongoing, though today work started early and finished late afternoon. Just one days work has made such a difference, it's still going to go well into a fifth week, who knows, tiling and flooring could well take it into a sixth week! If I can get thirty years out of this new kitchen ill be happy. Ill also be posting as Al90
. So, if you see someone pushing a shopping trolley around asda, wearing Disney pj's and leopard print slippers, just smile and give a thought for meAl. Goodnight.Brings to mind the movie of the Big Lebowski where the dude goes out to the grocery store in his slippers and bathrobe. Love the image of you and OH in ASDA. Take care.Hi. Once again,thanks for the replies. It can be a lonely journey so it's good to post, it's often the nearest I get to normal conversation. Anyway. I've got some interesting news about the Christmas jumper. I have an awful feeling she might have another favourite. Mickey mouse pyjamas from asda. I bought them on line a couple of nights ago. We went to collect them this afternoon, within minutes of arriving home she was wearing them
It's gone quiet on the respite front, but I've a feeling something will be happening very soon. I'm hopingto have an evening out next Tuesday, a good family friend has volunteered to OH sit for a couple of hours
The kitchen saga is still ongoing, though today work started early and finished late afternoon. Just one days work has made such a difference, it's still going to go well into a fifth week, who knows, tiling and flooring could well take it into a sixth week! If I can get thirty years out of this new kitchen ill be happy. Ill also be posting as Al90
Hi, AL60 today didn't start well OH in a bad mood from the start, I asked him if he wanted to go out but all I got was a grunt! So to distract him I said can you help me change the bed, couldn't believe it when he said ok and his mood changed so we both got showered and went to town again( anything for a quiet life) Everything was ok till this afternoon when we got back from taking the dog a walk and he decided to go walkabout I phoned my daughter and she said she would drive round and look for him, but I could tell she wasn't very happy anyway a neighbour found him and bought him back I phoned my daughter to tell her and got told off for letting him out!!!! I think my children think I've got nothing better to do than watch OH all day, they should try it. Sorry for moaningx
Thats family. They don't deal with it 24/7 Therefore they cannot have any idea of what it is like.You are not moaning you are doing very well by the sound of it. With my husband he never wanted to leave the house. Had all sort of bits and pieces to ~"play with". including the grand childrens toys. In some ways it was possibly better like that ,than wanting to go out all the time. But I became so isolated. I had the shopping delivered. Bought all presents on line or gave them money. I had 2 hours a weeks to go somewhere but never new what to do with myself. I think I became a problem to myself. My lovely husband is in a nursing home now.x
Thank you and I do hope this is working out well, sweetheart. Is your life better now? I am in same situation as you and trying hard not to be as you so poignantly put it, a problem to myself. Thank you so very much.
Hi ,and good morning to all.
I also am in the same situation as you and am also getting along trying to be brave and problem free and it's working ....not all the time but my hubby is safe and cared for ..
I always keep up to date with AL60 and many more and feel everything as it's running the course not knowing the outcome .
24/7 is the only way to know what we as carers go through..Much lovexx
Thank you so much. Safe and cared for is all we can hope for. Bless you for posting.
I wish you all well. Yes my husband is as good as I can hope for. As for me I do try to enjoy my life when not visiting him. But I find myself becoming ever more emotional. I don't know why. When it was his birthday last week I couldn't read his cards. Just fighting back the tears. And anyway he hadn't got a clue that the cards were for his birthday. Come to that I don't think he could make out what was going on. He did enjoy the fuss though.!! We have to be strong and not just for the one we love. We have to be strong for our children and grandchildren. That way they won't feel the misery that we do. So we keep going and try to be "normal" as we can. What else can we do. I wouldn't wish dementia on anyone. Love to you all.xxx
Absolutely Casbow. What else can we do. We have to be strong to protect, I so so agree. Thank you very much.
Hi. An early one today. I've left it a few days a few days this time in the hope that I'd have some news on the respite. I'm afraid no news whatsoever. Only one visit from a lady from one care home last Friday. I'll be in touch on Monday morning, were her last words. She may well just have said, the cheques in the post or , yes, well have your kitchen finished by the weekend, just failed to say which weekend Well, yesterday afternoon at four o'clock we recieved yet another visit from the clinic nurse and her assistant. They went on at length to tell me it was beginning to look like the respite wasn't going to be happening any time soon. At least not this side of sixty five. Is there nothing for the suffering carers of early onset dementia patients in this area? It seems none of the care homes around here are willing to take her. It's fine for her to stay in my care 24/7 but our clinic staff are concerned that she may kick-off and trash the place, their words not mine. So it's ok for me to live with it then. . The next plan of action is to tweak her medication to try to reduce her anxietycan i have some of that? They also mentioned a sitting service, then followed up with,,, there may be a considerable wait,, there is a long waiting list. Well, i could have told them that, as far as i knew I'd been on it already for the best part of eighteen months. My, I have woken up in a grumpy one today with good reason. Its allowed. As per usual, my oh took the suggestions of the clinic nurse on board, smiled and agreed with all the ideas put forward. Until those ideas and suggestions were processed in her mind then i was left for the rest of the evening to suffer the consequences. This really can't go on, I can't go on, I know that, the clinic staff know that and my GP knows it too. Yet what happens, that hamster wheel of ideas going round and round, same old same old, nothing changes except for the declinei n my wife's condition and seemingly my health too. Sorry for downloading my grumpiness on to you this morning but it feels so good just to let it all out. Thank goodness for talking point.
On a completely different subject. The kitchenNo, it still isn't finished. On a positive note, it does now at least look like a kitchenand everything works but there is at least another weeks worth of work yet to be done. All the mess of the work and the different people coming and seemingly more often, going, you could be right thinking it's adding to the stress. Not so. To my oh the kitchen is just another room to walk through to get from one end of the house to the other, a passage from the East wing to the West wing. To me, all the work going on just gives me something else to think about, a distraction, someone else to talk to. Anyway, there's movement downstairs now, she's been up and about for half an hour or so. It's another good day weather wise, so, time to face up to another long day. No amount of sunshine can brighten my day, so I'll go downstairs now, say, hi, how are you, then wait for the next little thing to upset her, probably the visit from the admiral nurse at lunchtime. My wife doesn't seem to like her either. Come to thinkof it, she doesn't seem to like anyone, so perhaps I i shouldn'tbe taking it so personalreally must go now, so, good morning and have a nice day. Al.
Well, yesterday afternoon at four o'clock we recieved yet another visit from the clinic nurse and her assistant. They went on at length to tell me it was beginning to look like the respite wasn't going to be happening any time soon. At least not this side of sixty five. Is there nothing for the suffering carers of early onset dementia patients in this area? It seems none of the care homes around here are willing to take her. It's fine for her to stay in my care 24/7 but our clinic staff are concerned that she may kick-off and trash the place, their words not mine. So it's ok for me to live with it then. . The next plan of action is to tweak her medication to try to reduce her anxietycan i have some of that? They also mentioned a sitting service, then followed up with,,, there may be a considerable wait,, there is a long waiting list. Well, i could have told them that, as far as i knew I'd been on it already for the best part of eighteen months. My, I have woken up in a grumpy one today with good reason. Its allowed. As per usual, my oh took the suggestions of the clinic nurse on board, smiled and agreed with all the ideas put forward. Until those ideas and suggestions were processed in her mind then i was left for the rest of the evening to suffer the consequences. This really can't go on, I can't go on, I know that, the clinic staff know that and my GP knows it too. Yet what happens, that hamster wheel of ideas going round and round, same old same old, nothing changes except for the declinei n my wife's condition and seemingly my health too. Sorry for downloading my grumpiness on to you this morning but it feels so good just to let it all out. Thank goodness for talking point. On a completely different subject. The kitchen
No, it still isn't finished. On a positive note, it does now at least look like a kitchenand everything works but there is at least another weeks worth of work yet to be done. All the mess of the work and the different people coming and seemingly more often, going, you could be right thinking it's adding to the stress. Not so. To my oh the kitchen is just another room to walk through to get from one end of the house to the other, a passage from the East wing to the West wing. To me, all the work going on just gives me something else to think about, a distraction, someone else to talk to. Anyway, there's movement downstairs now, she's been up and about for half an hour or so. It's another good day weather wise, so, time to face up to another long day. No amount of sunshine can brighten my day, so I'll go downstairs now, say, hi, how are you, then wait for the next little thing to upset her, probably the visit from the admiral nurse at lunchtime. My wife doesn't seem to like her either. Come to thinkof it, she doesn't seem to like anyone, so perhaps I i shouldn'tbe taking it so personalreally must go now, so, good morning and have a nice day. Al.
I am so sorry, Al. I know what you feel like when you realize there is no way out.
I am lost for words.
Don't worry, we'll both survive, I'm sure this is only a low point on that roller coaster ride
Al.
You are one of the more positive and strongest people I have ever known.Don't worry, we'll both survive, I'm sure this is only a low point on that roller coaster ride
I hope we will all survive, but I would also like to be able to live in its full sense. Am I asking too much?
Have a reasonably good day, Al.
I too am lost for words @AL60 and only think gloomy thoughts. What would the authorities do if you get sick. I know that if anything happened to me, and I could easily have another heart attack, then the children would have the burden of dealing with my OH. If there is nobody else to take up the reins then SS have a duty of care. We are all filling in for the dire situation our health and care is in. You are a wonderful person with your stoicism and care.
It is so horrible not to be free to worry about one’s health for one’s own sake, but to have to worry about it because of the effect a bout of anything unpleasant would have on the life of the person being cared for, or on one’s children.
Oh gosh, I so know this one. I had this situation for four years. Please could I ask you to look at the thread we're short, we're sharp but we're out there on this forum. I feel I have to start doing something to raise our plight. Hope you don't mind me asking. all sympathy for your situation, I was always terrified my son would have to step in and care, I had to care for my mum, know what it does to family life. Thank you.
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Hi. I was looking at that thread when my tablet shutdown due to overheating, appropriate regarding the subject. Ill post again later when i can see the screen properly
. Only place i can be alone is the garden in full sun.AlHi. I'm going to start by saying today has not been a good day. This morning all seemed well, I certainly didn't do or say anything to provoke her. I took my time having my first cup of tea of the day, let the plasterer in, showered, dressed then the carer arrived, oh refused a shower, had medication then settled down to watch her favourite corrie catch up. What could possibly go wrong. No idea but something certainly did. Out of nowhere she started shouting and screaming that she wanted her tablets to make her feel better. I then spent thenext hour playing dodgeball with a heavy metal medication box. I felt safe in the knowledge that at least she couldn't open it. I was wrong. At least tomorrow when the carer calls I won't be looking for the key, no need. Anyway, while this was going on I thought it a good idea to call the clinic for advice. The nurse could hear what was going on so she came to visit. As a result of this, plus other events that have recently occurred, we now are expecting a visit from the clinic dr tomorrow morning to assess whether she will need to be taken into hospital. I'm avoiding the word, sectioned, as it makes me feel like I've failed her. Everything I've done recently has been done either for her benefit or just to make things better for the two of us but now it all seem so hollow and pointless. I promised a while ago that whatever happens, she would stay home with me. Now, I couldn't feel worse as if I'd cheated on her. I know it's crazy but its just the way I feel. No matter which way I look at things this feels like the beginning of the end, or the beginning of something I'm not going to like doing. Even if the dr decides to go with plan A, tweaking meds to try to reduce her anxiety, I can't help but think it will be delaying the inevitable. Oh, by the way, I only found out today that they are now strongly of the opinion that my wife is suffering from dementia with lewy bodies. Whatever, dementia is dementia, my wife suffers from it, I suffer with it. Enough for one night, the sandman has arrived earlier tonight so I'll say goodnight. AL60.
I then spent thenext hour playing dodgeball with a heavy metal medication box. I felt safe in the knowledge that at least she couldn't open it. I was wrong. At least tomorrow when the carer calls I won't be looking for the key, no need. Anyway, while this was going on I thought it a good idea to call the clinic for advice. The nurse could hear what was going on so she came to visit. As a result of this, plus other events that have recently occurred, we now are expecting a visit from the clinic dr tomorrow morning to assess whether she will need to be taken into hospital. I'm avoiding the word, sectioned, as it makes me feel like I've failed her. Everything I've done recently has been done either for her benefit or just to make things better for the two of us but now it all seem so hollow and pointless. I promised a while ago that whatever happens, she would stay home with me. Now, I couldn't feel worse as if I'd cheated on her. I know it's crazy but its just the way I feel. No matter which way I look at things this feels like the beginning of the end, or the beginning of something I'm not going to like doing. Even if the dr decides to go with plan A, tweaking meds to try to reduce her anxiety, I can't help but think it will be delaying the inevitable. Oh, by the way, I only found out today that they are now strongly of the opinion that my wife is suffering from dementia with lewy bodies. Whatever, dementia is dementia, my wife suffers from it, I suffer with it. Enough for one night, the sandman has arrived earlier tonight so I'll say goodnight. AL60.Recent Threads
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