Help Me To Calm Down

[NORTHSIDE]

Hi, My Heart is pounding and I feel exhausted. My wife has just peed in her pants, I found her in the bathroom, she had taken her pants off and put her knickers down the toilet which I had to fish out. Her legs were covered in pee, next step was to get her wet socks off and the rest of her clothes and get her into the shower. She adamantly refused and was insisting on coming back onto the bedroom carpet, I barred the door and insisted .she get undressed and have a shower. She refused saying she wanted to see her Dad, I normally let this go but snapped and told her that her dad was dead, he died about 30 years ago. We ended up shouting at each other and I came within a whisker of pushing her into the shower, l think she saw How angry I had become and went in and eventually took the rest of her clothes off.

I should say this came at the end of a day that started with the best of intentions, at last some sunshine and I took her for a drive out stopping for coffee and cake. But as usual nothing suited her ending up with her refusing to use the toilet in the cafe and apace back home in the car.

Then she refused to take her shoes off the start of another argument and wandered around the house with her hat and coat on for the rest of the day. Yesterday friends called in who she refused to speak to so tonight was really the final straw and I now hate myself for acting so badly, I laid clean clothes out for her but have had to walkway,truth is we are now at the point where we can just about tolerate each other. I should say until about 5 years ago and the onset of Alzheihmers we had a wonderful relationship. Don't expect any solutions but just needed to calm down and get this off my chest, sorry.

 

[Jessbow]

Its hard, bloody hard.
Its takes that promise of ''In sickness and in health'' to the Nth degree.

My Mum that the dementia so it was never the same for me, but I used to walk away, having made sure she was safe, and suck a polo. When the polo was gone I'd go back into the room and start again.

((Big Hug)) you are doing an amazing job xx

 

[imsoblue]

Hi, My Heart is pounding and I feel exhausted. My wife has just peed in her pants, I found her in the bathroom, she had taken her pants off and put her knickers down the toilet which I had to fish out. Her legs were covered in pee, next step was to get her wet socks off and the rest of her clothes and get her into the shower. She adamantly refused and was insisting on coming back onto the bedroom carpet, I barred the door and insisted .she get undressed and have a shower. She refused saying she wanted to see her Dad, I normally let this go but snapped and told her that her dad was dead, he died about 30 years ago. We ended up shouting at each other and I came within a whisker of pushing her into the shower, l think she saw How angry I had become and went in and eventually took the rest of her clothes off.

I should say this came at the end of a day that started with the best of intentions, at last some sunshine and I took her for a drive out stopping for coffee and cake. But as usual nothing suited her ending up with her refusing to use the toilet in the cafe and apace back home in the car.

Then she refused to take her shoes off the start of another argument and wandered around the house with her hat and coat on for the rest of the day. Yesterday friends called in who she refused to speak to so tonight was really the final straw and I now hate myself for acting so badly, I laid clean clothes out for her but have had to walkway,truth is we are now at the point where we can just about tolerate each other. I should say until about 5 years ago and the onset of Alzheihmers we had a wonderful relationship. Don't expect any solutions but just needed to calm down and get this off my chest, sorry.

I can't believe I read this! As I was posting on other topics on TP my OH was in the kitchen behind me and said, "Well, I just peed on the floor." I didn't know how to post my frustration with that! He was struggling to put clean pants on and I discovered his sox were soaked. Big argument because he would NOT take them off!! He has a mobility program so he said he couldn't move fast enough. That can't be it anymore. I have urinals he can pee in. This at least the 2nd time that I don't think he knew it was coming. He won't admit it. Maybe he's forgetting to go to the bathroom also. We have adult diapers but use them rarely. Again, another step toward the reality that this is getting so much worse!

 

[NORTHSIDE]

Hi, sorry to hear that, my wife has occasional accidents, I think she just leaves it too late to go, she too refuses to wear absorbant pants, the good news is that she is now dressed in clean clothes I have made her a sandwich which she seems to be enjoying and is quietly humming to herself having forgotten all about the upset which only happened half an hour ago. Thanks for replying, I too am now a little calmer.

 

[NORTHSIDE]

I can't believe I read this! As I was posting on other topics on TP my OH was in the kitchen behind me and said, "Well, I just peed on the floor." I didn't know how to post my frustration with that! He was struggling to put clean pants on and I discovered his sox were soaked. Big argument because he would NOT take them off!! He has a mobility program so he said he couldn't move fast enough. That can't be it anymore. I have urinals he can pee in. This at least the 2nd time that I don't think he knew it was coming. He won't admit it. Maybe he's forgetting to go to the bathroom also. We have adult diapers but use them rarely. Again, another step toward the reality that this is getting so much worse!

Its hard, bloody hard.
Its takes that promise of ''In sickness and in health'' to the Nth degree.

My Mum that the dementia so it was never the same for me, but I used to walk away, having made sure she was safe, and suck a polo. When the polo was gone I'd go back into the room and start again.

((Big Hug)) you are doing an amazing job xx

Don't know about a polo, perhaps a couple of stiff whiskeys, only joking, a nice cup of tea, xx

 

[Jessbow]

Don't know about a polo, perhaps a couple of stiff whiskeys, only joking, a nice cup of tea, xx

Yes whatever is your poison, but take yourself away from the angst to drink it.!

 

[Fullticket]

I haven't had to look after my OH so can only imagine what it is like. Mum was difficult enough and I know we went through this stage of peeing, not showering, not changing clothes and being awkward etc. I too have come within a hairsbreadth of being violent but I managed to contain it. All I can offer is that you will find a way of dealing with it (because it's not going to get any better) and, as you say, the memory of a PWD is short. She is humming a song and you are beating yourself up. How about giving yourself a pat on the back for not getting violent, for dealing with it (not perfectly maybe but next time maybe you will do it better)? Pour one for me while you're at it and enjoy.

 

[margherita]

I came within a whisker of pushing her into the shower, l think she saw How angry I had become and went in and eventually took the rest of her clothes off.

A PWD is sometimes similar to a child.
Just like children they perceive (I do not want to use the word "understand" for obvious reasons) when you have no patience left and become obedient.
Do not feel guilty.
You were doing what was the best for her.

 

[Hazara8]

Hi, My Heart is pounding and I feel exhausted. My wife has just peed in her pants, I found her in the bathroom, she had taken her pants off and put her knickers down the toilet which I had to fish out. Her legs were covered in pee, next step was to get her wet socks off and the rest of her clothes and get her into the shower. She adamantly refused and was insisting on coming back onto the bedroom carpet, I barred the door and insisted .she get undressed and have a shower. She refused saying she wanted to see her Dad, I normally let this go but snapped and told her that her dad was dead, he died about 30 years ago. We ended up shouting at each other and I came within a whisker of pushing her into the shower, l think she saw How angry I had become and went in and eventually took the rest of her clothes off.

I should say this came at the end of a day that started with the best of intentions, at last some sunshine and I took her for a drive out stopping for coffee and cake. But as usual nothing suited her ending up with her refusing to use the toilet in the cafe and apace back home in the car.

Then she refused to take her shoes off the start of another argument and wandered around the house with her hat and coat on for the rest of the day. Yesterday friends called in who she refused to speak to so tonight was really the final straw and I now hate myself for acting so badly, I laid clean clothes out for her but have had to walkway,truth is we are now at the point where we can just about tolerate each other. I should say until about 5 years ago and the onset of Alzheihmers we had a wonderful relationship. Don't expect any solutions but just needed to calm down and get this off my chest, sorry.

This is precisely what is not truly understood generally, by those who are removed from the reality of 'dementia' for those - I believe as with yourself - who are going it alone on a daily basis, with a spouse who is subject to what sounds like 'moderate to severe' dementia. It is entirely understood why one can lose one's temper, become so frustrated that things seem pretty hopeless. After all, having to devote a huge amount of time to the actual essentials in respect of incontinence, can be exhausting, both physically and mentally. We cannot, ever ARGUE with dementia. You will never, ever win. A dementia brain simply cannot understand why you would question what is - for them - reality. Whether it is the parent who is no longer living, or a spouse who has died decades past, to deny what they truly believe as TRUTH - even momentarily - can be devastating. This is difficult to really appreciate owing to the nature of dementia and the manner in which it presents in our loved ones. No, there are no 'solutions' as such, but there are tactics or suggestions, which can often help. For my own part, after a period of extremely demanding behaviour from my late mother (bed wetting, refusals, tantrums, and worse) I adopted a mindset which basically prepared me for any eventuality. In other words, whereas I would normally climb into my bed, exhausted, apprehensive, sometimes tearful, not really being able to sleep properly - I made a decision. I would think of the worst possible scenario, as things to come. Instead of contemplating what the next morning or night MIGHT bring, I told myself to expect the most challenging situation, as a norm. This meant that when things turned out to be relatively calm, manageable, devoid of drama - it became much easier to carry on with the role of caring than before. Changing pads, clearing up, refusal of medication, all of that, took on a kind of 'acceptable' nature, because I was prepared for something more extreme. I learned to always keep firmly in my mind, that mother did not truly dislike me, nor did she mean to act in the way she did. The enemy was ALZHEIMER'S. It and it alone confronted me and NOT her. Where there is agitation but no harm being done, let it ride. Sometimes you do not have to utter a word. Most important of all, is that you are A/ Doing a wonderful job in actual fact, despite everything and you are doing it alone. B/ You must also care for yourself. Because you are the sole carer and cannot afford to go under. Else who fills that role? Once 'toleration' is threatened, then that suggests stepping back a pace, taking a long deep breath and perhaps adopting a 'tactic' of your very own, so as to continue caring. At the end of the day, it is you who knows your wife better than anyone else and in a way, better now than she. Thus this whole dedicated role of caring is fundamentally rooted in empathising with that fact as a given. With good wishes.

 

[NORTHSIDE]

Don't know about a polo, perhaps a couple of stiff whiskeys, only joking, a nice cup of tea, xx

I haven't had to look after my OH so can only imagine what it is like. Mum was difficult enough and I know we went through this stage of peeing, not showering, not changing clothes and being awkward etc. I too have come within a hairsbreadth of being violent but I managed to contain it. All I can offer is that you will find a way of dealing with it (because it's not going to get any better) and, as you say, the memory of a PWD is short. She is humming a song and you are beating yourself up. How about giving yourself a pat on the back for not getting violent, for dealing with it (not perfectly maybe but next time maybe you will do it better)? Pour one for me while you're at it and enjoy.

The problem is where do you draw a line and insist on something. The boundaries are always being pushed and for the sake of peace they they get wider and wider. I no longer make an issue about my wife changing into pyjamas for bed, she now normally just keeps the blouse on she has been wearing. No longer insist on washing hands after every visit to the loo, only insist on a shower even third day instead of every other day. I don't insist she eats a meal when it is served, I'll put it on the table then she will usually sit down and eat at some point. Try to keep to a normal lifestyle as much as possible but it becomes more difficult and with every passing day I seem to become a little more detached from leading a normal life.

 

[NORTHSIDE]

This is precisely what is not truly understood generally, by those who are removed from the reality of 'dementia' for those - I believe as with yourself - who are going it alone on a daily basis, with a spouse who is subject to what sounds like 'moderate to severe' dementia. It is entirely understood why one can lose one's temper, become so frustrated that things seem pretty hopeless. After all, having to devote a huge amount of time to the actual essentials in respect of incontinence, can be exhausting, both physically and mentally. We cannot, ever ARGUE with dementia. You will never, ever win. A dementia brain simply cannot understand why you would question what is - for them - reality. Whether it is the parent who is no longer living, or a spouse who has died decades past, to deny what they truly believe as TRUTH - even momentarily - can be devastating. This is difficult to really appreciate owing to the nature of dementia and the manner in which it presents in our loved ones. No, there are no 'solutions' as such, but there are tactics or suggestions, which can often help. For my own part, after a period of extremely demanding behaviour from my late mother (bed wetting, refusals, tantrums, and worse) I adopted a mindset which basically prepared me for any eventuality. In other words, whereas I would normally climb into my bed, exhausted, apprehensive, sometimes tearful, not really being able to sleep properly - I made a decision. I would think of the worst possible scenario, as things to come. Instead of contemplating what the next morning or night MIGHT bring, I told myself to expect the most challenging situation, as a norm. This meant that when things turned out to be relatively calm, manageable, devoid of drama - it became much easier to carry on with the role of caring than before. Changing pads, clearing up, refusal of medication, all of that, took on a kind of 'acceptable' nature, because I was prepared for something more extreme. I learned to always keep firmly in my mind, that mother did not truly dislike me, nor did she mean to act in the way she did. The enemy was ALZHEIMER'S. It and it alone confronted me and NOT her. Where there is agitation but no harm being done, let it ride. Sometimes you do not have to utter a word. Most important of all, is that you are A/ Doing a wonderful job in actual fact, despite everything and you are doing it alone. B/ You must also care for yourself. Because you are the sole carer and cannot afford to go under. Else who fills that role? Once 'toleration' is threatened, then that suggests stepping back a pace, taking a long deep breath and perhaps adopting a 'tactic' of your very own, so as to continue caring. At the end of the day, it is you who knows your wife better than anyone else and in a way, better now than she. Thus this whole dedicated role of caring is fundamentally rooted in empathising with that fact as a given. With good wishes.

Thank you for taking the time to reply, l'm very sorry to hear that you and your mother have had to suffer the effects of Alzheimer's. In the cold light of day I know that everything you say is true and I try at the start of most days determined to adopt a tolerant stance and to try and create as far as possible a calm peaceful atmosphere. At the end of most days I have failed miserably. When my wife was first diagnosed I thought I would be able to cope with anything that Alzheimer's could throw at us never imagining the true scale of the issues that would arise. Hence the disappointment I feel now. Part of the problem is admitting that you can't possibly cope by yourself and I've taken the first step in this direction and now have a carer for a couple of hours on two afternoons which allows me to get out for a swim and do a bit of shopping. Amazing how precious those two afternoons have become. Thanks again for your reply, it's invaluable to hear from others who understand what you're going through.

 

[Philbo]

Hi Northside

I am up early again, as I find that once I stir from sleep, my brain kicks into gear and this morning, I wanted to take my blood pressure tablets sooner, rather than later.

I have a routine BP check with the practise nurse at 10, so wanted to give it a fighting chance of getting a "normal" result. If they say "it's a bit on the high side", I will be tempted to say (again) "well, you try coping with my lot and we'll see how your BP is".

With the toileting, I try and get my wife to go every hour or so, which is slightly easier for me, as she's generally a happy soul, and tends to go wherever I lead her by the hand. This usually reduces the amount of pull-up pants she gets through, though not always.

That said, like yourself, I do sometimes (becoming quite often these days) get cross when she is not able to do what I've asked her to do. For instance, after every trip to the loo, when I am trying to get her to put the pants and trousers back on (I take them off, as otherwise, she often pulls them back up without finishing her routine - if you get my drift), she stares blankly when I ask her to lift each foot to step in!! My back get cross too!!

Yes, the respite time (God, it flies by) does help.

Good luck and keep up the good work.

Phil

 

[Grahamstown]

@NORTHSIDE you are not alone in your anger and loss of temper in trying to cope with your PWD and sheer frustration in the face of intransigence. I have trouble coming to terms with my husband who seems to have lost all sense of rationality and I get very angry. I don’t have to cope with the extreme situation you have but I have to deal with my own feelings. Sometimes I can and sometimes I can’t. We are not perfect just doing the best we can. I mostly cope these days but every now and then I lose it and do the wrong thing. It is that feeling of helplessness in the face of ‘madness’ I find the worst. I hope those short breaks of normality keep you going.

 

[70smand]

I remember when my mum was looking after my dad at home she would become frustrated with dad and her frayed temper would then cause dad to have a bad temper and it would be a vicious circle and then I would be called to calm them both down. My mum didn’t like to bother me, but dad wouldn’t accept any other carers or sitters and so she would only call me when things had escalated to a point where I had to take dad out before one did some serious harm to the other. If I was at work the police would often be called. In the end I used to dread the phone ringing as the situation would be so hard to calm down when everyone was so angry. Mums neighbour would also call me if she could hear things getting heated through the walls.
I know it was hard for my mum but as I only work part time I was able to start doing things with dad during the day to give her a break but would still be called when he started sundowning. I used to try and tell her to go walk in the opposite corner of the house and count to ten, or twenty, or one hundred and not to argue with him, as she knew it wasn’t his fault and tried to come up with coping strategies but I know it was impossible when you have been married for 50 years and are living with Alzheimer’s 24 hours a day.
I’m so glad you have got carers, you need some time for yourself. Have you any family or friends that could help or simply just to talk to for your own peace of mind?
I often used to feel guilty as I always seemed to get the best of dad and worried about my mums own health and mental wellbeing. Eventually she admitted she couldn’t cope any more when it came to a crisis point with Dads paranoia and agression. I really don’t know how I would be if I was in that situation with my own husband.
Mum always says she’s only doing what he would do for her in the same situation as she now visits him every day in his nursing home and I see all the love and patience she has for him come flooding back, and he is always so lovely towards her now.
Please don’t be so hard on yourself, you are doing an amazing job x.

 

[pinkwizard1]

I can't believe I read this! As I was posting on other topics on TP my OH was in the kitchen behind me and said, "Well, I just peed on the floor." I didn't know how to post my frustration with that! He was struggling to put clean pants on and I discovered his sox were soaked. Big argument because he would NOT take them off!! He has a mobility program so he said he couldn't move fast enough. That can't be it anymore. I have urinals he can pee in. This at least the 2nd time that I don't think he knew it was coming. He won't admit it. Maybe he's forgetting to go to the bathroom also. We have adult diapers but use them rarely. Again, another step toward the reality that this is getting so much worse!

Bless you, I know it won't help physically with your OH , my Mum pulls her pads down, opens her legs and whilst flooding the floor days she doesnt know where it's coming from! I ended up slamming a door after the 8th time the other day, it made no difference she continued. It drives me mad too then I end up feeling bad but that's the way it is I guess x

 

[Hazara8]

Thank you for taking the time to reply, l'm very sorry to hear that you and your mother have had to suffer the effects of Alzheimer's. In the cold light of day I know that everything you say is true and I try at the start of most days determined to adopt a tolerant stance and to try and create as far as possible a calm peaceful atmosphere. At the end of most days I have failed miserably. When my wife was first diagnosed I thought I would be able to cope with anything that Alzheimer's could throw at us never imagining the true scale of the issues that would arise. Hence the disappointment I feel now. Part of the problem is admitting that you can't possibly cope by yourself and I've taken the first step in this direction and now have a carer for a couple of hours on two afternoons which allows me to get out for a swim and do a bit of shopping. Amazing how precious those two afternoons have become. Thanks again for your reply, it's invaluable to hear from others who understand what you're going through.

Thank you so much for taking time to respond as you did. I think that everyone, without exception, believes initially that they are 'able to cope with anything that Alzheimer's could throw at us'. Then reality dawns! The depths of utter despair can come about in the throes of having to address this disease in your loved one. Clearly, you have the perspective to meet the challenge and those 'couple of hours' for yourself, yes, become rather special in many ways. Carers now, might eventually lead towards Care proper, something you will of course have contemplated. Day to day worked for me, in as much as Alzheimer's behaves in that way. Albeit a very individual experience, specific to you, owing to the fact that as yet, there is no 'cure', we can at least engage on these forums and share our stories, despite the pain which might accompany the telling of them. Your account will have helped people without any doubt and we thank you for that valuable input.

 

[Novice]

I can identify with all the above. Mum diagnosed 4 years ago and over the past week seems to have taken a bit of a nose dive. I manage the toilet situation by taking her every couple of hours and staying until she has finished. Fortunately she can still clean herself up most of the time. Sanitary towels have been a life saver as we don't need full blown pants at the moment. HOWEVER, when I thought things could get no worse I left her in the loo for two minutes while I finished the washing up and when I went to check on her she had removed her false teeth and was using these to clean her backside. (Sorry if I have offended anyone!) Is this a first? (Feel better putting that on 'paper'. Can even see the funny side now although could not 20 minutes ago!!!!)

 

[NORTHSIDE]

The strangest thing really, after the struggles of yesterday, today has been the best for an awful long time, it helped that the sun has been shining here in Northumberland, we've been for a walk, pottered in the garden, went to the tip together to get rid of rubbish, had a meal together this evening and my wife has been very happy and smiley and keeps looking at me in a fond sort of way. She even flushed the toilet and washed her hands without being prompted this afternoon. What's going on!

We've been busy most of the day, so sorry that I haven't replied sooner to all who have taken the trouble to reply to my post. Your replies really have helped.

I can only offer my best wishes and sympathy in return. To 'Novice' I am fortunate in that my wife doesn't have false teeth yet, so that's one issue I won't have to come to terms with.

And to Philbo funnily enough was due my annual Birthday check up at the doctors today at 8.40. I've been very good diet and alcohol wise the last few weeks. Set the alarm, got up early, got wife ready, then got a call at 8.20 to say it was cancelled due to sickness. Only one thing to do then,have a bacon sarnie,it was lovely. Thanks everyone, good luck and best wishes, bracing myself for tomorrow, it can't be as good as today, I'm sure I'll be back in touch before long, xx

 

[Lucianne]

Hi, My Heart is pounding and I feel exhausted. My wife has just peed in her pants, I found her in the bathroom, she had taken her pants off and put her knickers down the toilet which I had to fish out. Her legs were covered in pee, next step was to get her wet socks off and the rest of her clothes and get her into the shower. She adamantly refused and was insisting on coming back onto the bedroom carpet, I barred the door and insisted .she get undressed and have a shower. She refused saying she wanted to see her Dad, I normally let this go but snapped and told her that her dad was dead, he died about 30 years ago. We ended up shouting at each other and I came within a whisker of pushing her into the shower, l think she saw How angry I had become and went in and eventually took the rest of her clothes off.

I should say this came at the end of a day that started with the best of intentions, at last some sunshine and I took her for a drive out stopping for coffee and cake. But as usual nothing suited her ending up with her refusing to use the toilet in the cafe and apace back home in the car.

Then she refused to take her shoes off the start of another argument and wandered around the house with her hat and coat on for the rest of the day. Yesterday friends called in who she refused to speak to so tonight was really the final straw and I now hate myself for acting so badly, I laid clean clothes out for her but have had to walkway,truth is we are now at the point where we can just about tolerate each other. I should say until about 5 years ago and the onset of Alzheihmers we had a wonderful relationship. Don't expect any solutions but just needed to calm down and get this off my chest, sorry.

Oh, I do know what you mean in your last paragraph. Whenever my OH is referred to as "my loved one" I think silently to myself, yes, he is my loved one but I'm not sure I always like him very much. And then, of course, I feel guilty.

 

[Philbo]

Well, my blood pressure was "normal" so the 3 lots of BP tablets are obviously still working - blooming miracle.

Three hours of respite visitor this afternoon so did a bit more DIY over my son's house (doing his hall, stairs and landing, which is taking forever, given he works 6 days a week and I am limited to about 1 and a half days a week!).

Find it perversely therapeutic though.

Keep up the good work Northside.

Phil