Two years to get this bad. What now?

[yak55]

Hi. Here we go again, another sleepless night and nothing to post home about. Another busy week coming to a close, and here I lie, in the darkness of the bedroom, completely frazzled and wide awake. Looking back it really has been a funny old week. On Monday my daughter came home from work feeling, 'out of sorts', on Tuesday her dr sent her to hospital A&E to properly assess what was wrong. Gastroenteritis, great, is it catching thought I , all heart aren't I . Anyway, one of my other daughters invited her to go and stay at hers up in the lakes for a bit of respite. Is it just me or am I not quite getting something right here. Please don't hesitate to tell me if I'm sounding a little selfish. I must admit, if I'm out and about and meet someone I know they ask the question, how are you, how are you coping, it's almost as if I'm programmed to answer , fine, no problems we can manage who am I kidding, say one thing and mean something totally different. I guess that the rest of the family think we're coping ok, in many ways I think we really are doing alright. But deep down I'm in turmoil, that's the real reason I'm posting here at daft o'clock when I should really be asleep, if anyone needs a beauty sleep it's me☺So, what will Saturday bring? I suppose I'll just have to wait and see. Right, sleep time, just lie down, close eyes, think of nothing in particular and drift away. Still hereAl.

I'm here Al60, wide awake and googling day care for my Mum! I should be asleep too as I'm exhausted but hey ho it's just nice to have some time on my own!
I sleep with one ear ****** anyway!
The one thing that keeps me awake is "will I be able to keep this up?" "Will my health and sanity let me carry on?" and "what does the future hold?"
Sweet dreams x

 

[margherita]

Hi @AL60,
I too am used to answering "well, thanks", when someone asks me how I am or how I cope with my husband.
I don't want to complain or explain because I think most people wouldn't understand.
My husband is in the early stage of Alzheimer's and people who know him can't realize what my life is like.
I miss my freedom .
I find it hard to have to repeat things and instructions in the hope he can understand, at last.
I am fed up with having to always say " yes" to avoid him getting angry and becoming verbally abusive.
Minor problems, people who do not know might think.
Maybe I am selfish and intolerant, but it is all so wearing

Anyway, I am wide awake,too

 

[AL60]

Hi. That's another day survived. Yes, the evenings are great for me, especially when she's in one of her darker moods as she was at tea time. At present the abuse is only verbal but I'm sure it's only a matter of time. Still, I think she must have exhausted herself as she went to bed around seven. I don't have to worry about her wandering as up to now she goes to bed and stays there until morning. She had a spell about a year ago when she would be up at midnight thinking it was morning but up to now the memory clocks around the home seem to be working. The worse the shouting and nastiness is it seems to take me longer to recover through the evening. Like earlier on she was so loud and 'in ya face', I really did expect her to strike out. Even after she'd gone to bed it's felt as though I could still hear her. It really is a nightmare. Yet if you were to meet us both in the street tomorrow and say, Hi how's it going, you know what the answer would be. We're ok, we're doing fine. We don't want to burden our problems onto others, if we did I think next time they saw us coming they'd probably cross the road to avoid us. That's the beauty of this forum, it's good to download on here, even if no one read these posts it's just good to get it out of your system. Well, I certainly feel better now but I'm still awake. I'm ready to sleep but I know that the morning is just one long blink away then it starts all over again. Life shouldn't be like this but perhaps I've been spoiled with so many years of far more ups than downs, so now this is it as good as it gets. Time to go, perhaps tomorrow won't be too bad, goodnight Al..

 

[Amethyst59]

We read your posts Al, we hear you. I’m going to risk putting my foot in it...you must have had a good marriage to be putting up with what you are now...would your wife want you to? Can’t you try and get a sitter so you can have a little bit of your life back? You feel it may all move up a notch...so why not try to stay one step ahead? And is there any possibility of your daughter helping more? I mean enough so you could get away overnight? I think the younger daughter is poorly at the moment, but could the older one come and help out?
I am just getting my OHs children geared up for over night stays...and they are offering more than we need at the moment! That is a good position to be in. I think I am refusing some, because my head is in the sand. I don’t want a night off, I want to be with my husband...but what I want is MY husband, not the husband with dementia. I’m singing in my head here...’oh, peekaboo, I can’t see you, everything must be grand.....cos we have enough trouble in everyday life, I just bury me head’!

 

[Shedrech]

hi AL60
yes your posts are read, honest - maybe when you hear Tinkerbell's bell ringing you might think of the good wishes being sent your way
I do agree with Amethyst59 - a Christmas present you could organise for yourself = some days at a day care centre for your wife so that she has some social time with others and is well looked after and entertained AND you get some social, or even antisocial, time to spend on yourself however you wish - or some hours when a sitter takes over - and some home help, a cleaner at least - it's worth starting to get a team around you to support you in caring for your wife; no-one can do this all alone and stay hale and hearty
nag over, sorry

 

[Neverbloobloo]

Hi. That's another day survived. Yes, the evenings are great for me, especially when she's in one of her darker moods as she was at tea time. At present the abuse is only verbal but I'm sure it's only a matter of time. Still, I think she must have exhausted herself as she went to bed around seven. I don't have to worry about her wandering as up to now she goes to bed and stays there until morning. She had a spell about a year ago when she would be up at midnight thinking it was morning but up to now the memory clocks around the home seem to be working. The worse the shouting and nastiness is it seems to take me longer to recover through the evening. Like earlier on she was so loud and 'in ya face', I really did expect her to strike out. Even after she'd gone to bed it's felt as though I could still hear her. It really is a nightmare. Yet if you were to meet us both in the street tomorrow and say, Hi how's it going, you know what the answer would be. We're ok, we're doing fine. We don't want to burden our problems onto others, if we did I think next time they saw us coming they'd probably cross the road to avoid us. That's the beauty of this forum, it's good to download on here, even if no one read these posts it's just good to get it out of your system. Well, I certainly feel better now but I'm still awake. I'm ready to sleep but I know that the morning is just one long blink away then it starts all over again. Life shouldn't be like this but perhaps I've been spoiled with so many years of far more ups than downs, so now this is it as good as it gets. Time to go, perhaps tomorrow won't be too bad, goodnight Al..

Hi

 

[Neverbloobloo]

Hi, I was wondering how to overcome the guilty feeling when I unintentionally let my expression of frustration show. I do try to act as if it’s the first time I’m asked no matter how many times and I know it’s not her fault, just the condition? Any tips on bringing the situation back to calmer waters would be welcome, thanks

 

[Shedrech]

hello @Neverbloobloo
a warm welcome to TP
sounds as though you are doing your best - it is irritating, let's be honest, to be hearing something repeated over and over, and we are only human so we may well snap once in a while - no need for guilt; you've noticed and realised, that's the main thing
I think a lot of us develop a way to respond neutrally, so the person feels they are being acknowledged, but without really answering; you know, those umms and aaahs that we use at times - or have a short answer that you repeat each time in a calm quiet voice, with a smile if you can, no change in the wording, no explanations or reasoning; just like a stuck record - or an answer then a distraction eg I fancy a cuppa and a biscuit, be right back - or answer and retreat eg sorry, must pop to the loo (generally can't argue with that one) - or a 'yes and eg have you seen this /could you hold this for me/would you help with this ...' (not a 'no' or a 'but' as those are signals that you are starting a disagreement/argument - my dad was so adept at picking up on those and then the foreworks started!)
I pretend I have a switch which turns me into a robot, so my outer shell let's it all slide off me, and a robot has no feelings, so there are none to hurt - NOT all the time, that wouldn't be healthy, just when the repetition, or an unpleasant task, might get to me - I also have a favourite song which I sing to myself in my head which takes my mind off what ever and helps me be calm and pleasant
now you've found TP, do keep posting as members generously share their experiences
maybe even start your own thread when you're ready
best wishes

 

[dancer12]

Hi. That's another day survived. Yes, the evenings are great for me, especially when she's in one of her darker moods as she was at tea time. At present the abuse is only verbal but I'm sure it's only a matter of time. Still, I think she must have exhausted herself as she went to bed around seven. I don't have to worry about her wandering as up to now she goes to bed and stays there until morning. She had a spell about a year ago when she would be up at midnight thinking it was morning but up to now the memory clocks around the home seem to be working. The worse the shouting and nastiness is it seems to take me longer to recover through the evening. Like earlier on she was so loud and 'in ya face', I really did expect her to strike out. Even after she'd gone to bed it's felt as though I could still hear her. It really is a nightmare. Yet if you were to meet us both in the street tomorrow and say, Hi how's it going, you know what the answer would be. We're ok, we're doing fine. We don't want to burden our problems onto others, if we did I think next time they saw us coming they'd probably cross the road to avoid us. That's the beauty of this forum, it's good to download on here, even if no one read these posts it's just good to get it out of your system. Well, I certainly feel better now but I'm still awake. I'm ready to sleep but I know that the morning is just one long blink away then it starts all over again. Life shouldn't be like this but perhaps I've been spoiled with so many years of far more ups than downs, so now this is it as good as it gets. Time to go, perhaps tomorrow won't be too bad, goodnight Al..

Hi:

Verbal abuse quickly escalates to physical abuse, not intentionally but it does and it comes about when you are the least prepared for it. At times verbal abuse is worse than physical abuse. If you are a sensitive person the physical abuse (depending on how bad) heals but it takes much longer ta heal from verbal abuse.

I'm going to apologize in advance because I know you don't want to hear this, but it's time for the professionals to take over. You've done a fabulous job so far but for your own sanity & your daughters and for safety reasons please let the professionals take over. Your wife is struggling internally, she does not mean to yell, scream or hit but it's the only way she knows now. GOD FORBID THAT ANYTHING HAPPENS TO EITHER OF YOU OR ONE OF YOUR DAUGHTERS DURING THIS TIME OF ABUSE I know you are struggling inside, hence the lack of sleep. Talk to her doctor, he's not like a friend you meet on the street and next time will cross the street. IS IT NOT HIS JOB TO HELP PEOPLE, GIVE HIM ALL THE INFORMATION HE NEEDS TO DO IT. Again I apologize. It doesn't need be full time care, but it does need someone trained to handle these situations.. You've done a wonderful job thus far but I believe it's time for the professionals to step in (for your own sanity & safety, and your wife's & daughters as well).

 

[AL60]

Hi:

Verbal abuse quickly escalates to physical abuse, not intentionally but it does and it comes about when you are the least prepared for it. At times verbal abuse is worse than physical abuse. If you are a sensitive person the physical abuse (depending on how bad) heals but it takes much longer ta heal from verbal abuse.

I'm going to apologize in advance because I know you don't want to hear this, but it's time for the professionals to take over. You've done a fabulous job so far but for your own sanity & your daughters and for safety reasons please let the professionals take over. Your wife is struggling internally, she does not mean to yell, scream or hit but it's the only way she knows now. GOD FORBID THAT ANYTHING HAPPENS TO EITHER OF YOU OR ONE OF YOUR DAUGHTERS DURING THIS TIME OF ABUSE I know you are struggling inside, hence the lack of sleep. Talk to her doctor, he's not like a friend you meet on the street and next time will cross the street. IS IT NOT HIS JOB TO HELP PEOPLE, GIVE HIM ALL THE INFORMATION HE NEEDS TO DO IT. Again I apologize. It doesn't need be full time care, but it does need someone trained to handle these situations.. You've done a wonderful job thus far but I believe it's time for the professionals to step in (for your own sanity & safety, and your wife's & daughters as well).

Hi.No need to apologise. I know what I need to do, I've known for a long time what I need to do. Trouble is, I always put her feelings first at the expense of mine. This isn't a strength, it's a weakness on my part. The anger usually passes and things return to a kind of normal. Then nights like tonight when she goes to bed nice and early it gives me a chance to just relax and unwind.. it also gives me a chance to think about how the day has gone, how I could have done things better, a kind of mental review of how the day has gone. I do enjoy these evenings. Anyway, yesterday evening, well, late afternoon, it had gone dark, I received a call to tell me that a long awaited care plan has finally been put together. I don't know the details until I read the contract, what bothers me is my needs for help have changed since the last time care packages were talked about. What also bothers me is how my wife will react to strangers coming to the house. I know many have been in this situation and everything has turned out ok, but I'm a born worrier. That's the story so far. Tomorrow morning I've made a Dr's appointment for her which we'll both attend and in the afternoon I'm expecting a visit from our nurse from the clinic. So I'm hoping to get some answers to my concerns. That's it for now, here's hoping tomorrow is better than today Al.

 

[dancer12]

Hi. That's another day survived. Yes, the evenings are great for me, especially when she's in one of her darker moods as she was at tea time. At present the abuse is only verbal but I'm sure it's only a matter of time. Still, I think she must have exhausted herself as she went to bed around seven. I don't have to worry about her wandering as up to now she goes to bed and stays there until morning. She had a spell about a year ago when she would be up at midnight thinking it was morning but up to now the memory clocks around the home seem to be working. The worse the shouting and nastiness is it seems to take me longer to recover through the evening. Like earlier on she was so loud and 'in ya face', I really did expect her to strike out. Even after she'd gone to bed it's felt as though I could still hear her. It really is a nightmare. Yet if you were to meet us both in the street tomorrow and say, Hi how's it going, you know what the answer would be. We're ok, we're doing fine. We don't want to burden our problems onto others, if we did I think next time they saw us coming they'd probably cross the road to avoid us. That's the beauty of this forum, it's good to download on here, even if no one read these posts it's just good to get it out of your system. Well, I certainly feel better now but I'm still awake. I'm ready to sleep but I know that the morning is just one long blink away then it starts all over again. Life shouldn't be like this but perhaps I've been spoiled with so many years of far more ups than downs, so now this is it as good as it gets. Time to go, perhaps tomorrow won't be too bad, goodnight Al..

Hi:

Your wife will take to strangers more than you think. If they are professionals they know how to handle all sorts of situations and hopefully put your mind at ease.

 

[AL60]

Hi:

Your wife will take to strangers more than you think. If they are professionals they know how to handle all sorts of situations and hopefully put your mind at ease.

Hi. I know you're right but I can't help worrying about it

 

[AL60]

Hi again. We always used to go to a local supermarket for what we called, a monthly shop. Mainly to stock up the freezer and cupboards etc. After trying out Internet monthly shopping I was hooked, no more traipsing up and down the aisles with a wonky trolley for me☺. As time has gone by , my wife's eating habits as they are and me looking for ways to fill the day, we've got into the habit of going to the local shops every few days. Well, Christmas is coming so I thought what a good idea it would be to go shopping to restock the dwindling freezer contents. So, with the freezer cleaned out and fully de-iced, off we went. What a mistake that was. Everything I put in our trolley she complained about how she wouldn't eat that, it was c#$p, that's unhealthy, then rummaging through the contents and throwing things back onto the shelves or back into the freezer cabinets. It was a total disaster. Three aisles in I'd had enough. While at the checkout I was trying to remember how long ago we were in that same shop, a team effort, almost telepathically filling up the trolley between us, chatting to the checkout operator about how many children we had and what they were all doing, she was in her element. Yet now! I can't remember when we last went to that store, probably this time last year. It's also almost a year to the day since I started this thread, I've no intention of starting another, three years to get this bad, or Al61. No, I'll stick with two years and stay at Al60☺. It's also almost one year to the day since I retired from my old job. I can't believe how fast the year has gone. People ask me how it feels to be retired, I don't think I have, I've taken on full time care work and it's the toughest job I've ever had. Goodnight, Al.

 

[dancer12]

Hi again. We always used to go to a local supermarket for what we called, a monthly shop. Mainly to stock up the freezer and cupboards etc. After trying out Internet monthly shopping I was hooked, no more traipsing up and down the aisles with a wonky trolley for me☺. As time has gone by , my wife's eating habits as they are and me looking for ways to fill the day, we've got into the habit of going to the local shops every few days. Well, Christmas is coming so I thought what a good idea it would be to go shopping to restock the dwindling freezer contents. So, with the freezer cleaned out and fully de-iced, off we went. What a mistake that was. Everything I put in our trolley she complained about how she wouldn't eat that, it was c#$p, that's unhealthy, then rummaging through the contents and throwing things back onto the shelves or back into the freezer cabinets. It was a total disaster. Three aisles in I'd had enough. While at the checkout I was trying to remember how long ago we were in that same shop, a team effort, almost telepathically filling up the trolley between us, chatting to the checkout operator about how many children we had and what they were all doing, she was in her element. Yet now! I can't remember when we last went to that store, probably this time last year. It's also almost a year to the day since I started this thread, I've no intention of starting another, three years to get this bad, or Al61. No, I'll stick with two years and stay at Al60☺. It's also almost one year to the day since I retired from my old job. I can't believe how fast the year has gone. People ask me how it feels to be retired, I don't think I have, I've taken on full time care work and it's the toughest job I've ever had. Goodnight, Al.

Hi:

Your wife is a lucky lady and you are a good husband. I remember when my youngest son went to junior kindergarten for the first time I watched as he got on the bus with his legs so small he could hardly climb the bus stairs wearing a backpack that was almost bigger than he was. As he sat down in the bus I fought back tears. When the bus rolled away I could hold them no longer and cried all the way home. Upon his return, he got off the bus with a biggest smile , gave me a big hug and said I made a new friend, his name is Alex and I fought back tears again, only this time they were happy tears Happy tears because I saw the joy in my sons heart. It was then that I realized that he and I needed this. It was time for me to to be strong for both of us.

 

[Philbo]

Hi Al60

I know what you men about the quiet time in the evening - I don't have the anger issues with my wife (luckily, she's almost always in a happy place) but even so, it is a relief when I get her safely tucked up in bed. She's a bit of a fidget, so wanders around the house"tidying". Last night, after a very painful tooth extraction earlier, I had done some some ironing, putting several pairs of her trousers on hangers, only to find them later dumped in a pile next to the washing machine!

I also reflect on how things used to be 4+ years ago, when my wife was a very independent woman, doting on the grandkids, doing all the shopping and organising and planning where we'd go on our next weekend away of holiday abroad.

I took early retirement in 2010, primarily so we could do more travelling etc. Got to do this for about 18 months but I had already suspected something was amiss and it's been all downhill since then.

You are doing a fine job so please take the time to look after yourself.

Kind regards
Phil

 

[Amethyst59]

You know, Al ...I have been analysing my feelings about using carers sometimes. I have hesitated thinking, we don’t need that, he isn’t that bad, I’m coping. But then I realised that I am burying ‘me ‘ead’ (I love Flanders and Swan!) The reason I don’t want carers is not because I don’t need the help, but because I don’t want this situation. I want my husband back. I want our life back. And I feel, if I go down the road of having carers, I am forever shutting the door on our old life.
I phoned an agency yesterday, and they are coming to visit next week. If there is a miracle, or if @Philbo finds that magic wand, then I will cancel the carers.
Just saying

 

[SteveV]

I haven't read the whole thread but I empathise completely with everyone's comments here. I am a carer for my mother, which is a slightly different situation, and her symptoms are more of paranoia then dementia or Alzheimers. She has had two strokes which have caused her mental condition and she is not verbally abusive, but I too feel kind of trapped and isolated.

She has a professional carer who gets her up and dressed, bathed etc in the morning but after that I am on my own all day with her. I have taken early retirement and as an only child with no family of my own feel it is my duty to try and look after her but it is getting very wearing.

A Dementia Advisor from the Alzheimer's Society is coming to visit in a couple of weeks and she advised me to go to a GP and ask for a mental health assessment. I really don't know if she has dementia/Alzheimers or whether her morbid fears and hallucinations are simply the result of brain damage caused by her strokes.

Anyway, I just wanted to say that this thread has shown me that there are people dealing with much more difficult situations than mine and has made me confront my selfish feelings of 'having no life' so that I am resolved to not allow myself to0 get angry or frustrated so much in future.

 

[Amethyst59]

I haven't read the whole thread but I empathise completely with everyone's comments here. I am a carer for my mother, which is a slightly different situation, and her symptoms are more of paranoia then dementia or Alzheimers. She has had two strokes which have caused her mental condition and she is not verbally abusive, but I too feel kind of trapped and isolated.

She has a professional carer who gets her up and dressed, bathed etc in the morning but after that I am on my own all day with her. I have taken early retirement and as an only child with no family of my own feel it is my duty to try and look after her but it is getting very wearing.

A Dementia Advisor from the Alzheimer's Society is coming to visit in a couple of weeks and she advised me to go to a GP and ask for a mental health assessment. I really don't know if she has dementia/Alzheimers or whether her morbid fears and hallucinations are simply the result of brain damage caused by her strokes.

Anyway, I just wanted to say that this thread has shown me that there are people dealing with much more difficult situations than mine and has made me confront my selfish feelings of 'having no life' so that I am resolved to not allow myself to0 get angry or frustrated so much in future.

Hello! Welcome to our ‘happy band’! I find a thread written by a lady in Switzerland really inspiring. Not in a sickly way...she is very realistic, but also determined not to be defined by ‘caring’ and not allowing it to make her bitter. If I was clever, I could post a link to her thread...her name is @PalSal A Stream of Consciousness. If you ‘click’ on her name, it will take you to her profile page...and you can get to her thread from there.
You will find other people in your situation too...this forum is a really wonderful source of support and advice.

 

[Roseleigh]

Hello! Welcome to our ‘happy band’! I find a thread written by a lady in Switzerland really inspiring. Not in a sickly way...she is very realistic, but also determined not to be defined by ‘caring’ and not allowing it to make her bitter. If I was clever, I could post a link to her thread...her name is @PalSal A Stream of Consciousness. If you ‘click’ on her name, it will take you to her profile page...and you can get to her thread from there.
You will find other people in your situation too...this forum is a really wonderful source of support and advice.

https://forum.alzheimers.org.uk/threads/a-stream-of-consciousness.102192/

Here is the link. Pal Sal is a true saint! Fifteen years she has cared for her dh! And no bitterness.
What a remarkable person.

I came on here to complain about DDs but she has shamed me, she looks for the good in all, and this gives her strength.

 

[AL60]

Hi. I was so looking forward to my lunch today. I'd bought a loaf from the local baker and some lovely ham from the best deli' in town. Only to come home and find the fridge utterly butterless , great, a casualty of that shopping trip. I was less than impressed to say the least. Once again, supermarket here i come. Eventually I did enjoy my late lunch. If only my wife enjoyed her food, life would be a lot easier. She threatened to go off cheese yesterday but thankfully she's back on it today. I noted Philbo's line about finding freshly ironed laundry waiting to be washed, I totally get that. It happens often to me too. I've reduced the stress of that by not actually doing any ironing. It doesn't feel quite so bad now when I find clean washing back in the machine. I've also stopped worrying about Monday morning now, I'll cross that bridge when I come to it. Al.