Who has stolen my husband?

[Sad Staffs]

Im glad it is going OK
Please dont do too much and set back your recovery
The way he is only interested in himself is typical, Im afraid. Not his fault, poor thing, as he will be unable to see anything from any other view point now - but still difficult to cope with.

All that makes sense. Everything you say always makes sense.
Thank you.
I thought I had two clips and a number of stitches. There were 20 clips. No wonder it’s been sore, but it’s now more sore than before.
It was a very eventful trip with husbands brother and wife. I sometimes wonder why they bother coming to see us when my husband is so unfriendly and grumpy and rude.
It’s a tough life. I’m a novice at this dementia, just not sure I want to become a professional though!
I’m missing tha last two weeks, even incapacitated I felt the freedom. And I don’t feel in the least bit guilty bout enjoying the time to myself.
Take care, love B xx

 

[Sad Staffs]

Glad they took the clips out - that is progress

I have heard of people having small cards (business card size) with something like "please forgive me I have a degenerative brain condition and cannot help my behaviour" printed on it to be handed out out discretely by the carer when needed.

I’m not sure many people in this area would understand that statement
It doesn’t flow quite as well as hearing dog for the deaf, or guide dog for the blind does it. We should think up something a bit more snappy, or perhaps snappy is the wrong word for me to use
Love B xx

 

[Guzelle]

I sm wondering how you will manage on crutches looking after someone who is ill mentally aswell. I wish you look it sounds a horrendous situation wouldn’t he be better staying in longer?

 

[kindred]

I’m not sure many people in this area would understand that statement
It doesn’t flow quite as well as hearing dog for the deaf, or guide dog for the blind does it. We should think up something a bit more snappy, or perhaps snappy is the wrong word for me to use
Love B xx

I find brain damage is more understandable, explain OH has catastrophic brain damage. Hello B!! I have been following your progress with such love and thoughts and good wishes and hope that soreness goes quickly. You are such a good woman. Interested you raised the question of feeling mortified. i have found sheer embarrassment and the like one of the worst incidental torments. I remember the social worker saying well if he keeps falling out of bed, call the ambulance or the police and they'll get him back in, and how I shrunk to nothing hearing this, the very thought so alien to us. I have always tried so hard for good manners and general niceness ... I wish I were tougher.
so so good to hear from you, so good. So well done darling. You are inspiration. with love and best, Geraldinexxxx

 

[karaokePete]

Thank you, it’s like he has a sixth sense when I go out of view, he wakes up and either shouts or follows me.
However, I was dreaming about another walk along a beach and searching the fab ancient ruins. How does tomorrow suit you?!!
I wish I was in Cyprus, Sadly it will only ever be in my dreams.
Hope you are well, and hope the weather is balmy?
Love Bx

That sounds like separation anxiety. My wife suffers with that too and she sometimes follows me like we’re joined at the hip. That said I go walking along the beach and through the ruins by myself as I can leave her watching the TV for an hour.

I’ll be on the walk tomorrow and I’ll wave to you when I reach the ruined temple on the hilltop overlooking the ancient city. It may be a bit of an optimistic wave though as I doubt you’ll see it back in the UK.

I’m fine but the weather is a bit changeable at the moment as we seem to have a shower every other day, although the temperature is in the low 20’s most of the time. Keep well yourself.

 

[Sad Staffs]

I sm wondering how you will manage on crutches looking after someone who is ill mentally aswell. I wish you look it sounds a horrendous situation wouldn’t he be better staying in longer?

Thank you for thinking about me. I’m managing on one crutch around the house especially, and it’s ok. Although I did get told off by the nurse who did my clips that I should be using two until after my first physio session, as I only used one to go to hospital!
There is a balance as I don’t think being in the care home has been a good experience for my husband. I think he has lost his confidence. And I’m not sure we can afford too many weeks in care. It cost a fortune!
Bxx

 

[Sad Staffs]

I find brain damage is more understandable, explain OH has catastrophic brain damage. Hello B!! I have been following your progress with such love and thoughts and good wishes and hope that soreness goes quickly. You are such a good woman. Interested you raised the question of feeling mortified. i have found sheer embarrassment and the like one of the worst incidental torments. I remember the social worker saying well if he keeps falling out of bed, call the ambulance or the police and they'll get him back in, and how I shrunk to nothing hearing this, the very thought so alien to us. I have always tried so hard for good manners and general niceness ... I wish I were tougher.
so so good to hear from you, so good. So well done darling. You are inspiration. with love and best, Geraldinexxxx

You always make me feel good about myself, thank you Geraldine. Strange really, as I rarely feel good about myself these days. So many mixed emotions... all jumbled up!
It would make life easier if we could flash something to warn people. I almost want to make a joke, such as beware grumpy temperamental person at hand! But that would be insensitive and so politically incorrect, wouldn’t it!!!
I was brought up to accept things as they are.... don’t make a fuss, don’t complain, you made your bed now lie in it kinda family. In many instances it’s detrimental to our own well being, but you can’t change the habit of a lifetime.
But I don’t like making a fuss, don’t stand up for myself (although I will fight tooth and nail for the person I love), don’t complain if hospital or GP appointments are held up, wouldn’t dream of phoning 999, never expected anything from anybody, so things like getting attendance allowance almost made me buy a bottle of bubbly!!
My beloved Mom was a stickler for good manners. Even now, at 73, I will say thank you for having me...
As a family we had very little or no money, but I think we were brought up to respect and consider others.
Geraldine, I’m waffling again! So sorry.
It’s always lovely to hear from you. I hope you and your gorgeous blue eyed boy are well.
Much love, Barbara xx

 

[Sad Staffs]

That sounds like separation anxiety. My wife suffers with that too and she sometimes follows me like we’re joined at the hip. That said I go walking along the beach and through the ruins by myself as I can leave her watching the TV for an hour.

I’ll be on the walk tomorrow and I’ll wave to you when I reach the ruined temple on the hilltop overlooking the ancient city. It may be a bit of an optimistic wave though as I doubt you’ll see it back in the UK.

I’m fine but the weather is a bit changeable at the moment as we seem to have a shower every other day, although the temperature is in the low 20’s most of the time. Keep well yourself.

Thank you, will do.
And I will wave... have a gorgeous meander through the ruined temple.
B xx

 

[Francy]

I think I wrote this in my sleep last night @Francy
Everything you say I feel to. So many of us in the same boat. We are like a nation of loving caring souls trying to do the right thing for the people we love most. And we are all struggling.
Please keep in touch and let me know how you are, with love B xx

Hello B, today for me is good, good only in the sense that JH has at last said he'll visit doctor, I have been praying for 2 years for this. His symptoms are getting much worse and I finally turned to friends for help,and one young friend managed to get through to him. My doctor is on holiday till Monday so need to wait, but I've waited this long, the final few days will seems forever. Light at the end of the tunnel, maybe not, for being realistic is there light, probably not, I don’t think this illness has any light, I've dealt with death and loss but nothing has prepared me for this, I just don't know if I'm up to the challenge, so I pray for the strength, patience and courage to see me through, now realising there are so many in the same situation I must add them to my prayers. I don't know if prayers help or work but I also don't know if they won't, so I'll keep on with them as they harm no one.
XXXX Francy

 

[Francy]

Yes, you are right. I have cared for other long-term illnesses but nothing that takes the ill person into madness and so robs us of a companion at the same time as we are having to deal with the most appalling behaviours and strains. I hope there is something left of us, I am still recovering, mentally and physically. I find it hard to get the boldness I once had back. I think I became a bit of a beggar. I even begged my husband to show mercy at one stage when it was terribly bad.
All my thoughts, thank god for TP. Kindred xxx

Good morning, you sound like me a little broken, bits just keep getting chipped off till there's a big chunk missing and you just get too tired to fight. Over the years I've faced many bad times and became strong for others relied on me and learned to hold my emotions in check, but this has made me a wreck, it's not always easy to hold the tears back. It's not just the dementia sufferers who are broken, we are too. XXXX

 

[Francy]

The two weeks in the care home are up in the morning. My husband will be coming home.
We have spoken 6 or 8 times every day. I would tell him what time I would call, or the time he should call, but he didn’t/couldn’t/wouldn’t wait for those times. Throughout his stay he has got very upset if he didn’t know the name of the person who would change his pads. He badgers them into giving him the name of the person fitting his night pads, and wanted to know as many nights ahead as possible, he then writes down who it will be. It’s the same for his morning routine. He gets very upset if a different person turns up and has been known to send them away.
He is getting agitated about coming home, in particular our sleeping in the same bed. He says he won’t sleep because he will be frightened of hurting my wound. I keep telling him my wound is on the opposite side to him, but he repeats the same thing daily.
I have sorted out them packing his case and they are bringing him home. He doesn’t believe that it’s sorted, he tells me they are trying to wriggle out of it, he goes over the same thing. I can feel myself bristling as he goes on.

So, how do I feel?
After the initial feeling of guilt and loss I have to admit that I have enjoyed the break from him. I feel guilty just saying it, but it’s being honest.
Part of me dreads the return of his obsessive, aggressive and selfish manner. This isn’t the man I’ve loved for over 40 years. But then it hurts that I have said that.
I know it will be back to how it was, and nothing has changed.
I know it isn’t right for him to be in a care home. Most people don’t think he even has dementia.
I know the little bit of freedom I have had has done me good, even though I have been unable to get out of the house. Just getting up and going to bed when I want to, watching rubbish tv programmes I want to, not having to go up and down stairs every hour to see to his pads has been a huge relief.

Now we are back to square one. Watching and waiting. Our lives are just slipping away. Nothing changes.
Love B xx

Hello again B, hope all is OK with you now your husband is home. No one needs a war on their hands so I hope he's mellowed while he's been away, bad behaviour and aggression so horrible to live with. Take care and thinking of you. XXXX Francy

 

[Grahamstown]

Good morning dear friends on TP. My thoughts are with you as we all struggle on trying to do our best as we watch our dear ones ‘disappear’. Trying to keep strong for a short time is difficult enough but when trials go on and on we need that extra little bit of comfort and support to go on, which our friends here do.

 

[Sad Staffs]

Hello B, today for me is good, good only in the sense that JH has at last said he'll visit doctor, I have been praying for 2 years for this. His symptoms are getting much worse and I finally turned to friends for help,and one young friend managed to get through to him. My doctor is on holiday till Monday so need to wait, but I've waited this long, the final few days will seems forever. Light at the end of the tunnel, maybe not, for being realistic is there light, probably not, I don’t think this illness has any light, I've dealt with death and loss but nothing has prepared me for this, I just don't know if I'm up to the challenge, so I pray for the strength, patience and courage to see me through, now realising there are so many in the same situation I must add them to my prayers. I don't know if prayers help or work but I also don't know if they won't, so I'll keep on with them as they harm no one.
XXXX Francy

Hi Francy
Thank you so much for your message, the messages mean a lot to me, and help me to keep going.
I’m so pleased you have persuaded JH to see the doctor. You need to try to get this recognised and if possible treated for your own sake as much as his. Having said all that, I am such a novice where dementia is concerned. There are many others on here that can give you much better advice than me. To be honest my husbands dementia just confuses me, one minute up, calm, lovely, next minute like a demon, vile and certainly nothing lovely about him. But I am getting more experienced at handling the emotional side of our life. It’s far from easy, and when he turns on me it still shocks me, and inevitably I react. But Francy we are human, we didn’t sign up for this, and we should try not to beat ourselves up. We have enough on our plate....
Death and loss are easier to deal with. More cut and dried. How can you deal with something that is so unpredictable, different every day, and for me it’s the knowledge that every day something is eating away at my husband. That means it is eating away at me to.
I know you have the strength Francy, sometimes you will have patience and sometimes you won’t. That’s ok, as I said, you are human not a robot. You care, that is why all this is so hard for you.
Please take care of yourself. If you don’t then you can’t be there for JH.
It’s so good to talk to you, please let me know how the GP appointment goes. I look forward to hearing from you.
Much love, Barbara xx

 

[Sad Staffs]

Good morning, you sound like me a little broken, bits just keep getting chipped off till there's a big chunk missing and you just get too tired to fight. Over the years I've faced many bad times and became strong for others relied on me and learned to hold my emotions in check, but this has made me a wreck, it's not always easy to hold the tears back. It's not just the dementia sufferers who are broken, we are too. XXXX

Francy, you probably do, but you should follow @kindred posts. They truly are an inspiration to me. I wish that I had Geraldine’s love, commitment and courage. So special.
So many of us are broken, because we love and care for our person with dementia. I hate it. I have had to cope with some really dreadful situations in my life. But nothing like this. Some might not agree, but I think we carers are more broken than the person with dementia. So often they are oblivious, but we are not. We get smacked in the face with it, time after time, day after day, and so it goes on....
Take care Francy, we are here with you. I believe it helps to express your true feelings on TP to people who truly understand what you are going through. With love, Barbara xx

 

[Sad Staffs]

Good morning dear friends on TP. My thoughts are with you as we all struggle on trying to do our best as we watch our dear ones ‘disappear’. Trying to keep strong for a short time is difficult enough but when trials go on and on we need that extra little bit of comfort and support to go on, which our friends here do.

Good morning @Grahamstown it’s good to hear from you. Keeping strong is all we can do. It’s not easy day after day, but I know that I need to be stronger than I am now, that there is much worse to come. And, I worry about him so much.
Take care, love B xx

 

[kindred]

Francy, you probably do, but you should follow @kindred posts. They truly are an inspiration to me. I wish that I had Geraldine’s love, commitment and courage. So special.
So many of us are broken, because we love and care for our person with dementia. I hate it. I have had to cope with some really dreadful situations in my life. But nothing like this. Some might not agree, but I think we carers are more broken than the person with dementia. So often they are oblivious, but we are not. We get smacked in the face with it, time after time, day after day, and so it goes on....
Take care Francy, we are here with you. I believe it helps to express your true feelings on TP to people who truly understand what you are going through. With love, Barbara xx

Sweetheart, what a beautiful thing to say. Have just caught up with this. I agree with you, carers are more broken. It is an unimaginable life, like nothing else so thank God we have each other on here. At its worst, we are a slave to someone who is mad, incontinent and often violent. At its best, it can be, well, bearable.
Thank God for you and your loving encouragement.
with love and best, Geraldinexxxx

 

[Sad Staffs]

It didn’t take long for my husband to get selfish and aggressive.
I keep checking him for infection but there are no signs, no temperature, no shivering or sweating, he’s eating and drinking. His urinary inontinence is constant, but no urine retention, although his pads are a mess (not surprising with all his kidney and bladder problems).
Last night he was just difficult. He only thinks about himself, no thought for me and I’m still on crutches, so keeping him and our home going is very difficult.
He is wearing me down.
He screamed at me that I had him locked away in an asylum. I said it was a care home and I was in hospital having an operation. With venom he said that I had no consideration for him.
I don’t seem to have the patience or the will to play this game anymore.
I don’t understand that he can’t remember the routine of getting up, taking pyjamas off, removing night pads etc. He asked if he wore pads yesterday. I said you wear pads every day. He can’t pee normally, so he has to wear pads 24 hours a day. Why can’t he remember that.
But then he phones his brother and I sit and listen to this man I hardly recognise because he has a long interesting fluid conversation with him. No signs of dementia.
Why? Is it something I am doing wrong? Am I being a martyr to him?
Is my attitude today because I enjoyed a few days freedom. That is now how I think of it, freedom.
What is there to look forward to?
Not sure what the future holds, but I don’t think it’s good for him or for me.

 

[kindred]

It didn’t take long for my husband to get selfish and aggressive.
I keep checking him for infection but there are no signs, no temperature, no shivering or sweating, he’s eating and drinking. His urinary inontinence is constant, but no urine retention, although his pads are a mess (not surprising with all his kidney and bladder problems).
Last night he was just difficult. He only thinks about himself, no thought for me and I’m still on crutches, so keeping him and our home going is very difficult.
He is wearing me down.
He screamed at me that I had him locked away in an asylum. I said it was a care home and I was in hospital having an operation. With venom he said that I had no consideration for him.
I don’t seem to have the patience or the will to play this game anymore.
I don’t understand that he can’t remember the routine of getting up, taking pyjamas off, removing night pads etc. He asked if he wore pads yesterday. I said you wear pads every day. He can’t pee normally, so he has to wear pads 24 hours a day. Why can’t he remember that.
But then he phones his brother and I sit and listen to this man I hardly recognise because he has a long interesting fluid conversation with him. No signs of dementia.
Why? Is it something I am doing wrong? Am I being a martyr to him?
Is my attitude today because I enjoyed a few days freedom. That is now how I think of it, freedom.
What is there to look forward to?
Not sure what the future holds, but I don’t think it’s good for him or for me.

B I am so sorry. This was my big fear about respite, that if Keith went into it he would lose the routines upon which our lives at home depended. Yes, so far so good BUT by having no respite, I was broken completely. So I am glad you had your freedom. No my darling, you are not doing anything wrong. He is beyond fortunate to have you caring for him and I am hearing a note of can I do this any more coming in, which is a healthy thing to think.
This being able to be so say normal with others certainly is dementia, I have no idea how the brain does it. Or why. The damaged brain is a law unto itself, which makes it so hard for the rest of us.
Darling you have done so well, perhaps veering towards the time when you may need more respite, whatever he thinks of it.
with love and best, Geraldinexxx

 

[highland girl]

It didn’t take long for my husband to get selfish and aggressive.
I keep checking him for infection but there are no signs, no temperature, no shivering or sweating, he’s eating and drinking. His urinary inontinence is constant, but no urine retention, although his pads are a mess (not surprising with all his kidney and bladder problems).
Last night he was just difficult. He only thinks about himself, no thought for me and I’m still on crutches, so keeping him and our home going is very difficult.
He is wearing me down.
He screamed at me that I had him locked away in an asylum. I said it was a care home and I was in hospital having an operation. With venom he said that I had no consideration for him.
I don’t seem to have the patience or the will to play this game anymore.
I don’t understand that he can’t remember the routine of getting up, taking pyjamas off, removing night pads etc. He asked if he wore pads yesterday. I said you wear pads every day. He can’t pee normally, so he has to wear pads 24 hours a day. Why can’t he remember that.
But then he phones his brother and I sit and listen to this man I hardly recognise because he has a long interesting fluid conversation with him. No signs of dementia.
Why? Is it something I am doing wrong? Am I being a martyr to him?
Is my attitude today because I enjoyed a few days freedom. That is now how I think of it, freedom.
What is there to look forward to?
Not sure what the future holds, but I don’t think it’s good for him or for me.[/QUOTE

Oh Barbara it’s so hard, you’ve just had your operation of course it’s going to get to you more at the moment. We shouldn’t have to go through their moody aggression, but we do have to remember they are ill. It is frustrating how they can be nice to other people though. In the real world we could say he may be frustrated and angry with himself that he can’t do more for you, seeing you with the crutches may be a reminder how helpless (in the nicest possible way) he is. I was ill a few weeks ago my OH sat at the side of me to comfort me I think but he’s was so distressed and agitated banging with his fists on the sofa it was making me worse he thought he was helping. Is he on medication for his aggressiveness, my OH was terrible, they put him on mementine but tried to reduce his rivastigmine patches which made him worse, but we increased his patches again he is now on both medications which helped significantly. Hang in there, if you really are struggling it may be worth considering another stretch of respite in a few weeks it would give you something to look forward to. Lots of love Shirley xx

 

[highland girl]

Hi @Sad Staffs
I replied to previous post but it went wrong somehow if you expand on it you will see my reply. Shirley xx