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Who has stolen my husband?

canary

Registered User
Feb 25, 2014
12,592
South coast
It is the disruption of his routine that is doing it.
You have not been able to get back into the normal routine because you are still on crutches and are probably having to ask him to do more. Its too much for him - he cant handle it. The lack of his normal routine is shining a spotlight on his difficulties that a routine would normally smooth over.
Thank goodness he was not with you during the immediate recovery - his anxiety would have been through the roof.

((((((((((((((((((((hugs)))))))))))))))))) As you improve, he will too.

PS - the conversation with his brother would have been done using "host mode" and "host mode" cant be maintained for long as it takes a lot of effort and usually leaves them tired and grumpy.
 

Sad Staffs

Registered User
Jun 26, 2018
677
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
Thank you Geraldine. He is calm at the moment, but he blows up without any warning. I swear he falls out with himself!
I wish I could understand what is going on, where it is taking us, how long until it takes the next downward step? What the next step holds?
But none of us do.
I don’t know what I would do without people like you Geraldine. It’s such a lonely existence, but then you already know that.
It’s the lack of not knowing what tomorrow brings, yet knowing that tomorrow is likely to be the same as today!
With much love to you, Barbara xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
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
Hi Shirley,
Thank you for your post, especially when I now know you are worrying about your husbands vomiting. I do hope he is ok x
They can’t/won’t medicate because of the state of his kidneys. Apparently he is unlikely to excrete whatever needs excreting. I’m not surprised, his kidneys are in a dreadful state and of course he has had aggressive bladder cancer for 8 years.
He does take Mirtazapine. This helps him sleep. So it is a life saver for me. At least I know I have between 10 and 7 in the morning. Even if I can’t sleep, it’s just peaceful. Actually I spend a good chunk of that time worrying about everything! It’s like my mind at night is an express train, it goes from station to station but never stops!
I doubt as things stand that I will be getting more respite in the foreseeable future.
But my thoughts are with you. I hope you get to enjoy your week. I hope nothing upsets the break that you need and so deserve.
With love, Barbara xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
It is the disruption of his routine that is doing it.
You have not been able to get back into the normal routine because you are still on crutches and are probably having to ask him to do more. Its too much for him - he cant handle it. The lack of his normal routine is shining a spotlight on his difficulties that a routine would normally smooth over.
Thank goodness he was not with you during the immediate recovery - his anxiety would have been through the roof.

((((((((((((((((((((hugs)))))))))))))))))) As you improve, he will too.

PS - the conversation with his brother would have been done using "host mode" and "host mode" cant be maintained for long as it takes a lot of effort and usually leaves them tired and grumpy.
Thank you, always thank you for your wise words and support.
He is calm at the moment, but he is really struggling with sorting things out in his mind. It’s like there is a big block, or lots of small blocks, stopping his thought process. He tries, but can’t find the word or the thought that he wants.
I just wish I understood more.
I think he has deteriorated quite a lot since he was diagnosed in July, I don’t know whether I should ask them to see him again?
Is there any point if they won’t medicate? I don’t know.
At the moment he is worrying about my physio next week. He keeps looking at the information they have sent me, the form I have to fill in. He must have looked at it a number of times this afternoon. Then just gives it back to me saying it is of no help to him.
I will take comfort from your words ‘as you improve, he will to’, thank you.
Love B xx
 

AliceA

Registered User
May 27, 2016
2,825
Dearest B, you certainly not doing anything wrong. Sounds as if he is upset, confused and hitting out at the one person who loves him because he feels safe to do so. Other people are not safe and would run - Even with a crutch. With his brother he was hosting, this is so tiring so he was probably worse than ever.

We went out to a village Christmas lunch, mine loved it he was quieter that he used to be but he was singing along. However today, he forgot where things were, I had to write down the information he needed.
Even though up late he was so tired today after the lunch out.
For me we did go out, my daughter was there so I could relax over the dysphagia.

People were surprised they had not seen us much. There said how well he looked!

We do our best, that is all we can do. Sending a hug, xxx

PS. REMEMBER MANY OLDER PEOPLE DO NOT SHOW TYPICAL SIGNS OF INFECTION. I.E.
RAISED TEMPERATURE. ETC.
 

Sad Staffs

Registered User
Jun 26, 2018
677
Dearest B, you certainly not doing anything wrong. Sounds as if he is upset, confused and hitting out at the one person who loves him because he feels safe to do so. Other people are not safe and would run - Even with a crutch. With his brother he was hosting, this is so tiring so he was probably worse than ever.

We went out to a village Christmas lunch, mine loved it he was quieter that he used to be but he was singing along. However today, he forgot where things were, I had to write down the information he needed.
Even though up late he was so tired today after the lunch out.
For me we did go out, my daughter was there so I could relax over the dysphagia.

People were surprised they had not seen us much. There said how well he looked!

We do our best, that is all we can do. Sending a hug, xxx

PS. REMEMBER MANY OLDER PEOPLE DO NOT SHOW TYPICAL SIGNS OF INFECTION. I.E.
RAISED TEMPERATURE. ETC.
Dear Alice, it’s lovely to hear from you.
I’m glad you managed to get to the village Christmas lunch, you said your husband was quieter than usual, albeit singing along, but I hope you too managed to enjoy it.
I smiled at your comment that people were surprised how well your husband looked. My son and his wife came down from Durham. When I spoke to him the next day he said he was surprised how well my husband looked. This really irritates me :(! It’s as if people don’t believe me.
I’ll bear in mind that he might not show typical infection signs. He is due a urine test in 2 weeks, but if needed I won’t wait that long. Always a worry with the long Christmas and new year break.
Take care Alice, love B xx
 

AliceA

Registered User
May 27, 2016
2,825
Mine gets chest infection first sign is very odd behaviour and/collapse so I have to judge changes and start antibiotics. I keep some to hand, they are strong and we realise they will not work forever. So just one day at a time!
Yes, looks are deceiving, just shows what good care we give!
I hope things settle soon. love, Alice
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,337
Kent
When I spoke to him the next day he said he was surprised how well my husband looked.
People with dementia often do look well especially if they are well cared for. Their illness only seems to show in their faces towards the later stages . It might be an idea to observe how well their carers look.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
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
Thank you Barbara, you are so right, we are broken. I truly love and care for JH, looking after him now is a daily challenge, I try each day to keep him happy and content and there's nothing left of me at the end of the day, I'm so tired and exhausted and no end in sight. I think we are all probably grieving for the life that should have been.
XXXX Francy
 

Francy

Registered User
Dec 3, 2018
70
Co Down
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
Hello again Barbara, thank you for making me feel a little better, I do beat myself up because I can't make JH happy no matter how hard I try, I think if he's happy he won't turn demon on me. He is very mellow at the moment, I think he is more accepting of his problem, but has said he doesn't want to see doctor until after Christmas. I don't want to push him for that really sets him off and it's only a week really, who wants to hear the week before Christmas they have this horrible disease. So I will wait, after all that all we do now is wait.
How are you Barbara, I hope you get a little respite over the festive season. We probably all want the same for Christmas, a little peace and happiness, I hope you find some.
XXXX Francy
 

Francy

Registered User
Dec 3, 2018
70
Co Down
Oh @AliceA ... to get that wink of an eye, that must have been a lovely surprise. So special.
All of the rest of your post I can relate to.
It’s such a lonely existence isn’t it?
We are living a life we don’t want, but what is the alternative?
I feel lost and lonely. I dread the future, and then think, what future?
Take care Alice, love B xx
Hello Sad Staffs, reading your words here are an echo of my own thoughts, yes this is a lonely existence and I so don't want this to be my life, I too am lost ,lonely and not only dread the future but am terrified of it. When I awake in the morning I think of the day ahead and I cry, not for long-no point, my anxiety levels are high constantly and there is no escape . For me one of the worst parts is not being able to go out, not even to shop, I miss companionship, this is not a life at all. JH has so many worries and they are extreme, paranoid really and I just don't know the person he now is, like living with a stranger. We are alone but not alone. I feel for you Sad STAFFS for you are living my sad life. XXXX Francy
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
@Sad Staffs hi Barbara, I haven’t been on for a few days and notice you haven’t either, I hope you are ok and managing reasonably well. Hope your OH is settling a little better now he has been home for a week. My OH is still in hospital being treated for bleed on stomach, but is as well as can be expected. Most of my time is spent at the hospital but I am determined to do some Christmas shopping today as I haven’t done any yet. Thinking about you, lots of love Shirleyxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
I haven’t been on for a while. I think the past few weeks have caught up with me. I’m desperately trying to ignore Christmas. Impossible, when I have always loved Christmas, planned, shopped, decorated, loved. But not this year. The most that will happen is my Sainsbury’s online shop should be delivered containing food for the festive period. I’m ashamed of myself, but I can’t see the point, we will see very few, it will be just the two of us most of the time. I feel like Scrooge!
I haven’t been sleeping well at all, I get off to sleep, but wake at around 2, and that’s it. But last night I didn’t get to sleep, then had a panic attack. I’m assuming that is what it was. I’ve had these before but never like this. I couldn’t breathe, my chest was tight, my pulse racing, and I started sweating. I sat up, added a pillow, took it away again. Those feelings came and went until the alarm went off. So not feeling too bright today, but, hey.... what’s new!
My husband is quieter at the moment. I never know whether I should take some of the blame for his angry outbursts, as I know I could do more by not reacting.
But he wakes up every morning with a new nugget of a topic. Yesterday it was asking about getting hearing aids, today it was headphones. The alarm goes off and he always asks do I stay here?. I say yes until I have had my wash. Then the topic arrives. We seem to have one every day and only in the early morning, always different, never from anything we have been discussing, and I don’t know why? Is this something others have experienced? I’ve learned not to quiz... just to say we will talk about it later.
Thank you to everyone who reads this post.
With love, B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Thinking of you @Sad Staffs when I read your posts, it’s a big haul through this disease xx
Thank you for being there, love B xx
@Sad Staffs hi Barbara, I haven’t been on for a few days and notice you haven’t either, I hope you are ok and managing reasonably well. Hope your OH is settling a little better now he has been home for a week. My OH is still in hospital being treated for bleed on stomach, but is as well as can be expected. Most of my time is spent at the hospital but I am determined to do some Christmas shopping today as I haven’t done any yet. Thinking about you, lots of love Shirleyxx
Hi Shirley, I hope your OH stomach bleed can be brought under control very very soon. So much to worry about isn’t there. And I hope you manage to get your Christmas shopping done. Don’t knock yourself out... people will understand if they care about you.
Take care, love to you, B xx
 

AliceA

Registered User
May 27, 2016
2,825
Oh, B, I hope you are feeling better always worse in the middle of the night.
I have not been out except taken to a couple of events with my husband,
I too shop on line.
The Christmas Cards were a disaster, I chose a design of London scenes familiar to our roots.
Glitter was not mentioned, it was everywhere, I do not want that as my message! I was going to throw them out then found there was no guarantee the next lot would be better. So I wasted time brush them off!

Really I needed these invitations like a hole in the head! My husband seemed to get something out of the events.
What I needed was a bit of support and a lift to go out on my own!
Still people are kind, so I accept with gratitude for that.
Can't really feel it is Christmas a week away.
Yes, we sometimes have an issue that absorbs the conversation. Eventually that is satisfied but then something else. Must go, Woman's hour talking about Carers in a Home. Xxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hello Sad Staffs, reading your words here are an echo of my own thoughts, yes this is a lonely existence and I so don't want this to be my life, I too am lost ,lonely and not only dread the future but am terrified of it. When I awake in the morning I think of the day ahead and I cry, not for long-no point, my anxiety levels are high constantly and there is no escape . For me one of the worst parts is not being able to go out, not even to shop, I miss companionship, this is not a life at all. JH has so many worries and they are extreme, paranoid really and I just don't know the person he now is, like living with a stranger. We are alone but not alone. I feel for you Sad STAFFS for you are living my sad life. XXXX Francy
i know Francy, it’s such a tough existence. We need to develop a thick skin, but never seem to manage it. So much hurt at what we have lost, and so much dread for our future. No one understands unless they have experienced it.
I do understand your feeling of no escape, not to just go out shopping, meet friends, etc, and the lack of companionship from your OH is soul destroying and heartbreaking.
Try to stay strong for your own well being and self preservation. Easy for me to say but I don’t practice what I preach! Not sure I will ever be the person I once was.
Take care of yourself Francy, love B xx
 

rhubarbtree

Registered User
Jan 7, 2015
494
North West
Hi Sad Staffs,
Sorry to hear about your non sleeping. I wake at 3.30 every day, wide awake and ready to go. Spend a few hours lying in bed playing solitaire and reading my newspaper on ipad. I used to be able to have an afternoon nap but need to watch OH closely so that has gone. Do sometime crash out watching TV. Missed most of Strictly and Sports Personality this weekend.

My OH does not have topics to discuss with me as yours but he does talk in his sleep. He talks as if he is in a group (at the 19th hole I presume) just general chit chat, agreeing and laughing. I am glad he has some inner life because the outer one is pretty boring and worrying for him.

I am with you on Christmas. Last year I did fight with our tree (OH used to do it) but hated it sitting there looking all jolly so took it down on Boxing Day when no more visitors expected. The plan was to take it to a charity shop for someone else to enjoy but I seem strangely reluctant as if I expect the good times to return.

I covered my experience with respite in my own thread but have come to the conclusion that I do an excellent job, despite my bad temper, and I am sure you do too. OH is up showered, shaved, had a good breakfast and is resting from the exertion. Later he will get a drive out to the library and a couple of shops. Perhaps call in to see family for a cup of tea. If asked if he wanted to do any of this he would say NO, but I feel he needs to keep being part of society.

You have not mentioned your recovery but I hope it is going well. It is no wonder you have panic attacks with all the responsibility but do mention it to the doctor. I had a child in my class once who had panic attacks and he would breathe into a brown paper bag seemed to help him.
 

Sad Staffs

Registered User
Jun 26, 2018
677
Oh, B, I hope you are feeling better always worse in the middle of the night.
I have not been out except taken to a couple of events with my husband,
I too shop on line.
The Christmas Cards were a disaster, I chose a design of London scenes familiar to our roots.
Glitter was not mentioned, it was everywhere, I do not want that as my message! I was going to throw them out then found there was no guarantee the next lot would be better. So I wasted time brush them off!

Really I needed these invitations like a hole in the head! My husband seemed to get something out of the events.
What I needed was a bit of support and a lift to go out on my own!
Still people are kind, so I accept with gratitude for that.
Can't really feel it is Christmas a week away.
Yes, we sometimes have an issue that absorbs the conversation. Eventually that is satisfied but then something else. Must go, Woman's hour talking about Carers in a Home. Xxx
Hi Alice, I hope you have banished the glitter up the vacuum. I still find glitter in 12 months time!
I’m interested to hear the woman’s hour programme. I’m waiting for a call from the Carers Hub as she is doing my assessment. We will wait and see if it is worth the bother. I’m a bit negative today!!
I’m glad you have been able to get out with your husband. It’s a break, but sometimes it can be hard work! Our going out is tomorrow.... physio!
Take care Alice, always good to talk to you, Love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi Sad Staffs,
Sorry to hear about your non sleeping. I wake at 3.30 every day, wide awake and ready to go. Spend a few hours lying in bed playing solitaire and reading my newspaper on ipad. I used to be able to have an afternoon nap but need to watch OH closely so that has gone. Do sometime crash out watching TV. Missed most of Strictly and Sports Personality this weekend.

My OH does not have topics to discuss with me as yours but he does talk in his sleep. He talks as if he is in a group (at the 19th hole I presume) just general chit chat, agreeing and laughing. I am glad he has some inner life because the outer one is pretty boring and worrying for him.

I am with you on Christmas. Last year I did fight with our tree (OH used to do it) but hated it sitting there looking all jolly so took it down on Boxing Day when no more visitors expected. The plan was to take it to a charity shop for someone else to enjoy but I seem strangely reluctant as if I expect the good times to return.

I covered my experience with respite in my own thread but have come to the conclusion that I do an excellent job, despite my bad temper, and I am sure you do too. OH is up showered, shaved, had a good breakfast and is resting from the exertion. Later he will get a drive out to the library and a couple of shops. Perhaps call in to see family for a cup of tea. If asked if he wanted to do any of this he would say NO, but I feel he needs to keep being part of society.

You have not mentioned your recovery but I hope it is going well. It is no wonder you have panic attacks with all the responsibility but do mention it to the doctor. I had a child in my class once who had panic attacks and he would breathe into a brown paper bag seemed to help him.
Hi @rhubarbtree, thank you for your helpful message.
My husband has posters when he is so totally normal.... I will never understand. Then he turns and he is another person. So we did get to watch Strictly, we both voted on our iPads. Most of the time he can work his phone and pad, then, whoosh, it’s gone and I watch him trying to understand and he gives up.
It’s good that you both do get out for some normality. It’s my husbands incontinence that causes us most issues, and he is constantly on edge in case he gets wet. I do feel for him, he is still a proud man.
I’m doing ok, dressing off yesterday.... shower, yes!! Wound looks brilliant. Physio tomorrow. I need to strengthen muscles in left leg otherwise I will walk strangely. I’m still using crutches.
I’m hoping not to have to see the GP until the new year. Fingers crossed I will get some sleep and be oblivious!
Take care, love B xx
 

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