Loving my husband less

[sunshine chrissy]

What I would say to all is this. It seems that like all on this portal the carers through a sense of love, duty, faithfullness to marriage vows, all of us plow on doing ourselves huge mental damage, So very many times my daughter said 'dad you cannot carry on like this it's going to kill you'. When I finally acknowledged that I really could not go on I felt such huge sorrow, grief. A feeling that I was running away from caring for the woman I loved so very dearly and still do. What I am coming to realise is that my wife is now receiving a level of care that I could not match. So although there is still a huge hole in my life I am coming to terms with the idea that I have not run, I have ensured her care and that is what I promised on our marriage. Doesn't stop my daily anguish but we all have to care for ourselves as well.

This is exactly how I feel now,every word you've written.I feel lucky in a way that I've got the care I need for my husband,when I read others stories on here I'm shocked with what they have to put up with and live with daily.I'm thinking it depends what area you live in or if you're fortunate enough to get someone on your side as we did with our mental health nurse,she's been brilliant,fighting for us,phoning me weekly,I couldn't ask for more.

 

[Veritas]

Thank you so much for your reply. The problem we seem to have is that, even though my OH no longer has capacity, has no short term memory and could not look after himself long term, he can still dress himself, feed himself and is not incontinent and therefore he is not considered to be ready for permanent care. So I have been told that if I leave because of his aggression and abuse then we would have to divide our assets - which is our home. Fortunately the Risperidone has calmed him down, but it has been a nightmare experience.

Just because he remains physically relatively independent - although I assume you have to supervise and remind him to do these things - it does not mean residential care would be inappropriate. His mental state and behaviour matter too - if anything, what you describe is far more of an issue than incontinence would be. Telling you that if you leave because of his aggression and abuse you would have divide your assets is just plain wrong, in all sorts of ways. This is someone trying to protect their budgets and intimidate you into carrying on being his carer even when you feel at risk - even if the medication is working for now, that could change and you need to know that you will be safe if or when it does.

 

[Kath610]

Just because he remains physically relatively independent - although I assume you have to supervise and remind him to do these things - it does not mean residential care would be inappropriate. His mental state and behaviour matter too - if anything, what you describe is far more of an issue than incontinence would be. Telling you that if you leave because of his aggression and abuse you would have divide your assets is just plain wrong, in all sorts of ways. This is someone trying to protect their budgets and intimidate you into carrying on being his carer even when you feel at risk - even if the medication is working for now, that could change and you need to know that you will be safe if or when it does.

I have been following this,@Veritas and @JaxG - everything you say Jax describes my husband too. I had a call from Adult Social Care a while ago ( they have been useless so far) and all they wanted to ask about was our financial status to arrange an assessment. Protecting their budget, as you say Veritas! Thank you for the sensible and heartening advice.
Isn't it strange how many of the conversations on here take place very late at night or very early in the morning?

 

[Skylark/2]

Hello @Kath610 and all the helpful people who have posted here. Latest update.
We had a home visit from a dr. at our local Memory clinic this morning. He was here for almost an hour, asking my husband a lot of questions and some to me. Of course my husband was Mr Reasonable but looked to me to supply some of the answers….I didn’t, let him dig his own big hole. The result was he is going to be started on Memantine after a blood test to see if his kidneys are o.k. Husband will have a review in 6 months and we have assurances that the community psychiatric nurse will keep in touch. All in all I’m pleased with the outcome.
Tomorrow I take him for a CT scan on his pancreas, ( 2 week cancer referral which ha been given within a week, thank you NHS ) possibly back to the surgery on Friday as husband is increasingly concerned about a temple headache!
Son might be paying a flying visit on Saturday, ‘to see how I’m managing’ ……his words!

 

[jennifer1967]

Hello @Kath610 and all the helpful people who have posted here. Latest update.
We had a home visit from a dr. at our local Memory clinic this morning. He was here for almost an hour, asking my husband a lot of questions and some to me. Of course my husband was Mr Reasonable but looked to me to supply some of the answers….I didn’t, let him dig his own big hole. The result was he is going to be started on Memantine after a blood test to see if his kidneys are o.k. Husband will have a review in 6 months and we have assurances that the community psychiatric nurse will keep in touch. All in all I’m pleased with the outcome.
Tomorrow I take him for a CT scan on his pancreas, ( 2 week cancer referral which ha been given within a week, thank you NHS ) possibly back to the surgery on Friday as husband is increasingly concerned about a temple headache!
Son might be paying a flying visit on Saturday, ‘to see how I’m managing’ ……his words!

your son is cheeky. hopefully the memantine will work. you will have to give it time as it goes up in 5mg stages each week. hope the scan goes ok too.

 

[Sarasa]

That is a small step in the right direction, @Skylark/2, but only a very small one. Please do contact the police or the emergency safeguarding team if your husband kicks off again. Your well-being and safety are just as important as his.

 

[Firecatcher]

It’s a baby step forward although certainly not the outcome I’d want as there’s no guarantee Memantine will make any significant difference and in the meantime you still have all the problems to deal with. I’d imagine contact from the community psychiatric nurse won’t be all that frequent either. As another poster has said call the police if you feel threatened or unsafe. If they can get your husband out of the house they could detain him under section 136 of the mental health act which would mean he’d be assessed in hospital.

 

[Kath610]

Hello @Kath610 and all the helpful people who have posted here. Latest update.
We had a home visit from a dr. at our local Memory clinic this morning. He was here for almost an hour, asking my husband a lot of questions and some to me. Of course my husband was Mr Reasonable but looked to me to supply some of the answers….I didn’t, let him dig his own big hole. The result was he is going to be started on Memantine after a blood test to see if his kidneys are o.k. Husband will have a review in 6 months and we have assurances that the community psychiatric nurse will keep in touch. All in all I’m pleased with the outcome.
Tomorrow I take him for a CT scan on his pancreas, ( 2 week cancer referral which ha been given within a week, thank you NHS ) possibly back to the surgery on Friday as husband is increasingly concerned about a temple headache!
Son might be paying a flying visit on Saturday, ‘to see how I’m managing’ ……his words!

Hello @Skylark/2 , glad to see this and I hope the Memantine helps. My husband has been on it alongside the Donepezil for just over a month now, he's on 15mg from tomorrow so has one more 5mg step to go, and it is making a difference. I really hope it will be the same for you.
Thinking of you and best wishes for the other tests xx

 

[Skylark/2]

Hello @Skylark/2 , glad to see this and I hope the Memantine helps. My husband has been on it alongside the Donepezil for just over a month now, he's on 15mg from tomorrow so has one more 5mg step to go, and it is making a difference. I really hope it will be the same for you.
Thinking of you and best wishes for the other tests xx

After a ’ successful’ day yesterday I feel I am back to square one!
we went to bed at 9 p.m and have been awake since 11.30 p.m! Husband just won’t sleep, up and downstairs all night. He thinks someone has taken the car, even though he can see the car is on the drive……..’ well they have returned it ‘ he says. He is getting more and more agitated, looking for phone numbers so I can contact them and tell them to stop taking our car!. I mentioned the lack of sleep to the memory clinic dr. yesterday but he didn’t make any comment. Think I’ll try the g.p today and see if I can get a short course of sleeping tablets, neither of us can function through the day like this. The lack of sleep has been going on for months, but has suddenly got worse the last few days.
We have an appointment fora scan today, I’m wondering if he’ll be too agitated to lay still for it!

 

[canary]

I hope you can get the scan done today and get some answers.

You cant go on like this
(((((((((((((((((((((((((hugs))))))))))))))))))))

 

[Skylark/2]

Hi @canary .
Thank you for your reply. Today’s scan is on his pancreas. He was recently diagnosed with diabetes and the nurse was concerned about his weight loss. A 2 week referral was sent ( this was last week ) and an appointment was offered for today. The referral was query pancreatic cancer…….another thing for me to worry about! I’m dead on my feet, think I’ll start on the Xmas Quality Street!

 

[canary]

Try not to worry until you know the result.

It might be worth considering at this stage, though, whether you want him to go for treatment or not, if it does turn out to be cancer
(((((((((((((((((((((((((hugs))))))))))))))))))))))

 

[Mobbin17]

The nights are SO long and lonely but I thank you for reading and understanding.
He has calmed down now but has been up and downstairs since 2.30 a.m ( as have I ) getting me a coat, scarf, gloves ready for my departure!?!? I have told him I’ll go when it gets light. Go where, I’ve no idea, I’m 77 married for 53 years and have known him since I was 16. I have no family close by, my husband’s family have drifted away since his dementia diagnosis, friends few and far between ( we didn’t need anyone else, we had each other! ) , God I sound pathetic.
The sad thing is I know it will get worse as dementia grips, God give me strength

You are not pathetic. You are amazing and magnificent. I lost my Mum before she got to this stage and I thought life was tough even then . I cannot imagine how you cope with this . I can do nothing but send you my love x

 

[JaxG]

What I would say to all is this. It seems that like all on this portal the carers through a sense of love, duty, faithfullness to marriage vows, all of us plow on doing ourselves huge mental damage, So very many times my daughter said 'dad you cannot carry on like this it's going to kill you'. When I finally acknowledged that I really could not go on I felt such huge sorrow, grief. A feeling that I was running away from caring for the woman I loved so very dearly and still do. What I am coming to realise is that my wife is now receiving a level of care that I could not match. So although there is still a huge hole in my life I am coming to terms with the idea that I have not run, I have ensured her care and that is what I promised on our marriage. Doesn't stop my daily anguish but we all have to care for ourselves as well.

You sound like a wonderful husband who has done all he can do. There does come a time when you can no longer give the PWD what they need. ❤️

 

[JaxG]

I am saddened by what you say. My wife at the time of her being deemed ready for permanent care home residency. Apart from behaviour previously described sat all day in bra, knickers and a dressing gown, when hot no gown. She mostly didn't bathe or wash her hair, she always maintained that she had if I broached the matter, I had sufficient problems without creating a confrontation that was unwinable. Getting her to change her underwear was a major struggle as she also slept in it. She would not co-operate with carers who at one point had been arranged to try and overcome these matters. We had a Consultant Geriatric Doctor who called on us on a fairly regular basis, Social Worker. It was the Social Worker who suggested that I should consider residential care. I own my own home, a modest bungalow, live on my pensions, don't consider myself affluent but am paying nothing for my wifes care. So what you describe does seem hugely at variance with my experience. I think you need to seek advice.

Thank you @Mike Doncaster for your reply. My OH won't change his clothes, sleeps in his underwear, will bath if I remind him but not wash his hair, but everything is a battle that I just don't have the energy or will to fight. He has no short term memory and the questions start from the moment I wake up until I go to bed, and he has no ability to 'think' so everything he does is on me. He can feed himself but only if food is put in front of him, but because he is no longer violent or aggressive and is physically able, we have been signed off from any support. I am supposed to get 8 weeks respite a year, but the care home is booked up so this is not going to happen. That still leaves 10 months with no support at all.
I have noticed a steep decline in his abilities in the last 6 months so I do believe that we will be asking for more help soon - I will bear in mind what you have said and get some advice at that time.

 

[JaxG]

Just because he remains physically relatively independent - although I assume you have to supervise and remind him to do these things - it does not mean residential care would be inappropriate. His mental state and behaviour matter too - if anything, what you describe is far more of an issue than incontinence would be. Telling you that if you leave because of his aggression and abuse you would have divide your assets is just plain wrong, in all sorts of ways. This is someone trying to protect their budgets and intimidate you into carrying on being his carer even when you feel at risk - even if the medication is working for now, that could change and you need to know that you will be safe if or when it does.

Thank you @Veritas I agree with what you say. He has deteriorated a lot over the last 8 months and I do think I will be asking for help again very soon!!

 

[JaxG]

Hello @Kath610 and all the helpful people who have posted here. Latest update.
We had a home visit from a dr. at our local Memory clinic this morning. He was here for almost an hour, asking my husband a lot of questions and some to me. Of course my husband was Mr Reasonable but looked to me to supply some of the answers….I didn’t, let him dig his own big hole. The result was he is going to be started on Memantine after a blood test to see if his kidneys are o.k. Husband will have a review in 6 months and we have assurances that the community psychiatric nurse will keep in touch. All in all I’m pleased with the outcome.
Tomorrow I take him for a CT scan on his pancreas, ( 2 week cancer referral which ha been given within a week, thank you NHS ) possibly back to the surgery on Friday as husband is increasingly concerned about a temple headache!
Son might be paying a flying visit on Saturday, ‘to see how I’m managing’ ……his words!

Fingers crossed things begin to improve soon, enjoy seeing your son and I hope he can see how tough it is for you xx

 

[Skylark/2]

After a ’ successful’ day yesterday I feel I am back to square one!
we went to bed at 9 p.m and have been awake since 11.30 p.m! Husband just won’t sleep, up and downstairs all night. He thinks someone has taken the car, even though he can see the car is on the drive……..’ well they have returned it ‘ he says. He is getting more and more agitated, looking for phone numbers so I can contact them and tell them to stop taking our car!. I mentioned the lack of sleep to the memory clinic dr. yesterday but he didn’t make any comment. Think I’ll try the g.p today and see if I can get a short course of sleeping tablets, neither of us can function through the day like this. The lack of sleep has been going on for months, but has suddenly got worse the last few days.
We have an appointment fora scan today, I’m wondering if he’ll be too agitated to lay still for it!

Well we are back from having the

After a ’ successful’ day yesterday I feel I am back to square one!
we went to bed at 9 p.m and have been awake since 11.30 p.m! Husband just won’t sleep, up and downstairs all night. He thinks someone has taken the car, even though he can see the car is on the drive……..’ well they have returned it ‘ he says. He is getting more and more agitated, looking for phone numbers so I can contact them and tell them to stop taking our car!. I mentioned the lack of sleep to the memory clinic dr. yesterday but he didn’t make any comment. Think I’ll try the g.p today and see if I can get a short course of sleeping tablets, neither of us can function through the day like this. The lack of sleep has been going on for months, but has suddenly got worse the last few days.
We have an appointment fora scan today, I’m wondering if he’ll be too agitated to lay still for it!

well we had the scan today and it went o.k in spite of us being shattered through lack of sleep! I sent another email tothe memory clinic, apologising for contacting them so soon after yesterday’s meeting Explaining how difficult it had been overnight And asking for advice. Haven’t replied yet!We got back from the hospital and he seemed ‘ out of sorts!’ , had a nap and woke up in a foul mood! I went out then before he could explode but when I returned he’d written an A4 size paper detailing all my faults when taking him for appts, taking over, not telling him results etc., I was so angry with him, I was SO tired, he expected to be told the result ofthe scan immediately today and wouldn’t accept that the result would eventually go to the surgery, not to us. So ungrateful and so different from when he was being so reasonable when talkingto the dr. yesterday, I went walking the streets in the dark. Sorry for the rant, I‘m off for an early night.
He wants to see a dr. tomorrow about his temporal headache, guess who is expected to sort it out, am tempted to say ‘ you sort it, I wouldn’t dream of interfering! ‘

 

[Greenway]

Have had another tough weekend.
My husband is getting increasingly aggressive, I am waiting to see if the memory clinic will start him on Memantine. I am going to send the community nurse yet another email, stress how I am getting so anxious.
yesterday ( Saturday ) p.m his mood changed suddenly and it was because I drove ‘ his ‘ car and he couldn’t anymore and was stuck at home and I refused to take him anywhere ( 100% not true), we were out twice yesterday even though it was raining and Friday we were out for lunch. His accusations escalate, the abusive names starts, the threats, all what I have spoken about before. He’s going to sell the house, see me in the gutter
Today was a quiet day, he slept a while and complained of a headache in the afternoon. We had a day watching football on and off. More tele until 8 p.m, then he said he was off to bed ( increasingly early of late ) and I said I’d watch Antique Roadshow. He made a sarcastic. remark, went upstairs, immediately came back down, slamming doors. Internal alarm bells rang and I started to come to bed, trying to avert an arguement…….too late. It is now after 1a,m, I am resting fully clothed on the settee ( ready for escape? ) after being called the most Vile names, ordered to sit down, shut up, sleep in that room, sleep in this room, have had to sign a piece of paper saying I am staying temporarily ( I’m trying to diffuse the situation, doing anything he orders ) promise to obey the rules of the house , apologise and say how grateful I am. He’s taken my money, but I’ve hid my phone and bank cards. He says he won’t have me slagging him off day after day. Believe me it’s more than my life is worth to tell him it’sthe other way around! It’s unbareable, I.lay here dreading hearing movement from upstairs. I know it’s his dementia but this disease will drive us both to an early grave, Roll on morning and thanks for reading this .

This sounds exactly what I could have written 18 months ago, if I’d tried to explain it to anyone outside this circle I feel sure that they wouldn’t have believed it. The same vile words the same feeling of dread and the knowledge that it would be the same day after day. I was so lucky, the memory clinic recognised the danger that I was in and admitted him to a secure dementia unit. He’s taking risperidone, donepezil and memantine now and I’ve got my husband back. It took three months in hospital on a section 2 and section 3, which at the time broke my heart, the most difficult decision I’ve ever had to make was to leave him in the doctors hands. It was the best decision I could have made and now we’re living together peacefully. I hope that you’re as fortunate as I have been

 

[Kath610]

Well we are back from having the

well we had the scan today and it went o.k in spite of us being shattered through lack of sleep! I sent another email tothe memory clinic, apologising for contacting them so soon after yesterday’s meeting Explaining how difficult it had been overnight And asking for advice. Haven’t replied yet!We got back from the hospital and he seemed ‘ out of sorts!’ , had a nap and woke up in a foul mood! I went out then before he could explode but when I returned he’d written an A4 size paper detailing all my faults when taking him for appts, taking over, not telling him results etc., I was so angry with him, I was SO tired, he expected to be told the result ofthe scan immediately today and wouldn’t accept that the result would eventually go to the surgery, not to us. So ungrateful and so different from when he was being so reasonable when talkingto the dr. yesterday, I went walking the streets in the dark. Sorry for the rant, I‘m off for an early night.
He wants to see a dr. tomorrow about his temporal headache, guess who is expected to sort it out, am tempted to say ‘ you sort it, I wouldn’t dream of interfering! ‘

Hello @Skylark/2 , keep hold of that A4 sheet and make sure someone from the memory clinic sees it. Or someone from the local Alzheimer's Society or Adult Social Care. Ring the Memory Clinic and speak to someone rather than emailing them. And Don't apologise to them - you are asking them to do their job and repeated calls will emphasise the scale of your problem.
My husband is a lot calmer now but I'm under no illusion that the problem is solved. He is still a pain in the b** (well in mine anyway!) and I still have my escape strategies in place. If he started on again about selling the house I would be tempted to say - and have said - right go on then, it's in joint names so I will get half. I will use my half to rent somewhere and your half will go on care home fees because you would have difficulty looking after yourself.
Quite apart from the fact that he wouldn't know where to start, this seems quite a happy outcome as far as I'm concerned. I have a meeting set up with a representative from our local branch of the Alzheimer's Society on Monday, set up by the doctor from the Memory Clinic, to do a carer's assessment . My husband really can't see why I need one and will be earwigging like mad so I will prepare a report in advance or send an email.
I have also set up - some time ago - a family WhatsApp group so I can keep my sons and daughters in law advised as to what's going on. That way they know exactly what things are like for both of us and my husband has no knowledge of what's being said. Would that be of any use to you?
So on to another day! Looking after the grandsons again so out with the trains and Megablocks for my husband to hog while the toddler plays with something else because he can't get a look in. Thinking of you and best wishes xx