I love him dearly but I'm sick of him...............

[Sammyjo1]

Samaritans are there for you

I am concerned that there are a number of people on here who, quite understandably, are having suicidal thoughts and I just wanted to make sure that you are all aware of Samaritans who are there 24/7 to help support you and help you explore your feelings in total confidence and in a non-judgemental way

If you are in the UK you can call them on 116 123

If you are abroad, or if you would prefer not to talk, you can email them at
jo@samaritans.org.

More details at www.samaritans.org

Please don't ever feel you are on your own with your thoughts - Samaritans will always be there for you

 

[caqqufa]

Dear caqqufa and TP friends
I think that without this forum and your support/companionship in these desperate days, I might not survive. I'm not being melodramatic. I've never felt closer to swallowing the bag of pills in our medicine cabinet. Every principle I've grown up with, about how wholly wrong and cruel suicide is, is now well out of the window. What remains is knowing that D, wherever he is in his journey into the dark, still needs me if only at a practical level, knowing that my sister and family would be shattered - and knowing that you are out there, listening and helping and caring. I hope that one day I can be of the same use to you and others as you are now to me.

Of course you will survive:>) Remember that what we go through with this disease is similar to a grieving process, when we are gradually loosing those we love. BUT with this disease they still need us and the best thing to do is share the burden of care so that we can give them the best available. It's a super difficult time Marylil there's no denying. The more you love the more you hurt and you have a big heart. So go on loving him and give the best you can. xx xx hugs xx xx

 

[Ottoman68]

I've been in a similar situation for almost six years. For the first four of these, I kept my husband's health secret from almost everyone out of a misguided sense of loyalty. Then I started the process of obtaining a diagnosis. Initially, this was a relief but no longer.

His behaviour has deteriorated to that of a child who bursts into a stream of swear words whenever he can't get his own way. He is polite to acquaintances but mostly avoids friends.

He does not accept his diagnosis and is getting lazier and lazier as the months roll on. Mostly, he now just wants to eat (frequently) and doze in front of the television with no understanding or interest in the programmes but simply in adverts featuring young children with whom he clearly identified.

I have still (just) been able to persuade him to go for a daily walk. Physically, he is fine with good results for cholesterol, blood pressure, eye pressure etc. He's 74. Maybe he'll go on for years.

He's almost completed a course of 10 sessions at the memory clinic. They seem to have had absolutely no beneficial effect at all. When they are over, Singing for the Brain and a local social group for retired folk, will hopefully take their place.

I've started to look for a male companion to visit 5 times a week for 2 hours each time.

We've been together for 40 years. Only his physical appearance reminds me of past happiness with him.

I hope that I don't have another 6 years of worsening behaviour to look forward to! I do make sure, however, that I get frequent breaks from him. The nanny role was certainly not one I anticipated and, frankly, not one I welcome.

 

[caqqufa]

I have gone through this thread again and would like to add a couple of points:

1. The importance of facing up to the reality of the situation early and start working on organising help early. Most of us start looking around when we are so exhausted that even trying to get help is tiring

2. The importance of distinguishing between the person and the illness. I said '....I'm sick of him...' when in actual fact it's the illness I'm sick of.

3. Accepting what is. Once I made the distinction and accepted what is and then decided that I will look after him for as long as possible, things seemed to calm down somewhat. They are still sensitive to feelings so if I am angry and resentful those rubbed off on him too, which did not make for happy moments. Understandably it's a condition more difficult to deal with more than looking after someone with a broken leg. Well, this is a broken mind so it needs a different approach.

4. Hubby is now in hospital, he suffered a stroke last Monday. Went to see him and he didn't know me. That was hard even though I was expecting it. So I'm glad that although I was losing him gradually, with my change of attitude we still managed to have good quality moments together.

5. Let's keep on praying and supporting each other. HUGS TO ALL

 

[Izzy]

Thanks for giving us an update caqqufa. I'm so sorry to hear your husband has had a stroke. I'm glad that your acceptance has allowed you to have some good moments together.

Thinking of you both.

 

[marionq]

Things don't stay the same from start to finish with this illness so I too am glad of an update. A lot of pain and distress on this thread. Good points from Cacqufa.

 

[pamann]

Pamann

I admire you for looking after your husband when you were at breaking point.
Sorry to hear he is in hospital, please keep us updated.

 

[Reme]

I get it I really do. My husband has Mild cognitive impairment. Despite his specialist saying he's doing ok and not heading to alzheimers Myself and family know that he's getting worse. When he repeats himself constantly and asks the same questions umpteen times a day, can't remember what he did yesterday or sometimes that morning then there has to be something wrong.
He's been advised to be involved in social activities, to exercise and keep his brain active. He does nothing to help himself at all. Even been heard to complain if he's to visit his own daughter let alone the few friends we so have.
I am now at the stage where I am fed up of flogging a dead horse and will no longer try and get him out of the house a few times a week. I can find something to do as I have hobbies while he will sit in front of the tv or play sodoku on his ipad, no other brain games. I feel that if he's so worried about getting worse as he says he is then he must try and delay this dreadful disease. He is with me 24/7 as not at the stage where I can use respite care and he wouldn't go to Mens shed or day care.
Always wants to know what I am doing .
I supported him through his alcohol troubles for years and now this.
I feel bad feeling this way but I have given him so much of my life and now I have many things that I would like to do.
I can't leave him as that would mean his daughters would get stuck with him.
It's all very well people saying that I should talk to my doctor or someone else , but that's hard when my shadow is always there with me.
Thanks for this forum.

 

[tigerlady]

This is the first time I have read this thread and I so identify with you, caqquafa. I too felt suicidal, but not until my husband went into care. I had a breakdown looking after him and he was sectioned. It was then that I realised the full horror of the implications of this disease - the fact that he was never going to get better and that I was never going to get my lovely man back. It was then that I was at my lowest.

In the early days of him being in care in an awful care home, I seriously considered ending it all together with him, and I didnt tell anyone because I was seriously going to do it. However, I got through that phase and he is now in a wonderful care home which can cope with his aggrssion, and he is as settled as it is possible for him to be, although he still goes on about going "home" even now after 2 and a half years, but I know its not our home he wants, as he still asks about his long deceased mother and father. I still have periods of deep depression but I have rebuilt my life with the help of family and good friends and my lovely dog.

You have done well to keep your husband at home up to now, and cope this horrible disease. I often wonder if I could have coped better and still regret that awful day when I called for him to be assessed. I wish you strength to carry on and to deal with the awful day when you know its time for full time care.

 

[irismary]

I too supported my husband through alcohol problems and told him to go on several occasions and thought about leaving him but he was never horrible or nasty so we got through it. Now this and my Mom has Alzheimer's as well. Yes he goes to day care two days, yes he has a sitter but its me he wants 24/7. Fed up and bored with the drudgery of it all - no holidays, breaks, but worse no conversation or emotional support. Talk to doctor? One shrugged, the other told me to relax. No guidance on how things may progress, his 6 month post stroke follow up hasn't happened, promises (minor ones) made by social worker come to nothing. I was told I wouldn't be on my own when he had his stroke but basically I am. Sorry this wasn't meant to be a rant just an expression of frustration and sadness. I know others are far worse off but its so hard.

 

[gringo]

The importance of distinguishing between the person and the illness. I said '....I'm sick of him...' when in actual fact it's the illness I'm sick of.

Yes but there’s the rub, you don’t get one without the other. So the one you love and the thing you hate are inextricably linked. You find yourself loving and hating, at the same time, what confronts you. Unfortunately there will be a progression and dementia will become ever more dominant, and what disturbs me is that the hate may well increase and the loving feelings may become hard to hold on to.
Nobody without hands-on experience of this situation can have any real idea of the agony of it all. So, except for TP. there is simply nowhere else to go for understanding and support.

 

[Scarlett123]

What used to frustrate me, and still does, is that many other people, who aren't affected by AD, seem to think that there's lots of help out there for carers! It may well be that in Blankshire they provide free incontinence pads or pants, and in Somewherelseshire they have a generous care-sitter service, whilst in WhoKnowsWhereshire they have wonderful clubs and respite facilities, and Social Workers who phone you back, and GPs that go the extra marathon, let alone a mile- but these things aren't available nationwide, and, certainly in our case, the only person who was going to find out about anything was me.

I've never felt so lonely, exhausted and ground down, as when I was a carer. The precious "me-time" when John was at a Day Centre, had to be split between doing the never ending laundry, the housework, and everything else, making endless phone calls, waiting for the promised return calls that never happened, and trying to get a bit of sleep.

It may well be that the services that could help are under-funded, but it's the easiest thing in the world to spend someone elses money, and perhaps if these funds were managed better, there might be more to go round. Looking after someone with AD for a month is tiring enough, so why carers are expected to cope for dozens of months, without complaint, is beyond me.

 

[Sunseeker1977]

What used to frustrate me, and still does, is that many other people, who aren't affected by AD, seem to think that there's lots of help out there for carers! It may well be that in Blankshire they provide free incontinence pads or pants, and in Somewherelseshire they have a generous care-sitter service, whilst in WhoKnowsWhereshire they have wonderful clubs and respite facilities, and Social Workers who phone you back, and GPs that go the extra marathon, let alone a mile- but these things aren't available nationwide, and, certainly in our case, the only person who was going to find out about anything was me.

I've never felt so lonely, exhausted and ground down, as when I was a carer. The precious "me-time" when John was at a Day Centre, had to be split between doing the never ending laundry, the housework, and everything else, making endless phone calls, waiting for the promised return calls that never happened, and trying to get a bit of sleep.

It may well be that the services that could help are under-funded, but it's the easiest thing in the world to spend someone elses money, and perhaps if these funds were managed better, there might be more to go round. Looking after someone with AD for a month is tiring enough, so why carers are expected to cope for dozens of months, without complaint, is beyond me.

Spot on!!! I couldn't have put it any better ..... you completely capture the feeling of the despair and frustration that I and many more carers are feeling right now!!!!

 

[Sunseeker1977]

Ours is a world of total conflict .... I too love my wife dearly but I despise dementia and what it is doing to her!! My once warm affectionate understanding fun loving wife is no more!! She has no understanding of 'us' !! .... she is selfish in the extreme, she has no concept of right or wrong ... she has no time, patience or understanding of the needs of others ... she has no idea as to what is reasonable and what is unreasonable!! nearly everything I try to do to help her is met with a resounding NO!! ... from getting out of bed .. cleaning her teeth,.. taking her medication .. getting washed and dressed .. toilet behaviour ... eating drinking ... then going to bed ..absolutely everything these days is a battle!! I can't make arrangements because she probably won't co-operate ... even her afternoon care plan is a challenge to get her there!! I get so demoralised and weary!! ...Yes I love her dearly .. but I too am sick of her!! or is it i am sick of dementia???

Either way .. I know it doesn't get better or easier ... ultimately its unsustainable!! .. and things will have to change ... the future frightens me!

 

[caqqufa]

There is so much we can say about this illness but so little we can do. How frustrating isn't it! We can identify with each other at the different levels of the progression of this illness, we share the same sadness, the same anger, the same sense of denial of what is. We don't want this to happen to us and our better halves, so it is even more difficult to come to terms with what is. I was so scared of the future but someone on TP told me that not all the scary things happen. S/he was right. In fact I have worried about a lot of things which now will not happen! Once I came to terms with the lack of knowledge of the illness even by the so-called 'professionals', etc. I lowered my levels of expectation and thought: this is up to me! I am here, so I will deal with it. So, stopped arguing, stopped criticising, stopped suggesting, and instead went along with what his mind wanted to do, what he could handle and manage because: he cannot help himself, but I can. I took a step back and stopped wishing things were different, or to be doing something else or be somewhere else and concentrated on what is and what can be done. If he wants to sleep: let him sleep; if he wants to go for a walk - let's go for a walk. As days passed and the illness progressed he obviously got weaker and though he needed more help and became more demanding with the activities of daily living, he grew calmer.

@ Reme: please have a re-think; stop flogging the dead horse, it's useless and very counter productive. I felt like you for a while and it was wearing me out. Thank God your husband still watches TV and play Sudoku. There might come a time when he will not be able to do that anymore. Let him do just that if that is what he can handle and it keeps him happy, But my big question is: what does your 'Specialist' specialise in? I'm sure most of TP users can identify the signs better. He should be preparing you for what you might need, not bury his head in the sand! Can you not get a second opinion?

 

[caqqufa]

Ours is a world of total conflict .... I too love my wife dearly but I despise dementia and what it is doing to her!! My once warm affectionate understanding fun loving wife is no more!! She has no understanding of 'us' !! .... she is selfish in the extreme, she has no concept of right or wrong ... she has no time, patience or understanding of the needs of others ... she has no idea as to what is reasonable and what is unreasonable!! nearly everything I try to do to help her is met with a resounding NO!! ... from getting out of bed .. cleaning her teeth,.. taking her medication .. getting washed and dressed .. toilet behaviour ... eating drinking ... then going to bed ..absolutely everything these days is a battle!! I can't make arrangements because she probably won't co-operate ... even her afternoon care plan is a challenge to get her there!! I get so demoralised and weary!! ...Yes I love her dearly .. but I too am sick of her!! or is it i am sick of dementia???

Either way .. I know it doesn't get better or easier ... ultimately its unsustainable!! .. and things will have to change ... the future frightens me!

I wish I could say something positive, honestly, because I felt exactly like that way back in August last year. But please keep in mind: she is not being selfish, she is not being unreasonable, she is not being uncooperative: it is the illness. Maybe you can try changing the way you ask her to cooperate? I also used to get the resounding NO, so I changed my attitude and the way I encouraged the activity. I still got the initial NO but I stopped trying to convince him it's the thing to do, so did not react, ignored and kept silent. Within minutes, e.g. with teeth brushing, I hear: where's my tooth brush, and play along.

At present hubby is in hospital and the nurses have reported the same thing. When they try to get him to have his dinner, his initial response is No, within minutes he is sitting down having his dinner!

Try and work at it and let us know. xx

 

[Grahamstown]

It is a year on from the last entry on this thread, but while searching for MCI here I found it. I could have written any of the entries here which describe all the events and emotions that I have experienced over the past year, from early inkling of problems to definite symptoms of illness. So I find fellow carers in the same boat. In a strange way I feel some comfort that I am not imagining it all.

 

[rhubarbtree]

It is a year on from the last entry on this thread, but while searching for MCI here I found it. I could have written any of the entries here which describe all the events and emotions that I have experienced over the past year, from early inkling of problems to definite symptoms of illness. So I find fellow carers in the same boat. In a strange way I feel some comfort that I am not imagining it all.

I found this thread interesting as well Grahamstown especially the soft introduction of MCI with the assurance that it does not always lead on to Alzheimer's. Are there really people out there who have had MCI for ten years or so? But in a way I can see why the professionals do this. It certainly gave me time to take on the practical issues. Would not like to be dealing with them now I am coping with full Alzheimer's.

 

[Grahamstown]

I found this thread interesting as well Grahamstown especially the soft introduction of MCI with the assurance that it does not always lead on to Alzheimer's. Are there really people out there who have had MCI for ten years or so? But in a way I can see why the professionals do this. It certainly gave me time to take on the practical issues. Would not like to be dealing with them now I am coping with full Alzheimer's.

I think that there must be people who have had MCI a long time because I know a man who has been like that for several years, driving and going to social occasions where he doesn’t initiate conversation but you can communicate with him if you ask. It must be about 8 years and this week he fell asleep at the wheel, hit two cars and wrote his car off. This shows the danger of MCI and driving. In my husbands social life there are several people with memory impairment but not MCI and they seem to go on like that for ages. In my husbands case, he is starting to forget how to operate his laptop, for example, which is a bit more than just forgetfulness, and there are other worrying examples. It is a fine line but I know that it is more than just ageing memory.

 

[Duggies-girl]

I think that there must be people who have had MCI a long time because I know a man who has been like that for several years, driving and going to social occasions where he doesn’t initiate conversation but you can communicate with him if you ask. It must be about 8 years and this week he fell asleep at the wheel, hit two cars and wrote his car off. This shows the danger of MCI and driving. In my husbands social life there are several people with memory impairment but not MCI and they seem to go on like that for ages. In my husbands case, he is starting to forget how to operate his laptop, for example, which is a bit more than just forgetfulness, and there are other worrying examples. It is a fine line but I know that it is more than just ageing memory.

Sounds like my dad. My mum told me before she died that dad had memory problems and that was more than 6 years ago. After mum died I started to notice it too. Just a bit of repetitiveness and lack of concentration at first. Fast forward to last year and his car gained about 6 dents in a few months also a tyre written off then he lost the car when he was shopping and had to be rescued so no more driving. Can't switch on his mobile or operate his TV remote and the laptop is now idle. He was diagnosed in November with alzheimers but I knew he had it long before then.

Hasn't affected him much as he is still a very nice and pleasant man and he does not have dementia at all (he has forgotten) in fact he gets along very well for his age 87. It has affected me though my life is very different to before.