Trying to do everything

[cakeisnice]

Hello. I find myself here as I am having a bad day! My husband was diagnosed with early onset dementia last year. His memory and personality has been changing over the past five-six years, so I am glad at least to finally have a diagnosis. My problem at the moment is trying to do everything. I have teenage children, a job, a uni degree course to finish, as well as a sick father and my husbands dementia. I usually do quite a good job of impersonating superwoman, but on bad days I feel so low, overwhelmed and lonely.
I have such a mixed bag of feelings, from disbelief, feeling depressed, anger and resentment.
The worst thing is that I do not love my husband anymore and haven't done for many years. I now feel totally trapped by his illness, as I will never be able to leave him, as he needs me too much now. I understand if you all feel that I am the biggest cow going, but I didn't leave him before, as he used to threaten to hunt me down and hurt me, if I took the children with me.
He has always been an overbearing, angry, controlling husband and I have lived in a joyless, loveless marriage for 15 years. I waited years for the children to be older, so they can choose who to be with and he can't blame me/ hurt me for taking them, it will be their choice. I also needed to finish my degree, to get a better paid job before I left him, so that I could afford to get a new place to live. Now I am truly stuck and suffering from MAJOR guilt for having all of these feelings.
Sorry for all the rambling. I don't really expect any answers or replies as it is such a terrible thing.

 

[canary]

Hello cake isnice and welcome to the forum

No, I dont think that you are the biggest cow - I think you are being honest. Many of us struggle with the feelings of depression, anger, resentment, frustration, feeling trapped..... Yup, been there. There is no need for guilt - you are still there, doing everything, despite a loveless marriage. Apart from the fact that my children are older and have both left home I feel I can relate to a lot of what you have written.

But you cant be superwoman - its just not possible. Think about what would help you most. Maybe a befriending service for OH so that you can have a break? Someone to come in and help with housework? Does your husband need help with showering/getting dressed?

Then get onto Social Services and ask for a needs assessment for him and a carers assessment for you (2 different things) and find out if you can be offered some help. Also find out if you are receiving the correct benefits. Your husband should be eligible for Attendance Allowance/ PiP and ESA. You may be eligible for Carers Allowance. These benefits will help buy in things like getting a cleaner, or paying for someone to take him out sometimes.

Finally, I will lend you the Talking Point Guilt Monster Stick so that you can bash the living daylight out that guilt monster sitting on your shoulder and stop it whispering in your ear!
xx

 

[esmeralda]

Welcome from me too cakeisnice, so sorry you are having such a horrendous time, but glad you've found your way here.

I really don't think you will find anyone here who would stand in judgement on you for a moment. There may be some saints around who have never felt resentment, frustration and anger amongst other things - but they must be very few and far between. And that's if they are caring for someone who has previously been caring and loving.

I never know how people who have been in unhappy relationships cope with a caring role, and it does sound as though yours has been particularly difficult. Please do make good use of canary's Guilt Monster Stick, and also her good advice re benefits and getting as much help as you can. Don't know how you manage it but I hope you can finish your course as it is such a good investment in your future. You can't know what is going to happen but if your husband becomes violent then it may not be safe for you to continue to live together. This must all be very difficult for your children too. Are their schools aware of the situation? They may be able to provide counselling to help them to deal with their feelings.

Do hope you can find some help, and continue to post on here as people are so kind and can offer such good advice. Big hug.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Clunchman]

Hi cakeisnice, I do not have any good advice to add to that already given. But may I suggest loosing the guilt trip? You have done well in a very bad situation. Please get all the help you can. To be threatened to remain in a relationship is not something anyone can or should accept. You are not responsible for someone else's illness, so don't be shy of accepting help.
My best wishes to you in sorting this out.

 

[Gnasher]

I cannot offer you any advice than what has already been given. However I can tell you that you are not alone. Whilst I love my husband still I really do not like him anymore but I know he cannot help his behaviour. Sending you a hug.


Sent from my iPad using Talking Point

 

[Trisha4]

Hi cakeisnice. My only advice is to follow the original advice re benefits and help and support. It takes more of your energy but pursue what you and he are entitled to. One other thing is power of Attorney which you should have. That's the practical bit.
BUT my heart goes out to you on an emotional level. I love my husband dearly but I find caring for dementia horrible and I get angry, resentful and fed up at times. I think the trapped feeling is a very common one. I don't feel trapped with Mick but I feel trapped in the house as I can't leave him alone at all. I had a father like the husband you describe so I understand a little of what you are dealing with. I hope you've managed to beat the guilt bit a little as that is a wasted emotion. You have NOTHING to feel guilty about.
Keep posting on here. You'll find support, advice and understanding. You'll also find care, people on here care about one another although we don't know one another.
Positive thoughts and hugs from me. By the way, what are you studying?


Sent from my iPad using Talking Point

 

[cakeisnice]

Thank you so much for all of the advice, kind words and especially for lending me the guilt monster stick! That made me smile xx

 

[Guzelle]

Thank you so much for all of the advice, kind words and especially for lending me the guilt monster stick! That made me smile xx

Don't feel guilty you are selfless looking after a husband who has treated you badly . You do not have to look after him and he is very lucky to have you!

 

[Morty]

Dump the guilt asap,look for what help is available and mabey think about putting hubby into care and get on with your new life imo

 

[Rageddy Anne]

You are not a cow, and your feelings are to be expected...He doesn't deserve you, but getting cast in the role of Carer just comes with the diagnosis. i've never liked the description " Loved ones" when for many that isn't the case at all.

You have made the best of the hand you were dealt, not much choice was there? All I can say is that the person you had reason to hate, once Dementia comes along, gradually becomes another person, who is becoming more helpless and depends on you. Your feelings might change as time goes by. It's a complicated journey..

But do try not to let anyone in the system take it for granted that you will fill in the gaps when the system fails...

I hope you can get the qualifications you need and deserve. My heart goes out to you. Sending a great big hug.

 

[Jinx]

Welcome from me too. The only thing I would add to what has been said by others is that you can't be forced to be a carer. Guilt aside (and I know that's really hard even with the guilt monster stick!) and if you haven't already done so, you need to contact Social Services, and don't hold back on telling them what your life is like at the moment. Get all the help you can. Also if you think there is a chance your husband could become violent, make sure you have a room with a lock on the door you can go to and that you have your phone with you so you can call for help if you need it.


Sent from my iPad using Talking Point

 

[HillyBilly]

Hi Cakeisnice. I'm not surprised you were having a bad day! You must be exhausted, mentally and physically. I have to say, if I were in your shoes, I'd be making the children and the degree my priorities. And I'd be seriously considering getting a care home sorted for husband. No guilt whatsoever x

 

[Tara62]

he used to threaten to hunt me down and hurt me, if I took the children with me.
He has always been an overbearing, angry, controlling husband and I have lived in a joyless, loveless marriage for 15 years

If it were me, I'd divorce him. I wouldn't even contemplate becoming a carer for someone who had behaved badly towards me, and whom I no longer loved. Just get the hell out of there.

 

[Wiggy41]

Hi cakeisnice I can really sympathise with you and know what an awful time your going through as I'm in a similar situation. I had left my husband 7 months before his diagnosis of vasculer dementia, we have been married 54 yrs and the last 20 yrs he's been mentaly abusive, and very nasty many times, my life was lived around him with what I could do and couldn't do. But when he got his diagnosis I felt I had to come back to him as I didn't think he should be on his own. I don't love him anymore, there are days when I don't even like him, he's nasty, and treats me like something on his shoe. I'm always thinking I wish I hadn't comeback and that I could leave again , then I feel guilty thinking that and have to admit to myself that this is how it's going to be now. He is fully self caring he can look after himself, gets confused with tv remote and his concentration skills have slowed down a lot so he can't seem to concentrate on a serious conversation. He goes out on his own SO he's not that bad, BUT the verbal aggressive and accusing behaviour he has had for 20 yrs has got worse, I've read that what there character was originally especially aggression is made worse by the dementia, not sure if that's true. My problem is I don't know if it's the dementia or the true him being so nasty. I could accept more if he had never been like this in the past and it was the dementia doing it, I could make allowence, but I do try to do that and say to myself "it's the dementia" Sorry to ramble on cakeisnice but I wanted you to know you should not feel guilty, anyone in your position would feel the same it's so very very hard to keep it all together. Please take care, look after yourself and spoil yourself when you can. Love n Hugs Sorry for the long post

 

[Lawson58]

My situation is completely different from yours but I absolutely understand the anger and the resentment and the claustrophobic feelings you have about being stuck in a loveless marriage with no end in sight.

You can't keep going on as you are without being overwhelmed by it all. Others have offered you lots of great practical advice but I would like to suggest that you have a good chat with your GP and be totally honest about how you are feeling. There is nothing wrong with accepting some medical intervention at this time and they may also recommend some psychological counseling. I became very depressed and needed this help and fortunately I am coping much better.

You may also find that as your husband's condition progresses that your situation will also change. I know that OH has become easier to manage in the last few months as his memory worsens and maybe I am better able to deal with him now I have had some help. My heart goes out to you because you have no idea of how long the road ahead is and I know at times it really does seem to be endless.

Good luck and let us know how you get on.

 

[Rageddy Anne]

If it were me, I'd divorce him. I wouldn't even contemplate becoming a carer for someone who had behaved badly towards me, and whom I no longer loved. Just get the hell out of there.

Might be difficult if he's lost capacity to defend himself...

 

[Roseleigh]

If it were me, I'd divorce him. I wouldn't even contemplate becoming a carer for someone who had behaved badly towards me, and whom I no longer loved. Just get the hell out of there.

That's not so easy when you have children who still love their father, and do not fully appreciate how difficult the marriage may have been. It's also very difficult to distinguish the abusiveness from the disease, as nobody knows how long ago the brain changes started which preceded the noticeable indicators of dementia.
It could be twenty years earlier!

 

[Wiggy41]

I totally agree with the last comment, it's so frustrating to know what is the dementia and what is the aggresive person and IF when he was mentaly abusive up to 10 years ago could it have been the start of the's awful changes in his brain. If only I knew.