Just back from short stay in Paris

[Jennyc]

I'm trying to decide if it was more good or more bad. I've never been to Paris, so really wanted to see it for myself before I am too old, not just on tv or in a film. Booked a very short, organised coach trip for me and husband, diagnosed with Alzheimers 4 or so years' ago.

It was pretty exhausting, an endless stream of where are we, why are we, what is this place etc at roughly two minute intervals for 2 1/2 days. Plus he's become nervous of steps, walking, strange places, loud noises - and oh, so slow. Being patient is so wearing. Especially when he has not been your favourite person for a great many years, but now you know you are responsible - the carer - you are stuck with it, too late to make a run for it. You didn't escape when you could.

I'm glad I've seen Paris, well a little of it anyway. But mostly he was too hot, too cold, had a tummy ache, was tired, why are we here anyway, when are we going home?

What do you do? I can't leave him alone for more than an hour or so. He is not bad enough for respite care and anyway, the once a week crossroads chap who does something with him for two or three hours makes him so angry that I worry about it for a day or so before he comes, again is it worth it for the anger it causes?

We are back. He's forgotten where he's been. We are now back on the endless what are we doing tomorrow when are we going to the cinema / theatre / put your own word in the space constant refrain. We go to the cinema most weeks, we do something every few days because I don't know how not to feel guilty if we don't.

So do i keep on trying to do what I had planned to do in my retirement which coincided with his diagnosis, which is to see some places we never managed to get to because he wouldn't go, or do I just give up? Is it worth the effort?

Hard to decide. But what is the point of life otherwise, if you never do anything you actually want to do? Hmm ...

I'm going to bed.

I'm exhausted.

 

[esmeralda]

You are in a very difficult place Jenny, especially if the relationship hasn't always been what you might have hoped. Having your life taken over without being given any choice is horrendously difficult at the best of times and I'm sure there are very few who would choose a caring role. Perhaps I'm wrong, but I know I have struggled even though my husband is very sweet tempered and not difficult. Even so being completely responsible for every aspect of someone else's life is exhausting.
You say your husband isn't bad enough for respite care, but he does sound quite challenging to be with. Have you had an assessment by Adult Social Care, or are you in touch with any other support services?
You're absolutely right to seek to have some sort of life of your own otherwise you will not be able to continue to provide the care which you are doing.
Forgive me if I am overstating it but you sound on the edge of despair, I hope you can get some help, maybe it would be good to talk to your GP. It's good that you've posted on TP, I hope you will find it helpful enough to keep posting. People are so kind and understanding on here. Best wishes and a big hug to you. Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Canadian Joanne]

It's very sad that you both can't do the things in retirement that you were looking forward to, but I think you should do them without your husband.

He sounds like he would qualify for respite care. I know it can be very stressful leaving your loved one in respite but for your own health I think you need to have regular breaks. Please look into it - you may be pleasantly surprised.

 

[Lawson58]

Hi JennyC,

I know exactly where you are coming from and I believe in so many ways that when you are a carer because circumstances and events have made the choice for you, that it is much harder than when you have been in a loving relationship.

I think the really big thing I have learned from my own experience of caring for my OH who has Alzheimer's is that I personally cannot allow my role as a carer to define who I am, even though I have to often put the things I want to do on the back burner with the promise to myself that they are not going to stay there.

I also believe that my life and welfare have just as much value and worth as that of my OH so whilst I am a responsible and diligent carer, I refuse to be a sacrificial lamb to this disease or to his needs.

My OH still has a reasonable degree of independence but I am preparing for the time ahead when that will go and he is going to be relying on me more than ever. Fortunately, I don't and won't suffer from the guilt trips that others on TP experience because I have nothing to feel guilty about. I have never promised him that I would never put him into a CH because that would have been a lie and I would not do so unless it was necessary for his health. OH is 75 years old and apart from AD, has major cardiac issues and some other minor ones that cause him considerable discomfort.

About 18 months ago, he had a cardiac arrest at home and I saved his life by giving him CPR until the paramedics arrived. I gave him the gift of life and he is still here and enjoying a reasonable quality of life considering all of his health issues. This might sound mean to some on TP but I don't feel as if I owe him anything more than I already provide.

I am making plans for when it will be appropriate for him to have some time in respite or will need to move into care. They are somewhat indefinite plans but most importantly, they are plans and dreams for me and about me.

We all need a little hope for the future but sometimes we need to create that for ourselves. Could I suggest JennyC that you try and channel that anger and resentment into something positive for yourself?

Best wishes and don't give up! Never give up!

 

[Jennyc]

Thank you very much for your helpful and thoughtful replies.

My trouble is I seem to be two people, one is endlessly patient, understanding, caring, because I think Alzheimers is a terrible disease, and I know it is not my husband's fault he has it and it must be such an awful thing to live with, so I do all I can to make life as good as it can be.

The other me is an internal seething mass of anger, resentment and frustration towards this person who made my and my daughter's lives so miserable for so many years, who was aggressive and bullying and used to "suck the joy from life" but who I couldn't leave as he was financially dependent on me, and would threaten suicide if I said I wanted to leave. Strangely, alzheimers has some of the time made him a nicer person.

But the conflict and guilt within me is tiring.

 

[Jennyc]

I'm not sure I'd have done the CPR, you are amazing.

 

[Delphie]

I agree with the others that he sounds ready for respite. You certainly sound ready for having a break from him!

My advice to you would be to organize this asap. Make it a couple of weeks if possible and see how it goes. You might find that he does very well in a structured environment with routines and plenty of people to give him attention. You might also, with a little bit of time away from it, get a more realistic perspective on your situation. Looking in from the outside I see a knackered, frustrated, resentful woman who has done her very best, and more than she needed to given the history, who has every right to say enough and start getting on with her own life.

To be perfectly honest, in your shoes I'd be bypassing the respite bit and going straight into looking for a nice care home for him. It really isn't too late to 'make a run for it'.

 

[marionq]

What an insightful thread! These powerful emotions are felt by many of us but difficult to express because of all the family feelings involved. I did love my husband and still care very much what happens to him but I too seethe at not being able to continue with life as I would choose to live it. I know he would have if the boot was on the other foot!

Your husband is ready for care Jennye by outside carers. Be practical and seize what is left for you.

 

[CollegeGirl]

Jenny, always remember that the respite is for you. Not your husband. It doesn't matter what stage he is at - if as a carer you are exhausted then you need respite.

If your husband would be self funding, then you can arrange this yourself. If not, then you would need to contact social services and arrange to have a carer's assessment. Tell it how it is. Tell them just how exhausted you are.

I really feel for you. Looking after someone with dementia is very hard even when you have adored them. I can't imagine what it must be like when you haven't.

xx

 

[LYN T]

I really feel for you. Looking after someone with dementia is very hard even when you have adored them. I can't imagine what it must be like when you haven't.

xx

So true CG. I find this thread very sad but also uplifting that Jenny has cared for a man who has not been very kind to her. Jenny-I loved/love my late Husband very, very much but even with those deep feelings it was very difficult to be a full time carer. For many years I could look back on happier times-of which there were plenty I don't know that I could have been so willing if my married life had been a trial and I didn't feel love and compassion for my Husband.

Try to at least think of the suggestions that have been made to make your life easier. You need a break at the very least.

Take care

Lyn T

 

[Chuggalug]

Jenny, I wouldn't even have the guts to have a holiday! Personally, I don't need them. Yes, it must be lovely to go away and see a bit of 'otherness' for a time, but there's always then the reality of home afterwards and your own settled life, which you've made for yourself over the years. Although, when dementia comes along, life isn't so settled any more.

That's the hard bit.

I married a man who, I found out afterwards, was always right, and no one else had a say! 24 very hard years. And then he became ill. Those years have been the hardest of all, with me finally having to take the reins of living into my own hands. That is not liberating, one little bit!

The times I've wanted to just run out the door are too numerous to count, now. I'm at the stage where my hubby has been in hospital for a few weeks after yet another crisis. I've visited, had a rest, and am slowly getting our home into something a bit more livable again. What it all came down to, for me was that I believed in the promises I made when we married. That's the only reason I stayed: sheer bloody-mindedness! I've hurt, I've been angry and frustrated over and over, but I refused to let this disease beat me. I'm devastated that it's beaten him. I only hope that what happened to me will not happen to you. I was never believed when I cried out for help. Finally, after 6.5 years, we are actually getting the help we could have done with at least four years ago.

Dementia has this nasty habit of trying to suck the life out of you. Don't let it. Pull out all the stops you can and get help/advice/support. And do it now, for both your sakes. Glad to meet you, Jenny, and I wish you every success in getting the help you need.

 

[pony-mad]

I agree completely with Marian. It is not too late. You have given enough and need to live what is left of your life! Start taking care of your mental health before it takes its toll.
I understand how you feel.
Best wishes.


Sent from my iPhone using Talking Point

 

[Lawson58]

Hi JennyC,

I don't live in UK so I cannot give you any practical advice about assessments, funding, etc but there have been a lot of great suggestions for you to ponder.

You have had years of abuse and now you have to care for your abuser. How difficult that must be!

I am a very feisty and pigheaded person so I don't do the 'patience and understanding' bit at all well. However I do find that I can reduce OH's paranoia and gain far more cooperation from him if I keep all our communication at a conversational level. I can be quite firm in doing it and find that if I tell him that it is time to put clean pants on, he might grumble a bit but he does it. And I suppose that really I am offering you another approach, something else to try. You know the old saying that if something isn't working for you, then you need to try something different. Perhaps for you, you need to look at your current situation and find one little thing that you can change then comes the important bit of taking the first step. It doesn't need to be a huge step but it will make you feel a whole lot better once you've done it.

When my daughter's marriage was breaking up, she found a pile of dreadful pornography that her husband had thought he had successfully hidden. It distressed her markedly so my suggestion to her was to make that her first step - take it outside and set the pile alight. She had been so controlled by her husband that it took her 3 days to do it but she said she gained a huge sense of satisfaction from doing it. More small steps followed.

And perhaps by finding one little thing that can give you a little more control over your situation, it might help you find other ways.

Strangely enough, my OH has been calmer since his diagnosis, perhaps his medication has helped but I suspect that he has conceded that I was right and he has adjusted his thinking a lot. He is also a lazy sod and uses his various ailments as an excuse to wipe his hands of any responsibility so from his warped point of view, he's onto a good thing!

Your mental state concerns me very much. Apart from the anger, resentment and frustration, I feel that there are underlying darknesses of depression playing with your mental state which is the toughest part to overcome. Perhaps, help for you might be to seek assistance to improve your mental health.

I do wish you well and that soon we will be hearing from a JennyC who is feeling a little bright.

 

[Suelynd]

I'm trying to decide if it was more good or more bad. I've never been to Paris, so really wanted to see it for myself before I am too old, not just on tv or in a film. Booked a very short, organised coach trip for me and husband, diagnosed with Alzheimers 4 or so years' ago.

It was pretty exhausting, an endless stream of where are we, why are we, what is this place etc at roughly two minute intervals for 2 1/2 days. Plus he's become nervous of steps, walking, strange places, loud noises - and oh, so slow. Being patient is so wearing. Especially when he has not been your favourite person for a great many years, but now you know you are responsible - the carer - you are stuck with it, too late to make a run for it. You didn't escape when you could.

I'm glad I've seen Paris, well a little of it anyway. But mostly he was too hot, too cold, had a tummy ache, was tired, why are we here anyway, when are we going home?

What do you do? I can't leave him alone for more than an hour or so. He is not bad enough for respite care and anyway, the once a week crossroads chap who does something with him for two or three hours makes him so angry that I worry about it for a day or so before he comes, again is it worth it for the anger it causes?

We are back. He's forgotten where he's been. We are now back on the endless what are we doing tomorrow when are we going to the cinema / theatre / put your own word in the space constant refrain. We go to the cinema most weeks, we do something every few days because I don't know how not to feel guilty if we don't.

So do i keep on trying to do what I had planned to do in my retirement which coincided with his diagnosis, which is to see some places we never managed to get to because he wouldn't go, or do I just give up? Is it worth the effort?

Hard to decide. But what is the point of life otherwise, if you never do anything you actually want to do? Hmm ...

I'm going to bed.

I'm exhausted.

Hello Jenny C I'm so glad I came upon this thread. I badly needed a holiday and last Sept booked a five day coach tour for me and my husband (4 yrs diagnosed with Alz then) to Scotland. He kept getting angry with me what are we doing/why/where etc? I kept trying to cheer him up and told him we were going on a holiday and it was a nice thing to do which would pacify him for a few minutes!
It would have been a lovely holiday but he made it very hard work and being out of his usual environement played havoc with him at times. He imagined other people in the room with us in the mornings and didn't even recognise me as his wife!
We had trips out every day which was a godsend as I've no idea what we'd have done all day at the hotel. Thankfully there were some very kind people on the trip who were very understanding but I'm not sure I would do it again. He didn't remember a thing about it the minute we got home.
Mine too has not been the easiest of marriages (we were married forty years last December) but my love for him has always been strong although my 'like' for him hasn't!
He went in a care home for two weeks respite last November because my family and the social worker could see that I needed a break and he settled in so well that he has remained there!
Seven months on I am wondering whether to try bringing him home and see how it goes because I've had a long break I might find it easier. I just don't know and don't want to upset the apple cart.
However, I hope you can have some much needed respite you certainly sound like you would be eligible for at least two weeks.
Please let me know how things are with you. I fully understand where you are coming from. Love Sue