How long will this go on?

[Wheelerman]

It is now some 7 years since my wife was diagnosed with AD when she was aged 62, having been told she had MCI (Minor Cognitive Impairment) two years earlier. Her decline has as far as I can tell been remarkably benign but her mini memory results are now beginning to deteriorate. Aricept has been replaced by Memantine and she can deceive still the casual contact that she doesn't have any problems, but the constant repetition soon gives the game away.
I am the sole carer, my family live 200 miles away and in Canada. It is all becoming very stressful, not only for me but also my wife. I feel as though I'm in a tunnel and the light at the end is getting further away not closer. I know I shouldn't feel like this, is it a normal reaction or am I just being selfish? I could write pages on what has gone on but all of you who are carers have been through it all and seen it many times no doubt, so I ask myself what is the point of doing that? If only I knew how much longer this is going to continue. I know my wife, poor woman will never get her real life back but I'd sure as hell like mine back. I can hear cries of disapproval from many, maybe all of you but this is the brutal reality for me.
My wife is at times stunningly lucid but has a memory span of about 10 seconds. She now has more frequent spells of anger, agitation and confusion. I have learnt not to correct or disagree with her and have again had to seek help from the police to find her this week. Her overall lucidity and awareness indicate that a care home solution is still some way off but after 7 years it is all beginning to get me down. Please try to understand if I come across as somewhat cold hearted but I feel my life is draining away.

 

[Mufti]

hi

Dear wheeler man I am in very similar situation - 7 years along the road - diagnosis 5 years ago. I in no way think of you as hard heated! It is so difficult and I too want a life again. My l life is now my partner and his needs. He to is too "lucid" for care home - I have tried day care and a failed respite (only one night). He just refused to stay and refused to go back to day care. Like you, I have no family nearby and long to go on holiday or to visit friends or just have a day out on my own!! Don't feel guilty - it does sometimes feel like life is on hold and no one can even guess at how long for! I am at a dead end now for ideas and how to fill some long lovely days. I hope my partners journey is not allow and painful! Don't now if this helps but you are not alone in your feelings.x ruth

 

[fullmoon]

I think you have been very honest. Unlike most terminal illness there is no predicted timescale. Combine that with watching somebody you love dissolve in front of you is very difficult to bear.

If I could choose I would rather my mum be physically frail, that way I would still 'have' her. As it is I have glimmers of a mum who always had a deep rooted fear of dementia and that is another reason it hurts so much :/.

You have been a dedicated carer for 7 years do not feel guilt for wanting some freedom and enjoyment. Best wishes.

 

[lilysmybabypup]

Welcome Wheelerman,

The emotions you describe are all entirely understandable and to be expected. I believe Dementia results in close family going through similar stages of grief as a bereavement. We are grieving the loss of relationships, hopes and dreams, even real time. Please don't waste another moment feeling you are a bad or selfish person, you simply aren't.

Duration of this condition is hugely variable. There may be people who go on for 2 or 3 years after diagnosis, and others for 10 or more years. It depends on so many things, some people miss the early signs, or are feeling denial and don't do anything until there is more progression. I also think trying to imagine if there is 1 year or 10 years left is fruitless, this is definitely a "one day at a time" condition.

You have reached out here for help, and that is a good thing. There is great comfort in knowing you aren't a terrible person in a world of perfect carers who just manage everything wonderfully and always smile. It simply isn't true, we all have bad days, angry days, selfish days, desperate days, and even blessed precious days, the ones that give us strength to face the next day.

I think you need to find out all the resources and assistance available to you in your area. I have learned that you need to be active and persistent, the proverbial squeaky hinge. A carers' support group could be a good next step, the forum is great but sometimes you may need a real shoulder and people who have local knowledge and experience. I am not in the UK so others here will be far more informed and helpful in a practical way.

I'm not sure whether there are any of these places where you live, but I know of a man in the Dementia Cafe I attend with my dad. He found a Lifestyle Village where there were various levels of care, and specialised in dementia care. He and his wife live in a self-contained section but they have cleaning, and meals all provided, it's secure and there is ready access to help and advice as well as medical assistance. Naturally it was a huge upheaval and it's a gamble. They had to sell up their home and move in, but he has the help enabling him to remain with his wife in what is essentially the same as he would have in his own home but with all the benefits of a care facility. Once she progresses further she will be able to move in to the next level of care. As I said, these places may not be around your area, I'm not sure, but it may be worth investigating.

Regardless of all that, at the very least, make contact with the Alzheimer's Society and speak to your GP about the best next step. Keep posting here so you can see that looking for help isn't your failure, it is the most sensible way to care for your wife and yourself.

Take care,
Stephanie, xxx

 

[zeeeb]

I feel for you. It (Alzheimers) is often a very long marathon, one that we have not trained for and are often in no fit state to complete. But we do go on, because what else can we do? give up?

Don't feel guilty about wanting your life back. It's only natural. I don't think any sane person would blame you for thinking like that.

I hate to be the barer of bad news, but you never can tell how long it will go on. My grandmother in law is 96, and she's been diagnosed since some time in the late 1980's, so hers, has been a very long journey indeed. She is now of course in a nursing home, and has been for about 7 years.

I'm just beginning to panic, because it seems that she may outlive her partner, who is about to turn 90 this year. This is bad news, because she has no power of attorney, and no valid will, and can't make one. So we were kind of banking on her dying first, so that we didn't have to deal with that can of worms.

My mum has just been diagnosed at 57, and I hope and pray that she will not have to suffer for as many years as my grandmother in law. It certainly is often a long sentence to endure.

 

[60's child]

Hi Wheelerman
You dont sound in any way cold hearted or selfish. It is so incredibly hard loving someone and watching an awful disease take them away, especially if you are the sole carer. I often feel the same and say "I want my life back". Feel really low for a few days and then pick myself up and get on with it. My Mum has alzheimers. It must be so incredibly hard if it is a partner. I do not know how I would cope if it was my husband so you have my deepest sympathies.
You say you are the sole carer. Is there any way you could consider some outside help? It might be worth calling the alzheimers society to see if there are any clubs, meetings that your wife might enjoy. You sound like you could do with a bit of "me" time now and again. It is important ( and not selfish) that you look after yourself as well. It is incredibly draining being a carer.
Take care

 

[Izzy]

Good morning. I agree with 60s child. It might help if you were able to get your wife to go to some 'clubs'. This would give you a bit if time to yourself. My husband was diagnosed 12 years ago. Although his MMSE score is very low (about 6) and he really does nothing without supervision he is very content and I suppose that makes a big difference for me. I don't know how I would manage if he had behavioural issues. I am very lucky in that I have a care package for him and he has carers who keep him company every day. This means I can do my own thing when the carer is there.

Have you had a community assessment? A carer's assessment is part of this. I know that people have had different experiences of this and some have not found it useful. I found that it was through this that I got a place for my husband at the Alzheimer Scotland day centre. He goes there for a full day once a week. I call it his club and he accepts this.

We still do lots of things together and at present are away on holiday. It isn't easy and at times I could scream. Having said that I still want us to be able to do this kind of thing together as long as possible. It doesn't matter that he has no idea which country he's in or that he'll forget what we've done 10 seconds after we've done it. He enjoys things for the moment and that's ok with me.

As I say things would be different if he was aggressive or presented other behavioural problems. This is only my experience of how things are with us just now.

Take care.

 

[Jess26]

Your not selfish at all. Just honest. Sorry if anyone disagrees but I'd say every carer feels as you do at some point. I know I did.

 

[Witzend]

Your not selfish at all. Just honest. Sorry if anyone disagrees but I'd say every carer feels as you do at some point. I know I did.

Ditto. I should imagine these feelings are more normal than not. Only I guess many never express them for fear of being thought selfish and uncaring (often by people who have no idea what they're going through, but like to think they do.)

 

[Scarlett123]

Ditto. I should imagine these feelings are more normal than not. Only I guess many never express them for fear of being thought selfish and uncaring (often by people who have no idea what they're going through, but like to think they do.)

So so true. I was recently asked if John was better - as if he had a cold! I'm so fed up with it, and find it gets worse. Every time John says he's tired, and going for a sleep, I'm thrilled. Does that make me uncaring and heartless? If it does, it does.

I'm also thrilled when John goes to his club, and treasure the precious hours to myself, but I'd be lying if I didn't admit to feeling resentful at the life I now have. I too have health problems, but these are all shunted onto the back burner, because John's needs come first, last and always.

Like you, Wheelerman, I'd love my life back, and after 9 years, it's taken its toll. But we carry on, because we have no alternative. If I'm ever reincarnated, I'm adamant that I want to come back as the one being cared for, and not the carer!!

 

[Lainey 127]

Not much to add really except to reiterate what others have said. You're not selfish, I'm sure most carers feel this way at times. It's a tough and frustrating time for sufferer and carer alike.

 

[tonyli]

I agree with all the above. I sometimes find myself thinking of stuff I will be able to do when Ginna goes and a split second later I am consumed with guilt. Over the last few months I have been blessed with a couple of ladies from Social Services who come each week for a couple of hours and take Ginna out for a drive and a walk along a local beach. BLISS, I can go out into the garage and tinker with my motorbike that I haven't ridden for ages without having to go back into the house after a few minutes upon hearing Ginna calling out 'Granddad, Granddad'. So, like others have said, see if you can get a little bit of respite help, it works wonders.