When do you know it's time to give up?

[Bikemad]

I'm 56 and gave up work three years ago to look after my wife when she was diagnosed with Alzheimer's, after 5 years of managing what we were told was depression. Like so many other couples, we've been through the range of issues that this awful illness throws at us; we've had the violence, abuse, delusions, sleepless nights; personal care issues, but after three stays in the local hospital in the past twleve months, most if these are under control albeit still liable to flare up at any time. My issue at the moment is that my wife has ceased to accept help and support from anyone else; she won't go to day centres; she won't accept any personal care help and shedoesn't even like our daughters looking after her for more than 45 minutes or so. She has started to take against the house again, and so we spend most of the day outside either walking the local streets or trying to visit somewhere that is within 20 minutes as her limit is an hour at any one place. I feel trapped and daily asking myself if I can do this anymore. I feel ashamed of being weak but at the sametime need some time of my own. Overriding it all though is my belief that if I do give it up, my wife would go down hill at an even quicker rate than we are losing her now. Anyway, the point of this message is to ask anyone who has gone through the stage of agonising over this decision, how do you know when the time is right? Thanks for reading.

[2jays]

No I haven't gone through this stage, but have read a lot about it on here.

It sounds like you are a wonderful husband to your wife, but the fact you have entitled this when do you know it's time to give up, tells me you are coming towards carers breakdown. I don't see it as giving up - it isn't giving up, it's doing what is best for your wife. My suggestion is despite what your wife says, you need to get some more help in, white lies, or what ever you want to call it, help towards getting your wife to accept help. I understand it is not going to be an easy thing to do, but if you do eventually get carers breakdown, she will end up in an emergency care situation, rather than an eventual planned care situation, and you and she could have less choices. Contact your GP,CPN and social services - have you had a recent carers assessment and has your wife had a recent care needs assessment? These I think are needed.
Hopefully someone with personal experience of this will be on,when they can, to give you first hand experience soon

Keep posting
Thinking of you

[elaine n]

Hi Bikemad
I've been where you are now. My husband was my world, I cared for him almost single handedly and he found it hard to accept outside help (as did I) even though I knew we needed it, I couldn't work out how to impliment it without causing him even more upset.

Like 2Jays I think you may be heading for carers breakdown, it happened to me as it happens to many of us. In our case we actually got to crisis point before we were helped and on reflection I know I should have got the agencies involved sooner. It's hard to know how to do that when you know your loved one doesn't feel ready to accept that help or are too reliant on you as a carer to accept someone else but for your sake it's vital that you put something in place to give yourself some time just for you.
We carers are very good at putting ourselves at the bottom of the needs list but ultimately it does no good for the carer or the cared for. Once I'd asked for a sitter, who we called a 'befriender' at home I was amazed how well it worked.

You say you feel weak for needing some space - you're not weak in any shape or form, you're a caring, loving husband who's doing the very best he can under the most difficult circumstances imagined - my heart goes out to you.

Please look after youself, a worn out carer (as I know) can't care as well as they want to and as I discovered getting help in and sticking to your guns isn' talways as bad as you sometimes think it will be xxxxe

[mike antony]

agree with 2j
you reached stage where you need put her needs first even if that means going against her wishes you need get a as many different people to help you if you burn its even worse
aalzehimers have people round once a week carers from agency have hairdreser come in anythin you can i ws always so dependent on carers
try take her day centre needs variety and gives you a break

good luck

[allthings]

Hi bikemad i am in nearly exactly the same position as you, and i really feel your anguish, I got carers in very early through social services and now get breaks of 2.5 hours on a thursday and tuesday night and 2 hours on a sunday morning plus 3 to four hours once a month to just go out and do what i want. if your wife has no income this will be paid for by the local council. I do not think it would be possible to look after my wife without these breaks, i know it is not alot of time,but it does help to step back and clear your head of the stress of caring. My wife got used to sitters coming into the house and now accepts them , I think you just have to be good to yourself and take every opportunity to pamper yourself and not feel guilty about it, because we are all doing a very stressful job mentally and physically as carers.

[sussexsue]

For me it got to the stage where the words "I cant do this anymore" just kept going round and round in my head day and night and until the moment I screamed them out loud. I was in a very dark place.

Fortunately my family listened and mum went into 2 weeks respite. 5 months later she is still there. TBH it has been the best thing for everyone, including her. She accepts the care there much better than from me. She has gone downhill, but she was going rapidly downhill at home as well.

I do think it is so much harder for people when it is a partner involved.

Sue

[Grannie G]

For me it was after calling out paramedics most nights to help my husband back to bed after falling. He forgot he needed help , slid down to the floor and couldn`t get up.

While this was happening at night time, he was still sundowning and going walkabout late afternoons, looking for his real wife and family. It was January and he went out in slippers and without a coat, so desperate to go home.

We were both considered at risk.

There will be a time when carers realise the way they live is unsustainable. Something has to change.

[BeckyJan]

Hello Bikemad,
You have already received good advice.

I am not sure if you have a good Social Worker but it is worth asking for a proper assessment for both your wife and yourself as carer. This factsheet explains:
http://alzheimers.org.uk/site/script...documentID=131

During such an assessment it is worth you asking about Respite time when you wife could become accustomed to being cared for by others. Its amazing how this is accepted when the nearest carer is not around.

To know and admit that you cannot continue 24/7 caring is a strength, not a weakness. In the later stages at home I paid for help for 6 hrs on a Wednesday so that I could continue seeing friends and having time for myself. He accepted it without too much difficulty although he refused to attend Daycentres. It is worth you asking your local Alz. Society, Age UK, Admiral Nurses, Crossroads what befriending services they offer - some areas are better served than others.

My husband went into a nursing home over three years ago. An extremely difficult time but it came as I reached breaking point through no sleep and physical exhaustion.
At that stage he was going downhill quickly, but as the nursing staff witnessed his problems, more notice was taken and the MH Consultant prescribed medication to help. Within 6 months he was certainly more healthy and settled, although he always wanted to come home. Sadly he is now in very late stage but at least I have more strength to face whatever comes next

Please keep in touch and let us know how things go. I am sure you will find the Forum helpful and supportive.
Best wishes

[jeany123]

I was in the same position as you last year I did everything for my husband ,he is 64 and I was screaming inside every time he asked something for the 20th time or lost things again ,he would get panic attacks if he couldn't see me and I felt trapped ,I could only sit and cry at how hopeless things were .My eldest daughter arranged a few days away for me with her , Allen went into respite complaining all the time, I worried the first 2 days we were away I had forgotten how to relax and my daughter had to make me sit on a park bench and watch life go by ,I was so used to always being up and down I hadn't sat for so long for ages .We walked in the sea had nice relaxing meals in the hotel and I felt a hundred times better and able to cope with anything when i got back and arranged 2 days a week respite for Allen in the same care home it did me the world of good and I have arranged respite for him this year and I am going away for a weekend with my youngest daughter .It is hard at first but it can be done and you will both benefit from the break
Because you are asking I think now would be a good time to try something different, don't leave it too late like I did I nearly had a breakdown

Jeany x

[Bikemad]

Thank you everyone who has responded. They are all very supportive messages. We have tried the sitting service, day centres and even the local NHS trust operates a befriender, but we've had to stop these because of my wife's aggression. I realise I have to do something, but other than the Alzheimers she is as fit as a fiddle and the thought of placing her where she is medicated to keep her calm and unable to spend most of the day in the fresh air seems like sending her to prison.
Thanks again for your messages, they do give you a boost.

[justbill]

Dear Bikemad
I am 57 and have been looking after my wife on a sliding scale for 9 years,so i completely identify in spades your angst, what you never mentioned in your post was what medication your wife is on, I only ask as about a year ago we added memantine to the rivastigamne she was already on, she changed from a snarling crying and often aggresive hard person to live with ,to someone who smiles a lot and only gets aggitated when out of her comfort zone .My wife is also in rude health and we break our days with constant dog walking . I loose it a bit every day, but I am extremely lucky she has over time accepted our enabler who she does not realise is paid by direct payments and thinks is a friend, prior to the memantine she spat at the last enabler so do not despair , easy to say with a huge gin and tonic in my hand .Ultimately we all have our own breaking points, I have given up beating myself up about any of my many shortcomings in caring for my wife, if good quality residential care for early onset was available then I would at the very least consider it an option ,so I know you probably have explored all drug options but give your consultant a hard time .Good luck , too many cliches but life does suck

[TinaT]

Hi late joining this thread but second everything that has been said. After a number of years caring for my husband with LBD and all the million and one things which end up just driving you into the ground, with all the problems of my husband; refusing help, day care not working because he got so upset there I was phoned by the staff and told to collect him within half an hour of dropping him off; the carer I had in who ended up cleaning windows because husband couldn't and wouldn't accept personal care from the lovely care worker; the hallucinations, the compulsive behaviour, I too accepted the inevitable and my husband has now been in care for four years.

The guilt of having to do this has lasted for a very long time and blighted my life. I slowly realised that going into residential care was my ony option. Since accepting this I have felt much better and slowly I've come to terms with our situation.

I love him just as much as ever, that goes without question and my caring role will never come to an end, nor do I want it to. I visit very often and regularly, I take an active part in his care and feel I am a member of a team of carers which is far better than being an unsuccessful solo carer.

Mty heart goes out to you, it really does.

xxTinaT

[Bikemad]

To those of you who were kind enough to respond or even read my initial entry, I thought I'd provide an update. (I need to write it down as I find it cathartic and helps get the sense into things). I finally threw in the towel on tuesday night after 4 sleepless nights in the past 7 and seeing her constantly distressed by fears and anxieties just wore me down. She is now in the specialist dementia care ward at the local mental health hospital (it is more like a hotel), and whilst I know I have done the right thing for us both, (at least in the short term) all the other worries start. She has stopped eating; has been agressive to the staff and (as with so many other entries by carers of younger sufferers), she is surrounded by other patients who are at least 10 years her senior. The doctors are going to change her meds (She has been on risperidone but has shown signs of the Parkinson's like side-effects)and I now find myself imagining all the possible outcomes if she doesn't settle. I am not surprised by this turn of events as we went through something similar 6 months ago, but that was at a time when she was at home, still had some control and understanding and my constant presence. Now, I feel a sense of enormous guilt over leaving her alone to battle with the illness and the demons it seems to have conjured up. Thaks for reading.

[CollegeGirl]

My heart goes out to you. Guilt is a terrible thing but I think you've done the right thing otherwise you would have become ill yourself and that would have been two ill people instead of one. One person affected by this horrible illness is enough, never mind two.

The thoughts that you have written, I think, could have come from my dad. Although he's almost 20 years older than you, I think the way that you feel about your wife is how he feels about my mam. Your post has helped me to see it more from his point of view and how difficult it is for them to accept the situation.

Thank you, Bikemad, and I sincerely hope that things improve for you and your wife. Please try to take care of yourself and not drown in the guilt. xx