Trying not to resent caring for constantly sick husband

I am now going to let my guard down and admit to something that I don't usually do.
Do any of you drink more than you know is good for you to cope with your situation.
I will admit that I do.
After a trying day I will have a G&T before my evening meal and then when I have got my H in bed, usually around 8:15pm I will have a whiskey or a brandy, probably a large one. I know it is not a solution, just a relaxant.

Who cares for the carer? That's what you are. Get in touch with your local social services for adults and ask for a referral for you as a carer and your husband (if he will have one) too, to see what support you can get. Our local services also give grants for the carer to have some quality time out. Find out whats available and start looking after you too

Lorelei ,you mention young Carers.
Some years ago I saw a programme where a blind couple had I think five or six children.
The two eldest were girls and the others were boys.
The two girls -below the age of 15 -looked after both the parents and the little boys one was a baby.
It was a heart rending story
One day a month I think it was ,they were able to have a day away from home.
I often wonder how things worked out for them.
Does anyone else remember seeing the programme?

What a lovely lot of posters you are.
I am sure that Seilha fells better for having shared her problem having received such supportive advice.
A friend and neighbour of mine is 96 years old and is the primary Carer for her 83 year old sister who has schizophrenia .
Sometimes she tells me she just wants to scream.
The one thing that seems to help her is that she has a sense of humour and can have me in fits.
By golly does she need it

What I am unable to understand is -Why are so many more elderly people suffering from dementia?
Many people say it is because we are living longer but I know of people in their 50s who have dementia yet when I was growing up my grandfather and his seven siblings were all alive and lived until they were in their 90s.
A friend suggested that it might be because so many people are taking too many pills which often react against one another.
I haven't been any help Sielha but my thoughts are with you and others who are in a similar position to you.

I feel very deeply for those of you who are caught in the caring role when you are still relatively young.
My H has dementia and recently suffered a stroke which has left him with further brain damage.
He is very hard work and as I am now 81 I struggle to cope.
He is incontinent and that is another thing hard to deal with.

I get one day a week when he goes to daycare, that costs £60 plus £16 taxi fares.
I get 6 weeks respite care which I am fortunate to get via SS for £150 a week.
I am totally trapped the rest of the time as he can't be left at all as he is a falls risk.
Two weeks ago he fell 4 times in 8 days.
My main worry is, what happens to him when anything happens to me.
He is actually in better health than I am.

I would agree with all those who say take a little time for yourself here and there, find a regular hobby or interest, anything you enjoy or can just cut-off and/or concentrate on - it is so important for you to look after yourself - this in turn will benefit your husband. Resentment is a very human emotion so no need to feel bad for having feelings. I cared for my nan towards the end of her life and struggled as her dementia meant she rarely knew who I was, would say hurtful things or be uncommunicative etc - caring is damn hard work, physically and emotionally. So often carers get the arse-end of everything, yet without them relationships and the social structure would suffer further. Child carers are overlooked and under-supported. My partner has spent long periods caring for me and admits to having gone through the whole range of emotions from guilt, anger, resentment, fear, frustration, loneliness, helplessness, right through to love and hope with a dash of positivity etc. I know he loves me and would never begrudge him taking time out - he needs it - even a short break, like escaping to his shed for an hour. Who cares for the carers? So many on Gransnet will relate to your situation and it can be therapeutic and comforting to talk to 'stranger-friends', so feel free to rant and to accept some moral support

I took Early Retirement at 50, DH had retired at 65 but he had periods of depression. We had some good times but others when he sank into depression when all he wanted to do was sleep. The hardest to cope with was personal hygiene & changing his clothes. I used to escape into the garden or go shopping. We moved (downsized to a new area) which he found difficult to cope with at times. He was admitted to Hospital finally, firstly diagnosed with Pneumonia then Terminal Lung Cancer, he moved to a Nursing, I could not have cared for him at home, sadly I was widowed at 57.

I had support from good friends & DD but the strain of caring for him fell to me, I wish I'd found a Carer's group.

My advice is seek out help from Carer's group if there is one locally, try to take time out for yourself, you are no good to your DH if you're "running on empty"

I wish I'd known about GN for support, just "having a rant" or writing down how you feel helps. Sending good wishes &

I'm a carer, and it's just sometimes good to switch off mentally to give yourself a bit of space. My husband loves to talk and give instructions but hates to listen, though he is a dear! Try taking some time out for yourself each day, and see friends if possible. I'm not really up to hobbies yet, but seeing friends and family is a treat, and taking time out to read last thing in the day is great if I'm not too tired. I do have an allotment as an escape which is lovely in the summer. But I find I really need to shake off the daily invalid whinging I get, which can be a little exasperating!

Seilha,you are doing a wonderful job, and you need to get this off your chest and Gransnet is here for you.I hope we have helped you a little.
Sending hugs and some virtual flowers.

Sorry you are feeling overwhelmed with your caring role.I suggest you contact Carers organisation who have many branches and exist to support the Carers .They provide excellent support Sielha.

I guess I jumped in late, but I know full well how it feels to have a loved one who is incapacitated by a serious illness, The journey is fraught with unbelievable stress, sleep deprivation and anguish. It is both physically demanding and emotionally draining.

So, never feel guilty whenever you reach your tether. It can happen many times....I know.

Many here have also given you excellent advice. I can only leave you with this small bit of wisdom....... you can continue to be supportive of your H as well as your family, but the longer you put your own needs aside, the less effective you become.

I do hope things get easier for you.
Healing hug going your way.

Being a carer is tough but you do need to arrange some respite. Haven't you got anyone who will look after your husband for a few hours a week?

Join a carers support group in your area they are INVALUABLE.it was not a rant no it was a cry for help....please go get it for yr own sanity.

Oh Sielha ....I could have written your post! Except for 1 detail... I've been caring for my husband as well as working for 22 years!!! He sits for 15/17 hours a day watching t.v. won't keep doctors or hospital appointments.... won't go for blood tests.... he's now going deaf and won't get a hearing aid.... hasn't seen an optician to get new glasses (25 years)....ignores every suggestion I make to make his OR indeed my life easier. I don't drive, but look after my grandkids for two days a week ...they keep me reasonably sane!! He is a law unto himself. I deliver up all his needs and he accepts them ( ungraciously I might add). He goes through almost 12 monthly 'obsessions' like preferring one food to another... Like having to go to the loo as soon as I mention he might like to put the next load of washing in or some such !! I have lived a waking night,are for 22 years in the hope that he will finially 'wake up' to what's he's doing/done to us but I now know it's in vain!! NOTHING works on him blackmail ..bribery.. Threatening to leave... calling ambulance...nothing works. He just shrigs ans stays sitting in the chair!! Please..please..please..... get out of this and go our own way! He will not change. He doesn't like or love you enough to make it worth his while!! Sorry to be so blunt but I'm speaking to you fron 22 long years of misery. RUN!

Siela, no you are not being unreasonable in being fed up of having to cope with other folks eternal illnesses. My first husband had MS, a pretty horrible disease that would come and go, he had the relapsing/remitting form of it, but each relapse left him that little bit more disabled and so on. Now, not to sound unsympathetic or anything, but I always had to be the ‘strong’ one, which was fair enough, but..............if god forbid, I ever felt poorly, forget it. If I had a really sore back after doing the gardening for instance, his back would be sorer, if I had a pounding headache, his would be pounding harder and so on. Just for once, it would have been nice for someone to acknowledge that I was ill and was allowed to feel sorry for myself. Even my youngest daughter would only allow me one day of sympathy, then I should be able to ‘bounce’ back. But she was only behaving like she could see was the ‘norm’ in our house I suppose.

So, hell yeh, moan, groan, shout and swear, cry, do whatever you feel like you need to do. You are just as important as everyone else in your family. Take care xx

Thank you Brigidsdaughter x

Luckygirl, I had the same - DH calling 111 because he had sore legs ( ongoing, and the bane of our lives ). I told him that it wasn't an emergency, and that they would only tell him to keep taking the painkillers. Which they did! Another time, I called 111 as he would not respond to anything, including very loud noises and pin pricks to his skin. He only roused when the paramedics took off the ECG sticky pads from his chest! They took him to A and E, but I had to
Pick him up late at night as they didn't find anything medically wrong. Before we had left the building, he said that he'd kick my a---e when we got home!! I replied that we wouldn't leave the building until he accepted responsibility for being there. He grudgingly gave in. When I questioned him the next day, he said that he had been practising being in a trance!! I know how bizarre you must be finding life too.

Oh Grannybuy, I'm so sad to hear your story

Rant away grannybuy - I am sure you are getting the right advice. There is more than one way to care for your loved one and sometimes making the choice for a nursing home is the best way for you to show you care. If he is settled then the kindest thing you can do is to let him stay there, with the professionals around who, it must be remembered, go off duty. Carers in the home are never off duty, and the quality of care suffers because of that.

It is a hugely stressful task and all we can do is find small moments to let off steam; and above all forgive ourselves the negative thoughts that creep unbidden into our minds at times.

I am lucky that I have such a caring set of DDs; and also some close friends to whom I can turn for a hug.

You have every right to feel overwhelmed. We don't choose these situations, they happen to us. DH was diagnosed with PD ten years ago, and at the end of last year, with Parkinson,s dementia. The psychotic episodes became so severe that he was also physically aggressive, and extremely deluded. It came to a head when he disappeared, found by the police, and hospitalised. To cut a long story short, he is in a nursing home, but is a lot calmer, I surmise due to a change in medication. I am just as miserable with him there as I was when he was at home, for different reasons. The nursing home is fine, but I still find that it shocks me daily that he's there, that this whole situation arose and I can't really move on. I also have an adult 'child' at home who has learning difficulties, and was quite traumatised by the goings on at home. I am sorely tempted to have DH back home on his good days, but then I remind myself of how awful it was. Also, the change in medication has lessened his mobility, meaning that he can rarely move around unaided, due to weakness and falls. There's also the difficulty of getting support at home. All professional advice is to leave things as they are, but these people have no personal investment. I also worry that within a couple of weeks, I might realise what a mistake it was, but then not get the required help. It's such a dilemma, and making me ill. Sorry for my rant, but this post made me want to 'get it out'.

silverlining I feel for you. I have Hashimoto's, the autoimmune type of under active. Also in the small group that is not sorted by Levothyroxine.im on Lego, plus T3. However, best of all I'm on low dose of Citalopram for the depression. It changed my life. I am now dealibg with the weight gain, slow but sure. Has your DH read up to help himself? My heart goes out to you - its not easy livin g with someone e with it ?

My husband had Crohne's disease for most of our married life. It made life very difficult for him, but also meant that plans had to be cancelled, often at the last minute. I sometimes used to suspect that he used his illness as an excuse, if he didn't want to go somewhere. There were times when I really resented the effect it had on our lives, then I used to feel guilty when he had a bad spell - practically living in the loo.
He later developed heart and circulation problems and eventually had a bad stroke. The last few years of his life were very difficult, and very restricting for both of us. He was almost 82 when he died, and I was 76, and felt that it was rather late in life to start doing the things I had missed out on.
I know exactly how you feel, Sielha. A mixture of tiredness, frustration, resentment and love. I wish you well, and hope that you can find a way to ease your burden a little.

Dear ladies, all of you, wives and widows. Do give yourselves a break!

We all feel resentment at times about the way life is or has turned out.

All of you cope by crying in the shower, or something similar. None of you are taking it out on your sick husbands, mothers, fathers, etc. etc.

Go on, give yourselves a big pat on the back and rant away, when out of earshot of those concerned.

I find scrubbing floors helps; I can cry into the pail of water if I feel like it, or scrub the floor while cursing. Others prefer digging the garden and kicking the h.ll out of dandelions.

AND it is all right to discuss reasonable precautions with the "patient" and to give malingerers (which I am sure they are not) a kick in the whatsit.

My husband died two years ago on the 28th of this month aged 51 after I juggled working and caring for him for just over two years. I found myself resenting the situation from time to time and felt guilty once he was no longer here. When you are caring for someone you need to be able to offload. I remember having an emotional meltdown at my GPs one day when I was caring for him. The staff were so kind looking after me. I just needed to be able to talk to someone and I was able to self refer for counselling. I’d give anything to have him back even with ill health.

I have recently discovered and now subscribe to 'Headspace', a website that introduces you to meditation in a very supportive and user friendly way. Even a short time spent in quiet meditation breaks the anxiety caused by the constant thoughts and worries endless going round your head.
There is a free introductory lesson. I would recommend it.