Feeling adrift

Lucky girl, we’ve been through the DST and got turned down, but I have written to appeal. The nurses in the home are all telling me it’s a waste of time “nobody gets that” but I’m still going to try. I have a meeting at the CCG coming up and they have actually put “the decision won’t be changed” in an email to me when I asked about the format of the meeting. So looks like a battle if I take it further.

The DST assessment thing is horrible, they just talk about what the person can’t do etc, which is upsetting for them and they try their hardest to mark them down so they can deny funding. I would recommend you read up about the procedure on Beaconchc.co.uk (Age UK and Alzheimer’s also have some useful info) before you go. And don’t be afraid to speak up if you don’t agree with the professionals - I was a bit intimidated/ overwhelmed by the whole thing and didn’t. Best of luck.

Oh good grief - it beggars belief that someone might say that Maw.

I spent a peaceful 2 hours with OH this afternoon playing scrabble, which he managed not too badly. He talked about the good and bad things of being where he is; how some carers are better than others (inevitable I guess); and how he sees being there as the only sensible option. He asked if I was lonely at home. I told him that we are still a team and always will be, but in a different way now. It feels very sad; but we have to make the best of what we have, as in every stage of life.

That may be kindly meant Jue but is hardly helpful to say “it is only change”
It reminds me of the woman I spoke to a few weeks after Paw died in November 2017 who said “oh dear, that must have cast a bit of a shadow over Christmas”
Speechless.

It’s only change.
Change is often hard.
Give yourself time.
Your new life, routine will emerge..
Enjoy.

Luckygirl when a burden, such as the one that you have lived with for a considerable amount of time, is lifted, it is enviable that one feels at a lost end. This feeling can in cases lead to a feeling of worthlessness and depression. So take great care of yourself and get involved with other things and people to reinforce your feelings of self worth.

Don't mope around the house looking for useful things to do. But do care for yourself and enjoy yourself, guilt free, it may take some practice, you have earned it and are over due some pampering.

Thinking and praying for you.

When my husband was in hospital for two months a year ago, I spent a huge amount of money staying in hospital guest accommodation to be near him. The family were trying to persuade me to have a few days at home for a rest, but I found being at home on my own unbearable.
He is now home, and my life revolves round his well being, and these shared experiences make me apprehensive about the future, but what is the answer?
To link with another topic, I believe the lower pension age for women was largely to recognise the fact that for women, retirement was often the time they took on extra caring responsibilities.
It would be wonderful if there was more help with practical and financial problems, though the emotional upheavals would still remain.
Thinking of you, luckygirl, and hoping all the advice here will help you.

Message withdrawn at poster's request.

I have not been in your situation but have had depression. Adrift what to do. I found writing a list at bedtime of what I was going to do the following day helped. Even stuff like Cut my nails. Then you cross each thing off when it is done.and the rest of the day is yours. Go out for walk is a good one for the list, even 15 mins.

My closest friend had to take his beloved wife to a home 5 years ago after 5 years of caring for her himself. In his case, he's felt a lot of guilt and he goes to see her every day without fail. He was asked several times over the years if he might consider counselling, but he feels that's not his way. I am certain that it could have helped him if he had accepted that help. I really hope you do consider it, preferably a person who knows about dementia. Someone who knows how to help you. You deserve to enjoy your life as much as you can. I'm sure your dh would want you to, but I do know its not that easy. I wish you all the luck in the world and hope you find some kind of happiness.

Hi, I really understand and can relate (slightly different situation) but my first partner had cancer and I looked after him at home with help. It was so hard looking after him, I ran myself ragged but when he died I felt so redundant. Looking after him had been my main purpose and I felt useful and needed. It took a long time to settle afterwards. Be kind to yourself, find some things to do which you enjoy and accept that it will take quite a while before you adjust to your new life. You are going through a period of loss for the life you and your husband had, because although he is still here, things have changed. Xx

Having followed your story for some time I think of you often, Luckygirl. Caring gradually consumes you, so that when the daily routine of medicines and cleaning up is removed, and you only have executive charge of your DH’s care, there is quite a lot of space for thoughts to creep in. Add to this the long term effects of 24 hour caring on your health and energy, and it is hardly surprising that you have hit rock bottom.

Others have been there and say that the exhaustion and lack of optimism will disappear, and I do so hope that is true for you. I send my good wishes and hope that you gradually feel yourself again.

????

Oh bless you, it will take some time to adjust.
Maybe have a look on the notice board in your library and see if anything catches your eye, an exercise class, hobby group etc.
It’s so difficult to change long term habits but doing something different can help.

Lucky can't add anything but take care of yourself sorry to hear he as a small pressure sore after you worked so hard to look after his pressure points . To all you careers out there ?

Five weeks is but a blink of the eye in terms of how long you've been married to your OH, Luckygirl. It will take some adjusting to. I've just this weekend had a friend to stay. Her dh has dementia and went into hospital as an emergency admittance 15 months ago and he has remained there, apart from a disastrous attempt at a care home, where because he is a physically fit 70yo, they couldn't cope with him and couldn't keep him safe.

My friend says it's like being widowed without anyone really acknowledging the widowhood. She's married-but-not-married because her dh doesn't have a clue who she is or who their children are. At the start, she was very busy with all the admin to do with him going into hospital and assessments. Gradually, though, she picked up on her old way of life. She started seeing friends again, got involved with dementia groups and with hospitals groups, goes to U3A things, sees her children and so on. The hospital is nearby so she visits most days, thought often only for 30mins. She's also found friends amongst other wives in the same situation. She's also doing things in the new house they moved to a while ago. She says it's better spent on making her home cosy than giving it to the government!

She also has some health issues of her own but now, 15mths on, she is looking and feeling better than she has done for years and in a curious way seems to be enjoying life again. It's been a hard road for her to walk along and who knows where it will go next and she says it's a matter of taking your pleasure where you can.

You say yourself you're depressed, and that comes across clearly. If the AD's aren't helping, maybe you need to ask your doctor about a change to another one. Although depression makes it so hard to do even a small thing like arrange a doctor's appointment.

You must be kind to yourself. Acknowledge that you've been under huge strain and that how you feel now is a consequence of that. Allow yourself to feel miserable. Don't feel you've got to present a positive face to the world. At the same time, give yourself some TLC. Take the path of least resistance. Eat peanut butter sandwiches, if that's what's easiest. Or have cereal three times a day. A few weeks of that won't harm and you can always take a vitamin tablet if you want. Plan a small daily treat. A warm bath; some chocolate; a vase of flowers; a long lie-in; a new magazine. Anything that in the term of today 'brings joy'.

I'm not a huge contributor to GN but I do think of you and wonder how you are. Ca canny, as they say in Scotland. X

Sometimes I wish OH was in a nursing home because I'm doing all the things you describe and have been for a long time. Just take time to adjust and recharge your batteries before worrying about doing something else and being busy. Eventually you will start to take an interest in things again. Being a carer is exhausting both physically and mentally and at times you can't be bothered doing anything.

I've nothing to add to all the good advice. I was in a similar situation after my mother died, and I felt very lost for a while. Just give yourself time, there is no "right" way to feel, it's such a huge adjustment. Good luck!

Indeed - relief and guilt in equal measure.

It’s just like the empty nest syndrome, which can mean a big change in your life. Just like a bereavement

Oh yes ….sorry for you ...I know how it feels ...you alternate between feeling relief at the knowledge he is receiving the care he needs, and guilt that he is there ! My husband had to go into a care home for the last few months of his life and it was still hard work visiting every day and responding to his demands on the phone whilst he could still use it ...mainly 'I want to go home ….bring me a case so you can pack it when you get here'.....this was every day and I felt really guilty. When he died, and I had to clear the house (it was sold) and move to a different country that occupied a lot of time ...but the relief and freedom I had expected to feel have not happened ...I am still wondering what to do with myself and still think 'I mustn't go too far in case he calls'...….or I mustn't make a noise in case it upsets him'......odd...I never expected to feel this this ….people tell me it will pass and I am going on my first holiday next week, for more than 10 years because I could not leave him ….I am not sure I am looking forward to going ..it will be strange ! Best of luck ..I think we all struggle when first on our own [flowers[

oh Lucky- just seen this thread. As you know, I've been thinking of you lately and it must be so hard.

We've been supporting my brother going through similar issues- with my sil going in and out of hospital and 3 different Care Homes- and it is so hard.

Weather is not helping either- if only you could go out for walks in the woods or spend time in garden. Hugs xxx

Dare I say it Luckygirl it would be good if this were to be one of his worse days?

blueflinders - welcome to gransnet. Please do not worry about popping up in this thread - you are going through some difficult times and gransnet can be a real help.

Daisymae - the depressed bit is not in doubt. I am on an antidepressant and there is a lot of weeping going on - especially at night when I would be much better off fast asleep.

MawB - the whole thing about this dreadful meeting is that they do need to actually see him and speak to him in order to get a grip on how things really are. But I am hoping that we can make this bit as brief as possible, and I will then suggest we move off to a different room. It is a difficult balance between potential distress to him (and me!), but needing to respect his right to be involved and to make sure they actually see what the problems are.

Five weeks is no time. It will be a gradual process getting used to being on your own. I am sure everything will eventually fall into place Do look after yourself though. Make sure you eat properly. Sending love and peace x

Its what Bradfordlass says. You will come out the other side. Do what you want when you want I.e. eat, dress, tv, sleep etc. There are no rules. I reckon you're feeling 'of no more use, aimless' but you are still lovely, clever, wonderful you - but shell shocked. ((Hugs))